I Need Help!

Discussion in 'Lyme Disease Archives' 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. Nanie46

    Nanie46 Moderator

    Hi and welcome,

    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:


    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    The "Bible" of lyme treatment:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.lymedisease.org/lyme101/coinfections/coinfection.html


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



  3. TiredAndCrabby

    TiredAndCrabby New Member

    I believe you were undertreated for Lyme. Specialists seem to believe that treatment should be 3 months, whereas so many doctors only do 3 weeks! If it isn't caught soon enough, treatments of antibiotics will have to be repeated every so often for the rest of that person's life,(like me) so even if it's not the Lyme causing you problems right now, if you didn't get proper treatment in the beginning you should demand it now before it's too late!
    Two doctor's websites I know to be very helpful are Dr. Ernie Murakami and Dr. Bernard Raxlen's.
    Perhaps you could print out info to show to a doctor where you are... It couldn't hurt to ask if they'd be willing to prescribe antibiotics. You'd know in a short matter of time whether or not it's the Lyme acting up!
    You certainly have my sympathy. I had experienced much of what you're going through for over 23 years until a recent diagnosis of Lyme. I am now almost finished my 1st three months of IV antibiotics, and what a difference it has made! I can turn my head, and bend my neck, and most importantly I've been getting restful sleep... it's amazing!
    One piece of advice I'd like to offer is that you try to pay attention to your symptoms to see if they seem to worsen on a 28 day cycle... very typical of Lyme. With so many other stresses and events in a person's life it's hard to figure out what is causing flare-ups, but checking the time cycle, and trying antibiotics are the 2 most helpful ways of determining Lyme - if you can find a doctor willing to take the chance.
    I wish you luck and hope you feel better soon.
  4. marieclaire

    marieclaire New Member

    Preferably you need a doctor who understands Lyme or intracellular bacteria. South australia has a good one.
    I would also suggest you view website www.marshallprotocol.com for treatment.
    Lyme never leaves your body, it will continue to grow and invade until you cannot function normally any longer. Get this thing early before it goes systematic. One man in sydney got bitten by a tick and travelled on holiday to Germany with flu like symptoms go to www.karlmcmanusfoundation.com.au
    Karl mcmanus is now dead at 43 years old and after 4 years since being bitten because the doctor's don't believe their is Lyme in Australia. Don't fall for it, I have it too.
    All the best and if you need any help please email. p.s. Samantha Stosur (pro tennis player) had Lyme and was treated within 3 months and is still playing tennis.
    I wish you the very best and sorry that this has happened to you.[This Message was Edited on 10/07/2011]