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LizaJane · 11-25-2008, 12:41 PM

The moral of all this, Cycleops, is that it seems wise to always have an LLMD on board. If a LLMD thought your pn was from lyme, and that another coures of antibiotics was going to help stop any advance of it, I'd go for it. I know the CSF is RARELY positive, even in late lyme. The organism just doesn't persist there, and antibodies are hard to locate. So I have learned that a negative csf does not rule out cns lyme. And also, because we all know that peripheral nerves do regenerate, once whatever is killing them is removed, it could be that more antibiotics would halt your pn, and make it possible to regenerate. Just a thought. I'm not an expert on this stuff....only at the very beginning.

But I don't know that the amoxicillin would have gotten it. It's not one of hte drugs of choice, as far as I know. Perhaps someone else knows better---it wasn't mentioned to me.

My thinking as of today: One cannot have "idiopathic" peripheral neuropathy in the face of a diagnosis of past or current lyme disease. One must attribute the neuropathy to the lyme, and treat accordingly. If the neuropathy progresses, the lyme is likely inadequately treated. Also, it is unlikely that a person has both Sjogren's and Lyme. While possible, it's more likely that the symptoms attributed to sjogren's are due to inadequately treated lyme. The importance of thinking in this manner is that both idiopathic neuropathy and sjogren's are serious diseases without good treatment. On the other hand, Lyme is treatable. It may be difficult to treat adequately, but it worth the try with a LLMD.

Quote:

Originally Posted by cyclelops

Liza

I would expect that my Igenex panel would have been positive, as I had a physician at a large clinic examine me at the time I had Lyme. He called in the entire staff to look at my EM rash. Stating, "Now, ladies and gentlemen, this is an EM rash. This is Lyme." I had blood drawn and my titer was rising.

I was given amox. 500mg 3x per day for 20 days. I don't think that was sufficient.

Later, in 2000, I saw a LLMD, and he ran the Igenex test, and also interestingly a T cell count, of Natural Killer Cells....mine came back extremely low ( common in Sjogren's). He gave me some orals, and after 6 months, I considered myself pretty well sterilized.

I never got IV.

Does my current PN relate to Lyme? I don't see why not. It is unprovable, so it isn't pursued.

In 2004, I had CSF drawn, the biggest sample this neurologist ever took, and....they did PCR, and found no DNA from Borellia Burgdorferi. An infectious disease specialist did this stuff. It came back clean.

Case closed....a cure so to speak.

The question is, did it alter the immune system??? Is what I have Post Lyme? It behaves much like a prolonged, subclinical Gullian Barre. It responds to IVIG. PN is documented to occur after Lyme in a Post Lyme Syndrome, so is Dysautonomia.

I have been under the care of a good tertiary clinic and been to Hopkins. No one found my Igenex lab work worth pursuing. I have the postive bands specific to Lyme, tick bite, EM rash, physician diagnosis at the time of the disease. I know the day I scraped off this tiny teenie 'scab' off the back of my thigh, thinking 'Where did this come from?"

Would I like to try some low dose antibiotics?? Yes. I would not tether myself to any long term IV antibiotics, and that seldom happens anymore. It does not happen around here. Insurance companies will not pay for IV treatment in cases like mine. If you come in fresh, with Bell's Palsy or some other huge neuro finding....you'll get IV for up to 6 weeks.

However, one thing that is very important.....be careful with steroids. If that bug is hiding somewhere...steroids don't help. I had steroids for my neuropathy and it was a big mistake.

I think Lyme may be a bit like strep. It goes away eventually, but it leaves havoc in its wake.

Since you have not been treated, you should pursue your positive finding, and hopefully you can get treatment. A positive titer is not indication of active disease. I would insist on IV if you can get it.

I still have positive titers for rubella and varicella (chix pox) and I had those as a kid, so many physicians will tell you, 'Yep, you had it but it is gone now. Your body did a good job defeating it'

Lyme is a very unpopular subject with physicians. My neuro admits, what is going on with me, could be related to Lyme. I do have a spinal injury that is inaccessible, TBI and Sjogrens. It is a tangled web.