I have Lyme disease: my discovery after 15 years with ME/CFS and two with Fibromyalgia

Misdiagnosis is more common than we think when it comes Lyme disease!

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7 thoughts on “I have Lyme disease: my discovery after 15 years with ME/CFS and two with Fibromyalgia

  1. Prairie Girl July 25, 2016 / 3:36 am

    I’ve been dealing with CFS for close to 10 year and I’ve lately read of that some ME/CFS people have been finding out they have Lyme disease. Your post has convinced me to ask my doctor for a Lyme test.

    Liked by 1 person

    • Read Between the Lyme July 25, 2016 / 10:38 am

      Hi! Yes I was glad to find you on Danny’s meet up! I saw that you have been dealing with CFS for awhile. I was first diagnosed with CFS and fibromyalgia back in 2012. But I pursued the CFS dx luckily and I tested positive for Lyme. I’m so glad you are going to ask your doctor about it! Only one caution, many doctors have no real knowledge of Lyme and tests are up to 50% inaccurate at least the main stream test. But I still think it would be worth it. I’m looking forward to being bloggy buds!! 🙌

      Liked by 1 person

      • Prairie Girl July 25, 2016 / 2:55 pm

        Awesome, me too! Thanks for the heads up on the test – I read that the proper course of action upon testing negative is to have another test done after a while, so I’m prepared to do that. Thanks for your blog!

        Liked by 1 person

      • Read Between the Lyme July 25, 2016 / 3:36 pm

        Oh then you are already going in the right direction! I tested 100% CDC positive first time Western Blot. I’m glad because if not I’m quite sure it would have taken me years longer to figure it out. I had heard about Lyme when I lived up north but it is never talked about here in Texas. Not on anyone’s radar.

        Liked by 1 person

      • Prairie Girl July 25, 2016 / 4:47 pm

        I live directly way above you in Saskatchewan – I drove all the way down to south Texas with a friend two years ago. I always knew I’d love Texas, and I did.

        I’m going to mention the Western Blot test to my doctor. Is it considered better than others?

        Liked by 1 person

      • Read Between the Lyme July 26, 2016 / 1:56 am

        Western blot and Elisa is what is used here in mainstream medicine. Most insurances will cover it, But….It can be up to 50% inaccurate! I usually hear people say they tested negative with this test. Many people use Igenex labs but it is not covered by insurance and runs about $250 I think here in US. They are based in California I think. Maybe Google Lyme testing and check out the WB. And check out ILADS.com This is the International group for Lyme and Co-infections.

        Like

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