Possible new Lymie from CFS Board

Discussion in 'Lyme Disease Archives' started by mariner8993, Dec 6, 2007.

  1. mariner8993

    mariner8993 New Member

    Hi all, I just posted this on the CFS board and it was suggested I jump over here for some possible clarification. Just a quick little background on me - I had mono from Sept-Dec of last year (strange for a 35 yr old male!) and thought I was over it. August of this year became ill with all kinds of symptoms which are common for CFS, Lymes' and a multitude of other things. My EBV titers were 3 times as high as they were when I had acute mono last year but that was shrugged off. So after 4 doctors including a gastro, numerous blood tests, cat scans, ultrasounds, and an endoscopy which all show nothing I find myself here today.

    Here's what I posted on the CFS board:

    "Just got back from my ID and he had all my blood results - everything looked normal as always, the usual sed rate of 1 and the hopefully good news that it may have been Lyme's that set this off and made my EBV titers so high. My H pylori was positive as well so he's gonna treat me for that too.

    I'm still a little skeptical because only 1 of the tests was positive - the Lyme Disease screen AB w/RFX was positive, but all of the western blot bands were non-reactive/negative. Can anyone with Lyme's experience verify this for me?

    Anyway, I picked up a chinese food sized bag of antibiotics today and hopefully if it is Lymes is will wipe that out and take the EBV with it!! I know the viruses will always be with me but take away the symptoms and I'll be thrilled.

    Has anyone else had this experience?"

    Any help would be appreciated!

    Thanks,

    Jim
  2. victoria

    victoria New Member

    was your Western Blot done at IGenex (other labs can do the blood draw, but the results sheets should have IGenex's name on it as where it was analyzed). IGenex gets the highest reliability rate, but, it is only 70% reliable... the other labs have much lower rates or reliability.

    From IGenex's site, this is what they said about EBV & Lyme testing:

    "...Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease."

    so, *I think* they're actually saying the opposite interpretation, if my brain is working right?

    At any rate it is not unusual to get a negative yet still be positive. Those who have had it for a while can show up negative on the WB as the lyme may not be active in your blod........

    but when later tested after taking abx for a while, come up positive. It would be interesting after you're done with the abx for the h. pylori etc. to get re-tested and have your blood sent to IGenex specifically.

    It will also be interesting to see if you get a herx reaction while taking what your doctor rx'd, altho I'm not sure what abx you are taking (may not be specific for lyme?).

    this board is a bit slower, but everyone is good about trying to answer...... you could also maybe look at ilads.org and lyme flash net.

    All the best,
    Victoria



  3. highcotton

    highcotton New Member

    Is your Infectious Disease doc a LLMD (Lyme Literate MD)?

    I've learned that it is crucial to be treated by someone who really understands the intricacies of Lyme.

    It is a complicated illness with possibilities for many co-infections, so please please see someone who knows the answers to your Lyme questions -- or at least knows what the questions are about.

    The coinfections may have to be treated with different antibiotics or other meds -- that's why it's so important to get good help. And to get your blood sent to the right labs.

    (It's hard for some of us to read large paragraphs of text -- our brains can't sort it out-- so we like to separate the text when we can.)

    I am so glad you are checking out Lyme now. When you wrote that you don't know how some of us have lived with this for so long -- I don't either! It can really be hell--but here we are.

    Congrats on getting on your way to recovery.

    You can see Lymenet.org for a whole lot of info. Or use the search key above to search topics here.

    best,
    highcotton

    p.s. Die Lyme DIE!

    repeat until cured

    [This Message was Edited on 12/06/2007]
  4. justjanelle

    justjanelle New Member

    My rash was in 1990, and I've just begun treatment for Lyme Disease. So I don't think it's "too late"...

    Good luck!
    Janelle
  5. munch1958

    munch1958 Member

    How are you doing on Abx? Did you herx? or get worse?

    If yes....this is probably all the confirmation you need. Overall, if you got your diagnosis from IDSA doc run with it.

    That branch of medicine hardly ever diagnoses Lyme because it's "rare" and "hard to catch" plus the tick "must be attached for more than 24 hours".

    As someone said over on Lymenet "what was it doing for the first 23 hours? saying Grace over it's blood meal?"

    I'd be concerned about getting open ended treatment or more than the 5-6 weeks IDSA docs prescribe Abx for. After that it's "post Lyme auto immune disorder" if you still have symptoms. That's when I'd hunt for a LLMD.

    Who knows you could be one of the lucky few to get better with ID doc!