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  • Confusing Test Results for Lyme... please help!

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    Old 12-09-2013, 07:18 PM   #1
    Rella123
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    Confusing Test Results for Lyme... please help!

    Here is my story......I have been experiencing double vision for over three years now. I can no longer wear contact lenses and now have glasses with prism lenses. After extensive testing by a neuro-ophthalmologist, he was unable to confirm the cause of my double vision. I had extensive blood work for Lupus, RA, MG, Lyme and an MRI of my brain. All came back negative. Due to the process of elimination, I was told I have ocular myasthenia gravis (although the blood work came back negative for it). Ophthalmologist said that many times these tests comes back as a false negative. So for the past three years I have been living in fear of having this disease and the possibility of it turning into full-body MG. (Even though no blood work supported the diagnosis.) I also suffer from bouts of Fibromyalgia.

    During my recent annual physical, my primary physician and I discussed my vision problem. I brought up the fact that Lyme can cause double vision and asked if I could be tested again. He agreed and I just received my results in the mail.

    The test concludes I am negative for Lyme...HOWEVER, I did test positive for Bands 23, 30, 41 (IgG) No Bands were positive under IgM. It says that five bands are needed to be present for a positive diagnosis of Lyme. I only have three.

    I am quite concerned because I know some are specific to Bb (23,41). Is it true that the only way I would acquire these antibodies is through Lyme Disease? If I do have Lyme, this explains the mystery of my vision problems, and probably also the cause of all the joint pain associated with my "Fibromyalgia". My blood work also shows slightly elevated liver enzymes. This has happened a few times in the past 5 years, only to return to normal after retesting a few months later. I just read today that Lyme can also be the cause of periodic elevated liver enzymes?

    I understand that IGenex might be the next step in finding out whether or not I do have Lyme, or do the test results I just received confirm it? I also understand that if I was living in California, I would be treated for Lyme since they only require two bands present. I live in New York. How can I have Lyme in one state and not in another? So confusing and frustrating!!!

    I am going to contact the neuro-opthomologist that ran the Lyme test a few years back and see if there were any positive bands then. I never looked at the results myself, but only went on his word that it was negative.

    I'm scared to think that I may have been carrying around this disease for quite some time now and worry that any neurological damage I have may be irreversible, even with medication. Should I pursue more testing through IGenex? Any thoughts or support would be greatly appreciated. Thank you!

     
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    Old 12-10-2013, 02:49 AM   #2
    tess201
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    Re: Confusing Test Results for Lyme... please help!

    Quote:
    Originally Posted by Rella123 View Post
    . Should I pursue more testing through IGenex? Any thoughts or support would be greatly appreciated. Thank you!
    Rella123,

    Yes, Igenex is really the only lab that can accurately test for Lyme. However, lyme is diagnosed primarily by symptoms, tests only secondarily. Also, it's Igenex and CDC (not California) that have different criteria for judging whether lyme is present.You need to see an LLMD - lyme literate medical doctor (they can then order the Igenex tests). There are a number of LLMDs in NY. This is the only type of specialist that can diagnose and treat LD. Most do not take insurance. Wish you the best with this.

    Tess

     
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    Tags
    double vision, elevated liver enzymes, fibromyalgia, lyme disease, myasthenia gravis



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