Feb 152007

My ongoing investigation to see if I was misdiagnosed with Multiple Sclerosis.

Friday, February 9, 2007
I went to the neurologist last Friday to talk to him about the possibility of Bartonella and Lyme. I showed him my prior Lyme test results (the much less accurate ELISA test instead of the Western Blot) as well as the pictures of my back compared to these Bartonella rash pictures. After looking at the pictures he agreed that they looked alike, but did not remember Lyme looking like that (which it would not be Lyme rash). He referred me to an infectious disease doctor to better investigate the possibility of Lyme/Bartonella. Overall, I was disappointed because I wanted him to run the Western Blot and the CD-57 tests. Doubly disappointed because it will be about a month to get into the infectious disease doctor.

Wednesday, February 14, 2007
Being an ever impatient American, waiting a month seems pretty unacceptable (no regard to the fact that if it is Lyme I have had it for ~7 years – more on that another day) so onto the family practice doctor we use. Of course I suspected that this would be pretty much the same outcome as the neuro visit since no one gets Lyme disease in Texas, and thus has no one has any knowledge/experience with the disease (CDC Lyme Map). Quite to my surprise, on showing him the pictures of my back and suggesting Bartonella he agreed that is exactly what it looks like (and before I showed him the comparison pictures). I also explained that I have had an ELISA Lyme test which had come back negative, but I would like the more accurate Western Blot and CD-57 tests done. He was definitely familiar with the Western Blot (and seemed to at least have heard of the CD-57 test), and agreed both should be run. The longest wait was for the LabCorp techs figuring out what to draw since their on-site manual did not cover the CD-57 (and had never drawn for either type of test). Hopefully I can have the results back in a couple of weeks.


  11 Responses to “Doctor Visits About Lyme”

  1. I was the one who left the last anonymouse comment about the rash. One thing I will caution you on is this – The big name lab’s are not the best in finding Lyme and it’s co-infections. The CDC guidlines for a Lyme diagnosis are horrible. One thing I’ve found is that everyone swears by Igenex for Lyme testing and Lyme’s co-infections. The problem is that Igenex isnt covered by insurance so you have to pay out of pocket for the testing. I’m glad you saw my comment and have followed up.

    Just remember the term “MS” is a term to describe whats happening to your body – not a term to tell you why it’s happening.

  2. waiting is the worst! Stay patient but persistant!

  3. It’s so funny, because you and I are in exactly the same boat. I just had my blood drawn for Western Blot on Valentine’s Day. My rashes look as suspicious (I’m sure) as yours do, and my neuro still tells me I’m crazy for wasting my money with IGeneX.

    But my secondary symptoms are so much like Lyme it’s not even funny. So IGeneX has my money and my blood, and I’ll know in about two weeks how the Western Blot comes out. I didn’t even bother with ELISA since it’s been more than a year that these symptoms have been going on (so it would definitely come back negative).

    What I *do* know is that there are doctors who will help you review your results and, even if Western Blot comes back negative, will help you get the full panel run (which is more pricey than Western Blot).

    Take a look at this story about the doctor I’m seeing (the Canadian Lyme Disease Foundation reprinted the story from my local paper 🙂 Anyway, while Dr. Martz (and IGeneX) do not take insurance, they will help you file paperwork with your insurance company (along with writing letters stating medical necessity for you) to get reimbursement.

    Now, while I’m crossing my fingers for myself, I’ll cross the fingers of the other hand for you. Good luck!

  4. Anonymous,
    Thank you very much for your posts! I am sure I am deeply indebted for what I highly suspect is a Lyme problem. Thank you!

  5. CJ,
    Thanks, it is nice to know I’m not the only one questioning my diagnosis. I am very thankful that I have the rash, and doubly thankful that Anonymous posted the correlation to Lyme.

  6. This ticks me right off (pun intended)! A treatment cost of 2 to 3 grand a month and it’s not covered by most insurance is outrageous. What is wrong with healthcare in this country?

  7. Mouse,
    I completely agree. Lets say I need 4 months of antibiotics @ $3,000. That would be about the amount they would pay for Rebif for a year (probably a little less), and possibly be done with me as a patient for life.

  8. Hello I just stumbled upon this site, I am 24 years old and for the last three and half years have been struggling to get the doctors to understand whats going on. They intially diagnosed me with Fibromyalgia, I became lucky and stumbled upon a doctor who’s brother had lyme and she said she STRONGLY blieves that what I have although all the reg. labs came back negative she is now pushing for the igenex along with a doc i also have to pay out of pocket for! All I know is My husband and I at this point are willing to do whatever it takes being at the moment I can’t even walk without a cane I’m only 24! If anyone has any good advice I would glady accept it!!!! thank you and I wish you all luck as well Nikki

  9. Nikki,
    Good luck!

  10. Ty for the wish of good luck Eric, My primary has sent me for many more tests before she wants me to see the Lyme specialist, she says she wants to make it isn’t something “else” first at this point I feel it can’t be something “else” The symptoms and effects are just too closely related to lyme and when I started the symptoms I was living in a HIGHLY tick infected area. It just fits too well. I will see the docs and get the other tests just to see I guess but I am not cancelling the lyme specialist or the igenex tests !!! Again wishing you all the best of luck ty, Nikki

  11. Nikki,
    Assuming there is positive blood work for Lyme, why is she adverse to sending you to a “Lyme specialist.” Good luck!

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