Gingergrrl
Senior Member
- Messages
- 16,171
This thread is a continuation from another thread that went off topic. The quotes in this new thread are from the old thread re: neurological issues and the IOM contract. I am not on my own computer and not able to link to the old thread (hoping maybe a moderator can do that?) Tagging the posters from the old thread @zzz @Sidereal @melamine @A.B.
Thank you and this is not my experience so I suspect I am not getting too much magnesium or reacting badly to it.
My arms are incredibly weak and I get severe shortness of breath when I lift things, especially over my head. But lying down relieves the symptoms and I do not ever experience them at rest (with the exception of tachycardia in my sleep which is pure dysautonomia as far as I know) and totally different (in my case) then the severe shortness of breath that I get from exertion.
I got severe over-methylation reaction and cannot tolerate folate or B-12 but I have zero reaction to CoQ10 or D Ribose. None of them made me weaker but none have helped either.
The remaining quotes are from @zzz
I feel that mitochondrial functioning plays a huge role in my own case separate from (or connected to?) the dysatuonomia. I am temporarily staying with my parents while my husband is out of town and had to walk up three steps (no exaggeration, only three) to get to into their house and became so short of breath that I was close to taking nitroglycerin in case it was angina. I tried Nitro once and it did not help and I am not convinced that I even have micro vascular angina vs. my mitos/cells just do not function from ME/CFS.
I was deficient on this test too (not by Dr. Myhill but from my own MD) even though I take three forms of Mag.
I have been doing the Myhill protocol with the nebulizer for at least six months with no improvement (unless of course I would be even worse without it which is possible.) I just raised the dose to 1/2 tsp from 1/3 tsp and hoping this helps. My doctor confimed today he will prescribe the shots if I can get him more information about it (I assume the amount correlates to body weight?) so I will talk to you about this later by PM.
Which other meds increase the energy deficit as my doctor said a firm no re: provigil for me and I trust him on this. I cannot tolerate anything activating and get severe agitation or even akathisia from things that others tolerate (like methyl B12, Folate, Carntine, etc.)
Thanks again and hoping everyone from the prior thread finds this one!
If it makes your muscles really weak and floppy and crashes your BP even further. This is what it used to do to me.
Thank you and this is not my experience so I suspect I am not getting too much magnesium or reacting badly to it.
@Gingergrrl - In that kind of situation, my symptoms tend to be more localized - to my arms in your example, as well as contributing to overall exhaustion and PEM to one degree or another. My lung symptoms seem to have become part of low level background noise in the past year or so, but when they're more noticeable they can remain so for weeks or more and have tended to be at least as bad when I lie down as any other time.
My arms are incredibly weak and I get severe shortness of breath when I lift things, especially over my head. But lying down relieves the symptoms and I do not ever experience them at rest (with the exception of tachycardia in my sleep which is pure dysautonomia as far as I know) and totally different (in my case) then the severe shortness of breath that I get from exertion.
My weakness only got that bad if I tried supplementing something that forces energy production on a system that can't handle it, stuff you see people here frequently keeling over from, like methylfolate, methyl B12, CoQ10, D-ribose etc.
I got severe over-methylation reaction and cannot tolerate folate or B-12 but I have zero reaction to CoQ10 or D Ribose. None of them made me weaker but none have helped either.
The remaining quotes are from @zzz
This seems to be confusing, as these symptoms are due to opposite causes. @melamine also questions the role of mitochondrial function here, which is a very reasonable question, and certainly enters into the picture.
I feel that mitochondrial functioning plays a huge role in my own case separate from (or connected to?) the dysatuonomia. I am temporarily staying with my parents while my husband is out of town and had to walk up three steps (no exaggeration, only three) to get to into their house and became so short of breath that I was close to taking nitroglycerin in case it was angina. I tried Nitro once and it did not help and I am not convinced that I even have micro vascular angina vs. my mitos/cells just do not function from ME/CFS.
To the contrary, Dr. Myhill found that intracellular RBC magnesium tests showed her patients uniformly deficient in magnesium.
I was deficient on this test too (not by Dr. Myhill but from my own MD) even though I take three forms of Mag.
That is why she has stated that magnesium injections "are so helpful that it is pointless progressing onto other things without trying these first." It is due to her statements that I started magnesium by nebulizer, and have experienced great improvements over the last year as a result.
I have been doing the Myhill protocol with the nebulizer for at least six months with no improvement (unless of course I would be even worse without it which is possible.) I just raised the dose to 1/2 tsp from 1/3 tsp and hoping this helps. My doctor confimed today he will prescribe the shots if I can get him more information about it (I assume the amount correlates to body weight?) so I will talk to you about this later by PM.
NMDA agonism in and of itself does not provide lasting benefits. But if combined with treatments that address the fundamental energy deficit in ME/CFS, it can provide impressive symptomatic relief. (Provigil helped me lead a near-normal life for over eight years.) However, many people are too sensitive to tolerate any NMDA agonists at all, and for these people, such drugs can easily worsen their condition.
Which other meds increase the energy deficit as my doctor said a firm no re: provigil for me and I trust him on this. I cannot tolerate anything activating and get severe agitation or even akathisia from things that others tolerate (like methyl B12, Folate, Carntine, etc.)
Thanks again and hoping everyone from the prior thread finds this one!