• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Myelin Sheath Damage?

JAH

Senior Member
Messages
497
Location
Northern California
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
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@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

Re: Remyelination

It is known that methylation is necessary to synthesize myelin basicprotein, which is important in the formation of myelin. It is known that myelin is important for promoting rapid transmission of nerve impulses. As was pointed out by Dr. Gudrun Lange in the brain sessionat the IACFS meeting in January, 2007, the most well-founded observation on abnormality in brain function in CFS is a slowed processing speed.

I think it is reasonable to suspect that the slowed processing speed in CFS is caused by defects in the myelin sheaths on nerve axons, and that these defects result from normal wear and tear, which is not repaired because of insufficient synthesis of myelin basic protein, secondary to the partial methylation cycle block. This last statement is, again, an unproven hypothesis.

So what are the long term prospects for correcting these problems? We have no experience to look at here, so all I can do is to theorize based on what I believe is well established.

First, it would seem to be important to stop the excitotoxicity damage process. Dr. Yasko has suggested a number of supplements in her Phase I that may help with this. It seems that it would also be important to restore the methylation capacity. That's what Dr. Yasko's step 2 and the simplified treatment approach that I have suggested (with Trina's help) are intended to do. So I think these things are important first steps.

Then, it would seem to me that if there are living neurons that are lacking well-constructed myelin sheaths, this should be correctable. In the brain, the myelin sheaths are formed by cells called oligodendrocytes, which collapse and wrap themselves around the axons, sort of like a jelly roll. I suspect that the myelin basic proteins are used to fasten this "jelly roll" together. In the peripheral nerves (outside the brain), the same sort of thing is done by Schwann cells. Though I have not looked into this in detail, I suspect that these cells are capable of repairing the myelin if they have what they need to do it, including healthy methylation. Dr. Yasko's step 3 is aimed at helping remyelination.

Now, what about the decrease in the neuron population due to excitotoxicity? Again, we don't have much experience to go on, but I will just note that brain size has not been found to correlate well
with intelligence. As I understand it, it is not so much dependent on the total number of neurons, but on the degree to which they are interconnected, forming neural networks. So it would seem that to repair this kind of damage, there might be two possible courses of action. One would be to try to increase the interconnection of the remaining neurons, while the other might be to try to form new neurons. I'm not sure how the first could be done, but I would think that supplying the brain all the raw materials it is known to need, together with exercising the brain (such as by "brain teasers" or puzzles, or memory exercises) might help.

There are some particular supplements that are supposed to help brain function. I haven't looked into the details of them, but I can tell you that I have personally experimented with Cognitex, which is sold by the Life Extension Foundation. It has several ingredients, so it isn't possible to say which one or ones are producing effects, but I can say that I can tell a difference in how my brain works when I take this supplement. In particular, when I awaken in the morning, I can tell that my brain is more active, in terms of thoughts that pop up, than when I don't take it. Note that I am not recommending this supplement for CFS, because I don't know what its effects would be in CFS, but I
am just pointing out that there may be some possibilities in the supplements that are claimed to help the brain. People must proceed cautiously and under the care of a doctor if they are going to try such
supplements.

In regard to developing new neurons, Prof. Richard Deth has suggested to me that the reason neurons normally have long lifetimes and are not replaced is that removing and replacing neurons would break these interconnections, on which memory and other brain functions depend. He shared with me a paper in which it is suggested that the redox potential in cells determines whether they will proliferate or not, and he suggested that the neurons normally operate at a more oxidizing redox potential than other cells that are periodically replaced, and particularly at a more oxidizing potential than cancer cells, which proliferate out of control.

So perhaps there might be a way to make the redox potential in the neurons somewhat more reducing (but not too much so!), and perhaps nerve growth factors might be another thing to look at. Note that I'm just speculating here, but I just want to note that there might be some possibilities.

I guess that's all I have to say at this point, but I just want to urge you not to lose hope about your long-term brain function. Once the damage processes are stopped, it does seem that there are some possibilities that could be explored.

Best regards,

Rich
 

Daffodil

Senior Member
Messages
5,875
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.
 

Helen

Senior Member
Messages
2,243
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

Senior Member
Messages
497
Location
Northern California
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?

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
 

JAH

Senior Member
Messages
497
Location
Northern California
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
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@JAH
have you thought about a herbal protocol for Lyme, Cowden, Buhner are just 2.
 

Helen

Senior Member
Messages
2,243
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

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
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
...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....
JAH

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
 

JAH

Senior Member
Messages
497
Location
Northern California
@JAH
have you thought about a herbal protocol for Lyme, Cowden, Buhner are just 2.
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
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
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

Senior Member
Messages
497
Location
Northern California
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
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
 

JAH

Senior Member
Messages
497
Location
Northern California
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
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
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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

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
 

Helen

Senior Member
Messages
2,243
[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.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
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...
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.