Just Tested Positive For Lyme Disease

Discussion in 'Lyme Disease Archives' started by pw7575, Oct 10, 2008.

  1. pw7575

    pw7575 New Member

    I posted this on the CFS board as well. I can't believe I tested positive for Lyme. I am in complete shock right now. I have no idea what to think or where to begin. But you can add me to the running tally of people that now have Lyme. How many is it now?

    Hi Everyone,

    I just got back from the doctor and it turns out I have Lyme Disease. I have been sick for 7 years with CFS or at least I thought it was CFS. I guess it was Lyme this whole time. I wasn't expecting this. I am in total shock.

    I had a doctors appointment on Monday for some abdominal pain I have been having. I told him that I have CFS which he didn't seem to know too much about. He asked me about it and I told him my symptoms and how it started out like a horrible case of the flu that never got better. He then immediately asked me if maybe I have Lyme Disease. I said I didn't know so he said he wanted to run a Lyme test. He ran another Quest Diagnostics Lyme test on Monday and I got the results today and it was positive for Lyme Disease.

    I never thought the Lyme test would come back positive because I was tested (through Quest) when I first got sick and it came back negative. Now I have read that it sometimes doesn't show up right away in the blood so maybe I got tested too soon back then for it to show up.

    I am in total shock. I am not sure if I have Lyme and CFS or if it has just been Lyme the whole time. I think it probably has been Lyme all along. I got sick when I was on vacation in the mountains so it is possible that I got bitten by a tick while I was hiking in the woods.

    Anyhow...just wanted to share my news with everyone.

    Take Care,
  2. mrdad

    mrdad New Member

    I'm sorry that you have been ill for such a long time. What
    are your next plans for Lyme treatment? It seems that some
    anti-biotics may be in order here? Have you found a Lyme
    Literate Medical Doctor (LLMD) yet? That seems essential.

    Half the people diagnosed with Lyme have no recollection of
    having been bitten. Neither did my own Daughter who was
    diagnosed with Lyme about 14 years ago, whom through early
    intervention, is now doing "well".

    There are many very kind and knowledgable people on this
    forum who gladly help when asked. Do hope you will take
    advantage of that opportunity.

    I might suggest the possibility that your long time CFS
    is a symptom of Lyme prevalent among most if not all of
    us carrying the disease. You may also have other bacterial
    co-infections.(?) Viruses may likewise be involved, all of
    which must be investigated through testing.

    Hopefully, we shall hear from you soon!

  3. victoria

    victoria New Member

    They carry many!

    So it would not be unusual for you to have other infections, as well as opportunistic viruses.

    Or, you may have had a bad bout with one or more viruses first that then weakened your immune system and allowed lyme & co(-infections) to reproduce mightily after remaining subdued.

    Sadly the blood tests for all of these things are very unreliable. Best is the IGeneX test for lyme, and at that it's only 70%.

    I was told by my son's LLMD and have read many times over that testing for many of the other typical tick infections that are found with lyme, like bartonella, are less than 50% reliable.

    That's why the CDC says these dx's should be made on the clinical picture, not solely on the basis of blood tests.

    Tests can be helpful IF they show positives, obviously; but bottom line is some trials with different abx to see how you respond.

    Most people don't know they have Lyme etc as most often the only symptom is getting the 'flu'... even if you have a Lyme rash, it may be in a place not easily seen, like on your scalp. Bartonella can look like scratches. And they can present atypically. Add to that that it's been estimated the majority don't even get one (my son didn't, and neither did my daughter's BF, for starters).

    The count is up to 95 after I just scanned the past 6 months, but there are many others not on the list from prior months here...

    plus, I remember before there was a lyme board here people looking for help and following up immediately about lyme, coming out +, and not returning once they got the dx.

    So sorry you've joined the Die Lyme Die Club, Pam, but glad you found out!

    all the best,
  4. pw7575

    pw7575 New Member

    I don't have an LLMD yet. I have some names of some in my area though. I wish these doctors participated in insurance but it seems like none of them do. The doctor that diagnosed me gave me a 30 day prescription of doxycyline but I don't think she is knowledgeable about lyme so I doubt she knows how to treat it effectively. I will need to find someone.

    Thank you both so much for all of the information and suggestions. I have so much to learn. I started investigating lyme just recently thanks to many of you here that have been posting about lyme. I was so glad that you all persisted even amongst some nay sayers here. But now that I have tested positive I really have lots more to learn so I certainly appreciate any and all suggestions you all have.

    Jam338 and Grammy27 have been so kind and helpful as well on my post on the CFS board. You all have been so kind and I appreciate that. It has been an emotional whirlwind of a day for me so I do appreciate everyones help and kindness.

    Wow 95 people now with Lyme. It really is so much more prevalent than people know. I hope others get tested.

    Now I need to get to bed and get some much needed rest!

    Thanks Again!
    Pam :)
  5. mrdad

    mrdad New Member

    You may find it interesting to see Kathy's Post on Lyme that
    I just "bumped" to the top of the page. Her Post explains
    the ongoing controversy involving Lyme treatment.

    I too was administered 400 mg of Doxy for 28 days, and another
    28 days without any improvement. This is the extent of the
    mandated medical protocol and guideline followed by MOST Doctors. But then again, I feel that my Lyme was acquired
    over 30 years ago in the Sierra and had possibly remained
    "dormant" for most of those years. Doctors working beyond
    the recognized, but often more aggressive protocol, are in the minority. This evidently gives Insurance Companies reason not to cover treatment outside the recognized

    It would help to read as much as you can on the subject of
    Lyme. Check you local Library (possibly on line) for books
    on the subject. There are other Lyme websites as well.
    I'm just starting to learn myself and so apprecitive of
    people on this Forum who have added to my knowledge.


    [This Message was Edited on 10/11/2008]
  6. pw7575

    pw7575 New Member

    Thanks Mr Dad! I did read that article that you bumped up. Some good info. I have lots of research to do :)

    Thanks Again,
    Pam :)
  7. victoria

    victoria New Member

    also check the library here about articles...

    and there's also 3 posts that many have contributed info to that are just a few posts below yours right now that generally are bumped back to the first page:


    HELP REDUCE HERXES = Suggestions/thoughts/Experience? ADD ON

    LYME LINKS, INFO & PROTOCOLS SITES == please add on!

    Sometimes I get really overwhelmed with so much info and so many 'unknowns'.... yet it is also really interesting.
  8. pw7575

    pw7575 New Member

    Thanks for the info Victoria. I will check out those threads. I may have already read some but not sure since I have been reading so much Lyme stuff the last 4 days lol!

    You are right...it is very overwhelming to have so much info but also very interesting. I think I need to slow down just a tad because the last 3 nights I haven't slept well because my mind just keeps thinking about all of this. I have even been dreaming about Lyme Disease! So I guess I should probably take a little step back today.

    I just spoke to an LLMD's office in my area. She sounds like a good doctor. I think she combines conventional and alternative treatments which is right up my alley. But boy this isn't going to be cheap!

    I think I am going to have to get my parents to help me with this although I would hate that. How does everyone afford these LLMD's? They don't participate in insurance and I am guessing I won't get reimbursed for any of it by my insurance company.

    Thanks again for all the help!

    Take Care,
  9. mrdad

    mrdad New Member

    One of the biggest problems here is that the Insurance Co.
    can deny a claim basing their justification on the IDSA
    protocol for Lyme treatment. I'm interested to see some reports
    to be published on last weeks TWO Lyme Conferences in San
    Francisco this past weekend. "Keep the Faith"!!