Discussion in 'Lyme Disease Archives' started by vivian53, Mar 14, 2009.

  1. vivian53

    vivian53 Member

    Hi Nanie46. I'm crossing boards here from the FM board to pick your brain. I have no clue as to the infections you mentioned to me there. I was tested for Lyme years ago and this was negative. I will list my symptoms as you suggested and maybe you could point me in the right direction to seek appropriate intervention.

    widespread body pain
    diminished ability to think, especially clearly
    low level generalized anxiety

    I am on SSDI for FM. I have had this and coexisting musculoskeletal problems for 14 years. I am not nearly as sick as many other folks here. At the risk of showing my ignorance I will add that I have had so many tick bites in my life it's not even funny. Deer ticks, cow ticks and seed ticks. I also had HPV way back when they thought they were simply warts.

    When I first got sick I thought I had "caught" it from a woman I worked with that had similar symptoms, as did her husband. He had served in the Gulf War. I was tested for a variation of the Gulf War virus and this was positive. My doctor put me on a high dose of antibiotics for a year but I had no improvement in symptoms. I can't remember the name of the virus but would if I saw it again. Don't laugh but part of the name meant "unknown or unidentified in Latin", I think.

    Thanks for caring enough to spend time helping me. I do appreciate it and will reciprocate if I can.

    [This Message was Edited on 03/14/2009]
    [This Message was Edited on 03/14/2009]
  2. Nanie46

    Nanie46 Moderator

    Hi vivian,

    I am glad you decided to come here to post your questions.

    You sound alot like me. I had a FM diagnosis for 21 years before discovering through my own research and persistence that I had lyme disease (borrelia burgdorferi infection).

    FMS is just a syndrome of symptoms that has "no known cause". You know as well as I do that something caused your illness.

    I just got a diagnosis in Feb 2009, so I've only been treating for almost 5 weeks.

    Alot of people think that lyme has been ruled out because they had a negative test. This is untrue for several reasons...

    Testing is poor. Most Dr's just order a lyme titer/screen and if that is negative, they stop. The lyme titer misses at least 50% of borrelia infections. Lyme experts say it should not even be used.

    Even if a Dr does do a western blot for lyme, it would most likely be done at a lab that does not test for all bands and the lab only used a few species of borrelia when developing their testing methods.

    Then on top of that, they follow the CDC reporting criteria which makes it even more difficult to get a "positive". The CDC reporting criteria are very rigid and not meant for diagnosis at all.

    There are 300 species of borrelia worldwide...100 in the U.S. If only a few species are used when developing testing methods, the chances of detecting antibodies to the one you have are slim.

    Most labs only test for 10 IgG bands and only 3 IgM bands. Igenex lab in CA tests for ALL bands....thats 14 IgG bands and 14 IgG bands. It is absolutely necessary to test for all bands because some of the bands that most labs leave out are very SPECIES SPECIFIC.

    That means that only someone who was exposed to the borrelia bacteria would make antibodies on those species specific bands.

    Even a negative overall interpretation on an Igenex test does not mean you don’t have lyme. It is not ruled out with a negative test. It is most important to look at the individual band results and compare them to what Lyme experts know are species specific bands…….page 7 of :

    The entire above paper by a Lyme expert is fantastic. Also has a symptom checklist.

    That’s just a brief explanation of some testing available. You should have a western blot from Igenex lab in CA…test #188 and #189……

    You can call and get a free test kit with Fedex mailer sent to you. You need a Dr order for the test. A test order form comes with the kit or you can print one off their site. Total cost $200 must be prepaid and you can send the receipt into your insurance co to see if they’ll pay.

    I’m not telling you what to do, but your symptoms are all on the lyme symptom checklist and you already know that you have been bitten by more than one tick. That in itself is a strong history. Combine that with your symptoms and it screams lyme.

    A diagnosis of lyme is a clinical one…means that it is based on your history, and symptoms and can be supported by labwork.

    When I first got sick I also thought ( for 21 years) that it was a virus…..flu-like illness with real sore throat etc. Now I know it was bacterial.

    I am going to direct you to some resources to read. Come back here as many times as you want to ask questions, make new posts, etc. There are other helpful and knowledgeable people here too.

    99% of Dr’s would never recognize lyme unless a bullseye rash is staring them in the face. Many people never see a bullseye rash.

    When Dr’s give people diagnoses like FM , CFS, MS, etc, they say the cause is “unknown”…and then they never look for it!!!!

    It is only common sense that your illness was caused by something, and it is likely infectious.

    Lyme is actually very underdiagnosed because there are sooooooo many people who have been misdiagnosed for years.

    Some got FM, CFS, MS, Parkinson’s etc diagnosis. Other have just been diagnosed with a lot of individual problems……fatigue, migraines, chronic sinus infections, bell’s palsy, numbness and tingling, muscle or joint pain, insomnia….the list can go on and on.

    Ticks also carry many other infections such as babesia, bartonella, ehrlichia, anaplasma, Rocky mt spotted fever, Q fever, etc.

    The proper antibiotics have to be used for the right infections. Different infections are sensitive to certain antibiotics. Very often combination antibiotics are used.

    I am on doxycycline, zithromax and plaquenil.

    The whole subject of tick borne disease is complicated.

    I would recommend making an appt with a Lyme literate MD(LLMD) who knows that long term treatment is required, especially when the illness is not detected right away.

    Most Dr's will only give you up to 4 wks of antibiotics and declare you cured.

    LLMD's usually require payment out of pocket because insurance co’s deny the existence of chronic lyme so they don’t have to pay for our treatment!!!!!!!!!!!!!!!!

    To find a LLMD in your state….go to… on flash discussion… on “Seeking a Doctor”…..register your info for free……then post a message on the Seeking a Doctor board such as “Need a LLMD in Maryland”…..or whatever state you live in. You will receive a private message. Names and cities of LLMD’s are private and not posted online. also has a very active medical questions board that I am on also.

    Here are other very good resources you should check out…..

    The above booklet is very helpful, basic info to start with and has a very comprehensive symptom list. Different people have different sets of symptoms. Lyme has many presentations depending on which coinfections you have, the path that the bacteria took in your body, etc.

    The most common symptoms seen widely are pain syndromes, fatigue and insomnia.

    The above site contains the guidelines by Lyme experts who believe that chronic lyme exists.

    A lot of other good info is on

    The above is an astounding and eye opening essay by a MD. Everyone should read it.

    There is a lot of other good info available. Start there. Come back and ask questions. Go to

    You may have stumbled upon your chance to get a proper diagnosis and a chance to recover. Good luck!

    [This Message was Edited on 03/14/2009]
    [This Message was Edited on 03/14/2009]
    [This Message was Edited on 03/15/2009]

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