1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Myelin Sheath Damage?

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

  1. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,518
    Likes:
    9,659
    Amersfoort, Netherlands
    Only certain infections, primarily involving bacteria with spirochetes, produce the relevant toxins as they die, so those should be the ones creating herx reactions.

    I'm certainly having some reaction, starting 5 days after beginning IV antibiotics for Lyme. I felt great the first 4 days, probably due to the IV fluids, and with no side-effects, which would seem to suggest that I'm not reacting directly to the antibiotics. It's an odd combination of feeling better in some ways and worse in others - like a healthy person with a nasty flu, instead of an ME patient.
     
    Helen likes this.
  2. shah78

    shah78 Senior Member

    Messages:
    143
    Likes:
    83
    st pete , florida
    @JAH .You've just described Methylation issues. I'll go with Freddd here (as always). B12 will fix it, even if you don't have the problem:)
     
    JAH likes this.
  3. Helen

    Helen Senior Member

    Messages:
    538
    Likes:
    539
    I had an ENG and an EMG at an university hospital and was told by the doctor that the tests differed between myeline and axonal damage. ENG is supposed to show myeline damage and EMG axonal. FWIW.
     
    Last edited: Jun 15, 2014
    JAH likes this.
  4. alex3619

    alex3619 Senior Member

    Messages:
    7,498
    Likes:
    11,989
    Logan, Queensland, Australia
    I don't think the science is clear on this. I could be wrong. Loss of the myelin shealth will produce a different result to axonal damage, I think the docs are right on that. What is not clear is the impact of, for example, immune derived inflammation, or infection derived inflammation, or hypoperfusion. I very much doubt this has been researched, but if anyone has I link to good research in this area I would be interested in reading it.
     
  5. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    I will check out his book - really need to decide whether or not to start treatment for Lyme . I have a lot of doubts as to whether I really have it, tests have be been equivical, and feel I most likely have an immuno- neuro disease that fit more into a cfs/me model.
     
  6. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    I didn't know there were tests for myelin sheath antibodies. I will definitely ask my neurologist about those. I did have a GAD blood test, which he felt would be positive given my hyper active reflexes, but was disappointed when negative.
    Thanks Tammy, JAH
     
  7. adreno

    adreno 3% neanderthal

    Messages:
    2,457
    Likes:
    1,726
    Tundras of Europa
    http://www.ncbi.nlm.nih.gov/pubmed/23328769

    Examples of NRF2 activators are turmeric and resveratrol.
     
    JAH likes this.
  8. Tammy

    Tammy Senior Member

    Messages:
    354
    Likes:
    285
    New Mexico
    JAH...........The CFS specialist that I went to was an immunologist and ran lab tests that most Dr.'s including neurologists were not familiar with. I know my neurologist had never heard of such a test...........which seems really weird to me.
     
    JAH likes this.
  9. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    @Tammy, thanks. Will ask immunologist about this...JAH
     
  10. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    I saw my neurologist today, asked if I have myelin sheath damage and he said "you probably do", whirled around in his chair and looked up my EMG results in his computer. He said I have myelin sheath damage (nerve root damage) in my abdomen. This helps explain why I have been having muscle spasming in my abdomen. He has not been able to discern a cause. He is proposing to spinal tap me, which I first said no to, but now am thinking of it. Wants to look at Lyme, inflammation, and MS. Would add anything that my CFS doc wants. Had a spinal tap for Lyme 20 years ago and it was negative, not the most fun test...J
     
  11. Helen

    Helen Senior Member

    Messages:
    538
    Likes:
    539
    I am surprised to hear that your neurologist checked your EMG result to look for myeline damage. As of my earlier posts I was told that ENG is the test that could reveal this. I will have another ENG and EMG in a month and I will put the questions again to the doctor doing the tests.
    I have had two lumbar punctures and I think they where very valuable for more pieces to the puzzles to a diagnosis. I wouldn´t hesitate if the doctor is experienced doing LP´s. Best of luck!
     
  12. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    Helen, what showed up in spinal fluid?
     
  13. Helen

    Helen Senior Member

    Messages:
    538
    Likes:
    539
    IgG antibodies to Borrelia bacterias. No other findings excluded some other diagnosis as MS.

    Edit: It also excluded Lyme disease according to the official criterias in Sweden. ( Still my IgM in blood is increasing and I haven´t got any explanation to that yet).
     
    Last edited: Sep 25, 2014
    Valentijn and JAH like this.
  14. JAH

    JAH Senior Member

    Messages:
    277
    Likes:
    160
    San Jose
    Thanks Helen
     
  15. Strawberry

    Strawberry Senior Member

    Messages:
    105
    Likes:
    122
    Seattle, WA USA
    FWIW, I have confirmed myelin sheath damage, not specific to MS. Further testing was never completed with the doctor change, so all I know for certain is brain. But I also don't have a confirmed ME/CFS diagnosis.
     

See more popular forum discussions.

Share This Page