Could Intestinal Bacteria Be Causing Your Neuropathy?

[davecom]

Case study of a 26 year old Japanese woman who came down with rapidly progressing neuropathy and encephalitis from E. Coli infection:

http://jnnp.bmj.com/content/67/2/254.full

It really struck some bells with me since I match a milder case of her in some ways:

- I initially was diagnosed with colitis

- I showed elevated e. coli antibodies in blood

- I had elevated creatinine

- I had white blood cells in stool

- The course of my disease has closely followed the gastrointestinal illness - it waxes and wanes and as it does so too do my neuropathy symptoms

- I responded very very well to Rifaximin, an e. coli targeting antibiotic

- I had/have some similar symptoms, but of course her case was life threatening and I never had encephalitis

I intend to present the case study and all of my relevant lab results to my neurologist at the next appointment.

[Guest Hanice]

That sounds like you might be on to something davecom. You're doing the right thing showing your findings to your neurologist.

[Guest Alex]

Dave,

definitely worth following up with your doctor.

Good luck!

Alex

[Suthrngal]

Let us know what you find. My neuropathy and muscle fasiculations seem to be related to intestine issues as well. I never Estes positive to E. coli but it is related.

[davecom]

Suthrngal - It is very difficult to get a doctor to give you an E. Coli antibody test. I only had it because it was a part of a large panel that they ran for me to rule out IBD (Crohn's, Ulcerative Colitis). Some papers have indicated an E. Coli antibody level of 16 as indicative of Crohn's disease - mine was 16.2 (normal <10). However, I tested negative for Crohn's by biopsy, genetic testing, and all other markers... so it's more likely the E. Coli was from just what you might imagine - an actual pathogenic e. coli infection. Some strains of E. Coli occur naturally in the gastrointestinal tract and are harmless - if your immune system attacks the harmless strains then that I think is when it starts being indicative of Crohn's.

[ask2266]

Do you think you would still have an e-coli infection? Or that it triggered everything? I believe that my Sjogren's was triggered by an infection with Parvovirus. I think my immune system, in reacting to that, went rogue and autoimmune. Of course, I have also read that Sjogren's is closely linked with celiac, so I think that infection and diet contributed

Of course, I believe that ALL of my problems are related to the gut. I don't think I got a robust microflora from my mom, even though I was vaginally delivered. Then, I was on antibiotics for so much of my youth that I think I really damaged my bacterial colony.

Because of this deficient gut, I have had immune system meltdown my entire life. Shoot, I cheated on paleo last week and had wheat, and I broke out in dermatitis herpeteformis all over my body today (even though I test negative for celiac). Great, so now I'm celiac, too!

My big quest in the next 5 years is to heal my gut. I've done paleo for about 6 months, but I am thinking of trying the GAPS diet. There are several moms on the autism boards who say that the GAPS diet will heal the gut. I'm also thinking of getting a fecal transplant. Now, there's some desperation!

[davecom]

Yes when I first got sick and thought all my issues were gut related I went on the Specific Carbohydrate Diet for a month (similar to GAPS). There is real stuff there. I had an appointment with the guy who does fecal transplants here in July that took 5 months to get, but I cancelled it because I thought my issue was no longer related to that... however it's rescheduled for January so I think I will go this time. Nothing desperate about it - I've read some incredible stories and there is real science behind it. Unfortunately the government has stopped him from doing it further outside of research trials.

I do think I may have recurrent E. Coli or a colony that has never quite been eliminated. I mean I obviously have messed up gut bacteria. I see it and feel it every day since I got sick. I had a stomach like steel before a year ago (other than lactose intolerance...).

[ask2266]

Are you going to the facility in Portland, Oregon that does them? I read about that place on the scdlifestyle dot com website. That's where I would probably go, but it costs $2000-$5000. My husband is starting a business right now, so we don't have the cash to do that right now.

I have heard of people doing home made ones, but I just can't get over the ick factor of doing it myself. It's one of the last experimental treatments that I haven't tried, so knowing me, I'll get one sooner or later.

[davecom]

No, I must have miscommunicated. I am not having one done - although I would be open to it. I simply had an appointment with a doctor here on the east coast who is known for doing them. My personal opinion is that it's a pretty sound idea if you do it under medical supervision with proper screening. But of course it's a bit of hocus pocus like most new treatments.

[davecom]

Guys there is hope this procedure will be commonly available some day soon if the drug companies don't find a way to shut it down:

http://gizmodo.com/you-can-get-a-poop-transplant-in-a-pill-now-1440813186

Sorry, I couldn't find a the more reputable AP article that I read... but this was covered in all major press outlets so just do a search if you want something better than Gizmodo!