Stiff Neck and Severe chronic headache

Discussion in 'Lyme Disease Archives' started by CFS23975Bob, Dec 28, 2010.

  1. CFS23975Bob

    CFS23975Bob New Member


    My symptoms started as a stiff neck, severe headache. Then flu-like symptoms, chills, swollen lymph nodes, sore throat, enlarged spleen and enlarged liver, severe fatigue. I was diagnosed with mono but the symptoms never went away. I have been diagnosed with CFS and am on Valcyte and so far I have had no improvement. I am aware that Lyme Disease may be a possibility, so I just wondered if other people with Lyme have had these symptoms, and gotten well on lyme treatment.

  2. Nanie46

    Nanie46 Moderator


    Yes, other people with lyme have had those symptoms.

    You need evaluated by a Lyme literate MD. To find one, go to on flash discussion....sign up for on "Seeking a Doctor" Board.....create a post asking for a LLMD in your state.

    Then go to the "Medical Questions" Board to read posts and post your questions.

    Treating as soon as possible is key. The longer you have lyme, the harder it can be to treat.

    Your symptoms are no longer acute. They are disseminated and chronic.

    An infectious disease Dr will likely not be able to properly diagnose and treat you because they follow IDSA guidelines. LLMD's follow ILADS guidelines for long term treatment.

    Please read this info.....

    CFS is just a name for a set of symptoms that Dr's can't find the cause of.

    There obviously is aa cause of your illness, so you have to find it yourself.

    Get a Western blot IgG and IgM for Igenex lab in CA. Test #188 and #189.

    You need a Dr to order it.

    Even if the official test result says negative, you can still have lyme. Lyme testing is VERY unreliable. Igenex is the best and they test for all bands when regular labs do not. They also include 2 strains of lyme in their testing methods and regular labs only include one strain.

    Get a copy of your test and compare your band results to this information......

    "Western Blot" information on page 7 of this paper...

    and to this western blot information by Dr C....

    You can get a clue by seeing a lyme specific band on your test results.

    Combine that with your history and symptoms and it can point to lyme.

    It is important to remember that MANY, MANY lyme patients have only had "CDC negative" results on their western blots due to the strict CDC requirements for reporting.

    A lyme diagnosis should NEVER, NEVER depend on having a positive test. It is a clinical diagnosis based on history, symptoms, and exam.

    Stiff neck is a hallmark of lyme. I had that same flu-like illness 23 years ago. I figured out lyme almost 2 years ago.

    I am getting long term treatment by a LLMD and I'm getting better.


    Good luck!

  3. CFS23975Bob

    CFS23975Bob New Member


    you seem to have some good information here and yes I understand what a diagnosis of CFS is. I have been sick for 7 years and to many, many doctors, so I am familiar with a lot of what is going on. I was wondereing if there is a way we can communicate via email?
  4. Nanie46

    Nanie46 Moderator


    I can't give out my email address here, but a good way to communicate with me is to sign up on

    I am Dekrator48 on They have a private message system where you can send a private message to a member via the board. It is really great. Lots of very helpful and intelligent people there too who were first diagnosed with CFS or FM or Lupus or MS.....and it was really lyme.

  5. munch1958

    munch1958 Member

    Hi CFSBob: I had a constant daily headache for well over 30 years. My neck was like Rice Krispies: snap, crackle and pop. All day everyday.

    After starting Lyme treatment, I no longer have to carry around a little bottle of pills with some of everything in it. Everyone who knows me, knew I always had some of this and some of that. I am no longer the walking pharmacist and have not carried around that little bottle filled with acetaminophen, NSAIDS, Immodium, Benedryl, Imitrex, the purple pill, antacids, etc.

    There is a running list of everything that I've done and tried in my profile since I started this journey of getting to the bottom of CFS/FM in 2006 when I went to the Detroit FFC. I guesstimate that I was bit by a tick circa 1969 in the Ozarks, then again in 1974, and again in 2001. All my lyme tests are negative but I do have many species specific positive & IND bands.

    I am on Facebook. There are tons of people with LD/CFS/FM there.

[ advertisement ]