Gut-Brain Epilepsy Project - Important Info

Bernard

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Over the course of the last year or so, we have had several threads here on CWE discussing the gut-brain, microbiota and the potential for controlling seizures with dietary changes targeting same.

While there is a lack of conclusive research/science on the subject, there appears to be enough research/science to suggest a possibility and that has always been a realm worth exploring for those with the resources and inclination.

Towards that end, I have agreed to allow Keith, our own resident gut-brain microbiota enthusiast, an opportunity to conduct a non-scientific experiment here on CWE with anyone who wants to participate.

What is the Gut-Brain Epilepsy Project?

The Gut-Brain Epilepsy Project is a collaboration between CWE members to explore the possibility of achieving better seizure control by altering the microbiota in the gut and thus, affecting the "gut-brain".

How does one participate in the project?

Anyone that wants to participate can. Essentially, the process is to measure your microbiota, identify deficiencies and alter your diet in an attempt to alter the microbiota in the desired manner. The process necessarily repeats as often as you like.

That sounds easy! aka The Devil is in the Details

How does one measure their microbiota? There is a company called uBiome that markets kits for collecting stool samples. You have to buy the kit, collect your own stool sample and send it to them for analysis. They send you back a report with your microbiome results.

How do CWE members interpret the microbiome results? Well, this is where we begin the journey in uncharted waters. Keith is offering to help CWE members interpret their results and figure out a (dietary) plan to adjust the microbiota as desired. You post an image (screen shot / photo / whatever - I'm not sure how the results are delivered to you) to your CWE album or as an attachment to a post in this forum room and then discuss it with Keith and anyone else interested in the project.

How many times does the process need to be repeated? I don't know! As many times as you want I suppose.

How often does the process need to be repeated? I don't know! We're in uncharted waters here.

Important Considerations

  • Keith is not a doctor nor a dietician. He is passionate about studying the microbiome and the potential it might have for controlling seizures. He is a voracious reader of research related to the subject, but he is not a credentialed professional in this realm (AFAIK). If you participate in the project, you are collaborating with "a guy from the internets".
  • Keith will earn a small commission from every uBiome kit you buy if you use his discount code. Keith can offer CWE members a discount code that will allow them to buy the uBiome testing kits at reduced prices. He will earn a small commission from the sale. Full disclosure. CWE is not earning any commission from the sale.

So, why is CWE hosting this project?

This project is not scientifically designed research. It's not going to appear in any scientific journals or directly lead to new dietary protocols for seizure control. At best, with enough participants and decent end results, it might spark some interest in more rigorous research. But whether that goal is successful or not, it's possible that some CWE members might improve their condition and we all might learn something.

Many years ago, I built a chart of alternative epilepsy treatments for this website and I tried to evaluate treatment options in terms of their potential cost, benefit and risk/harm. I do believe there are things which every epilepsy patient can experiment with on their own with minimal risk. Such simple things as establishing a rigorous sleep time routine and changes to their diet. This project falls in that category in my opinion, but, as always, you should discuss your care with your doctor. I know my wife's current neurologist couldn't care less what she is eating right now. Maybe yours is different.

And with that all said, I will yield the floor to Keith to provide more details on the uBiome kits and the process for participation.
 

Keith

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Wow, first I want acknowledge how honored I feel to be part of this community the past five or six years now. Before then I was still reading the forum, inspired and encouraged by Robin's posts as I was seeking out information about the gut-brain. It seemed obvious to me that my dog's seizure disorder was coming from her gut, but the doctors were offering treatment only from the neck up.

The stress of being a caretaker is enough to have inspired my research about gut origin of seizure and related maladies. There are so many patient and smart, creative people in this forum, my heart goes out to everyone here. And if you're new to this forum, I welcome you to a great community. It's been an important platform for me.

I recently started this organization called The Gut Club with hope to make my passion a profession. Here's where you can find links to order stool testing kits which will cost about $70 using the discount code.
http://thegutclub.org/ubiome-stool-testing/

For the Gut-Brain Epilepsy Project, please use the following 20% discount code: GUTBRAINSTUDY

When you receive your results from uBiome you will be able to generate a report to post here on the forum for discussion. uBiome has a new platform for results I'm just getting familiar with, but I'm sure it won't be difficult to generate a .pdf or .jpg to share results. I'll be able to guide you through that process.

So, let's work together and see if we can reveal some patterns about gut dysbiosis (microbial imbalance) in some forms of epilepsy. For example, I've seen results now of four children with Dravet syndrome all with very similar results: high Clostridia and low Lactobacillus. In my view, that's a recipe for seizure for several reasons.

Thank you for considering this project. Hopefully, we'll inspire controlled scientific research projects to further our understanding about gut-brain connection and seizure disorders.

Keith
 
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Bernard

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Please let me know the format details for the uBiome reports. If the report can be generated/captured in a image (.jpg, .png, .gif, etc.), let me know what the dimensions of the images are and I'll adjust the forum settings if necessary to make it as easy as possible to post them here.
 

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Nakamova

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According to the study, "FMT showed positive response of more than 20 mo seizure free without using antiepileptic drugs." Amazing! The patient also became pregnant and had a child during that time period as well, which would be a seizure stressor for many. Here's hoping that this proves to be a fruitful line of treatment for others with epilepsy.
 

Keith

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New paper, December 2017, first report:
"Here, we report the case of a patient with TS, tentatively prescribed with tiapride and probiotics at first, which alleviated severity of the patient’s symptoms. However, the patient experienced a relapse of symptoms, and tiapride and probiotics could not achieve remission again. Subsequently, we introduced FMT to the patient, which dramatically ameliorated his tic symptoms."

The Effect of Fecal Microbiota Transplantation on a Child with Tourette Syndrome
https://www.hindawi.com/journals/crim/2017/6165239/
 

Bernard

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That's excellent. Glad to see CURE is still funding research that pushes new boundaries. :)
 

Keith

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This new research is about immune cells traveling from gut to brain leading to inflammation and chronic seizure disorder:
Immune Response May Contribute to Pediatric Epilepsy
http://news.feinberg.northwestern.edu/2018/02/immune-response-may-contribute-to-pediatric-epilepsy/

"To their surprise, they found extensive infiltration of inflammatory immune cells that had traveled from the bloodstream into the brain. One type of cell, the gamma-delta T-cell, was especially prevalent. It normally makes up less than five percent of T-cells in the bloodstream, but the investigators found it at proportions of as high as 65 percent in these brain samples."
#gutbrainepilepsyproject by The Gut Club https://www.facebook.com/thegutclub23/
 

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