ONLINE TALK with Prof Ron Davis: Progress and Challenges for a ME/CFS Diagnostic

Boba

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Maybe the graduate student did not crash BECAUSE he/she was getting better and not the other way round. At least that is my experience.. I don’t get better from not crashing.

Anyway, I like the part when Ron says, that there is no permanent damage because there are pwmes who recover completely.. I really hope this is true
I always wonder whether this is just a made up story to keep people hopeful
 

Pyrrhus

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Anyway, I like the part when Ron says, that there is no permanent damage because there are pwmes who recover completely.. I really hope this is true
I believe it too, mostly. I have had two full remissions where all my symptoms disappeared.

If it can happen temporarily, then it seems possible that it could happen permanently. (Once we know how to make it happen!)
 

SlamDancin

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Did OMF try giving patients a small dose of Levodopa (Sinemet) to see if it would help the cognitive issues?
If they did he didn’t mention it. He transitioned from the suspicion of low dopamine to talking about Abilify. In case you’re interested, I found an interesting mice study where Berberine was successful in treating Parkinson’s disease by increasing production of BH4 by gut microbiota which in turn increased the production of l-dopa through the phenylalanine-tyrosine-l-dopa pathway. The l-dopa was then transported to the brain where it increased dopamine. I’ll link it below;

https://pubmed.ncbi.nlm.nih.gov/33623004/
 

Alvin2

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If they did he didn’t mention it. He transitioned from the suspicion of low dopamine to talking about Abilify. In case you’re interested, I found an interesting mice study where Berberine was successful in treating Parkinson’s disease by increasing production of BH4 by gut microbiota which in turn increased the production of l-dopa through the phenylalanine-tyrosine-l-dopa pathway. The l-dopa was then transported to the brain where it increased dopamine. I’ll link it below;

https://pubmed.ncbi.nlm.nih.gov/33623004/
Very interesting.

If Levodopa (Sinemet) helps cognition in ME then its a cheap, easily accessible treatment that any GP can prescribe (if it works).
 

Springbok1988

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At 1:08:15 Dr. Davis talks about nematodes found in the nasal passages of some people with ME. Does anyone have any more information about this?
 

Violeta

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Very interesting.
@Jessie 107 Sorry this will be very short but the new info I got from this was that in the severe patients they have been finding:

-High phenylalanine
-Low BH4
-Suspected low dopamine
-Nitrogen metabolism problems

BH4 is necessary to metabolize phenylalanine into tyrosine and then tyrosine into l-dopa, which may lead to low dopamine. I’m going to see if adding Vitamin C/Folate to help increase BH4 might give some benefit.
Have you found anything else about nitrogen metabolism problems?

It looks like BH4 might help with nitrogen metabolism problems, is that correct?
 
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Berberine is quite risky to try.
I have a diagnosed BH4 and dopamine deficiency via a spinal tap and a microbiome with minimal good bacteria. Can you let me know why I shouldn't mess with berberine? I think it caused a big reaction for me the other week but I only took 42 MGs via BrainGain that had 4 or so other supps in it.
 

Alvin2

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I have a diagnosed BH4 and dopamine deficiency via a spinal tap and a microbiome with minimal good bacteria. Can you let me know why I shouldn't mess with berberine? I think it caused a big reaction for me the other week but I only took 42 MGs via BrainGain that had 4 or so other supps in it.
Whats tests were done to determine this?
 

SlamDancin

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I have a diagnosed BH4 and dopamine deficiency via a spinal tap and a microbiome with minimal good bacteria. Can you let me know why I shouldn't mess with berberine? I think it caused a big reaction for me the other week but I only took 42 MGs via BrainGain that had 4 or so other supps in it.
Berberine screwed up my gut bad. Looked good on paper I agree with that