Lyme test "only a few bands"

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

  1. bettydroop

    bettydroop New Member

    What does it mean when the test for Lyme comes back and it says that there are TWO BANDS present/positive for Lyme?
    Thats what my test said - my Dr. said that I COULD be tested again with a more precice test, but because I have EBV sometimes that makes a false positive and or you actually need 5 bands for it to be positive for Lyme.

    Any Lyme people know if this sounds familiar?

    THANKY
  2. bettydroop

    bettydroop New Member

    I dont want to pass this by quite yet. This good ol board moves SO faaast----
  3. twitcher

    twitcher New Member

    The result depends on which bands are positive. You need 5 for CDC positive but lyme literate doctors will consider a test positive if only one or two bands are positive if they are significany lyme bands. How lyme-literate is your doctor? You may want to consider a western blot done at Igenex labs in California. I'm sure more people will respond to this post with some good info.
  4. hopeful4

    hopeful4 New Member

    Hi Betty,

    There are a number of different tests for Lyme Disease. Which one did you have? Please let us know. Often, the ELISA test is the first one given. It is not considered very reliable, and usually has false negatives. Many, many people who were first given the ELISA and came up negative, later took another test and came up positive.

    In your case, if you did take the ELISA and the results had a couple of positive bands, and you have symptoms, I would urge you to take the IGENEX WESTERN BLOT.

    My first test was ELISA, I was negative. Later I took a much more reliable test called the IGENEX WESTERN BLOT, and came out very positive.

    Next, and very important, is that Lyme Disease is a CLINICAL DIAGNOSIS. That means that it is based on one's history, symptoms, and lab work all together. Therefore, it is best to see a doctor who is very well-versed in Lyme. It is not diagnosed only on labs.

    Another quirk of the testing is that even people who have lyme may test negative. That is because in the blood sample taken lyme may not be present, it can hide in the body's tissues. I'm not very good at explaining this, but, I do know that if one first takes antibiotics for a short period of time, the lyme can then be more easily detected in the blood.

    Please take a look at the following from Dr. Burrascano's guidelines. He is one of the best known lyme doctors. If you have not yet read the full guidelines, please do. I don't know if I can give you the link, so here is the title to google.


    DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES
    Joseph J Burrascano, Jr., M.D.
    Updated September, 2005

    From Dr. Burrascano's guidelines:

    WESTERN BLOT IN LYME
    . Reflects antibody response to specific Bb antigens- they are reported as numbers called "bands"
    . Some bands are seen in many different bacteria- "nonspecific bands"
    . Some bands are specific to spirochetes
    . Some bands are specific to Bb
    . Positive blot contains bands specific for
    Lyme
    . Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93
    . Spirochetes in general: 41
    . Nonspecific: All others!
    . The more specific bands that are present, the more sure the diagnosis

    NOW THE BAD NEWS! PITFALLS OF THE WESTERN BLOT
    . Very difficult to produce and interpret a western blot
    . Bands do not easily line up
    . Appearance affected by subtle changes in temperature and chemistry of the test system
    . The specific strain of Bb used to produce the antigens may not match the strain the patient has!

    HOW DO YOU MAKE THE DIAGNOSIS?
    . Lyme is a clinical diagnosis
    . Even the best Lyme tests are only an adjunct
    . Use the ILADS point system


    GOOD LUCK!
    Hopeful4


  5. bettydroop

    bettydroop New Member

    appreciate it! Dr. told me that I might not want to investigate more because even if I did come up positive for it... I wouldnt like the treatments forit- at all-

    Are the treatments awful??
  6. victoria

    victoria New Member

    the best 'test' is to take abx for a month and see if you get a reaction/die-off - called a 'herx', short for herxheimer, short for jarisch-herxheimer effect: which is an exacerbation of symptoms. In other words, you'll feel worse.

    Also, many people who have had Lyme for a long time do NOT show positive until after being treated with abx for a while, as the spirochete bacteria can hide inside tissue cells anywhere in the body, and can also form cysts of immature spirochetes...

    so you may be infected, but the bugs may not be in the bloodstream when you have a blood test and no antigens.

    It's very important to educate yourself; read the Lyme board here and check out ilads.org ... and find a Lyme Literate MD (LLMD) who will know how to treat you. There is a huge debate going on over how to treat long-term Lyme... all I can tell you is that for most people, the longer one has it, the longer it takes to treat and see effects.

    all the best,
    Victoria



  7. bettydroop

    bettydroop New Member

    Thanks for the advice! I starter reading about Lyme this afternoon after I got couple of responses for this post.

    I live in Washington state and wouldnt even think I woul dhave it! Dont remember a tick bite thats for sure! But I heard that doesnt matter sometimes, so I know now- (yup been reading) No rash - no tick - no nothing. so weird. I guess I Do live in the "woods" so to speak, and used to go camping with a boyfriend ( sleep outside among other things ha ha( oh those were the days!!LOL I should go to the post on I remember when -that someone posted.) Ha.

    Thanks for the info- so much.
  8. victoria

    victoria New Member

    my son never had a rash that we or he knew of...

    He was tested at 17, and came up CDC positive, ie, all 5 bands they use for 'tracking' purposes were positive; there is one band that when it shows certain changes shows a person has had it for over 2 years, altho that's as far as they can say. Sorry I don't remember which band that is.

    Otherwise the only 'symptoms' of acute lyme/onset is feeling like you have the flu. Well gee, we've all had the flu...

    Good luck with treatment, hope you see results. Do make sure you see a LLMD tho, from what I've read and from watching my son be treated, normally 1-2 abx are given followed by flagyl to dissolve the cysts... hyperbaric oxygen can also help... IVs are a possibility altho my son has not done this.

    Also, the rule is usually there are other infections. They can be tested for, such as ehrlichiosis, babesiosis, and bartonella most commonly as well as mycoplasma, but the tests for them are even more unreliable than for lyme.

    From my son's unresolving symptoms over 22 months of treatment, it is felt he has bartonella and babesiosis as well as lyme, as his cognitive symptoms have been the most difficult to clear.

    all the best,
    Victoria

  9. munch1958

    munch1958 Member

    Here is a link to the CDC's tick map:
    http://www.cdc.gov/ncidod/dvbid/lyme/tickmap.htm
  10. jarjar

    jarjar New Member

    Lyme has been reported in all 50 states according to the Director of Igenex.

    There is a great Dr. in Poulsbo Wa. listed in the Dr. section above. Her main method of treatment is the marshall protocol.

    She is a recovered patient herself.
  11. Hootie1

    Hootie1 New Member

    I'm sure that your doctor was just trying to be empathetic, but his comment about not liking the treatment as it would have any effect on whether you would further research your problem- is just plain unprofessional and rediculous.

    Look, if there is even a slight chance that you might have lyme, you need to take care of it! A person with cancer doesn't like the treatment either, but she does it.

    Lyme, if untreated, is a very serious problem. Please find a good lyme doctor and don't even bother with anyone in between because this is not something to take lightly. There are many doctors who do not understand lyme and there are a few tests that are very unreliable as well. Please continue to find the answers and then work on the solution!
  12. bettydroop

    bettydroop New Member

    I really thought that was a WEIRD response.

    From the info from this site I have decided to get it done. Yippee skipee.

    I still wonder what that was supposed to mean? Whatever it is- I would need to treat it????
  13. Hootie1

    Hootie1 New Member

    Isn't this board great !

    What did you mean in your last response when you said:

    "I still wonder what that was supposed to mean? Whatever it is- I would need to treat it"?

    Are you referring to one of our responses or what the doctor said?
  14. bettydroop

    bettydroop New Member

    Oh Yeah... what I meant by that was how I didnt understand why a Dr. would make that comment- esp. a good Dr! Umm the comment about If I DID have Lyme -then I wouldnt like the TX for it. Then I meant how IF I was EVEN positive for it ...I WOULD have to treat it or do what ever it takes anyway because I couldnt just KNOW that, and then say, Oh well I dont want to do anything about it or anything. I agree that that was not a very good answer at all. Its just weird. I am now thinking (it IS possible with my ears these days lol) that I just heard her wrong. I hope that wasnt what she said or meant.

    So whatever the case may be I just sent my Lyme out for the Western BLOT test yesterday - first thing in the AM so we will see! I dont expect to hear for a week or so I guess so until then I wait and wonder. I am so glad that this board is here... I dont know if I would have gone for the next test (western Blot) and probably cont'd to wonder about those two little bands that showed up on the first one. Either way at least I will know. Thats good.

    Thanks, Karen Betty D.

  15. California31

    California31 New Member

    Talked to CDC in Colorado....years ago....was told tests were pretty unreliable at the time....a friend of mine swore she thought I had Lyme's.....rash....and other symptoms.....docs did not think so....
  16. Hootie1

    Hootie1 New Member

    Yes, these doctors! I walk out of the offices sometimes and think to myself, "did he really say that???"

    You did the right thing by bieng tested - that's for sure. I'm sorry, did you say that you got the Quest or the Igenex test because many people have questioned the reliability of the Quest test.
  17. moab341

    moab341 New Member

    I asked my Rheumy about testing for it and he said that it couldn't be an issue where we live. (Indiana)
    That the ticks that carry it are no where near here.

    Is that true?
  18. bettydroop

    bettydroop New Member

    I FIRST had the preliminary test at FFC and it came back with two band positive or whatever and last wed they did the western blot test. Not sure how long it takes to get back.

    Of course now that I went and did it---- I can hardly wait to hear what it says! HA!

    I wonder if they will tell me over the phone. EE GADS -if I have to wait till I can get an appt over there...before they tell me...oh no I hope not. I just wanna know.

    B droops
  19. munch1958

    munch1958 Member

    There's no Lyme in Illinois (where I live) either! Here is a link to a map of confirmed cases of Lyme disease by county in Indiana:

    http://www.in.gov/isdh/dataandstats/epidem/epi_news_archive/2000/2004/tick.htm

    We went on two camping trips 2 weeks apart so I'll never be 100% certain where I got bit. I was camping near Bean Blossom, IN (Monroe County) in 2001. I do not remember the return trip home. A difficult task considering I had to sit still on the back of a motorycycle for 7 hours. I had an insect bite on my leg with a red ring around it the size of a baseball.

    A few days later, I was hospitalized for 3 weeks in 3 separate hospitals with dehydration and brain inflammation or encephalopathy which turned into some sort of aphasia (inability to speak). Looking back it seemed more like a facial palsy because my entire face got number during the aphasia episodes. The whole incident was written off to "sarcoidosis" because I had an abnormal chest x-ray.

    I was positive on the Quest Western blot at FFC Detroit. They started me on Doxy then ran the Igenex Western blot. That was negative but there were several Indeterminate and Positive bands. The FFC told me to stop the Doxy. If they had used the ILADS point system in my case they may have caught the correct diagnosis. I'm seeing an LLMD next week.

    [This Message was Edited on 03/23/2007]
  20. Hootie1

    Hootie1 New Member

    Thanks for the info Munch.

    Bettydroop- Like you, I am very anxious to know the results of my test. What I plan to do is call igenex to get the results faxed. I think that if we sign a release and fax it, they in turn will fax the results (Quest did that for me last year). We will want to have a copy anyway, just in case the FFC doctor doesn't read the test correctly. Jeu. we've got to look out for ourselves, right?

    I should have the results by the end of next week, I am told and you bet that I will be calling starting Wednesday. Ha, ha...

    We'll stay in touch, ok...