CDiff, Cyclospora, sinusitis, oh my!

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mandy988
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Joined: Tue Jul 10, 2018 8:22 pm

CDiff, Cyclospora, sinusitis, oh my!

Postby mandy988 » Tue Jul 10, 2018 9:30 pm

Firstly, thank you to the organizers of and contributors to this group, it has been insanely helpful to me. Here's my story:

Short story: I am a 29 y.o. female, diagnosed with both CDiff and cyclospora simultaneously at 28 y.o. After 10 days of Flagyl followed by 10 days of Alinia I was cleared of both infections, but have been dealing with residual IBS-type issues ever since. I'm now fighting a month-long sinus infection with low grade fever and grappling with whether to take antibiotics or not, hence my motivation to join this group (lots of good AB info here, thanks!).

Long story: For most of my 20's, I've had IBS-type symptoms. I'd been to doctors about it but they never seemed to know what to do or take it seriously, so I got disheartened and gave up searching and just accepted it and stocked up on Pepto Bismol for flareups. From October 2016-May 2017 I had a big push for a project I'd been working on at my place of work (NASA JPL), and stress definitely aggravated my stomach issues. Not only was I having diarrhea off and on but persistently had heartburn-type pain. As a result, my doctor put me on Zantac daily starting in May 2017. In late June 2017, my husband and I visited Mexico. After we returned we both had awful diarrhea for a week, up to 20x a day. A BRAT diet helped slow it down to 5-6 times a day, but it was still pretty awful. We both went to the doctor after a week and they gave us Cipro. My husband started to feel better, but I did not. After about a week of on and off symptoms I went to a bachelorette party and thought I could join in on a wine tour and have a few glasses of wine. The next day, I was back to 20x a day diarrhea. I went to the doctor and they did a "full panel" parasite test, that came back fully clear a week later. At this point I was on a primarily BRAT diet still, with relatively normal BM's 3-4 times a day. However the following week I started having diarrhea again, but this time it was very yellow. I looked at my parasite results again and noticed a disclaimer that the panel did not test for Cdiff, cryptosporidium, or cyclospora. I called my doctor with an update on my symptoms and he decided to test for Cdiff, but not the other 2. Not fully trusting this decision I called my friend who is a doctor and he called a separate doctor who ended up ordering a more complete panel including testing for all 3. The Cdiff-only test came back positive for Cdiff. My doctor immediately took me off the Zantac and put me on Flagyl. The next day the full panel came back positive for both Cdiff and cyclospora. Knowing that bactrim, a sulfa-based drug (to which I am allergic) and a propagator of Cdiff, was the primary treatment for cyclospora, I was pretty terrified about my prognosis. Determined to get better, though, at the recommendation of a friend whose father had had Cdiff, I started drinking lactose-free kefir by the gallon, taking S boullardi (found that recommendation here), and sticking to a very mild diet with lots of avocado to help me put weight back on. 10 days of Flagyl later I still had 4-6 BM's a day, albeit mostly solid, but still too frequent. My doctor did some research and found Alinia to treat the Cyclospora *and* the Cdiff! It was $700 even after insurance but I would have paid $7000 - I had now been sick for 2 months and lost 20 lbs (I am 5'5 and went from 130lb to 110, a very low weight for me). In fact, at this point I wanted an FMT but my condition was not severe enough. After the Alinia, I finally started to feel better, and did tests up to a month afterwards that came back negative for both Cdiff and cyclospora. In the past 11 months, I've had my ups and downs, but have never had symptoms bad enough to prompt another test for Cdiff. However after all this mess my doctors are finally testing me for celiac (that came back negative), ulcerative colitis, and Chron's (both TBD, but given the symptoms and family history I'm betting on the latter). Next will likely be a colonoscopy.

The silver lining of all this to me is if I do have an underlying illness, at least this is motivating me to identify and treat it now! But first, I have to deal with this sinus infection I have. I used to get these all the time (2x a year) but was clear for 4 years before I had Cdiff. Since Cdiff I've had 2! The first I got over without antibiotics using a grapefruit seed extract nasal spray, but this one is lingering. My doctor prescribed doxycyline, but I have yet to take it, especially since I had a flare up of D recently. Will provide an update if I do end up taking it!

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