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Myelin Sheath Damage?

Discussion in 'Neurological/Neuro-sensory' started by JAH, Jun 13, 2014.

  1. JAH

    JAH Senior Member

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    Hi Everyone,

    I've been having a lot of neurological problems, (neuropathy, autonomic neuropathy, multiple radiculopathies, vestibulopathy, terrible balance) and a friend asked if I had myelin sheath damage. I have no idea, but was wondering if myelin sheath damage, or demyelination has ever been detected in CFS or ME.

    Thanks,

    JAH
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @JAH

    I'll paste in something that Rich wrote on this--it was posted in the Yahoo Group called CFS Yasko on May 10, 2008

     
    Helen and JAH like this.
  3. alex3619

    alex3619 Senior Member

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    I don't think myelin sheath damage has even been proven in ME or CFS. However there is evidence of something going on, and lesions, and I think evidence suggestive of myelin sheath damage. We await a good study to prove it.
     
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  4. Daffodil

    Daffodil Senior Member

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    there is evidence of brain shrinkage in CFS, which would make sense. however, everyone who goes into remission says that they are sure their brain works as well as before...so I suspect the loss of brain tissue is negligible or at least would not be too noticeable. also, the brain can form new connections and compensate for any damage that may have occurred due to our sort of disease.

    There may be some ways to protect neurons while we are sick...but I would have to research this.
     
  5. Helen

    Helen Senior Member

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    FWIW I was diagnosed with ME and neuropathy (and later with Lyme). I was tested with EMG and ENG to search for myeline damage and/or axonal damage.
    There were no myeline damage, but I had axonal damage wich could be explained by the Lyme diagnose - or something else.

    @JAH, were you properly examined for Lyme and B12 deficiency?
     
    JAH likes this.
  6. JAH

    JAH Senior Member

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    Hi Helen,

    I had a VNG and EMG. VNG was negative, EMG showed neuropathy, multiple radiculopathies, ataxia and myoclonus, which he thought was consistent with a possible motion disorder. If I had myelin sheath damage, would the EMG have found that?

    Also had positive tilt table test, diagnosed with POTs.

    Really having a lot of problems I never have had - muscle spasming, dizziness, balance problems (abnormal platform balance test), neck pain (pinched nerve), headache, great difficulty concentrating, writing, weakness, flushing after eating, dry mouth, trips to the ER.

    I have been tested for Lyme many times, and one (igenex) was positive. So I have one doc thinks it's Lyme disease causing neurologic damage and another (Montoya) who thinks it's herpes virus that is doing it. I don't know what to do - really scared of IV antibiotics, which Lyme doc is proposing.

    I'm not sure what you would consider "proper" b12 test, but taking b12 has had no effect on me.

    Thanks to everyone who responded.

    JAH
     
  7. JAH

    JAH Senior Member

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    Here is a list of symptoms in people with demyelinating disease, I think many of us suffer from these problems.

    • Ocular paralysis
    • Impaired muscle coordination
    • Weakness (muscle)
    • Loss of sensation
    • Impaired vision
    • Neurological symptoms
    • Unsteady gait
    • Spastic paraparesis
    • Incontinence
    • Hearing problems
    • Speech problems
    From Wikipedia
     
    Wayne likes this.
  8. maryb

    maryb iherb code TAK122

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    @JAH
    have you thought about a herbal protocol for Lyme, Cowden, Buhner are just 2.
     
    JAH likes this.
  9. Helen

    Helen Senior Member

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    Hi JAH,
    I am sorry but I don´t know what VNG means. Could you please explain?
    EMG just shows if there is axonal damage, as far as I got it from a professor of neurology

    I´m on oral antibiotics and would gladly be on IV antibiotics to do all I could to get rid of the terrible bugs. Maybe you can get inspired by people here to get over the fear for the IV antibiotics. I would at least talk to the Lyme doctor to get a course of oral antibiotics to start with. I get so much better when I´m on it and then relapse when I am off, as so many of us do. I think that an oral course of abx could help motivating you for a more optimal treatment, but I don´t know your reasons for fear of it. It would probably help with many of your symptoms too.

    The latest book by Dr. Richard Horowitz is very informative if it is possible for you to read due to the cognitive problems.

    Are you sure that you took high enough doses of methylcobalamin and also folates? As you might have read here, some people need huge doses to get an effect.

    Dry mouth could be a symptom (often together with dry eyes) that the facial nerve is affected. That´s rather common with Lyme. And I think all your other severe symptoms have been described as possible Lyme symptoms (including POTS) . That does of course not exclude other reasons to your symptoms. At least you had a positive Lyme test... just my thoughts. / Best
     
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  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Most patients seem to have an easier time on IV antibiotics as opposed to oral (saves the gut)--though oral is a way to dip your toes in.

    If you could get the Infectolab's LTT test, that is one of the newest and best tests for Borrelia. A very clear positive might be a step toward deciding what treatment would be best at the moment.

    Sushi
     
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  11. JAH

    JAH Senior Member

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    Hi Maryb,

    My doctor has suggested herbs for Lyme, but I have been resistant, mainly because I just don't think they'll work. You know, when you've just taken so much stuff that does nothing...
    Thanks for your input, J
     
  12. Tammy

    Tammy Senior Member

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    I believe that I had myelin sheath damage. CFS specialist did a blood test that showed I had myelin antibodies. I have a level of numbness where I cannot feel things the way I used to.............it's as if I have some kind of covering on my skin........it's not a complete numbness as I can feel hot and cold...........it's just that the feeling is "muted".......very hard to describe.
     
    JAH likes this.
  13. JAH

    JAH Senior Member

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    Hi Helen,

    A VNG is similar to an ENG, which I just looked up myself! It's a vision test, dizziness test, pumps hot and cold air into your ears to see if dizziness caused by ear problem. That was negative, but platform balance test did suggest vestibulopathy, so some inner problem might be there.

    I've done two course of oral,antibiotics and they were so terrible, fatigue was ten out of ten, bedridden, nauseous that the idea of IV abx really makes me nervous. And I'm not sure I have Lyme! I just did new test pcr for Lyme and it was negative. My neurologist looked at my blood tests results, ordered by Dr. Montoya and said "your immune system is crazy." He thinks positive Lyme test could have been from over active immune system. It's just so tough with Lyme, no knowledge of a tick bite, no rash, negative blood tests, negative spinal fluid, still doesn't rule it out...thanks so much for your feedback, JAH
     
  14. JAH

    JAH Senior Member

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    Hi Sushi,

    I just had the Milford medical labs lyme test, have you heard of it?

    http://www.dnalymetest.com/

    Thanks for the info on Infectolab, name out of a b movie from the 50's...J
     
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  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I didn't know about the Milford lab--sounds like a good test. Infectolab is in Germany so the name may not translate well: http://www.infectolab.de/index.php?id=51&L=1

    You mentioned herbals for Lyme--I am doing a combo of abx and Cowden herbals for Bartonella. The herbals seem stronger than the abx :confused:. The combo seems to be working for others.

    Sushi
     
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  16. JAH

    JAH Senior Member

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    Thanks for the tip...J
     
  17. Helen

    Helen Senior Member

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    [quote="JAH, post: 472403, member: 465"...I've done two course of oral,antibiotics and they were so terrible, fatigue was ten out of ten, bedridden, nauseous that the idea of IV abx really makes me nervous. And I'm not sure I have Lyme! I just did new test pcr for Lyme and it was negative. My neurologist looked at my blood tests results, ordered by Dr. Montoya and said "your immune system is crazy." He thinks positive Lyme test could have been from over active immune system. It's just so tough with Lyme, no knowledge of a tick bite, no rash, negative blood tests, negative spinal fluid, still doesn't rule it out...thanks so much for your feedback, JAH[/quote]

    Sorry to hear about your hard experience with oral antibiotics. IF you have Lyme it could be a Herxheimer reaction that tells that the abx is working fine, too good... (but another dosing could work) and you surely know this alreday. Another fact, often neglected, is that gene defects in the Phase I and Phase II detox system in the liver can cause trouble with certain medications as Erythromycin, Rifampin a.o. due to altered enzyme activity. So it might be worth looking closer at what kind of abx you got and for how long time a.s.o. If you had Herx.. reactions, treatment could be pulsed according to Dr. Horowitz and others.

    After many negative or confusing lab tests (lumbar puncture, Infectolab´s test a. o.) suddenly , after oral abx, my IgG and IgM where extremely high and my symptoms got really bad, so I finally got a diagnose. Just an example of a confused situation for a long time that cleared out. I do hope that things will be clear to you too about your symptoms as soon as possible. So frustrating not to have a diagnose.
     
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  18. Hanna

    Hanna Senior Member

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    As Helen says, perhaps you had an herx reaction with your ABX trials. Perhaps you took too early too big a dose for you?
    For example, Dr Petra Hopf Seidel aims for a 200 mg minocycline dose per day. But she advocates taking 50 mg at the beginning and titrating up the dose by 50 mg a week, so it takes a month to get to the full dosage... if everything is OK. (after one month, I am on 150 mg only, but tolerate the drug so far).

    Dr Horowitz indeed in his book (how can I get better), provides a very long questionnaire to evaluate your "chance" of having Lyme disease (according to the area you are living, your activities etc...and symptoms), perhaps it would be worth to do this self-evaluation in order to get an idea about the Lyme thing...
     
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  19. alex3619

    alex3619 Senior Member

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    So far as I am aware, none of an ENG, an EMG or a VNG can show myelin sheath damage. Autoantibodies are probably better. What an EMG does is look for nerve conduction, and a failure there is inferred to be myelin sheath damage, but it does not have to be. ENG or VNG looks for neurological impairment in the brain, but again its inferred damage - it does not tell you what it is from. It is in the brain and the spinal chord that lesions have been found on autopsy. Autoinflammatory processes, or infections, could easily induce similar dysfunction. So might hypoperfusion.

    I have had muscle nerve conduction studies, which appeared to be normal. However they are testing for generalized nerve failure, manifest in peripheral muscles.

    I am not an expert on this, but I suspect that such myelin sheath damage is found by extensive electron microscopy and biochemical work on biopsies, which for spinal nerves and brain would have to be post mortem.

    I know of only one case where this was done on a living person, and that person already had substantive brain damage, and massive viral infection was found in the biopsy - but I don't think this was an ME patient, and it was in the 90s.
     
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  20. alex3619

    alex3619 Senior Member

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    I have a suspicion, which I cannot prove, that most "Herxheimer" reactions are NOT Herxheimer reactions. Again, we infer the cause from the symptoms, but there are other causes. I suspect that some antibiotics for example can act as mitochondrial poisons.

    However I suspect it is more likely to experience a real Herx reaction from oral antibiotics rather than IV antibiotics.
     

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