A. Ask at your local Lyme disease support group’s meeting, or ask a LD patient who seems to be well-informed. Doctors who treat LD generally prefer to maintain a low profile, since there is controversy surrounding this disease. The Lyme Disease Association maintains a nationwide doctor referral list at www.lymediseaseassociation.org. The International Lyme and Associated Diseases Society (ILADS) has a doctor referral service to help patients find ILADS doctors. LymeDisease.org has set up on-line discussion groups for every state, and these can be helpful in finding a knowledgeable doctor. LDASEPA will suggest several doctors that you might consider for your treatment. Contact LDASEPA by e-mail (LymePa@LymePA.org) or telephone (610-388-7333).
Basics – Finding a Doctor
A. First, keep careful track of your symptoms. Use the list in this booklet, check them off and take the list to your doctor. It’s easy to forget to mention something important during an office visit. Make a copy of your list to leave with your doctor. Even if a symptom seems minor, you need to tell the doctor. He needs all the information to make a diagnosis.
If your doctor seems skeptical of LD, you might want to bring some printed literature that may help him or her. Make sure that what you bring is from a credible source (such as a recognized medical journal), and present it tactfully. The Resource section in the back of this booklet will guide you to appropriate information.
Some doctors respond positively to patient input, but many do not. If you are not satisfied with the way you are being treated by your doctor, it may be time to find one better qualified to help you. Most patients with persistent LD have been to several doctors before getting a proper diagnosis and treatment.
Lyme Disease, perhaps more than most conditions, requires the active participation of the patient if good health is to be regained. Your efforts to educate yourself about LD will be well worth the time spent, and your doctor may learn as well.
Request and keep copies of all your test results.
Bring notes reminding you of things you need to tell your doctor. Write down your questions ahead of time.
It may be helpful to take someone with you to your doctor appointment, especially if you feel you are mentally impaired by the disease. A friend or family member can help you remember what to tell the doctor, and help keep track of the doctor’s instructions.
Tracking your symptoms will be helpful to both you and your doctor. Several different systems for recording your symptoms are available on the LDASEPA web site (www.LymePa.org).