it seems ron davis may have a new potential treatment

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Aidan Walsh

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There was one Guy in Australia with CFS his Doctor gave him an Osteo injection that people get every 6 months it was called Prolia the other name used is Denosumab.

I think the term 'mab' is a cancer-like medicine like Rituximab. His illness lifted it is also used during or after Women's menopause. Maybe it has to do with the calcium gene found by the Gold Coast researchers?
 
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Strawberry

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Exciting news, but I wonder how many people it will help if it helps Whitney. While his early years of this disease match mine exactly, he has become very severe while I’m just moderate. And I’ve been sick over 25 years. As long as someone benefits it’s great though.
 

Martin aka paused||M.E.

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There was one Guy in Australia with CFS his Doctor gave him an Osteo injection that people get every 6 months it was called Prolia the other name used is Denosumab.

I think the term 'mab' is cancer medicines like Rituximab. His illness lifted it is also used during or after Women's menopause. Maybe it has to do with the calcium gene found by the Gold Coast researchers...
-mab is always a biological
 

dylemmaz

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Exciting news, but I wonder how many people it will help if it helps Whitney. While his early years of this disease match mine exactly, he has become very severe while I’m just moderate. And I’ve been sick over 25 years. As long as someone benefits it’s great though.
the dafoe family has said that testing precedes the medication. i suppose this testing then personalizes the treatments a little bit. not to look in to things too much but janet said ”the new treatment possibilities.” i suppose a more personalized approach might be had with this treatment, that will benefit us all? i’m not sure though
 

Aidan Walsh

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And another one who knows better than science does. Yes and the majority doesn't get substantially better but needs “the magic bullet”.

100% multiple causes & likely an illness not diagnosed in so many. I have seen also a Man for 25 years he was told he had ME/CFS he did not it was lyme from day one...

What is ME/CFS? (a basket name.) In another case scenario, GSD types yet none had these panels done.

One cannot diagnose EDS 3 or HSD there is no blood test marker, all based on Doctors doing their in-office procedures. How many have HATS? (hereditary alpha tryptasemia syndrome), ask little Toni Fauci
 
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bensmith

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Exciting news, but I wonder how many people it will help if it helps Whitney. While his early years of this disease match mine exactly, he has become very severe while I’m just moderate. And I’ve been sick over 25 years. As long as someone benefits it’s great though.

I have this same concern.

Hope he sees some improvement, it’s an odd kind of pressure waiting on baited breath to hear of how it goes.
 

junkcrap50

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There was one Guy in Australia with CFS his Doctor gave him an Osteo injection that people get every 6 months it was called Prolia the other name used is Denosumab.

I think the term 'mab' is a cancer-like medicine like Rituximab. His illness lifted it is also used during or after Women's menopause. Maybe it has to do with the calcium gene found by the Gold Coast researchers?
Do you have a source of the story of this guy? Why did they give him the Osteo injection?
 
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Exciting news, but I wonder how many people it will help if it helps Whitney. While his early years of this disease match mine exactly, he has become very severe while I’m just moderate. And I’ve been sick over 25 years. As long as someone benefits it’s great though.

I think, while the cause might be different between pwmes and also the „something in the blood“ might not be the same in every pwme, there is a possibility, that the metabolism problem that leads to the energy deficit might be the same in all pwmes.

In that case we would all profit from that drug
 

Aidan Walsh

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i was able to get whitney to respond to me in one of his most recent instagram posts. he said that he has been feeling worse recently, the worst he has in a year. reason being because of a test that ron had him do for a new medication. i had asked him if the test he was doing would lead to a potential treatment for the community, or if we could have this test performed ourselves. this is what he responded with:

“it’s a test for a possible drug that Ron Davis is working on. I am the volunteer guinea pig. If the drug helps you will all be able to take the test and the drug very soon. ❤️

my suspicions are copaxone. ron has said recently he has been trying to alter the drug to avoid allergic reactions developing over time. if you aren’t aware copaxone was able to make sick cells react in the same way that healthy cells do. according to the nanoneedle device the cfs cells couldn’t be differentiated between healthy control cells after treatment with the drug (my layman’s understanding). this is just my suspicion and i could be completely wrong.

the only thing is, i cant wrap my head around what test whitney would have had to do in order to test for this medication. or what tests one would even have to do to ”test for a medication?” what does that mean???? the testing must have required something to do with exertion, because whitney said after the testing he felt the worst he has in a year? i suppose it could have been some sort of metabolic exercise testing?

what drug do you think ron may be working on?

What test needs to be done before with copaxone? Then we would know it is not this drug at all
 
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Martin aka paused||M.E.

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the dafoe family has said that testing precedes the medication. i suppose this testing then personalizes the treatments a little bit. not to look in to things too much but janet said ”the new treatment possibilities.” i suppose a more personalized approach might be had with this treatment, that will benefit us all? i’m not sure though
A year ago Fereshteh, which I have much respect for, told me that she thinks that we will have to look for each patient's needs (personalized medicine) until we know for sure what's going on with ALL of us
 

perrier

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A year ago Fereshteh, which I have much respect for, told me that she thinks that we will have to look for each patient's needs (personalized medicine) until we know for sure what's going on with ALL of us
If that is what Fereshteh said then where will we get all the doctors with the ability to do this kind of thing. I suspect the fact may not be incorrect, but where will this vast help be coming from?
 

Martin aka paused||M.E.

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If that is what Fereshteh said then where will we get all the doctors with the ability to do this kind of thing. I suspect the fact may not be incorrect, but where will this vast help be coming from?
From some specialists like Kaufmann and Chedda who helped many patients quite a lot! Unfortunately, they are overrun by patients.
Sorry Perrier! It's not my fault! And hers either!
Martin
 

Aidan Walsh

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I hope it's not Copaxone. Ten patients including me tried it without success. Tried it two times, 2 and 4 months: nothing! Only Rachel Riggs reported success.

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
 
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