Question for the lyme people?

Discussion in 'Fibromyalgia Main Forum' started by damz68, Feb 4, 2006.

  1. damz68

    damz68 New Member

    I have been clinically dx'ed with lyme without a positive. I did test positive to babesia. Do any of you lyme patiants feel this way.
    I feel this way 24/7 for almost three years, it all started after a couple of flus with real bad chills.

    Fatigue
    disconnected fog
    Stuffy ears, eyes and nose
    all sorts of visual problems
    dizzyness/lightheaded
    burning in arms shoulders and back
    leg pain, muscles and joints
    confusion
    buzzing

    Other symptoms that come and go are
    Headaches
    neckaches
    flu-like feeling
    flushing
    coldness
    sweats
    frequant urination
    GI problems
    acid reflux
    left side flank pain
    sleep issues
    anxiety
    depression
    tinnitus and ear aches

    I have been on abx for 9 months, how long should I continue without positive results.

    [This Message was Edited on 02/05/2006]
  2. hopeful4

    hopeful4 New Member

    I have some, but not all of the symptoms you describe. I was recently DX w/Lyme, too.

    From what I've read, lyme cannot be cured by antibiotics alone. The spirochete takes different forms in the body as it tries to hide.

    What about co-infections? Have you been tested and/or treated for them?

    Are you seeing a LLMD (lyme literate medical doctor)? Many doctors are not well-versed in treating lyme.

    If you haven't already I suggest that you visit lymenet dot org. It's full of very useful info.

    Also, take a look at Dr. Burrascano's treatment guidelines there. It could be very helpful to you.

    Best wishes,
    Hopeful4
  3. victoria

    victoria New Member

    my son has had/is having... dx'd last May with Lyme, tests came up definitely active/chronic lyme, re-tested in Dec., still active... he has been on several different regimes of abx because different variations of lyme respond to different abx, there are over 100 variations in USA alone.

    He also takes flagyl one week out of the month, as it dissolves the cyst form.

    They recently added plaquenil to see if it will help decrease inflammation/get abx into brain better.

    The 4th week of every cycle he usually does not take anything to give his immune system/body a rest; I've been told the lyme spirochete takes about 28 days to replicate.

    So he has been on oral abx since beginning of May '05 - he did feel better after first month of abx - but has had diminished results since, and lately cannot tell any difference -

    but he has been on abx about 9 months now, same as you; the clinic told us if he doesn't show some obvious improvement over next 2 months, he will have to try IV abx :((

    And from what I've read of others' experiences, it varies all over the board - some feel better immediately, some after 6-10 months, and for others it takes longer.

    Who are you seeing? the LLMD in Huntersville NC?

    hope this helps,
    Victoria
    [This Message was Edited on 02/04/2006]
  4. damz68

    damz68 New Member

    thank for the responses. I was really wanting to know if anyone here feels this way and how long I should be on abx? I do have a co-infection, babesia. I do see a llmd, Dr.J. I am doing everything I am suppose to do for lyme and I am not getting better. I have taken many differant combos of abx.
  5. dontlikeliver

    dontlikeliver New Member

    All of your list, and more.

    When you start antibiotics, you may feel worse for several months before you feel better from the toxins produced when the bacteria dies off. If you quit the abx too soon, you may feel better (thinking the abx didn't work), when in fact it's a pretty good sign they are working. It may take time to get through.

    It was six months before I felt any better and a year before a more marked positive change.

    In addition, if you are on abx and feel worse, or improve then stop improving, it could indicate you need to switch antibiotics also.

    DLL
  6. victoria

    victoria New Member

    thanks for your info and encouragement about feeling better after going on IV abx, it does make me feel better about the possibility of my son having to do it!

    I was really hoping just the oral abx would work since the first month he had such a big herx, and during his week' off' had felt markedly better... but not since, even with the same abx/flagyl and now plaquenil...

    I guess it just has to be 'ramped up' so to speak in terms of strength of treatment for some... they did tell us he'd had it at least for several years from the changes on the bands on the test...

    and of course the longer one has had it, the longer it takes to get to feel better.

    Thanks,
    Victoria