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Evidence of Neurological Abnormalities in ME Suppressed in the IOM "ME/CFS" R

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 7, 2015.

  1. taniaaust1

    taniaaust1 Senior Member

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    I cant say that I know the answer but even when we aren't showing the tachycardia and low BP we still have the other things which go along with the dysautonomia such as low blood volume, so maybe its something like that leading to pain etc.
     
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  2. zzz

    zzz Senior Member

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    I originally sent my reply to @Gingergrrl as a PM in order to avoid sidetracking this thread. But as further questions have come up here on this subject, I might as well repeat my answer and also address A.B.'s question. I would suggest that further questions on this topic (which is an important one) be put into their own thread.

    Here's my answer to @Gingergrrl:

    This is just a milder form of dysautonomia than POTS, but it is still dysautonomia. In fact, the symptoms you describe are exactly what I had when I began my magnesium nebulizer treatment a year ago. The fact that magnesium gradually cured it indicates that it’s entirely neurological (for reasons that I elaborate on below).
    The answer is the basically the same as the answer to @Gingergrrl's question. To elaborate a bit more, excess noise in the NMDA receptors creates a low signal-to-noise ratio, which makes it difficult for the brain to tell what's going on. As a result, its output to the autonomic nervous system is incorrect, resulting in dysautonomia. Magnesium is the most powerful NMDA antagonist, calming down these receptors and reducing their noisiness, thereby enhancing the signal-to-noise ratio, so that the brain can once again precisely detect what's going on with the autonomic nervous system and control it properly. For this reason, proper magnesium treatment is extremely effective as a treatment for dysautonomia.

    Again, further discussions of this topic should probably go into a different thread.
     
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  3. Marco

    Marco Grrrrrrr!

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    Very interesting. We seem to have been thinking along similar lines :

    http://www.cortjohnson.org/blog/201...fs-puzzle-the-neuroinflammatory-series-pt-ii/

    Agreed.
     
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  4. melamine

    melamine Senior Member

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    @Gingergrrl
    - I've tended to consider the loss of strength in my back muscles and the kind of rapid loss of muscle strength I've experienced in other muscles when I use them to be somewhat different than the "tiredness" of my lungs, which feels like a mitochondrial issue. My tendency to breath fatigue when I'm in an extended (or even short), sustained conversation, remains, even when chest tightness and lung-centered energy are not otherwise noticeable. I don't think the cause of all of these is necessarily mutually exclusive, but I had noticed the lung symptoms worsening over time and separately from other muscle symptoms, which had somewhat improved in certain respects.

    A.B. and Sidereal have described the primary lung symptom I experience for periods of time, in conjunction with a feeling of pressure or tightness in the chest area -

    @Sidereal - you've described it well. ;)
     
  5. Sidereal

    Sidereal Senior Member

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    I agree with the general thrust of your argument but I do think that in severe and very severe ME, even though the patient has an underlying severe deficiency, magnesium supplementation can be detrimental due to muscle weakness and vasodilation.

    I would also add that Dr Goldstein spoke of the fact that if every ME/CFS case was having glutamate/NMDA excess then everyone would have a positive response to ketamine which quite clearly they do not. Some do well with NMDA agonists (though I would question whether that reflects a true improvement or just short-term stimulation / fake energy while worsening the underlying redox problem).
     
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  6. snowathlete

    snowathlete

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    This is the main immediate benefit of the IOM report in my view. Regarding validation of the IOM criteria, I agree it's needed. But if we waited for it to be validated before adopting it, by the time it was validated it would likely be obsolete as the science is moving forward. As you said in an earlier post, A biomarker changes everything.
     
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  7. snowathlete

    snowathlete

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    Not only would a larger study like that carry more weight in a review but it might be enough to trigger that review in itself.

    I think we need to focus on research full stop because that is what will ultimately take us forward, and if this is considered to be one important yet under researched area then that would certainly be one place to focus.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @zzz I agree that this needs a separate thread but don't want to create more work for the moderators! I wasn't going to respond here further either on this topic but since you guys did, I have some more questions. Also, indirectly I do think it relates to this thread as it is about neurological & autonomic stuff not being in the IOM report when these seem to be core symptoms for many people.

    I increased my magnesium dose in the nebulizer to 1/2 tsp (from 1/3 tsp) last night to see if this will help my shortness of breath and chest pressure. I still can't tell though what is autonomic dysfunction versus my cells cannot make energy at a mitochondria level when I do any exertion and therefore cannot breathe.

    @melamine Do you feel breathless as if you have run up a flight of stairs when all you did is lift a plate out of a cabinet?

    @Sidereal I do have a Magnesium deficiency on the intracellular Mag test (in spite of massive supplementation with pills, nebulizer and skin oil.) How would I know if what I am doing is detrimental due to muscle weakness and vasodilation?

    I wish I understood this part but do not retain the meaning of a lot of the words like NMDA and redox even though I have asked about them a hundred times. Maybe we could start a new thread on this topic and I apologize we shifted the topic!
     
  9. Sidereal

    Sidereal Senior Member

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    If it makes your muscles really weak and floppy and crashes your BP even further. This is what it used to do to me.
     
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  10. A.B.

    A.B. Senior Member

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    Like Sidereal I have experienced a distinct sensation of weakness in the chest. Also some chest pain and tachycardia (but only after a bronchitis). And magnesium does help - no chance of a mistake. I don't know how much I'm taking, about a teaspoon full of magnesium sulfate. I'm guessing that's about 1g?
     
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  11. melamine

    melamine Senior Member

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    @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.
     
    Last edited: Mar 25, 2015
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  12. Sidereal

    Sidereal Senior Member

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    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.
     
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  13. zzz

    zzz Senior Member

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    This is obviously a complex issue. On one hand, magnesium has clearly helped @A.B., by his own testimony, yet magnesium made @Sidereal's symptoms worse. This in itself is understandable, but then @melamine says:
    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.

    It is possible to sort all this out into a coherent picture, though, and I will attempt to do so.
    This occurs only with an overdose of magnesium - one that causes severe CNS side effects. It's important to remember that multiple studies have shown that the majority of the U.S. population is deficient in magnesium. There's no reason to believe that this is any different in other parts of the Western world, or that ME/CFS patients suffer from this less. To the contrary, Dr. Myhill found that intracellular RBC magnesium tests showed her patients uniformly deficient in magnesium. 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.

    EDIT: I should add, as I mention later, that not everyone can tolerate these injections, and that for many, the starting dose that Dr. Myhill recommends is too high. I elaborate on this in this post.

    It's also important to note that muscle weakness is often caused at least partially by magnesium deficiency, as magnesium is necessary for proper mitochondrial operation, as well as the generation of new mitochondria. Although not all mitochondrial problems are due to magnesium deficiency, without sufficient magnesium, it is impossible for mitochondria to work properly.
    Do you have a reference here? In any case, ketamine is very different from magnesium. Magnesium is required for proper neurological functioning; ketamine is not. You can live fine without ketamine (most people do), but you can't live without magnesium. Ketamine's functions are purely neurological, at least as far as we know, while magnesium plays multiple essential roles in bodily function. People can become tolerant to ketamine to the point where it's no longer effective; this does not happen with magnesium, due to its essential role in body chemistry.
    It's important to note that different NMDA agonists have different effects. For example, glutamate is the most powerful NMDA agonist. Yet no one does well by ingesting excess glutamate, such as MSG. Yet many people do well on Provigil, which is another NMDA agonist. Provigil also helps in the production of ATP in the mitochondria, which undoubtedly contributes to its beneficial effects.

    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.
    Fortunately, magnesium addresses both problems simultaneously.
    The symptoms of CNS depression and dysautonomia can be very similar, and this is where it can get confusing. The former is made worse by extra magnesium, while the latter is improved by adding magnesium.

    CNS depression is not a typical symptom of ME/CFS, and in all the cases we've been talking about, it's been caused by excess magnesium intake. So I think it's quite safe to say that breathing problems experienced by someone who is not supplementing their magnesium are not a symptom of CNS depression. In these cases, such as @A.B.'s, proper magnesium supplementation will typically help (as he found).
    One teaspoon of magnesium sulfate is 1.5 grams. The effect it has depends on the method of administration. How are you taking it?
    Due to the near universal magnesium deficiency in our population, as noted by Dr. Myhill, I think that at least some of your problem can be attributed to lack of magnesium, and that a gradually increasing magnesium therapy would be something that would be very worthwhile to try. I would expect it to help significantly.
    As I noted in my previous post, a hypersensitivity to magnesium as you have described is typically indicative of a severe magnesium deficiency. Due to the hypersensitivity of the NMDA receptors that this implies, this can result in hypersensitivity to all sorts of drugs and supplements, including all the ones you list.

    @Sidereal, as yours is a rather complex case, we should probably talk more about this via PM.
     
    Last edited: Mar 26, 2015
  14. Gingergrrl

    Gingergrrl Senior Member

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    @SOC if we start a new thread, how do I quote from the old thread into the new thread? I am temporarily not at home with access to my regular computer so probably will not figure it out!
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    That's what I figured but I am not sure how to multi-quote between threads.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Okay, I will try it and was asking the questions in order to create the new thread (to get this one back on topic) so hoping to solve this problem if I can!
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @SOC I created a new thread titled "Dysautonmia, shortness of breath, and Magnesium." I put this here so others can find it but I will send you a PM too.
     
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  18. Sidereal

    Sidereal Senior Member

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    Gingergrrl likes this.
  19. Sushi

    Sushi Senior Member Albuquerque

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    It is not something that we could do right now as there are only 2 moderators and we are up to our ears!
     
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  20. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Evidently they did exclude a lot of studies due to poor quality. Yet they did include some small studies, case-control studies, etc. And they did include some that covered sleep problems, cognition problems,
     
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