Treated for lyme yet developed further problems?

Discussion in 'Lyme Disease Archives' started by ScottInCalifornia82, Jan 23, 2008.

  1. ScottInCalifornia82

    ScottInCalifornia82 New Member

    I would like to connect with other people who were diagnosed and treated for acute lyme disease with several weeks of antibiotics yet went on to develop further health problems.

    Here's my story:
    About fifteen years ago, at the age of 9, I contracted Lyme disease. My initial symptoms included fever, joint pain and headaches. This was initially shrugged off as the flu by my GP. I later developed bells palsy on the left side of my face and this convinced my GP to perform a Lyme titer test which came back positive. I was given 6 weeks of antibiotics and all my symptoms apparently initially subsided.

    About 2-3 years down the road was when the sleep disturbances and cognitive dysfunction began. Around early high school I developed a serious tremor in my hands as well as severe IBS which both continue until today. This was also around the time when I started to notice the fatigue.

    About three years ago I started becoming extremely lightheaded, especially during physical exertion. Other than the fatigue this is probably my most serious symptom today (I've fainted/collapsed a few times). I was diagnosed with CFS and I am currently being treated for that.

    I should note that I've never experienced any serious pain since my initial bout with Lyme disease. I also had a negative western blot which leads to believe that I am no longer infected with Lyme today.

    It may seem like a bit of a stretch to connect my current situation today with lyme disease 15 years ago, but based on the research and stories I've heard, I have a hunch that the lyme did something to me. I believe this is a much more complex disease than we know.

    Does this sound familiar to anyone? I would like to hear from people that were given antibiotics for acute lyme but went on to develop further symptoms.

    Scott
    [This Message was Edited on 01/24/2008]
  2. mollystwin

    mollystwin New Member

    What lyme test did you have? There are many false negative western blots. If you didn't have an igenex test, I would suggest you get one. And I would also suggest finding an LLMD and tell him your story.

    There are many like you who were treated for lyme but later developed chronic symptoms. It is no stretch to connect your lyme with your "CFS" symptoms. You don't have to have all lyme symptoms to have lyme. I didn't have pain as a symptom for many years. Some have debilitating fatigue as their main symptom.

    Please seek a dr knowledgeable about lyme disease. You owe that to yourself.

    take care.
  3. victoria

    victoria New Member

    I know at least 3 different people currently dx'd with CF and/or FM who know for a fact they had lyme in early 1990s... within 2-3 years they were going downhill, slowly but steadily. None of their doctors will revisit the idea of lyme unfortunately, even before all the controversy.

  4. ScottInCalifornia82

    ScottInCalifornia82 New Member


    It's been a few months and I lost track of this post but I want to thank you for your insight. So Victoria you know three people who seem to have the same exact story as me, that’s amazing.

    twinofdar- I believe my parents say it was only a few months between my initial symptoms and definitve diagnosis (I was diagnosed by the Lyme titer). But the disease definitely spread to my nervous system because I did have bell’s palsy and plenty of joint pain.

    I think I’ve been convinced to finally going to seek the advice of an LLMD.
    Even though at the moment I’m a little fed up with doctors, I think this needs to be done.
  5. victoria

    victoria New Member

    yes ... I didn't find this out til after my son was dx'd with all 5 bands and announced it at my local support group meeting.

    Only 1 tried to follow up but had difficulty doing oral abx, for several reasons... don't think she's doing anything currently, partially because her DH, a scientist (malaria specialist) doesn't apparently think she really has it for some reason. She has found that she is reactive to mold too now, and many more lymies are finding that is an important component to work on......

    There are good doctors in California at least, and there are more than a few here from there.......... good luck with treatment and keep us posted as to what happens?!

    all the best,
    Victoria