BradleyO's Case History

Guest · Postby **Guest** » Sat Aug 07, 2004 6:50 pm

Here is My Case History: How It All Started: I got sick with c.diff on April 2nd. I started having diarrhea less than 24 hours after taking Clindamycin prescribed by a dentist to “prevent” an infection after having a tooth removed. At the time, I was not aware of the dangers of taking antibiotics. After having diarrhea for six days, I began doing some research online, and discovered information on “antibiotic associated diarrhea”. I stopped taking the Clindamycin, but the diarrhea continued… after the tenth day, I went to the emergency room. Emergency Room Visit 1: The attending doctor diagnosed me with having a c.diff infection and gave me Flagyl for 7 days. Within 24 hours the diarrhea stopped as did the cramping. I took the Flagyl for 7 days, but three days after I was off the medication, the cramping and diarrhea returned. Emergency Room Visit 2: I returned to the ER, and got the same doctor and he told me that my c.diff test came back negative. He said that I had either Irritable Bowel or Colitis- but NOT c.diff. I told him about the research I had done online, and how I read that a person can test negative several times, even though they have a c.diff infection. He told me, quite condescendingly “stop reading about things online, you do not have c.diff, and if you did, we treated you for it”. He did, however, order another c.diff test and gave me 14 days of Flagyl. Once again, within 24 hours the cramping and diarrhea stopped. I contacted the ER a few days later, and learned that the second c.diff test came back negative. During the 14 days of Flagyl, I began taking Reuteri and Culturelle. Unfortunately, once again, three days after completion of Flagyl, the cramping returned. This time I was having loose stool, not watery diarrhea, but I was passing a lot of mucus. After a few days, I began passing some blood along with the mucus. Emergency Room Visit 3: This time I got a different ER doctor. I explained what the previous doctor told me about not having c.diff. The new doctor told me “I disagree, I think you are infected with c.diff”. He ran all sorts of tests, and admitted me to the hospital because of having been battling this for so long. The next day the Gastroenteritis doctor came and told me that I tested positive for c.diff, but all the other tests came back ok; he then put me on Flagyl and Vanco. I told him that because I didn’t have medical insurance, I could not afford to take Vanco once I left the hospital; he said he would use it as long as I was in the hospital. Three days later they discharged me, with a 21 day prescription of Flagyl. During this time, I realized that my only hope was to do the fecal infusions. I felt that all of my beneficial bacteria had been wiped out, and I couldn’t replace them by taking probiotics that don’t adhere to the intestinal wall. The infusions are the only real way of putting billions of growing/colonizing human bacteria into your system. My father agreed to be a donor, but since neither of us have health insurance or lots of money, we weren’t able to perform the donor screening. My father is old, but he is the healthiest person that I know, so I decided that the benefits far outweighed the associated risks. Fecal Infusion Round 1: After 18 days of Flagyl, I stopped taking the medication, and we began the infusions. We continued for 10 days, but I didn’t notice the “immediate” benefits that so many others have had. I still was experiencing stomach pain, gurgling, and gas- but the loose stool and mucus didn’t return. I was now taking 3 @ Primal Defense, 2 @ Reuteri, 2 @ Bifudus, and 1 @ Culturelle each day. I continued to have occasional stomach pain, gurgling and gas… but I figured it was probably just post-infectious irritable bowel. Apparently it takes about 90 days for the colon to heal from colitis, and around six months for your intestines to be fully regrown and matured. After three weeks, I ran out of Primal Defense and Culturelle and didn’t purchase anymore. I felt I was pretty much “cured” so I didn’t need them anymore. Relapse: Around five weeks, one morning I experienced loose stool that was green and pretty foul-smelling. The next day I started feeling fluish, and this continued the next couple of days. During this time, my stomach began cramping again. Then came the mucus, the a day later came blood with the mucus. I didn’t think it was possible to relapse after doing the infusions, but apparently it is not a “cure” afterall. When I was in the hospital, I had two doctors… the Gastro doctor gave me a prescript for 21 days of Flagyl and the ward doctor gave me a prescript for 14 days of Flagyl. I had gotten the 21 day filled, but not the 14 day. So I now went and got that 14 day prescript filled and began taking it and once again the cramping and mucus stopped. Reason for Relapse?: I think I may have helped cause the relapse for three reasons; 1) After three weeks and feeling like I was cured, I began eating tons of sugary stuff- cookies, ice cream, cakes, etc. Sugar feeds the bad bacteria! 2) I was having some gastric reflux, so I began taking a Pepcid AC every day. I later learned from “The Pill Book” that Pepcid AC alters the stomach acid so that it dissolves enteric-coated tablets and capsules. The Reuteri and Bifudus that I was taking are enteric coated to survive the stomach and dissolve in the intestines… but due to the Pepcid AC, were pretty much destroyed in the stomach before reaching the intestines. 3) I stopped taking Primal Defense and Culturelle, and with the Pepcid AC destroying the other probiotics, I lost all of the additional beneficial bacteria that was helping to starve out the hatching c.diff spores. Fecal Infusion Round 2: After seven days into taking Flagyl, I began experiencing some serious side effects. I was having tingling and numbness in my hands, arms, legs and feet, I was having problems concentrating, I felt extremely depressed and was having muscle spasms. I was afraid that if I continued on Flagyl, it may cause permanent damage. Thankfully my dad agreed to do the infusions again, so I stopped the Flagyl, and the next day started the fecal infusions again. This time we continued for 12 days, and ended on August 1st. Since the infusions ended, I’ll have one good day, then one bad day. I still have occasional stomach pain, gurgling, and gas- much like I experienced before during and after the infusions. Post-infectious IBS most likely. But I can tolerate this, since the pain is nothing like what I experienced when I was having a full-blown c.diff infection. Treatment Options: During the last round of infusions, I continued taking extra doses of Reuteri and Primadophilus but added Culturelle and Primal Defense back into the mix. Currently each day I take- 2 @ Reuteri, 4 @ Primadophilus, 1 @ Culturelle, and 6 to 12 @ Primal Defense. I just ordered 14 days worth of HMF Replete, and will order HMF Forte to take once the Replete is done. I plan to take 4 @ HMF Forte, 6 @ Primal Defense, and 1 @ Reuteri for the next two months. I will be phasing out Primadophilus and Culturelle when I run out- since the Forte will replace them. After a couple months, I will reduce the Forte and Primal Defense, and phase out the Reuteri. I plan to continue taking Primal Defense for several months since it seems to work well for me. I am hopeful that I can overcome this infection. I just have to make sure that I don’t rush things, that I keep in mind that it will take months for my body to be able to defend itself, and that I must continue taking probiotics for months or years. I tend to be rather impatient, and I have to keep all of this in mind so that I don’t risk another relapse. I will keep this site posted as to my progress. Thanks again to everyone for your support.

Guest · Postby **Guest** » Mon Aug 23, 2004 4:54 pm

Relapse AGAIN! Just two days away from being five weeks off Flagyl, and WHAMO... it's back! Yesterday afternoon I started to have that rundown feeling, then a couple hours later the cramping started. This morning I noticed black in with my stool (although stool wasn't loose at all), then later I passed a blob of mucus with quite a bit of red blood. Normally it takes a few days after the cramping starts for me to pass blood, so I'm a bit concerned... and I never had the black in the stool before either. So I went to the ER, and well, I could not believe how horribly I was treated at the ER, I expected more from this particular hospital. Basically, the ER doctor looked like he was about two days out of medical school. I gave him a note that I had printed, explaining what I've gone through since April... including about the fecal infusions. He was pretty much speechless. So then I said "there has got to be a reason WHY I cannot build an adequate supply of good bacteria, considering how many different types I'm taking." I continued "does low body temperature have any effect on the growth of intestinal bacteria? Because I constantly have a low body temperature, and I'm just wondering if that might be the problem, since I know low body temp can cause many other issues." His response... "um.. uh... um... your case goes way beyond an emergency room visit, you need to consult with a gastro specialist". So basically, I'm screwed! I have an appointment tomorrow with the Gastro doctor's PA, which will basically be a waste of my time, for them to give me a prescription for a medication that I cannot afford. I will try to get them to give me Flagyl again "just in case" I can't get the Vanco filled. There are two other options left open to me- either I take the Flagyl that I have left (about seven days) and try the infusions again for another 10 days, this time doing one per week after that for about eight weeks (so I get past this stupid five week barrier at least). The final option, is to let the bacteria destroy my colon and accept dying from it. Although, I would kill myself before I would deal with the pain of going through that process. So I'm not exactly in a good mood because I don't know what is going to happen. I'm sitting here typing this while my stomach feels like it's being eaten away from the inside out. I have to do research on low body temperature and take with me tomorrow- maybe they can give me some thyroid medication and see if that adjusts my body temperature to normal. Anyway, I wish I had better news, but I don't. I don't know what dad will feel about the infusions again... I know last time I asked, when I thought I was relapsing, he said "apparently it's not working, so you need to go to the hospital". Well, it seems to work for five weeks at least... but if we did an infusion every week after the initial ten days, then maybe it would last beyond five weeks. I really don't understand because I've been taking so many probiotics as well. Last time I felt the relapse was because I reduced the amount of probiotics... this time, there is no reason. For some reason my body just isn't growing the good bacteria like it should. I don't know if body temperature would affect this, but you just never know. I hope next time I have better news to report... as you all know, this is extremely frustrating to deal with, especially when you don't have health insurance to cover the medication that you need. :-(

Guest · Postby **Guest** » Sun Sep 26, 2004 9:10 pm

9/26/04 It seems the doctor was right afterall. I was not having a relapse, as the day I went to see the Gastro doctor, I started feeling a bit better. As the week progressed, I felt even better. Right now it's almost been 10 weeks since I last was on the medication. However, I am now suffering from IBS, which causes good days and bad days. I'm hoping as my system heals, that it won't be as bad as it is now. I definitely know that the IBS attacks are tied to my emotions, as this week has been very emotionally stressing, and my stomach has been miserable. I am hoping that I won't have to worry about c.diff anymore- but each time I have diarrhea or my stomach reacts, I fear the worst. I hope that this paranoia goes away in time too.

BradleyO's Case History

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