finally found the culprit for my cfs

Discussion in 'Fibromyalgia Main Forum' started by jan a., Jun 6, 2003.

  1. jan a.

    jan a. New Member

    I have not been on the board in a long while since I was so sick...bedridden again..Ive been through the hhv6, and mycoplasmas that tested positive a few years ago and have been on antibiotics for a long time(doxcycline and famvir)...for awhile I felt somewhat better than last summer started to go downhill and was feeling worse despite all the meds I was christmas I felt so bad my doc put me on zithromax which helped for awhile then that didnt help doc was going to test me again to see where everything was at and I requested a lyme disease test about 7 weeks ago...tests take 3 weeks to come back...had one years ago that came back negative..he agreed to do it and sent blood to N.J. lab to perform three different lyme tests...well low and behold one came back positive....its common to get false negatives so sometimes it takes a couple of rounds of tests to get a positive if one is truly infected...I read its best to test when feeling really bad (flare)..I know not everyone has lyme but its worth looking now on different antibiotics (amoxocillin 2000 mg. per day) and finally after 3 weeks of this ( 2 weeks in bed )I feel that I am now responding..dont know if I will get well but I have hope this is what was behind all my sickness for so long ( 9 years, totally disfunctional the past 4 1/2 years). this may have been discussed (posted) here before,I dont know since Ive not read it in awhile but just wanted to share a possible cause for others...forgive me if this has been posted alot before....may you all find answers and health again as I hope to myself someday...god bless...jan a.
  2. Applyn59

    Applyn59 New Member

    THanks for posting this. I was told by
    someone very smart in these matters to definitely
    get tested for Lyme Disease since I live in CT.
    I was never aware that you could have it without
    knowledge or the bull's eye rash.
    I hope this is the answer for you.
  3. MemoryLane

    MemoryLane Member

    My newest doctor asked me the other day if I had been to the Eastern half of the States or Colorado. I said no, but I knew why he was asking, though he didn't say why.

    I live in Texas and years ago we had terrible flea and tick problems. Since the fire ants have taken over, they have over run and exterminated everything that lives on the ground, including our Quail, Horned Toads and Prairie Dogs. We seldom see ticks and the fleas are all but gone.

    I was tested for Lyme and HIV last summer, just to get those things out of the way. I never knew there could be a false negative. Mine was done by the local lab that my insurance I had at the time authorized.

    Are you able to tell what the three tests were? Or was the same test run three times?

    Thank you for the information,

  4. jan a.

    jan a. New Member

    after talking to many people who have lyme and every story is different only about 50% of cases have rash...In my case I probably have had this for a long time..20 years or more... then its called chronic lyme...may have been ill at the time thinking it was the flu or something....then it hides and comes back to haunt the infected person later after a trauma or illness...I sure dont know all the answers but I didnt know I was bit whenever it thats why it was never pursued in my case...we just have to always keep lookng for the answers and work with your dr. to get them to answer all your suspisions even if they dont agree...mine was happy to do what I ask...heck he wants to make his patients well too....the symptom that tipped me off that I might have it was that I read it affects the heart, nerves and brain when infected a long time...Ive been plagued with heart you never know...never stop, jan a.
  5. ReallyTired

    ReallyTired New Member

    Glad to hear you are responding...

    When 2-3 months have gone by, let us know how you are doing. Do you remember having the bull's eye rash common in Lyme disease?

    I hate to bust your bubble and I hope you continue to improve but the Lyme tests are completely unreliable and shouldn't even be used.

    Good luck to you....

  6. jan a.

    jan a. New Member

    I had two different antibody tests done and one pcr test of the antibody tests was positive...I know one was western blot test, but dont know the name of the other...not sure which antibody test it was that was positive...will have to ask my dr.
    I live in florida where lyme used to be thought of as non existant but it is here now as well as every other state Im told...I may have gotten it up in N.J. a long time ago...Ill never know...but Ive met people here in florida who got it here so who knows....hope this helps a little..jan a.
  7. Applyn59

    Applyn59 New Member

    I have a cousin who has Lyme disease and
    FMS. She is nowhere as sick as I am though. She
    didn't seem to think Lyme was too bad. I guess she
    had it and treated it and that was that. I think she
    got the FMS after the Lyme. She is a teacher and
    works. I don't see her often, but the last time she
    saw me I cried and cried. I was really bad. She
    felt so bad. She also had back surgery like I did - only
    hers worked.

    I have an aunt (other side of family) who
    has polymyotis or whatever it is.

    Guess it would be good to rule Lyme out. If I had known
    you could have it without being aware, I would have
    checked into it a long time ago. I guess there is only
    so much you can do. There are so many different
    problems associated with FMS that I also research

    Good luck with your treatment, Jan. If you ever find
    out the test names, please let us know.

    To the person who calls them useless tests -
    could you please elaborate on this?

    Did you both see Lyme specialists? DId your regular
    dr. do the tests?

    [This Message was Edited on 06/06/2003]
  8. jan a.

    jan a. New Member

    dear lynn, my dr. is an infectious disease specialist. I know a woman who was sick for 9 years...used to be a runner and did backpacking, very athletic...after she got sick she went to dr. after dr.and after much frustration went to the mayo clinic in rochester, mn. after a week there and many tests she still had no real answers to her illness...her dog got so sick she had to put him down. she then heard about the dr.I go to since he specializes in finding diseases that other drs. miss since he does many more types of tests. she went to him last september, very ill...he tested her for many things incuding came back positive and with much treatment which she is still on,she is now almost completly cured doing all the things she used to do...I have a friend who is a nurse who knew of her since she went to her dr. she works for during the time she was going from dr. to dr. She called her and asked her to call me and tell me her story since I was anxious to speak with another patient with If there is no such test that works , I know people who will argue that point...I am not going to because I sure dont have all the answers , only hope for the first time in a long time...and if for me it dosent turn out so good at least I had hope for awhile and it feels to you..jan a.
  9. Applyn59

    Applyn59 New Member

    Much luck with your treatment and be sure
    to keep us posted.