posted
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.
Posts: 37 | From Kentucky USA | Registered: Jul 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
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
ok).
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.
Posts: 37 | From Kentucky USA | Registered: Jul 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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