it seems ron davis may have a new potential treatment

[Alvin2]

If she responded then highly likely she has MS all along not ME/CFS.

I had the same thought.

I still feel all of us should look into testing for (GSD) glycogen storage disease types & also hereditary alpha tryptasemia syndrome (HATS)

Can this be ordered elsewhere for those who live in other countries?

found by the NIH/NIAID Fauci's team.

Do you have a link to this?

I will be tested in July my Genetic Doctor signed the request form out.

Any idea if standard genetic testing would find this or does it have to be specifically tested for?

 

[Aidan Walsh]

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

 

[perrier]

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

I am not blaming anyone, but imagine the challenge to do this for so many sick people. And imagine the knowledge required.

 

[Martin aka paused||M.E.]

I am not blaming anyone, but imagine the challenge to do this for so many sick people. And imagine the knowledge required.

It won't help me as I'm very severe and can't see docs

 

[perrier]

It won't help me as I'm very severe and can't see docs

This is the other issue, which you raise. There should be some clinic where severe patients can get help. I am very fed up with all the neglect for this severe illness.

 

[Martin aka paused||M.E.]

This is the other issue, which you raise. There should be some clinic where severe patients can get help. I am very fed up with all the neglect for this severe illness.

So do I. Believe me. I'm fed up with everything

 

[Rachel Riggs]

I had the same thought.

@Aidan Walsh

Hi! To those speculating that I may have MS rather than ME/CFS - I work for Dr. Robert Naviaux as his clinical coordinator and he has personally studied my metabolomics. I do have the chemical signature of someone with ME/CFS. But to be even more specific, about 33% of us with that chemical signature are more auto-immune activated and present a little like Gulf War Illness. I fall into that category.

 

[Alvin2]

Hi! To those speculating that I may have MS rather than ME/CFS - I work for Dr. Robert Naviaux as his clinical coordinator and he has personally studied my metabolomics. I do have the chemical signature of someone with ME/CFS. But to be even more specific, about 33% of us with that chemical signature are more auto-immune activated and present a little like Gulf War Illness. I fall into that category.

Very interesting.
Can you tell us more about this chemical signature?
Could it be detected in anyone else with ME at a commercial or private lab?

In my case everything immune that has been tested is completely normal, in fact until recently virtually every test i have ever had done came back normal.

 

[Rachel Riggs]

@Aidan Walsh

My response to Copaxone is one of the reasons I knew I DIDN'T have MS.
Copaxone does not improve MS symptoms - its aim is to slow progression and number of new lesions.
I always had a weak diagnosis, I had a couple lesions which disappeared over time. That can happen in people who have migraines.

 

[Rachel Riggs]

Very interesting.
Can you tell us more about this chemical signature?
Could it be detected in anyone else with ME at a commercial or private lab?

In my case everything immune taht has been tested is completely normal, in fact until recently virtually every test i have ever had done came back normal.

No, it must be studied via mass spectrometry. Naviaux has three mass spectrometers which each cost half a million dollars and 70k per year to service. Beyond that, the data it produces needs to be interpreted,

 

[Alvin2]

No, it must be studied via mass spectrometry. Naviaux has three mass spectrometers which each cost half a million dollars and 70k per year to service. Beyond that, the data it produces needs to be interpreted,

Good to know.
Can the data be used to predict who will react to Copaxone or did you respond but also have this signature?

 

[voner]

No, it must be studied via mass spectrometry. Naviaux has three mass spectrometers which each cost half a million dollars and 70k per year to service. Beyond that, the data it produces needs to be interpreted,

@Rachel Riggs,

can you update us on the status of the OMF funded study refered to in this:

https://www.omf.ngo/update-metabolomics-validation-study/

 

[Martin aka paused||M.E.]

@Rachel Riggs Thank you for your explanation. That is a good explanation why 10 of us didn't have success!

 

[Aidan Walsh]

@Aidan Walsh

My response to Copaxone is one of the reasons I knew I DIDN'T have MS.
Copaxone does not improve MS symptoms - its aim is to slow progression and number of new lesions.
I always had a weak diagnosis, I had a couple lesions which disappeared over time. That can happen in people who have migraines.

Glad you gave us all a better understanding of what was found in you. I have never had lesions & many said it never helped them

 

[Aidan Walsh]

@Aidan Walsh

My response to Copaxone is one of the reasons I knew I DIDN'T have MS.
Copaxone does not improve MS symptoms - its aim is to slow progression and number of new lesions.
I always had a weak diagnosis, I had a couple lesions which disappeared over time. That can happen in people who have migraines.

Rachel, Have you been ever tested for the copies of the tryptase gene in Houston, Texas found by the NIH/NIAID back in 2016? One can have a normal 10 tryptase & still have these copies passed on at Birth, anything above 8

tryptase is likely hereditary alpha tryptasemia syndrome (HATS) the test is only $169.00 & requires an MD to sign the form for the test. It takes about 4 to 8 weeks for results to come back. key in tryptase on this website

all the info is below including the videos & documents www.genebygene.com

 

[Martin aka paused||M.E.]

What Rachel says "But to be even more specific, about 33% of us with that chemical signature are more auto-immune activated and present a little like Gulf War Illness. I fall into that category.“ makes me think again about how many subgroups might exist.

 

[Aidan Walsh]

What Rachel says "But to be even more specific, about 33% of us with that chemical signature are more auto-immune activated and present a little like Gulf War Illness. I fall into that category.“ makes me think again about how many subgroups might exist.

Firstly, I am sorry to learn Whitney is struggling.

what you describe makes sense, and its really likely he maybe trying out some altered form of copaxone. Was there one other substance we heard of early on the also corrected the signal? SS 31 ?

I could see them- experimenting. That shows just how desperate we are.

I can only imagine - taking any new thing is such a risk with us, our bodies are so sensitive. So i do hope we can learn more.

Just because something can correct the signal may not mean it can be tolerated, its side effects put up with etc.

It also possible to feel MUCH WORSE if a treatment in fact may be- awakening our immune system, if it results in die offs, or other- phenomenon (see recent threads here about detox protocols).

So lets hope this is- a GOOD sign of Better Things to Come

Could even be a form of Suramin for East African sleeping sickness or another parasite infection medicine

 

[Aidan Walsh]

Ok I will add to that - they seem to be going after the Metabolic Trap, they said the yeast do not grow ( become in a sort of cryogenic suspended state ? ) how do we know that in a human that wouldn't simply cause instant death ? maybe human has some way around that, a backup mechanism they don't know about. Also even if it does just make you tired, a human is not a yeast sat on a dish that can't change its environment, humans can change so many variables that might break the metabolic trap e.g. eating various things, exercise, temperature changes, infections, various drugs, rest, etc. If the metabolic trap provides a stable state where almost no energy is created, why do me/cfs patients experience a lot of change in their activity capabilities over time ?

I'm still waiting on the Australian Gold Coast breakthrough on treatments for the Calcium gene found

 

[Boba]

I'm still waiting on the Australian Gold Coast breakthrough on treatments for the Calcium gene found

Is this the TRPM3 topic? I just read a little about it. Not sure if I understood the theory behind. Why do you think it is a breakthrough? Thanks!

 

[Aidan Walsh]

Is this the TRPM3 topic? I just read a little about it. Not sure if I understood the theory behind. Why do you think it is a breakthrough? Thanks!

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