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Old 11-23-2008, 10:07 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default Igenix

Yes, there's been a lot of controversy about Igenix along the way. However, they are now FDA approved, and while they believe that two different bands comprise a positive than does CDC, they report specifically when one meets CDC criteria. I think they are extremely respected by many, at this time, although people would have to have followed the literature and discover that they've pretty much won respect from CDC. They have some good articles posted.

I am aware that not every doctor will believe it matters that Igenix has a positive, but I think that infectious disease doctors, and those who see a lot of lyme, feel differently.

The most important thing moving this doctor is that I have SYMPTOMS of lyme, in addition to the titers. I think he'd treat me for lyme even if the blood tests were negative. They have a high negativity rate, and are supposed to be used to AID diagnosis, in the face of clinical findings.

So, I've had joint and nerve problems, eye problems, skin rashes, neuropathy, and cerebellar findings. Basically, there is no one illness which accounts for this other than lyme. You can try to pin it on an auto-immune disease, but nobody's ever been able to find one. I ALWAYS feel better when I'm on antibiotics. I think these are the facts leading this doctor towards treating me.

cyclelops: I'd recommend you look for an "integrative" internist. It seems they respect the symptoms as well as the labs. I've having a vastly different experience of MDs as I've been getting referred to docs who label themselves "integrative". Cyclops--do you have symptoms that are now undiagnosed? Does lyme explain them? Are you not getting treated for something treatable because the lab has a bad rep? Think about this: you might be being denied life-saving treatment.

I had this experience with my parasitologist. He's an old-timer who looks at his own specimens. He does a sigmoidoscopy, gets some stool, and then goes into his lab and looks. His rate of finding ova and parasites is a hundred times more than any lab around. From what I've seen he treats people who are not being treated by mainstream docs who only listen to quest or labcorp, or the local parasite lab, which is just as bad. His patients get better. I'm one of them. (My doctors refused to treat me for tapeworm, even when I SAW the tapeworm, because the routine lab didn't find it. Dr Cahill found it, treated me, and I got better. My mainstream docs just shook their head--maybe getting better was a coincidence. Yah, right.)

Anybody here who is considered to have idiopathic pn and has a positive Lyme test ought to think long and hard before letting anybody ignore the one treatable cause, which could lead to more illness.

I'm quite happy there is something to treat. I don't care of some doctors hold their nose. I've found some who respect the clinical picture as well as the labs.

Also, most Lyme sites use IgeneXs testing as the benchmark.

EVERYTHING I READ SAYS THAT ACCEPTED WESTERN BLOT CRITERIA MISS TOO MANY PATIENTS,

http://www.mdjunction.com/forums/lym...ing-lyme-tests

http://www.canlyme.com/flawedtest.html
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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