New to possible Lyme. Basic questions Please.

Discussion in 'Lyme Disease Archives' started by pepper, Sep 26, 2008.

  1. pepper

    pepper New Member

    I am still getting over an episode of sepsis in July and am incredibly exhausted. Otherwise I would wade through all the information on this site and find the answers to these questions myself.

    I have had "CFS" for 15 yrs. Now I wonder. My doctors have long suspected that I have Lyme disease and/or mycoplasm and I even tried low dose ABX which gave me bad herxing. I had to go off them because my liver enzymes went crazy.

    While I was in the hospital for the sepsis, I was on IV Flagyl, Cipro, Clavulin and Pip**** and after a few days I felt better than I have in years. That convinced me that Lyme or mycoplasm are a real possibility.

    I saw the Infectious Diseases doctor last week and he is unwilling to even consider Lyme.

    Bottom line, I will have to fight to get tested and have to go to the U.S. for treatment.

    Question: How accurate is the Western Blot?
    Is there a chance of getting a false negative on this test? Especially after 15 yrs of illness?
    How much does this test cost?
    I understand that there are tests for coinfections that should be tested for on another test. Is that so?

    Thanks for any info. I am sorry that I am so clueless with this.
    [This Message was Edited on 09/26/2008]
  2. mrdad

    mrdad New Member

    Sorry that you are not doing well! Hopefully some of your
    questions can be addressed here on the forum.

    I suggest that you get tested by Igenex in Palo Alto Ca.
    They can also test for co-habiting diseases associated
    oft times with Lyme. There # is 1(800) 832-3200. The call
    may well be worth your money and effort. I was tested there
    "in person" as I only live about 40 mins. North In S.F.
    You will need a Doctor to sign for the test. But for accurate
    info, phone them with a list of your questions in hand.

    As with most tests, there can be both false positives and
    Negatives! This lab, however, is highly respected in the
    Lyme community. The're like a "specialty shop".

    The first thing is to get a confirmation of the disease.
    I understand that if the Lyme is "old Lyme" it may be more
    difficult to discover anti-bodies associated with Lyme. Thus, the test may not be indicative of the true progress
    of the disease.(?)(?) Likewise, you will need to have a
    Doc who later can a accurately interpret the written results. (My CNP nearly interpreted my test wrongly as

    Upon a "positive Lyme Test", read all you can on the subject. Check your local Library (on line if possible) for
    books on the subject. I've found them to be helpful. Other
    Lyme Websites are also at your disposal. Best wishes in your endeavor!


  3. pepper

    pepper New Member

    Lucky you living in the U.S. where they take this disease more seriously and actually treat it. Not to mention being so close to the lab!

    All the reading I have done suggests Igenex so I guess that is the place to use. I see my CFS doctor on Tuesday so I am hoping that he will arrange this for me.

    I guess that the LLD's don't do treatment without positive test results? Even with all the symptoms?

    I understand that the test costs $1000. Can that possibly be true?

    Thanks for your help, mrdad.
  4. mrdad

    mrdad New Member

    My Igenex Test, inclusive with the Western Blot was $400.00.

    Igenex will send you the "Kit" via Fed Ex, I believe. Your

    Doc can do the blood draw. I suggest that you get it to the

    Igenex Lab here in California ASAP to ensure freshness. Do

    it early ( like on a MOnday) and send it FedEx to Palo Alto

    Lab. Don't want it layin' in some P.O. all weekend! Is your

    CSF Doc a believer in LYME? Some are not.

    About half the people diagnosed with Lyme have never had

    a known tick bite. A diagnoses is based on "clinical evi-

    dence" not just the Lyme test itself; a combination of

    variables pointing to the probability of Lyme.

    I'm happy that you have decided to take some action in this


    [This Message was Edited on 09/26/2008]
  5. pepper

    pepper New Member

    $400 doesn't sound quite so bad. I wonder if it is different for us sending it across the border. I will find out from my CFS doc on Tuesday. That is good advice about getting the samples out on a Monday.

    My CFS doc does believe in Lyme disease and actually tried treating me with alternative treatments. But I had such strong reactions to them that he had to stop. It just reinforced his belief that I do have a stealth infection of some kind though.

    Then my family doc did the Doxycycline treatment with me and my liver went wonky. I need a doctor who knows what s/he is doing. There are people in this city that are being treated by a dr. in NY. That is probably what I would have to do.

    Thanks so much for your help.
  6. mrdad

    mrdad New Member

    It's great that your Doc is on your side. It isn't unusual to
    to become "ill" (Herxing) while on Doxy. It may be the beginning of purging one of the Lyme or other bacterium. How
    ever, I can understand your Doctors concern as I likewise have
    liver problems. Mine is the result of Hemochromatosis (a blood disorder) rather than Lyme. I too am just now attempting
    to get more adequate attention to my Lyme. should be able to send you the name (via email) of a Lyme Doc in your area or N.Y. You submit them
    your Postal Area Code and they will sent you that info. It
    may take a few days for a response as they are busy volunteers.

    "Lyme Disease", by Len Yannielli is a short (90 pages) on the general subject of Lyme that may be beneficial to your
    knowledge of the subject. I suggest you attempt to find a
    support group on CFS, FM and Lyme in your area. It helps to
    be in contact with others of like situations as you will find here on this Forum.


    [This Message was Edited on 09/26/2008]
  7. pepper

    pepper New Member

    I have found a support group and will definitely follow up with LymeNet and the 90 page book. That is about all I can handle right now.

    You have been a great help!