Welp, the tests are back.

Discussion in 'Lyme Disease Archives' started by foggyfroggy, Jun 4, 2008.

  1. foggyfroggy

    foggyfroggy Guest

    Drum roll please. . . .

    CD-57 = Positive

    IGeneX = Positive

    IGeneX Confirmation = Positive

    C4A = Really high, but I haven't talked to the doctor about what that means.

    So I guess it's time to pull out the Champagne and black crepe 'cause after all, it's a good thing to find out but a sucky thing to have.

    Die Lyme Die!!!!!

    Gretchen
  2. victoria

    victoria New Member

    to the club.... it's truly nice to finally know, but, I totally understand the dread at the same time!

    Do you know if you got + all the 5 bands for CDC's surveillance purposes? Just wondering, as not many have...

    Die Lyme Die!!!!

    Hope you posted on the main board that you came out positive? (Sorry, haven't looked there yet) ... Cuz the more people post about their re-diagnosis, the more people will become interested!

    all the best!
    Victoria

  3. buttercakes

    buttercakes New Member

    Congrats!!! Welcome to the club. Happy healing. sandie
  4. bunnyfluff

    bunnyfluff Member

    Nice to have you in the Die Lyme Die club!

    So, now you have some answers, and some hope! Feels pretty good, doesn't it?

    The hard part is still coming, but you will have lots of help to get thru!

    It's hard to treat, but better than just being "sick" the rest of your life.


    Die Lyme Die!!

    Bunny
  5. foggyfroggy

    foggyfroggy Guest

    Thanks for the welcome everyone!

    Victoria - no, I was IGeneX positive; I had 4 bands positive and 4 indeterminate. Yup, dread's the word. I haven't posted on the main board but I will.

    Sandy - thanks for the well wishes!

    Pepper - Yes, the C3A and C4A have something to do with Lyme, I don't remember what though ;-)
    I wish the durn doctor would call me - they sent me the results in the mail but my appointment isn't till the 17th so I guess I'm just supposed to sit here and wonder until then.

    Bunny - thanks for the support! I guess the scariest thing is the fact that I have neuro Lyme; almost all my symptoms have to do with my poor brain. Obviously the cognitive stuff, but coordination problems and seizures which are thankfully controlled with the Lamictal and Xanax. If my doctor hadn't tried the Lamictal I believe I would be dead now. So anyway, I keep hearing the neuro is the hardest to treat, but like you say, I do have answers and hope. And determination!

    Gretchen

  6. bct

    bct Active Member

    Congrats., I guess.

    I see you have neuro-b. symptoms. That is what I have, but have only come up with 3 Inds. on my Igenex 2 yrs. ago. You are also on the west coast like me.

    I have NOT been officially dxd. with Lyme, but I do think I have it. Ticks all over the place here, deer population is OUT OF CONTROL.

    I was not considered to have Lyme because of no positives, and 4 Inds. I have CFS with peripheral neuropathy of unknown etiology. I have lived in the woods for over 30 yrs., and have picked so many ticks off of me! I only wish I knew then what I know now: I would have taken my bull's-eye rash and shoved it into the doc's. face!

    I've kind of given up hope at this point; don't know if I should repeat the Igenex again or not. And then the problems of finding an LLMD.....

    Well, Foggy, good to see you in the garden over in Chit-Chat!

    Regards,
    Barry
    [This Message was Edited on 06/05/2008]
  7. foggyfroggy

    foggyfroggy Guest

    Hi Barry

    I had to take Doxy for a month to stir the bugs up, then I took a month off (you have to take at least 2 weeks off) after which I took the test. There's some name for doing it this way but even after finding out what I have, my cognitive abilities haven't improved ;-)

    I had taken the IGeneX test before and come up indeterminate also, but like you, have had lots of tick exposure so took the extra steps and extra tests to try to find out one way or another. I just couldn't get the idea out of my head. Now, if I can just get the nasty little critters out of my head!

    See you in the garden :)

    Gretchen
  8. mrdad

    mrdad New Member

    Welcome to the Club! As you most likely remember, I too was

    diagnosed by Igenex. Interesting to note , however, that

    when I called them about my results being late, they told me

    that the results (under state law) could not be sent to me

    but only to my Doctor. It's interestng that Igenex sent your

    results directly to you the patient. Possibly, it's just a

    matter of differing State Law in that regard. (?) (?) I wonder

    if Erica, here in SF, received Her Igenex test directly or

    was it sent to Her Doctor?

    Were you able to get any "bites" on a LLMD anywhere close to

    you? Did the Health Center in Longview offer any infor-

    mational help?

    Now you have definition Gretchen, and you are a long way

    from where you were the other Day!!

    Best Wishes Kiddo!
    MRDAD


    [This Message was Edited on 06/05/2008]
  9. foggyfroggy

    foggyfroggy Guest

    Well hello!

    I actually had my doctor at the FFC mail me the 'patient copy' of the results that IGeneX sent him; they didn't send it directly to me. Sorry that was unclear!

    I think the Longview center sounds knowledgeble, it's just kinda far away. That may be the option I take though. There is another clinic here in Canby I am going to check out too; the only problem being that I'm not sure I can get insurance to pay because the person who handles Lyme there is a Naturopath. They do have an MD on staff I think though. The Naturopath has worked with the guy in Redwood city so should be knowledgeable. (?)

    In fact, I'm waiting for a bit to try for a LLMD because Rogers insurance is in the process of changing to a different carrier so I'm waiting to get the rundown on what is covered and what is not. As you know, life gets expensive in a hurry if nothing at all is covered for a particular doctor.

    I have an FFC appointment on the 19th, so I'll play it by ear from there.

    As far as being a long way from where I was, you're right! Unfortunately, the short term result of that seems to be that the Doxy is making me sicker than I've been for awhile, so where I am is in bed. Sigh.

    Have you found a doc yet? I know you were looking into going to the university - is that still 'the plan'? How about that guy in Redwood City? There is another one in LA also, right? Forgive my awful memory. If insurance won't pay - that is the real stinker! Too bad your PCP is being difficult! Keep me posted!

    Love,
    Gretchen
  10. mrdad

    mrdad New Member

    I believe the Doc in Redwood City also does a once a month
    in Malibu. L.A. is just too far away to even consider at
    this point. The Doc in Longview's name at the Family Health
    Center begins with a last name of "C". (I'm unclear as to
    ifin' we are allowed to use names on this website) (?)(?)
    Although I see others have done so.

    My "master plan" is to see my Hematologist at my appt. early
    next month. I will inform the R.N. there (who knows me well)
    that I intend to request a referral to UCSF Teaching Hospital
    Lyme Literate Doc. The hematologist has referred me in the
    past to a Rhuemy there for my CFS. So I at least know, it
    can be done, if their is a specialist on the other end of the
    request.(?)(?)

    Maybe, Gretchen, the being ill thing is "Herxing" from the
    Doxy that I would assume would be a "good thing"? It would
    be great if the Doxy was intervening already!

    My conversation with my Daughter indicated that one of the
    three Docs in Chico was one that treated her LYME about
    12 years ago! I can get there on the "Anthrax" Train and
    I know lots of friends that would lend me a sofa to sleep
    on! One thing at a time I guess?

    I wish you well, and please keep me informed as to your
    little "adventure".

    Huggles,
    MRDAD
    P.S. Oh, my Wife and her husband live 1/2 hour out of Eugene
    too! You're probably neighbors.