Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

[Oliver3]

There is another possibility. Symptoms of corticospinal tract dysfunction due to a brain infection might include muscle weakness, lack of coordination, spasticity, and abnormal reflexes, among others.

I uploaded a compressed summary if you like to compare your symptoms.

Can brain infection causes corticospinal tract malfunction?​

https://swaresearch.blogspot.com/2023/12/can-brain-infection-causes.html​

Thanks for this. It's smthg I need to see my doctor a out. I tried the tests on my own but I'm guessing that's not the way to do it

 

[SWAlexander]

I need to see my doctor a out.

As I suggested before, we need to know first exactly what to treat. This is only possible if we have MRI, CT blood, etc. evidence to either target or exclude. Otherwise, we go in circles.

 

[hapl808]

What’s your source for Clemastine?

My doctor was willing to prescribe since I have allergy issues and previous prescriptions or even OTC like Zyrtec or Claritin haven't worked well for me. Seemed low risk as a next antihistamine to trial.

I'm only taking 1.34mg per day, so possibly a higher dosage could be helpful (I could take double that and be within the prescription).

 

[SWAlexander]

I could take double that and be within the prescription

Experimenting with drugs of any kind and without medical advice is bold.
I did, but I was reading first about possible side effects. https://my.clevelandclinic.org/health/drugs/21223-antihistamines

 

[Oliver3]

Trouble is, in many cases , we are our own advocates and laboratories.
There is so little expertise , especially here in the UK, that you're forced to self experiment

 

[SWAlexander]

that you're forced to self experiment

Same here in Germany. Even while living in the USA, I had to bring the lab code and convince a doctor that I would need this test.

 

[hapl808]

Experimenting with drugs of any kind and without medical advice is bold.

Might be some miscommunication? I said I could double the current dosage and be within my prescription - meaning it was prescribed by my doctor and dispensed by my pharmacist at double my current dosage.

I've definitely experimented with things like supplements and peptides where there's minimal advice, but this isn't one of those times.

But the long term side effects of pretty much all antihistamines do concern me.

 

[SWAlexander]

But the long term side effects of pretty much all antihistamines do concern me.

I can't advise because I'm not a medical professional but you are right about long-term effects.
I can tell you that I pause for a month or so and restart if cytokines begin to act up again.

 

[SWAlexander]

Severe muscle weakness, inability to build any strength through physical therapy.

I wonder if you find this helpful to find your answer.

Muscle Weakness - Myositis is a Autoimmune Condition
https://swaresearch.blogspot.com/2023/12/muscle-weakness-myositis-is-autoimmune.html​

 

[jaybee00]

Ron Davis explainer video.

 

[Riley]

I read the paper and watched the video, but I am not understanding any of this. What is the MS connection, and is he suggesting patients get tested for MS?

I have severe neurological symptoms and am now worried about permanent damage from demyelination. The only thing that keeps me going is the hope that someday I can improve and live somewhat normally.

 

[BrightCandle]

This is weird. It sounds like 50% of ME patients have a low level of MS antibodies which is stripping the myelin sheath and we should get tested and treated. But the thing is historically this isn't what ME patients report, we don't start suffering MS symptoms as far as I have heard. I don't know quite what to make of this finding, perhaps we have a low enough level its repairable.

 

[hapl808]

This is weird. It sounds like 50% of ME patients have a low level of MS antibodies which is stripping the myelin sheath and we should get tested and treated. But the thing is historically this isn't what ME patients report, we don't start suffering MS symptoms as far as I have heard. I don't know quite what to make of this finding, perhaps we have a low enough level its repairable.

Didn't watch the video, but I definitely have MS symptoms. However, isn't 'treating' MS just using things like DMTs to slow down progression? Not like things can be fixed, so I'm not sure the utility of that?

 

[Oliver3]

I remember people disputing that Ron said the m.s. idea was real. Now we have confirmation it is real

 

[Empi]

This is weird. It sounds like 50% of ME patients have a low level of MS antibodies which is stripping the myelin sheath and we should get tested and treated. But the thing is historically this isn't what ME patients report, we don't start suffering MS symptoms as far as I have heard. I don't know quite what to make of this finding, perhaps we have a low enough level its repairable.

Maybe the better way to think about this is that many people with MS might have ME/CFS as well. Those with both, and visible brain lesions, are likely to be diagnosed with MS. Given MS and ME/CFS’ fair degree of symptom overlap (and symptom variability), as well as the relative difficulty of obtaining an ME/CFS diagnosis, I would wager it’s pretty unlikely one would be diagnosed with ME/CFS after being diagnosed with MS. The remaining group, those without MS or those without visible brain lesions, end up in the ME/CFS camp.

 

[Sizzle]

It's definitely interesting, but can't help but feeling it's a bit "thin" hypothesis

 

[Osaca]

I remember people disputing that Ron said the m.s. idea was real. Now we have confirmation it is real

Not one bit. Having antibodies against MBP has absoluteley nothing to do with having MS. There's no markers in blood for MS, you can ask any MS researcher what this means and he'll tell you: Probably nothing, definitely not enough to say someone has MS (which is why it's diagnosed completely differently).

 

[Oliver3]

I don't know man. Ron sounds likes he's saying that there's overlap. Which is what I heard first time round.
Anyway. We can disagree can't we

 

[Oliver3]

I read the paper and watched the video, but I am not understanding any of this. What is the MS connection, and is he suggesting patients get tested for MS?

I have severe neurological symptoms and am now worried about permanent damage from demyelination. The only thing that keeps me going is the hope that someday I can improve and live somewhat normally.

Have you seen the stem cell treatment that is going on

 

[Vlad83]

Not one bit. Having antibodies against MBP has absoluteley nothing to do with having MS. There's no markers in blood for MS, you can ask any MS researcher what this means and he'll tell you: Probably nothing, definitely not enough to say someone has MS (which is why it's diagnosed completely differently).

I was wondering that too. There are commercial tests available for anti-myelin antibodies, but they must not be the same type of antibodies that Ron was looking at (catalytic), since he had to develop his own test. And the way he explains catalytic antibodies is they WILL cause demyelination if present in large enough quantities and in the right locations. Whether this will be full blown MS or not is not really relevant. They will likely cause symptoms.