Question:

1) The mice were DESIGNED to have this IMMUNE problem Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand for receptor activator of NFkB (RANKL).

2) It is an AUTOIMMUNE associated bone disease. Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear

Debs – Hide quoted text — Show quoted text – Did they ever think of giving them calcium supplements? Bone loss could be due to malabsorption or due to the other powerful medications used for IBD. And it doesn’t sound very promising: "This study shows that some bone diseases and intestinal problems may share a common cause," tx Jeff I have tried to post this as plain text only. I hope it works. Thought this was quite interesting as many of us have low bone density. Debs Email to a Colleague <http://www.medscape.com/sendurl Printable Version <http://www.medscape.com/viewarticle/466447_print Publication Logo Bone Disease and Intestinal Problems May Share a Common Cause By Megan Rauscher NEW YORK (Reuters Health) Dec 26 – Scientists have evidence in mice that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and Blog colleagues report their study in the December issue of the journal Immunity. "Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear." Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand for receptor activator of NFkB (RANKL). "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Dr. Carding said. Treating mice with exogenous recombinant osteoprotegerin — a protein that interferes with RANKLs binding to its receptor — reversed bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Dr. Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss. Immunity 2003;19:849-861.

Response:

Did they ever think of giving them calcium supplements? Bone loss could be due to malabsorption or due to the other powerful medications used for IBD. And it doesn’t sound very promising: "This study shows that some bone diseases and intestinal problems may share a common cause,"

tx Jeff

– Hide quoted text — Show quoted text – I have tried to post this as plain text only. I hope it works. Thought this was quite interesting as many of us have low bone density. Debs Email to a Colleague <http://www.medscape.com/sendurl Printable Version <http://www.medscape.com/viewarticle/466447_print Publication Logo Bone Disease and Intestinal Problems May Share a Common Cause By Megan Rauscher NEW YORK (Reuters Health) Dec 26 – Scientists have evidence in mice that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. "Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear." Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand for receptor activator of NFkB (RANKL). "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Dr. Carding said. Treating mice with exogenous recombinant osteoprotegerin — a protein that interferes with RANKLs binding to its receptor — reversed bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Dr. Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss. Immunity 2003;19:849-861.

Response:

Ditto! Christine CD

– Hide quoted text — Show quoted text – Very interesting, and encouraging in their search for an eventual cure. Thanks Deb!  mgbio I have tried to post this as plain text only. I hope it works. Thought this was quite interesting as many of us have low bone density. Debs Email to a Colleague <http://www.medscape.com/sendurl Printable Version <http://www.medscape.com/viewarticle/466447_print Publication Logo Bone Disease and Intestinal Problems May Share a Common Cause By Megan Rauscher NEW YORK (Reuters Health) Dec 26 – Scientists have evidence in mice that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. "Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear." Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand iwc grand complication watch replica for receptor activator of NFkB (RANKL). "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Dr. Carding said. Treating mice with exogenous recombinant osteoprotegerin — a protein that interferes with RANKLs binding to its receptor — reversed bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Dr. Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss. Immunity 2003;19:849-861.

Response:

Very interesting, and encouraging in their search for an eventual cure.  Thanks Deb!  mgbio – Hide quoted text — Show quoted text – I have tried to post this as plain text only. I hope it works. Thought this was quite interesting as many of us have low bone density. Debs Email to a Colleague <http://www.medscape.com/sendurl Printable Version <http://www.medscape.com/viewarticle/466447_print Publication Logo Bone Disease and Intestinal Problems May Share a Common Cause By Megan Rauscher NEW YORK (Reuters Health) Dec 26 – Scientists have evidence in mice that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. "Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear." Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand for receptor activator of NFkB (RANKL). "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Dr. Carding said. Treating mice with exogenous recombinant osteoprotegerin — a protein that interferes with RANKLs binding to its receptor — reversed bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Dr. Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss. Immunity 2003;19:849-861.

Response:

I have tried to post this as plain text only. I hope it works. Thought this was quite interesting as many of us have low bone density. Debs Email to a Colleague <http://www.medscape.com/sendurl Printable Version <http://www.medscape.com/viewarticle/466447_print Publication Logo Bone Disease and Intestinal Problems May Share a Common Cause By Megan Rauscher NEW YORK (Reuters Health) Dec 26 – Scientists have evidence in mice that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. "Autoimmune associated bone disease and intestinal inflammation are closely linked with deregulation and hyperactivation of autoreactive CD4 T cells," they write. "How these T cells are activated and mediate disease is not clear." Mice engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and osteopenia, the scientists explain. Dr. Carding and colleagues’ experiments indicate that this is caused by increased production of the ligand for receptor activator of NFkB (RANKL). "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Dr. Carding said. Treating mice with exogenous recombinant osteoprotegerin — a protein that interferes with RANKLs binding to its receptor — reversed bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Dr. Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss. Immunity 2003;19:849-861.

Response:

Question:

it has been known for some time that people with ibd have a higher risk for low bone density.  i think we will make great strides in this "t" cell research.  sounds like science is on the right track. jeff

– Hide quoted text — Show quoted text – Thank-you for posting this Stan Imagine being able to treat IBD patients for both their IBD and osteopenia/osteoporosis with one drug! Perhaps this explains why many people seem to have lower bone density before even being diagnosed or treated with steroids? Take care, Amy. FYI Bone and Intestinal Disease May Have Common Cause Fri December 26, 2003 02:52 PM ET

Response:

Thank-you for posting this Stan Imagine being able to treat IBD patients for both their IBD and osteopenia/osteoporosis with one drug! Perhaps this explains why many people seem to have lower bone density before even being diagnosed or treated with steroids? Take care, Amy. – Hide quoted text — Show quoted text – FYI   Bone and Intestinal Disease May Have Common Cause Fri December 26, 2003 02:52 PM ET

Response:

Sounds interesting Stan. I wonder how significant this finding is?. John

– Hide quoted text — Show quoted text – FYI Bone and Intestinal Disease May Have Common Cause Fri December 26, 2003 02:52 PM ET By Megan Rauscher NEW YORK (Reuters Health) – In studies with mice, scientists have found evidence that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by the abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. Autoimmune-related bone disease and intestinal inflammation are closely linked with the deregulation and the hyperactivation CD4 T cells, which are involved in the body’s defense system, or immune response, they report. "How these T cells are activated and mediate disease is not clear." Mice that were genetically engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and the loss of bone cells, the scientists explain. Carding and colleagues’ experiments indicate that this is caused by increased production of a protein called RANKL. "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Carding said. Treating mice with osteoprotegerin, a protein that prevents RANKL from binding to its receptor, reversed this bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss.

Response:

FYI   Bone and Intestinal Disease May Have Common Cause Fri December 26, 2003 02:52 PM ET By Megan Rauscher NEW YORK (Reuters Health) – In studies with mice, scientists have found evidence that osteoporosis-like bone disorders and inflammatory intestinal disorders are both caused by the abnormal regulation of a common protein. Dr. Simon R. Carding from the University of Leeds in England and colleagues report their study in the December issue of the journal Immunity. Autoimmune-related bone disease and intestinal inflammation are closely linked with the deregulation and the hyperactivation CD4 T cells, which are involved in the body’s defense system, or immune response, they report. "How these T cells are activated and mediate disease is not clear." Mice that were genetically engineered to lack a key regulator of CD4 T cells have overactive T cells and spontaneously develop ulcerative colitis and the loss of bone cells, the scientists explain. Carding and colleagues’ experiments indicate that this is caused by increased production of a protein called RANKL. "We find that the hyperactive CD4 T cells produce too much of this protein, which then contributes to bone breakdown and bowel inflammation," Carding said. Treating mice with osteoprotegerin, a protein that prevents RANKL from binding to its receptor, reversed this bone loss and improved colitis. "This study shows that some bone diseases and intestinal problems may share a common cause," Carding told Reuters Health. "If similar mechanisms occur in humans, then osteoprotegerin might prove a useful treatment for intestinal disorders such as ulcerative colitis and Crohn’s disease," he said, which are both often accompanied by bone loss.

Response:

Question:

- Hide quoted text — Show quoted text – Deb, you crack me up. John H(I) Great, I’ll just stare at a lemon. Debs A chemical in saliva has been found to greatly improve the condition of patients with inflamed bowels. Treatment with Epidermal Growth Factor, a molecule produced naturally in human saliva, could be a major breakthrough for sufferers, US scientists have claimed. Patients treated with Epidermal Growth Factor stopped experiencing symptoms. Bowel inflammation or ulcerative colitis, affects about 95,000 people in  the UK, with 5,500 new cases being diagnosed each year. (Source:  Teletext)

sorry about the three postings…my computer and google together were messing up bigtime.. annie

Response:

Deb, you crack me up. John H(I)

– Hide quoted text — Show quoted text – Great, I’ll just stare at a lemon. Debs A chemical in saliva has been found to greatly improve the condition of patients with inflamed bowels. Treatment with Epidermal Growth Factor, a molecule produced naturally in human saliva, could be a major breakthrough for sufferers, US scientists have claimed. Patients treated with Epidermal Growth Factor stopped experiencing symptoms. Bowel inflammation or ulcerative colitis, affects about 95,000 people in the UK, with 5,500 new cases being diagnosed each year. (Source:  Teletext)

Response:

"Great, I’ll just stare at a lemon." Debs Schuback, you are a kosher Lemon. Just strip off and stand naked in front of a mirror. You will be drenched in phlegm next to no time. Splendid, Navid B-)

Response:

Reported to your ISP. Debs – Hide quoted text — Show quoted text – "Great, I’ll just stare at a lemon." Debs Schuback, you are a kosher Lemon. Just strip off and stand naked in front of a mirror. You will be drenched in phlegm next to no time. Splendid, Navid B-)

Response:

"Great, I’ll just stare at a lemon." Debs Schuback, you are a kosher Lemon. Just strip off and stand naked in front of a mirror. You will be drenched in phlegm next to no time. Splendid, Navid B-)

navid what is your problem? annie

Response:

"Great, I’ll just stare at a lemon." Debs Schuback, you are a kosher Lemon. Just strip off and breitling crosswind bl155 replica stand naked in front of a mirror. You will be drenched in phlegm next to no time. Splendid, Navid B-)

navid just what is your problem? annie

Response:

This subject is very interesting to me. Ages ago I posted a personal observation about saliva which didn’t ring any bells with anyone else at the time. Here it is again. I’ve had CD for 45 years, since I was 12 years old.  I’ve had four bowel resections which cumulatively have left me with short-bowel syndrome. Although the Crohns itself has been inactive for quite awhile, I still have "mechanical" problems with my rearranged plumbing from time to time. For example, I’m subject to periodical partial/total bowel obstructions. These obstructive episodes rarely have led to hospitalization. Typically, I know what’s going on and I just ride them out, painful as they can be. Over the years I’ve discovered a few little tricks which can sometimes be of help in coping with an obstruction. One of them has to do with saliva. I’ve found that forcing myself to get some saliva going and continuously swallowing for as long as I can keep it up actually generates some peristalsis. (Doing this is easier said than done when you’re so nauseated that it hurts to drink a little water. It’s tough to muster up any spit when you’re already pretty dehydrated.) If I can focus on doing this long enough — even for a few minutes — I’m rewarded with a few intestinal gurgles. Keeping it up leads to more gurgling and pretty soon — though it feels like an eternity — the obstruction begins to relent and I start passing gas. I know this sounds pretty off-the-wall but the new treatment referred to below makes it seem less so. If sharing this helps even one person then posting this is   definitely worthwhile to me. Robert Having had – Hide quoted text — Show quoted text – A chemical in saliva has been found to greatly improve the condition of patients with inflamed bowels. Treatment with Epidermal Growth Factor, a molecule produced naturally in human saliva, could be a major breakthrough for sufferers, US scientists have claimed. Patients treated with Epidermal Growth Factor stopped experiencing symptoms. Bowel inflammation or ulcerative colitis, affects about 95,000 people in the UK, with 5,500 new cases being diagnosed each year. (Source:  Teletext)

Response:

A chemical in saliva has been found to greatly improve the condition of patients with inflamed bowels. Treatment with Epidermal Growth Factor, a molecule produced naturally in human saliva, could be a major breakthrough for sufferers, US scientists have claimed. Patients treated with Epidermal Growth Factor stopped experiencing symptoms. Bowel inflammation or ulcerative colitis, affects about 95,000 people in the UK, with 5,500 new cases being diagnosed each year. (Source:  Teletext)

Response:

Great, I’ll just stare at a lemon. Debs – Hide quoted text — Show quoted text – A chemical in saliva has been found to greatly improve the condition of patients with inflamed bowels. Treatment with Epidermal Growth Factor, a molecule produced naturally in human saliva, could be a major breakthrough for sufferers, US scientists have claimed. Patients treated with Epidermal Growth Factor stopped experiencing symptoms. Bowel inflammation or ulcerative colitis, affects about 95,000 people in the UK, with 5,500 new cases being diagnosed each year. (Source:  Teletext)

Response:

Question:

I saw my RD yesterday and went over my conditions. While I was there (and mentioned my previous PCP’s dx of irritable bowel syndrome) the RD said that there is an apparently under reported elevated incidence of colitis in people with ankylosing spondylitis. He also said that the sulfasalazine I’m on is often prescribed for colitis. He also had to change my meds because the Mobic wasn’t working too well. Every couple of years my body gets used to whatever NSAID I’m on and it just doesn’t work. About a years and a half ago, I was having problems with the Mobic and, instead of just changing it he added sulfasalazine. That worked fine for a bit over a year, and then I started getting more pain and stiffness. This time he’s keeping me on the sulfasalazine, but changing the Mobic to Voltarin. I just took the first dose of Voltarin this evening and I may be having a GI problem with it. I’ll give it another dose or two to see if the problem is coincidence or the new med. He doesn’t want me trying Methotrexate because I have some respiratory problems which it might exacerbate. The other thing we went over is what arthritis and where. He said that I have osteo in my knees, AS in my back, shoulders and neck and both in my hands. Since none of it is REALLY bad, he wants to keep me off the injectables. Since I hate needles, I agree. I started getting allergy injections, two in each arm every week when I was 6, which was changed to "emulsions" (a very thick serum which took about 30 seconds per injection) when I was 13. This continued until I was 17. I REALLY HATE NEEDLES. Oh well; let’s see what happens next… — "One of the most striking differences between a cat  and a lie is that a cat only has nine lives."  Puddinhead Wilson’s Calendar (Mark Twain) —– mr(dot)bones(at)att(dot)net

Response:

((Norman)) I’m glad your doc is up on things…it’s so nice having not to bring them up to date. I had a GI problem with the Voltaren also…kind that kept me within 10 feet of the bathroom…good luck with it…donnah – Hide quoted text — Show quoted text – I saw my RD yesterday and went over my conditions. While I was there (and mentioned my previous PCP’s dx of irritable bowel syndrome) the RD said that there is an apparently under reported elevated incidence of colitis in people with ankylosing spondylitis. He also said that the sulfasalazine I’m on is often prescribed for colitis. He also had to change my meds because the Mobic wasn’t working too well. Every couple of years my body gets used to whatever NSAID I’m on and it just doesn’t work. About a years and a half ago, I was having problems with the Mobic and, instead of just changing it he added sulfasalazine. That worked fine for a bit over a year, and then I started getting more pain and stiffness. This time he’s keeping me on the sulfasalazine, but changing the Mobic to Voltarin. I just took the first dose of Voltarin this evening and I may be having a GI problem with it. I’ll give it another dose or two to see if the problem is coincidence or the new med. He doesn’t want me trying Methotrexate because I have some respiratory problems which it might exacerbate. The other thing we went over is what arthritis and where. He said that I have osteo in my knees, AS in my back, shoulders and neck and both in my hands. Since none of it is REALLY bad, he wants to keep me off the injectables. Since I hate needles, I agree. I started getting allergy injections, two in each arm every week when I was 6, which was changed to "emulsions" (a very thick serum which took about 30 seconds per injection) when I was 13. This continued until I was 17. I REALLY HATE NEEDLES. Oh well; let’s see what happens next… — "One of the most striking differences between a cat  and a lie is that a cat only has nine lives."  Puddinhead Wilson’s Calendar (Mark Twain) —– mr(dot)bones(at)att(dot)net

Response:

I have read some studies about inflammatory lesions in the bowels of AS patients. Apparently, it is pretty common with inflammation, though in some cases it doesn’t case any symptoms and isn’t detected until a colonoscopy is done. Patients with inflammatory bowel disease may get inflammatory arthritis as well. Remicade is used in Crohn’s and ulcerative colitis, but not Enbrel, as it for some reason doesn’t have much effect on bowel inflammation. http://www.arthritis.co.za/ankspond.html#general My dad has AS, my sister has Crohn’s and I have AS/PA. Go figure. I don’t have any bowel problems myself, but my RD says the weird little mouth ulcers I have look exactly like the lesions people with Crohn’s have and my sister has them too. Nina – Hide quoted text — Show quoted text – I saw my RD yesterday and went over my conditions. While I was there (and mentioned my previous PCP’s dx of irritable bowel syndrome) the RD said that there is an apparently under reported elevated incidence of colitis in people with ankylosing spondylitis. He also said that the sulfasalazine I’m on is often prescribed for colitis. He also had to change my meds because the Mobic wasn’t working too well. Every couple of years my body gets used to whatever NSAID I’m on and it just doesn’t work. About a years and a half ago, I was having problems with the Mobic and, instead of just changing it he added sulfasalazine. That worked fine for a bit over a year, and then I started getting more pain and stiffness. This time he’s keeping me on the sulfasalazine, but changing the Mobic to Voltarin. I just took the first dose of Voltarin this evening and I may be having a GI problem with it. I’ll give it another dose or two to see if the problem is coincidence or the new med. He doesn’t want me trying Methotrexate because I have some respiratory problems which it might exacerbate. The other thing we went over is what arthritis and where. He said that I have osteo in my knees, AS in my back, shoulders and neck and both in my hands. Since none of it is REALLY bad, he wants to keep me off the injectables. Since I hate needles, I agree. I started getting allergy injections, two in each arm every week when I was 6, which was changed to "emulsions" (a very thick serum which took about 30 seconds per injection) when I was 13. This continued until I was 17. I REALLY HATE NEEDLES. Oh well; let’s see what happens next… — "One of the most striking differences between a cat  and a lie is that a cat only has nine lives."  Puddinhead Wilson’s Calendar (Mark Twain) —– mr(dot)bones(at)att(dot)net

Response:

((Norman)) I’m glad your doc is up on things…it’s so nice having not to bring them up to date. I had a GI problem with the Voltaren also…kind that kept me within 10 feet of the bathroom…good luck with it…donnah

I had a similar problem with Indocin. I started the Voltaren last night and I’m not sure if it’s going to keep me "running" or not. I think I’d better not go to far for a while. — "One of the most striking differences between a cat  and a lie is that a cat only has nine lives."  Puddinhead Wilson’s Calendar (Mark Twain) —– mr(dot)bones(at)att(dot)net

Response:

Question:

Hello, I’m so sorry to hear that your friend is ill. I agree with Susan.  Your friend should find another GI doctor.  I know that’s a frustrating thing to do, but it will be worth it when she finds a doctor who can help her. One thought the did come to mind:  Has she been tested for Celiac disease (here’s a website that describes Celiac disease: http://www.niddk.nih.gov/health/digest/pubs/celiac/#1)? Jennifer I have a friend who has some of the symptoms of Crohn’s. She has no diarrhea and some products, especially wheat, bother her intestines.

[rest of post snipped]

Response:

Unfortunately this happens a lot with drs saying it’s all in your head. Happened to me (have cd and Document other stuff) and a lot of others here.  Go to a new dr.  Try to find one either through the www.ccfa.org site or by a learning hospital in your area or other people you know who might know someone with a gi that pays attention.  You can also post here, city and state only please, and maybe someone on the group lives near you and can make a good reccommendation.  If she has no diarrhea or bleeding than saying she has a bowel inflamation may not be the right  term.  The kind of foods you mention that seem to help her are fiber foods mostly.  Does she get constipated when she gets the pain?  Post your city and state and ask the group if anyone knows a good dr in your area.  If you are not in the USA this group has wonderful people from all around the world.  UM MOM Susan

– Hide quoted text — Show quoted text – Thanks Susan; that was quick. She has no bleeding and no diarrhea but has bowel inflammation that, after eating a huge range of products, causes problems from mild discomfort to severe pain. She has been to a gi doc and had no satisfaction. The problem is not in his book, so it must be in her mind If she lives on juices and things like apple sauce, she gets better over a period of days but then she has to eat. She started the LCD but had an upset from boiled turnips, which are on the approved list. Rua There is a lot of things tat could cause these symptoms.  You say she doesn’t have any diarrhea but does she have any bleeding?  When you say she can eat this without problems and that with problems, what kind of problems do you mean?  From what you describe here could be anything or nothing. She might have a gi problem or she could be allergic to something in the foods you speak of.  The best think is to have her see a gi dr to have the tests to find out what is wrong.  Sorry I can’t be more help.  UM MOM Susan I have a friend who has some of the symptoms of Crohn’s. She has no diarrhea and some products, especially wheat, bother her intestines. There are so many unreported additives in foods, that it’s tough to know what does what. For example dried banana chips that claim to be banana only, and potato chips do bother her. She has no problem with even medium ripe bananas. In particular Trader Joe’s brand of potato chips has supposedly only potatoes, a vegetable oil and salt but this bothers her within a few hours, whereas home cooked and mashed potatoes do not bother her – at least within 4-5 hours. Turnips are on the LCD but they gave her distress within a few hours. Anyone recognize these symptoms? What is the time frame for measuring whether a food bothers the intestines? Probably it depends on the kind of food. Thanks Rua

Response:

I have a friend who has some of the symptoms of Crohn’s. She has no diarrhea and some products, especially wheat, bother her intestines. There are so many unreported additives in foods, that it’s tough to know what does what. For example dried banana chips that claim to be banana only, and potato chips do bother her. She has no problem with even medium ripe bananas. In particular Trader Joe’s brand of potato chips has supposedly only potatoes, a vegetable oil and salt but this bothers her within a few hours, whereas home cooked and mashed potatoes do not bother her – at least within 4-5 hours. Turnips are on the LCD but they gave her distress within a few hours. Anyone recognize these symptoms? What is the time frame for measuring whether a food bothers the intestines? Probably it depends on the kind of food. Thanks Rua

Response:

There is a lot of things tat could cause these symptoms.  You say she doesn’t have any diarrhea but does she have any bleeding?  When you say she can eat this without problems and that with problems, what kind of problems do you mean?  From what you describe here could be anything or nothing.  She might have a gi problem or she could be allergic to something in the foods you speak of.  The best think is to have her see a gi dr to have the tests to find out what is wrong.  Sorry I can’t be more help.  UM MOM Susan

– Hide quoted text — Show quoted text – I have a friend who has some of the symptoms of Crohn’s. She has no diarrhea and some products, especially wheat, bother her intestines. There are so many unreported additives in foods, that it’s tough to know what does what. For example dried banana chips that claim to be banana only, and potato chips do bother her. She has no problem with even medium ripe bananas. In particular Trader Joe’s brand of potato chips has supposedly only potatoes, a vegetable oil and salt but this bothers her within a few hours, whereas home cooked and mashed potatoes do not bother her – at least within 4-5 hours. Turnips are on the LCD but they gave her distress within a few hours. Anyone recognize these symptoms? What is the time frame for measuring whether a food bothers the intestines? Probably it depends on the kind of food. Thanks Rua

Response:

Thanks Susan; that was quick. She has no bleeding and no diarrhea but has bowel inflammation that, after eating a huge range of products, causes problems from mild discomfort to severe pain. She has been to a gi doc and had no satisfaction. The problem is not in his book, so it must be in her mind If she lives on juices and things like apple sauce, she gets better over a period of days but then she has to eat. She started the LCD but had an upset from boiled turnips, which are on the approved list. Rua

– Hide quoted text — Show quoted text – There is a lot of things tat could cause these symptoms.  You say she doesn’t have any diarrhea but does she have any bleeding?  When you say she can eat this without problems and that with problems, what kind of problems do you mean?  From what you describe here could be anything or nothing. She might have a gi problem or she could be allergic to something in the foods you speak of.  The best think is to have her see a gi dr to have the tests to find out what is wrong.  Sorry I can’t be more help.  UM MOM Susan I have a friend who has some of the symptoms of Crohn’s. She has no diarrhea and some products, especially wheat, bother her intestines. There are so many unreported additives in foods, that it’s tough to know what does what. For example dried banana chips that claim to be banana only, and potato chips do bother her. She has no problem with even medium ripe bananas. In particular Trader Joe’s brand of potato chips has supposedly only potatoes, a vegetable oil and salt but this bothers her within a few hours, whereas home cooked and mashed potatoes do not bother her – at least within 4-5 hours. Turnips are on the LCD but they gave her distress within a few hours. Anyone recognize these symptoms? What is the time frame for measuring whether a food bothers the intestines? Probably it depends on the kind of food. Thanks Rua

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Question:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Quick follow-up.  He passed the month mark (2nd adriamycin treatment) and the bloodwork results came back from the lab just as I was leaving the vet after picking him up.  Red blood cell count is still low, but not getting any lower, everything else looked good.  He’s still eating like a horse, has lots of energy, no nausea, and generally in pretty good shape, it appears.  The vet said he’s definitely not one of the 20% that won’t respond, so we’ve got a couple more months of chemo to go, then we’ll see what happens, but I think it’s going to turn out well. brian — If you want to reply to this message by mail, you will

Response:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  

Yeah, our vet said 18 months is the mean survival time now, so it kinda sucked. But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Cool!  That’s what we’re hoping for.  Of course, cancer can be totally random, but we’re hoping it’ll be good in a month (the turning point for lymphoma, it appears), then it should be good for a while longer…. Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able!

Yep, chemo sounds like it’s gonna be a pain, but we have to do what we can.  He went for his IV today and is doing good apparently (I pick him up later today), and it looks like it’s IV the first time, next 2 weeks a shot, then IV again (then next 2 weeks a shot, etc.).  Have to give him pills in between vet visits.  Gotta find out all the names of what he’s going to get so I can see if it’s the standard protocol…. If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/

We’ll definitely check it out! Good luck to you! debbe and mira

Thanks much…. brian — If you want to reply to this message by mail, you will

Response:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years   Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able! If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/ Good luck to you! debbe and mira – Hide quoted text — Show quoted text – Good luck. Prognosis sounds good! Keep us posted. Karen Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

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Good luck. Prognosis sounds good! Keep us posted. Karen

Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

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Good luck. Prognosis sounds good! Keep us posted. Karen – Hide quoted text — Show quoted text – We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  …. Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

Response:

We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  ….

Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

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[snipped] Thanks for the update.  Please let me know the results of the 11/1 follow-up.

We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  The vet said there was a mass in the spleen (mast cell tumor or lymphosarcoma – he had mentioned lymphosarcoma as a possibility before, so this didn’t come as a surprise), so he did some bloodwork and got the results Monday. Turns out he’s still anemic and Aid he has a high calcium level (both of which point to either mast cell tumor or lymphosarcoma).   He recommended a splenectomy and from what I have read on the web, that’s pretty much the first step of the treatment (since he had a mass in the spleen, there’s not much choice in the matter, really).  So he went in today for it and we’ll have the lab results back by the end of the week.   If it’s mast cell tumor, treatment seems to be prednisolone and if it’s lymphosarcoma, it’ll be chemotherapy for a month to see how he responds (if a cat w/lymphosarcoma doesn’t respond well to the first round, further treatments are probably unnecessary since it just won’t help, the vet said (in his experience)). Seems IBD is either a precursor to either of these conditions or these conditions get misdiagnosed as IBD sometimes.  Anyway, we feel confident he’ll come through this well ‘cos he seems so healthy otherwise.  Could be lots worse, I suppose. brian — If you want to reply to this message by mail, you will

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We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Nope, not yet, but will soon – we’ll probably have to take him in again in a week or so just to have him checked out to see if the vet thinks he’s making progress, so we’ll have him do it then.  Thanks for the info…. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method.

Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. – Hide quoted text — Show quoted text – Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the article source info….

Thanks for the update.  Please let me know the results of the 11/1 follow-up. Good luck. Phil.

Response:

Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil.

Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the info…. brian — If you want to reply to this message by mail, you will

Response:

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck.

I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method. Thanks for the reply. brian — If you want to reply to this message by mail, you will

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We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible.

Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Response:

I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  

Hmm, didn’t know that – from what I read, it seemed like hypothyroid could occur on its own (rare, but it happens).  OK, since a few others think he needs to get more accurate T4 testing, I think we’ll go that route then. Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Yeah, the whole James Herriot model. Laura

That’s exactly what I was thinking… Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

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Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the 60’s, 70’s, & even up to 10 years ago, it seems to me. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text –  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists. Surprisingly, they do exist, although they’re usually associated with veterinary colleges. I’d check with the vet about a consult with one at whatever college is closest. As far as which ones have them, Michigan State, UC Davis, Cornell, University of Florida, Kansas State, Texas A&M and I would assume UPenn all have them. Laura — Time flies like an arrow; fruit flies like a banana. -Groucho Marx

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Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the slr chronograph tag heuer replica 60’s, 70’s, & even up to 10 years ago, it seems to me. I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura

And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

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– Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies….

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. Phil – Hide quoted text — Show quoted text – brian — If you want to reply to this message by mail, you will

Response:

Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior".   We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?)   and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

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I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists.  Good luck – I hope it gets figured out, so that his treatment can help him a lot more. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to click for source hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

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Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Quick follow-up.  He passed the month mark (2nd adriamycin treatment) and the bloodwork results came back from the lab just as I was leaving the vet after picking him up.  Red blood cell count is still low, but not getting any lower, everything else looked good.  He’s still eating like a horse, has lots of energy, no nausea, and generally in pretty good shape, it appears.  The vet said he’s definitely not one of the 20% that won’t respond, so we’ve got a couple more months of chemo to go, then we’ll see what happens, but I think it’s going to turn out well. brian — If you want to reply to this message by mail, you will

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Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  

Yeah, our vet said 18 months is the mean survival time now, so it kinda sucked. But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Cool!  That’s what we’re hoping for.  Of course, cancer can be totally random, but we’re hoping it’ll be good in a month (the turning point for lymphoma, it appears), then it should be good for a while longer…. Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able!

Yep, chemo sounds like it’s gonna be a pain, but we have to do what we can.  He went for his IV today and is doing good apparently (I pick him up later today), and it looks like it’s IV the first time, next 2 weeks a shot, then IV again (then next 2 weeks a shot, etc.).  Have to give him pills in between vet visits.  Gotta find out all the names of what he’s going to get so I can see if it’s the standard protocol…. If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/

We’ll definitely check it out! Good luck to you! debbe and mira

Thanks much…. brian — If you want to reply to this message by mail, you will

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Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years   Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able! If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/ Good luck to you! debbe and mira – Hide quoted text — Show quoted text – Good luck. Prognosis sounds good! Keep us posted. Karen Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

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Good luck. Prognosis sounds good! Keep us posted. Karen

Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

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Good luck. Prognosis sounds good! Keep us posted. Karen – Hide quoted text — Show quoted text – We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  …. Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

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We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  ….

Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

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[snipped] Thanks for the update.  Please let me know the results of the 11/1 follow-up.

We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  The vet said there was a mass in the spleen (mast cell tumor or lymphosarcoma – he had mentioned lymphosarcoma as a possibility before, so this didn’t come as a surprise), so he did some bloodwork and got the results Monday. Turns out he’s still anemic and he has a high calcium level (both of which point to either mast cell tumor or lymphosarcoma).   He recommended a splenectomy and from what I have read on the web, that’s pretty much the first step of the treatment (since he had a mass in the spleen, there’s not much choice in the matter, really).  So he went in today for it and we’ll have the lab results back by the end of the week.   If it’s mast cell tumor, treatment seems to be prednisolone and if it’s lymphosarcoma, it’ll be chemotherapy for a month to see how he responds (if a cat w/lymphosarcoma doesn’t respond well to the first round, further treatments are probably unnecessary since it just won’t help, the vet said (in his experience)). Seems IBD is either a precursor to either of these conditions or these conditions get misdiagnosed as IBD sometimes.  Anyway, we feel confident he’ll come through this well ‘cos he seems so healthy otherwise.  Could be lots worse, I suppose. brian — If you want to reply to this message by mail, you will

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We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Nope, not yet, but will soon – we’ll probably have to take him in again in a week or so just to have him checked out to see if the vet thinks he’s making progress, so we’ll have him do it then.  Thanks for the info…. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method.

Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. – Hide quoted text — Show quoted text – Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the info….

Thanks for the update.  Please let me know the results of the 11/1 follow-up. Good luck. Phil.

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Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil.

Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the info…. brian — If you want to swiss replica rolex watch reply to this message by mail, you will

Response:

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck.

I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method. Thanks for the reply. brian — If you want to reply to this message by mail, you will

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We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible.

Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Response:

I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  

Hmm, didn’t know that – from what I read, it seemed like hypothyroid could occur on its own (rare, but it happens).  OK, since a few others think he needs to get more accurate T4 testing, I think we’ll go that route then. Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Yeah, the whole James Herriot model. Laura

That’s exactly what I was thinking… Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

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Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the 60’s, 70’s, & even up to 10 years ago, it seems to me. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text –  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists. Surprisingly, they do exist, although they’re usually associated with veterinary colleges. I’d check with the vet about a consult with one at whatever college is closest. As far as which ones have them, Michigan State, UC Davis, Cornell, University of Florida, Kansas State, Texas A&M and I would assume UPenn all have them. Laura — Time flies like an arrow; fruit flies like a banana. -Groucho Marx

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Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the 60’s, 70’s, & even up to 10 years ago, it seems to me. I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura

And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

Response:

– Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and link get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies….

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. Phil – Hide quoted text — Show quoted text – brian — If you want to reply to this message by mail, you will

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Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior".   We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?)   and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

Response:

I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists.  Good luck – I hope it gets figured out, so that his treatment can help him a lot more. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

Response:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Quick follow-up.  He passed the month mark (2nd adriamycin treatment) and the bloodwork results came back from the lab just as I was leaving the vet after picking him up.  Red blood cell count is still low, but not getting any lower, everything else looked good.  He’s still eating like a horse, has lots of energy, no nausea, and generally in pretty good shape, it appears.  The vet said he’s definitely not one of the 20% that won’t respond, so we’ve got a couple more months of chemo to go, then we’ll see what happens, but I think it’s going to turn out well. brian — If you want to reply to this message by mail, you will

Response:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  

Yeah, our vet said 18 months is the mean survival time now, so it kinda sucked. But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years  

Cool!  That’s what we’re hoping for.  Of course, cancer can be totally random, but we’re hoping it’ll be good in a month (the turning point for lymphoma, it appears), then it should be good for a while longer…. Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able!

Yep, chemo sounds like it’s gonna be a pain, but we have to do what we can.  He went for his IV today and is doing good apparently (I pick him up later today), and Get the Facts it looks like it’s IV the first time, next 2 weeks a shot, then IV again (then next 2 weeks a shot, etc.).  Have to give him pills in between vet visits.  Gotta find out all the names of what he’s going to get so I can see if it’s the standard protocol…. If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/

We’ll definitely check it out! Good luck to you! debbe and mira

Thanks much…. brian — If you want to reply to this message by mail, you will

Response:

Hi Brian, Things actually sound pretty positive.  I know some people are devastated when their pet is diagnosed with lymphoma–I remember when the vet told us on Dec 10, 1998, that our then 11 1/2 year old Mira had GI lymphoma.  The vet said that lymphoma was one of the "better" cancers, because it could be treated–that didn’t sound very encouraging to me, especially when we were told that the average survival time was said to be 12-14 months, even with chemo.  But since Mira was a really strong cat who had been exceptionally healthy all of her life, we hoped for the best when we started chemo–and next month, we’ll celebrate 4 years   Of course, she now has other problems (hyper-T, IBD and steroid-induced diabetes), but all of those are controlled with medication and insulin.  After chemo, anything seems do-able! If you’d like more information, there’s a yahoo group with over 500 members who have cats with lymphoma at: http://groups.yahoo.com/group/feline_lymphoma/ Good luck to you! debbe and mira – Hide quoted text — Show quoted text – Good luck. Prognosis sounds good! Keep us posted. Karen Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

Response:

Good luck. Prognosis sounds good! Keep us posted. Karen

Thanks, will do.  And, yeah, I think he’ll pull through pretty well – doesn’t really seem "sick" at all, no bone marrow involvement, very small section of intestine affected, only 9 years old – those seem to be good factors in his recovery and future health.  If we can just keep our other little stupid (she really is kinda stupid – other people have mentioned it.  Stupid but sweet.) cat from jumping on him every time he comes back from the vet (she’s jealous – we tell her she could go get a splenectomy or chemo and she looks at us like "Well, OK, if it means I’ll get treated like he does"), things would be pretty decent. BTW, this group’s been pretty informative searching through the history using google, so just wanted to say thanks to all who’ve posted before… Just found out today that chemo isn’t ridiculously expensive (the vet hadn’t mentioned a cost, so I started searching), so that’s a good thing. brian — If you want to reply to this message by mail, you will

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Good luck. Prognosis sounds good! Keep us posted. Karen – Hide quoted text — Show quoted text – We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  …. Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

Response:

We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  ….

Just a followup to my own post.  He had a splenectomy, came out of it pretty well, spleen was enlarged 3 or 4 times normal size, a small part (an inch or so) of the small intestine was reddish and thickened, so he took that out too (along with a 2-3 inch margin on each side).  Sent them in to the lab, and results came back as lymphosarcoma.  Blood work showed that his bone marrow was OK, so that’s good.  He’s pretty healthy, so hopefully he’ll be able to come out of all this OK.  Chemo starts tomorrow, so hopefully in a month or so, he’ll be back in decent shape and stay that way for a while. brian — If you want to reply to this message by mail, you will

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[snipped] Thanks for the update.  Please let me know the results of the 11/1 follow-up.

We took him in on the 11/16 and he had lost more weight (down to 11.5 lbs), and had an enlarged spleen (on the X-rays from the 2nd vet, she said his spleen was slightly enlarged, but nothing really abnormal).  The vet said there was a mass in the spleen (mast cell tumor or lymphosarcoma – he had mentioned lymphosarcoma as a possibility before, so this didn’t come as a surprise), so he did some bloodwork and got the results Monday. Turns out he’s still anemic and he has a high calcium level (both of which point to either mast cell tumor or lymphosarcoma).   He recommended a splenectomy and from what I have read on the web, that’s pretty much the first step of the treatment (since he had a mass in the spleen, there’s not much choice in the matter, really).  So he went in today for it and we’ll have the lab results back by the end of the week.   If it’s mast cell tumor, treatment seems to be prednisolone and if it’s lymphosarcoma, it’ll be chemotherapy for a month to see how he responds (if a cat w/lymphosarcoma doesn’t respond well to the first round, further treatments are probably unnecessary since it just won’t help, the vet said (in his experience)). Seems IBD is either a precursor to either of these conditions or these conditions get misdiagnosed as IBD sometimes.  Anyway, we feel confident he’ll come through this well ‘cos he seems so healthy otherwise.  Could be lots worse, I suppose. brian — If you want to reply to this message by mail, you will

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We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Nope, not yet, but will soon – we’ll probably have to take him in again in a week or so just to have him checked out to see if the vet thinks he’s making progress, so we’ll have him do it then.  Thanks for the info…. brian — If you want to reply to this message by mail, you will

Response:

– Hide quoted text — Show quoted text – Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method.

Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. – Hide quoted text — Show quoted text – Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil. Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the info….

Thanks for the update.  Please let me know the results of the 11/1 follow-up. Good luck. Phil.

Response:

Wise decision!  The fT4ED assay is excellent for diagnosing occult hyperthyroidism and/or in cases where T4 dips in and out of the normal range. Good luck. Phil.

Just a follow-up – we took him in to another vet for a 2nd opinion and here’s what we found and what they diagnosed: He had gained back about 2/3 lb in 2 weeks. He wasn’t anemic anymore. He didn’t have parasites (fecal test). He didn’t have anything abnormal looking in the X-rays she took. So the vet said she didn’t think he had any thyroid problems because he was gaining weight and his readings for T3 and T4 weren’t even close to borderline.  She said it was possible he might still develop thyroid problems, but it looks like IBD is the culprit right now.  She said to stay on the Prednisolone, gave us Metronidazole, and some Eukanuba Low Residue diet for him (both our cats eat Science Diet Feline Maintenance Light right now). I called our regular vet and he said that the Metronidazole was mainly used to firm up diarrhea (the 2nd vet said it could help the IBD since it was an antibiotic), so he didn’t think we needed to use it (his stool has been OK all along, no diarrhea).  He said we should go to every other day on the Prednisolone because of dependence and diabetes issues, which we knew about.  He said the hypoallergenic diet would probably be good (we haven’t started it yet because feeding 2 cats 3x/day 2 separate diets is kind of a pain in the butt and we’re gonna be outta town in a couple of weeks).  We’ll probably start him on it once we get back unless he starts barfing more often (about once/week now).  He said that the weight gain was good, as was the anemia going away, and he wants to see him again around 11/1 to check on everything.  So it looks like it’s IBD for now – a pain in the butt, but not as bad as it could be. Thanks to all for the info…. brian — If you want to reply to this message by mail, you will

Response:

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck.

I was thinking of having him do this test – it does seem like its able to make a pretty accurate diagnosis.  I think the vet just isn’t considering hyperthyroidism as a very likely possibility right now (he said his symptoms aren’t severe enough).  We’ll give him a call and see when he can re-test using the dialysis method. Thanks for the reply. brian — If you want to reply to this message by mail, you will

Response:

We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible.

Did your vet run the test which also checks for free T3/T4? It’s more accurate then normal values.

Response:

I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  

Hmm, didn’t know that – from what I read, it seemed like hypothyroid could occur on its own (rare, but it happens).  OK, since a few others think he needs to get more accurate T4 testing, I think we’ll go that route then. Thanks for the reply. brian — If you want to reply to this message by mail, you will

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– Hide quoted text — Show quoted text – I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Yeah, the whole James Herriot model. Laura

That’s exactly what I was thinking… Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

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Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the 60’s, 70’s, & even up to 10 years ago, it seems to me. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text –  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists. Surprisingly, they do exist, although they’re usually associated with veterinary colleges. I’d check with the vet about a consult with one at whatever college is closest. As far as which ones have them, Michigan State, UC Davis, Cornell, University of Florida, Kansas State, Texas A&M and I would assume UPenn all have them. Laura — Time flies like an arrow; fruit flies like a banana. -Groucho Marx

Response:

Veterinary medicine is mirroring human med – in the specialties, diagnosis, & treatment lines – more & more.  A *huge* change since the 60’s, 70’s, & even up to 10 years ago, it seems to me. I agree. When I was growing up, a vet was just an all-purpose equivalent of a GP. It’s good to see animals getting specialty care finally. Laura

And, in many cases, even more general (at least outside of cities) – since a large animal vet would then set aside some hours for small animals.  A good friend in school – her father was a vet; they lived in the village, but he was mostly a large animal vet, who saw some pets in his practice. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon

Response:

– Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the important link issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies….

Speak to your vet about free T4 by equilibrium dialysis (fT4ED) – its the most accurate method of measuring fT4 and is more sensitive than standard T4 tests in assessing thyroid function -especially in sick cats whose T4 may be depressed due to disease. Good luck. Phil – Hide quoted text — Show quoted text – brian — If you want to reply to this message by mail, you will

Response:

Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior".   We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?)   and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

Response:

I would also pursue the thyroid route, esp. if you mean it was found to be enlarged when palpated.  Cats are only hyperthyroid; the only time they become hypothyroid is as a secondary condition – such as a result of over-treatment, etc.  How about consulting a vet internist – since I don’t think (though, who knows?) there are vet endocrinologists.  Good luck – I hope it gets figured out, so that his treatment can help him a lot more. Cathy — "Staccato signals of constant information…" ("The Boy in the Bubble")  Paul Simon – Hide quoted text — Show quoted text – Hello all, We don’t think our vet’s really on the right track diagnosing our cat’s behavior and would like to see if others think the same. We’ve got a 9 yr old cat who started spazzing (more than usual) mid-July – he started to run like hell out of the kitchen (like something was after him) into a corner of our living room (stopping on the way to lick his sides, cleaning himself).  Then he’d proceed to groom himself for a *long* time.  He’d eventually fall asleep.  He didn’t want to play with our other cat and wouldn’t lie anywhere except that corner to sleep (at night, we stick them in our 2nd bedroom and he used to lie on the bed to sleep, but he’s been lying in the windowsill instead with his head facing the corner of the window).  He started barfing more than usual (both of ‘em eat too much occasionally and barf, but he started doing it more often and they were bile barfs, not food barfs and occasionally they were *huge*), so we thought "hairballs from excessive grooming" and gave them both Science Diet Hairball Control (they had been on S.D. Feline Maint. Light).  He didn’t get any better so we took him in to the vet around 9/1.  He prescribed prednisolone 5mg daily for a week, then every other day. Here’s where it gets weird – that didn’t work (still barfing a lot, still licking a lot), so we took him back in a week later and he found his bowels packed, so he said to take him off Hairball Control and had us start him on Laxatone.  2 weeks later, he’s still not any better, so we take him back in and get blood tests done.  A few days later, we take him in again ‘cos he barfed hugely again (yowled before he barfed like it was hurting him) and ask for blood tests.  He says his left thyroid is palpable on this visit, and we find out he’s lost 2.5 lbs (from 14.75 to 12.25) in the last 5 months (he’d been losing 1 lb/year due to us restricting his food – he had been 16-17 lbs and us & the vet decided he needed to get down to 14 lbs for health reasons) even though he was eating normally.  A day later, we find out he’s mildly anemic (possibly due to chronic bowel inflammation), and he’s diagnosed as having IBD and he wants to give him amitriptyline to control "obsessive grooming and behavior". We check the lab results and find out that his T4 and T3 levels are in the normal range and ask him about hyperthyroidism and he says it’s possible. We think that he has some classic signs of thyroid problems (are there cats with enlarged thyroids that *don’t* have hypo- or hyperthyroidism?) and the vet’s on the wrong track.  We’ve also found that the recommended dosage of prednisolone is 1mg/1lb, tapering down (the paper I read at www.maxshouse.com suggests a 5mg chew twice daily for 2 weeks, then 1 chew daily for 2 weeks, then 1 chew every other day for 4 weeks, or as needed for maintenance).  We did start him back on the chews once daily and it seemed to help a little bit (he’s out of the corner and starting to play with our other cat, but on a pretty limited basis), but we’re wondering if we should do 2 chews daily, then taper off like the report recommended (yeah, I need to call the vet and make sure it’s OK, and I’ll do that in the morning when they open) and also if IBD is really the Click Here issue or if he’s also got thyroid problems (I’ve read many places that other illnesses can keep T4 levels down even if they’ve got hyperthyroidism).  We’re probably going to give him a few more weeks to see if he gets better, but we’re also probably going to take him to a 2nd vet to see if they can diagnose him any better. If anybody has any opinions, I’d love to hear ‘em.  Thanks for reading this far and thanks for any replies…. brian — If you want to reply to this message by mail, you will

Response:

Question:

Since just switching foods on a healthy dog almost always upsets their stomach, what happens when one starts putting their sick dog on all these natural foods, full of so many varieties and all a far deviation from their nomal diet?      

Response:

Since just switching foods on a healthy dog almost always upsets their stomach, what happens when one starts putting their sick dog on all these natural foods, full of so many varieties and all a far deviation from their nomal diet?

What natural foods?

Response:

I wonder if anyone can advise me on whether I should be adding seaweed supplement to my home cooked dog food?  My dogs are fed on ground lamb. chicken or sometimes beef.  They have half meat and half cooked brown rice.  I also give them a calcium supplement.  Should they also be having cooked vegetables?

Response:

Kelp/dulse are great sources of minerals.  I’d join a group that discusses home prepared dog food.  You can find many at yahoo.com  One is called totally_home_cooking, another is K9Nutrition, although there are many to choose from.  Veges are a great source of antioxidants, minerals and vitamins.  You can feed just about anything but onion.   It might also be good to read a few books on preparing food, two that come to mind are Pitcairn’s and one by Strombeck. buglady take out the dog before replying I wonder if anyone can advise me on whether I should be adding seaweed

supplement to my home cooked dog food?  My dogs are fed on ground lamb. chicken or sometimes beef.  They

have half meat and half cooked brown rice.  I also give them a calcium supplement.  Should they

also be having cooked vegetables?

Response:

I have had CD for about 25 years and have had 3 bowel resections. Lately I’m feeling tired. Part of the solution is to go to bed early (I know). I’m also taking CoEnyme Q10, which somone on this group suggested. Can annyone suggest which supplements I might try. Iv’e got a lump below my knee, my doctor said it wasn’t Crohns but …(fat inside), Also I’ve got a rash on the leg muscle. Thanks John

Response:

Watch for the ‘rash on the leg muscle’. I thought I had a rash, turned out to be erythema nodosum. Mark

– Hide quoted text — Show quoted text – I have had CD for about 25 years and have had 3 bowel resections. Lately I’m feeling tired. Part of the solution is to go to bed early (I know). I’m also taking CoEnyme Q10, which somone on this group suggested. Can annyone suggest which supplements I might try. Iv’e got a lump below my knee, my doctor said it wasn’t Crohns but …(fat inside), Also I’ve got a rash on the leg muscle. Thanks John

Response:

i suggest getting a biopsy on the lump or rash if possible.  i did not when i had such, and went thru a lot of pain and agony.  it was either polyderma gangrenousa or a vasculitis ulcer, but dx on a biopsy would have helped me greatly and helped avoid the suffering i have been thru the last 2 1/2 years.  the ulcer was only a symtom of a greater problem and issue that is STILL not resolved! jeff

– Hide quoted text — Show quoted text – I have had CD for about 25 years and have had 3 bowel resections. Lately I’m feeling tired. Part of the solution is to go to bed early (I know). I’m also taking CoEnyme Q10, which somone on this group suggested. Can annyone suggest which supplements I might try. Iv’e got a lump below my knee, my doctor said it wasn’t Crohns but …(fat inside), Also I’ve got a rash on the leg muscle. Thanks John

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LOL  I can picture that! -Jeff

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Pardon my ignorance, but what are proanthocyandins? John

Proathocyanidins are a subgroup of polyphenols.They are flavonoids. It is fantastic stuff….you will have heard of it as pine bark extract or as grape seed extract.Here is an example of the potency these have… Proflavanol is USANA’s grape seed extract. Proflavanol is 50 times more potent than vitamin E and 20 times more potent than vitamin C when used with the Usana Essential Nutritionals (Mega Antioxidant, Chelated Mineral, Optomega, and Actical)  That was quaoted from Dr. raystrands sight author of BIONUTRITION With this stuff I was able to say good bye to my perianal abceses within 3 weeks time….somethin I had been tryin to do for over 2 years….The doctors had not given me much of an alternative…live with them or go on the bag. It’s been over 3 years and i still have not had an abcess since….where as before i was goin in and gettin sliced every month.And the Proflavanol I’m sure was a big part in it.People usually just refer to it as the Turbocharger. – Hide quoted text — Show quoted text – Hi Jack,   You asked, what are people using besides medicines?   I’ve been using supplements for the last 18 months and have had great results. I take: – A good quality multi-vitamin (Country Life) – Colloidal trace minerals – Vitamin C  1 – 1000mg cap. 4 times daily   My blood work for the last year has been excellent, with everything in range. The first normal results in 12 years. My sed. rate is  3 instead of  50 !   A colonoscopy showed no sign of disease, even into the ileum. Another first!   I no longer have any CD symptoms. I eat what ever I like again. I feel truly well. I’ll stop short of saying I’m cured because it’s only been a year so far. But I’m confident that I will stay in remission …so long as I continue to provide my body with the materials it requires to run right. There is hope. William CD Class of 89-99′ Howdy Jack….. I’ve been off the meds for 5 years now with the help of supplementing my nutrition. I take the USANA Essentials because it is simply the best multi-vitamin on the market, along with proanthocyandins, and a few other extra’s. Before you buy.

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Lil prehistoric cyndacins that eat anything in sight..RUN! RUN! *** ouch! I have a leg cramp!!!        ; )    eMi who has no idea what they are but couldn’t resist that one – Hide quoted text — Show quoted text – Pardon my ignorance, but what are proanthocyandins? John Hi Jack,   You asked, what are people using besides medicines?   I’ve been using supplements for the last 18 months and have had great results. I take: – A good quality multi-vitamin (Country Life) – Colloidal trace minerals – Vitamin C  1 – 1000mg cap. 4 times daily   My blood work for the last year has been excellent, with everything in range. The first normal results in 12 years. My sed. rate is  3 instead of  50 !   A colonoscopy showed no sign of disease, even into the ileum. Another first!   I no longer have any CD symptoms. I eat what ever I like again. I feel truly well. I’ll stop short of saying I’m cured because it’s only been a year so far. But I’m confident that I will stay in remission …so long as I continue to provide my body with the materials it requires to run right. There is hope. William CD Class of 89-99′ Howdy Jack….. I’ve been off the meds for 5 years now with the help of supplementing my nutrition. I take the USANA Essentials because it is simply the best multi-vitamin on the market, along with proanthocyandins, and a few other extra’s. Before you buy.

Response:

Pardon my ignorance, but what are proanthocyandins? John – Hide quoted text — Show quoted text – Hi Jack,   You asked, what are people using besides medicines?   I’ve been using supplements for the last 18 months and have had great results. I take: – A good quality multi-vitamin (Country Life) – Colloidal trace minerals – Vitamin C  1 – 1000mg cap. 4 times daily   My blood work for the last year has been excellent, with everything in range. The first normal results in 12 years. My sed. rate is  3 instead of  50 !   A colonoscopy showed no sign of disease, even into the ileum. Another first!   I no longer have any CD symptoms. I eat what ever I like again. I feel truly well. I’ll stop short of saying I’m cured because it’s only been a year so far. But I’m confident that I will stay in remission …so long as I continue to provide my body with the materials it requires to run right. There is hope. William CD Class of 89-99′ Howdy Jack….. I’ve been off the meds for 5 years now with the help of supplementing my nutrition. I take the USANA Essentials because it is simply the best multi-vitamin on the market, along with proanthocyandins, and a few other extra’s.

Before you buy.

Response:

– Hide quoted text — Show quoted text – Hi Jack,   You asked, what are people using besides medicines?   I’ve been using supplements for the last 18 months and have had great results. I take: – A good quality multi-vitamin (Country Life) – Colloidal trace minerals – Vitamin C  1 – 1000mg cap. 4 times daily   My blood work for the last year has been excellent, with everything in range. The first normal results in 12 years. My sed. rate is  3 instead of  50 !   A colonoscopy showed no sign of disease, even into the ileum. Another first!   I no longer have any CD symptoms. I eat what ever I like again. I feel truly well. I’ll stop short of saying I’m cured because it’s only been a year so far. But I’m confident that I will stay in remission …so long as I continue to provide my body with the materials it requires to run right. There is hope. William CD Class of 89-99′

Howdy Jack….. I’ve been off the meds for 5 years now with the help of supplementing my nutrition. I take the USANA Essentials because it is simply the best multi-vitamin on the market, along with proanthocyandins, and a few other extra’s.

Response:

Interesting list there.  I’ve taken everything on it except boswellia, bromelain and glycosaminoglycans (I think).  Experience (for what it’s worth): Vitamins:  The best I’ve found, mostly due to low-intolerance complications is FSC Liquid gel multivitamins and minerals.  A very wide range of nutrients including fish oil.  It made a difference even when I could eat vegetables; now I have this feeling I’d be dead of scurvy without, or something. Glutamine:  I used it etensively at one time; good for waking up properly for a time and slowing down diarrhoea; however I find (as my condition has deteriorated) that, as with corn starch and bananas before it, the slowing down leads to medium-term inflammation.  I still use very small amounts to deal with bad days.  Say 0.5g at a time, twice daily.  Marginal relief. Possibly taking very large amounts could strengthen the bowel to the point where it would work; I know this is done by some people but haven’t dared … yet. Probiotics:  Due to lactose and sugar intolerance I had to stop taking yoghurt for around a year; a product is now available from Provamel: YOFU soya yoghurt.  I’ve returned to my normal weight since eating it daily. Another probiotic is Fructo-oligosaccharide.  I tried it and bloated up extremely painfully, but it might be alright in the constipated stage, if taken in moderation (I should have thought of that first).  I have also tried bacterial spore pills, but have yet to find a product which didn’t contain something like maltodextrins, which of course laid me low for a few days (should have read the small print first). I have recently been advised that Cis-9-Cetyl Myristoleate may be the answer to most of my problems (!), but getting hold of it is difficult and expensive. I am also told that Methyl Sulphonyl Methane should have the same effect, but powerfully good though it is for associated rheumatics etc., it makes no difference to bowel inflammation in my case. As to fish oil (and flax, borage and this website evening primrose) in larger quantities: against all reason it seems to make me worse, conjunctivitis and rosacea in particular but also some deterioration in the bowel.  Perhaps one day I will understand why… Slippery Elm bark appears to help, though I wouldn’t have expected it before trying.  Also tastes good. Caveat:  This is just me and my Crohn’s.  Only CAUTIOUS personal experimentation can really tell you what will work for you.  And this may take years. All the best. Niall (Self-appointed Guinea-pig Extraordinaire) – Hide quoted text — Show quoted text – My doctor hasn’t really pointed me to any supplements, so I wanted to get an idea of what people are taking? The web site www.tnp.com had the following list of things under Ulcerative Colitis which we may be short on and need to supplement: Vitamins A, B12, C, D, E, and K folate calcium copper magnesium selenium zinc. They go on to talk about Fish Oil, which they say may or may not be an effective treatment.  Also, Probiotics – anyone have any experience with this?  Finally, Glutamine, boswellia, bromelain and glycosaminoglycans are mentionned as having potential, but no proof yet of any effect. (I find this web site useful for telling me what clinical tests have been done on the various natural remedies… too many claims, IMO, not enough proof) What are people using, besides medication? cd_jack Before you buy.

Response:

- Hide quoted text — Show quoted text – My doctor hasn’t really pointed me to any supplements, so I wanted to get an idea of what people are taking? The web site www.tnp.com had the following list of things under Ulcerative Colitis which we may be short on and need to supplement: Vitamins A, B12, C, D, E, and K folate calcium copper magnesium selenium zinc. They go on to talk about Fish Oil, which they say may or may not be an effective treatment.  Also, Probiotics – anyone have any experience with this?  Finally, Glutamine, boswellia, bromelain and glycosaminoglycans are mentionned as having potential, but no proof yet of any effect. (I find this web site useful for telling me what clinical tests have been done on the various natural remedies… too many claims, IMO, not enough proof) What are people using, besides medication? cd_jack

Howdy Jack…There is no doubt about it us with IBD are lacking in nutrients. Most people even who are not sick arre lacking in nutrition.We are a malnourished society and spend way too much time on our butts, hence the rapid onspread of chronic diseases. Between diet, and supplementation of that diet, and being more active I have stayed off the meds for 5 years. I finally listened to what people like Colgan were sayin and lifes been a big improvement ever since.I no longer look at supplementing at just what is good for my crohn’s but good for my over all health.Especially since we seem to be more prone for stuff like colon cancer, eye problems,bone and joint problems, fatigue,diabetes, etc.It’s like they say it is so much easier to prevent than it is to reverse damge.

Response:

My doctor hasn’t really pointed me to any supplements, so I wanted to get an idea of what people are taking? The web site www.tnp.com had the following list of things under Ulcerative Colitis which we may be short on and need to supplement: Vitamins A, B12, C, D, E, and K folate calcium copper magnesium selenium zinc. They go on to talk about Fish Oil, which they say may or may not be an effective treatment.  Also, Probiotics – anyone have any experience with this?  Finally, Glutamine, boswellia, bromelain and glycosaminoglycans are mentionned as having potential, but no proof yet of any effect. (I find this web site useful for telling me what clinical tests have been done on the various natural remedies… too many claims, IMO, not enough proof) What are people using, besides medication? cd_jack Before you buy.

Response:

I’m all for having studies done that can test the efficacy and safety of nutritional supplements. And I’m sure there are studies out there only I don’t know of any cohesive web sites where this information might be gathered, unlike some of the medical research web sites. In any case I try to stick to standard and traditional nutritional principles. I am really skeptical about some of these new fangled products that make specific claims and there is little real scientific evidence to support their claims. But science HAS shown the efficacy of many nutritional products such as probiotics, antioxidants, Beta-carotene. folic acid, vitamin E and many other nutrients. I try to stick to products that contain known nutritional ingredients that are essential for proper health. I also look for food based products rather than synthesized ones. I believe this approach can help maximize the effectiveness and also minimize any potential problems. Regards, Jeff 2

– Hide quoted text — Show quoted text – In view of the discussions about supplements, I found it interesting that an article in the May AARP Bulletin speaks to that subject. It appears that the FDA is only concerned about the quality of the product. The critics of the proposed rulings are concerned that saftey in use and side effects are not addressed. A quote from the piece "The real issue is that dietary supplements should be shown to be safe and ck replica watches effective just like over-the-counter drugs"   "I don’t know why we don’t call these compounds drugs. They are drugs. They’re just naturally occurring" It is agreed that a lot of the supplements are benificial. The problem stems from the fact that a lot of the claims made are unproven and some of this stuff can be quite harmful. At least the FDA is making a start towards some sort of control of supplements. ___ Blue Wave/DOS v2.30

Response:

In view of the discussions about supplements, I found it interesting that an article in the May AARP Bulletin speaks to that subject. It appears that the FDA is only concerned about the quality of the product. The critics of the proposed rulings are concerned that saftey in use and side effects are not addressed. A quote from the piece "The real issue is that dietary supplements should be shown to be safe and effective just like over-the-counter drugs"   "I don’t know why we don’t call these compounds drugs. They are drugs. They’re just naturally occurring" It is agreed that a lot of the supplements are benificial. The problem stems from the fact that a lot of the claims made are unproven and some of this stuff can be quite harmful. At least the FDA is making a start towards some sort of control of supplements. ___ Blue Wave/DOS v2.30

Response:

It appears that the FDA is only concerned about the quality of the product. The critics of the proposed rulings are concerned that saftey in use and side effects are not addressed. A quote from the piece "The real issue is that dietary supplements should be shown to be safe and effective just like over-the-counter drugs"   "I don’t know why we don’t call these compounds drugs. They are drugs. They’re just naturally occurring"

You, or maybe the AARP article, imply that the FDA is somehow shirking its duty in regulating supplements. In fact, it is specifically prohibited by law from doing so by the Dietary Supplements Health and Education Act of 1994 (DSHEA). You can see more about this at:     http://www.cfsan.fda.gov/~dms/dietsupp.html Except in extreme cases, like people dropping dead all across the country from ephedrine use or misuse, the FDA is effectively powerless to regulate supplements. Even in the case of ephedrine, you’ll notice that the FDA has only jawboned about it, not banned its use. Ephedrine is in bad odor now, but it’ll come back. Wayne Marsh       Minneapolis, Minnesota, USA

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I am a distributor for USANA which is a little more than 6 years old. Leslie

Response:

I am a distributor for USANA which is a little more than 6 years old. Leslie

Whoopdedo for you.  According to the SEC filing by USANA (that is, the company’s OWN figures), the average USANA dealer makes less than $1000 a year *gross*, which is little more than the average "investment." USANA is a multi-level-marketing scam designed to dupe "downline" distributors into buying an overpriced product (which is in most cases a worthless product, and at best a standard vitamin supplement) for personal use through peddling fantasies of easy money and entrepeneurial nirvana.   If you want to make money, you’d be a lot better of with a real job. Several acolytes of MLM cults will now write in with nasty comments.  Read their posts carefully.  They will not provide any verifiable figures showing that there is real money to be made in this kind of business.  They will use the glazed-eyed language of religious cultism which keeps these pyramid schemes going.  They will make anecdotal claims to be raking in the bucks, but when pressed for evidence (tax returns or SEC filings are the gold standards) they will bluster and bluff or withdraw. If you understand how MLM companies are structured, you will understand how anyone who gets in the chain below the very top levels is doomed to lose their money.  A six year old MLM company is like a six year old loaf of bread. And what did you think, that by posting your status as a USANA distributor to this newsgroup (it’s called "SPAM" by the way, and it is against the charter of most ISPs) people would rush to sign up to buy their overpriced useless supplements from you? Half the people on this list are already USANA distributors (or whatever distributors) themselves — that’s why they come here to sell, and also why they can’t think rationally about alternative quack medicine.  Enjoy your thousand dollar collection of nutritional supplements — your family will be taking them for a long time. AF – Hide quoted text — Show quoted text –

Response:

Buy your supplements locally – refuse to buy from spammers where you also get stuck for S&H charges. — Carol …. *Jane Fonda Virus – Attacks your hard drives FAT.* …

: I am a distributor for USANA which is a little more than 6 years old. : : Leslie : :

Response:

I am a distributor for USANA which is a little more than 6 years old. Leslie

Response:

I am a distributor for USANA which is a little more than 6 years old. Leslie

Whoopdedo for you.  According to the SEC filing by USANA (that is, the company’s OWN figures), the average USANA dealer makes less than $1000 a year *gross*, which is little more than the average "investment." USANA is a multi-level-marketing scam designed to dupe "downline" distributors into buying an overpriced product (which is in most cases a worthless product, and at best a standard vitamin supplement) for personal use through peddling fantasies of easy money and entrepeneurial nirvana.   If you want to make money, you’d be a lot better of with a real job. Several acolytes of MLM cults will now write in with nasty comments.  Read their posts carefully.  They will not provide any verifiable figures showing that there is real money to be made in this kind of business.  They will use the glazed-eyed language of religious cultism which keeps these pyramid schemes going.  They will make anecdotal claims to be raking in the bucks, but when pressed for evidence (tax returns or SEC filings are the gold standards) they will bluster and bluff or withdraw. If you understand how MLM companies are structured, you will understand how anyone who gets in the chain below the very top levels is doomed to lose their money.  A six year old MLM company is like a six year old loaf of bread. And what did you think, that by posting your status as a USANA distributor to this newsgroup (it’s called "SPAM" by the way, and it is against the charter of most ISPs) people would rush to sign up to buy their overpriced useless supplements from you? Half the people on this list are already USANA distributors (or whatever distributors) themselves — that’s why they come here to sell, and also why they can’t think rationally about alternative quack medicine.  Enjoy your thousand dollar collection of nutritional supplements — your family will be taking them for a long time. AF – Hide quoted text — Show quoted text –

Response:

Buy your supplements locally – refuse to buy from spammers where you also get stuck for S&H charges. — Carol …. *Jane Fonda Virus – Attacks your hard drives FAT.* …

: I am a distributor for USANA which is a little more than 6 years old. : : Leslie : :

Response:

Question:

On Wed, 06 Mar 2002 15:57:47 GMT, "nt" <n…@cox.net

 wrote: I have been lurking around, so guess I should introduce myself. My name is Wende, I have SLE,Raynauds,CREST,Sjogrens,MCTD, etc.

Just couldn’t stand to be like everyone else, could ya?  Had to go and be special and get more than two diseases at once! [note: KCat has not been into the catnip but probably should do so]

I was diagnosed a year and a half ago. After losing 30 lbs. because I could not swallow a lot of things.

went through that.  I got down to 104 at my lowest (not incl. a really bad day where I dropped 2 lbs within a few hours).  I have started gaining back in the past six months and feel so much better.  Still have throat-lock (as my ASL brother and I refer to it) but have been able to eat more.  I don’t know at what point my body decided I liked food again – it had been a long time without.  I’m glad to have the weight back (sorry folks, but true) and feel like if I got sick I have at least some room to work with.  Plus, I have more energy to workout now.

Having more blood, motility, endoscopies, dilatations, etc. tests.

which I’ve avoided and with the weight gain will continue to avoid. (sorry for the crummy english, must be tired)

the diagnosis was all of the above. Positive ANA, Sed rate off the scale, rheumatoid  high too, developed auto immune thyroid disease, take a number of drugs for all of the above. I am a house spouse, thank goodness! We have large dogs and grown children, birds, bunnies, possums,squirrels (other than myself)

Goodness – being a hausfrau can be a lot of work – especially with all the animals.

 It has been quite cold here in Oklahoma, for the last couple of weeks. It is the wind that will get you. It truly sweeps down the plane.

yup.  it warmed up today – almost too warm after such cold temps.  But if this were August I’d be loving it.  The azaleas are happy – the blooms are starting to pop open (Bev, they survived!)

I am enjoying your postings. Some of them are very insightful, and enlightening. Thank you. Stay warm. Wende

and some are just smart alek and silly.   Welcome and hope you are getting by with all those problems.  I know how frustrating it can be.  I imagine most of us are dealing with more than 2 diagnoses actually.  but I had to tease you. Take care and look forward to reading more from you. KCat the Verbose

Response:

Hey Lady,  Glad you are around.  This is great site for support.  I am 52 yrs., single, 1 adult daughter, was digniosed in 83 w/Collegen Vascular Disease, then SLE, then Major Depression. And over the yrs, drs have found other things(and denied others) like COPD, HBP, Diabeties, and MCTD, too. Oh also Reflux Syndrome and Thyroid conkout. Have 1 part siamese female cat who will not let me talk in my sleep or talk too loudly. so i think she is service cat. Also now have twin grandsons almost 2yrs. ). I was first lupus patient in Houston area to get on SSDI ‘84. Humildy is high most of time, have to stay close to air conditioner, and I paint, sew, draw, anything etc. Also on lots of meds. But still alive and kicking some $%%. "nt" <n…@cox.net

wrote in message

news:%%qh8.591$k81.11331@news2.east.cox.net… – Hide quoted text — Show quoted text -

I have been lurking around, so guess I should introduce myself. My name is Wende, I have SLE,Raynauds,CREST,Sjogrens,MCTD, etc. I was diagnosed a

year

and a half ago. After losing 30 lbs. because I could not swallow a lot of things. Having more blood, motility, endoscopies, dilatations, etc. tests. the diagnosis was all of the above. Positive ANA, Sed rate off the scale, rheumatoid  high too, developed auto immune thyroid disease, take a number of drugs for all of the above. I am a house spouse, thank goodness! We

have

large dogs and grown children, birds, bunnies, possums,squirrels (other

than

myself)   It has been quite cold here in Oklahoma, for the last couple of weeks.

It

is the wind that will get you. It truly sweeps down the plane.  I am enjoying your postings. Some of them are very insightful, and enlightening. Thank you. Stay warm. Wende

—–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Hi Wende – I am still scrambling through here and wanted to say hello. I am new here and newly diagnosed, coming here makes me feel "real". I love critters and you sound like you do also – cannot manage life without my babies. Kids are grown and I am also a "house spouse". One large dog, one tiny dog, four cats and two birds – - those are all inside – outside the list is endless! We even have our own bear – well, his den in our backyard… we rarely see him and that’s ok. What part of OK? Have hubby born there, in laws from there and I even lived in Ponca City for a time many many moons ago.  LOL – "Oklahoma, where the wind comes sweeping down the plain…." song popped into my head as you described winds…. March has brought plenty of wind to WA lately as well. Leslie Discombobulated Thoughts of an Adelpated Mind — "nt" <n…@cox.net

wrote in message

news:%%qh8.591$k81.11331@news2.east.cox.net… – Hide quoted text — Show quoted text -

I have been lurking around, so guess I should introduce myself. My name is Wende, I have SLE,Raynauds,CREST,Sjogrens,MCTD, etc. I was diagnosed a

year

and a half ago. After losing 30 lbs. because I could not swallow a lot of things. Having more blood, motility, endoscopies, dilatations, etc. tests. the diagnosis was all of the above. Positive ANA, Sed rate off the scale, rheumatoid  high too, developed auto immune thyroid disease, take a number of drugs for all of the above. I am a house spouse, thank goodness! We

have

large dogs and grown children, birds, bunnies, possums,squirrels (other

than

myself)   It has been quite cold here in Oklahoma, for the last couple of weeks.

It

is the wind that will get you. It truly sweeps down the plane.  I am enjoying your postings. Some of them are very insightful, and enlightening. Thank you. Stay warm. Wende

Response:

Hi wende:)))) glad to see you posting !   I am Bruce from Ontario  " one token male " thyroid auto , and others still to be confirmed! I live between two lovely lakes , in town now so only wild life  is my youngest girls` Geko ! From lurking you know how we are here and thats a good thing as Mattha would say. Smiles : Bruce On.

Response:

Hi Bruce, How is that chest today? BJ-in frigid SK. "rothnie browning" <browningandskenewordsmi…@rogers.com

wrote in message

news:yYsh8.42080$aFN.27552@news1.bloor.is… – Hide quoted text — Show quoted text -

Hi wende:)))) glad to see you posting !   I am Bruce from Ontario  " one token male " thyroid auto , and others still to be confirmed! I live

between

two lovely lakes , in town now so only wild life  is my youngest girls`

Geko

! From lurking you know how we are here and thats a good thing as Mattha would say. Smiles : Bruce On.

Response:

Wende, Welcome to the group! Glad that you have come out of the lurking mode and joined in sharing with us some details about yourself. I lurked for a long time before I posted anything and I still stay pretty silent. I am 51, married to a wonderful and very supportive man, have one adult male son, a Chocolate Lab, and a Queensland heeler, I live in a farming valley in central CA and have been diagnoised with Lupus and Fibro for about 2+ yrs though it went undiagnoised for years and years. Feel free to post and ask anything and someone will have an answer or find one….and continue reading share with us any of your experiences and advice. Hugs, Sherry

Response:

Hi Wende, I am glad that you joined us. I will tell you something about myself too. I live in a valley in rural Saskatchewan. My children are grown. I have two Golden Retrievers, both home bred Champions. I lost one to cancer last fall. We have deer, coyotes, rabbits, squirrels and countless birds. It is cold here today(-18F with strong winds). That is the one thing I will never get used to. I have autoimmune thyroid disease, Raynauds, skin problems, blood disorders, heart and lung difficulties as part of my lupus. I also have pernicious anemia and CNS involvement. I don’t know if I have forgotten anything or not. I lurked for a long time too. I am new at the computer and was afraid I would do something wrong. I also didn’t feel like I had anything to contribute. I now know that everyone here has something to offer. It could be a personal experience, a smile, or a word of encouragement. There are some that have amazing knowledge. That would not be me. You already know that we talk about everything. Once again, welcome. I will look forward to talking to you more. BJ-Canada "nt" <n…@cox.net

wrote in message

news:%%qh8.591$k81.11331@news2.east.cox.net… – Hide quoted text — Show quoted text -

I have been lurking around, so guess I should introduce myself. My name is Wende, I have SLE,Raynauds,CREST,Sjogrens,MCTD, etc. I was diagnosed a

year

and a half ago. After losing 30 lbs. because I could not swallow a lot of things. Having more blood, motility, endoscopies, dilatations, etc. tests. the diagnosis was all of the above. Positive ANA, Sed rate off the scale, rheumatoid  high too, developed auto immune thyroid disease, take a number of drugs for all of the above. I am a house spouse, thank goodness! We

have

large dogs and grown children, birds, bunnies, possums,squirrels (other

than

myself)   It has been quite cold here in Oklahoma, for the last couple of weeks.

It

is the wind that will get you. It truly sweeps down the plane.  I am enjoying your postings. Some of them are very insightful, and enlightening. Thank you. Stay warm. Wende

Response:

I have been lurking around, so guess I should introduce myself. My name is Wende, I have SLE,Raynauds,CREST,Sjogrens,MCTD, etc. I was diagnosed a year and a half ago. After losing 30 lbs. because I could not swallow a lot of things. Having more blood, motility, endoscopies, dilatations, etc. tests. the diagnosis was all of the above. Positive ANA, Sed rate off the scale, rheumatoid  high too, developed auto immune thyroid disease, take a number of drugs for all of the above. I am a house spouse, thank goodness! We have large dogs and grown children, birds, bunnies, possums,squirrels (other than myself)   It has been quite cold here in Oklahoma, for the last couple of weeks. It is the wind that will get you. It truly sweeps down the plane.  I am enjoying your postings. Some of them are very insightful, and enlightening. Thank you. Stay warm. Wende

Response:

Bj, and Judith know. Give me your real e mail addy, and I will tell you. W "rothnie" <31019558…@rogers.com

wrote in message

news:YkzG8.63794$ah_.39652@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -

Sooo Wende , why for you lurking in trench coat???? Bruce On.  " still waiting for BJ`s hot air " rothnie

Response:

Wende it is      rothnie2…@hotmail.com   the other you see is isp roger cable and goes out but nothing comes back to me . Bruce On. " holding BJ to her words. — rothnie

Response:

"Wende" <n…@cox.net

wrote in message

news:LCyG8.58396$Md6.1297643@news1.east.cox.net…

Still lurking, just checking in. Hi everyone. Wende

Waves, sees hand has needle and thread – apologizes – waves once again<g

Response:

Still lurking, just checking in. Hi everyone. Wende

Response:

Hi Wende. BJ-waving at you from warm Sk. "Wende" <n…@cox.net

wrote in message

news:LCyG8.58396$Md6.1297643@news1.east.cox.net… – Hide quoted text — Show quoted text -

Still lurking, just checking in. Hi everyone. Wende

Response:

Sooo Wende , why for you lurking in trench coat???? Bruce On.  " still waiting for BJ`s hot air " rothnie

Response:

Hi Wende Sherry "Wende" <n…@cox.net

wrote in message

news:LCyG8.58396$Md6.1297643@news1.east.cox.net… – Hide quoted text — Show quoted text -

Still lurking, just checking in. Hi everyone. Wende

Response:

The warm air should be there tomorrow Bruce. It is +29C today, but is supposed to drop to +8-+12C for Wednesday. I think that means all of the Ontario politicians are sucking up the hot air again. BJ-warm today, cold tomorrow "rothnie" <31019558…@rogers.com

wrote in message

news:YkzG8.63794$ah_.39652@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -

Sooo Wende , why for you lurking in trench coat???? Bruce On.  " still waiting for BJ`s hot air " rothnie

Response:

me too!!! waving …… but not too wildly, I are tired today. BJ must  have sent us some of her SK weather….there is a frost warning out for tonight. Can you believe that?? in May???? barbtoo

Response:

Hi Barbara, Yes, don’t you just hate those prairie springs? I do see hints of buds appearing today. Ahh, spring in Saskatchewan. BJ-waiting for warmth "Barbara Petty" <bwpe…@att.net

wrote in message

news:YE_F8.25368$D41.835447@bgtnsc05-news.ops.worldnet.att.net… – Hide quoted text — Show quoted text -

me too!!! waving …… but not too wildly, I are tired today. BJ must  have sent us some of her SK weather….there is a frost warning out for tonight. Can you believe that?? in May???? barbtoo

Response:

On Fri, 17 May 2002 14:45:00 GMT, "Wende" <n…@cox.net

 wrote: Just checking in. wende

HI! <paws waving wildly

It’s raining here – all day – <more dancing kitty images

Response:

You are too funny! I love the paws waving wildly (smile) Keep on dancin Miss Kitty, love you sweetie. wende "KCat" <kcdoc…@ghg.net

wrote in message

news:u0oaeu4cvtva63fm5k52kqugu0r6qhmgpl@4ax.com… – Hide quoted text — Show quoted text -

On Fri, 17 May 2002 14:45:00 GMT, "Wende" <n…@cox.net  wrote: Just checking in. wende HI! <paws waving wildly It’s raining here – all day – <more dancing kitty images

Response:

Hi, also waving from the SE corner of Virginia. Little wave no energy for a big one! Bev "Wende" <n…@cox.net

wrote in message

news:ymfF8.1497$Md6.93392@news1.east.cox.net… – Hide quoted text — Show quoted text -

You are too funny! I love the paws waving wildly (smile) Keep on dancin

Miss > Kitty, love you sweetie. wende > "KCat" <kcdoc…@ghg.net

wrote in message

> news:u0oaeu4cvtva63fm5k52kqugu0r6qhmgpl@4ax.com… > > On Fri, 17 May 2002 14:45:00 GMT, "Wende" <n…@cox.net>  wrote: > > >Just checking in. wende > > HI! > > <paws waving wildly> > > It’s raining here – all day – > > <more dancing kitty images>

Response:

Just checking in. wende

Response:

I am off to get my third dose of Rabies Vaccine. Now I look like a pin cushion. Think if I drink too much water I will leak? These shots bruise! Well, I am limping off to the hospital, you all have a great day.Wende

Response:

On Mon, 15 Apr 2002 13:40:54 GMT, "Wende" <n…@cox.net

 wrote: I am off to get my third dose of Rabies Vaccine. Now I look like a pin cushion. Think if I drink too much water I will leak? These shots bruise! Well, I am limping off to the hospital, you all have a great day.Wende

won’t hug ya but you are in my thoughts. bet you’ll be glad when this crud is over.. kcat

Response:

Good luck Wende. "Wende" <n…@cox.net

wrote in message

news:GLAu8.32678$GG1.2289734@news2.east.cox.net… – Hide quoted text — Show quoted text -

I am off to get my third dose of Rabies Vaccine. Now I look like a pin cushion. Think if I drink too much water I will leak? These shots bruise! Well, I am limping off to the hospital, you all have a great day.Wende

Response:

Hey, come stand in my rose garden and I’ll give you lots of water to drink – maybe even a jolt of Miracle-Grow<g

.

"Cindy" <cmat…@mmcable.com

wrote in message

news:7EGu8.35604$Vv5.8742371@twister.rdc-kc.rr.com… – Hide quoted text — Show quoted text -> Good luck Wende. > "Wende" <n…@cox.net

wrote in message

> news:GLAu8.32678$GG1.2289734@news2.east.cox.net… > > I am off to get my third dose of Rabies Vaccine. Now I look like a pin

cushion. Think if I drink too much water I will leak? These shots

bruise!

Well, I am limping off to the hospital, you all have a great

day.Wende

Response:

In article <%D4Yc.583$Cj5.0@trnddc04

, Beverley

<beverly.brow…@verizon.net

wrote

[

You might want to check Kcat's FAQ. It's full of click this information. (Andy has it on his site too.)

http://www.northeastlupus.org.uk/katfaq/index.htm -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Email me I need to talk to you about some beaded jewelry!! Bev "Janet R" <ImDoublo…@hotmail.com

wrote in message

news:Ul7Yc.1206$kj3.491@newssvr15.news.prodigy.com… – Hide quoted text — Show quoted text -

Hi Veronica, I am now 37 and have had Lupus since I was 12.  I mostly have liver, heart and lung involvement, but only moderately.  I can say I have lived a

fairly

full life.  I take a nap everyday if needed.  The sun is my enemy.  I

cannot

even handle a car ride and have cover-ups, BullFrog, and window screens to block the sun.  I see more than my share of doctors and I make sure they

are

communicating with each other…that is a job in itself.  Lupus is work,

but

we all get by. I see a my Family Practioner (for common stuff and as a catch all for all

my

labs), a Rheumatologist once a month for lupus and Osteoarthritis, an Internist for gout and gout-related kidney issues, Urologist (for diabetes and gout) twice yearly, Nephrologist (for Lupus, Gout, and Diabetes) once

a

year, and Gastro doc (cant spell that long name!) for small bowel inflammation which is possibly Crohns as needed.  Then the obligatory

Ob/Gyn

once a year. I would definitely say…if you don’t like your Rheumy…get another one.

I

made that mistake when I first moved to Houston.  Got a doc that was the pits and I waited 6 months to switch to my current doc…BIG MISTAKE…I should have left pronto.  I suffered for 6 months and my new doc had me feeling better by the end of that week. The meds can get overwhelming, and that part bothers me the most.  I take

8

Rx a day.  It bothers me and I’m not sure why, but I take them so I can

get

out of bed and live my life. So what’s good about Lupus?  The treatment is getting better by the day! You have more options in treatment and pharmaceuticals.  There are groups like this one and others on the web…and there are even magazines for

Lupus

patients that are wonderful. Learn your limits.  Do not be afraid to say ‘NO" to a request for your

time.

I work part time, have an active hobby (beaded jewelry), am mom to a very athletic 17 year old son, and have a wonderful husband who is always on

the

move.  My husband is great about adjusting our activities to my ability. Some days I cannot climb stairs…so I use the elevator, that’s what its there for!  I have a walker and will use it if the need arises.  I bring umbrellas everywhere for sun protection.  We just came back from

Maui…and

all that sun (even with LOTS of sun protection) brought on a flare…went straight from the plane to my Rheumy and got an injection of steroids

(with

other stuff mixed in) and I was back on my feet in a few days. You have to make some changes.  But you are not alone…and each day you will handle this diagnosis a little better. Janet R "Veronica"  wrote in message news:r0hqj0lncris4f94vsen23e55765poucvm@4ax.com… I found this news group and was wondering how many here have lupus? or are you family members? I just found out I may have lupus and am not handling it well.  I just don’t know what to do or what I should be doing or not doing.  I am just tired of all the constant aches and dryness no matter what the drs give me.. oh yea and drs.. how many do you have to go see? Veronica

Response:

Howdy back! Always, cloud "Katerina" <Veronica_85…@removethishotmail.com

wrote in message

news:jtgqj0dvl0c83shovre56ljsht18fulf6b@4ax.com… – Hide quoted text — Show quoted text -

This is a test to see if this message makes it, if so I will write more.

Response:

Ginny wrote:

Hi, my name is Ginny and I was recently dx with lupus and I’m not handling it very well. The fatigue drives me nuts because I am used to being active. I have been experiencing pains in my joints,as well as dry mouth. I have been taking Motrin for the pain but I think I am going to switch to Aleve. I don’t do well on prednisone and will do anything I can to stay off of it. I used Bullfrog sunscreen because it protects both uva and uvb rays. Actually, my boss recommended it (he has skin cancer.) I feel worse physically when there is a rise in the humidity. Hope to get to know this group a little better. Ginny

Hello Ginny and welcome to the newsgroup, Talk to us anytime. Hope your fatigue and joint pain is somewhat better. keep in touch, J

Response:

I know what you mean about being physical active and all of a sudden that is gone. I absolutely hate it.  The weather-rainy, really hot or really cold bothers me.  I does get better.  It just takes time.  I have good days and bad days, but the good are starting to out number the bad. "J" <lea…@example.net

wrote in message

news:4159EC71.78850ADF@execulink.com… – Hide quoted text — Show quoted text -

Ginny wrote: Hi, my name is Ginny and I was recently dx with lupus and I’m not handling it very well. The fatigue drives me nuts because I am used to being active. I have been experiencing pains in my joints,as well as dry mouth. I have been taking Motrin for the pain but I think I am going to switch to Aleve. I don’t do well on prednisone and will do anything I can to stay off of it. I used Bullfrog sunscreen because it protects both uva and uvb rays. Actually, my boss recommended it (he has skin cancer.) I feel worse physically when there is a rise in the humidity. Hope to get to know this group a little better. Ginny Hello Ginny and welcome to the newsgroup, Talk to us anytime. Hope your fatigue and joint pain is somewhat better. keep in touch, J

Response:

I was recently diagnosed with lupus but I think I’ve had it for a while. I have the dry eyes, dry mouth ( at times ), joint pain and a nasty rash on my upper body with a little on my face. The rash is fading, thank heavens. I found the fatigue the hardest to deal with……I am currently on Prednisone and Plaquenil. I am so happy to have found this group. ,,,,Lilac

Response:

Hi Lilac, I am happy you found us too.You may want to post your intro seperately, so it doesn’t get lost in a thread. Talk to us anytime. BJ-Sk. Canada <lilacl…@webtv.net

wrote in message

news:28997-415D72AD-316@storefull-3333.bay.webtv.net… – Hide quoted text — Show quoted text -

I was recently diagnosed with lupus but I think I’ve had it for a while. I have the dry eyes, dry mouth ( at times ), joint pain and a nasty rash on my upper body with a little on my face. The rash is fading, thank heavens. I found the fatigue the hardest to deal with……I am currently on Prednisone and Plaquenil. I am so happy to have found this group. ,,,,Lilac

Response:

Hi Ginny, This is such a good place to find support for what you are going through.  I think many of us have had *years* where we felt we did not handle it well. Many people on this group have the fatigue/joint pain plus other things. Everyone’s case is different, and yet strangely similar. You should see a rheumatologist and have a bunch of tests (if you haven’t already), including test on the thyroid gland–TSH, free T4, antithyroglobulin, and antithyroid peroxidase.  Any thyroid problem will wipe you out with fatigue.  As you might suspect, that is one of my big thingys with lupus.  :-) Dryness can be due to medication, it can also be a part of thyroid problems, or it can be a symptom of Sjogren’s syndrome.  it is good to be tested for that. The sun.  Use whatever works for you.  I just heard that sunscreens are not supposed to be used to prolong your time in the sun, just to help you deal with the time you have to be in it.  :-( There are tons of things that you can still do to keep yourself from going crazy.  It depends on which parts of you hurt the most at the time! Anyway, welcome to our group.  Keep checking back–you will get *lots* of responses and support. Boo [Boo Radley is not a Medical Physician, and while she may have some good advice, she asks you to please consult a doctor regarding any problems you may have] "Ginny" <ima_survi…@comcast.net

wrote in message

news:epmdnTPFPJYdQq3cRVn-vQ@comcast.com… – Hide quoted text — Show quoted text -

Hi, my name is Ginny and I was recently dx with lupus and I’m not handling it very well. The fatigue drives me nuts because I am used to being active. I have been experiencing pains in my joints,as well as dry mouth. I have been taking Motrin for the pain but I think I am going to switch to Aleve. I don’t do well on prednisone and will do anything I can to stay off of it. I used Bullfrog sunscreen because it protects both uva and uvb rays. Actually, my boss recommended it (he has skin cancer.) I feel worse physically when there is a rise in the humidity. Hope to get to know this group a little better. Ginny

Response:

Hi Ginny, Welcome. I hope to get to know you too. I don’t think very many of us handled it all that well when we were first daignosed. It will get easier with time. For me diagnosis was a bit of a relief. I was so sick that I felt that I finally knew why. It has been very quiet around here lately and it is always more so on weekend. Others will jump in to say hello soon. BJ-Sk. Canada "Ginny" <ima_survi…@comcast.net

wrote in message

news:epmdnTPFPJYdQq3cRVn-vQ@comcast.com… – Hide quoted text — Show quoted text -

Hi, my name is Ginny and I was recently dx with lupus and I’m not handling it very well. The fatigue drives me nuts because I am used to being active. I have been experiencing pains in my joints,as well as dry mouth. I have been taking Motrin for the pain but I think I am going to switch to Aleve. I don’t do well on prednisone and will do anything I can to stay off of it. I used Bullfrog sunscreen because it protects both uva and uvb rays. Actually, my boss recommended it (he has skin cancer.) I feel worse physically when there is a rise in the humidity. Hope to get to know this group a little better. Ginny

Response:

Hi Veronica, I am now 37 and have had Lupus since I was 12.  I mostly have liver, heart and lung involvement, but only moderately.  I can say I have lived a fairly full life.  I take a nap everyday if needed.  The sun is my enemy.  I cannot even handle a car ride and have cover-ups, BullFrog, and window screens to block the sun.  I see more than my share of doctors and I make sure they are communicating with each other…that is a job in itself.  Lupus is work, but we all get by. I see a my Family Practioner (for common stuff and as a catch all for all my labs), a Rheumatologist once a month for lupus and Osteoarthritis, an Internist for gout and gout-related kidney issues, Urologist (for diabetes and gout) twice yearly, Nephrologist (for Lupus, Gout, and Diabetes) once a year, and Gastro doc (cant spell that long name!) for small bowel inflammation which is possibly Crohns as needed.  Then the obligatory Ob/Gyn once a year. I would definitely say…if you don’t like your Rheumy…get another one.  I made that mistake when I first moved to Houston.  Got a doc that was the pits and I waited 6 months to switch to my current doc…BIG MISTAKE…I should have left pronto.  I suffered for 6 months and my new doc had me feeling better by the end of that week. The meds can get overwhelming, and that part bothers me the most.  I take 8 Rx a day.  It bothers me and I’m not sure why, but I take them so I can get out of bed and live my life. So what’s good about Lupus?  The treatment is getting better by the day! You have more options in treatment and pharmaceuticals.  There are groups like this one and others on the web…and there are even magazines for Lupus patients that are wonderful. Learn your limits.  Do not be afraid to say ‘NO" to a request for your time. I work part time, have an active hobby (beaded jewelry), am mom to a very athletic 17 year old son, and have a wonderful husband who is always on the move.  My husband is great about adjusting our activities to my ability. Some days I cannot climb stairs…so I use the elevator, that’s what its there for!  I have a walker and will use it if the need arises.  I bring umbrellas everywhere for sun protection.  We just came back from Maui…and all that sun (even with LOTS of sun protection) brought on a flare…went straight from the plane to my Rheumy and got an injection of steroids (with other stuff mixed in) and I was back on my feet in a few days. You have to make some changes.  But you are not alone…and each day you will handle this diagnosis a little better. Janet R – Hide quoted text — Show quoted text -

"Veronica"  wrote in message news:r0hqj0lncris4f94vsen23e55765poucvm@4ax.com… I found this news group and was wondering how many here have lupus? or are you family members? I just found out I may have lupus and am not handling it well.  I just don’t know what to do or what I should be doing or not doing.  I am just tired of all the constant aches and dryness no matter what the drs give me.. oh yea and drs.. how many do you have to go see? Veronica

Response:

Hi, my name is Ginny and I was recently dx with lupus and I’m not handling it very well. The fatigue drives me nuts because I am used to being active. I have been experiencing pains in my joints,as well as dry mouth. I have been taking Motrin for the pain but I think I am going to switch to Aleve. I don’t do well on prednisone and will do anything I can to stay off of it. I used Bullfrog sunscreen because it protects both uva and uvb rays. Actually, my boss recommended it (he has skin cancer.) I feel worse physically when there is a rise in the humidity. Hope to get to know this group a little better. Ginny

Response:

When you figure out what you are supposed to be doing will you let me know? I’ve had it for years and still have not figured it out. Most of us are sick and tired of being sick and tired!! All joking aside. Most folks cannot spend any time in the sun. I don’t seem to have a big problem with sun unless it is excessive. But what is a little sun for me is way too much for many others. And apparently spending time in the sun can do kidney damage etc. (I have no clue how or why that happens.) I’m probably outside more than anyone else on this group but I stay in the shade and avoid the sun as much as possible. And naturally I don’t sunbath or anything. I can eat aspirin like candy and so far it does not disturb my tummy. I also can use naprosyn Rx strength (another aspirin-like based NSAID but cannot not be used with aspirin) occasionally. But there is a whole arsenal of possible pain relievers that are and can be used. My doctor doesn’t want me taking the "big stuff" if I can still get away with the little stuff. Some days I need the big stuff but I guess until I get to the point where I can’t handle the constant problems with the little stuff he’s not going to give me anything stronger. I went to a rheumatologist on my GP’s recommendation and the rheumy told me I wasn’t sick enough. Hmmm, I wonder how sick is sick enough? So my GP is treating me himself which is probably better as I really like my GP. Stay away from all the immune boosters such as Echinacea, your system is already way too active!! Also my doctor pulled the legumes from my diet – I can’t remember why – something in them. Oh, I could have a few string beans but not a huge amount with every meal. And no more making big pots of split pea or lentil, etc. soup. That I miss as I loved my homemade bean soups. Your dryness is probably Sjogrens. It’s a common "add-on" to the lupus. If it gets too bad there are eye drops  for the eyes or they plug the tear ducts. For the mouth they have sprays. Skin and hair is mostly OTC stuff. You might want to check Kcat’s FAQ. It’s full of information. (Andy has it on his site too.)  Just remember everybody is a little different. No two of us are alike. Which is why it is often hard to diagnose and probably why the treatments vary so much. It is often helpful to keep a journal of how and what and then take that to your doctor. Mark the days with a pain scale of 0 (nothing) to 10 (unbearable pain). When the doctor sees in black and while what you are going through on a daily basis the doctor can better understand and treat the problems. But most important is for you to learn your limitations. Don’t feel guilty about taking naps. And as my doctor told me my best defense against this blasted disease is to keep myself as healthy as possible by eating right and getting enough sleep along with some moderate exercise. Bev "Veronica" <Veronica_85…@removethishotmail.com

wrote in message

news:r0hqj0lncris4f94vsen23e55765poucvm@4ax.com… – Hide quoted text — Show quoted text -

I found this news group and was wondering how many here have lupus? or are you family members? I just found out I may have lupus and am not handling it well.  I just don’t know what to do or what I should be doing or not doing.  I am just tired of all the constant aches and dryness no matter what the drs give me.. oh yea and drs.. how many do you have to go see? Veronica

Response:

wards wrote:

Hi BJ  It was a nice Christmas… I went to both my neurologist yesterday and she wants a EEG for the  time I kinda blanked out and lost a few mins. just to see if any seizure activity. Also because my migraines are not letting up and mostly on left side she is talking bout a tempral biopsy?? I am trying to find info bout that one sounds scary John is not to thrilled bout it putting needle in left temple from what she said……. ouch I also have had high glucose numbers so have to see endocrinologist. on it goes.

Hi Cindy, Ouch..I’m not thrilled about that one either. Any possibility that the "blank outs" are being caused by high glucose? Any chance that the migraines are being caused by an eye condition, side effect of medications or food allergies? Anyhow..sounds like she’s talking about stereotaxic or needle biopsy through a burr hole? explained here. http://www.wvneuro.com/brain%20biopsy.htm also BIOPSY A biopsy is a surgical procedure used to remove a small amount of tissue. The neurosurgeon then submits samples of the tissue to a neuropathologist for analysis. An accurate diagnosis is then possible. For those areas not easily reached via an open biopsy, a surgeon can, through a small hole made in the skull, use stereotaxic instrumentation to obtain a "closed" biopsy. Stereotaxic instrumentation allows the surgeon to precisely position a biopsy probe in three-dimensional space to allow access almost anywhere in the brain. In most instances, therefore, it is possible to obtain tissue for diagnosis, if it is desired. When biopsy is not performed, diagnosis relies solely on scan test results and their interpretation. http://www.nlm.nih.gov/medlineplus/ency/article/001399.htm temporal lobe My friend was having "absences" thought to be mini-strokes (TIA’s) sure hope they get it figured out for you, without too much discomfort. HTH J

Response:

Thanks so much J  that is a great site. I had the episodes before my glucose went high.  so I am not sure I am mostly swelling from that. The were concerned before hand because of the high dose of Medrol I had so been watching it. I will see the endo guy in a couple weeks. And I am being careful with my diet.  I am hoping is all some side effects  we will see. I hate those EEG’s can’t believe another one  but have to make sure bout seizures I guess Anyway thanks alot you are always such a great help. I have had a few of the TIA’s too that can be scary wondering when maybe more serious. Hugs Cindy – Hide quoted text — Show quoted text -J Wootton wrote:

wards wrote: Hi BJ  It was a nice Christmas… I went to both my neurologist yesterday and she wants a EEG for the  time I kinda blanked out and lost a few mins. just to see if any seizure activity. Also because my migraines are not letting up and mostly on left side she is talking bout a tempral biopsy?? I am trying to find info bout that one sounds scary John is not to thrilled bout it putting needle in left temple from what she said……. ouch I also have had high glucose numbers so have to womens breitling watch replica see endocrinologist. on it goes. Hi Cindy, Ouch..I’m not thrilled about that one either. Any possibility that the "blank outs" are being caused by high glucose? Any chance that the migraines are being caused by an eye condition, side effect of medications or food allergies? Anyhow..sounds like she’s talking about stereotaxic or needle biopsy through a burr hole? explained here. http://www.wvneuro.com/brain%20biopsy.htm also BIOPSY A biopsy is a surgical procedure used to remove a small amount of tissue. The neurosurgeon then submits samples of the tissue to a neuropathologist for analysis. An accurate diagnosis is then possible. For those areas not easily reached via an open biopsy, a surgeon can, through a small hole made in the skull, use stereotaxic instrumentation to obtain a "closed" biopsy. Stereotaxic instrumentation allows the surgeon to precisely position a biopsy probe in three-dimensional space to allow access almost anywhere in the brain. In most instances, therefore, it is possible to obtain tissue for diagnosis, if it is desired. When biopsy is not performed, diagnosis relies solely on scan test results and their interpretation. http://www.nlm.nih.gov/medlineplus/ency/article/001399.htm temporal lobe My friend was having "absences" thought to be mini-strokes (TIA’s) sure hope they get it figured out for you, without too much discomfort. HTH J

Response:

Hi Cindy, Yes, I had a very nice family Christmas too. I didn’t have nearly as many people as you did. I had a huge turkey though, so we have lots of leftovers. I wonder if your neurologist is speaking about a biopsy of the temporal artery. I think that is done to check for vasculitis. Why don’t you try a separate post about that to the group. Maybe one of the others; J, Janers, KCat or someone equally clever would know the answer and could give you more information. You must be tired after the big dinner event. I get tired for no reason at all, so I would much rather have something to blame it on, wouldn’t you? Happy New Year with Hugs, BJ "wards" <jcwar…@earthlink.net

wrote in message

news:3C2D167E.1FE59FF9@earthlink.net… – Hide quoted text — Show quoted text -

Hi BJ  It was a nice Christmas… I went to both my neurologist yesterday

and

she wants a EEG for the  time I kinda blanked out and lost a few mins.

just to

see if any seizure activity. Also because my migraines are not letting up and mostly on left side she

is

talking bout a tempral biopsy?? I am trying to find info bout that one

sounds

scary John is not to thrilled bout it putting needle in left temple from

what

she said……. ouch I also have had high glucose numbers so have to see endocrinologist. on it goes. My neurologist told me she has an auto immune disease she was very candid

and

we had a great talk she has always been great I am sad she has to have

this but

is a whole new spin on treatment. To have a dr that knows to a degree how

you

feel is something. Well that is update on me. I have been resting took all I had  to do

Christmas

and Christmas Eve dinner. I hope your Holiday was nice too. Hugs Cindy BJ wrote: Hi Cindy, It sounds like you had a whole house full of joy. I am glad that you had your magical Christmas. How are you feeling? Are things going better for

you > > now? > > Hugs, > > BJ > > "wards" <jcwar…@earthlink.net

wrote in message

> > news:3C2CF699.67E6F0BA@earthlink.net… > > > Hey Janers I am glad you had a good Holiday. I ended up with John’s whole

family my son and his girlfriend for Christmas Eve dinner 10 in all in our

tiny

house but is was all good …..I think a magical Christmas this year. After all everyone has been thru and I mean everyone everywhere it was nice to feel some of the old Christmas Magic. Hope you feel better Hugs  Cindy Janers wrote: Just wanted to say HI, and tell you I had a very nice Christmas.

Family

came home and of all things, they got along LOL Just shows that things can be good too. LOL Now Mr Art is knocking at my door, well rt leg, knee and ankle.  So

I

told him to go away but darn him anyway, he is not budging.  Wouldn’t you

know

it, I am off vioxx too.  But hey that is better than what is MAY have done to

the

tummy. Hope you all had a nice Christmas and everything is good for you. hugs janers

Response:

Hi Cindy, It sounds like you had a whole house full of joy. I am glad that you had your magical Christmas. How are you feeling? Are things going better for you now? Hugs, BJ "wards" <jcwar…@earthlink.net

wrote in message

news:3C2CF699.67E6F0BA@earthlink.net… – Hide quoted text — Show quoted text -

Hey Janers I am glad you had a good Holiday. I ended up with John’s whole

family

my son and his girlfriend for Christmas Eve dinner 10 in all in our tiny

house but

is was all good …..I think a magical Christmas this year. After all everyone has been thru and I mean everyone everywhere it was

nice to

feel some of the old Christmas Magic. Hope you feel better Hugs  Cindy Janers wrote: Just wanted to say HI, and tell you I had a very nice Christmas.  Family

came

home and of all things, they got along LOL Just shows that things can be good too. LOL Now Mr Art is knocking at my door, well rt leg, knee and ankle.  So I

told him

to go away but darn him anyway, he is not budging.  Wouldn’t you know

it, I am

off vioxx too.  But hey that is better than what is MAY have done to the

tummy.

Hope you all had a nice Christmas and everything is good for you. hugs janers

Response:

Hi BJ  It was a nice Christmas… I went to both my neurologist yesterday and she wants a EEG for the  time I kinda blanked out and lost a few mins. just to see if any seizure activity. Also because my migraines are not letting up and mostly on left side she is talking bout a tempral biopsy?? I am trying to find info bout that one sounds scary John is not to thrilled bout it putting needle in left temple from what she said……. ouch I also have had high glucose numbers so have to see endocrinologist. on it goes. My neurologist told me she has an auto immune disease she was very candid and we had a great talk she has always been great I am sad she has to have this but is a whole new spin on treatment. To have a dr that knows to a degree how you feel is something. Well that is update on me. I have been resting took all I had  to do Christmas and Christmas Eve dinner. I hope your Holiday was nice too. Hugs Cindy – Hide quoted text — Show quoted text -BJ wrote:

Hi Cindy, It sounds like you had a whole house full of joy. I am glad that you had your magical Christmas. How are you feeling? Are things going better for you now? Hugs, BJ "wards" <jcwar…@earthlink.net wrote in message news:3C2CF699.67E6F0BA@earthlink.net… Hey Janers I am glad you had a good Holiday. I ended up with John’s whole family my son and his girlfriend for Christmas Eve dinner 10 in all in our tiny house but is was all good …..I think a magical Christmas this year. After all everyone has been thru and I mean everyone everywhere it was nice to feel some of the old Christmas Magic. Hope you feel better Hugs  Cindy Janers wrote: Just wanted to say HI, and tell you I had a very nice Christmas.  Family came home and of all things, they got along LOL Just shows that things can be good too. LOL Now Mr Art is knocking at my door, well rt leg, knee and ankle.  So I told him to go away but darn him anyway, he is not budging.  Wouldn’t you know it, I am off vioxx too.  But hey that is better than what is MAY have done to the tummy. Hope you all had a nice Christmas and everything is good for you. hugs janers

Response:

Just wanted to say HI, and tell you I had a very nice Christmas.  Family came home and of all things, they got along LOL Just shows that things can be good too. LOL Now Mr Art is knocking at my door, well rt leg, knee and ankle.  So I told him to go away but darn him anyway, he is not budging.  Wouldn’t you know it, I am off vioxx too.  But hey that is better than what is MAY have done to the tummy. Hope you all had a nice Christmas and everything is good for you. hugs janers

Response:

Hey Janers I am glad you had a good Holiday. I ended up with John’s whole family my son and his girlfriend for Christmas Eve dinner 10 in all in our tiny house but is was all good …..I think a magical Christmas this year. After all everyone has been thru and I mean everyone everywhere it was nice to feel some of the old Christmas Magic. Hope you feel better Hugs  Cindy – Hide quoted text — Show quoted text -Janers wrote:

Just wanted to say HI, and tell you I had a very nice Christmas.  Family came home and of all things, they got along LOL Just shows that things can be good too. LOL Now Mr Art is knocking at my door, well rt leg, knee and ankle.  So I told him to go away but darn him anyway, he is not budging.  Wouldn’t you know it, I am off vioxx too.  But hey that is better than what is MAY have done to the tummy. Hope you all had a nice Christmas and everything is good for you. hugs janers

Response:

Hi Shelagh, Welcome. I too just watched for quite a while before I started posting. The people here are great. They are very helpful and supportive. I like a good laugh too. I can almost always see humour even in the worst situations. As I say; almost always. I’ll look forward to more posts from you. BJ "Shelagh Tiderington" <tidering…@telus.net

wrote in message

news:8lc_6.84224$Jg4.8989676@news1.telusplanet.net… – Hide quoted text — Show quoted text -> _____________________________________________ > Hi Sandra, [whoever you are and hello to all of you regulars; as you > can tell I have been watching over a period of time and am a bit > hesitant to share too much so have to see how it all goes along]:. > I too am new here and have fully enjoying reading all your > interactions with each other…I have tried to help a few of you > personally replying to the sender and this is my first group reply…I > hope to be here for a while -after over 35 years of severe lupus, 15 > of them undiagnosed from 12 onward, and a fair spell of good health > till now, the past year. > Anyway, hello to all and wishing you all a healthy and happy summer > and reminding you all that having the recognition that laughter can be > our best medicine (Norman Cousins)as can Knowledge be our best and at > times  only ally and/or advocate with our illness, lupus, and all the > professionals we have to deal with due to it, sometimes it is all on > our shoulders so be ready for all the aches, pains and stressors. > Fun?! [NO] > But, Happy Healthy Hols to all and I will be on board for as long as I > can, please feel free to contact me personally anyone?! I run an > online support group and have extended from land to networks over 15 > years with now 16 members online that I am responsible for, and I > really enjoy it. > If any one wants info just ask…I am hesitant to share for those that > have had too much sharing coming out their ears! From Shelagh at the > mybc.com community of health support groups. > ______________________________________________ > "zill" <toz…@webtv.net

wrote in message

> news:13236-3B32B81A-25@storefull-148.iap.bryant.webtv.net… > Hi Sandra Q–As an "unbiased" lurker-type, welcome to the friendliest, > most caring, smartest group around.  It is so great to be with others > who have  "been there."  Maybe I can join Lawrence in a "wave!" > Haven’t > heard anything of the other Sandra–seems like a long time.  Hope she > and family all o.k.  Gentle hugs to all.  Annie

Response:

I just wanted to welcome you to our group.  I’m very glad to hear that you’ve been running a support group successfully for so long.  Keeping a group going for 15 years is a big accomplishment.   BTW, I’ve read the Normal Cousins book to which you referred.  I very much enjoyed it.  I wouldn’t rely solely on laughter to cure cancer, but I think a good dose of humor would probably be very good for most conditions nevertheless.   Take care, Sandra

Response:

On Wed, 27 Jun 2001 03:23:48 GMT, "Shelagh Tiderington" <tidering…@telus.net

 wrote: _____________________________________________ Hi Sandra, [whoever you are and hello to all of you regulars; as you can tell I have been watching over a period of important source time and am a bit hesitant to share too much so have to see how it all goes along]:.

well, take your time.  we understand.

I too am new here and have fully enjoying reading all your interactions with each other…I have tried to help a few of you personally replying to the sender and this is my first group reply…I hope to be here for a while -after over 35 years of severe lupus, 15 of them undiagnosed from 12 onward, and a fair spell of good health till now, the past year.

Though I’m sorry you’re not doing as well as you were, I am glad to see "numbers" like the above in a sense.  So many folks come in "new" and are being told by those who don’t know better that their lifespans are much shortened, etc.  

If any one wants info just ask…I am hesitant to share for those that have had too much sharing coming out their ears! From Shelagh at the mybc.com community of health support groups.

well, I don’t think there’s too much sharing here – but I’m not the one to ask as I am probably the most "talkative" person here.  Too much so. anyway – welcome, feel free to jump in anytime.  I know the group can use your experience as many of us have only been dx’d for a short time (relatively speaking). Take care, *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Welcome Shelagh "Shelagh Tiderington" <tidering…@telus.net

wrote in message

news:8lc_6.84224$Jg4.8989676@news1.telusplanet.net… – Hide quoted text — Show quoted text -> _____________________________________________ > Hi Sandra, [whoever you are and hello to all of you regulars; as you > can tell I have been watching over a period of time and am a bit > hesitant to share too much so have to see how it all goes along]:. > I too am new here and have fully enjoying reading all your > interactions with each other…I have tried to help a few of you > personally replying to the sender and this is my first group reply…I > hope to be here for a while -after over 35 years of severe lupus, 15 > of them undiagnosed from 12 onward, and a fair spell of good health > till now, the past year. > Anyway, hello to all and wishing you all a healthy and happy summer > and reminding you all that having the recognition that laughter can be > our best medicine (Norman Cousins)as can Knowledge be our best and at > times  only ally and/or advocate with our illness, lupus, and all the > professionals we have to deal with due to it, sometimes it is all on > our shoulders so be ready for all the aches, pains and stressors. > Fun?! [NO] > But, Happy Healthy Hols to all and I will be on board for as long as I > can, please feel free to contact me personally anyone?! I run an > online support group and have extended from land to networks over 15 > years with now 16 members online that I am responsible for, and I > really enjoy it. > If any one wants info just ask…I am hesitant to share for those that > have had too much sharing coming out their ears! From Shelagh at the > mybc.com community of health support groups. > ______________________________________________ > "zill" <toz…@webtv.net

wrote in message

> news:13236-3B32B81A-25@storefull-148.iap.bryant.webtv.net… > Hi Sandra Q–As an "unbiased" lurker-type, welcome to the friendliest, > most caring, smartest group around.  It is so great to be with others > who have  "been there."  Maybe I can join Lawrence in a "wave!" > Haven’t > heard anything of the other Sandra–seems like a long time.  Hope she > and family all o.k.  Gentle hugs to all.  Annie

Response:

Welcome, Sandra, I hope you can get as much support as you need here, everyone tries very hard to be helpful and caring.  Ginger

Response:

On Mon, 18 Jun 2001 20:12:09 -0400 (EDT), sandra…@webtv.net (Sandra Q.)  wrote:

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

welcome… I see you’re competing with me for ther Personal Pharmacy of the Year Award. We have another Sandra – who is strangely silent right now – vacation I hope.  so the Q will be quite helpful. Take care – you’ll come to know that I am one of the most long-winded people on the entire Usenet. Kcat – keeping it brief this time… *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

"Virginia Austin" <GingerAus…@webtv.net

wrote in message

news:11366-3B2F5634-25@storefull-164.iap.bryant.webtv.net…

Welcome, Sandra, I hope you can get as much support as you need here, everyone tries very hard to be helpful and caring.  Ginger

Agreed! Judith in HOT SoCal

Response:

Sandra, Welcome to the group. I’m newly involved myself, supporting my wife who was just diagnosed with Lupus, but has suffered with chemical sensitivities (MCS) for years. I think you’ll find this a very supportive and helpful newsgroup–I definitely have. Michael – Hide quoted text — Show quoted text -"Sandra Q." wrote:

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

Response:

Hi Sandra–welcome–come and stay awhile-post readd and learn but abovve all feel that yoou arre at home when you comm here –you will be among friends and people w/the same battles. I myselv have had this SLE-Lupus and alot of your med. probs. for at least 15 pluzss years now, So I hope you enjoy your "news friend=ships————-Lar

Response:

Welcome to the group Sandra "Sandra Q." <sandra…@webtv.net

wrote in message

news:18889-3B2E98D9-93@storefull-625.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

Response:

Hi Sandra Q–As an "unbiased" lurker-type, welcome to the friendliest, most caring, smartest group around.  It is so great to be with others who have  "been there."  Maybe I can join Lawrence in a "wave!"  Haven’t heard anything of the other Sandra–seems like a long time.  Hope she and family all o.k.  Gentle hugs to all.  Annie

Response:

_____________________________________________ Hi Sandra, [whoever you are and hello to all of you regulars; as you can tell I have been watching over a period of time and am a bit hesitant to share too much so have to see how it all goes along]:. I too am new here and have fully enjoying reading all your interactions with each other…I have tried to help a few of you personally replying to the sender and this is my first group reply…I hope to be here for a while -after over 35 years of severe lupus, 15 of them undiagnosed from 12 onward, and a fair spell of good health till now, the past year. Anyway, hello to all and wishing you all a healthy and happy summer and reminding you all that having the recognition that laughter can be our best medicine (Norman Cousins)as can Knowledge be our best and at times  only ally and/or advocate with our illness, lupus, and all the professionals we have to deal with due to it, sometimes it is all on our shoulders so be ready for all the aches, pains and stressors. Fun?! [NO] But, Happy Healthy Hols to all and I will be on board for as long as I can, please feel free to contact me personally anyone?! I run an online support group and have extended from land to networks over 15 years with now 16 members online that I am responsible for, and I really enjoy it. If any one wants info just ask…I am hesitant to share for those that have had too much sharing coming out their ears! From Shelagh at the mybc.com community of health support groups. ______________________________________________ "zill" <toz…@webtv.net

wrote in message

news:13236-3B32B81A-25@storefull-148.iap.bryant.webtv.net… Hi Sandra Q–As an "unbiased" lurker-type, welcome to the friendliest, most caring, smartest group around.  It is so great to be with others who have  "been there."  Maybe I can join Lawrence in a "wave!" Haven’t heard anything of the other Sandra–seems like a long time.  Hope she and family all o.k.  Gentle hugs to all.  Annie

Response:

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

Response:

Hi Sandra, Welcome to the group. I hope you find some supportive friends here. BJ "Sandra Q." <sandra…@webtv.net

wrote in message

news:18889-3B2E98D9-93@storefull-625.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and replica watches sale south africa graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

Response:

Hi Sandra Q, welcome to the group. you will soon discover that everyone here is here to learn, listen, help, vent when needed, and be there for eachother!  I have never seen such a great group of people.  Once again Welcome and do share with us your experiences etc. Sherry

Response:

In article <18889-3B2E98D9…@storefull-625.iap.bryant.webtv.net

,

Sandra Q. <sandra…@webtv.net

wrote Hi. My name is Sandra and I was diagnosed with lupus 18 years ago.

Hi and welcome! — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/

For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/

For my other interests <URL: http://www.kitzbuhel.demon.co.uk/

Response:

Sandra, welcome to the newsgroup. You will find this is a good place to be. Martin "Sandra Q." <sandra…@webtv.net

wrote in message

news:18889-3B2E98D9-93@storefull-625.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -

Hi. My name is Sandra and I was diagnosed with lupus 18 years ago. I also have sjogrens, fibro, asthma and graves disease. My son found this site and told me about it. I have  2 sons. One is 25 and the other is 18. The meds I take are synthroid, paxil, xanax, celebrex, plaquenil, methotrexate, folic acid, singular, prilosec and my inhalers. Sandra

Response:

Welcome Sandra!  There are a lot of really nice people in this support group.  I have learned so much in the past 6 months. They are a group of compassionate and caring people.

Response:

I believe that you are correct on what was meant by the "second skin".  At least the product that you describe is what I was thinking of. Sherry

Response:

The hyperbaric oxygen chamber is supposed to open up the tiny blood vessels in the wound to allow the healing process to occur. Will let you know how I fare. Blanche

Response:

in article 20011227133945.11880.00001…@mb-dh.aol.com, BSinger1933 at bsinger1…@aol.com wrote on 12/27/01 12:39 PM:

The hyperbaric oxygen chamber is supposed to open up the tiny blood vessels in the wound to allow the healing process to occur. Will let you know how I fare.

Please do!

Response:

In article <20011225103327.07199.00002…@mb-dh.aol.com

,

BSinger1933 <bsinger1…@aol.com

wrote: Hello all from sunny, clear Xmas day in NY. The "second skin" or NuSkin is something that might not be right for me insofar as the wound or ulcer as I call it is rather deep and goes clear down to the bone.

I have to wonder if our first poster wasn’t thinking of TegaDerm.  It’s a poreless 3M product that seals a wound while letting it breathe.  It comes in strips and sheets, now on little window frame like things.  When it first came out, it was a bear to get off the backing without tangling it up. The real problem is if you also have an infection going in that area (which is possible, since it’s been open a long time).  You can’t use TegaDerm on infected spots. — Lee M.Thompson-Herbert        l…@retro.com            KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

in article 20011225103327.07199.00002…@mb-dh.aol.com, BSinger1933 at bsinger1…@aol.com wrote on 12/25/01 9:33 AM:

Hello all from sunny, clear Xmas day in NY. The "second skin" or NuSkin is something that might not be right for me insofar as the wound or ulcer as I call it is rather deep and goes clear down to the bone.

OOOOOCH!

However, this week I started a new treatment some of you might be interested in.   I go into a hyperbaric oxygen chamber which dives down 45 feet and wearing a special helmet get pressurized oxygen for one hour and 90 minutes five days a week.

What’s the chamber supposed to accomplish for you?

Response:

Hello all from sunny, clear Xmas day in NY. The "second skin" or NuSkin is something that might not be right for me insofar as the wound or ulcer as I call it is rather deep and goes clear down to the bone. However, this week I started a new treatment some of you might be interested in.   I go into a hyperbaric oxygen chamber which dives down 45 feet and wearing a special helmet get pressurized oxygen for one hour and 90 minutes five days a week.   I was lucky that there is a four person chamber near me.   There are only two in the metropolitan area and this one is about half hour from my home.  Will let you know if it does any good…..nothing else has. Happy Holiday. Blanche

Response:

Hi BJ How are you?  Bladder any better today? I wonder if your daughter was referring to compression stockings? http://www.bcbst.com/MPManual/Graduated_Elastic_Compression_Stocking_… I think they’re available in special medical supply places, but maybe Blanche has already tried this? Or perhaps she’d best check with her doctor first, because there are some contraindications. Regards and Best of the Season to you, J – Hide quoted text — Show quoted text -BJ wrote:

Hi Blanche, Seasons greetings to you too and welcome. I am always pleased when someone delurks and decides to join us. I don’t have a problem such as you described. My daughter is a nurse and has mentioned patients who had problems with similar things. She has talked about something called "second skin". It is some sort of invisible dressing that protects and speeds healing. I assume it would be available in the U.S.but it may be sold under a different name. Sorry I can’t be of more help. I did want to drop in to welcome you. Someone else may have some info for you. Regards, BJ– in cold but sunny Saskatchewan

Response:

Hi J, Merry Christmas to you. My bladder still hurts, but I will have to deal with that after the holidays. No, I think my daughter was talking about some kind of Internet page clear dressing. She will be home for Christmas, so I will ask her more about it then. How are you feeling? Holiday preparations make me so tired. Do you find that too? A Holiday Hug from BJ "J Wootton" <jwoot…@rogers.com

wrote in message

news:3C26330C.B32DEF97@rogers.com…

Hi BJ How are you?  Bladder any better today? I wonder if your daughter was referring to compression stockings?

http://www.bcbst.com/MPManual/Graduated_Elastic_Compression_Stocking_… .htm – Hide quoted text — Show quoted text -

I think they’re available in special medical supply places, but maybe

Blanche

has already tried this? Or perhaps she’d best check with her doctor first, because there are some contraindications. Regards and Best of the Season to you, J BJ wrote: Hi Blanche, Seasons greetings to you too and welcome. I am always pleased when

someone

delurks and decides to join us. I don’t have a problem such as you described. My daughter is a nurse and has mentioned patients who had problems with similar things. She has talked about something called

"second

skin". It is some sort of invisible dressing that protects and speeds healing. I assume it would be available in the U.S.but it may be sold

under

a different name. Sorry I can’t be of more help. I did want to drop in

to

welcome you. Someone else may have some info for you. Regards, BJ– in cold but sunny Saskatchewan

Response:

BJ, Merry Christmas Hugs from our house to yours. I am not sure what you call the clear dressing that you were referring to but yes you can get it in most drug stores here in the US.  Have bought it and used it on "wounds" and "road burns" that my son got on his motorcycle. Have been in bed the past few days with the migraine from hell.  My son was in an accident Friday night and totaled our pickup….which hasn’t helped the stress level.  Thank God he and his girlfriend weren’t hurt they were seat belted but the lady in the other vehicle was taken by ambulance from the scene.  Some prayers for her would be nice and appreciated. Sherry

Response:

in article y_oV7.126$iOo3.262…@tomcat.sk.sympatico.ca, BJ at B…@sk.nojunk.ca wrote on 12/23/01 12:02 PM:

Hi Blanche, Seasons greetings to you too and welcome. I am always pleased when someone delurks and decides to join us. I don’t have a problem such as you described. My daughter is a nurse and has mentioned patients who had problems with similar things. She has talked about something called "second skin". It is some sort of invisible dressing that protects and speeds healing. I assume it would be available in the U.S.but it may be sold under a different name.

The product I have is called New Skin, by Medtech. It comes in a little spray can. You splat the antiseptic spray on the wound, wince while it dries, then try not to peel the stuff off while the wound heals. (Can you tell I’m not real fond of the product?) I’ve never used it successfully where there was regular pressure against the wound, as when I get a blister where the back of my shoe rubs my heel.

Response:

Hi Sherry, Christmas hugs right back at you. I am speaking softly and keep lights dim out of respect for your migraine. Can you tell that I have had experience with those? Prayers being sent as requested. I’m glad your son is okay. BJ "Sherry" <sstof…@inreach.com

wrote in message

news:91sV7.636$SJ4.227283990@news.inreach.com… – Hide quoted text — Show quoted text -

BJ, Merry Christmas Hugs from our house to yours. I am not sure what you call the clear dressing that you were referring to but yes you can get it in most drug stores here in the US.  Have bought it and used it on "wounds" and "road burns" that my son got on his

motorcycle.

Have been in bed the past few days with the migraine from hell.  My son

was

in an accident Friday night and totaled our pickup….which hasn’t helped the stress level.  Thank God he and his girlfriend weren’t hurt they were seat belted but the lady in the other vehicle was taken by ambulance from the scene.  Some prayers for her would be nice and appreciated. Sherry

Response:

In article <91sV7.636$SJ4.227283…@news.inreach.com

, "Sherry"

<sstof…@inreach.com

wrote: BJ, Merry Christmas Hugs from our house to yours. I am not sure what you call the clear dressing that you were referring to but yes you can get it in most drug stores here in the US.  Have bought it and used it on "wounds" and "road burns" that my son got on his motorcycle. Have been in bed the past few days with the migraine from hell.  My son was in an accident Friday night and totaled our pickup….which hasn’t helped the stress level.  Thank God he and his girlfriend weren’t hurt they were seat belted but the lady in the other vehicle was taken by ambulance from the scene.  Some prayers for her would be nice and appreciated. Sherry

Sherry, I imagine the stress you are under isn’t healing the migraine. Prayers and love our coming your way for all three in the accident and also for you.  Christmas and the holidays always remind us that our children are still our children even in their thirties.  The only problem is that they have never learned to take our advice that we have given them so generously all these years.  Oddly  we hear our children giving that same advice to their children with no response from our grandchildren.  Getting older is fascinating because we see the same patterns developing and bewilderment that the excellent advice is not received as the nuggets of gold we gave them.  We have l6 family members gathered tonight for supper.  The ones that are late are late and the little ones want to open the Christmas presents early.  The house is a disaster and as we listen to them we sit back and know that they call this their home and every one that is here has traveled some distance to share their love with us. We are content. Again let me thank the group for all the loving support you continue to give so abundantly.  You are where I go when I need to know that someone else really understands that Lupus, Sjogrens, etc. is the pits .  The help and information is amazing   Happy  holidays to everyone   ruth

Response:

Ruth, Thank you for your kind words and your prayers. Yes, no matter how old they get they are still our "babies".  It is always great to have everyone home for the holidays. Enjoy your family and the joys of this season. Hugs, Sherry

Response:

BJ, Thanks for the whisper and the dim lights.  I am sure that most here know the dreadful headaches from he**. Enjoy all of your family that was able to come home for Christmas and stay warm! Thank you for the prayers and good wishes. Hugs, Sherry

Response:

Hi to all of you and best wishes for a very happy holiday season. I have been lurking for quite a long time.   I have had lupus for 24 years and have been quite lucky insofar as I have not had any really drastic flares and ones that couldn’t be handled with Prednisone no higher than 40 mg. The one thing I do get is a ulcer that opens up right above my right ankle bone.  Early on it would heal rather quickly.   As the years went by it took longer and longer but always came back a year or so later.  Whatever we tried it always came back.  I was wondering if anybody else suffers from this.   Again, hope everyone enjoys a really nice holiday season. Blanche in NY

Response:

Hi Blanche, Seasons greetings to you too and welcome. I am always pleased when someone delurks and decides to join us. I don’t have a problem such as you described. My daughter is a nurse and has mentioned patients who had problems with similar things. She has talked about something called "second skin". It is some sort of invisible dressing that protects and speeds healing. I assume it would be available in the U.S.but it may be sold under a different name. Sorry I can’t be of more help. I did want to drop in to welcome you. Someone else may have some info for you. Regards, BJ– in cold but sunny Saskatchewan "BSinger1933" <bsinger1…@aol.com

wrote in message

news:20011223121536.06229.00001010@mb-mq.aol.com… – Hide quoted text — Show quoted text -

Hi to all of you and best wishes for a very happy holiday season. I have been lurking for quite a long time.   I have had lupus for 24 years

and

have been quite lucky insofar as I have not had any really drastic flares

and

ones that couldn’t be handled with Prednisone no higher than 40 mg. The one thing I do get is a ulcer that opens up right above my right ankle bone.  Early on it would heal rather quickly.   As the years went by it

took

longer and longer but always came back a year or so later.  Whatever we

tried

it always came back.  I was wondering if anybody else suffers from this. Again, hope everyone enjoys a really nice holiday season. Blanche in NY

Response:

Persons on prednisone should probably be on fosamax and vitamin D as well as calcium supplements (1200 mg/day for adult).

Response:

Zibby, from: sst6842…@aol.com My name is sandy and I have tried Prednisone about 10 years ago for my sle(lupus) first it was 20mg. then i got down to 10mg. I was on it for about five years. Due to the long terms I Have had knee replacement and am on my way to having a ankle fussion as soon as i can get my nerve up to it. Right now I’m not on any meds. But it took alot for me to get where I am today.I have also tried Plaquinil . I don’t use my computer to much but if you want to we can stay in touch this is the first time I’ve been in this chat room. so write me back. and I’ll keep checking to see if you did.

Response:

If you were on prednisone you should have been on calcium, Vit. D, and fosamax to prevent bone loss. —

Response:

Zach, How old are you and what type doctor has you on the meds; PCP, rheumy,or what? Both drugs have some nasty side effects.  I have a 18 YO daughter who is 4′6" with osteoperosis and avascular neucrosis because of the Pred.  E-mail if you would like with more info on you.  Maybe I can be of some help.  Best wishes to you. Dan, the Lupus Dad

Response:

Hello everyone, My name is Zach and I have been living with Discoid Lupus for at least 8 years now. I have a couple of questions to ask . I have been on Prednisone and Plaquinil for the duration. 10mg Pred, 200mg Plaq. I also take Soma to try and minimize the muscle and joint pain. Then of course the requisite sleeping agent ( Restoril 30mg) to swiss mens watches replica sleep. My Dr. says that "IT" has not progressed into SLE, but I believe I have many symptoms relevant to SLE and not only Discoid. My ANA numbers come back only slightly positive. So here are the questions: 1 What are the long term effects of Prednisone, even at 10mg a day? 2 Long term effects of Plaquinil? I do have my eyes checked about once a year. ( I know I should have them checked every 6 months.) My vision has been degrading over the last 2 years. 3 What alternatives are there to the Pred?     I must admit that when I was diagnosed with this I kinda freaked. I joined a support group and learned that I was in the minority (Male). No problem. When I was able to get a handle on this thing  ( meds, sun,etc) I kinda dismissed the fact that I was sick. I am taking care of my wife who suffered a closed head injury 7 years ago and has been disabled since. I still go out in the sunshine and try to live a normal life. I would love to get off the Pred & Plaquinil but can’t get below about 7mg Pred without flaring. I have dropped the Plaq. down to 100mg day. I have noticed lesions and rash in areas that never get exposed to sunlight( pelvic). I have tried various ointments and a box full of different soap with no change. Any suggestions would be appreciated. I consider myself lucky in that I have only gained about 15lbs from the Pred. All of it right in the middle.         Thanks and looking forward to hearing from you.                                 Zach                                 Zi…@powernet.net

Response:

Hello again, is there any special questions I should be asking my rheumatologist?  I have to see him on Friday.  Keep posting everyone, although I may not answer right away I do read, it all depends on how exhausted I am after work.  I now have to take a nap on my lunch break, to make it through the day.  I think that is the hardest for me to deal with, that I am only 42 and used to running all day and part of the evening staying up til 10:30 or so and up at 5:30 or so and now, just all of a sudden NAPS are a must.  :(  Take care everyone and know this is a great group!!!

Response:

In article <r8vcj0df3bknql5u41gj0cmi3aj3dl9…@4ax.com

, Katerina

<katerina…@removethishotmail.com

wrote Hello again, is there any special questions I should be asking my rheumatologist?  I have to see him on Friday.

Don’t plan on asking too many at one visit. You may want to write them down beforehand, and also make a written note of his/her answers as he speaks. Take a notepad with you! — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

just checking in with you all. The schedule for mom is grueling. I seem to be doing ok. check with you later. W

Response:

Wende, Glad to hear that you are doing ok.  When we are being the caregivers, sometimes we are not able to listen to our bodies.  I hope that everything with your mom is going as well as it can.  I have been wondering about you. I will have a new e-mail address as our Cox transformation is near completion.  cmath…@cox.net As for me  I have good days and bad. This week has been pretty much bad. I am just glad that it is the weekend so that I can take enough drugs to get out of a little pain.  It really makes me mad. I have been doing alot of reading about this fibro thing.  I can’t make up my mind. Is it really a disease, or am I just making all this pain up in my head.  If I was going to make up stuff, it would surely be good stuff? Wouldn’t it?  Well here I go being all long winded and everything.  Hope that you are able to take care of yourself. Prayers for your mom, and Have a nice weekend. Cindy "Wende" <n…@cox.net

wrote in message

news:_QlO8.24226$Hn4.700606@news1.east.cox.net… – Hide quoted text — Show quoted text -

just checking in with you all. The schedule for mom is grueling. I seem to be doing ok. check with you later. W

Response:

Cindy, Let me tell you the Fibro thing is very painful, is not in your head and it can also be a label that a Doc will give someone if they don’t want to dx the Lupus I think. I had a Rheumy dx me with Fibro and told me that the pred (taking for Lupus) would not help with the pain of my Fibro.  Well if it won’t then the pain that he says is Fibro is something entirely different because when I was taking the pred I did have relief from that pain as well as some of my other pain. I don’t know if this is making sense.  Today is a day full of pain and I need to get some RX’s transferred to here. But I just wanted to jump in and say I beleive that your pain is real, not made up and like you if I was gonna invent something it sure wouldn’t hurt like hell all of the time! Hugs, Sherry

Response:

Hi Wende, Thanks for checking in – I was wondering how you were. Please be sure you take care of yourself while you care for your mom.  (BTDT – crashed) Hugs and smiles, Jackie "Wende" <n…@cox.net

wrote in message

news:_QlO8.24226$Hn4.700606@news1.east.cox.net… – Hide quoted text — Show quoted text -

just checking in with you all. The schedule for mom is grueling. I

seem to

be doing ok. check with you later. W

Response:

Me too. BTDT. I think I pretty much crashed too. Don’t forget to take care of yourself and spend time loving and enjoying the rest of your family too. Bev "Jackie" <lkolb…@earthlink.net

wrote in message

news:HuxO8.2821$TP4.198346@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Hi Wende, > Thanks for checking in – I was wondering how you were. > Please be sure you take care of yourself while you care for > your mom.  (BTDT – crashed) > Hugs and smiles, > Jackie > "Wende" <n…@cox.net

wrote in message

> news:_QlO8.24226$Hn4.700606@news1.east.cox.net… > > just checking in with you all. The schedule for mom is grueling. I > seem to > > be doing ok. check with you later. W

Response:

lauren wrote:

<snip

Is that one way to know if you have AI- if steroids are effective or not? Did anyone accompany you on your initial MD visits Sharon? Just curious.

<snip

Hi Lauren, Steroids are often used to determine if the pain is in fact from inflammation or not.  In my case, I had been dxed with FMS, which is muscular pains, and steroids often make those pains worse.  But the steroids worked for me, making me able to walk again so I didn’t have to drop out of school that semester.  This was due to the system-wide inflammation that ended up showing on my blood work (the tests are CRP and ESR blood tests, they were both elevated.) I usually went to my doc visits alone, and it was getting me nowhere. Finally my fiance went with me to my first visit to the internist at NYU that my eye doctor recommended me to.  Hubby helped me immensly, keeping my defensive nature of docs in check, and keeping the doc in check when he started getting snippy.  I don’t know if it ultimately made any difference at all, but it was the first time after eight long years that I had a doc take me seriously, and now I have a wonderful RD who is treating me.  I always went alone to my RD, so maybe my hubby’s presense didn’t matter that much to my treatment, but it sure was nice emotionally! Good luck with everything Lauren! -Sharon — "Don’t make me come down there…"                            -God

Response:

Hi Lauren, I used to be very passive too. I now take charge and get printouts of my monthly blood work. I don’t trust the doctors to monitor it properly themselves. I am not a pushy person, so it was hard at first. I had an incident that turned my way of thinking around. I then realized it was up to me to keep up with what is going on. It is my life at stake. Don’t let yourself be intimidated. BJ-Sk. Canada "lauren" <L-littlest…@webtv.net

wrote in message

news:3476-3F276423-85@storefull-2111.public.lawson.webtv.net… – Hide quoted text — Show quoted text -

Thank you for the ‘welcome’ BJ.  I saw a Rheumy for years but later mainly saw his Nurse. As my other symptoms developed at first she would go to tell him but I never got a response. I was way to passive for years and then had little insurance coverage and so not much to do with/for me. My MD was too busy to take time with me and I was too disorientated from the long wait for him to relay all that was going on (or even understand my own notes). After awhile the Nurse would just roll her eyes when I told her symptoms and so I stopped talking. I will start tracking things as you suggest- The fevers and other things could be CFS syndrome (instead/also?) A blood test can give a positive Lupus diagnosis? lauren ———————-  (BJ) Hi Lauren, I am sorry you are having such a bad time. I hope we can be of some help. Have you seen a rheumatologist? Who diagnosed your fibro? I think the first thing you should do, if you aren’t already, is keep a chart tracking the fevers and other symptoms. I don’t know much about fibro, but I don’t think one has fevers with that. A rheumy would do all the blood work to determine if you have lupus or not. All of the things you mentioned could be that, but it could also be something else. I am not really good at explaining all the tests that might be done. There are others here who would be of more help in that area. I do want to welcome you, and tell you that things have been quiet around here this summer. There will be other replies, but it may take some time. BJ-Sk. Canada

Response:

Hi Sharon, I saw a Nurse who thought I had diverticulitis- still have the symptoms but I try to control them. I have limited insurance and $$ so I have to pick and choose (hopefully somewhat wisely) what I do with it. Have a place to live and eat or get testing and meds?? Hmmm…tuff call. Trying to work out both. Thank you for sharing some of your story. I will print it out and show my next MD. When I was a baby I had many allergies and had to get B12 shots. I wonder….. Had strep throat a few times but didn’t get MPS (TOS, hairline spinal fracture,TMJ) pain until after a car hit me. Was told it was mostly in my head for years till the pain spread to all 4 quadrants. Then had FM diagnosis but shortly after the pain spread all the other symptoms started. I have been treated very badly (negligently) by MD’s so far. I don’t really understand why. I am tempted not to give a new MD my FM Dx and see what they come up with. Hey! I was brushing out handfuls of hair for awhile but that did stop. I am very weak now. Afraid of side effects of steroids but ….. Is that one way to know if you have AI- if steroids are effective or not? Did anyone accompany you on your initial MD visits Sharon? Just curious. —- I love NYU. When I used to visit NYC- I would always go hang around there. Of course if it was to go to see a MD – it would not have been as romantic : ) Thanks again, lauren ————————– (Sharon) Hi Lauren, My name is Sharon, and I was dxed with FMS at 16 because I couldn’t walk one day for no reason, and that lasted about four years. It took a year of therapy three times a week with a chiropractor, who gave me stim, massage, and stretched my legs, and then the spinal adjustment. After a year of this, I was able to walk again, and it has never been that bad again. But, that being said, other symptoms started up, horrid things they were, like 100 fevers every day, and horrid joint pain, swelled left hip, stomach troubles, so much that my GP almost hospitalized me because he thought I had diverticulitis, but it went away before the hospitalization took place. My symptoms are just like yours, and kept getting worse over time. Hair loss was the last straw for me. Something was wrong! I ended up at age 23 a mush on the couch, not being able to walk I was so weak, and no doctor was able to dx me. I was even UNdxed with the FMS by some idiot RD. Finally my eye doctor referred me to an internist here at NYU med center, and he confirmed that there most definitely was something more to the picture, and after 8 long years of suffering, I finally got referred to an RD who dxed me with an autoimmune disease. So far I am lucky in not having any specific autoantibodies show up, which means that my disease is not advanced enough to determine which AI disease I have, so it is Undifferentiated Connective Tissue Disease at the moment. As I age or the disease progesses (hopefully not!) it might become more clear as to which one I have. What tipped him off was my symptoms, just like yours, and my blood work came back with very low B12 levels, and my CRP and ESR blood tests came back high, showing non-specific systemic inflammation. Also, I had a permanent high white cell count for seemingly no reason. So now he is treating me, and validated that I am not crazy after all! He has me on an anti-malarial medicine, Atabrine (also called Quinacrine, same stuff) and he has me on Prednisone, which is the only thing that got me through last year at college! I would have taken a leave if it wasn’t for him. I was about to travel to Rochester, Minnesota to go to the Mayo clinic there, because it seemed that no one locally could or was willing to help me, and this Mayo clinic is known to be the best one, but I found this RD in time, right before I scheduled the trip! You might want to look into the Mayo clinic if you can’t find any doc to help you. Your symptoms are very real. Don’t ever let anyone tell you it’s all in your head or you’re just being weak, etc. Good luck to you! -Sharon — "Don’t make me come down there…"

Question:

Brad, Considering the number of people of Eastern European decent whom are prone to IBD, it is not surprising at all.  I’m just glad people are making progress and science has few boundaries in our time.  mgbio – Hide quoted text — Show quoted text – I wasn’t trying to make a poilitical statement as such, more surprised about the fact it is these 2 countries involved in this. Brad, You shouldn’t mix apples and oranges.  There is a lot of cooperation between the two countries in many areas, as for the "conflict" it takes 2 parties to desire peace; so far only one has shown.  The U.S. is just an over interested bystander as far as I’m concerned. mgbio I was assuming the US and Israel are working together on this manmade bacteria. My point was they seem to be productive with this research on manmade bacteria as a treatment for IBD versus being un-productive in coming to a solution to bring peace to the middle-east. But since my original post, I think there has been some progress in that Isreal is backing down from Arafat’s compound..haven’t fully gotten the news the past 24hrs. Cheers, Brad I still don’t understand your statement. mgbio Brad, At least who is being productive with what? <snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

I wasn’t trying to make a poilitical statement as such, more surprised about the fact it is these 2 countries involved in this.

– Hide quoted text — Show quoted text – Brad, You shouldn’t mix apples and oranges.  There is a lot of cooperation between the two countries in many areas, as for the "conflict" it takes 2 parties to desire peace; so far only one has shown.  The U.S. is just an over interested bystander as far as I’m concerned. mgbio I was assuming the US and Israel are working together on this manmade bacteria. My point was they seem to be productive with this research on manmade bacteria as a treatment for IBD versus being un-productive in coming to a solution to bring peace to the middle-east. But since my original post, I think there has been some progress in that Isreal is backing down from Arafat’s compound..haven’t fully gotten the news the past 24hrs. Cheers, Brad I still don’t understand your statement. mgbio Brad, At least who is being productive with what? <snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

Brad, At least who is being productive with what?

<snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

I still don’t understand your statement. mgbio – Hide quoted text — Show quoted text – Brad, At least who is being productive with what? <snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

I was assuming the US and Israel are working together on this manmade bacteria. My point was they seem to be productive with this research on manmade bacteria as a treatment for IBD versus being un-productive in coming to a solution to bring peace to the middle-east. But since my original post, I think there has been some progress in that Isreal is backing down from Arafat’s compound..haven’t fully gotten the news the past 24hrs. Cheers, Brad

– Hide quoted text — Show quoted text – I still don’t understand your statement. mgbio Brad, At least who is being productive with what? <snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

Brad, You shouldn’t mix apples and oranges.  There is a lot of cooperation between the two countries in many areas, as for the "conflict" it takes 2 parties to desire peace; so far only one has shown.  The U.S. is just an over interested bystander as far as I’m concerned. mgbio – Hide quoted text — Show quoted text – I was assuming the US and Israel are working together on this manmade bacteria. My point was they seem to be productive with this research on manmade bacteria as a treatment for IBD versus being un-productive in coming to a solution to bring peace to the middle-east. But since my original post, I think there has been some progress in that Isreal is backing down from Arafat’s compound..haven’t fully gotten the news the past 24hrs. Cheers, Brad I still don’t understand your statement. mgbio Brad, At least who is being productive with what? <snipped from Mike’s post  Researchers in the United States and Israel have found that mice  inoculated with fragments of manmade bacterial DNA gain temporary  protection from inflammatory bowel disease, a debilitating form of  intestinal distress.

Response:

Brad, At least who is being productive with what? mgbio – Hide quoted text — Show quoted text – the US and Isreal? Was this a combined effort? If it was, at least they are being productive with something. Cheers, Brad CD Class of 87

Response:

the US and Isreal? Was this a combined effort? If it was, at least they are being productive with something. Cheers, Brad CD Class of 87

Response:

Thanks Mike. — Take Care, Sherry Manmade DNA May Ease Bowel Disease Mon Apr 29, 7:11 PM ET By Adam Marcus HealthScoutNews Reporter MONDAY, April 29 (HealthScoutNews) — A small chunk of synthetic genetic material may hold promise as a treatment for serious bowel inflammation. Researchers in the United States and Israel have found that mice inoculated with fragments of manmade bacterial DNA gain temporary protection from inflammatory bowel disease, a debilitating form of intestinal distress. Germ DNA has previously been shown to promote protection from allergies. But the latest work, reported in the May issue of the journal Gastroenterology, is the first to suggest it might help with gastric irritation, too. Inflammatory bowel disease is an umbrella term for ulcerative colitis and a related condition, Crohn’s disease, which together affect roughly 1 million Americans. A much larger number of people, perhaps 30 million in this country alone, suffer from irritable bowel syndrome (IBS) — a generally milder intestinal ailment. Unlike colitis, IBS is not marked by inflammation. However, it can still make life miserable for people by causing painful diarrhea, bloating, constipation and other unpleasant symptoms. The synthetic DNA is called an immunostimulatory oligonucleotide (ISS-ODN). Scientists have found it generates a "danger-like signal" to the immune system, warning of a potential microbial invasion. In response, cells and chemicals that fight infection spring to action. ISS-ODN also appears to shield cells in the intestinal lining in another way, deterring them from committing suicide. In the new work, a team led by Dr. Eyal Raz of the University of California, San Diego, gave both injections and oral forms of ISS-ODN to groups of mice with bowel ailments that mimiced various types of colitis. The synthetic DNA reduced inflammation and prevented gut cell death, Raz’s group found. However, when the treatment was stopped the symptoms returned, suggesting the therapy doesn’t offer long-term protection unless given continuously. Raz said there’s no obvious reason the approach wouldn’t work in people with inflamed bowels, and his Israeli colleagues are now preparing a human trial with the therapy. Preliminary evidence from tissue samples of colitis patients has found the DNA fragments do seem to soothe intestine cells. Current treatments include steroids and antibody therapy, which can be expensive and cause potentially severe side effects. As for ISS-ODN, "there isn’t too much in terms of side effects that would make you think twice about using it. It’s relatively very safe," Raz said. In other developments affecting the treatment of IBS, a U.S. Food and Drug Administration (news – web sites) (FDA) panel last week took the highly unusual step of recommending the agency lift its ban on a previously approved drug for women with IBS. The drug, Lotronex, was pulled in November 2000 after being linked to serious intestinal side effects and several deaths. Nancy Norton, president of the International Foundation for Functional Gastrointestinal Disorders, testified at the FDA panel hearing in support of bringing back Lotronex. "We are concerned that patients have access to a medication that clearly provides benefit to them," Norton said. The drug "was truly life-altering. It gave them their life back, and then it was taken away from them." Should the FDA follow its panel’s advice — it typically does — Norton said the agency and GlaxoSmithKline, which makes the drug, would need to have an adequate safety plan to protect people who use Lotronex. The prospect of Lotronex’s return dismayed consumer protection advocates who had lobbied the FDA to take the drug off the market. Dr. Sidney Wolfe, director of Public Citizen’s Health Research Group, told the panelists "the reintroduction of Lotronex into the market, even with the restrictions proposed by Glaxo, would be a serious public health mistake, likely, if not certain, to result in the need to ban the drug again." What To Do: To learn more about inflammatory bowel disease, visit the Crohn’s & Colitis Foundation of America. For more on irritable bowel syndrome, try the National Institutes of Health. Please Visit www.ibdcure.com and sign the petition for an IBD postage stamp. All opinions expressed are mine unless otherwise noted. "those that can be offended, will be" … Pastor Don

Response:

Manmade DNA May Ease Bowel Disease Mon Apr 29, 7:11 PM ET By Adam Marcus HealthScoutNews Reporter MONDAY, April 29 (HealthScoutNews) — A small chunk of synthetic genetic material may hold promise as a treatment for serious bowel inflammation. Researchers in the United States and Israel have found that mice inoculated with fragments of manmade bacterial DNA gain temporary protection from inflammatory bowel disease, a debilitating form of intestinal distress. Germ DNA has previously been shown to promote protection from allergies. But the latest work, reported in the May issue of the journal Gastroenterology, is the first to suggest it might help with gastric irritation, too. Inflammatory bowel disease is an umbrella term for ulcerative colitis and a related condition, Crohn’s disease, which together affect roughly 1 million Americans. A much larger number of people, perhaps 30 million in this country alone, suffer from irritable bowel syndrome (IBS) — a generally milder intestinal ailment. Unlike colitis, IBS is not marked by inflammation. However, it can still make life miserable for people by causing painful diarrhea, bloating, constipation and other unpleasant symptoms. The synthetic DNA is called an immunostimulatory oligonucleotide (ISS-ODN). Scientists have found it generates a "danger-like signal" to the immune system, warning of a potential microbial invasion. In response, cells and chemicals that fight infection spring to action. ISS-ODN also appears to shield cells in the intestinal lining in another way, deterring them from committing suicide. In the new work, a team led by Dr. Eyal Raz of the University of California, San Diego, gave both injections and oral forms of ISS-ODN to groups of mice with bowel ailments that mimiced various types of colitis. The synthetic DNA reduced inflammation and prevented gut cell death, Raz’s group found. However, when the treatment was stopped the symptoms returned, suggesting the therapy doesn’t offer long-term protection unless given continuously. Raz said there’s no obvious reason the approach wouldn’t work in people with inflamed bowels, and his Israeli colleagues are now preparing a human trial with the therapy. Preliminary evidence from tissue samples of colitis patients has found the DNA fragments do seem to soothe intestine cells. Current treatments include steroids and Looking at antibody therapy, which can be expensive and cause potentially severe side effects. As for ISS-ODN, "there isn’t too much in terms of side effects that would make you think twice about using it. It’s relatively very safe," Raz said. In other developments affecting the treatment of IBS, a U.S. Food and Drug Administration (news – web sites) (FDA) panel last week took the highly unusual step of recommending the agency lift its ban on a previously approved drug for women with IBS. The drug, Lotronex, was pulled in November 2000 after being linked to serious intestinal side effects and several deaths. Nancy Norton, president of the International Foundation for Functional Gastrointestinal Disorders, testified at the FDA panel hearing in support of bringing back Lotronex. "We are concerned that patients have access to a medication that clearly provides benefit to them," Norton said. The drug "was truly life-altering. It gave them their life back, and then it was taken away from them." Should the FDA follow its panel’s advice — it typically does — Norton said the agency and GlaxoSmithKline, which makes the drug, would need to have an adequate safety plan to protect people who use Lotronex. The prospect of Lotronex’s return dismayed consumer protection advocates who had lobbied the FDA to take the drug off the market. Dr. Sidney Wolfe, director of Public Citizen’s Health Research Group, told the panelists "the reintroduction of Lotronex into the market, even with the restrictions proposed by Glaxo, would be a serious public health mistake, likely, if not certain, to result in the need to ban the drug again." What To Do: To learn more about inflammatory bowel disease, visit the Crohn’s & Colitis Foundation of America. For more on irritable bowel syndrome, try the National Institutes of Health. Please Visit www.ibdcure.com and sign the petition for an IBD postage stamp. All opinions expressed are mine unless otherwise noted. "those that can be offended, will be" … Pastor Don

Response:

Question:

Thanks for posting that Melvyn! Odie

– Hide quoted text — Show quoted text – hope you find this informative. mel More Bowel Bacteria Found in Digestive Diseases Fri Mar 29, 1:19 PM ET By Karla Gale NEW YORK (Reuters Health) – People with inflamed bowels have more bacteria in their colons than healthy individuals, and the amount of bacteria increases with the severity of disease, according to the results of a study. Little is known about the bacteria that interact with the mucosal lining of the intestines, the researchers note. To investigate, they studied the bacterial content–or flora–of colon tissue samples from 305 patients with bowel inflammation and 40 healthy individuals. Patients with inflammation included 28 with colitis that improved within 2 months, 104 with indeterminate colitis, 119 patients with ulcerative colitis, and 54 with Crohn’s disease. Colitis is a general term for inflammation of the colon. Ulcerative colitis and Crohn’s disease, known collectively as inflammatory bowel disease (IBD), are more serious, chronic conditions. Dr. Alexander Swidsinski of Charite Humboldt Universitat in Berlin, Germany, and colleagues tested the biopsied tissue for the presence of bacteria. They found that the concentration of mucosal bacteria increased progressively with the severity of illness. Concentrations were highest in those with Crohn’s disease. The type of bacteria found did not differ significantly among the groups. "Surprisingly, concentrations of mucosal bacteria were higher in non-inflamed than inflamed mucosa," the investigators note in a recent issue of the journal Gastroenterology. The ability to prevent bacteria in feces from closely contacting the epithelial surface, or lining, of the colon is disturbed in patients with IBD primarily due to local inflammatory changes, the researchers conclude. The findings suggest the patient’s response to the Additional bacteria, rather than the infectious agent itself, is responsible, they add. Dr. Jonathan Braun of the University of California, Los Angeles School of Medicine, suggests in an accompanying editorial that the inflammatory disorder appears to enhance the ability of bacteria to adhere to epithelial cells. In an interview with Reuters Health, Braun theorized that bacterial concentrations are lower over areas of inflammation because those epithelia have been sloughed off, resulting in fewer binding sites for bacteria. Overall, however, "people with this disease may be colonized with bacteria that are better at binding to and invading epithelial surfaces," he said. "Another idea is that structures onto which bacteria bind may be more highly expressed in people with these diseases." The implication, he added, is that more microbial binding puts individuals at risk for the disease. Braun said the new findings demonstrate "a greater need for understanding the details of bacterial biology in the gut and a level of interaction between the gut bacteria and the lining of the intestine that we previously hadn’t appreciated." More detailed understanding will help clinicians assess and treat this category of intestinal diseases, he added. SOURCE: Gastroenterology 2002;122:44-54, 228-230.

Response:

Very interesting Mel, thanks for posting. I wonder if this is why some of the antibiotic treatments work for IBD patients — killing off the bacteria. Rebecca

– Hide quoted text — Show quoted text – hope you find this informative. mel More Bowel Bacteria Found in Digestive Diseases Fri Mar 29, 1:19 PM ET By Karla Gale NEW YORK (Reuters Health) – People with inflamed bowels have more bacteria in their colons than healthy individuals, and the amount of bacteria increases with the severity of disease, according to the results of a study. Little is known about the bacteria that interact with the mucosal lining of the intestines, the researchers note. To investigate, they studied the bacterial content–or flora–of colon tissue samples from 305 patients with bowel inflammation and 40 healthy individuals. Patients with inflammation included 28 with colitis that improved within 2 months, 104 with indeterminate colitis, 119 patients with ulcerative colitis, and 54 with Crohn’s disease. Colitis is a general term for inflammation of the colon. Ulcerative colitis and Crohn’s disease, known collectively as inflammatory bowel disease (IBD), are more serious, chronic conditions. Dr. Alexander Swidsinski of Charite Humboldt Universitat in Berlin, Germany, and colleagues tested the biopsied tissue for the presence of bacteria. They found that the concentration of mucosal bacteria increased progressively with the severity of illness. Concentrations were highest in those with Crohn’s disease. The type of bacteria found did not differ significantly among the groups. "Surprisingly, concentrations of mucosal bacteria were higher in non-inflamed than inflamed mucosa," the investigators note in a recent issue of the journal Gastroenterology. The ability to prevent bacteria in feces from closely contacting the epithelial surface, or lining, of the colon is disturbed in patients with IBD primarily due to local inflammatory changes, the researchers conclude. The findings suggest the patient’s response to the bacteria, rather than the infectious agent itself, is responsible, they add. Dr. Jonathan Braun of the University of California, Los Angeles School of Medicine, suggests in an accompanying editorial that the inflammatory disorder appears to enhance the ability of bacteria to adhere to epithelial cells. In an interview with Reuters Health, Braun theorized that bacterial concentrations are lower over areas of inflammation because those epithelia have been sloughed off, resulting in fewer binding sites for bacteria. Overall, however, "people with this disease may be colonized with bacteria that are better at binding to and invading epithelial surfaces," he said. "Another idea is that structures onto which bacteria bind may be more highly expressed in people with these diseases." The implication, he added, is that more microbial binding puts individuals at risk for the disease. Braun said the new findings demonstrate "a greater need for understanding the details of bacterial biology in the gut and a level of interaction between the gut bacteria and the lining of the intestine that we previously hadn’t appreciated." More detailed understanding will help clinicians assess and treat this category of intestinal diseases, he added. SOURCE: Gastroenterology 2002;122:44-54, 228-230.

Response:

Mel – thanks for posting this ….  very interesting. Hugs,  Linda

– Hide quoted text — Show quoted text – hope you find this informative. mel More Bowel Bacteria Found in Digestive Diseases Fri Mar 29, 1:19 PM ET By Karla Gale NEW YORK (Reuters Health) – People with inflamed bowels have more bacteria in their colons than healthy individuals, and the amount of bacteria increases with the severity of disease, according to the results of a study. Little is known about the bacteria that interact with the mucosal lining of the intestines, the researchers note. To investigate, they studied the bacterial content–or flora–of colon tissue samples from 305 patients with bowel inflammation and 40 healthy individuals. Patients with inflammation included 28 with colitis that improved within 2 months, 104 with indeterminate colitis, 119 patients with ulcerative colitis, and 54 with Crohn’s disease. Colitis is a general term for inflammation of the colon. Ulcerative colitis and Crohn’s disease, known collectively as inflammatory bowel disease (IBD), are more serious, chronic conditions. Dr. Alexander Swidsinski of Charite Humboldt Universitat in Berlin, Germany, and colleagues tested the biopsied tissue for the presence of bacteria. They found that the concentration of mucosal bacteria increased progressively with the severity of illness. Concentrations were highest in those with Crohn’s disease. The type of bacteria found did not differ significantly among the groups. "Surprisingly, concentrations of mucosal bacteria were higher in non-inflamed than inflamed mucosa," the investigators note in a recent issue of the journal Gastroenterology. The ability to prevent bacteria in feces from closely contacting the epithelial surface, or lining, of the colon is disturbed in patients with IBD primarily due to local inflammatory changes, the researchers conclude. The findings suggest the patient’s response to the bacteria, rather than the infectious agent itself, is responsible, they add. Dr. Jonathan Braun of the University of California, Los Angeles School of Medicine, suggests in an accompanying editorial that the inflammatory disorder appears to enhance the ability of bacteria to adhere to epithelial cells. In an interview with Reuters Health, Braun theorized that bacterial concentrations are lower over areas of inflammation because those epithelia have been sloughed off, resulting in fewer binding sites for bacteria. Overall, however, "people with this disease may be colonized with bacteria that are better at binding to and invading epithelial surfaces," he said. "Another idea is that structures onto which bacteria bind may be more highly expressed in people with these diseases." The implication, he added, is that more microbial binding puts individuals at risk for the disease. Braun said the new findings demonstrate "a greater need for understanding the details of bacterial biology in the gut and a level of interaction between the gut bacteria and the lining of the intestine that we previously hadn’t appreciated." More detailed understanding will help clinicians assess and treat this category of intestinal diseases, he added. SOURCE: Gastroenterology 2002;122:44-54, 228-230.

Response:

hope you find this informative. mel More Bowel Bacteria Found in Digestive Diseases Fri Mar 29, 1:19 PM ET By Karla Gale NEW YORK (Reuters Health) – People with inflamed bowels have more bacteria in their colons than healthy individuals, and the amount of bacteria increases with the severity of disease, according to the results of a study. Little is known about the bacteria that interact with the mucosal lining of the intestines, the researchers note. To investigate, they studied the bacterial content–or flora–of colon tissue samples from 305 patients with bowel inflammation and 40 healthy individuals. Patients with inflammation included 28 with colitis that improved within 2 months, 104 with indeterminate colitis, 119 patients with ulcerative colitis, and 54 with Crohn’s disease. Colitis is a general term for inflammation of the colon. Ulcerative colitis and Crohn’s disease, known collectively as inflammatory bowel disease (IBD), are more serious, chronic conditions. Dr. Alexander Swidsinski of Charite Humboldt Universitat in Berlin, Germany, and colleagues tested the biopsied tissue for the presence of bacteria. They found that the concentration of mucosal bacteria increased progressively with the severity of illness. Concentrations were highest in those with Crohn’s disease. The type of bacteria found did not differ significantly among the groups. "Surprisingly, concentrations of mucosal bacteria were higher in non-inflamed than inflamed mucosa," the investigators note in a recent issue of the journal Gastroenterology. The ability to prevent bacteria in feces from closely contacting the epithelial surface, or lining, of the colon is disturbed in patients with IBD primarily due to local inflammatory changes, the researchers conclude. The findings suggest the patient’s response to the bacteria, rather than the infectious agent itself, is responsible, they add. Dr. Jonathan Braun of the University of California, Los Angeles School of Medicine, suggests in an accompanying editorial that the inflammatory disorder appears to enhance the ability of bacteria to adhere to epithelial cells. In an interview with Reuters Health, Braun theorized that bacterial concentrations are lower over areas of inflammation because those epithelia have been sloughed off, resulting in fewer binding sites for bacteria. Overall, however, "people with this disease may be colonized with bacteria that are better at binding to and invading epithelial surfaces," he said. "Another idea is that structures onto which bacteria bind may be more highly expressed in people with these diseases." The implication, he added, is that more microbial binding puts individuals at risk for the disease. Braun said the new findings demonstrate "a greater need for understanding the details of bacterial biology in the gut and a level of interaction between the gut bacteria and the lining of the intestine that we previously hadn’t appreciated." More detailed understanding will help clinicians assess and treat this category of intestinal diseases, he added. SOURCE: Gastroenterology 2002;122:44-54, 228-230.

Response:

<VBG  DUH who’s being blonde today?????  LOL  thanks Linda, Reesie

– Hide quoted text — Show quoted text – It’s called Entocort. Hugs,  Linda yes, of interest.  Now, I know I’ve read somewhere else the trade name of Budesonide, but it is escaping me.  Anyone?  Reesie : ) from docguide.com mel Title: Budesonide Effective For Mild/Moderate Paediatric Crohn’s Disease URL: http://www.harcourthealth.com/scripts/om.dll/serve?action=searchDB&se… Bfor=art&artType=abs&id=a119992&nav=abs Journal of Pediatrics, 2002; 140: 75-80 "Evaluation of oral budesonide for treatment of mild and moderate exacerbations of Crohn’s disease in children" By Elda Hauschildt Oral budesonide can be used to treat mild to moderate Crohn’s disease in children. Israeli researchers say that budesonide is more effective than mesalamine and antibiotics. It is less effective than prednisone. "Budesonide should be considered for first-line therapy in mild to moderate Crohn’s disease," suggest investigators with the Israeli Paediatric Gastroenterology Association Budesonide Study Group. They point out budesonide has already been shown to be efficacious in treating mild to moderate Crohn’s in adults. Equal improvement has been seen with budesonide and prednisone. Researchers compared charts of 62 paediatric Crohn’s patients treated with budesonide with those of 58 age-matched patients treated with prednisone. "Among children treated with budesonide, 48 percent had remission, compared with 77 percent of the children treated with prednisone," report investigators from paediatric gastroenterology units at the Edith Wolfson Medical Centre, the Assaf Harofe Medical Centre, the Sheba Medical Centre, the Soroka Medical Centre, Schneider Children’s Medical Centre, Shaare Zedek Medical Centre and Go Here Tel Aviv University, all in Israel. "Among patients who had failed previous medical therapy with mesalamine, 59 percent had remission with budesonide," they add. Researchers note that remission with prednisone was seen in 73 percent of the children who did not achieve remission with budesonide. They note: "Patients responding to budesonide had significantly milder disease compared with non-responders who had remission while taking prednisone."

Response:

from docguide.com mel Title: Budesonide Effective For Mild/Moderate Paediatric Crohn’s Disease URL: http://www.harcourthealth.com/scripts/om.dll/serve?action=searchDB&se… Bfor=art&artType=abs&id=a119992&nav=abs Journal of Pediatrics, 2002; 140: 75-80 "Evaluation of oral budesonide for treatment of mild and moderate exacerbations of Crohn’s disease in children" By Elda Hauschildt Oral budesonide can be used to treat mild to moderate Crohn’s disease in children. Israeli researchers say that budesonide is more effective than mesalamine and antibiotics. It is less effective than prednisone. "Budesonide should be considered for first-line therapy in mild to moderate Crohn’s disease," suggest investigators with the Israeli Paediatric Gastroenterology Association Budesonide Study Group. They point out budesonide has already been shown to be efficacious in treating mild to moderate Crohn’s in adults. Equal improvement has been seen with budesonide and prednisone. Researchers compared charts of 62 paediatric Crohn’s patients treated with budesonide with those of 58 age-matched patients treated with prednisone. "Among children treated with budesonide, 48 percent had remission, compared with 77 percent of the children treated with prednisone," report investigators from paediatric gastroenterology units at the Edith Wolfson Medical Centre, the Assaf Harofe Medical Centre, the Sheba Medical Centre, the Soroka Medical Centre, Schneider Children’s Medical Centre, Shaare Zedek Medical Centre and Tel Aviv University, all in Israel. "Among patients who had failed previous medical therapy with mesalamine, 59 percent had remission with budesonide," they add. Researchers note that remission with prednisone was seen in 73 percent of the children who did not achieve remission with budesonide. They note: "Patients responding to budesonide had significantly milder disease compared with non-responders who had remission while taking prednisone."

Response:

yes, of interest.  Now, I know I’ve read somewhere else the trade name of Budesonide, but it is escaping me.  Anyone?  Reesie : )

– Hide quoted text — Show quoted text – from docguide.com mel Title: Budesonide Effective For Mild/Moderate Paediatric Crohn’s Disease URL: http://www.harcourthealth.com/scripts/om.dll/serve?action=searchDB&se… Bfor=art&artType=abs&id=a119992&nav=abs Journal of Pediatrics, 2002; 140: 75-80 "Evaluation of oral budesonide for treatment of mild and moderate exacerbations of Crohn’s disease in children" By Elda Hauschildt Oral budesonide can be used to treat mild to moderate Crohn’s disease in children. Israeli researchers say that budesonide is more effective than mesalamine and antibiotics. It is less effective than prednisone. "Budesonide should be considered for first-line therapy in mild to moderate Crohn’s disease," suggest investigators with the Israeli Paediatric Gastroenterology Association Budesonide Study Group. They point out budesonide has already been shown to be efficacious in treating mild to moderate Crohn’s in adults. Equal improvement has been seen with budesonide and prednisone. Researchers compared charts of 62 paediatric Crohn’s patients treated with budesonide with those of 58 age-matched patients treated with prednisone. "Among children treated with budesonide, 48 percent had remission, compared with 77 percent of the children treated with prednisone," report investigators from paediatric gastroenterology units at the Edith Wolfson Medical Centre, the Assaf Harofe Medical Centre, the Sheba Medical Centre, the Soroka Medical Centre, Schneider Children’s Medical Centre, Shaare Zedek Medical Centre and Tel Aviv University, all in Israel. "Among patients who had failed previous medical therapy with mesalamine, 59 percent had remission with budesonide," they add. Researchers note that remission with prednisone was seen in 73 percent of the children who did not achieve remission with budesonide. They note: "Patients responding to budesonide had significantly milder disease compared with non-responders who had remission while taking prednisone."

Response:

It’s called Entocort. Hugs,  Linda

yes, of interest.  Now, I know I’ve read somewhere else the trade name of Budesonide, but it is escaping me.  Anyone?  Reesie : ) from docguide.com mel Title: Budesonide Effective For Mild/Moderate Paediatric Crohn’s Disease URL:

http://www.harcourthealth.com/scripts/om.dll/serve?action=searchDB&se… – Hide quoted text — Show quoted text – Bfor=art&artType=abs&id=a119992&nav=abs Journal of Pediatrics, 2002; 140: 75-80 "Evaluation of oral budesonide for treatment of mild and moderate exacerbations of Crohn’s disease in children" By Elda Hauschildt Oral budesonide can be used to treat mild to moderate Crohn’s disease in children. Israeli researchers say that budesonide is more effective than mesalamine and antibiotics. It is less effective than prednisone. "Budesonide should be considered for first-line therapy in mild to moderate Crohn’s disease," suggest investigators with the Israeli Paediatric Gastroenterology Association Budesonide Study Group. They point out budesonide has already been shown to be efficacious in treating mild to moderate Crohn’s in adults. Equal improvement has been seen with budesonide and prednisone. Researchers compared charts of 62 paediatric Crohn’s patients treated with budesonide with those of 58 age-matched patients treated with prednisone. "Among children treated with budesonide, 48 percent had remission, compared with 77 percent of the children treated with prednisone," report investigators from paediatric gastroenterology units at the Edith Wolfson Medical Centre, the Assaf Harofe Medical Centre, the Sheba Medical Centre, the Soroka Medical Centre, Schneider Children’s Medical Centre, Shaare Zedek Medical Centre and Tel Aviv University, all in Israel. "Among patients who had failed previous medical therapy with mesalamine, 59 percent had remission with budesonide," they add. Researchers note that remission with prednisone was seen in 73 percent of the children who did not achieve remission with budesonide. They note: "Patients responding to budesonide had significantly milder disease compared with non-responders who had remission while taking prednisone."

Response:

Title: CDDW: Study Suggests Link Between Anxiety and Ulcerative Colitis Flares  "CDDW: Study Suggests Link Between Anxiety and Ulcerative Colitis Flares" By Louise Gagnon Special to DG News MONTREAL, QC — February 4, 2002 — A study has identified a link between autonomic nervous system abnormalities and anxiety in patients with ulcerative colitis. Investigators speaking here during Canadian Digestive Diseases Week, the annual meeting of the Canadian Association of Gastroenterology, say their results showed sympathetic activation was linked to colitis symptom severity. "Animal studies have shown that changes in the autonomic nervous system are correlated with changes in the severity of colitis amongst animals," explained Dr. Subhas Ganguli, principal researcher and clinical scholar at McMaster University Medical Centre, in Hamilton, Ontario, Canada. "Human studies have shown that a subset of patients with inflammatory bowel disease have either abnormalities of the vagal or the sympathetic nervous system." The researchers hypothesised that patients with ulcerative colitis would have increased activity of their sympathetic nervous system while Crohn’s patients would have increased activity of the parasympathetic nervous system, and that increased sympathetic activity would be associated with increased measures of anxiety, Dr. Ganguli explained. They enrolled 12 patients with Crohn’s disease and 12 with ulcerative colitis and matched them against healthy, historical controls. Participants underwent heart variability testing to determine heart rate and low frequency, referring to activity of the sympathetic nervous system, or high frequency, associated with activity of the parasympathetic nervous system. They also completed questionnaires on quality of life and anxiety or depression. Results showed statistically significant differences on low frequency and high frequency testing between patients with ulcerative colitis and controls. Crohn’s patients were not different from controls on any measurements of heart rate variability. "The changes in anxiety come before flares of disease and do not merely reflect acute symptoms," Dr. Ganguli said. "This implies an association between anxiety and flares of disease. It emphasizes that when patients say flares of their disease could be related to stress, one should not discount that fact." An intervention study aimed at minimizing stress and preventing disease would be worthwhile conducting, he added. Dr. Ganguli’s study was entitled "Patients with Ulcerative Colitis Demonstrate Abnormalities of Autonomic Function which are Correlated with Measures of Anxiety".

Response:

Thanks Mel — the doc could have just called me, I would have told him the same thing (and prolly saved him some research money. . . ) Seriously, I’m not sure I understand the difference between sympathetic nervous system and parasympathetic nervous system — can anybody out there tell me the difference in layman’s terms? (a BLONDE layman that is) Rebecca

– Hide quoted text — Show quoted text – Title: CDDW: Study Suggests Link Between Anxiety and Ulcerative Colitis Flares  "CDDW: Study Suggests Link Between Anxiety and Ulcerative Colitis Flares" By Louise Gagnon Special to DG News MONTREAL, QC — February 4, 2002 — A study has identified a link between autonomic nervous system abnormalities and anxiety in patients with ulcerative colitis. Investigators speaking here during Canadian Digestive Diseases Week, the annual meeting of the Canadian Association of Gastroenterology, say their results showed sympathetic activation was linked to colitis symptom severity. "Animal studies have shown that changes in the autonomic nervous system are correlated with changes in the severity of colitis amongst animals," explained Dr. Subhas Ganguli, principal researcher and clinical scholar at McMaster University Medical Centre, in Hamilton, Ontario, Canada. "Human studies have shown that a subset of patients with inflammatory bowel disease have either abnormalities of the vagal or the sympathetic nervous system." The researchers hypothesised that patients with ulcerative colitis would have increased activity of their sympathetic nervous system while Crohn’s patients would have increased activity of the parasympathetic nervous system, and that increased sympathetic activity would be associated with increased measures of anxiety, Dr. Ganguli explained. They enrolled 12 patients with Crohn’s disease and 12 with ulcerative colitis and matched them against healthy, historical controls. Participants underwent heart variability testing to determine heart rate and low frequency, referring to activity of the sympathetic nervous system, or high frequency, associated with activity of the parasympathetic nervous system. They also completed questionnaires on quality of life and anxiety or depression. Results showed statistically significant differences on low frequency and high frequency testing between patients with ulcerative colitis and controls. Crohn’s patients were not different from controls on any measurements of heart rate variability. "The changes in anxiety come before flares of disease and do not merely reflect acute symptoms," Dr. Ganguli said. "This implies an association between anxiety and flares of disease. It emphasizes that when patients say flares of their disease could be related to stress, one should not discount that fact." An intervention study aimed at minimizing stress and preventing disease would be worthwhile conducting, he added. Dr. Ganguli’s study was entitled "Patients with Ulcerative Colitis Demonstrate Abnormalities of Autonomic Function which are Correlated with Measures of Anxiety".

Response: