Originally Posted by cyclelops

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.