Who now has a DX of Lyme?

Discussion in 'Fibromyalgia Main Forum' started by happygranny, Nov 29, 2005.

  1. happygranny

    happygranny Member

    I am wondering how many of us were Dx'd with FMS and/or CFS and are now finding out they have Lyme Disease.

    It could be that you have Lyme instead of FMS or CFS, or it could be you now have all three Dx's (How awful!).

    I would like to get an idea of numbers.

  2. Countrymom

    Countrymom New Member

    I was diagnosed with FMS and CFIDS and now I find out that I have Lyme. I don't know if they are all seperate or one and the same.

  3. karatelady52

    karatelady52 New Member

    Count me in.

    I think since lyme mimics so many illnesses, we only have the lyme dx. The viruses become active from the suppressed immune system.

  4. Dalphia

    Dalphia New Member

    Was diagonised 14+ years ago with CFS/Fibro., just recently found out I also have Lyme, plus 4 co-infections.......

    Guess we will have to wait and see when the Lyme is under control if we feel well with no symptons of CFS/Fibro.

  5. happygranny

    happygranny Member

    It will be interesting to see how many of us. I also think this might encourage awareness of the possibility and more people might get themselves checked out.

    At the Canadian Lyme website there are also people Dx'd with MS who are now finding out they actually have Lyme and are starting to improve with the ABX treatment.

    I am herxing a lot since I started my ABX protocol 6 days ago, spen most of my time laying on the couch, and I am delighted with this - it means the bacteria are dieing off!! Yah!!

  6. lisagra

    lisagra New Member

    took 10+ months of multiple doc visits, hospital stays, etc...but was finally dx w/lyme and all of her nasty co-infections. i also have a jaw infection which really mucks things up.
  7. hopeful4

    hopeful4 New Member

    Dx with CFIDS in 2000, FM in March this year, and Lyme in October this year. When I got the Lyme Dx I asked Dr. M, Does this mean I don't have CFIDS/FM? She said I have it all.

    Although I don't know how or when I got the Lyme, at this time I believe it caused the CFIDS/FM. And the symptoms are so overlapping. I think the Lyme bacteria was lurking, waiting for a time when my system was down from sudden severe illness and surgery, then it took advantage big time.

    Take care,

  8. happygranny

    happygranny Member

  9. jarjar

    jarjar New Member

    I think a large part of CFS patients are Lyme patients that just haven't had a state of the art Western blot lyme test. I was diagnosed with CFS back in 88 and just found out a couple of months ago I have lyme.
  10. kch64

    kch64 New Member

  11. kch64

    kch64 New Member

    Did you all get the test through the IGenex Labs for it?

    I've been reading about it on this board. I may ask my doctor for it.

    The herxing? What does it feel like?

  12. Frecker777

    Frecker777 New Member

    Diagnosed with IBS, CFIDS, panic disorder, and mono all in past five years….got lyme diagnosis this October. I don’t believe the two (lyme & CFS) are mutually exclusive.
  13. happygranny

    happygranny Member

    Seems like quite a few of us...

    I did not have the Igenex test. My doctor did a clinical diagnosis, and I started the ABX a week ago. He told me that if I started to herx that would be a guarantee of the Dx and that the only other bacterial infection that could cause a herx with the antibiotics I am taking would be syphilis and I don't have that. I have had blood tests done for Lyme as well as some of the co-infections, but haven't got the results yet. The Lyme test was the Elisa, which I have no faith in.

    The herx started within 24 hours and has continued in waves for the last 6 days. The symptoms of the herx I have are increased pain, fatigue and diahhrea. I normally don't have diahhrea, but sure have the last 4 days. I have read that some people have increased depression and mental instability as well as nausea. I do have a lot of bloating.

    Bottom line is I am convinced I have Lyme and not sure if I want to spend the $$ to get the Igenex test. I will see how things unfold.


  14. redsox10

    redsox10 New Member


    My daughter after 2 years if a CFS is now diagnosed with lyme. In treatment for 1 year and is slowly improvong. My 25 year old son was daignosed with neurolyme last month.

    Happtgranny... consider getting tested for lyme and coinfections. If coinfections are not addressed you will not recover. Are you seeing a llmd?

    Are you taking probiotics?
  15. tansy

    tansy New Member

    it's part of the soup, not the cause of all my symptoms. Many of us have been told we have FM, ME/CFS etc as well.

  16. happygranny

    happygranny Member

    You probably missed where I wrote that I have had blood work done for Lyme and co-infections and not had the results back yet. The Lyme test I had is the Elisa which I do not have faith in. I do look forward to the results none-the-less.

    Yes, I have taken probiotics for over 2 years now, since I was treated for candidiasis, as well as eating yogurt every morning since I started the ABX.

  17. justlikemom

    justlikemom New Member

    I've been treating my chronic lyme for 6-7 months now... some days I see improvement, others I feel as miserable as when I was first diagnosed.

    The doc told me the other day to not plan on going back to work next year either.

    I was diagnosed clinically. My Elisa was negative, and my Western Blot (through Stonybrook) was "indeterminant"... but that is not uncommon for chronic Lyme.
  18. jbennett2

    jbennett2 New Member

    I was diagnosed with FM in July of 2004, with Lyme in Sept. of 2005.

    I am on three antibiotics, plus miralax for constipation.
    I have to stop the antibiotics because I have developed hives - which may either part of a herx, or yeast. I see my LLMD on the 12th.
  19. victoria

    victoria New Member

    I'm sure my son would've been dx'd with CFIDS as he was getting same symptoms as me...

    but instead took him to LLMD and yes, he has active Lyme...

    I'm doing a protocol based on the premise there is some type of stealth infection which appears to be working (Marshall Protocol),

    don't have the $$ to spend on myself for all that testing that my son has had done.

    all the best,
  20. happygranny

    happygranny Member

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