it seems ron davis may have a new potential treatment

[jaybee00]

I speculated elsewhere on here that I thought the RD treatment might be L-dopa https://en.wikipedia.org/wiki/L-DOPA --I think @leokitten replied that L-dopa is not without risks/tolerance issues. See here for example

https://parkinsonsnewstoday.com/201...rking-parkinsons-seeking-prolonged-treatment/

 

[bensmith]

This makes some sense but i hope not since i prob can’t take it. I do have some but been too
Chicken to try it.

i beleive some members on bere have taken it and have not found luck. Not pos though.

 

[Aidan Walsh]

I speculated elsewhere on here that I thought the RD treatment might be L-dopa https://en.wikipedia.org/wiki/L-DOPA --I think @leokitten replied that L-dopa is not without risks/tolerance issues. See here for example

https://parkinsonsnewstoday.com/201...rking-parkinsons-seeking-prolonged-treatment/

Glad the mention of Parkinson's has come up on here, Dr. Ian Carroll has found spinal fluid leaks in Parkinson's, Marfan's, CFS, EDS. numerous illnesses & he is at Stanford in the pain Clinic & also working out of Neurology as well.

He put out numerous Videos on Youtube. He refuses to Publish saying his time is spent on making patients well

 

[perrier]

Yes, but not any breakthrough, they mentioned Cause & I have heard this many many times before...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.

He also said Michael Jackson no doubts his features were bendy, flexible, hypermobile he suffered from Ehlers Danlos Syndrome all along & would be alive today if he was properly diagnosed. I know he was being treated by a Naturopath for Lyme disease another label thrown at him which he did not likely have at all...

EDS can also have what are called 'cross-overs' multiple types combined. I know one with EDS3 he also has Tenascin X with zero research done on this type & some have the Vascular type or others...New criteria EDS3 could have instead HSD Hypermobility Spectrum Disorder....

EDS Research is pathetic, almost non-existent with no proper working treatments. One cannot fix anything if one does not know why it is broken. There are too many theories out there now

Well, if Dr Graham claims this, one must ask why so many ME researchers aren't looking at this. There is not diagnostic test for Ehlers, as far as I know. But where I disagree is that folks with Ehlers do not have PEM, or exertion intolerance. I have a close friend whose adult daughter has Ehlers, so I am getting a close look. Not the same presentation. And yes, the research into Ehlers is pathetic. And those patients are also abandoned.

 

[Sushi]

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.

I think that this cross-over needs more examination. If we knew more about EDS we might know a lot more about ME/CFS. Since, symptom-wise, they have a lot in common, it would be surprising if the diagnostics weren’t sometimes confused.

 

[perrier]

I think that this cross-over needs more examination. If we knew more about EDS we might know a lot more about ME/CFS. Since, symptom-wise, they have a lot in common, it would be surprising if the diagnostics weren’t sometimes confused.

Sushi, after asking my friend, who has many other friends with
Ehlers, I am told that yet there is an overlap of symptoms, but they do not have systemic exertion intolerance. Of Course, I am ready to be corrected.

 

[Sushi]

Sushi, after asking my friend, who has many other friends with
Ehlers, I am told that yet there is an overlap of symptoms, but they do not have systemic exertion intolerance. Of Course, I am ready to be corrected.

Though Dysautonomia is often listed in the diagnostic criteria for certain forms of EDS and exercise intolerance is one of the symptoms of Dysautonomia.

 

[Aidan Walsh]

Though Dysautonomia is often listed in the diagnostic criteria for certain forms of EDS and exercise intolerance is one of the symptoms of Dysautonomia.

I believe they are all the same illnesses with different name labels. One will see them all jumping fences IF a treatment was found

 

[Martin aka paused||M.E.]

It's not sth with L-DOPA etc. It's another drug

 

[bensmith]

Abilify isn’t modified ldopa? Is it?

glad to hear this though.

 

[Martin aka paused||M.E.]

Abilify isn’t modified ldopa? Is it?

glad to hear this though.

Yes, L-DOPA as dopamine agonist. Stronger than Abilify. But it's not that stuff

 

[jaybee00]

How do you know it’s not L-dopa? She only says it’s not modified Abilify. L-dopa is a dopamine precursor. Very different from Abilify.

 

[Martin aka paused||M.E.]

How do you know it’s not L-dopa? She only says it’s not modified Abilify. L-dopa is a dopamine precursor. Very different from Abilify.

I can't know it for sure but I've heard Ron uses L-DOPA for his modified Abilify

 

[Alvin2]

It's not sth with L-DOPA etc. It's another drug
View attachment 43587

If it were Levodopa (or Sinemet (levodopa-carbidopa)) then its dirt cheap and available at every pharmacy.
And that would mean we all have Parkinsons, whether primary or secondary.

 

[Aidan Walsh]

How do you know it’s not L-dopa? She only says it’s not modified Abilify. L-dopa is a dopamine precursor. Very different from Abilify.

If it were Levodopa (or Sinemet (levodopa-carbidopa)) then its dirt cheap and available at every pharmacy.
And that would mean we all have Parkinsons, whether primary or secondary.

The only shaking I get is my left thumb doing things on the phone & I do not use it online either just texting/calls

 

[jaybee00]

And that would mean we all have Parkinsons, whether primary or secondary.

No. L-dopa treated EL https://en.wikipedia.org/wiki/Encephalitis_lethargica which is probably something like ME/CFS. It worked great until it didn't work https://en.wikipedia.org/wiki/Awakenings Also there is one patient on the FB group who has responded to L-dopa, but she also has some other issues in addition to ME/CFS.

 

[Alvin2]

No. L-dopa treated EL https://en.wikipedia.org/wiki/Encephalitis_lethargica which is probably something like ME/CFS. It worked great until it didn't work https://en.wikipedia.org/wiki/Awakenings Also there is one patient on the FB group who has responded to L-dopa, but she also has some other issues in addition to ME/CFS.

Interesting

 

[5vforest]

He refuses to Publish saying his time is spent on making patients well

Oof

 

[Alvin2]

Yes, but not any breakthrough, they mentioned Cause & I have heard this many many times before...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.

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.

He refuses to Publish saying his time is spent on making patients well

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.

 

[Alvin2]

Yes, the HATS test can be done from anywhere in the World. All the links are on the website on HATS I posted the link there.

Also if you open up the Youtube key in tryptase you will see one of their author(s) Dr. Joshua Milner, there are over 4 videos. Manchester Hospital Immunologists in the UK were involved in these findings so the work has been replicated already.

It will not be found by any standard testing of DNA the same thing for GSD types or porphyria types they also have their own panels. The HATS work was Published in Nature back in 2016 or 2017.

Rule out GSD & porphyria & check your levels of D-lactate acidosis this is not the L-lactate test

1. (HATS) hereditary alpha tryptasemia multiple copies of the tryptase gene (DNA Mouth swab) test kit

2. (GSD) glycogen storage disease genetic panel

3. Porphyria types genetic test, blood, urine

4. D-lactate acidosis blood, urine

If she responded then highly likely she has MS all along not ME/CFS. I still feel all of us should look into testing for (GSD) glycogen storage disease types & also hereditary alpha tryptasemia syndrome (HATS) in Houston, Texas for $169.00 by (genebygene) found by the NIH/NIAID Fauci's team.

2 to 3 copies of the tryptase gene inherited. A Doctor needs to sign the request form out & also make sure none of us actually have any porphyria types. I am impressed with Avenger's findings on D-lactate Acidosis. Key in tryptase on this website all the documents/videos are at the bottom of the page from NIH/NIAID,

I will be tested in July my Genetic Doctor signed the request form out. I had the blood test once only for tryptase it came back at 10 normal but anything above 8 is highly likely copies of the tryptase gene.

A tryptase 'mouth swab DNA test is sent to your home' by this website link key in tryptase on their home page www.genebygene.com

Thats a lot of scratch for testing.
And its apparently so rare Wikipedia doesn't have an article on it.
I did find this:
https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome#:~:text=Hereditary alpha tryptasemia syndrome (HATS) is characterized by,of HATS are associated with multiple organ systems.

And apparently a Tryptase test is available locally, but its not covered either ($77 for the test).
http://tests.lifelabs.com/Chemistry/T/TRYPTASE.aspx?s=1&Alpha=T