This is topic Help me understand Lyme demyelination... in forum Medical Questions at LymeNet Flash.

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Posted by Neville (Member # 5890) on :
Is it always thought to be an autoimmune process,

or is there something else more directly at work

(could spirochetes be chewing on my nerves)?

As I stated in another post, I have a diagnosis

of CIDP based on a nerve conduction test.

I am currently treating with a pulsing regimen of

4 antibiotics and low-dose naltrexone.

I've been slowly increasing the LDN to eventually

reach 4.5mg. Currently at 2mg for a couple weeks

now. Symptoms got much worse at this dosage but

I'm hanging on to see if things eventually

improve. In theory, if the CIDP is an autoimmune

reaction, the LDN could help moderate it.

I have had Lyme disease for at least 9 years.

Was misdiagnosed, sick for several years

untreated, treated for a couple years, got much

better, got by without abx for several years and

now have this trouble.

I appreciate any input.
Posted by Pinelady (Member # 18524) on :
Lyme can become latent like its cousin Syphilis.

And as such can reemerge later. I would say it

would be best to see a LLMD to treat again. I think

many are now thinking we require a maintenance dose

to keep it in check.
Posted by Neville (Member # 5890) on :
Yes. I currently see Dr. J in SC. He has me on

a pulsing regimen of 4 different antibiotics plus

the naltrexone (which I requested and he said


I have no doubt that Lyme is the root cause of my

troubles now, but the question is, is it due to

active Lyme infection or autoimmune problems

brought about by being infected so long and

having spirochetes or pieces of them still in my

tissues. It would seem to make a difference in

treatment strategy. My WB is now negative. Not

that it means anything.
Posted by Pinelady (Member # 18524) on :
I think if you just started meds and tested before that I would still say active borrelia knowing how syphilis behaves from the cyst form.
Posted by lou (Member # 81) on :
Lyme can have persistent infection with autoimmune markers at the same time. Persistent infection, especially when there are multiple pathogens, are thought by some to cause autoimmunity. Some people who have been successfully treated for the infection(s) alone, have lost the autoimmune markers.

And lyme spirochetes can invade and kill neurons, which presumably can cause various neurological syndromes, including demyelinating.
Posted by seibertneurolyme (Member # 6416) on :
From a slightly different perspective -- lyme and babesia both love choline which is one of the good fats that protect the myelin sheath.

Hubby tested positive for anti-myelin antibodies by bloodtests numerous times. He has 4 or 5 white matter brain lesions. Has never had any nerve pain. His primary symptoms have always been a Parkinsonsian tremor and G.I. issues. His one EMG was normal.

His central nervous system seems to be affected much more than his peripheral nervous system. I think this is primarily because of a prior issue with mercury toxicity which obviously weakened the blood-brain barrier.

It is my opinion that 99% of the time there is still an active infection. Otherwise I would expect the "cure" or remission rates for IV IgG to be much higher -- per patient accounts it seems to be effective less than 50% of the time and that is even when it is combined with antibiotics.

If there is no active infection then antibiotics would have no effect other than toxicity-wise.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert
Posted by Janice70 (Member # 16319) on :
So is choline a good nutrient to take?

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