posted
Seeking Dr in Salt Lake City, Utah Las Vegas, Nevada Denver, Colorado (or near by)
Almost a year ago I developed a huge rash on my inner thigh about a month after a backpacking trip in Europe. Figured it was a spider bite. It took about a month to dissipate, but I remained achy, and never saw a Dr. for it. A couple of months later I started getting really bad migraines and a stiff neck, thought it was possibly a sinus infection. My primary care provider thought it was maybe sinus infection too and decided to treat with antibiotics instead of waiting for an x-ray of my head, since I had a history of sinus infections as a child. Didn't get better so I went back, by this time I was generally achy with pain in my wrists, some trouble sleeping, numbness in my face, memory problems, and a general feeling of not being well so the doctor ran a bunch of tests and referred me to a neurologist. At this point I mentioned the rash and the neurologist decided to test me for Lyme. Everything else came back negative, Lupus, Myasthenia Gravis, MRI and EEG were clear, all except the Lyme titer. The Neurologist referred me to an ID specialist at the University Hospital and a Neuropsychologist for a cognitive evaluation for the memory problems. Neuropsych spent two days testing me, and reported that the problems I was having were consistent with Lyme. The ID specialist said that the PCR result was too low to be positive and that the lab reported a negative on my Western Blot. That doctor said that because I didn't have a fever, etc, that there were no signs of an active infection and that I didn't have Lyme, she was not open to answering my questions about the difference between North American and European Borreliosis and suggested I had syphilis (even though the neurologist had tested me for syphilis and that came back negative). I went back to the neurologist who suggested I get a second opinion from someone willing to discuss my tests results with me so that we appropriately rule out Lyme based on my full presentation and not just what's on a piece of paper. In addition to the headaches I also have a red achy elbow and a puffy knee. I would like a physician who has actually worked with Lyme Disease rule it out instead of a medical student who's only read about it in a reference book.
Thanks
Yellowutah
Posts: 3 | From UTAH | Registered: Feb 2008
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Try the Lyme Disease Assoc. website below. I'm not aware of anyone in Utah, but the website will give you the closest docs to the zip code that you enter.
posted
Yellowutah, What lab did you use for your tests? And I don't understand the 'low PCR' my understanding is that it is or it isn't. I live in Idaho, tried many ducks, spent lots of money, and had similiar responses and non-diagnosises as you.
Finally I flew to Palo Alto to a Lyme specialist. I only wish I had done it seven doctors ago. I had two previous lab tests, all negative plus doctors didn't know quite how to interpret them. (there was little on them to interpret come to think of it).
I finally used a specialty lab, positive result, doctor called it 'false positive'. That did it for me. No more messing around.
If you have to travel some distance IT IS WORTH IT. Don't mess around proving what you don't have any longer. I don't think there is a Lyme doctor in Utah. There isn't one in Idaho I know that. I hope you won't waste any more time with ducks.
Electrafoggy
Posts: 16 | From Moscow, Idaho | Registered: Nov 2007
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Thank you for your reply. And I was sorry to hear about your troubles.
The lab they used is affiliated with the university hospital here in Salt Lake. It is an excellent lab, by many standards, however I question some of the ways in which my tests were measured.
When I tried to talk to the ID specialist, she was...dismissive.
Nowhere on the testing orders (which I saw) was there any indication that I should be checked for a European strain of Borreliosis rather than the North American version.
Also it was not indicated whether host or microbial polymerase was used in the PCR, and if microbial from which variety.
Both of these can affect test results.
They also wouldn't give me full results of the Western Blot, only ``Negative''.
I'm currently pursuing a degree in medical laboratory science, so these types of tests aren't foreign to me. Which made it all the more irritating that I was being treated like an idiot.
But I think you're right, I'll probably have to go to someone who has at least seen European Lyme.
Thanks,
Yellowutah
Posts: 3 | From UTAH | Registered: Feb 2008
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bettyg
Unregistered
posted
SOB, SCROLLING ON BY, since i can't read long, continuous block text not broken up into paragraphs.
i did send you the instructions on how to edit your post...
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