I Need Help!

Discussion in 'General Health & Wellness' started by jberg11, Apr 30, 2011.

  1. jberg11

    jberg11 New Member

    Hello - I am from New York State and am currently in Australia for an undetermined amount of time and doctors here are clueless about lyme disease....

    I would love any input, suggestions, support, etc to help me figure out what is going on...

    Here is my story:

    In late June of 2010 I removed a tick that had been attached for 1.5-2.5 days....Two weeks later I woke up with the typical bullseye rash, flu like symptoms, extreme muscle and joint pain and a fever. Against everyone else's better judgement I waited several days before taking antibiotics as my symptoms worsened...The worst part of the pain was in my neck - I could not put my chin to my chest and gradually began to have to lean my head against my tense and contorted shoulder. I finally started the drugs and was still in a tremendous amount of pain for a couple weeks. I then got sun poisoning, but eventually was able to get better...I was still in pain but I pushed through it. My muscles loosened but the pain in my neck got much better.

    The day after finishing my prescription I woke up with sever neck pain and stiffness and could not lift my head and/or touch my chest. Again against everyone's better judgement I waited about four days to go to the emergency room. They immediately gave me a spinal tap fearing spinal meningitis and did blood work...No meningitis, they just sent me home with vicodin and muscle relaxers. Unfortunately I had a terrible experience with the after effects of the lumbar puncture and had to lay flat on my back for 2 weeks to avoid a massive migraine. I'm not sure if it was this "stillness" and/or the drugs they gave me that helped to loosen my neck.

    General pain in my neck never went away. My joints all hurt still and I got tired easily but I am one of those people who just deals with the pain and focused on other things like work. Now however, I am on the other side of the world....3 weeks ago (after an emotional phone conversation back home) I woke up with a terribly stiff neck and a lot of pain. My joints all hurt but it was my neck that was the main problem. I hadn't done any exercise or labor out of the ordinary. I went to an osteopath who was amazed at the tightness in my back and said the muscles were trying to compensate for inflammation in my upper spine.

    Vicodin and muscle relaxers were not helping....Nothing helped! So I went to the hospital here and the unhelpful doctor ordered some blood work to test for inflammation. He did this in part because my sister suffers from severe rhuematoid arthritis and there was the thought that perhaps my lyme over the summer had triggered the disease in me. He told me to take anti-inflammatory drugs consistently which I did and it certainly helped. I'm mobile now but still in pain, especially if I miss taking the pills. The blood work came back showing no signs of inflammation.

    My only guess is that the lyme has somehow come back but I really don;t know how it all works. I have no idea what course of treatment I should seek. Are more antibiotics the answer? Did the lyme never leave my body? Am I going to do more damage by simply taking anti-inflammatories nonstop and avoiding the root of the problem? Do my symptoms sound familiar.

    Currently I'm coping with joint pain in my knees, shoulders, hips and wrists - my neck is obviously a big issue. I'm extremely tired all the time. And through the course of the past 3 weeks I have had flu like symptoms and what seems to be a fever where I start sweating profusely. I feel like I'm getting better but I'm not sure. I need help. I've been light headed and extremely depressed (due to a lot of reasons regarding being immobile and personal issues) since this began 3 weeks ago.

    Please help in any way possible....I'm here with no medical support and no money to get random tests done by doctors who are clueless about the disease, if that is what it is at all.

    Thanks in advance for any support....
  2. rockgor

    rockgor Well-Known Member

    Of should I say, "G'day"? Welcome to the board.

    Have you posted on the Lyme board? It's on this site. See a list of boards
    in the upper right hand corner.

    If you want to talk about non-medical topics like kids, pets, music, royal
    weddings, etc., visit the chit chat board.

    Good luck

  3. Nanie46

    Nanie46 Moderator


    The two most likely scenerios that come to mind when reading your story are:

    1. You were most likely undertreated for lyme following IDSA guidelines instead of ILADS guidelines and therefore the lyme persists.

    2. You were likely also infected by the same tick with other common tick-borne coinfections like Bartonella, Babesia, Ehrlichia, etc.

    Please do this:

    Go to lymenet.org......click on flash discussion.....sign up for free.....click on the "Seeking a Doctor" board and post a topic that says "Need a LLMD (Lyme literate MD) in Australia".

    Then go to lymenet.org's "Medical Questions" board and post your story there like you did on this board. The Medical Questions board there is very busy and there are lots of people with experience to help you.

    If you can't find a LLMD there, you may try some alternative treatments. You can use the search feature there to search for topics.

    There may be people there with knowledge of Australian LLMD's or lyme friendly MD's.

    Here are some resources that are vital to read about lyme and common coinfections:



    The "Bible" of lyme treatment:



    Good luck, and see you on lymenet.org where I am Dekrator48.