posted
Can't find a PCP that takes my symptoms seriously. I've been undiagnosed for two years and yet all my other tests come back normal. Researching my symptoms has yielded the same results over and over again. I'm completely frustrated and in need of help.
Posts: 2 | From Pennsylvania | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but you will not find a PCP that takes your symptoms seriously unless you just happen to go to a doc who really knows something about lyme disease. And, that would be rare.
I went from doctor to doctor for 10 years before an endocrinologist thought to test me for lyme disease. I went to the best, including Johns Hopkins.
And, all blood work will come back normal. Mine did. That is because routine bloodwork does not find lyme disease.
So, to be examined for lyme disease, you have to specifically search for a lyme specialist. See Support Groups on the left side of the page. Contact the ones in Pa and in Ohio. Ask for lyme specialists there.
I sent you the little that I have for your area. The best lyme doctors are on the east coast where lyme is much more prevalent. So, if you are willing to travel to the D.C. area to see a good lyme doctor, let me know.
Your frustration will end when you are with a good lyme specialist--meaning one whose practice is devoted to lyme disease.
Look at the symptoms list in the Burrascano Guidelines, pages 9-11. Make a very complete list of every one you have. Take it to your first appointment with the lyme doctor. This is very important. Lyme is diagnosed based on symptoms, medical history, tests, and response to a trial of lyme treatment. Burrascano Guidelines are here:
Seeing a lyme specialist is very expensive. So, if you want to tell us your symptoms before you lay out the big bucks, we can give you our opinions. Basically, the more symptoms you have from Burrascano's list, the greater the likelihood of lyme disease.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Looking at the list, I have almost all of the symptoms save for about 5 or 6. I don't have the constant flu like symptoms with fever and sore throat. I have yet to experience seizures, hallucinations, and joint swelling. I have not experienced belspalsy. Everything else on the list are things I struggle with daily in varying degrees. Some days are better than others.
Posts: 2 | From Pennsylvania | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Then it would be well worth your while to lay out the money for a lyme specialist.
Hope you can get in with someone good right away.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
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