Ron Davis Research Update

[andyguitar]

I'm still fascinated by Jeff's viral titers going back to normal after fixing his CCI. He had multiple high viral titers for a long time (I think for 3 different viruses) and they all went back to baseline after his surgery!!

Yeah it's pretty odd @ljimbo423 something to do with the medication he had for the surgery perhaps?

 

[ljimbo423]

Yeah it's pretty odd @ljimbo423 something to do with the medication he had for the surgery perhaps?

It don't look like that was it. The surgery also completely stopped his MCAS, POTS, PEM, his high viral titers, gut symptoms, everything! So somehow the brain compression/inflammation from the CCI, caused all these symptoms-wow!

 

[Rufous McKinney]

gut symptoms, everything

That one is really impressive in my view. I improved many gut symptoms here, without adding any probiotics.
24 later, on four herbs, much gut improvement. I could not have changed my gut flora in 24 hours.

So if their gut symptoms went away quickly thereafter: that seems to suggest conditions causing gut issues have less to do with the critters living there, and more to do with: other aspects of gut function.

Was any gut data collected on the CCI patients, before and after? Does their blood show LPS before and post CCI surgery?

How did: leakiness (or BB leakiness) correct itself so quickly? Assuming it did. (maybe it didn't).

 

[ljimbo423]

So if their gut symptoms went away quickly thereafter: that seems to suggest conditions causing gut issues have less to do with the critters living there, and more to do with: other aspects of gut function.

I don't know how long it took for his gut symptoms to go away but it could have been a functional issue in the gut, caused by the brain, possibly.

Was any gut data collected on the CCI patients, before and after? Does their blood show LPS before and post CCI surgery?

I don't know if there was gut data collected before or after their CCI surgery but that would be interesting to see!

How did: leakiness (or BB leakiness) correct itself so quickly? Assuming it did. (maybe it didn't).

Again, I don't know if they had a leaky BBB and if they did, how long it took to correct itself but would be really interesting to find this out too.

 

[Neunistiva]

Not yet proving the metabolic trap is incorrect seems a low bar to clear

I think that was just Dr. Davis' way of saying they are doing proper science and being careful. You don't get a hypothesis you like and then set out to prove that it's correct because you'll get blinded by biases. (PACE trial, cough)

Doing your best to poke holes in your own hypothesis and failing is a higher bar to clear than just finding things that align with your hypothesis and leaving it at that, which is what most researchers do because only positive findings gets published.

I'm very skeptical and would want strong evidence. Ron saying it is likely to be true seems extremely premature.

Dr. Phair said they have submitted paper on metabolic trap for peer review and publishing so we'll all find out soon enough.

 

[Rufous McKinney]

I think that was just Dr. Davis' way of saying they are doing proper science and being careful.

I think these comments refer to: testing the null hypothesis, and that basic scientific method.

Thats how studies are set up and statistics analyzed.


Pretty remarkable on Phair- of course we need to get thru Peer Review.

 

[Rufous McKinney]

I think that was just Dr. Davis' way of saying they are doing proper science and being careful. You don't get a hypothesis you like and then set out to prove that it's correct because you'll get blinded by biases.

this link contains a fairly good basic explanation of hypotheses, generating them, testing the null hypothesis, and explaining "P values" ie the probability that what you have measured was: due to chance.

https://stattrek.com/hypothesis-test/how-to-test-hypothesis.aspx

 

[ebethc]

cc: @Rufous McKinney and @ljimbo423

I'm now wondering how a core problem w the neuro system and/or connective tissue (EDS, MCAS, etc) cascade into the "downstream" problems like metabolic trap, digestive issues, breathing issues, POTS etc. I wish someone would evaluate that...

 

[ljimbo423]

cc: @Rufous McKinney and @ljimbo423

I'm now wondering how a core problem w the neuro system and/or connective tissue (EDS, MCAS, etc) cascade into the "downstream" problems like metabolic trap, digestive issues, breathing issues, POTS etc. I wish someone would evaluate that...

Do you mean from CCI as the cause, point of view, causing all these other problems?

 

[ebethc]

Do you mean from CCI as the cause, point of view, causing all these other problems?

I mean any neuro abnormality or "glitch", including but not limited to CCI/AAI, Chiari malformation.... Weirdly, the neuro root cause has been on my mind this year (as you know, I've been experimenting w the higher fat diet developed/researched/published that alleviates M.S. severity...). I hadn't heard about CCI/AAI, etc., and I don't know if that's an issue for me. The neuro track remedies that I've devised for myself have been helpful, though (when I can afford them!). Higher fat diet, cranial sacral work, fish oil & astaxanthin all help w neuro symptoms (plus non-corn vitamin C for MCAS, magnesium/malic acid for muscles, and occasional betaine, low-carb & IF for digestion).

I hope there is more research in this area (ie framing CFS as a Neuro-Immune disease, like M.S.). The stuff I've been doing is incrementally helpful, but the science community needs to step up if I'm ever going to truly recover.

one last comment re neuro track: I saw an allergist who did extensive testing and NONE of my tests came back positive. Which was puzzling b/c I'm so reactive to dust, pollen, pollution PM.. (neither she nor I knew about MCAS so unfortunately, no MCAS testing). I told her that pollution particulate matter is a huge trigger for me, and a very bad experience w high PM (like Cali forest fires) can send my health into a tailspin for months.... She said it's not an allergic reaction (IGE), but the PM is stimulating my nervous system.... She couldn't help me and referred me to another doc (because, of course!) However, I think she was on the right track. I would take it a step further and say the PM triggers my nervous system, and that stimulates a MCAS reaction.

 

[Rufous McKinney]

I told her that pollution particulate matter is a huge trigger for me, and a very bad experience w high PM (like Cali forest fires) can send my health into a tailspin for months...

ok: now I am kinda shocked. I am here: in the PM wildfire area, also.

 

[Rufous McKinney]

I told her that pollution particulate matter is a huge trigger for me, and a very bad experience w high PM (like Cali forest fires) can send my health into a tailspin for months.... She said it's not an allergic reaction (IGE), but the PM is stimulating my nervous system.

@ebethc: Recently I was pondering (again) WHY did I get so much worse with ME over this last year.

Maybe: You have just hit on a major theory!

Tragically,our place went up in 285,000 acre Thomas Fire. We were ejected. Drove North. We spent two months elsewhere, another month in Mexico, then came back. All the stress and trauma of losing most everything was of course internally massively distressing and stressful.

BUT: I was still WAY more functional than now, 10 months later. WHy?

So I moved back to: It all burned up. (the entire surrounding area 360 degrees).

Lawyers have said the ashes are toxic. Letters were sent to everyone, I had them leaf blowered into my face repeatedly in the cute little neighborhood I camped out in for a while..

So: two bouts of SEVERE gastrointestinal destruction,violentlly ill for days (twice in 4 months, ER level) and its seems like: from all that, I have not recovered.

WHERE IS SHERLOCK HOLMES?

 

[ebethc]

@Rufous McKinney

wow... so sorry about your loss! one of the worst housing nightmares, fire or flood.

yes, you can look on pubmed for "particulate matter" and find lots of info on the deleterious health effects... (I would find a few for you but my internet connection is bad today, so it would take forever) ... PM affects glucose metabolism; it's a risk factor for diabetes. PM is also a risk factor for Alzheimers (which could arguably be called a neuro-immune illness b/c it may be due in part to failure of the glymphatic system, ie the lymph system in the brain)

 

[Cam Newton]

cc: @Rufous McKinney and @ljimbo423

I'm now wondering how a core problem w the neuro system and/or connective tissue (EDS, MCAS, etc) cascade into the "downstream" problems like metabolic trap, digestive issues, breathing issues, POTS etc. I wish someone would evaluate that...

If the metabolic trap hypothesis is correct, then it would not be considered a downstream problem. It would be the cause. Everything else would be downstream of it.

 

[ebethc]

If the metabolic trap hypothesis is correct, then it would not be considered a downstream problem. It would be the cause. Everything else would be downstream of it.

how does metabolic trap cause CCI/AAI/Chiari Malformation, etc.? I thought it would be the other way around

I guess I don't understand the metabolic trap hypothesis, and my connection is slow today, so i can't watch the most recent R.D. video describing updates, so maybe I missed something

 

[Cam Newton]

how does metabolic trap cause CCI/AAI/Chiari Malformation, etc.? I thought it would be the other way around

I guess I don't understand the metabolic trap hypothesis, and my connection is slow today, so i can't watch the most recent R.D. video describing updates, so maybe I missed something

I didnt know what those terms meant, but after a quick google it seems that inflammatory illnesses can also cause them. And the metabolic trap can cause inflammation of various kinds.

Not to mention there is only anecdotal evidence regarding those other symptoms you mention.