Myelin Sheath Damage?

[Valentijn]

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.

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.

 

[shah78]

@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

 

[Helen]

So far as I am aware, none of an ENG, an EMG or a VNG can show myelin sheath damage. ...

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.

 

[alex3619]

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.

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.

 

[JAH]

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...

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.

 

[JAH]

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.

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

 

[adreno]

Abstract
Oxidative stress is generated in several peripheral nerve injury models. In response to oxidative stress, the transcription factor Nrf2 is activated to induce expression of antioxidant responsive element (ARE) genes. The role of Nrf2 in peripheral nerve injury has not been studied to date. In this study, we used a sciatic nerve crush model to examine how deletion of Nrf2 affects peripheral nerve degeneration and regeneration. Our study demonstrated that functional recovery in the Nrf2(-/-) mice were impaired compared to the wild type mice after sciatic nerve crush. Larger myelin debris were present in the distal nerve stump of the Nrf2(-/-) mice than in the wild type mice. The presence of larger myelin debris in the Nrf2(-/-) mice coincides with less macrophages accumulation in the distal nerve stump. Less accumulation of macrophages may have contributed to slower clearance of myelin and thus resulted in the presence of larger myelin debris. Meanwhile, axonal regeneration is comparatively lower in the Nrf2(-/-) mice than in the wild type mice. Even after 3months post the injury, more thinly myelinated axon fibers were present in the Nrf2(-/-) mice than in the wild type mice. Taken collectively, these data support the concept of therapeutic intervention with Nrf2 activators following nerve injury.

http://www.ncbi.nlm.nih.gov/pubmed/23328769

Examples of NRF2 activators are turmeric and resveratrol.

 

[Tammy]

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

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]

@Tammy, thanks. Will ask immunologist about this...JAH

 

[JAH]

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

 

[Helen]

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

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!

 

[JAH]

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!

Helen, what showed up in spinal fluid?

 

[Helen]

Helen, what showed up in spinal fluid?

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).

 

[JAH]

IgG antibodies to Borrelia bacterias. No other findings excluded some other diagnosis as MS.

Thanks Helen

 

[Strawberry]

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.