My Igenex results . . . Negative?

Discussion in 'Lyme Disease Archives' started by Katy47, Jan 23, 2008.

  1. Katy47

    Katy47 New Member

    OK here it is: (I don't understand why there are the ** and yet also the - sign after so many of the bands)


    18 kDa. -
    22 kDA. -
    **23-25 kDa. -
    28 kDa. -
    30 kDa. -
    **31 kDa. -
    **34 kDa. -
    **39 kDa. -
    **41 kDa. IND
    45 kDa. -
    58 kDa. -
    66 kDa -
    73 kDa. -
    **83-93 kDa. IND


    18 kDa -
    22 kDa -
    **23-25 kDa -
    28 kDa -
    30 kDa -
    **31kDa -
    **34 kDa -
    **39 kDa -
    **41 kDa -IND
    45 kDa -
    58 kDa -
    66 kDa -
    73 kDa -
    **83-93 kDa -

  2. mollystwin

    mollystwin New Member

    Hi Katy,
    You have very little activity on your test results. The bands with the ** are the ones that are related to lyme disease. A - means there were no lyme antibodies detected for that band. An IND means a small amount of antibodies were detected for that band. If you had a + it means antibodies were detected, more than IND and you can get ++ and +++ as well which means even more antibodies were detected.

    So you can see that you have two IND in lyme specific bands on your IGM test for bands 41 nd 83-93. Then for your IGG you have one IND on band 41.

    I am not an expert in reading these test results, but this is a negative result. There were not many lyme antibodies detected in your blood. Unfortunatly this doens't rule out lyme because if you have low immune response, you wouldn't be producing many antibodies.

    Did you have an LLMD run the test? If so, they could help you interpret and decide what to do next.

    Hopefully you will get more responses here.

    take care,
  3. Katy47

    Katy47 New Member

    Not that I have any money to spend, but I sure would like more sophisticated testing, like the protein gene tests for specific mycoplasmas.

    I don't want to bore anyone with a rundown of my symptoms other than to say they're classically, classically lyme. So, what I want to know is, does a virulent strain of stealth mycoplasma act just like lyme?

    I think based on my degree of dysfunction that I'd be one to test falsely negative, but the above question begs attention, too.


  4. mollystwin

    mollystwin New Member

    We really need better testing. Your results cannot confirm that you don't have lyme. But they don't tell you that you have it either!! It sucks.

    I don't know the answer to your mycoplasma question. I'm hoping someone else will see this and help you out.

    Did you have a tick bite and a rash? Lyme is diagnosed with a bite, rash and symptoms even without a positive test.

    I dont' remember a bite or rash. I've had many bug bites and rashes in my life, but do not remember digging out a tick or a bulls eye rash. But I did have a positive test.

    I hope you find some answers.

  5. munch1958

    munch1958 Member

    Sorry you didn't get a clear cut answer from the Igenex test. I didn't either. Neither did my brother but we are both recovering by seeing the same LLMD.

    My test was overall negative but I had some double starred bands show positive. I was on Doxy for 9 days at the time of the blood draw. My brother was NOT and I had more bands show up.

    I know I was bit in 2001 for sure and suspect other bites because of my history of travel and hobbies. My brother was bit 16 years ago on a hunting trip.

    Have you tried any Abx? Do you get worse initially and then improve? I have a long and crazy list of symptoms too. While it's boring to type them up it's not boring for me to read. I kind of like to compare notes with others so I don't feel like my symptoms are bizzare.

    Here's some info that may help you pinpoint why the test could be negative even though you have Lyme. Do you have a history of a EM rash? The rash is diagnostic in and of itself. Most LLMDs will treat on the rash and symptoms alone because testing is so poor.

    Reasons for False Negative (Seronegative) Test Results in Lyme Disease

    From the Lyme Disease Foundation and the Lyme Alliance

    Compiled by Melissa Kaplan 2003

    Nine Reasons for False Negative Lyme Disease Blood Test Results
    From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
    1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

    2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

    3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

    4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

    For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

    5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

    6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

    7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

    Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

    8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

    9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.


    Reasons Why A Seronegative Test Result Might Occur
    Tom Grier, Lyme Alliance

    1. Recent infection before immune response

    2. Antibodies are in immune complexes

    3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)

    4. Spirochete are deep in host tissue

    5. Blebs in body fluid, no whole organisms needed for PCR

    6. No spirochetes in body fluid on day of test

    7. Genetic heterogeneity (300 strains in U.S.)

    8. Antigenic variability

    9. Surface antigens change with temperature

    10. Utilization of host protease instead of microbial protease

    11. Spirochete in dormancy phase

    12. Recent antibiotic treatment

    13. Recent anti-inflammatory treatment

    14. Concomitant infection with babesia may cause immunosuppression

    15. Other causes of immunosuppression

    16. Lab with poor technical capability for Lyme disease

    17. Lab tests not standardized for late stage disease

    18. Lab tests labeled "for investigational use only"

    19. CDC criteria is epidemiological, not a diagnostic criteria


    Melissa Kaplan adds:

    The majority of laboratories, including state and county public health laboratories, use the CDC epidemiological criteria for reporting Bb Western Blot IgM and IgG test results. Some of these labs may automatically insert a statement to physicians similar to the following one included by the Sonoma County Department of Health Services Public Health Laboratory:

    The diagnosis of Lyme disease must include careful clinical evaluation and should not be based only on the detection of antibodies to Borrelia burgdorferi.

    Unfortunately, however, most physicians do use these tests as definitively diagnostic, rather than making a clinical diagnosis based on patient symptomology and response to the various antimicrobial protocols used to treat Lyme and common tickborne co-infections.


  6. Katy47

    Katy47 New Member

    Yes Munch I am on 400 mg a day of doxycycline, have been for 6 weeks. That was for the high titers of mycoplasma and chlamydia pneumoniae, and also the possibiliy that the tests missed Lyme.

    I read your post a long time ago about the reasons for false negatives in Lyme testing. It just is so unfortunate for those who need validation the most.

    There is one highly recommended LLMD in my area. He's the only doctor in Texas who attends the Lyme conferences in Connecticut. But now I'm in a position where I'm having to move to my family's in Nebraska, where such doctors are nonexistent.

    Why are we all so focused on these indeterminate antibody tests? What about alternative diagnostics like protein gene testing and live microscopy?

    I'll have to wait on my disability to come in, and when it does then I can move to where I can get treatments . . . at least I hope to find a way of doing that. What I really want to try is hyperbaric oxygen therapy. Also, a rocket scientist near me treats people with a bioresonance technique that he's patenting. Someone on Lymenet highly recommended it, as they made great progress in 8 treatments. I have an appt with him Tuesday and I'll make a judgment then.

    Maybe my problem is primarily one of mercury intoxication and stealth mycoplasmas. It's hard for me to separate out the symptoms of Lyme, mycoplasma (newly engineered strains), and heavy metal poisoning.

    Munch, my symptoms are as follows: Paresthesias - stabbing sensations in the face and head primarily but lately has been in my extremities too; numb feet; twitching and jumping in stage I sleep (seizures?); Difficulty concentrating and remembering; speech difficulties when under stress; extreme heat intolerance; visual disturbances including eye pain and photosensitivity; itching; red sunburned look that comes and goes, better since being on Doxycycline a while; generally extreme fatigue and muscular pain; stomach pain and occasional nausea.

    I had a bit in my 20s which resulted in a round ringworm; certainly not classic erythema migrans but it must have been from a bite, and I don't remember whether it had a central clearing or if it was red at first. Soon after that I had a tremendous onset of something I was hoping would turn out to be MS, to put a name to it. I was bumping into walls, itching, stinging, and had to quit work.

    If I've been herxing on the doxy it's been a slow, drawn out one, but I'm inclined to say that's the case.

    Thanks for the analysis if you care to give me one.

  7. mrdad

    mrdad New Member

    Did you send your blood sample to the Igenex Lab in Palo Alto?

    I had my test done their "in person" as I live in San Fran-

    cisco, close by. My Nurse Practitioner had a difficult time

    "reading" the report sent to her from the Lab. She thought at

    first that the data was indicating a negative evaluation.

    However, fortunate for me, she actually phoned the Lab and

    talked to the testor. He indicated that I indeed was POSITIVE

    for Lyme, "old Lyme" at that. (At least a year old) If she

    hadn't may this contact, it would have appeared that I was

    NEGATIVE! Is it possible to show the printed results to

    you provider and have them call the Lab for a definitive

    and accurate explanation! These things are just so critical

    to everything else Kathy. I've just started my protocol

    of 200mg a day (Doxycycline) for the next 28 days. We shall


    Best wishes,
  8. eec1

    eec1 New Member

    try the new CFR test that has replacedthe bowen Qribbi have 1/2 a dozen neg antibody tests over the past 4 years but had 2 pos Qribb tests at 1:128 the highest infection march 2005 and may 2006-- i just did the newCFR test last week and see the dr on fri to get results-i am pretty sure it too will be pos as i am as bad as i ever have been--3rd x on disability since sept 2004 41 is not lyme specific it is spirochetal flagella specific --syphilis-peridontal disease-and that tulreitis rabbit disease are xamples of spirocettesi think the 2 stars are bands Igenex looks at that the CDC does not consider important and most other labs dont checki would say you are closer to pos than the test shows and would start on abx 200 mg of doxy like kool-aid to lyme unless your treating in the first 30 daysand that never happens bc it takes longerthan that to get a dx that is why we all relapse so much i just started my 8th or 10th or whatever # cours of treatment--500mg biaxin with 200mg of diflucan 2x a day--try to keep it at 12 hr intervals so the blood levels stay constant--i started herxing the 2nd day and had to take a day off it just amazes me how Firetrucked up the dx and treatment for this infection is any way good luck to us all
  9. cherylsue

    cherylsue Member

    However, your symptoms do indicate you have some type of infection. It could be bartonella. You can have bartonella and not have Lyme. Dr. Robert Schaller is writing a book about that. You can check out his website online.