posted
Been symptomatic over a year and just got test results from Igenex along w/ co-infection panels, all indicating multiple ++ bands. I followed up with an infect. disease doc in nj who totally disregarded the tests because Igenex is "not certified lab". He ordered tests at Imugen that were all neg except for band 32. His conclusion is 100% not lyme. Advice??? THks so much
Posts: 3 | From new jersey | Registered: Jun 2010
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posted
I had only one positive band 41 and symptoms and was treated by an ID in NJ. He said he had no doubt I had Lyme, my primary dr says I show Lupus markers. I was actually given his name on another Lyme board. I recently got my symptoms back and he is running all new bloodwork. I guess I have to wait and see how he handles it. Right now there is no way I could afford LLMD Posts: 22 | From Pennsylvania | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Infectious disease docs are nearly always enemies of people with lyme disease. Rarely does a lymie have a good experience with them.
Why? because lyme is in the middle of a medical controversy (it is a WAR) and the Infectious Diseases Society of America (IDSA) is the one saying that lyme is RARE and easily cured.
So, all the infec disease docs say the same. They are on one side of the controversy and the lyme docs and patients are on the other side.
We know that lyme is not rare and that it is not easily treated. A total disagreement between the 2 sides.
We know that Igenex is a reference lab, which means it is better than run-of-the mill labs like Quest and LabCorp at finding lyme disease and coinfections. But, when an ID doc sees Igenex, he sees "ENEMY."
Igenex finds lyme disease where the lesser labs never do. So, Igenex is a threat to the belief that lyme is rare.
The statement that they are not a "certified" lab is just not true. These things are said because of the war.
So, since you have lyme, I suggest you avoid all infectious disease doctors and go to a lyme disease doctor instead. (The ID docs are SUPPOSED to be the docs who treat lyme, but since they insist it is rare, they won't treat us.)
Lyme docs know Igenex is the best, most reliable lab for tick-borne infections.
I was abused badly by an ID doc, as were many on this board. Just forget the experience and go to the best lyme doc you can find.
You can call your state lyme support groups (see Support Groups on left side of page) and you can post under "Seeking a Doctor" to find somebody good.
This war makes it confusing for people newly diagnosed with lyme disease. You are caught in the cross-fire, and you are the one who will suffer.
Also, a Boston TV station did a great show on lyme disease a little over a year ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
The video talks about the IDSA and their views, so it may help make some sense out of all of this for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
quote:Originally posted by chollay: I had only one positive band 41 and symptoms and was treated by an ID in NJ. He said he had no doubt I had Lyme, my primary dr says I show Lupus markers. I was actually given his name on another Lyme board. I recently got my symptoms back and he is running all new bloodwork. I guess I have to wait and see how he handles it. Right now there is no way I could afford LLMD
I had this very same test result, which I posted on this forum. If you have the symtpoms & you have at least one band positive, logic tells me you got it. I wish you well in your recovery. Don't give up....keep fighting the good fight & remain pro-active with your treatment. You are in charge of your body.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
To TF:
Thank you for making the controversy so understandable. I plan to write an article about it soon and publish online. Your way of describing the bias of ID docs is right on. Thank you for contributing such an easily understood explanation.
I was recently tested positive. ID doc has had my records for 2 working days & still hasn't given me the call back for an appt. I called a LLMD doc this morning....by 2PM had appt set up for July 6, no doc referral needed! Sad that a local doc won't help but out of town is willing.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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