"Exercise Tests Suggest Autoimmunity..." Cort Johnson

[Gingergrrl]

Lets see what Dr David Kem comes up with in the next year or so. He's helping create a decoy drug to block the antibodies to receptors found in POTS. Either it will work or it won't.

I agree and this will be really interesting! Do you know how close Dr. Kem is to releasing this info?

 

[Strawberry]

(From Cort's article-
(2) Reduced Oxygen Uptake
Because Systrom has the ability to measure blood oxygen levels prior to and after the muscles have used it up, he can tell how much oxygen the lungs are taking in and how much is left over after the muscles have taken it. He’s finding that the blood oxygen levels in ME/CFS patients’ veins are simply too high; i.e. not enough oxygen is being taken up by their muscles when they exercise. The oxygen is in the arteries, but the muscles are not taking enough of it up. That’s a big clue.

A few weeks ago my allergy Dr had me take a short walk (less than two blocks) outside to test my blood oxygen. Even though I was losing my train of thought (difficult to answer the nurses questions about my daughter!) and was sucking air like I had just ran a race, my blood oxygen in my finger stayed at 98% the entire time.

Do I fit this study??

(I could also post a story from almost 30 years ago where a doctor said I was a scared hyperventilating rabbit running around in a panic all the time, but that belongs in another thread I guess)

 

[Lynn]

Mestinon is a prescription acetylcolinesterase inhibitor (not a beta blocker). Huperzine A is an OTC version that is freely available and probably just as effective.

I tried Hupersine A. It made me feel awful (can't remember the symptoms though:thumbdown. If I was sensitive to that, does it mean I probably won't tolerate Mestinon?

Lynn

 

[perrier]

sounds really positive I wonder if the drug he's using Mestinon has been tested at Stanford

Be careful. Mestinon is not nirvana. Many CFS doctors have been using it for at least 10-15 years. It can make one very sick. It did my daughter.

 

[perrier]

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.

Yes, I'm very interested in this point. Because, someone correct me if I'm wrong, but autoimmune illnesses can't be cured. Look at MS lupus RA.

I sure hope CFS isn't autoimmune. Any thoughts?

 

[Manganus]

Yes, I'm very interested in this point. Because, someone correct me if I'm wrong, but autoimmune illnesses can't be cured. Look at MS lupus RA.

I sure hope CFS isn't autoimmune. Any thoughts?

It may be correct. But I, personally, much prefer a situation where ME can be diagnosed and explained.
If the inner workings of this syndrom can be understood and explained, it gets so much easier to find the best treatments.

 

[NelliePledge]

First time I've seen any mention of Mestinon whereas I have seen a few other medications mentioned so surprised you reckon it is used by many doctors. Of course no medication in the UK anyway so it isn't something that's I'm likely to be trying. I was interested in it as not heard of before and wondering whether it was one of the existing medications that Dr Ron Davis and OMF are testing on ME/CFs cells.

 

[Learner1]

Yes, I'm very interested in this point. Because, someone correct me if I'm wrong, but autoimmune illnesses can't be cured. Look at MS lupus RA.

I sure hope CFS isn't autoimmune. Any thoughts?

Er... the general belief at the OMF Symposium was that it is autoimmune.

I have seen Hashimotos antibodies go away with nutritional intervention. And, I believe that the benefit of Rituximab etc is for autoimmune antibodies to go away... or am I missing something?

 

[perrier]

It may be correct. But I, personally, much prefer a situation where ME can be diagnosed and explained.
If the inner workings of this syndrom can be understood and explained, it gets so much easier to find the best treatments.

My concern is there are no treatments for autoimmune diseases: MS lupus etc

 

[Learner1]

First time I've seen any mention of Mestinon whereas I have seen a few other medications mentioned so surprised you reckon it is used by many doctors. Of course no medication in the UK anyway so it isn't something that's I'm likely to be trying. I was interested in it as not heard of before and wondering whether it was one of the existing medications that Dr Ron Davis and OMF are testing on ME/CFs cells.

Be careful. Mestinon is not nirvana. Many CFS doctors have been using it for at least 10-15 years. It can make one very sick. It did my daughter.

One must be careful with these drugs. If you have a problem it can solve, great. But it doesn't sound like its for everyone...

Pyridostigmine exerts its effects by competing with acetylcholine for its binding site on acetylcholinesterase. By interfering with acetylcholine enzymatic destruction, pyridostigmine potentiates the action of acetylcholine on both the skeletal muscle (nicotinic receptor) and the GI tract (muscarinic receptor).

Pyridostigmine also can stimulate cholinergic responses in the eyes (causing miosis) if directly applied. Different muscle groups exhibit different levels of response to anticholinesterase agents, and doses that produce stimulation of one muscle group can cause weakness, through overdose, in another.

Specific responses to cholinesterase inhibitors include: increased skeletal muscle tone (nicotinic); increased gastric motility and GI tone (muscarinic); bradycardia (muscarinic); ureteral constriction (muscarinic); stimulation of the sweat and salivary glands (muscarinic); and constriction of the bronchi (muscarinic). There is also some evidence that they have a direct action on skeletal muscle.

 

[Manganus]

My concern is there are no treatments for autoimmune diseases: MS lupus etc

There are treatments, although not necessarily a cure.

 

[Jesse2233]

Better autoimmune than a virus with no antiviral or permanent brain damage

 

[adreno]

I tried Hupersine A. It made me feel awful (can't remember the symptoms though:thumbdown. If I was sensitive to that, does it mean I probably won't tolerate Mestinon?

Yes.

 

[alex3619]

Do I fit this study??

You might. This is about distribution of oxygen in large part, not just the oxygen concentration. Its very difficult to be sure of much right now, we need more data, and I have not read a paper on this yet. If the oxygen does not reach the tissues needing it then pushing those tissues will lead to problems.

Its fair to say that the evidence so far suggests these findings, presuming for now they are correct, are not the whole story.

 

[TrixieStix]

My concern is there are no treatments for autoimmune diseases: MS lupus etc

"There are more than a dozen disease-modifying treatments approved for use in MS...."

https://msfocus.org/Treatments-for-multiple-sclerosis.aspx

There are also some treatments for Lupus available.

"2011 saw the U.S. Food and Drug Administration’s (FDA) historic approval of BENLYSTA® (belimumab) for systemic lupus erythematosus (lupus), launching the first safe and effective treatment for lupus in more than half a century."

http://www.lupusny.org/about-lupus/lupus-treatments

 

[abc123]

Cell Trend lab in Germany and you can send the blood from anywhere in the world although easier from Europe than the U.S. Some will say it is not a valid test but I believe it is as does my doctor.

Thanks for mentioning this lab.

http://www.celltrend.de/cfs-diagnostics.html

Were test results informative for you, or others with ME/CFS, do you know...?

 

[Gingergrrl]

Were test results informative for you, or others with ME/CFS, do you know...?

They were definitely informative for me b/c I learned I was positive for 7 of the 9 autoantibodies and this helped my doctor confirm that I have "Autoimmune POTS" and helped (along with other autoantibodies) to get insurance auths for treatments.

 

[gregh286]

Even postive results for these. Is there a treatment plan for these antibodies.???
http://www.celltrend.de/cfs-diagnostics.html

 

[Jonathan Edwards]

My concern is there are no treatments for autoimmune diseases: MS lupus etc

There are lots of treatments for autoimmune disease and in the last ten years we have identified treatments that keep people completely well for many autoimmune diseases. Some autoimmune diseases, like immune thrombocytopenia quite often go into permanent remission and more often after treatment. Lupus frequently settles after an initial stormy period and with current drugs getting lupus patients staying well until the disease fades away (as it often does in mid life) is a very achievable objective. There will be further major advances over th next few years.

 

[Gingergrrl]

Even postive results for these. Is there a treatment plan for these antibodies.???
http://www.celltrend.de/cfs-diagnostics.html

There is not a treatment plan for these autoantibodies per se (that I am aware of) but they helped to form an overall picture of autoimmunity in my case which helped guide my doctor in his treatment plan for me and helped with insurance Auths.