What Lyme tests should I get?

Discussion in 'Lyme Disease Archives' started by erica741, Feb 28, 2008.

  1. erica741

    erica741 New Member

    I normally post on the CFS/FM site, and am here looking for the "expert opinions" on Lyme testing.

    I have had CFS since June 2006. My symptoms have always been limited to fevers, fatigue, and brain fog (no pain or other issues). I tested for high viral titers of HHV-6 and EBV, and finished a 6-month treatment of Valctye in mid-January.

    However, I am still feeling exhausted all the time and am running fevers. My doctors think my illness is entirely viral-related, but I would like to rule out Lyme and any other probable isses.

    I know I've tested negative for lyme before. However, I have not gotten the Igenex Western Blot, which seems to be considered the best and most sensitive test for detecting chronic lyme.

    I want to get the tests done early next week. I have an awesome lab technician who has called Igenex for me and gotten a lot of information regarding what tests to request. Igenex told her I should get:

    #188 - Lyme Western Blot IgM
    #189 - Lyme Western Blot IgG

    I got this test requisition form on Igenex's website: http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

    I'd appreciate any feedback on what tests I should get. Are 188 & 189 the best tests? Should I get any additional tests?

    I figure that if I am sending my blood to Igenex, I might as well rule out everything I can.

    Thanks in advance for any advice and input!

    Erica




    [This Message was Edited on 02/28/2008]
  2. victoria

    victoria New Member

    those are the most important and most reliable.

    When my son was tested, he was also tested for the common co-infections as well as things like mycoplasma, chlamydia pneumonia (cpnhelp.org) and other stealth bacterias. However the reliability of these is much less than the IGenex's WBs, so none showed positive altho it became clear he had bartonella and babesia.

    Unfortunately much of treatment depends on a skilled clinician or a doctor who can consult with one at least...

    Good luck!
    Victoria

  3. mrdad

    mrdad New Member


    ---world. I'm in SF too!! I went to Igenex lab in Palo Alto as I wanted my sample to be freshly given and
    not rely on the mails. It only took about 35 mins to get
    their.

    Have you spoken with your Doctor about the "differences"?
    I believe for me they did the test based on THEIR recommendation. It came to about $400.00 money well spent
    to find some definition to my ongoing illness.

    Victoria will most likely see your Post and contribute some
    useful information that may answer your question. I'm not
    sure what those nos. refer to as I see no numbers preceeding
    my Western Blot description??

    Good luck Erica!
    MRDAD
  4. erica741

    erica741 New Member

    Thanks for pointing out my typo! (I just fixed it.)

    Thanks also for calling Igenex! Are you thinking of getting tested? If not, that is absolutely the nicest thing a stranger has ever done for me. Either way...thanks!

    I actually just called Igenex too, and spoke with the person that my lab technician previously spoke with. She clarified that I DO need authorization from my doctor. She also recommended starting out with just tests 188 and 189, and then doing additional tests based on those results. (Apparently doing more tests would unnecessarily expensive before getting the basic tests).

    Thanks again for your help!

    Erica
  5. mrdad

    mrdad New Member


    Yes, it must be the same Western Blot I got. As I recall, it
    was $380.00 and $20. 00 for something else, probably takeout
    Lunch for the two office gals from the local Chinese Joint!

    Ya there Erica???

    MRDAD
  6. erica741

    erica741 New Member

    Thanks for the info! Unfortunately, I don't have a doctor who is guiding me on lyme testing. I have taken upon myself to get tested based on what I have read on this site. I figure there have been enough people with CFS who later found out they had lyme to warrant getting an Igenex Western Blot.

    As of now, I am seeing my internist and Dr. Montoya at Stanford. My internist has never heard of Igenex and doesn't have in-depth knowledge of chronic lyme, but she supports every test or treatment I want to pursue. She has already written an authorization for a Western Blot Lyme test on a prescription sheet, which is enough for authorizaton for Igenex. But I wanted to be fully informed before I spent the money to get tested.

    Victoria: Thanks for all of your advice to my posts regarding lyme testing.

    MrDad: Were you diagnosed with lyme? Have you seen a lyme or CFS specialist in the SF area? I'm always on the lookout for my "next step" in the event that I do not recover from the Valctye and other anti-viral treatments through Dr. Montoya. Dr. Montoya says I need a few more months of rest to fully recover, but I still want to have a game plan if I don't get better in that timeframe.

    Thanks again to both of you!

    Erica
  7. mrdad

    mrdad New Member


    If you look down the Forum to Krista's Post about Lyme and
    Babies, I've left a message that discloses my long , sad and
    boring story. Visit the Post, and don't miss a word!

    Anyway, Erica, I've only recently confirmed years of suspicion
    on the prospect. My daughter (30 y.o.) has had Lyme for at
    least 12>15 years. She's doing "well" as they caught it early.
    I'm half-way thru my abx of Doxycycline, two weeks to go.
    They don't deal with Lyme much here in SF but will attempt
    to find a Specialist at UCSF Hospital via my Doctor. If you
    should hear of one first, let me please know. Rather surprised
    that Montoya isn't more familiar with Igenex as they are BOTH
    dealing with similar (if not possibly at times) overlapping
    illnesses??

    Keep in touch. Hope you're enjoying our weather today!
    MRDAD
  8. munch1958

    munch1958 Member

    Have you read her story?

    http://www.canlyme.com/amy.html
  9. mrdad

    mrdad New Member

    I do wish to thank you for the reference to Amy Tan article

    and to the name of her SF Lyme Doctor within. I'll look

    it up and inform my N.P. of his practice.

    Hope you are doing well. This informaton may be at sometime valuable to Erica as well.

    MRDAD

    [This Message was Edited on 03/03/2008]
    [This Message was Edited on 03/03/2008]
  10. mrdad

    mrdad New Member

    I just spotted your question on the Thread. Yes, I did go

    to Igenex in person as I'm in San Fran. and Palo Alto is

    only about 35 mins. away! Did have to get my C.N.P. to

    have the M.D. sign the paperwork for Igenex.

    Hope you are feeling "well"!
    MRDAD
    [This Message was Edited on 03/12/2008]