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"Exercise Tests Suggest Autoimmunity..." Cort Johnson

TrixieStix

Senior Member
Messages
539
Cort says

I believe I'm right in saying that Ron hasn't said this, he's said that it could be but that it also could be other things, nothing has been proven yet?
Yeah I'm certain you are correct. As far as I know Ron Davis has only said an "autoantibody" is just one thing on a list of different possible things it could be.
 

Cinders66

Senior Member
Messages
494
Has anyone actually tried the drug mestonin here?
I saw it mentioned a while ago and asked my GP for it as I wanted a beta block type medication anyway. She said she could not prescribe it (I'm in uk) as it is only licensed for myasthenia gravis but she said someone else might be able to prescribe it. She put me on propanol which I didn't feel agreed with me.
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
Cort says

iCPET tests needed to identify three under-recognized causes of exercise intolerance, the third of which concerns ME/CFS: preload failure or the inability of the blood vessels to provide the heart with enough blood to pump effectively. Several studies suggest that preload failure is causing the small hearts in ME/CFS.

Here are the studies I think Cort is alluding to.

Miwa's first study:
https://www.ncbi.nlm.nih.gov/pubmed/24736946
" In conclusion, a small LV size with a low cardiac output was common in ME patients, in whom OI was extremely common. Cardiac dysfunction with a small heart appears to be related to the symptoms of ME."

Miwa's second study
http://www.ncbi.nlm.nih.gov/pubmed/27401397
"The echocardiographic examination revealed that the mean values for the left ventricular end-diastolic diameters, stroke volume index, and cardiac index as well as the mean blood pressure were all significantly smaller in the ME group than in the Controls."

Newton's study
http://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/
" The big clue to all this appears to be the reduced left ventricle mass. If ME/CFS patients were deconditioned their entire heart should be smaller but only the left ventricle is. The left ventricle is where blood from the veins enters the heart. If blood flows to the LV are reduced the LV is going to be smaller simply because it’s not working out as much."


Chronic fatigue syndrome in women assessed with combined cardiac magnetic resonance imaging
http://link.springer.com/article/10.1007/s12471-016-0885-8
"In patients with CFS, CMR demonstrated lower LV dimensions and a mildly reduced LV function."
 
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Orla

Senior Member
Messages
708
Location
Ireland
Has anyone actually tried the drug mestonin here?
I saw it mentioned a while ago and asked my GP for it as I wanted a beta block type medication anyway. She said she could not prescribe it (I'm in uk) as it is only licensed for myasthenia gravis but she said someone else might be able to prescribe it. She put me on propanol which I didn't feel agreed with me.

I tried it years ago and liked it initially but then I felt it was making me drowsy so I came off it. Maybe I should try it again at a lower dose or intermittently or something? Or stick out the drowsiness to see if it passes? It was over 10 years ago I tried it.

I also didn't like propanol but I am now on Procoralan/Ivabradine which I much prefer. I helps a little but I still get significant dizziness on"prolonged" standing (interestingly I have noticed it takes me longer to get to sleep if I don't take it).
 

Hip

Senior Member
Messages
17,824
. @Hip, in your opinion from all your research, do you believe this will maintain itself after I stop IVIG and Ritux?

I am sure you can confidently answer this question yourself, having like me read the rituximab discussions on this forum for many years. As you know, some patients require repeated rituximab infusions after a year or so, when the effect wears off. Others only need one course rituximab, and that seems to last indefinitely. And yet other don't respond at all to rituximab.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yeah I'm certain you are correct. As far as I know Ron Davis has only said an "autoantibody" is just one thing on a list of different possible things it could be.
At the Stanford symposium he said something like the factor is in the size range that could include autoantibodies. Its tempting to speculate its an autoantibody but its premature to claim it for sure. It might however make the top of the possibilities list.
 

Hip

Senior Member
Messages
17,824
As far as I know Ron Davis has only said an "autoantibody" is just one thing on a list of different possible things it could be.

The factor/autoantibody in the blood that Ron Davis / Fluge and Mella find negatively affecting cells cannot be the same as the autoantibody discussed in Systrom's theory, because the former is observed to directly inhibit energy metabolism of isolated cells in vitro, whereas the latter only inhibits energy metabolism indirectly, by constricting blood vessels and thereby reducing oxygen supply.

So as far as I can see, Systrom's theory is different to the observations of Ron Davis / Fluge and Mella. However, it is feasible that there may be more than one factor/autoantibody in present in ME/CFS patients, so it is possible that both processes might occur in ME/CFS.
 

Demepivo

Dolores Abernathy
Messages
411
The part about Pyridostigmine (Mestinon) is really interesting...

From MEpedia

Mestinon (Pyridostigmine) is an aceytlcholinesterase inhibitor used to treat myasthenia gravis. It inhibits the acetylcholinesterase enzyme from breaking down acetylcholine, resulting in higher circulating levels of the neurotransmitter.

Myyastenia gravis affects facial muscles but the muscle weakness experienced sounds not unlike that in legs & arms of many ME/CFS patients including myself...

Background reading

http://me-pedia.org/wiki/Myasthenia_gravis
http://me-pedia.org/wiki/Acetylcholine
http://me-pedia.org/wiki/Mestinon
 

mattie

Senior Member
Messages
363
Based on Cort's article and the POTS / Mestinon trials that have been done,
I think this is something I'd really like to try. POTS is a major issue for me.

I have read however there are some concerns for people with asthma
as it could potentially worsen this condition.

Let's see if I can get my MD on board with this...
 

echobravo

Keep searching, the answer is out there
Messages
137
Location
Norway
WebMD :

"Huperzine A is thought to be beneficial for problems with memory, loss of mental abilities (dementia), and the muscular disorder myasthenia gravis because it causes an increase in the levels of acetylcholine. Acetylcholine is one of the chemicals that our nerves use to communicate in the brain, muscles, and other areas."

http://www.webmd.com/vitamins-supplements/ingredientmono-764-huperzine a.aspx


Some sources of Huperzine A;

https://iherb.com/pr/source-naturals-huperzine-a-200-mcg-120-tablets/6335

User review: "Great substitute for Mestinon (remedy for Myasthenia Gravis), but also good for muscle weakness or brain fog due other causes."

https://iherb.com/pr/Life-Extension-Huperzine-A-200-mcg-60-Veggie-Caps/41219

https://www.luckyvitamin.com/p-1335...-for-learning-and-memory-100-mcg-120-tablet-s
 

Cinders66

Senior Member
Messages
494
WebMD :

"Huperzine A is thought to be beneficial for problems with memory, loss of mental abilities (dementia), and the muscular disorder myasthenia gravis because it causes an increase in the levels of acetylcholine. Acetylcholine is one of the chemicals that our nerves use to communicate in the brain, muscles, and other areas."

http://www.webmd.com/vitamins-supplements/ingredientmono-764-huperzine a.aspx


Some sources of Huperzine A;

https://iherb.com/pr/source-naturals-huperzine-a-200-mcg-120-tablets/6335

User review: "Great substitute for Mestinon (remedy for Myasthenia Gravis), but also good for muscle weakness or brain fog due other causes."

https://iherb.com/pr/Life-Extension-Huperzine-A-200-mcg-60-Veggie-Caps/41219

https://www.luckyvitamin.com/p-1335...-for-learning-and-memory-100-mcg-120-tablet-s

Thanks, it looks interesting. Wasn't there a small drug trial years ago of a substance derived from daffodils, wasn't that to do with acetylcholine?
Has anyone tried these supplements?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@John Mac @Murph Thanks for posting the info on endothelial function.

I have A1 adrenergic antibodies, POTS and high, not low blood pressure, managed with telmisartan. Trying to figure out why mine is high when many here have low BP.

Would it be that I'm just in a different phase of the progression? My heart seems fine, I can do some non-aerobic exercise, and I have hypercoagulation issues as well.

Thanks for any thoughts.

@echobravo From my understanding, IVIG mostly contains IgG, with only small amount of the other immunoglobulins. Have you had your IgG subclasses tested? If they are low, then IVIG may help.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards - This may be a daft question but if ME and/or OI is/are caused by autoimmunity (Systrom in Cort's article says that antibodies to acetylcholine are showing up in his tests), and if peanut allergy can be cured by having patients eat small amounts of peanut flour combined with high doses of Lactobacillus rhamnosus:



...then could our autoimmunity to acetylcholine (or whatever the culprit actually proves to be) be treated by ingesting small amounts of it with high doses of Lactobacillus rhamnosus?

I'm guessing the answer is 'no' but can't resist asking the question. :)

[I lurk these days :ninja: but still enjoy reading the forum on and off, and seeing you all in action!]

@Sasha, Yes, I think it is no. Autoimmunity and allergy are very different things. Nobody has ever desensitised an autoimmune disease as far as I know.

I am a bit confused by the story here and have not looked in detail but antibodies to acetyl choline would not really do anything and probably do not exist. There are antibodies to acetyl choline receptors in myasthenia. There are also antibodies to a different receptor found rather non-specifically in a range of patient groups including ME but I have not yet seen anything to suggest they are likely to be important in themselves.