Robin S./New Case History 8/12/03

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By Robin S. (68.170.154.174 - 68.170.154.174) on Tuesday, August 12, 2003 - 01:11 am: <BR> <BR> <BR>Robin S./Case History <BR> <BR>Greetings everyone. I am so thankful to have found this site. I'll try to be brief (though I'm brimming with information that will finally reach the ears of people who understand the problem). To be honest, when I read the case histories of people who have suffered with C. Dif for years, it is so discouraging. However, everyone is engaged in a brave struggle, and I know that many of you have seen the victorious side of the challenge. I know it's important to try and stay strong and optimistic, and to persistently seek information....but as you know, it can be rough. <BR> <BR>Well, my problem began on June 26, when I started taking Cipro for a minor problem, the undrlying cause of which hadn't even been diagnosed. Actually, I had been experiencing ongoing constipation problems that were improving, but a doctor hypothesized a bit of diverticulitis (totally unconfirmed) and put me on a strong course of Cipro (along with Flagyl). As I look back, it was so insane (and by the way, I had a gut feeling -- no pun intended -- that I should not take either drug, but after waiting for about 10 days, I started the antibiotics). By day 2, I was having loose bowel movements and dizziness, and by day four, I was having diarrhea. I stopped the drugs, but the diarrhea rapidly became very severe, with copious quantities of mucus (mixed with blood); that characteristic orange/fuzzy appearance; the unpleasant, distinctive C. Dif odor; low-grade fever; rapid weight loss; and extreme debilitation. Despite everything that was going on, my doctor ignored me -- didn't think that Cipro had precipitated a problem, and basically suggested nothing in response to my symptoms (it was easy for him to ignore me, because despite my phone calls, he's 90 minutes away from where I currently live). His nurse practitioner thought I had C. Dif, and told me to start using the remaining Flagyl (I had 4 days worth of Flagyl), but the doc didn't agree, and refused to prescribe what would have constituted a full course of treatment (and by the way, he told me a full course of Flagyl for C. Dif is 5 days!). <BR> <BR>Four days on the Flagyl enabled me to improve, but of course, the symptoms came back with a vengeance after three days off the Flagyl. After that, I went through an 11-day period of extreme illness, with no return call from the doctor. His nurse practitioner finally called, and ordered a C. Dif test (along with O&P and stool cultures). The test (only sensitive to Toxin A) came out negative for the toxin but positive for the C. Dif antigen, and I was put on a 10-day course of Flagyl (by then, I was basically bedridden...terribly sick). <BR> <BR>Two weeks of rest, combined with the Flagyl, led to significant improvement, though I was still very debilitated. Meanwhile, I had already been out of work for 2 consecutive weeks, and for the previous 3 weeks, had been in and out of work. Five days off the Flagyl, and I relapsed once again (that was 1.5 weeks ago). I have a different doctor, who now has me on a 3-4 week course of Flagyl, and also wants me to use Cholestyramine. I've also been taking Lactobacillus GG and Saccharomyces Boulardii, but neither seems to be a magic bullet. The diarrhea and fevers are gone (for now), but I'm quite fatigued, and for about 1.5 weeks, have been having unexplained heart palpitations and chest discomfort (does anyone think this might be C. Dif/Flagyl related????? I'm worried). <BR> <BR>I again tested positive for C. Dif antigen and negative for Toxin A (before starting this recent course of Flagyl), but the lab around here doesn't test for Toxin B (seems that a lot of labs don't). I am trying to stay strong, but really have down days. I could easily lose my job; I don't have adequate insurance coverage; I live alone, and in a town where I don't have much of a support network; and it's very difficult to find educated, innovative, empathetic physicians. I have been doing a lot of reading, and understand that the real problem with C. Dif (in recurrent cases) is the prevalence of spores...and that even long courses of antibiotics don't impact the spores. I'd like to jump to Vancomycin with pulsing, and if that doesn't work, to fecal infusion. Any advice? By the way, I'm also scheduled for a colonoscopy on August 25 (not sure if this is a good idea or not). <BR> <BR>Another thing that frustrates me is that because Cipro isn't at the top of the list of drugs that can trigger C. Dif, some physicians don't take the situation seriously (whereas I've already learned, via articles from John Hopkins and Harvard/Mass. General -- thanks to this site -- that Cipro nonetheless is in the "moderately likely" category of drugs that can trigger C. Dif, and that any antibiotic can precipitate infection). Well, I guess I've written too much already, but thanks for listening.

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A quick update....1/1/04 <BR> <BR>Hi there. I thought I'd offer a quick update. On 8/29/03, I had a colonoscopy (after the 3 weeks on Flagyl)....revealed what looked like a resolving infection (presumably from the C. Dif). After that, I started pusling the Flagyl, and ended up pulsing for 3 months. I also took various probiotics during that period (which I'm still taking) -- Reuteri, Lactobacillus GG, and S. Boulardi. I finished pulsing on the Friday before Thanksgiving....and am keeping my fingers crossed. Thusfar, I've been doing pretty well. <BR> <BR>I've also filed a complaint with the CT Medical Practice Board against the original gastro-enterolotist. We'll see how that goes. <BR> <BR>Sorry I haven't been a regular on the site anymore. I do want to say I'm so thankful that the site is here, and it has helped me tremendously through this horrible period. Good luck to all of us! /robin