How an we get people to think of

Discussion in 'Lyme Disease Archives' started by ajp, May 17, 2006.

  1. ajp

    ajp New Member

    Hi All,

    I have been thinking of writing this post since I was finally diagnosed with Lyme disease last week.

    I am not trying to preach to people, but I read other posts on the fibro board and I want to tell everyone to think of it maybe being Lyme disease.

    I have been sick for years and I really wish that I or my doctor had considered Lyme. I now have arthritis, poor vision, migraines and severe cognitive problems. I have a long hard road ahead of me. I start today on one antibiotic and will start another in six weeks.

    My Lyme doctor and a lot of others (I think) believe that Fibro and CFS are a symptom of Lyme disease.

    If I could help one person to maybe get treatment early instead of getting sicker and sicker like me, I would feel very happy. Lyme disease is approaching epidemic status.

    Hope I didn't upset anyone, just had to write this.

    Love,
    Mindy
    [This Message was Edited on 05/18/2006]
  2. jarjar

    jarjar New Member

    Mindy,
    I have encouraged so many people on this board to get lyme test that I'm almost to the point of being tired of it.

    I think at least 75% of the people on this board have lyme and have never had a state of the art test or had their results looked over by a LLMD.

    Whenever you get the chance you should post topics to educate people. Such as most don't remember even being bit by a tick and they people can get it by mosquitoes.

    Just because you have EBV doesn't mean you don't have lyme. FM and CFS are the 2 most misdiagnosed cases of Lyme.

    Most top LLMD's say that most FM and CFS don't exist. They are just a lyme case that hssn't been diagnosed.

    It truly is an epidemic worldwide.

    jar


  3. patches25

    patches25 New Member

    Very often people would like to get tested but they are afraid to ask their doctor---if they have one. I think most doctors really don't want to test for it. With doctors getting carried away in handcuffs for treating Lyme, they are very skittish.

    I too believe a great many of us have this, but where do you even get appropriate treatment. Many of us cannot even get good treatment for CFS, and Lyme is even more untreated. This is a national (maybe worldly) tragedy. E.
  4. victoria

    victoria New Member

    The problem is for many that if they do bring it up, if one doesn't live in an accepted lyme-endemic area or visited there, it is usually ignored because "it isn't here."

    The interesting thing is that Prickles on the other board mentioned that some handout on FM in the UK now mentions one should be tested for Lyme, and so now her doctor is going to do one. At least that is better than nothing.

    The other difficulty is that even tho it seems doctors 'know' about the stealth pathogens and the different forms they can take, they don't seem to put 2+2 together and treat the clinical picture, even on a trial basis... ie research is not being applied to treatment.

    And add to that the political aspect of medicine, that it is not a 'standard protocol' to treat for chronic lyme... and that insurance companies may not pay...

    well, it does kind of tie everyone's hands. I think the doctors need to be better educated and left alone to treat as necessary... but it is also such a litigious society these days, it's daring of them to even try anyway.

    in short, IMO, it is a mess no matter what.

    But I do think that if we persevere educating friends, relatives, etc., things will ultimately change. Look at how long it took many doctors and the public to accept that there really were bacteria, and that handwashing made a difference...

    Victoria

  5. redsox10

    redsox10 New Member

    Hello to all,

    At least we have this board and it is now talked about. When I first became a member Lyme was not discussed. This board is a start. I know I would of wandered over to it in the days when Lyme was not apart of out life.

    It does break my heart to read the CFS/fibro posts. Top see so many so ill and to know they could be helped. I feel so sad for all but the number of children diagnosed with CFS and to read the heartbreak in the post by parents really breaks my heart.

    The good thing is Lyme awareness is growing just not fast enough.