OpenBiome Temporary success with OpenBiome in 2015 for post-Lyme and neuropsychiatric symptoms

SFBayFMT5

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I took antibiotics intermittently in 2002 and continuously 2003 through 2007 for Lyme disease, which had been diagnosed in 2002 by my pediatrician using the standard ELISA/western blot protocol. I had significant peripheral neuropathy, mainly in the form of non-painful numbness, that was not alleviated by this treatment. If anyone wants a list of the all the antibiotics I was rotated on (it's very long), just ask.

In addition, during antibiotic treatment I developed constant diarrhea that was not alleviated by a large variety of probiotics, both in pill and yogurt form. I was diagnosed with SIBO by a gastroenterologist and treated with two courses of rifaximin without noticeable improvement.

Also, I developed very significant food sensitivities. I had always had a dairy allergy since birth, but at this point I would get symptoms just from a strong odor of cheese/dairy and also from almost anything eaten in a restaurant, regardless of if it contained dairy. The symptoms of a reaction were immediate sore throat, followed by tingling peripheral neuropathy within several hours, followed by 2-3 days of mood swings.

I also slowly developed depression, I can't pinpoint exactly when the onset was because it slowly crept in and was difficult to distinguish from poor life outlook due to chronic illness itself.

In 2013 I developed sudden onset severe insomnia and anxiety following a life stressor. As post-Lyme symptoms got worse, I returned to a Lyme practice and was diagnosed with and treated for Bartonella using rifampin, trimethoprim/sulfamethoxazole (TMP-SMZ), and for part of the time azithromycin (to suppress any remaining Lyme). The total length of antibiotic treatment was approximately 7 months. Over this time, the insomnia slowly improved but I was still unable to have a normal life. Anxiety was almost constant.

Within two weeks of discontinuing the rifampin/TMP-SMZ combo, I developed severe watery diarrhea which was diagnosed as Clostridium difficile and was treated with a course of vancomycin. Within two weeks of finishing this course, diarrhea relapsed and was treated using fidaxomicin (Dificid). After this, diarrhea resolved.

In late 2014, 5-6 months after the second recurrence of watery diarrhea, I re-visited my gastroenterologist. At this time any diarrhea was mild, similar to how it was immediately after Lyme treatment. In other words, there were no obvious signs of C. diff. However, a test from my gastroenterologist detected C. diff toxin. Thus, being a third recurrence, I was assigned to receive FMT.

My diet pre-FMT was balanced except for avoidance of dairy (obviously) and severe limitation of vegetables (no cruciferous vegetables, no beans, etc.). The only vegetables I could eat at this point without getting neurological symptoms were zucchini/squash and occasionally asparagus. I also did not tolerate any spices except for salt. Meat-wise I could eat beef, chicken, and seafood, and as starches I tolerated rice and potatoes, and some pasta although I was less tolerant of that. Alcohol was also a trigger, causing anxiety and agitation.

The FMT itself was performed in March 2015 as an outpatient procedure in a hospital by my gastroenterologist via upper endoscopy, using material sourced from OpenBiome.

Immediately after awakening from the endoscopy,
my anxiety was already back to pre-2013 levels. Even the very first bowel movement was toward the constipated end of normal, i.e. no trace of the former diarrhea remained. While much peripheral numbness remained, there was much less tingling, allowing me to clearly pinpoint meals that triggered tingling for the first time in years. Each flare was brief now, rather than a continuous series of them that blended into one another. About two weeks into this improvement, I suspected that gluten may have been a trigger, so I went on a gluten free diet.

I also had more energy and reduced depression. For the first time since before 2008ish, I could be in a positive mood without being hyperactive. While eating problematic foods temporarily brought some negative moods back, these were small "blips" against a very positive background. Insomnia was much improved as well.

Things remained like this for approximately 1 month post-FMT. Then, over the following week, further dramatic change happened. Almost the entirety of the remaining depression disappeared, back to pre-2002 levels. I was able to tolerate a few more foods as well as moderate alcoholic beverages. I felt literally like a different person than pre-FMT, like I had emerged from a dark tunnel. Diarrhea was still totally gone. The only thing that remained, but even that was slowly improving, was the peripheral neuropathy.

The following weekend, I had sudden brief diarrhea again after consuming a small amount of cannabis. Approximately 5 days after this, diarrhea returned full force (not watery C. diff levels, I'm talking 2007-2013 levels). Along with this, the neuropsychiatric benefits immediately started to fade, and by 3 months in (or 4 months post-FMT) most of the benefit had been lost.

Partway through this decline, I realized that gluten-free foods were actually aggravating things due to the higher sugar content. Therefore I switched back to gluten. This change in and of itself neither seemed to slow NOR accelerate the decline.


In March 2016, due to gut problems being back, I was re-diagnosed with SIBO. This time, a course of rifaximin temporarily restored a significant amount of the post-FMT benefit, but only for less than a week. Extending treatment provided no benefit. I suspected that now that I had more beneficial microbes to replace those killed by the rifaximin early in the course, I actually benefited, but additional rifaximin killed those too and so reversed it.


So in summary--my gut microbiome was wiped out by lots of antibiotics over many years. This caused gut problems and, along with the Lyme that started this whole thing, peripheral neuropathy and neuropsychiatric issues. Eventually, too many antibiotics caused C. diff, which resulted in me receiving a FMT from OpenBiome. Many changes were manifest the same day as the FMT, and still more dramatic ones occurred about 5 weeks out. Then shortly thereafter there was a regression, I suspect triggered by a small amount of cannabis use over just one weekend. I have not been able to get another FMT since (hence me being on this board).
 
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