Igenex--be cautious about lyme test results

Discussion in 'Fibromyalgia Main Forum' started by cbs1234, Aug 23, 2005.

  1. cbs1234

    cbs1234 New Member

    People--don't you think its just a bit fishy that so many folks have negative tests with numerous other labs, but it just so happens that Igenex comes up with all these positives. That was the point of my earlier post about lyme being a fad diagnosis--not that it isn't real--just that it is now a fad with many alternative docs. I am not demeaning those with lyme--it is real and it causes severe problems.

    I had the exact same experience. Numerous negatives then I went to a new alt doc who wanted to do another test with igenex. I asked him what percent of his tests come back positive--he said 100% of the over 300 tests he had sent to igenex werre positive. Believe it or not, he admitted that I had asked a very good question and he could not explain why 100% were positive. He said no doc is that good at diagnosing patients. But, he went on to say he would continue to use them even though I turned down the very expensive test. If that doesn't sound suspicious, I don't know what does.

    Some of you may have lyme, but many of you are getting hoodwinked and then taking the very dangerous step of long term antibiotic treatment. Think about it--
  2. suz9601

    suz9601 Member

    This really concerns me since the treatment for chronic lyme isn't the safest. I hope someone finds out soon if this lab can be trusted. I tested positive through Igenex. Someone had posted on here that the FFC center said they wont use Igenex anymore because of everyone coming up positive..it is something to be concerned about.
  3. elsa

    elsa New Member



    I don't know much one way or the other about lyme testing labs., but it is very hard to argue wih 100% positive returns. I'm the queen of balance ..... ain't see'n much here .....

    100% of 300 does not sound above board to me. Thank you for the heads up.

    Elsa
  4. sickasadog

    sickasadog New Member

    I am considering the FFC and was hoping for the DR there to give me the test from Igenex Where did you hear that they are not using Igenex?? Could you refer me to that post. I know someone else using the FFC and awaiting results of a lyme test from them.

    thanks
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I don't know much about them, so I can't say yay or nay. If they are up to no good, they'll go down in a plume of smoke at some point.

    I have my doubts that a lab would do that. They'd have to know what they have to lose. If you think about it, you can't exactly set up a lab like an alley craps game, it's a huge costly investment and I'm sure the governing bodies have strict criteria.

    I'll await other comment and see if anyone knows of negatives from Igen.


    Jeanne
  6. tansy

    tansy New Member

    even so it has returned negative results. Bowen is often incorrectly written about as producing all positive results, they have reported negative results as well.

    A few bits of info, from a LLMD’s viewpoint, on the various tests.

    Extracts from Lyme Articles Summary

    By James L. Schaller, MD, MAR, PA, DABPN, DABFM

    “Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992)."

    "In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme where it was in the brain or causing severe body damage. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease. But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people”

    “The Western Blot is merely another antibody test. Our experience in measuring immune system markers is that the immune system is weakened in many with Lyme. So depending on immune system anti-Lyme antibodies is wishful. However, the Western Blot is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.”

    "In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990)."

    “Some bands may be fairly specific to Lyme: 12, 22, 23/25, 31, 34, 35, 37, 39, 83, 93. Dr. Charles Jones, who is the leading pediatric Lyme expert in the USA, with over 6,000 treated child Lyme patients, explained to me if a Western Blot done by IgeneX -- the best Tick illness lab in the USA -- comes up positive with only one band, it is a specific positive. It means that "bands" or antibodies specific to Lyme are present.”

    “PCR testing can have a false negative of 30% in those with positive Lyme. It is also good to test the PCR from blood serum, whole blood and urine, so they have more ways to look for the illness. Urine might be the best since Lyme seems to migrate to the bladder.”

    [This Message was Edited on 08/23/2005]
  7. karatelady52

    karatelady52 New Member

    What would they gain from "faking" the tests? From what I understand, the tests are much more thorough than other labs.

    There's also another lab called Bowen that is good for Lyme testing.

    By the way, Lynn who goes to the FFC in Atlanta had a negative on her Lyme test. She has talked to a lot of the patients at the center so maybe she can tell us more.

    My doctor said she would only use 2 labs in the U.S. and they are Igenex and Bowen. I will ask her about this and see what she says.

    Sandy
  8. suz9601

    suz9601 Member

    It is just one of the centers that didnt use Igenex, not all of them. I think it was in Nankjays posts and she was banned and they deleted her previous posts. She had started a thread about why the FCC didn't test her for lyme and that is when someone responded that they went to the FCC and that particular branch didnt use igenex because of all the positives. Maybe that person will respond if they read this. You can always call the branch you are interested in to see if they use igenex too.
  9. ANNXYZ

    ANNXYZ New Member

    at the Atlanta FFC said she is not getting that many positives back on the Igenex lab tests . Also,
    one of my friends just had a lyme test done with Igenex , and hers was negative .
  10. sickasadog

    sickasadog New Member

    yeah, i knew her from another messageboard before this one. i didn't know she pursued the FFC afterall.
  11. sickasadog

    sickasadog New Member

    I think the FFCs should be uniform in their testing since they are supposed to be part of the same national center if I am correct.
  12. redsox10

    redsox10 New Member

    James L. Schaller, MD, MAR, PA, DABPN, DABFM
    Clinical and Research Psychiatry and Medicine
    Adult Psychiatry and Psychotherapy Services
    Subspecialty Child & Adolescent Psychiatry
    Hormonal & Nutraceutical Consultation
    Anti-Aging & Obesity Consultation




    Dr. Charles Jones' Approach to Reading Western Blots:
    A Wise, Common Sense Position
    Dr. Schaller Introduction: Let Me Help You Understand Common Clinical Basics.

    One of the happiest days of my recent career was when this 75 y/o veteran doctor, beloved all around the USA for his treatment of over 6,000 Lyme infected children, agreed to treat my children. His reading of Western Blots is not effected by any Big Government agencies. He is not accountable to any lab oversight government entity. And no one at the CDC, FDA or any medical board in the USA has his massive experience in treating Lyme in youth and reading Western Blots. So read below his clear and convincing reasoning on the interpretation of the Western Blot.

    Before I offer Dr. Jones's material, let me put in them in context, and share a few basics. First, the Western Blot measures the antibodies your body makes to attack the Lyme infection.

    Also, it is important to note that like most progressive Lyme experts, Dr. Jones assumes you have a Western Blot from IgeneX, which is an internationally famous, tick-only lab, with full lab certification. Other massive cheap national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms.

    However, if you have had a Western Blot done at a junk lab, please still glance at the result. Why? Because you may find, as I did with one relative, that one of the antibodies or "bands" was positive. In this relative, the band was a "fingerprint" band. Meaning, Lyme is the only organism that makes the human body make this antibody. The child was positive.

    Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant‹perhaps this is a rhino? This is the 41 band. It is from the flagella, or huge stringy rod that projects from it. Very crudely, the flagellum looks a dash like a sperm tail on the Lyme organism and is most often positive. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

    Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones' point. It you see an 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme‹just like a tusk on an elephant.

    What Do the Number of Pluses Mean?

    IgeneX gives levels of antibodies. One + means you have some antibody of that type, and +++ means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

    Also, many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.

    Currently, IgeneX does not use Dr. Jones' criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies, and in general the government is anti-progressive Lyme. They are years behind clinical medicine and following a few Ivy Tower types. Many government agencies are attacking Lyme experts like the FDA and especially state medical boards. These lawyer run groups are attacking the best Lyme doctors in the USA. Generally, after the board takes out some of the best Lyme doctors in their state, patients counter attack the state boards and get laws passed to stop this 1984 Big Brother harassment. But these doctors are gone.

    Further, this scares thousands of doctors into avoiding treating Lyme aggressively or makes simple thinking doctors feel these progressive doctors must have been wrong. Some physicians are simple in the politics of power. We have seen the same state board abuse against physicians willing to take on a few desperately suffering chronic pain patients, e.g., the type with rotting joints who are inoperable and need rising doses of narcotics to work fulltime and keep from crying from pain. For example, Pennsylvania and New York are two of the leading anti-pain, anti-Lyme treatment and anti-doctor states in the USA.


    --------------------------------------------------------------------------------

    Charles Ray Jones, M.D.
    Madison Towers
    111 Park St. Suite F
    New Haven CT 06511
    Tel. 203 772 1123 ? Fax 203 772-0682

    Addendum Regarding Lyme Serology
    There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

    Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

    CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.

    CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.

    It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.

    IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.

    The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.

    This does not make sense.

    The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 6000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.

    Rev. 2/25/04


    --------------------------------------------------------------------------------

    Dr. Schaller inserted all bolding in Dr Jones' article above, and inserted some spacing.

    Final clarification by Dr. Schaller: Dr. Jones believes that the crude non-specific ELISA antibody test is a very poor screen. He has a lot of company.

    Also, he disagrees with the whole CDC approach on the Western Blot. He thinks it is wrong to include junk non-specific bands as the way to determine a positive, and wrong to exclude very specific fingerprint bands in diagnosis.

    I work with another researcher who was mocked by the CDC on his work on toxic algae-like organisms, and then he ended up being asked to publish his findings in their journal. You can be sincere and still fallible. There is no medical POPE. Many exacting type personalities who are easily impressed with titles and schools forget this very easily.

    This is offered with my deepest thanks to Dr. Jones and reprinted and posted with permission.

  13. lilbird

    lilbird New Member

    I had a lyme test done through Labcorp. I do not know why the Dr. there did not us IgeneX. I do have an appt. tomorrow and I plan on asking why. I will let you all know what he says after I talk to him.

    Cathy
  14. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    the first was as far as I got (since it's 4:30am), hard to improve upon I'm sure. Surely, even the naysayers, who think growing Lyme dx is some fad, would find it hard to refute such clear and groundbreaking info?

    It has to be possible, taht Lyme is truly a growing epidemic, esp. since it's largely left unchecked and doctors are getting attacked and revoked for daring to help sufferers of it on their last legs. Surely something is making so many of us so sick. Should we really scratch our heads, write Lyme dx off as just a silly fad, and then keep wondering why are we so sick?


    Jeanne
  15. matthewson

    matthewson New Member

    That is SO far from the truth! Most labs are CAP certified and that is a very rigorous certification! Laboratory workers either have a bachelor's degree or an associates degree. Most have bachelor's. I would not believe anything that the article writer said just based on that alone!

    The test is the same. The only problem with Igenex and Bowen is in the number of bands that they are calling positive based on. They do not follow the CDC protocol.

    Lyme disease is a fad diagnosis and in a few years it will be on to something else. That doctor's experience of 100% positives SCREAMS that something is wrong!

    A very mad Medical Technologist! Sally
  16. redsox10

    redsox10 New Member

    There are so many articles on Western blot. To get a positive lyme test with current CDC testing is difficult. There guidlines were never meant for diagnosis but for surveillance. My daughter was sick for 2 years before her Lyme diagnosis. She is responding the ABX treatment very slowly.

    To say Lyme is a fad diagnosis is very sad. One who has been ill with fibro or cfs should know what it is like to have such an invisible illness. My heart sank when I read this.

    I am a nurse, I know what abx can do. I also know they are giving my daughter her life back. These lyme doctors, like cfs docs are dedicated to what they do. My daughters Lyme doc has treated over 7000 children around the world. 6000 have improved. If you spend any time with him you would realize that lyme is not a fad.
  17. dontlikeliver

    dontlikeliver New Member

    Alternative doc?

    I do not see an alternative doc, nor do many (most) people with Lyme that I know, yet these docs use Igenex (among other labs).

    Why not question the labs that consistently give false negative results? In addition, EVERYONE is NOT getting positive results from Igenex. I know plenty of people who have NOT. Where are these 'facts' coming from, are they Chinese whispers?

    In addition, I think it is important to have some understanding of the spirochete itself, and how the tests are done and how they differ and then why, for instance, Igenex does actually have a much higher sensitivity than other labs.

    Lastly, let's not forget that Lyme disease is a clinical diagnosis, according to the CDC and according to Lyme literate physicians. That is the key anyway.

    DLL
    [This Message was Edited on 08/24/2005]
  18. dontlikeliver

    dontlikeliver New Member

    Matthewson,

    Are you aware that the protocol of which you speak was devised for demographic, NOT DIAGNOSTIC purposes? Why are labs ALLOWED to use those demographic guidelines to diagnose, or NOT, people with Lyme????

    Whoever this doctor is, he is obviously not living in the real world, or has an agenda of his own. Everyone (I reapeat) is NOT getting positives from Igenex, far from it.

    I also disagree that Lyme is a fad diagnosis. Unless you consider fad lasting decades. As I said previously, I knew quite a few people in the late 80s and early 90s locally, who were diagnosed and treated for Lyme. It seems to me that the fad is really the denial of Lyme, which has sprung up in recent years.

    DLL
    [This Message was Edited on 08/24/2005]
    [This Message was Edited on 08/24/2005]
    [This Message was Edited on 08/24/2005]
  19. bpmwriter

    bpmwriter New Member


    i posted earlier about this on another thread. i tested negative for lyme through igenex. not trying to exonerate them, just wanted to share some facts.

    eddie
  20. cbs1234

    cbs1234 New Member

    Folks--Igenex states on their website that they only serve about 1000 locations in the US and they only provide lyme testing services. there are over 500,000 physicians in the US. If they are so good and have such sensitive and highly accurate testing, why are so few doctors (less than .2% of doctors) using their services.

    Again, I believe lyme is a real disease. BUT, I do not believe it is nearly as widespread as some of these so called docs and labs say it is. I have a friend that was treated by one of these fad diagnosis docs that said she had lyme. The antibiotics he gave her almost destroyed her intestinal system. She is recovered after a long stay in the hospital. Her other "lyme" symptoms never got better even after the prolonged and heavy doses of abx. Her new docs have told her she never had lyme.

    Again, you folks need to be very careful about the lyme diagnosis. Especially if you never remember being bitten by a tick and having the telltale ring rash that can indicate you have been infected by lyme. The abx regimens prescribed by these docs can cause problems that are much worse than the symptoms of the lyme.