What lab do you like for lyme testing?

Discussion in 'Fibromyalgia Main Forum' started by Anita B., Dec 22, 2005.

  1. Anita B.

    Anita B. New Member

    I received contradictory results from different labs that I have used for the lyme western blot test. I have western blot results from Speciality Lab, MDL Lab, IGeneX, Stony Brook, Imugen, and Quest. Can anyone suggest a reliable lab that reports on all the bands (as does IGeneX), not just a few? Are there any other good labs out there for lyme testing?

    Best regards,
    Anita
  2. hopeful4

    hopeful4 New Member

    Hi Anita,
    After 5.5 yrs of CFIDS/FM, I started tx at FFC. After 8 months of not improving, and actually getting worse, Dr. retested me for Lyme. The original test was Quest, and came back negative. The Igenex Western Blot, came back positive.

    I've read that the Quest test is not reliable, and that the Igenex Western Blot is much more reliable. I've also read that the Bowen test is a good one, but I don't know much about it.

    The BB can hide so well that it can evade testing. Just before re-testing I had started on doxycycline for about 5 days. My Dr. indicated that this could "stir up the lyme" and make it easier to detect.

    Just wondering why did you have so many different tests? The diagnosis itself is clinical, as you may already know. Do you see a LLMD? Often, a doctor not in the know about Lyme can miss the dx. Several of mine missed it for 5.5 yrs., and many, many people have gone undiagnosed or misdiagnosed.

    Best wishes always,
    Hopeful4
  3. Anita B.

    Anita B. New Member

    Thanks, Hopeful4. The reason I was tested by so many labs was that I didn't want to go on a course of long-term antibiotics without a fairly definitive diagnosis of lyme, because antibiotics can have side effects, especially when taken for many months. Initially, only two bands were positive, not enough for me to have a positive IGG or IGM overall. I was tested about once a year since 1999. That summer I spent quite a few weekends in a beach community where there were many deer. I've had CFS and FM since 1979, when I was young and in school, and I was concerned that, were I to contract lyme, I might not be able to differentiate it from the FM symptoms I had already for so many years. The IGeneX western blot results were becoming increasingly positive with each successive test. At first, my internist believed, and I think reasonably so, that I didn't have lyme and that I was getting a cross reaction due to some other organism that wasn't lyme. My internist is a lyme literate doctor, but not a lyme specialist. By the summer of 2004, I finally had enough positive bands to get a positive diagnosis from IGeneX. Most of the other labs, however, were showing only two bands positive. When the IGeneX test results were positive, my internist referred me to an infectious disease (ID) specialist who had a particular interest in lyme. My internist told me that, based on which lyme specialist he sent me to, the outcome would be predetermined; in other words, some specialists whom he knew would say I definitely had lyme, and others would say I probably didn't have lyme. He sent me to an ID doctor whom he thought would be open-minded about the diagnosis. The ID doctor put me on antibiotics, which I took for three months, first two months of doxycycline, then one month of Biaxin. He told me that, if I felt worse initially on the antibiotics, that would help to confirm the lyme diagnosis, since I would experience an initial die-off of the organism. However, I didn't feel worse on the antibiotics. I felt no change at all. Just before and just after I started the antibiotics, I got tested by more labs, hoping to confirm whether or not I really had lyme. But the other labs only had a couple of bands positive. A few months after I finished the antibiotics, and again a year after, I was re-tested by IgeneX. My antibody response had gone way down, which led my internist to opine that (assuming I did have lyme) that I no longer had lyme, and that the antibiotics had cured me. And, post-antibiotics, my western blot results from the MDL Lab, which is supposed to be a very good lab, had no bands positive. Okay then, so why do I still feel so awful? Obviously, because I still have CFS and FM, the onset of which predated, by 20 years, my contracting lyme. On the other hand, I am concerned that maybe I still have lyme. Even after the antibiotic treatment, many bands on IgeneX's western blot are still positive or equivocal, but fewer than before, and not enough to give me a positive result. Can you see the predicament? I would not want to go on antibiotics again If I don't have lyme anymore, assuming I ever had it. I do believe in IgeneX, but the accuracy of that lab is being questionned by some. There is so much politics involved regarding laboratory testing for lyme, I don't really trust the authorities who are questionning IgeneX's result. However, if IgeneX's western blot is accurate, some other lab ought to be able to confirm its results. So, I am trying to find out if anyone knows of other labs that are said to be good for lyme testing. Sorry for this run-on message.

    Anita
  4. hopeful4

    hopeful4 New Member

    Yes, I do see your dilemma. I'm a newbie at Lyme, and learning as I go. I haven't gotten to the part, yet, of knowing when to stop the antibiotics, as I'm just getting started.

    I do remember my Dr. saying that one thing I will be re-tested for is my NK cells. I started with very low NK cells. If the treatment I'm doing is helping rid my body of lyme, then my NK cells will go up. This is another piece of info to monitor treatment.

    It would seem to me that whichever test you took that showed you were positive, is the same test you should take again to see an equal comparison. Otherwise you are comparing apples and oranges.

    You asked about differentiating FM/CFIDS symptoms from the Lyme. That's important to know, but with so much overlapping may not be possible. What's more important, in my opinion, is to treat the underlying causes, the hormonal imbalances, the viruses, enhance the immune system, etc.
    -------

    This is taken from:
    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue (From the Fibromyalgia and Fatigue Center)

    "Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation.

    The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%."

    and here's why you may still be feeling so bad:

    "Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as ‘brain fog’. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease.

    Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment.

    This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients."

    -------------
    In the book "Chronic Fatigue, Firbromyalgia and Lyme Disease" by Burton Goldberg, it states:

    "The criterion for stopping therapy is that one must be totally Lyme disease-symptom free for two months, with no Lyme flare-up induced by another infection or menses and no Herxheimer reaction caused by the body manifesting symptoms in response to dying Bb." (Dr. Jones--I couldn't find his first name)

    -----
    Sorry if this is a bit of a hodge-podge, and you may have already considered all of the above. Hope there's a little something here that will help out. Also, have you gone to lymenet dot org? Tons of info and a forum as well.

    Best wishes,
    Hopeful4