How can I find a doctor

[TheysayImcrazy]

My doctors seem to prefer theh idea that I am crazy and a nuisance to the idea that I might have Lyme disease.    They prefer to put a bandaid on the symptoms than find the cause, but the seizures have me scared.

I live in central/upstate NY.  Four years ago, I had a respiratory illness my doctor could not identify.  It sent me to the ER many times.  Since then, I have had breathing problems, joint pains, bone pain, almost constant nausea, hot flashes (They lasted a long time, not like a flash at all), forgetfulness/confusion, Thyroid problems, and now seizures.  I have asked multiple doctors multiple times to be tested for Lyme, but they just look at me like I have two heads.

I have been having seizures for about 2 years now.  They are now coming frequently.  The epilepsy doctors in Syracuse seem to be trying to sweep me under the rug (pretend I do not exist).  The doctors here act as though I have a screw loose and am making it up.  THe Binghamton doctors have tried to chase it down as a lung or heart disease, but have had no results.  I am desperate.  Does anyone know someone who is a specialist in Lyme?  

I have an appt with my primary care physician tomorrow and would liek a Lyme test.  I understand that there are certain tests that are good and others that are unreliable.  Ditto for where they send the samples for testing.  Can anyone give me specifics on what tests should be ordered and where the samples should be sent?

Thanks for sharing your experience.

[ree4tu1]

It's such a disgrace that we are labeled "crazy".  It is simply abusive to say the very least.  I agree with all of the above comments.  I feel for you, truly.

I have been to the Haverford Wellness Center and they will treat you based on your clinical symptoms if you tests are negative b/c they know they are unreliable.

There is also a SPECT scan test which is done in the Philly area which is a detailed view of the brain and shows changes due to Lyme and other conditions, may explain the seizures or a CT Scan or MRI with contrast.

[RonnyRon]

The Haverford Wellness Center in Philadelphia PA

[JackieCalifornia]

Lyme docs can be hard to find, because they have to stay under the radar in some states to keep the med board from yanking their license for daring to think outside the box.  

Here are some websites that may have referral functions, where you fill in your location and they send you back some names, I think.  I've never had to approach it that way.  Also just google/search "LLMD Chicago" or "LLMD Kansas" or whatever area descriptions make sense for you.  You might have to try a couple of different searches to cover all the possibilities.

About what tests to order, your doc will run what he/she thinks is right, so just start with that.  If the doc doesn't already value the tests you ask for, he/she won't do them or won't understand the results even if they are positive.  Taking the first round of tests with your current doc is what I'd do.  And ALWAYS get and keep copies of all test results in your own file at home.  They can be important later for new docs to see.

Let us know how it goes, okay?

[TheysayImcrazy]

Sorry,  Can anyone recommend a doctor who specializes in Lyme?  Seems like all I can find are pediatricians.