Granted a Lyme literate doctor is hard to find, but not impossible to locate.
You would think with all of the press about Lyme disease and all of the people with symptoms that go unexplained until they receive a diagnosis of Lyme that physicians would get on board, fast. Well, if you have Lyme or have suspicions that you may have Lyme you will find that this is not the case.
If your family experiences are like ours you have been referred from one doctor to another and yet another without finding remedy. You have been to the "big name clinics" in medicine only to be told, "It's all in your head." My stepson, who is being treated for Lyme refers to this as "lazy doctoring."
So, why aren't those doctors in some sort of Directory?
Lyme diagnosis, treatment, and the very existence of the disease is a hotly contended issue among those in the medical community: physicians, insurance companies, and pharmaceutical companies alike.
Although a Directory of Lyme Literate Doctors sure would make life easier for patients and their families, physicians are adamant about not participating in such a Guide.
Lyme Literate Doctors work long hours. Many have a team in place to treat patients seven days a week. They do not have room in the day or in their office(s) to take care of more people. They can not afford for their office staff to spend all day on the telephone answering questions from hundreds of information hungry people who suspect they have the disease.
Add to this the understanding that by law medical professionals must not answer those questions lest they be mistaken as a diagnosis, over the phone. All to say a Directory of Lyme Literate Physicians is out of the question.
Should patients try to get their family practitioner to test them for Lyme?
Lyme literate doctors do not rely on just one test; they run a series of tests to come to the determination of Lyme. If your family practitioner is not familiar with these tests you may be fighting an uphill battle trying to get him/her to even consider Lyme as the source of your health problems.
So, what's a patient to do? How are patients supposed to find a Lyme literate doctor?
Find someone who has had Lyme, now has his/her life back and ask "who diagnosed and treated you?" The Lyme associations are a good place to start. Although there are just a handful of Associations across the country and may not be one in your state, that is OK. They are a good source of information for those of us with the disease.
Be aware that Lyme Associations as constrained by the laws of their not-for-profit status are not able to recommend physicians. These associations are operated by Lyme patients who volunteer their time to answer phone calls and emails.
So, if you call Lyme associations for referrals have patience as you may get voice mail instead of a live person. Leave your message and wait for them to return your call.
When you get the names of doctors, many find it helpful to schedule appointments with these physicians and interview them to make certain that what they say makes sense to you and to determine which physician will partner with you towards the goal towards getting your life back from Lyme.
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