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09/27/2007 15:09
Julie4848
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your doctor would ok a private not FDA approved lab like igenex for lyme testing.

I'll give you both sides . ONE SIDE Igenex has been investigated by the department of health in California and New York several times for producing too many positive lyme results.

"New York State Health Department charged that Igenex's Lyme-disease tests had failed a series of experimental challenges .New York State officials sent normal blood samples to the Igenex lab, and received many incorrect positive results. "

Theres an article in fortune magazine March issue about igenex falsely diagnosing people with lyme ... it was focused on one man who they diagnosed with lyme, when instead he had a very serious disease.

http://www.ccmhi.org/ MistakesToAvoidBewareOfTheLymeDiseaseSpecialist.htm

The ALS foundation has received a lot of complaints about Lou gehrigs disease patients testing positive at Igenex for lyme ( and negative everywhere else) when in fact they had Lou gehrigs disease NOT lyme. .

THE other SIDE The governments approved testing does miss lyme . There is a well publicised case about a journalist Amy Tan i beleive is her name who tested negative or indeterminate for lyme with all lyme tests but igenex found her positive.... and she did have lyme and eventually got better.

IGENEX lyme testing is not recognized to be credible , by the government, most doctors and insurance companies but there is a lot of money and politics involved in getting tests approved. Who knows , maybe these test methods will be recognized someday. Obviously though they have a lot of false positives. But on the other side they may find lyme when noone else does.

Lyme may be a bigger problem than people think it is. The government is reveiwing the whole lyme issue and testing guidelines . There are flaws . Personally I don't think you can ever be sure if you have lyme or you don't. I would not hold any test as gospel

It's a very complicated issue , also complicating things are all of these fanatics who think they have lyme when they don't . The truth probably lies somewhere in the middle.

http://www.ccmhi.org/ MistakesToAvoidBewareOfTheLymeDiseaseSpecialist.htm

Lyme will not win, we will and we WILL…

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09/27/2007 22:28
erleichda
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Hi Julie,

I had a bullseye rash in the late 90s. I was not treated because the doc said I could not get LD in this state.

Igenex did my test. It was negative. But the great thing about Igenex' WB is that you can see how you test on each band. Western blots look for antibodies that are made to fight against different parts of the Lyme bacteria. When you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria. So even if you have a negative test, if there are Lyme antibodies, you will see this.

Igenex and a couple other labs specialize in borreliosis. As Dr. C says, "The "right laboratory" means one that specializes in borreliosis testing. In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs. The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed. If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics."

Dr. C's Western Blot explanation: http://tinyurl.com/2tapj9

But the tests are not the way to go when making the determination. This is why Lyme is a clinical diagnosis.

With your situation, tests should not have been done at all. You were bitten by a tick; shortly after, you started experiencing symptoms which have been with you since that time. The diagnosis is there and tests are not necessary. But the medical community does not understand Lyme, they don't know how to treat Lyme, they want nothing to do with it. They just follow these rules: if there is a tick bite, do an ELISA (or something similar). If it's negative, you don't have Lyme. In my case, the doctor did not even do THAT much.

Many believe that Lyme is the cause of ALS; MS too. It's not a widely held belief by the general public, but most people don't know or understand anything about Lyme, either. One way to tell is to start treatment. If you get good results, your ALS was from Lyme. More about Lyme/ALS: http://tinyurl.com/3baxho

The bottom line is to try the antibiotics. If you start getting better, you have your answer.

If you read Dr. Crist's explanation of the test, it makes much more sense. But a clinical diagnosis is the way to go, as in your case.

Post edited by: erleichda, at: 09/28/2007 18:04

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09/27/2007 23:19
RuthH
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Hi Julie, I have no problems with Igenex; they did both my tests. The 1st one came back Equivocal & the 2nd (just this past year) came back Positive. The 2nd test was done after I had been on abx for 5 years; it's stated by many in the Lyme world that WB tests often are Positive after abx. Ruth

Here's a very good article about Igenex; even the feds found the lab worthy of certification.

www.ctlymedisease.org/headlinestory02.htm

Part of the article states:

The Scrutiny Ends For Igenex Labs – A Lyme Disease Specialty Lab By Mark Leavitt, 11/18/05

"In light of the numerous hearings on Lyme disease across the country, to follow the CDC recommended guidelines will miss many patients resulting in misdiagnosis that can be devastating if the disease progresses to a later stage. Awareness of the flawed CDC two tier testing system demonstrates the need for State and Local governments to step in to help the patients that are being misdiagnosed or under diagnosed because of the CDC’s flawed testing. IGeneX Labs has recently passed two inspections for its biannual recertification from the State of California. A federal inspector also arrived simultaneously. The inspection was intense, with a focus on the Western Blots. The lab has been fully recertified."

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09/28/2007 03:52
Julie4848
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Thank you. I am going to have the WB done just for my peace of mind. I fully agree, I know in my heart I have lyme, was 110% until July 22 when I found the tick and 8 days later all this started....He does not think I"m crazy for thinking lyme, I think he feels the same way but wanted to run all this blood work as my thyroid is a mess "Toxic Godiers". so when I get the results back will let you know.

Julie

Lyme will not win, we will and we WILL…

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