DaveF Case History

davef · Postby **davef** » Thu Sep 06, 2001 9:37 pm

I was on antibiotics 15 months ago for 4-5 months. Had no symptoms really, just some mild diarrhea until January this year. Was treated with Flagyl a couple times but would test positive after finishing course of treatment. Flagyl did not work for me. In late June took Vanco for 10 days. Cdiff went away, then came back as colitis. Doctor's guess is that vanco killed the weaker strain, then colonized the stronger strain in my large intestine. So now it was much worse than ever with severe burning pain. Started 6 weeks of Vanco, at higher doses. Now pulse dosing. Still burning pain... colonoscopy last week... no pseudomembranes showing, only some small white lesions. Pain going away slowly over weeks on a liquid diet (ensure, protein bars, rice only). Pulse dosing on and off (exactly by Lauren's method by the way, doc worked with me on that). Now waiting for biopsy results from lesions, but pain almost gone. No diarrhea, system seems to be returning to normal finally. But uncertainty waiting for biopsy results... Some certainty for ME ONLY: - Flagyl had nervous system side effects that lasted for weeks after going off it (tingling hands and palpitations) - Flagyl did not work for me (last try was 21 days, tested positive 4 days after finishing). - Vanco was partially absorbed systemically by my body (cold hands, nausea), however this got better the longer I took it. Confirmed this to be true during pulse dosing phase (off-pulse problems went away). But 2 months of daily nausea is unpleasant to say the least. - Vanco definitely worked against the c-diff, but as my GI doctor said "most family doctors just don't put you on it long enough". - Chloresterym (aka Questran) only helped get rid of the toxin, it was very counter productive for my particular lesions because it caused constipation which hurt very badly (however DO NOT avoid it because of my experience, this was particular to my case). - Culturelle must be helping restore normal flora. I believe in it!! - Going to try Florastor (the yeast the european's use that I can't remember how to spell here). But waiting till off vanco to try this. - Yogurt I thought was good, but being lactose intolerant and having Culturelle, I stopped Yogurt... that doesn't mean anyone else should. - Exercise, eating right, positive attitude, never giving up all help!!!!! - And finally, my own belief... doctors are trained experts--just like my stock broker. They know WAY more than I do, but that does NOT mean they know everything and are god-like. I question them, disagree sometimes, and do my own research. I argued alot and didn't just accept what was handed to me without being aggressive. My doctor made light of me doing my own research, I told him to stick that opinion in his ear. Then he said I should have the colonoscopy just in case the pain was something more serious... I listened to him! They are not gods, but they are trained in this (well GI specialists are). My advice is to find an expert GI doctor, but learn on your own so you know what to ask, what to disagree with. It's YOUR body. The doctor cannot feel what you feel or be there every time you feel sick or have diarrhea. But being trained in it, they know much more about OTHER diseases of the colon, which can happen. So I listened too.

davef · Postby **davef** » Fri Sep 07, 2001 12:19 am

Are you off Flagyl and Vanco now? Flagyl can take weeks for effects to go away for some people. Vanco caused bad stomach acid for me. CDiff and the treatments screw up your digestive tract. It can take time on either drug apparently, but for different reasons. Remember these are antibiotics, and although they kill cdiff, they also wreak havoc on your nervous and digestive system somewhat. So it depends... if you've been off both for more than a month, then maybe something else is going on. But if you are still on either, or just off for a week or so... well, it took a little longer than than for my system to adjust.

davef · Postby **davef** » Sat Sep 22, 2001 10:41 pm

Update - Sept 22, 2001 My last bout with CDiff was over 6 weeks ago. Still tapering (pulse dosing) off the Vanco. I had systemic reaction to Vanco somewhat (cold, tingling, sometimes painful hands, plus slight nausea). Had a Colonscopy that found no pseudomembranes or colitis, but I did have lesions. Nearest I can figure, is that the "colitis" pain I thought I had was these lesions, and never occured until starting Vanco. As I pulse dosed down, the pain subsided... even coming back on days on was back on the Vanco. The results of the Colonoscopy and the Vancomycin... so far the cdiff tests all coming back negative. Doctor did biopsies during colonscopy and sent stool samples to a lab down south (some major center down there for this stuff) and all tests came back normal. GI Doc said Vanco may have caused liver blood test to be off, but that was not unusual, so in 2 months getting liver blood test levels again. GI Doc also said Vanco was causing all the bad stomach acid I was having. Zantec helped keep it in check while on the Vanco. Followed Lauren's pulse dosing recipe with some modifications as my downstairs felt iffy. Yaay Lauren!!! Thank you so, so much for posting that. Doctor was interested in it. He stressed that pulse dosing is not a taught, standard practice for cdiff in Gastroenterology, but he worked with me after so many positive tests over the past 6 months. So that's my update. I still have very sensitive bowel and have to be real careful. Vanco seems to have worked, but also seems to have really thrown my digestive tract way toward the sensitive side. It will take some time to get back to normal... and of course I hope on top of hope that the CDiff never flares up again. Since CDiff is naturally occurring, I don't believe it's "gone", it's just under control finally. I take Culturelle every day, drink Soy Milk, and the only dairy is StonyField Farm yogurt. I am eating vegetables and rice alot more, salmon and more ginger (ginger reduces inflamation, read Dr. Weil). Less meat, less processed food, and no fried or fast food for me. Thank you all for your help through this, especially Sam, Bobbie, and Lauren!!!!! You made a difference in my life for the better. I know it could come back again, but I am prepared for it. Knowledge is power. Thank you!!!

davef · Postby **davef** » Sat Oct 20, 2001 10:43 am

Update - Oct 20, 2001 I finished the pulse dosing and stopped the Vanco. And 7 days later, the CDiff came back again. Oh well. Have to keep trying.

davef · Postby **davef** » Sun Nov 18, 2001 1:00 am

Latest and greatest... Nov 17, 2001 I was on Vanco for almost 5 months, and was always absorbing it systemically (which is very rare). All of a sudden last week, the side effects of extreme pain/cold in the extremities got very, very bad. So now I cannot take Vanco or Flagyl. But I've come to realize that my c-diff was technically "mild" but recurrent. Now... the logic of Synsorb can also be done with Questran in mild sufferers (or so Dr. Lamont's article at <a href="http://www.pufs.com/cdiff/lamont-cdiff.html" target="_blank">http://www.pufs.com/cdiff/lamont-cdiff.html</a> says). My GI doctor agreed I HAVE to stop the Vanco for a while due to the side effects. And I go to see Dr. Lamont in a week or so. GOOD NEWS: The Culturelle, FloraStor, and Questran seem to have it under control. Could it be that the Vanco beat down the c-diff finally or that the FloraStor is working? Questran seems to help and so does Pepto Bismol (which has some antibiocidal effects unlike other anti-diarrhea medicine). So at this point, it's finally under control without Vanco... SO FAR. I'll see what Dr. Lamont says and let everyone know.

davef · Postby **davef** » Thu Nov 29, 2001 11:32 am

Update: Nov 29, 2001 In my case, I just recently finished another month of Vanco. That made almost 5 months of Vanco. I also have been taking Florastor and Culturelle. 2 weeks ago I stopped the Vanco, and it has not back yet (first time this has happened). I saw Dr. Lamont today, and in my case, which was mild but almost non-stop cdiff, he said that the best thing is to let the flora return to normal on it's own. He said that unless I had more severe symptoms like fever, extreme diarrhea, etc that they wouldn't even do tests for it. So my case is not as bad as many of you folks out there, but scary and bothersome nonetheless. It just WOULD NOT go away no matter what I did. So I am going to continue Questran (to absorb the toxin and solidify things) and Florastor for a few more weeks, then stop. He seemed to value Florastor (s.boulardii) more than the Culturelle because more is known about s.boulardii. He also talked about Kefir, which I made a new post about. He talked about immunotherapy for older patients who may have an impared immune system, but considering my age that wasn't a concern for me. He made it sound like c-diff only is only deadly in people who have other serious medical problems already. He made it sound VERY beatable. I think the main problem many people have on this site is (1) not having doctors who understand it and (2) not getting the right treatment with probiotics (since most doctors push antibiotics). The last thing I remember him saying was that many people get IBS after C-Diff, and it can be difficult to tell them apart, so not to panic and take Vanco again right away, even if the color is funny or there is diarrhea. I highly recommend this physician. It seems like he's been studying c-diff and has been involved in medication trials, etc. He talked about Synsorb, but it didn't sound much different than Questran. I remember him also saying that the ultimate solution may be a vaccine for c-diff. I suppose if it's like a measles vaccine, it would build up antibodies to the organism itself, and that would help prevent reoccurances... but that's a guess on my part. And who knows when that will happen. But all in all, I felt wonderful that somebody who really understands this disease told me it is beatable and there are options. I listed his info on the doctors section, he is in Boston. Click this link to do an automatic Google search for articles where he's referenced... <a href="http://www.google.com/search?q=lamont%2Bdifficile%2Brecurrent" target="_blank">http://www.google.com/search?q=lamont%2Bdifficile%2Brecurrent</a>

davef · Postby **davef** » Sat Mar 09, 2002 10:55 pm

Latest - Fully recovered from CDiff. Can eat anything now. Will take acidophilus and eat yogurt for the rest of my life, every day. The side effects of neurological damage from the Vanco still affect me, although it's a little better each month. Very rare apparently since doctors never heard of it (not even neuro doc). However, it was quite clear while I was on the Vanco for 5 months, my hands and feet were very cold. Now for 3-4 months, they've been in burning pain. So remember, medicines can have serious side effects. Other than that, digestive tract back to normal. Dr Lamont helped solidify what I learned, and was very helpful, so I continue to recommend him.

DaveF Case History

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