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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
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.
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.
