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Living with Polyneuropathy CIDP, GBS, & CMT

Autoimmune Disease + Microbiome


#1

I’ve been searching through the archives and I don’t see any discussions of the role our microbiome plays in the autoimmune disease we all share. (For those who are not familiar with the term, microbiome refers to the mix of bacteria in our gut that is largely responsible for our digestive health, and possibly primary influence over the immune system – for both good and bad).

The microbiome is a subject I have found fascinating for a few years now. My fascination started with a fun fact I read in a New York Times article: that 90% of the cells in our bodies are not human! Yes, you are more bacteria than you are you, to the tune of 100 trillion microbes vs. 10 trillion human cells. (Since the microbes are so much smaller than human cells, they comprise only a few pounds out of your total body weight).

The latest book I read on this subject is called “Brain Maker,” by Dr. David Perlmutter. After going into great detail about the science, he discusses dietary changes that can supercharge your immune system. Beyond diet, he discusses the remarkable results people with debilitating nervous disorders have achieved with FMT (Fecal Microbiota Transplantation). This process can “reset” a sick microbiome by introducing “good” bacteria from a healthy donor.

In addition to having CIDP, I have had digestive issues for years and I can’t help but think the two are related. My medical group is at the UCLA main campus and these are very fine physicians, but my neurologist doesn’t seem to have any interest in talking to my gastroenterologist about my condition – and vice versa. Rather than treating a system, they seem only directed toward their specialty.

I’d be very interested in hearing from other members of this forum about any of the above – particularly, if you have any gastroenterology issues that could conceivably be associated with your autoimmune disease.

Thanks!


#2

Interesting. I am going to look into this. I am happy that IVIG is keeping my symptoms under control, but I am looking for supplementary therapies and to continously improve my dietary practices. I went vegetarian 5 years ago, but didn't do it right- too much carbs, cheese and processed sugars. I am been eating more leafy greens and anti-inflammatory foods and went pesce-vegetarian these days, but have a ways to go in cutting out carbs. I took oregano (anti-fungal) for a few weeks with pro-biotics- and have continued the latter. I try to drink water/lemon in the AM when I remember and do a lot with tumeric (tumeric tea) & now green tea. I think it helps the symptoms at times.

I read a few summary articles referencing the USC study published in Stem Cell journal.( It seems to be vetted by others in the scientific community). Not sure if this compliments the concept of Microbiome health. The study reviews effects of a prolonged fast (3-e.g. 4 days) and the connection with stem cell regeneration of new immune cells.. clearing out of old, damaged cells. I am inquiring with my neurologist and MD as I know there are right ways and wrong ways of fasting, but also outside of the general risk, if there is an outlier for us with CIDP (muscle wasting or other).

As for your inquiry on gastro-enterology issues-

Prior to CIDP diagnosis, I had a weakened immune system for 2 years. The year prior, I was fatigued all the time. We discovered 2 things from trying to diagnose the issue: iron deficiency (diet) and a mild esophagitis (gastro-enterologist was ruling out celiacs and found that). No colon issue except a removed polyp. I had to follow more of a GERD diet and eat more fiber, put on meds for 3-4 months for the esophagitis. I haven't been back to gastroenterology though. This was right before CIDP, which happened 2 weeks after a first time flu shot. I think my body was just at its breaking point.

Thanks for posting.