Penny for your thoughts

Discussion in 'Lyme Disease Archives' started by dmariesmith, Mar 5, 2008.

  1. dmariesmith

    dmariesmith New Member

    January, 2 years ago I had the beginnings of a cold AND was in a rear-end collision causing some trauma to my back (no medical trtmt). I have never felt "right" since then. I have been diagnosed w/ Fibro. But I have a yard full of dogs that I show...I know I have had ticks on me! In the beginning they did give me a Lyme test and it came back negative...but the #'s were almost borderline. I am asking now because I happened across the truthaboutlymedisease.com site and have at least 30 "yes" answers to the Symptoms List. Any suggestions? I am 35 and want to try to have at least one child, I am trying to get off my Fibro meds, but pain IS an issue. (I am on Gabapentin, Cymbalta, & Lunesta)Any thoughts or help is appreciated!
  2. victoria

    victoria New Member

    Find a good LLMD/lyme literate MD... even IGenex's test is only about 70% reliable.

    A LLMD will treat based on your clinical picture, not test results alone, especially when they are that unreliable.

    Hope you find some answers soon!
    all the best,
    Victoria

  3. Poppy2

    Poppy2 New Member

    If I didn't find a good lyme doc I would not have been dianosed. My ignenex was negative for lyme. I tested positive for babesia and bartonella. My GP would have never have gone to the trouble that this Doctor did to find a diagnosis. Good Luck Poppy
  4. dmariesmith

    dmariesmith New Member

    My General Prac is the one who had the Lyme done...I'd have to look at the paper - I don't remember which type of test was done. My thoughts were to go back to him and discuss whether to look into this further. I DON'T have the $ to do this without my insurance. I don't know of any Lyme Disease Dr's in the area (Foothills of NC). I guess my thoughts are that I need to at least explore this possibility, especially since I do want a child. Because at least Lyme is treatable, whereas Fibro is not...
  5. mrdad

    mrdad New Member

    If you get a Lyme test, I'd get it through Ignenex lab.
    My N.P. indicated to me that if my test for Lyme had been
    submitted to the Hospital Lab, a positive response would not
    have been detected. The Igenex method was far more sophisticated and definitive than could be provided by the
    Hospital lab. My test through Igenex was $380.00 plus $20.00
    that the Girls probably used to cover for their Chinese Takeout Lunch!(?)(?) Anyway, you don't want any Lab to come
    up with a "false negative" as there is too much at stake.

    Best Wishes,
    MRDAD
  6. munch1958

    munch1958 Member

    I anwered your post on the main board. But will repeat it here for Lymies:

    I have had multiple Lyme rashes (1969, 1974 and 2001) but I test NEGATIVE. I do have many bands that are positive but they are the WRONG ones to report my case to the CDC.

    Scientific info for you and your doctor. Be sure to sign the petition and read the journal articles:

    http://www.lymecryme.com/

    Here are the reasons why you can test negative:

    Source:
    http://www.anapsid.org/lyme/lymeseroneg.html
    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.

  7. dmariesmith

    dmariesmith New Member

    Thank you sooooooo much for this info munch1958!!!! I am taking it with me, apparently there is a nasty outbreak of flu @ my Dr's office...so I don't have an appt yet and don't know what sort of reception I will get with this, but I have a plan B.

    Thank you, everyone, I sometimes feel lost, it helps to know you are out here!
  8. victoria

    victoria New Member

    take a look at this specifically:
    http://www.publichealthalert.org/APR-page-3.html

    (publichealthalert.org publishes online a monthly free newsletter about lyme.)

    all the best,
    Victoria

  9. zena01

    zena01 New Member

    When I wanted a lyme test and asked my doctor and told him i wanted it through IGeneX he said ok, but he didn't know about IGeneX go see Sam in the Lab. Sam had never heard of IGeneX either. So, I went to their website, emailed them for a kit and took that in, DR.signed it, took it to the Lab, and Sam took my blood and put it in the Fedex package with my check and sent it off.

    You do have to pay them up front because they do not bill insurance BUT, they send you a receipt to send to your insurance company to get reimbursed. (I had to call and ask as they forgot to send me mine but I did get it and send it off - I checked their website the other day and it's in "processing" so hopefully they pay -- I'll let you know. They would almost have to, ordered by my doctor, the results were positive.

    I'm just saying this because if I hadn't known about needing the Igenex test, they probably would have ordered an ElISA which probably wouldn't have did me any good......so unless you are prepared when you go in to your doctor, you might not get the right test that you need.......

    take care,
    Sherri
  10. hopeful4

    hopeful4 New Member

    Your best bet is to find a LLMD. You can do that by going to lymenet.org, click on Flash Discussion, then Seeking Doctor. Post the area where you live, and you should get some answers.

    Another idea is to contact Igenex labs, give them your zip code, and ask if there are any docs nearby using their testing.

    Keep in mind that lyme disease is a clinical diagnosis. A well-informed lyme doctor bases the diagonosis on your symptoms, history, possible exposure, and is supported by labs, but negative labs do not exclude lyme and/or other tick-borne infections.

    Once lyme is chronic I feel it's best to find an experienced lyme doc. Good luck.

    Well wishes,
    Hopeful4
  11. hopeful4

    hopeful4 New Member

    Read up all you can on lyme. One suggestion is a new book called "The Lyme Disease Solution" by Kenneth Singleton, M.D. His website is lymedoctor.com

    How far are you from Maryland? That is where his practice is located.