Ok guys it's Lyme

Discussion in 'Fibromyalgia Main Forum' started by heathnicole, May 21, 2006.

  1. heathnicole

    heathnicole New Member

    For those of you who have not been tested by a reliable company get it done!
    I have lyme. Have been negative
    Till a went to a company called Igenex which is suppose to be one of the best . .. and came back double positive on many strands.
    My question is how to get good lyme help.
    I have been trying to get onto a message board and can't get on.
    I have been trying to get on lyme net- and have tried over 20 screen names and it keeps telling me that the user id is already taken- and I have used some weird names .. Can anyone please help me figure out how to get on this board??

    Just to let those know to get tested if you haven't : ) Mabye I am finally getting somewhere.
    God bless and thanks in advance for anyhelp
    I need to find a lyme doc asap!! :)
  2. bct

    bct Well-Known Member

    on this site (pro-health's)?
  3. ANNXYZ

    ANNXYZ New Member

    I also have lyme and think MANY OTHERS HERE do too , but have not had an Igenex test ( which is reliable and reputable ) .

    Jarjar posts on lymenet also, and he is VERY VERY helpful . He will respond if you post here for him.
  4. jarjar

    jarjar New Member

    So glad you have a diagnosis! Now you know what needs to be targeted to regain your health. Perhaps the boards new log in section isn't working properly. Try it another day. I have been told not to be encouraging people to go to other sites so I'm limited on what I can do to help you.

    Jar
  5. Countrymom

    Countrymom New Member

    You don't have to be registered to read the posts or the info, just if you want to post a question or reply.

    I have had that site act funny on the weekend before so just try again and again. It is worth the hassle, lots &lots of lyme help,

    Sorry you have it but glad you know what to fight!!

    Dani
  6. heathnicole

    heathnicole New Member

    I can read posts but because the docs treating lyme aren't safe- ( usually lawsuits) they don't post names of good docs.
    So I am lost

    IT keeps telling me the user name is already taken and I have tried some stuff that i know people don't have.
    the webmaster was not much help/
    Does anyone else have ideas?
    PLEASE?
    Thanks so much
  7. heathnicole

    heathnicole New Member

    There is hardly anyone whos posts on that website . . .
  8. jarjar

    jarjar New Member

    The site you want to get on that you mentioned earlier is notorious to have problems to get on during the weekends. Especially on Sundays! Often I can't even read post on Sunday. I think they work and update the site on the weekends.....chill and wait a day or two.

    jar
  9. mrpain

    mrpain New Member

    How did you get a igenex test or was that a web site?
  10. victoria

    victoria New Member

    There is a LLMD doctor in Mobile Alabama and one in Charlotte NC (where I take my son)... if you go to the general board at lymenet you'll see the one in NC being talked about... I highly recommend him.

    While I live 70 miles from Atlanta, I was told there were really no good doctors here, this was before the FFC/Fibro & Fatigue Center in Atlanta opened... I know there are people here being treated for lyme at the FFC --

    but have to say that the FFC center's protocol is quite different than the NC's doctor's protocol; his made sense to me when it was explained...

    hope this helps,
    Victoria
  11. heathnicole

    heathnicole New Member

    Thanks I will keep looking for a doc
    It is just really frustrating because I have been trying for over two weeks and there is something going on.
    I think something on my computer is blocking it but I don't know how to change it.

    I will try to read the posts but a lot of poeple don't mention LLMDs online because of legal problems with the DOCS.

    I paid this DOC in tampa $475 an hour to run some tests and he came back with Igenex testing double postive - many strands for lyme. But I can't afford him and to be honest I am not that impressed. So I will keep up the search
  12. jarjar

    jarjar New Member

    I will see if I can find someone if Fl. for you. Will keep you posted if I get a response.

    jar
  13. hopeful4

    hopeful4 New Member

    Here's a suggestion for registering at lymenet:

    Go to Flash Discussion.

    Scroll down the page to the bottom and click on Contact Us.

    Then click on webmaster.

    You can write to the webmaster regarding you problem with registering, and perhaps that will get you all set up.

    To find a doctor:
    Once you are registered you can post a question on Seeking a Doctor.

    Other suggestions have been made, and I second them:

    Find a support group in your state, or some of the FFC's are doing well with treating Lyme.

    Let us know if you have success getting registered and logged in at lymenet.

    Best wishes,
    Hopeful4
  14. winsomme

    winsomme New Member

    www.lymenet.org

    you will have to register (for free) on their "flash discussion" section.

    they have two sections that will be helpful to you.

    Medical Questionst - this will answer just about any question have about treatment.

    Seeking a Doctor - this will help you find a DR in your area.

    let me know if you have any questions.

    thanks
    bill
  15. jarjar

    jarjar New Member

    I had a person from Flordia respond about finding a good LLMD in FL. Her advise was to go out of state. She mentioned several Dr's in different parts of the state but wouldn't advise to go to any of them.

    Best of Luck
    jar
  16. heathnicole

    heathnicole New Member

    I guess there was something blocking it on my computer anyhow I never figured out how to register . . but I did get my mom from her computer to do it for me!
    Thanks for all the help

    JAR--
    Do you know who this person recommened out of state? I have heard that there aren't really any good ones here in FL. I have actually had a couple rip me off and one CFS/fm doc overdosed me and I am still going through withdrawls .. . .and he was on the CFS " good doc list"

    So . . .again I am willing to travel. . my mom will have to take me as I am very sick. But if he is a good doc I will go where ever is needed
    THANKS SO VERY MUCH FOR YOU HELP!
    GOD BLESS
    HEATHER
  17. jarjar

    jarjar New Member

    I got a good review of a doc for you in Jacksonville. Go to the lyme board on this site and pull up your old thread and you will find out the info. Let me know when you get info.

    Jar
  18. ANNXYZ

    ANNXYZ New Member

    getting diagnosed with lyme after an Igenex test ( like me!) I paid about $250 for the test and it was well worth it .
  19. mrdad

    mrdad New Member


    In relation to Lyme Disease tests, there is an interesting article on this website by Kent Holtorf, M.D. if you bring up the Library Section on this site. He write about "EXpanded Western Blot " test with an improved sensitivity of detection of over 90% with low "false-positive" of less than 03%. It might be worth reading when considering taking a Lyme test in the future.
    Hope you are all having a good Holiday and lets remember our Vets!!
    MRDAD