it seems ron davis may have a new potential treatment

[Learner1]

.I will always believe the quote by Dr. Rodney Graham Professor of Rheumatology & the Hypermobility Clinic in London, UK

he said this, 95% of patients diagnosed with ME/CFS have Ehlers Danlos Syndrome types the other 5% have other rare forms of connective tissue disorders ex: Marfan's etc.

that number doesn't seem believable if you read what people say they have for symptoms around here. Possible, only those ME/CFS patients who have EDS go to Dr Graham have it, which makes sense as he's in the hypermobility clinic...sounds like 1 of the 3 blind men looking at an elephant.

I speculated elsewhere on here that I thought the RD treatment might be L-dopa https://en.wikipedia.org/wiki/L-DOPA --

According to your link L-DOPA increases dopamine in the brain and elsewhere.

I had had multiple tests showing lower dopamine. When I used Martin Pall's protocol to reduce oxidative and nitrosative stress/peroxynitrite formation that is known to be a problem in ME/CFS, in particular taking Kuvan (BH4), my dopamine increased to high normal and had stayed there as I remain on Kuvan. BH4 is needed for the production of catecholamines.

And apparently a Tryptase test is available locally, but its not covered either (no idea what it costs).
http://tests.lifelabs.com/Chemistry/T/TRYPTASE.aspx?s=1&Alpha=T

I believe this is just for tryptase, which is low for most of us, and not the gene @Aidan Walsh is talking about?

 

[Aidan Walsh]

95% seems to be the magic number, reminds me of the kidney bacteria thread.
I'm not buying it.
That said its worth researching further to either confirm or disprove.

Theres a cop out. If there was truth to this then he would want to publish, help more people, get credit and advance science on an intractable international problem.

There are countless papers already Published on spinal fluid leaks everywhere it is nothing new & his reasons are sound. The hardest part of leaks is to find where one is leaking & getting properly diagnosed.

My friend had a leak they could not find it they treated the lower spine & it did not work, it was in her neck & she had it sealed. It is also a common finding in EDS as well & Sports injuries or traumas

The reason he got involved was his daughter is Autistic she had an LP she continued to leak until it was found she was bedridden identical to CFS symptoms.

One guy who has Marfan's had a leak fixed he returned to work he is a lion tamer. I leak clear fluid from my left nose & mentioned this to numerous Doctors, one said he could also be leaking like it meant nothing at all.

There was a video I saw recently a Man who was very athletic had a leak found he needed surgery to seal & fully recovered they ran the images needed his was in the middle of his back missed on other images. There

are also countless CFS people who have Eagle Syndrome surgeries on both sides of the neck...I have an abnormal Dental Panoramic x-ray showing the styloid bones waiting to now get proper CT Contrast Scans done.

Countless diagnosed with ME/CFS EDS have these as
well, some opt for internal surgeries or external, if internal they remove each tonsil the bones sit behind them.

*How many of us have been poisoned by fluoroquinolone antibiotics? Countless

 

[Aidan Walsh]

that number doesn't seem believable if you read what people say they have for symptoms around here. Possible, only those ME/CFS patients who have EDS go to Dr Graham have it, which makes sense as he's in the hypermobility clinic...sounds like 1 of the 3 blind men looking at an elephant.

According to your link L-DOPA increases dopamine in the brain and elsewhere.

I had had multiple tests showing lower dopamine. When I used Martin Pall's protocol to reduce oxidative and nitrosative stress/peroxynitrite formation that is known to be a problem in ME/CFS, in particular taking Kuvan (BH4), my dopamine increased to high normal and had stayed there as I remain on Kuvan. BH4 is needed for the production of catecholamines.
I believe this is just for tryptase, which is low for most of us, and not the gene @Aidan Walsh is talking about?

This is not the tryptase regular blood test it is the Genetic one & is new. One can have a lower than normal tyrptase blood test & have copies as well. The tryptase blood test can be normal numerous times on testing.

One Woman in ICU the Doctor ran tryptase countless times everyday sometimes twice it took a month to see one rise above 30. I have only had one tryptase blood test ever run.

 

[Aidan Walsh]

This is not the tryptase regular blood test it is the Genetic one & is new. One can have a lower than normal tyrptase blood test & have copies as well. The tryptase blood test can be normal numerous times on testing.

One Woman in ICU the Doctor ran tryptase countless times everyday sometimes twice it took a month to see one rise above 30. I have only had one tryptase blood test ever run.

@Learner1 EDS3 Hypermobility also now has also another additional new type criteria it is called HSD hypermobility spectrum disorder. Also, some can have even partial/not full Marfan's syndrome. Until the genes

are found testing is impossible to do. Complications of ME/CFS EDS are long, CCI, Stenosis, tethered spinal Cord, Chiari, spinal leaks & more

 

[Aidan Walsh]

Another young Woman today on 'porphyria sucks' Facebook Group told by Doctors she had EDS 3 hypermobility she was seen by a Dermatologist who ran a urine test sample it was positive for high amounts of porphyria.

I am trying to find out from her if she was ever told she had ME/CFS. This is not the first one I have seen with porphyria in EDS or in ME/CFS...

 

[Boba]

There is a Woman communicating with Ron, she is using Deep Sea Saltwater treatments Detox prior to using Natural Dopamine supplements she runs a Facebook page called DETOXING for ME/CFS her name is Aristea Massaras so maybe Whitney did the Detox

She seems to have cured herself after 8 years:

 

[dylemmaz]

She seems to have cured herself after 8 years:

that’s really interesting i’ll have to look in to it. has anyone else tried it with success that you know of?

 

[Boba]

I dunno. She says she was severe in between. The latest pics show her skiing. Man, I‘d like to that as well even if was a bad snowboarder… check her facebook: https://www.facebook.com/aristea.massaras

Maybe she‘s legit, but she does sell her services as an consultant…

 

[dylemmaz]

I dunno. She says she was severe in between. The latest pics show her skiing. Man, I‘d like to that as well even if was a bad snowboarder… check her facebook: https://www.facebook.com/aristea.massaras

Maybe she‘s legit, but she does sell her services as an consultant…

yeah i’m very skeptical after going through her stuff. me/cfs consultant. seems like a scam to me. there are photos from 2018 with her doing extensive biking. when was she severe, or even sick for that matter?

 

[Martin aka paused||M.E.]

yeah i’m very skeptical after going through her stuff. me/cfs consultant. seems like a scam to me. there are photos from 2018 with her doing extensive biking. when was she severe, or even sick for that matter?

Always alarm bells if these things doesn’t fit together!

 

[wastwater]

If there’s a Pyruvate Dehydrogenase deficiency,do you treat for that is a question I’m trying to answer personally

The Axenfeld-Rieger PITX2 Transcription Factor Directly Regulates the Expression of the Cellular-Stress Responsive PDP2 Gene

https://iovs.arvojournals.org/article.aspx?articleid=2385923

pdp2 = pyruvate dehydrogenase
I read that this deficiency either severe or mild doesn’t present with fatigue so it may belong to M.E and the idea of a metabolic trap
My siblings have this gene set and don’t have M.E

slc13a3 is another gene effected by pitx2
https://pubmed.ncbi.nlm.nih.gov/21873665/

 

[Aidan Walsh]

Another Woman now from North Dakoda on Porphyria Sucks Facebook Group now seen by a VA Dermatologist for skin/hair issues already diagnosed with CFS hEDS now diagnosed with the skin form of porphyria her levels in urine sample were high, a genetic test is next...

 

[Jyoti]

Moderator Note: Sixty-five posts were moved from this thread to a new one:
https://forums.phoenixrising.me/threads/questions-for-ron-davis.84559/ in order that the questions and answers that @Janet Dafoe so graciously offered to transmit to and from Ron Davis can be more easily accessed. Please continue to use this thread for musing and sharing thoughts; the new one is strictly for asking Ron questions through Janet and obtaining his answers. If your posts here seem to be missing, it is almost certain you will be able to find them in the new thread. Thank you.

 

[lenora]

Please listen to Ms. Dafoe (Janet).......This couple knows there are plenty of people waiting to try anything....and I'd be the first to say the young should be treated first. That's fine and just proper.

However, please bear in mind that this sounds like a lot of pressure on this couple and, as we all know, they have quite enough. I know what it's like to feel young and anxious for a cure, but it does take time....and this is a very methodical man. We would all be the same under the circumstances.

When test subjects are needed, they know exactly where to come for them...and you should be applauded for your willingness. In the meantime, remember that both are caring for an extremely ill young man, their son. Let's not add to their already huge pressure.

I'm not the scolding mother, I'm just trying to think of how I would feel in their positions. (I'm closer in age to them). The time to ask questions is when Dr. Davis (Ron) gives an update...until then, I don't believe we're meant to know unless we're contacted privately. Forgive me if you're offended, that's not the intent at all.

I don't know them at all, or Whitney, just know how it feels to be older and have such responsibility. Yours, L.

 

[Whit]

does anyone know if i was to start a fundraiser on the open medicine foundation website if i could explicitly send the funds to rons lab? or does it not allow me to do that and it just goes to the omf in general?

Any donations made to my 2020 birthday fundraiser which is still live on Spotfund go 100% to Ron’s research.

https://www.spotfund.com/story/6a6c7fa4-be86-4d7d-8bb8-bf8d20a242a7

You can also donate directly to OMF and write in the notes section that you want your donation to go to Ronald Davis or you can call it the ME/CFS Collaborative Research Center at Stanford.

 

[Marylib]

Thanks @Martin aka paused||M.E.
Personally, I don't want anyone to sacrifice their own health for research. But Whitney is an adult and can make his own choices and decisions. I hope he says whatever the h*** he wants to say as loud as he wants to say it. The impulse for suicide hangs over every discussion one tries to have around this subject and you never know which way it will go. I agree with what he has written at times - that no matter how low you go, there is the opportunity to take a situation and grow from it personally. If you cling to the past, you don't notice the present moment. I wish you all well and may every new day bring you some form of joy. Money is energy. Without money, energy must come from deep within each human spirit. In that respect there is an inexhaustible supply.

 

[RL_sparky]

Just speculating a bit here. How long till the patient community has access to this proposed treatment that @Whit is on?

I imagine that Stanford will monitor Whitney for a minimum six months but more likely a year looking for side effects or tolerance issues. If all that goes well and Whitney shows progress then I'm guessing it will be written up as a case study to be published.
Next we would need a patient trial. So money would need to be raised, IRB obtained. So that would be over a year, maybe closer to two till results are published.
So I'm guessing were over a year away from knowing the treatment but more like three years from having a doctor feel comfortable writing an off label prescription for this treatment.

Thoughts?

 

[MonkeyMan]

Just speculating a bit here. How long till the patient community has access to this proposed treatment that @Whit is on?

I imagine that Stanford will monitor Whitney for a minimum six months but more likely a year looking for side effects or tolerance issues. If all that goes well and Whitney shows progress then I'm guessing it will be written up as a case study to be published.
Next we would need a patient trial. So money would need to be raised, IRB obtained. So that would be over a year, maybe closer to two till results are published.
So I'm guessing were over a year away from knowing the treatment but more like three years from having a doctor feel comfortable writing an off label prescription for this treatment.

Thoughts?

If this stuff appears to cure Whitney, the moment there is ONE doctor on the planet who is willing to try it on patients who are willing to sign a waiver accepting all risks is the moment when a lot of us will drop everything to see this doctor, regardless of the cost or travel needed.

This is how desperate some of us are.

 

[5vforest]

There are many doctors who treat patients using only case reports (sometimes even anecdotes) as guidance. Whether this is a good or bad thing is up for debate. Also, not everyone has access to these doctors.

 

[Alvin2]

If this stuff appears to cure Whitney, the moment there is ONE doctor on the planet who is willing to try it on patients who are willing to sign a waiver accepting all risks is the moment when a lot of us will drop everything to see this doctor, regardless of the cost or travel needed.

This is how desperate some of us are.

Not a chance in hell.
I am extremely prudent and would prefer not to take anything without a couple decades of use behind it.
If there was an ME treatment i would not chase it until there was reports about how well it work, why it works (extremely important) and what the long term effects are.
If i was near death i might take the risk but as i am severe but not dying i'm not willing to risk getting even worse than i am now.

There are many doctors who treat patients using only case reports (sometimes even anecdotes) as guidance. Whether this is a good or bad thing is up for debate. Also, not everyone has access to these doctors.

I have found the exact opposite around here many doctors are extremely wary of cutting edge medicine, just getting an off patent drug was not easy for me, the doctor was hesitant to even prescribe it becasue its their butt on the line. Their governing body does not take well to experimental treatment that harms patients.