Which Lyme Disease test do I need to ask for?

Discussion in 'Fibromyalgia Main Forum' started by becc, Nov 27, 2005.

  1. becc

    becc New Member

    Hi,

    I saw a post about Lyme Disease a couple of days ago and it mentioned that you need to be sure you have the right test(s) done. I can’t find the post now – could someone explain the difference between the tests that are available? I’m in Australia and don’t know how prevalent Lyme Disease is here but I’ve travelled all over the world so could have been exposed in another country. I’ve had severe ME/CFS & FM since I was 14 (almost 11 years ago) and my doctors determined when I was first diagnosed that I had had EBV and another ‘major’ illness but they didn’t know what the other illness was. I’ve never been tested for Lyme Disease.

    I’m basically housebound and, a large percentage of the time, bedridden, so after reading about the number of people here who have been diagnosed with it, I think I’ll ask my doctor to refer me for tests. Does anyone know of any LLMDs in Australia?

    Thanks for your help,

    Becc

    [This Message was Edited on 11/28/2005]
  2. becc

    becc New Member

  3. becc

    becc New Member

  4. TwinMa

    TwinMa New Member

    I haven't been tested for Lymes, but from what I have read, the IGeneX test is far superior to the Quest Diagnostics test. It is supposed to be more sensitive and picks up positive cases of Lyme that are missed by Quest.

    Do a Google search for IGeneX. That is the way it is spelled, too. Capital IG & X, rest is lower case. I'm not sure if they would service Australia or not.

    I'm sure other Lymies will weigh in on this.

    Good luck!
    Katy
  5. karatelady52

    karatelady52 New Member

    The test you need to ask for is the Western Blot and the lab is called Igenex. The Elisa is a very unstable test which is the one most doctors use.

    Lyme is also a clinical diagnosis and not just a blood test because of the inconsistencies in the tests. You can have several negatives before a positive shows up.

    You can go to Lymenet dot org and in the medical section, I have asked for any LLMD's near your area. If they respond, I will let you know.

    Sandy

  6. becc

    becc New Member

    Thanks, TwinMa and karatelady. That's exactly what I was looking for - I'll talk to my doctor about the test this afternoon.

    And thanks, karatelady, for asking about LLMDs for me! I saw a reply to your post and will have a look at the website mentioned.

    Bec :)
  7. happygranny

    happygranny Member

    My Lyme doctor did a 'clinical' diagnosis, meaning he found after examination and questions that I had all the symptoms of Lyme disease. He ordered blood tests for the Lyme bacteria as well as 5 of the possible co-infections. The test for the Lyme that is done in Canada is the ELISA, which is not dependable so I am not counting on the results of that and I am not ready to spend the $$$ for the Igenex test in the California lab.

    In the meanwhile,I started the ABX protocol and within 24 hours I was herxing and it has continued now in day 6, and getting stronger.

    My doctor told me that the only other kind of bacterial infection that could cause this kind of herxing would be a Syphilis infection. I am sure I don't have that. For me thing it is very rare, for another I did not have any of the early symptoms such as vaginal sores, and although I do have cognitive and memory problems, I don't have any of the 'craziness'that comes with late-stage syphilis.

    So, I don't think I need to spend the $$ for the Igenex test, although I guess it would be reassuring to see it in black and white.

    At this time with the Clinical Dx and the herxing symptoms, I am convinced that I have Lyme.

    happygranny
  8. karatelady52

    karatelady52 New Member

    Oh good, I forgot to look! Is it anywhere near you?
    You may get some more replies later.

    Sandy
  9. springrose22

    springrose22 New Member

    And the lab is Quest, but I imagine many other labs do it as well. Marie
  10. cobie

    cobie New Member

    Hi Becc, Cobie here, I found some stuff on lyme in australia under the following, http:// medent. usyn.edu.au/fact/lyme%20disease.htm//clinical its from the dept of medical entomology university of sydney,and they talk about the need to do the western blot. let me know if you find it? Is this for Burnett?? good luck Cobie
  11. karatelady52

    karatelady52 New Member

    I found an e-mail of a lady in Australia that will probably be able to help you. I just wrote her today so maybe she'll write back and I can give it to you over on the lyme board.

    Sandy
  12. kch64

    kch64 New Member


    What type of herxing symptoms are you having??