Question:

Hi David, I agree about the "funny-stuff" in gastroenterology.  I’m amazed that this info. is out there and generally being ignored.  Probably because (and call me a conspiracy theorist here – but conspiracy’s in multi-national companies do exist!) there’s a lot of money poured into research and medicine to treat the symptoms of IBD/IBS, rather than the cause.  Think of all the gastros, drug companies, researchers etc who would not benefit from everyone being tested and treated correctly. Mind you the path. labs would benefit from the sheer cost of testing three samples in preservative kits (3 x the cost of a regular stool test)! Regardless, I really feel that the connection between amoebic paras and IBD/IBS should be looked into more closely…..the fact that many people either get there symptoms under control or get better after taking beneficial bacteria for their bowel must point to something significant.  The purpose of this approach is to crowd out the bad stuff and replace it with the good stuff.   Researchers used a similar approach recently when they used anti-amoebic drugs to kill off pathogenic E.coli and then used non-pathogenic strain of E.coli to replace it after the drug therapy. I think it was about 80% of people with colitis in this study got better. This story was going around on newsgroups as the "worm" treatment for colitis.  I’m going to put this on my web page also, so please check back in a week or so. Regards, Jackie Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

I noticed your critical comment, perhaps you could add more to support your views since I for one have been suffering from this affliction and am desperate for answers. <supp…@fluxsoft.com

wrote in message

news:support-6A87F2.00322803022000@news.erols.com… – Hide quoted text — Show quoted text -

In article <qNPl4.410$3v6.15…@newsread2.prod.itd.earthlink.net, "David W." <dewattsNOS…@earthlink.net wrote: This is excellent, I’m glad to see this type of research breakthrough,

and

even happier to see people that share them for our collective knowledge. Research breakthrough? I don’t even see where the research is.

Response:

In article <87ek7s$9d…@enyo.uwa.edu.au

, "Brennan"

– Hide quoted text — Show quoted text -<sh…@cyllene.uwa.edu.au

wrote: I noticed your critical comment, perhaps you could add more to support your views since I for one have been suffering from this affliction and am desperate for answers. <supp…@fluxsoft.com wrote in message news:support-6A87F2.00322803022000@news.erols.com… In article <qNPl4.410$3v6.15…@newsread2.prod.itd.earthlink.net, "David W." <dewattsNOS…@earthlink.net wrote: This is excellent, I’m glad to see this type of research breakthrough, and even happier to see people that share them for our collective knowledge. Research breakthrough? I don’t even see where the research is.

I think that page you saw was manufacturered for the purpose of fulfiling those desperate for answer. That is, they are looking to appease those out there desperate for answers, so extend real information beyond the limits of reality and sometimes even make information up to give one something to believe in.

Response:

The support guy who is critical seems to think ALL stomach problems is caused by celiac. He/she doesn’t seem to believe in any other type of stomach ailment. Just avoid it’s posts. http://members.xoom.com/renditions/americanpiesample.wav

Response:

Please visit my website – research on this amoebic parasite shows that it causes IBS symptoms and worse in some people.  Read emails page from others who were diagnosed for years with IBS and found out they have this parasite.  Research indicates it can cause to the bowel wall resulting in colitis! Jackie http://member.rivernet.com.au/bara/ Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

This is excellent, I’m glad to see this type of research breakthrough, and even happier to see people that share them for our collective knowledge.  I for one believe that there is just too much "funny-stuff" going on with this gastro business to think that it "all-in-the-mind". Thanks for the post! David "Jackie" <b…@rivernet.com.au

wrote in message

news:8789fd$k5s$1@nnrp1.deja.com… – Hide quoted text — Show quoted text -

Please visit my website – research on this amoebic parasite shows that it causes IBS symptoms and worse in some people.  Read emails page from others who were diagnosed for years with IBS and found out they have this parasite.  Research indicates it can cause to the bowel wall resulting in colitis! Jackie http://member.rivernet.com.au/bara/ Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

Hi Jackie, I am intrigued by the info on your web site. I have never been diagnosed with ibs but my doctor thinks I may have incomplete coeliac disease. However, my symptoms match what I have heard about ibs but I have begun to suspect that I have a parasitic infection (I thought possibly some sort of super yeast – I’m not the slightest bit knowledgable in microbiology!). My symptoms seem to build up depending on what I eat until they burst making me think that I was growing a colony of something (probiotics also help a lot). I would also get dandruff very badly around the same time. Wheat is the main culprit but if I have wheat and sugar then things can turn bad fairly quickly. I have two questions for you if you don’t mind: 1. Has this parasite ever been connected to dandruff? 2. How is this parasite contracted? Thanks in advance. Dermot Jackie <b…@rivernet.com.au

wrote in message

news:8789fd$k5s$1@nnrp1.deja.com… – Hide quoted text — Show quoted text -

Please visit my website – research on this amoebic parasite shows that it causes IBS symptoms and worse in some people.  Read emails page from others who were diagnosed for years with IBS and found out they have this parasite.  Research indicates it can cause to the bowel wall resulting in colitis! Jackie http://member.rivernet.com.au/bara/ Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

Amoebic parasites survive on the food you ingest.  My personal feeling is that foods which are "heavier" – ie carbs such as wheat, potatoes etc take longer to break down and can feed parasites.  The same thing happens to me – my symptoms build up if I eat these things and then I come down with a bad flare.  Sugar is used in microbiology to grow bacteria…so I guess the same thing would apply to amoebic parasites? Can any microbiologists out there confirm this??? Another explanation could be that infections such as this throw the whole of the microflora in the bowel out of whack and all foods to varying degrees cause a reaction.  I think it’s probably a bit of both. I haven’t heard of dandruff as a symptom – I’ll check it out though. There are too many questions, and not enough research. About how do you catch DF – basically in a similar way to most other parasites – faecal/oral route – ie. you could have eaten from a take-away shop and the assistant hasn’t washed their hands after visiting the loo.  This particular parasite is found highest in "closed communities" ie. kindergartens, nursing homes etc.  It is not uncommon for it to go through families.  Some people can be carriers but show no symptoms.  There are lots of amoebic parasites which give no symptoms in some but do in others.  Researchers haven’t come up with any clear answers – except that they think it could be different strains of the same bug, or based on the bowel flora – if it’s in balance then these things won’t get out of hand…if not you’re in trouble! Hope this helps, Jackie – Hide quoted text — Show quoted text -

super yeast – I’m not the slightest bit knowledgable in

microbiology!). My

symptoms seem to build up depending on what I eat until they burst

making me

think that I was growing a colony of something (probiotics also help a

lot).

I would also get dandruff very badly around the same time. Wheat is the main culprit but if I have wheat and sugar then things

can turn

bad fairly quickly. I have two questions for you if you don’t mind: 1. Has this parasite ever been connected to dandruff? 2. How is this parasite contracted? Thanks in advance. Dermot Jackie <b…@rivernet.com.au wrote in message news:8789fd$k5s$1@nnrp1.deja.com… Please visit my website – research on this amoebic parasite shows

that

it causes IBS symptoms and worse in some people.  Read emails page

from

others who were diagnosed for years with IBS and found out they have this parasite.  Research indicates it can cause to the bowel wall resulting in colitis! Jackie http://member.rivernet.com.au/bara/ Sent via Deja.com http://www.deja.com/ Before you buy.

Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

Question:

I wonder if anyone out there can help my husband who has had ulcerative colitis and a number of other problems for years, and who, for the last two months, is also suffering from acute pain, joint stiffness, edema and exhaustion.   He has taken Prednisone for 38 years for the ulcerative colitis and is now off of it.  He began decreasing his dosage (5mg four times a day) in December and by mid-February was off totally.

20mg a day is not a very low dose.  Taken at this dose for years, it can cause osteoporosis and may be contributing to his hip problems. Prednisone also gives a false sense of well-being.  People who sleep 8 hours a night without prednisone may only sleep 3 or 4 with it and still feel rested.  The arthritis that is causing his joint pain and swelling may have always been lurking there, but the prednisone would have alleviated the symptoms.  Most people find that their appetite is significantly greater when taking prednisone.  Your body feels warmer, so that you will dress in lighter weight clothing or sweat at night. Whether or not there is such a thing as prednisone "withdrawl" is debatable, BUT, when you stop the prednisone you will feel your body’s aches and pains, have less energy and less appetite, and feel colder again.  If, like your husband, you’ve been on prednisone a long time, this can all feel bad even though it may be his body’s version of normal. We’re seeing a rheumatologist (who thinks it is arthritis and osteoporosis

Likely after years of prednisone, — but why such a rapid escalation of those problems?)

Prednisone makes everything feel artifically "good."  Stopping the prednisone would explain a lot of his symptoms. a gastrointerologist (who says operate on his colon),

Is his colitis active?  I’d ask more questions here. orthopedist (who says replace the fused hip)

You may want to see what the rheumatologist can do for the pain first before resorting to major surgery.  But, years of prednisone use can do a lot of irreversible damage. and cardiologist (who says treat the heart disease) at a Boston teaching hospital but we have no diagnosis —

If you have no diagnosis, it probably warrants a second opinion.  I know of no clinical evidence that would relate this to the colitis or the prednisone. By the way, drugs in addition to Prednisone that he has taken long-term and is still on are Azulfidine (500 mg x 6), folic acid (1 mg x 2), Phonobarbital (15 mg x 3), Calcium, Aleve/Tylenol.

Azulfidine is a standard treatment for colitis.  There are others he can try if this isn’t working without the prednisone.  Folic Acid is a vitamin supplement because his doctor may suspect that the colitis is interfering with his body’s ability to absorb sufficient amounts from the food he eats.  Phenobarbital and Tylenol are for the pain.   Calcium supplements help counteract the prednisone’s tendency to leach calcium from your bones. Not to lead you, but do you think his problems may be due to Prednisone withdrawal?  

Certainly a factor. If so, how long does it last?  What can we expect?  Do you have any experience with very small doses of Prednisone? Any other ideas?

Many people report improvement in their overall feeling of well-being and in the joint-aches in three to four months.  Some say much longer. Again, 20 mg a day of prednisone is not a very small dose.  Most doctors prescribe 40 to 60 to initially calm a flare-up, then taper to 20 and beyond.  A typical maintenance dose when used long-term in conjunction with other drugs such as Azulfidine would be 5 mg a day or less.  In my experience, if 20 mg were needed for maintenance, my doctors would try other drugs or, that failing, would recommend surgery.  The risk of osteoporosis is just too great. If his current gastroenterologist is the same one who prescribed all the prednisone, I’d find a new GI – quickly. The rheumatologist (and/or the orthopedist) may be his best ally right now.  Ask a lot of hard questions about the effects of long term prednisone use.  Be aware that he may be hesitant to suggest that another doctor used poor judgement and therefore, may not volunteer the information. On a positive note, rheumatologists can do a lot for the pain and swelling.  There are a lot of good antiinflammatory drugs available.   He can also get cortisone shots or gold shots directly into the affected joints and see some immediate pain relief. Good luck to you and your husband.   Lorraine

Response:

I’m not a not a doctor, but have experience related to your husband’s problems.  I have had UC for 27 years, and have been on Prednisone for the last 20 months.  Over the last 3 months, I have been tapering down the Prednisone dosage from 30 mg/day to the current 9 mg/day.  Withdrawal symptoms that I have noticed have been joint and muscle aches, especially in the shoulders, back and hands, swelling (edema) in the hands and legs, fatigue, and depression.  My research tells me that these withdrawal symptoms could last up to one to two years, especially after long-term use of Prednisone.   Your husband should get a bone density test (low level X-rays) to see if he has significant bone loss due to the long-term use of Prednisone.  He also could have two tests done to determine if his adrenal glands are recovering from the Prednisone suppression.  One is an ACTH stimulation test and I don’t remember the second one. Anthony Longo, our resident pharmacist, can probably be more informative about other side-effects. Bill Lazar Bill Lazar Paetzold Square Bass Recorders 1377 Bluebird Ct. Sunnyvale, CA 94087 (408)737-8228 (phone & Fax)

Response:

I think you’re on the mark in suspecting prednisone withdrawal.   I was on prednisone for about 16 months, much less time than your husband, and got off early last November.  I had a lot of joint pain, severe fatigue/malaise, not to mention acne.  I had gone onto cortenemas about a year ago, as part of a strategy to allow me to successfully taper off the prednisone, and my ankles and feet swelled up when I started that, though not apparently in response to reducing prednisone.   What clinches the case for me is that I’ve now gone back on prednisone due to an increase in my UC symptoms, but also because I was feeling so awful otherwise (I was also running low-grade fevers about half the time, which my GI doc and I believe is an indicator for the activity of my UC)…. I started off slowly, with 10 mg, then ramped up to 30 mg. over a couple of days… and on even 10 mg, I started to have more energy and less joint pain. I don’t think the effect was only psychological, because I hadn’t expected the pred to have any effect at 10 mg, though I don’t discount the possibility that that could be a factor. My understanding is that when one has been on prednisone for an extended period of time (more than six months, so your husband certainly qualifies), the natural function of the adrenal gland is suppressed, and this leads to some of the problems we experience.  Others on the list have suggested it may take a year or longer for these withdrawal symptoms to clear.  It sounds like yuor husband may be having additional problems, though, beyond the more garden-variety ones we hear about here.  I’m trying to recall whether pred can potentially have cardiac side effects: the PDR should say, but the most important thing of course is to discuss with a good doctor. For me, the best therapy for the joint pain was to regularly do stretching exercises.  Physical therapy consisting of ultrasound with hydrocortisone cream helped with joint problem I had before being diagnosed with UC, but which I now believe was linked to the UC.  The stretching doesn’t get rid of the pain, but it alleviates it and helps you retain flexibility and range of motion.  Others on this list have suggested that fybromyalgia is a side effect of prednisone withdrawla and have suggested consulting a rheumatologist. I wish I had an answer to the fatigue question.  I’ve talked to my GI doc about B-12, mentioned on this list, and it appears to be appropriate more for people with Crohn’s, because the location where B-12 is absorbed is affected by Crohn’s but not (not always??) by ulcerative colitis.  I found that I had to readjust my assessment of what I could accomplish to match my reduced energy level- something I was loathe to do (which probably contributed to the fatigue!) Now that I’ve been back on pred for a little over a week, I’m feeling less feverish, more energetic (I actually woke up feeling like cleaning closets this morning… a sure sign that prednisone mania is upon me!), and have very minimal joint pain.  My GI symptoms are less, though I’m still running to the bathroom 6-9 times per day… but I’m in the early weeks of being on Imuran, and the intent is to use the pred as a bridge until the Imuran kicks in, in maybe three more months. Since the prednisone withdrawal symptoms seem to be linked to adrenal gland suppression, my husband has wondered whether an endocrinologist could help.  I haven’t talked to my GI doc about this one yet, but it seems like a reasonable avenue. Sorry to be so long-winded, but I hope this is helpful.  Best wishes to both of you. Betsy

Response:

Your husband’s latest ailments sound familiar even though our situations are different.  I also have UC and have for 9 years (I am now 26 yrs old).  I have been on azulfidine, prednisone, Rowasa enemas, and clindex all at various times with little side effects besides moon face.  But, I had a flare up this past December and my doctor put me back on everything and all was well until I finally gave in to strange problems in March.  I had major joint pain, swelling of various joints including my ankles, wrists, fingers, etc.  I finally couldn’t even walk but I kept trying to ignore it.  I was exhausted and the stress was bothering my UC more although that was pretty much under control.  I was horrible to live with for a couple of weeks.  I went to my doctor and the first thing he did was a blood test to check my white blood cell count.  BINGO!  I had no immune system.  I joked with my doctor when he said if I get the chills or a fever to go right to the emergency room and his response was quite serious.  All he did was totally take me off the azulfidine (I was on 8 tablets daily) and increased my Prednisone a little and two days later my WBC count was almost back to normal.  It was really scary.  Just to add more drama, two weeks later I found out I was pregnant.  I asked my doctor if that could have been part of the problem and he didn’t have a definite answer.  Of course, that’s not really relevant for your husband but I thought it was pretty wild.  I would say to have the doctor check that(his WBC count) if he hasn’t already.  If your husband needs the sulfasalazine and that’s what’s causing the problem, it’s simply a matter of stopping or switching the type of drug he uses to get the active component of the drug.   I hope that helps you.  Let me know how it turns out.   Martha  

Response:

Has *any* doctor tested him for adrenal exhaustion?  There is some kind of blood test for this, and it’s the obvious thing to look at after someone has been on that dose of prednisone for that many years. This should be looked into IMMEDIATELY as it’s a dangerous state to be in.  From what I understand it’s totally treatable with a very low dose of prednisone or some other steroid.

Response:

I wonder if anyone out there can help my husband who has had ulcerative colitis and a number of other problems for years, and who, for the last two months, is also suffering from acute pain, joint stiffness, edema and exhaustion.   My husband is 66 year old, has been quite active until two months ago (we went sailing in the Virgin Islands in February).  He’s a lawyer in private practice; he has been a "good" patient over the years, doing what the doctors advised.   He has taken Prednisone for 38 years for the ulcerative colitis and is now off of it.  He began decreasing his dosage (5mg four times a day) in December and by mid-February was off totally. I’m trying to track down the source of his current most pressing ailments — we wonder if they could be related to his withdrawal from Prednisone — if not, what? His current problems are a veritable potpourri — many of them are pretty frightening.  He has swelling in his feet, calves, thighs and in his right hand — all of which prompted an echo-cardiogram in March that revealed probable mild congestive heart failure but did not show heart disease sufficient to cause the massive and stubborn swelling he is experiencing.  He has been on the diuretic Lasix, for about two weeks and it reduces the swelling, but mostly at night — he gets up and it is back again.  He had to buy new shoes because of the swelling — went from a size 8 1/2 to 11 1/2.  And most troubling — he has excruciating pain in his joints. He is exhausted — wants to lie down (probably because of the pain as well as fatigue) most of the time; has lost his appetite nearly totally and about once a day gets bone-chilling cold, needing to be wrapped in an electric blanket and quilts, even on warm days.   We’re seeing a rheumatologist (who thinks it is arthritis and osteoporosis — but why such a rapid escalation of those problems?), a gastrointerologist (who says operate on his colon), an orthopedist (who says replace the fused hip) and cardiologist (who says treat the heart disease) at a Boston teaching hospital but we have no diagnosis — his first visit to a doctor about these problems was in mid-January. Cancer has been ruled out. Also, possibly worth mentioning because of the timing — in December he had a e. coli infection in his prostate which was apparently effectively treated with Bactrin.   By the way, drugs in addition to Prednisone that he has taken long-term and is still on are Azulfidine (500 mg x 6), folic acid (1 mg x 2), Phonobarbital (15 mg x 3), Calcium, Aleve/Tylenol. Not to lead you, but do you think his problems may be due to Prednisone withdrawal?  No doctor has suggested this but we wonder if it may not be that, his having taken it for so long.  If so, how long does it last?  What can we expect?  Do you have any experience with very small doses of Prednisone? Any other ideas? Your thoughts and ideas would be greatly appreciated.

Response:

Question:

Also, the active ingredient of the Aloe vera plant, acemannan, developed by Carrington Laboratories of Irving, Texas, is undergoing placebo-controlled clinical study. It reportedly is very useful in controlling symptoms and promoting healing. I have volunteered to participate. Because I do not know whether I will be one of the unfortunate ones to be assigned to the placebo group, I will not be able to report back for sure. Louis A. Carliner, Perfect Vision Tuneup, Rockville, Maryland

Response:

Hello everybody,   My dad was diagnosed with colitis a couple of months ago.  He went into the hospital and was treated with the standard drug – sulfasalazine.  A couple of months later, during a routine follow up blood test, it was noted that his white blood cell count was extremely low.  He was immediately hospitalized again and was now suffering from agranulocytosis due to an allergic reaction to the medicine given to treat the colitis.  He has since recovered from that and was given new medicine to take, I can’t remember the name exactly, azuldisine or something.  My mom called me yesterday and told me that my dad was experiencing another allergic reaction to this new medicine and she wanted me to use the internet to search for any alternative treatments. Does anybody have any recommendations for any kind of alternative treatments for colitis for patients who are allergic to the standard drugs and develop agranulocytosis from taking them ?

I didn’t have any problems with sulfasalzine but my doctor switched me to Pentasa a couple of years ago, because he thought it would be more effective.  The active ingredient is mesalimine, the same as in the enema Rowasa, which I also use.  They seem to work for me.

Response:

Kris, I was diagnosed with uc in 1993.  Like your father, I was allergic to sulfa based drugs.  There is a medication called asacol, which has the same components of sulfasalazine, but no sulfa.  There are also many other helpful medications, but to my disadvantage they did not help me.  I had my colon removed in March 1995.  I now have a J-Pouch.  Good luck! Angela    

Response:

Sulfasalazine is the generic of Azulfidine.  They are the same chemically, so it is not surprising that he had the same reaction to both.  There are variants of this drug that often do not cause the same side effects.  See a good gastroenterologist for advice.   There are also some experimental treatments being tested.  Interleukin trials are being conducted and they are looking for patients in certain geographical areas.  Initial results are extremely promising. Reflorastation (replacing the intestinal flora with non-pathogenic ones) is another experimental treatment being used by a few doctors. Bill Bill Lazar Paetzold Square Bass Recorders 1377 Bluebird Ct. Sunnyvale, CA 94087 (408)737-8228 (phone & Fax)

Response: