Igenex labs

Discussion in 'Fibromyalgia Main Forum' started by cbs1234, Mar 8, 2007.

  1. cbs1234

    cbs1234 New Member

    I went to a doctor a couple of years ago that is considered a great alternative practitioner. He is a so called Lyme literate doctor.

    First visit, he put me through a lot of tests and found nothing out of line. Then, on my second visit, he told me he wanted to do a "special" lyme test with a company called Igenex. I told him I had been tested for Lyme already but he insisted that Igenex was special. Being a natural skeptic, I asked him a couple of simple questions. First, how many blood samples had he sent to Igenex after other labs had found no indication of lyme. His answer was 400 to 500. Next, I asked him how many had come back positive. He said, "wow, you're the first patient that has ever asked that question." I said, "how many." He said, "100% were positive." I said, "are you that good at diagnosing patients." He said, "no." I said, "then why do you think 100% came back positive." He said, "I don't know." At that point, I thanked him for his time and left. I can say this much for the doc, at least he was honest.

    Be very, very wary of labs that have the "only reliable test" for any well known condition. In a capitalistic society, if the test was that good, others would be doing it.
  2. wrthster

    wrthster New Member

    Great post and I completely agree with you. By the way, the President of Igenex sits on the board of directors at the Lyme Disease Association. I found that rather interesting. I think people need to know that other than Quest and Labcorp, SUNY Stoneybrook which is a University lab does test for Lyme. It is a very good alternative.
  3. connieaag

    connieaag New Member

    My daughter's IGenex Western Blot came back negative a month ago and it was the $445 test.

  4. mollystwin

    mollystwin New Member

    My brother had a negative Igenex test and and aquantance also had a negative test.

    My twin and I both have lyme based on a positive test. My sis had a positive quest test and positive igenex. I believe in this test and that also many (not all but a subset) with fibro and CFS actually have lyme. The doctor only tested patients that had lyme symptoms so maybe they all had lyme. My doctor also uses the CD-57 test with the ignenex. CD57 test is for lyme only so when used together, you can be confident with the results.

    There is doctor in michigan who is using a different type of test than igenex who found that almost all of her fibro patients tested positive for lyme. Maybe we will be hearing more from her soon. I think her name was Mattman or something like that.

    My insurance paid for all but $19 of my igenex test. I have met many people on my various lyme message boards who are getting well after being treated for lyme based on an igenex test. I hope you are not missing out on a treatment that could be making you well.
  5. mollystwin

    mollystwin New Member

    Apparantly Igenex was investigated due to high positive testing rate and passed inspection. Here is an article:
    We can all breathe a sigh of relief, Igenex labs that specialize in tick-borne disease testing passed certification not only by the state of California, but by the state of New York that put a big blot on the labs Western Blot Lyme disease test prompting for investigation because Igenex purportedly performs inaccurate lyme disease testing. Igenex was put through this scrutiny due to an article that came out in the New York Times on August 2005. The article starts off profiling a patient with disabling pain and exhaustion. Doctors couldn't figure out what was wrong with him and even ruled out Lyme disease until one doctor sent his blood work to Igenex Labs. The controversy started when the results came back from Igenix positive for Lyme disease by the ELISA and Western Blot test. Another doctor got involved in the case from New York and tested the patient's blood numerous time for Lyme with negative results using a different lab and insisted he did not have Lyme disease. Then, the New York State Department of Health started investigation proceedings on Igenex labs located in California.

    What is interesting in all of this is Lyme Disease is a clinical diagnosis and testing is supportive only. Most Lyme disease specialists agree that testing can be inaccurate and should not be relied upon for definitive diagnosis of the disease. The ELISA is the most performed and least expensive Lyme disease test and can be inaccurate. The more expensive Western Blot test is better but is not performed if the ELISA is negative. The Western Blot also takes longer for results. The CDC recommends this two-tier approach and is what most doctors follow: the ELISA test is performed first then the Western Blot only if the ELISA is positive. What many patients do not know is they can have a negative ELISA test but have positive results from the Western Blot indicating Lyme disease. The patient may never get to the second tier (Western Blot) resulting in misdiagnosis that can be devasting if the disease progresses to a later stage.

    One has to ask the question how does the ELISA test know if you had the Western Blot and why is the two-tier recommendation strongly emphasized by the CDC? Dr. Paul Mead of the Center of Disease and Control stated in the article on using this recommended two-tier approach as well as his concerns with Igenex laboratory tests in regard to accuracy and clinical usefulness. Yet, Dr. Mead stated at the state of Connecticut Department of Public Health Hearing on Lyme Disease in January 29, 2004; "there will always be some patients with Lyme Disease whose illness does not meet the national surveillance case definition. For this reason, CDC has stated repeatedly that the surveillance case definition is not a substitute for sound clinical judgment. Given other compelling evidence, a physician may choose to treat a patient with Lyme Disease when their condition does not meet the case surveillance definition."

    The challenge for better Lyme disease testing as well as needed research into this disease seems to be apparent and is long overdue. Is it because one may be crucified or ridicule along the way? Igenex Labs created two new tests in 2001 called the Lyme Disease urine antigen Assay (LDA) and the Reverse Western Blot (RWB). Both of these tests detect Lyme antigen shed in the urine. Dr. Paul Mead at the Connecticut Lyme disease hearing stated; "the CDC supports national surveillance, epidemiologic response, field and laboratory research, consultation and educational activities through intramural initiatives."

    Is Lyme disease testing only good if it's created under the guidelines and watchdog of the CDC as suggest by Dr. Paul Mead when he states through intramural initiatives. If that is the case, it is no wonder lyme disease testing as well as a cure for this illness is going no where. Lyme disease has reached its 30th anniversary this year and were no better off then thirty years ago except for public awareness. Doctors are still confused on testing, diagnosis and treatment. Lyme disease specialists in the state of Connecticut are far and few in the very heartland where the disease was first brought to public attention in Old Lyme, CT. The doctors that are willing to treat the disease are always at risk of being persecuted for using long term antibiotics if they feel the patient meets the clinical diagnosis. In the past, some Connecticut Lyme doctors have been investigated and risked losing their medical licensee. This has resulted in the very low numbers of doctors willing to treat the disease in Connecticut and many other states.

    Many patients are told they don't have Lyme disease and a postive lyme test means negative. The doctors do not want to touch this disease and now laboratories are being scrutinized. Long term antibiotics are considered a death sentence for the use of Lyme disease yet they are used long term for teenagers for acne and other disorders. Lyme patients end up taking medications to alleviate symptoms of muscle and joint pain and other discomforts. Many are told they need to a see a psychiatrist that usually starts a new battery of psychiatric drugs. What about the side effects of these type of drugs? In fact, most psychiatric drugs we do not understand how they work on the brain and what the damage long term may be, yet this is perfectly acceptable.

    In the end, the patient suffers enduring worsening symptoms over time. Let me repeat that statement one more time, because nobody seems to hear this: the patient suffers in the end with worsening symptoms. I truly believe this disease can be cured but for some reason we don't want to. The public and social demand as well the economics and political bureaucracy will determine the future of Lyme disease.

    In the meantime, you have to sort through this maze yourself and endure a roller coaster ride of our current medical system and make your own personal assessment if you have Lyme disease or not. I only hope the right decision is made for anybody in this predicament because the wrong decision will lead to more treatment trails and health complications due to this dreaded illness.
  6. mollystwin

    mollystwin New Member

  7. mollystwin

    mollystwin New Member

    This new test is not an antibody test like the western blots. The problem with testing for antibodies is that with lyme a person usually has a very weak immune system so antibodies are hard to detect because they may not be present or if they are, perhaps in small amounts. So a person who tests positive for lots of bands may not be as sick as a person who shows positive on less or no bands at all. That's why CDC criteria doens't make sense. They require 5 bands to be positive.

    This new test by Central Florida Lab looks for the antigen itself which should result in more accurate testing. For those sceptical about the Igenex, perhaps you could look into this new test.

    Dr. Lida Mattman's test also looked for the antigen or bacteria. She used some sort of flourescent lighting to detect the bacteria. She found almost all of her FM patients were infected with the lyme bacteria.

    I don't know why it's so difficult for some to believe that Lyme is so widespread. I think many people are missing out on recovery because they are not aware that they have it. I just watched a program on Discovery Health on a person with lyme. She was sick for over 12 years. After Dr. Berascano finally diagnosed her with lyme and all of the coinfections, she was on her way to recovery. After several years of treatment she is now married and living a normal life.


    LISALOO New Member

    Hmm, I must be weird, I took mine throught Igenix and was negative.
  9. munch1958

    munch1958 Member

    But I was positive or Indeterminate for many bands specific to Lyme. Get a copy of your test!

    This is an explanation on how to read between the lines on the results:
  10. cristine04

    cristine04 New Member

    my doctor is very balanced on lyme issues. she doesn't get too zealot-like, ie, she knows lyme is a real disease but doesn't think every single symptom is from lyme. she says the testing is very bad and does not prefer igenex at all.

    as for my INDIVIDUAL case, i had practically every band positive from Igenex. I was negative from all other labs. i did the entire antibiotic thing with an LLMD for a long time. huge doses of Abx (combination therapy) and no improvement at all. but that's just ONE story and no one should ever base his or her decisions based on what happened with one person.

    apparently the investigation that Igenex passed was shady. this is b/c they went back to their "other practices" when the investigators left. I read about it in the sf chronicle (i think). I will try to find the article...

    what needs to be done is we must get HARD NUMBERS FROM IGENEX b/c that is science. until then this has all been conjecture and that doesn't help any of us! If Igenex was investigated and it was found that 99% are positive or 45% it would sure make a lot of people breathe easier knowing they were either not worth a dime or worth the money. but such information is NOT being made available and that in of itself is disturbing.

    Disclosure and truth is what sick people need to make sound decisions. No more profiting off of the desperation of sick people who want to put a sexier name to their suffering (lyme over CFIDS, for example) UNLESS such a disease and it's long-term treatment stands up to hard science and is published with long-term, double-blind, placebo-based studies.

    It's sad when people spend $$$, time, etc and there's no data. And there just isn't real data on lyme treatment for chronic cases. (if patients go in knowing there's no data and still want to, fine. that's their choice). The "information" people get is from here and lyme web-boards. Supportive, but purely anecdotal. In my humble opinion people deserve more from the labs and more from the medical professionals on lyme (and other things). And the longer people want to pretend that labs like Igenex are all but infallible, I fear, the longer it is until lyme will get the respect it seems to deserve.