[guitargal]

the more i read about lyme disease the more i wonder if that is what i have.
any one?

[aussiemom]

I think the symptoms can be similar, but the treatment is way different. There is a special blood test for Lyme, not all labs do it. That is the gold standard. Fibro, is a lot of tests to rule out something else. And there is no magic pill to fix it. There is the pressure point test that is usually used to help dx it. And to make it worse, some docs don't believe fibro is real.

I see a pain management doc. He is wonderful. He gave me my dx, and is willing to help me with meds, handicap parking permit, and a cane. A rhumey can help you with either also.

Good luck!!!

[guitargal]

Originally Posted by aussiemom

I think the symptoms can be similar, but the treatment is way different. There is a special blood test for Lyme, not all labs do it. That is the gold standard. Fibro, is a lot of tests to rule out something else. And there is no magic pill to fix it. There is the pressure point test that is usually used to help dx it. And to make it worse, some docs don't believe fibro is real.

I see a pain management doc. He is wonderful. He gave me my dx, and is willing to help me with meds, handicap parking permit, and a cane. A rhumey can help you with either also.

Good luck!!!

thanks..
my lyme came back neg last fall but my paper work does not say what test they did. western blot, elisa, there is a pcr also. spoke with dr. may run it again.

[aussiemom]

I don't know where I heard it, maybe on another forum. There is only one lab that does this highly specialized Lyme test. Its in California. And its common for regular labs to come back neg.

Do you remember a tick bite? I've known a few people in cyber land who have it. One woman has been on antibiotics for about 2 years at least, and still hasn't knocked it.

[vvector0000]

I also cannot find -anything- that is more of a spot-on diagnosis than late-stage Lyme (15 years after an episode where a friend of mine and I were camping in the backcountry during the state's worst tick outbreak [we did not know this] ever. We had to camp at least one night. It was so bad that I remember turning back the sweat band on a baseball cap and having more than a dozen in there).

It's one of those "oh 95% of those apply and 5% don't" deals.

My doctor has done all the standard rheumatological bloodwork, including Lyme antibodies which shouldn't be anywhere in my system this late on. I talked to him about the ELISA test (the special one mentioned) and he mumbled about referral to the Infectious Disease specialist and things being unresponsive to antibiotics, etc. etc. He dismissed me. The ELISA is supposed to be able to show the presence of the disease at any stage if I am not mistaken.

The cognitive effects are far, far beyond fibromyalgia and 'neurological disorder NOS', and idiopathic peripheral neuropathy. They also are continuing to get worse.

Especially interesting is the cartilage deterioration in my knees/hips and shoulders, advancing neuropathy. My knees are bad enough to get disability on their problems alone. Not RA, no tests show the slightest hint of it.

Hmm. What can we do?

Originally Posted by guitargal

the more i read about lyme disease the more i wonder if that is what i have.
any one?

[raj_malholtra]

Originally Posted by aussiemom

I don't know where I heard it, maybe on another forum. There is only one lab that does this highly specialized Lyme test. Its in California. And its common for regular labs to come back neg.

Do you remember a tick bite? I've known a few people in cyber land who have it. One woman has been on antibiotics for about 2 years at least, and still hasn't knocked it.

I think the lab you are talking about is called IGeneX. It is in northern california. My doctor used it to rule out lyme. She prefers this lab because they look at more strains than the CDC western blot.