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.

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.

My LLMD was seen before I knew I had PN, and if I had taken the full dose of flagyl he gave me.....my PN would be abysmal. There is no way any organism could survive the slew of stuff I got, tetracycline, amox, Zith, flagyl, etc. I puked for months, not to mention the other end. Now my LLMD does something else. Do I blame him...nah, not after the Feds raided his office. The Feds are on the case of LLMDs like crazy. Insurance refuses to pay for IV. Doctors are simply not interested unless you come in acute.

My mainstream docs admit, part of my problem could be the result of the old infection.

My current research neuro agrees that BB causes PN. The theory is like strep, causes rheumatic fever, like Polio causes Post polio.

After 15 years, I no longer have active infection. I have antibodies to prove that at one time I had active infection, just like the rubella and varicella. CSF was examined for PCR, that is the polymerase chain reaction to see if there is any trace of DNA from the organism. They did it on blood too. They could not find any DNA traces left.

That said, I don't see why it can't hide in tendons, cartilage etc. No one biopsies those.

We have no LLMDs close by. I had to travel 1,000 miles, and pay in cash.

Your case is different. I don't know what bands you have positive, when you got sick etc. Pursue it, for sure. You may be active.

I am a 'chronic lymie'. I live in an endemic area.....where I got this in '94 was more like pandemic.

I think if many people were tested by Igenex they would find many more cases. Most labs do only IgG response, totally ignoring that a female has a different immune system, our IgM system is more active. Why? We carry a fetus. The differences between male and female immune function is evident yet tests are based on male immune functions. 8% of those on heart transplant lists test positive for BB. I have an enlarged LA, which is 'not that important' to the cardio.....I dunno, makes me feel lousy.

Igenex does do a more thorough job than the one size fits all tests....however, try telling docs this. Most won't touch Lyme with a ten foot pole and I live in a state where we have tons of Lyme. I should have been more proactive and insisted on IV back in '94.

The germ has many different forms and it is hard to bust.....but, I think, at this point, it is moot for me. My immune system is messed up, which Lyme does. It is notorious for messing up the immune system.

My dogs get better surveillance and care for Lyme than people do....every year they get tested. My veterinarian is appalled at my situation. They can't treat me tho.

PS--If my Lyme is active, I've probably had it for 15 years, and in the cns. So who knows?

Oh, I think it is possible to have Lyme and Sjogrens. I may have had Sjogren's prior to being 'ticked'. I have a number of conditions that cause PN. IVIG has totally done away with numbness, which was profound. I would be the first one to say Lyme caused this mess. At this point, they won't do anything for me.

I know the exact dates of my Lyme, it is on record...I even recorded my temps etc. I don't think they killed it at the time....however, later, they had to have done away with it. By then, I had symptoms of PN and didn't know it.

1994 was a Lyme epidemic. That was when I got it. I lived in an area dripping with ticks. I would pull 20-30 wood ticks off my dogs. Never saw a deer tick there tho. Once we went for a picnic and saw smaller ticks....duh we thought they were 'baby ticks'. I probably got mine sitting on the couch, probably a tick brought in by a dog. Never saw it. Deer ticks are the size of a pin head.

If you have had Lyme for 15 years, it will be interesting to see what comes back on PCR testing. Also are they going to treat you with IV? Is your IgG positive? They give more credence to the IgG.

I assume assays done at other places were negative (as were mine).

I agree that there is no idiopathic PN. I don't know where you live...I hope it is out east. That is where you can get treatment.