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.


Feb 052007

There was an anonymous post pointing out that my back rash looks a lot like a Bartonella rash. For some reason this older comment never seemed to prod me to investigate more, but it should have. Regardless, I read some of the paper, and agree that it is possible that I have Bartonella; especially in light of seeming some of the pictures here. Historically, I have had significant foot/sole pain when I wake up in the morning, and then the pain gets progressively better as I progress through the day.

Originally I thought I would only have Bartonella and not Lyme since I had been tested for Lyme. Upon reading more a negative test for Lyme is not necessarily conclusive (and I supposes a positive one isn’t either). In that case I suppose it is likely that if I am positive for Bartonella than I am most likely also positive for Lyme. I suppose I should have done more research into the Lyme test rather than assuming that it definitely ruled out an infection. More curious, if I am positive for these infections, is where I got infected by a tick. I certainly did plenty of hiking, in the woods, when I was young; but that was >10 years before my diagnosis.

Regardless, I need to return back to the doctor and get some additional tests done. I certainly don’t want to be treating the wrong disease. On the other hand I don’t like the unknown, and I’ve been franticly trying to get up to speed on Lyme, and the related tick born diseases, to ease my worry. I will probably schedule a neurologist appointment sometime next week to discuss this, and how to best proceed.