Lynn's Case History

[lynnjr]

I am a 48-year-old woman who went in for a Total Knee Replacement on Feb. 1. I was given a 24-hour antibiotic drip (Ancef). During the rest of that month, I felt nauseous and had no appetite but figured it was because of the post-surgical pain, the pain killers I was taking, and the pills I took to sleep through the pain.

On March 2 I developed the first signs of diarrhea. I called my surgeon's office to ask if anything that had happened from surgery or the medication I was taking could cause this. They said no and maybe I just had a flu. I had no energy and spent most of my days in bed feeling lousy.

On March 6 I developed a UTI and was given a 3-day dose of CIPRO. It cleared it up for a couple of days but then on March 11 I was tested for the UTI and still had bacteria in my urinary tract so I was put on a 7-day dose of Avelox. I mistakenly thought my loose stools and complete weakness were in part due to the UTI. Unfortunately I didn't tell my doctor about those symptoms. Never again will I withhold that kind of info!

By March 17 I awoke with severe diarrhea, vomiting and my fever suddenly rose from about 97.7 to 100.7 in about an hour. I called my doctor and he sent me to the ER and followed up with me. They took a stool sample and did blood tests and my WBC was about 17. I was put on a combination of Flagyl and CIPRO. By the next day my diarrhea had subsided and my WBC was back down to 10. The meds seemed to be working. The guess at the time was that I had some sort of gastric infection.

10 days after I went off the flagyl, I relapsed. At that point the stool sample was available (they take WAY too long to get results for!) from the hospital visit and it showed C Diff. I was thrilled to at least know what it was. And he's a GI so he was familiar with it. Of course now I know he'd never seen a multiple relapse case so he was completely confident that my troubles would soon be over.

I was put back on the Flagyl alone this time (since it was clear CIPRO wasn't a good idea!). Within a day and a half I had developed peripheral neuropathy. He took me right off of it and switched me to vanco. (Thank goodness - I HATED the flagyl). Vanco is expensive but it definitely worked better for me. I still ended up in the hospital again for 2 days this time since I was so dehydrated. I felt so awful at this point I couldn't imagine ever feeling better.

I was on the vanco for 28 days and by the end of the dose I felt great and my energy returned to almost normal. Unfortunately I got a small infection in my toe from an ingrown toenail. This on the same leg as my titanium knee. Since the whole total knee replacement can be undone by an infection (and would have to be REDONE), my 3 docs (surgeon, gastro and podiatrist) all thought I needed to err in the direction of taking an antibiotic and having a procedure to clean up the toe. I agreed given the potential implcations of getting the infection in my knee. Plus I was feeling so good at this point that I was confident the C diff was behind me. I was given two doses of Clindamycin. (BAD choice of antibiotic I now know from this list).

17 days after the clindamycin and 30 days after being off the vanco I started having loose stool. Since I'd had a couple of days along the way I'd had some diarrhea for a day or a day and a half and it went away, I waited several days. I felt so great I didn't believe the big D was back. I was wrong. I waited too long before calling my doc and wound up back in the hospital. AGAIN.

I took the vanco and started taking Florastor 3x a day this time. For some reason my doc wanted to try a shorter dose of only 12 days. Well, 6 days later, on June 12, I relapsed. As soon as I saw the mucousy diarrhea I called my doc. This time I got on the meds within 24 hours and
only missed 1 day of work.

While my doc hasn't had experience with cases like mine, he has been willing to learn with me and has done research on his own and been open to what I've learned on the list. And he's extremely compassionate - a trait I've really valued through these episodes! So together we talked through the pulsing regime and I've been trying that now.

I'm on a pulsing regime of (three 250 mg/day vanco when on)
21 day initial course followed by cycles of:
1 3-day off/3 day on (this felt too hard to so I adjusted it to . . .
3 2 day off/3 day on
4 3 day off/2 day on
3 4 day off/1 day on

I'm on my last of the three 2 day off/3 day on cycles. I've been following some of the dietary suggestions on this list which have helped, I'm also eating 2 yogurts every day and taking 1 PB8 a day in addition to the Florastor. So far I feel okay most days but do have certain days (like today) where my stomach hurts more than it has been and is gurgling a lot. It's a bit unnerving. But I'm hopeful.

I'll keep you all posted as I go through this.

[lynnjr]

I finished the pulsing regime and am now up to 38 days past my last vancomycin. Right today I feel great. All through the pulsing regime and for the first 19 days or so after I had a lot of nausea. In the interim I had read "Bacteria for Breakfast" (great read!!!) After a particularly bad bout of nausea, I decided to order VSL #3 online. It's VERY expensive so I ordered just 30 days worth.

Within a few days I noticed a difference. I am now 20 days into taking the VSL instead of the combo of probiotics I had been taking and I am amazed how much more solid my whole gastro-intestinal system is. I still have occasional nausea but nothing like I was having before.

It may not work for everyone, but it has made a tremendous difference for me. I'm planning on staying on it for at least 3 or 4 months.

[lynnjr]

Hi all -

I wanted to update you all and let you know that it's now a full 6 months since my last relapse of c diff (which was June 12). I still feel terrific. And I'm staying away from antibiotics at all costs. (I had a series of UTI's but stuck with treating them with cranberry juice, garlic pills, D-mannis, etc. It took longer but finally seems to have worked).

Starting in early September I took the VSL twice a day for about 7 weeks (until I hit what I'd heard was the magical 70-day mark), then I went down to once a day. After another few weeks I dropped to about every other day for awhile and at this point almost never take it. I do still eat yogurt most days since I don't want to take too many chances and my system is doing well while still taking it.

The single biggest difference for me in the way I felt definitely happened after I started on the VSL. I went from feeling like I was slowly getting better to seeing a rapid improvement in the health of my GI tract.

You guys are terrific! I don't think I would have made it without this list. It is truly a godsend! I learned *so* much from everyone here. And mostly it made it so I didn't feel alone. Thanks again!