My fibromyalgia turned out to be Lyme disease

Discussion in 'Fibromyalgia Main Forum' started by Robin1237, Sep 28, 2012.

  1. Robin1237

    Robin1237 New Member

    I had a known tick bite in my foot in 1981. A health clinic removed it and I forgot about it. 10 weeks later, my neck and shoulders became sore. 18 months later, I had full-blown pain everywhere, called fibrocitis at the time, with the term changed to fibromyalgia in 1990. I met in large and small fibro groups and no one knew what caused it. In 2005, I was exposed to lots of chemicals from a nearby fire and I became chemical sensitive. I went online to ask why. A nurse online 3000 miles away finally broke the mystery, asking what my symptoms were, then had I ever been bitten by a tick. Answer: yes. You have Lyme disease, she said. I typed back: "What's Lyme?" I then tested positive through the IGeneX lab in Palo Alto ( - not everyone does test positive who has it, so it's treated clinically by history and symptoms too), went on oral clindamycin 150mg every 6 hours like I had recently done for a finger infection, and in a week's time, my fibro pain of 25 years went to ZERO! Clindamycin worked for me for 5 years and then stopped working. Now I take teasel root tincture and turmeric capsules to keep joint and tissue pain down. We're all different when it comes to what will work for us since there are 100 strains of the Lyme bacteria in the US and 300 worldwide. It's a continuously inflammational bacterial infection transmitted most easily by tiny ticks found in vegetation, on wood and on animals. I saw the tick that bit me, but many people don't see the ticks, as they are very tiny and can drop off after biting. A certain percentage are infected in every area. The spiral-shaped bacteria, called spirochetes, are also found in 23 insects, and also in human tissues and fluids - transmitted congenitally, through breastfeeding, blood transfusions, organ transplants, and some - not all - partners get it. People usually develop enough symptoms and there's a final straw that breaks the camel's back, so to speak - in my case, my liver was already overwhelmed from all the neurotoxins and inflammation of the illness I didn't know I had, and couldn't handle any more chemicals, ergo I couldn't breathe chemical smells or touch chemicals anymore! For more info - you can watch for free a Lyme documentary at - a lot of people say they were diagnosed with fibro first. See also, and - you can get doctor referrals from the latter one - click on Flash Discussion/Seeking A Doctor. We have to see Lyme-treating doctors, as most doctors do not know what's going on, and insurance companies don't want to pay for all the care. My argument - get it right at the beginning, when it is treatable and it won't become expensive! - Robin

    [This Message was Edited on 09/28/2012]
  2. joanierav

    joanierav Member

    beautiful written letter!!!!!

    so happy for you. but sorry you had to wait so long.

    hugs and blessings, joanierav
  3. Robin1237

    Robin1237 New Member

    Thank you, Joanie! Yay - I just saw there's been 61 views, after I just posted this last nite. I came to the site yesterday because I saw someone saying that the prohealth board was mourning the loss of Rich Van Konenynberg, and then I stayed on to testify about my experience.

    Me too - I'm so sorry we all have to wait as long as we do - I even went back to a rheumatologist I had seen early on, and he told me I didn't have Lyme disease, even though by then I had a positive Lyme test, my fibro pain was at zero from taking clindamycin antibiotics, and I had herxed, meaning I had a big reaction to the antibiotics as it was successfully treating the bacteria, and I had to back down in dosage. The doctors are being instructed by insurance companies to not tell us we have Lyme disease, and some of us have co-infections too, like babesia, bartonella and ehrlichia - I always suggest now for anyone who's symptomatic to google the symptoms for Lyme and the co-infections I mentioned, and see for yourself if you think you match any of them. That's what I did - I saw I matched Lyme symptoms and not the other three, and that's exactly how I tested too. Then if you think you match, you can go to, click on Flash Discussion/Seeking A Doctor to get a referral to a Lyme-treating doctor. It's very important to go to one who's studied the complexity of these illnesses and their many treatments. This is not a simple illness to have - there's much strain variation and genetic variations in us, such that we all all different symptoms and we all respond differently to treatments. I can say one thing - after knowing for 6 years now, this is not a boring field! Every time I go to a support group, someone walks in with a totally new constellation of symptoms! And yes, there are support groups everywhere now - again, you can go to, and click on Support Groups at the left, if you feel like checking in with others in your area. Thx - Robin
  4. Forebearance

    Forebearance Member

    Thank you for sharing your story, Robin!

    I had a couple of tick bites, took antibiotics after each one, Herxed, and thought I had taken care of the problem. Then six months later I developed Fibro. I keep getting re-tested for Lyme and co-infections, and the tests keep coming back negative. So it's been really frustrating. I don't want to take antibiotics unnecessarily.

    And my situation is complicated by the mold poisoning I'm healing from and low thyroid function and experimental treatments. Sigh.

    Anyway, I'm so glad you are better!