Just Found Out I Have Lyme Disease

Discussion in 'Fibromyalgia Main Forum' started by pw7575, Oct 10, 2008.

  1. pw7575

    pw7575 New Member

    Hi Everyone,

    I just got back from the doctor and it turns out I have Lyme Disease. I have been sick for 7 years with CFS or at least I thought it was CFS. I guess it was Lyme this whole time. I wasn't expecting this. I am in total shock.

    I had a doctors appointment on Monday for some abdominal pain I have been having. I told him that I have CFS which he didn't seem to know too much about. He asked me about it and I told him my symptoms and how it started out like a horrible case of the flu that never got better. He then immediately asked me if maybe I have Lyme Disease. I said I didn't know so he said he wanted to run a Lyme test.

    I never thought the Lyme test would come back positive because I was tested (through Quest) when I first got sick and it came back negative. Now I have read that it sometimes doesn't show up right away in the blood so maybe I got tested too soon back then for it to show up. So he ran another Quest Diagnostics Lyme test on Monday and I got the results today and it was positive for Lyme Disease.

    I am in total shock. I am not sure if I have Lyme and CFS or if it has just been Lyme the whole time. I think it probably has been Lyme all along. I got sick when I was on vacation in the mountains so it is very possible that I got bitten by a tick while I was hiking in the woods.

    Anyhow...just wanted to share my news with everyone.

    Take Care,
  2. Catseye

    Catseye Member

    Hi Pam, what a bummer. When I tested positive for it, I started looking back to where I may have gotten it and it does explain some long term symptoms I had that predated my cfs. Since lyme is such a pain in the arse, it's a mixture of bummer to find out you have it and relief in a way that now you have something to focus on and something to tell your moronic docs that thought you were a hypochondriac.

    Wow, just think, now you can join in the fun on the lyme board!

    my condolences,

  3. pw7575

    pw7575 New Member

    Hi Karen and Grammy!

    Thanks for the sympathies. I know having lyme isn't a good thing but I am actually a bit relieved and glad to finally have a diagnosis of some sort other than CFS. I am hoping that I actually just had Lyme this entire time and that treating it will work for me. I know that it isn't that simple and is very hard to get rid of but like you both said...at least now I have something to target and focus on. AND now the doctors won't look at me like I am some crazy hypochondriac :)

    Grammy...my doctor isn't looking into anything else. The doctor I saw today is actually not someone I have seen before. I think she was just as surprised as me to see a positive lyme test. So I will need to find a good doctor. I don't have one now. I have been jumping from doctor to doctor since no one seems to know anything about CFS.

    Thanks for welcoming me to the lyme brigade! I have already started posting on the lyme board.

    I am not sure what to think of all this and what to do about treatment. I guess I have lots to investigate!

  4. pw7575

    pw7575 New Member

    Thank you so much for all of your advice. I did look on lymenet.org and another lyme site and found a few LLMD's in my area. Looks like none of them take insurance but I will have to check into it more. I definitely need someone who knows about lyme to help me with all of this. You mentioned all of those virals to get checked too and I had no clue about that. My doctor is good for ordering the lyme test but I don't think he knows how to treat it so I need to find someone that can help.

    I guess I also need to get tested for coinfections of lyme. I think I am going to try to go back in on Monday and see if they will order a test for coinfections. I found some testing info on the Igenex website so hopefully if I print it out they will run the tests for me. They did my lyme test through Quest but I would rather have Igenex do the other testing since they specialize in it and are better at detecting it. Plus I don't even know if Quest does coinfection testing anyways.

    I did check out some clips of "Under Our Skin" and it is very interesting. I would love to see the whole film!

    This has definitely been an emotional day. What a roller coaster! Hopefully I will be able to get better.

    Grammy...I am sorry that you had such a hard time with the SSDI approval at first. I am sure that was a very emotional experience as well. I am glad that you have adjusted to it though! Boy we go through a lot with these DD's.

    Thank you so much for your help!

    Take Care,
    Pam :)
    [This Message was Edited on 10/10/2008]
  5. pw7575

    pw7575 New Member

    Jam I can't thank you enough for how helpful you have been. I will be sure to check out all the links you provided.

    I also have done some investigating into mold. I have done some reading about it and have followed Lisa's (slaydragons) mold threads at times. I used to live in a musty old basement for 7 years so I think I could have some mold exposure too.

    Thank you again for all of your help. It has been a crazy and emotional day for me so I really appreciate the help people have given me here and on the lyme board. I have so much to learn!