The diagnosis and treatment of certain illnesses can be daunting for patients and their medical providers. Add limitations imposed by medical insurance and common practice and it becomes even more difficult to navigate, especially for anyone whose energy is sapped by a chronic condition.

This is especially true for those suffering from tick-borne diseases who routinely experience difficulty with medical diagnosis, treatment and cost. Diagnosis can often take several tests sometimes over months or years, while the patient wonders about mysterious symptoms and worries about medical bills.

Imagine if the patients got to design the medical approach.

That was the goal of a workshop Boothbay Region Health Center held Sunday, Sept. 16 at the Community Center. With patients, experts, doctors, nurse practitioners and health coordinators from the practice on hand, the exchange of information opened with the workshop’s goal explained by president Patty Seybold.

“The Health Center is the first stop for people who come in with a tick-borne disease,” she said. “We want to learn what it is like for a patient and how a healthcare facility should best deal with that experience.”

What made the program even more unusual is some of the medical providers are also suffering from tick-borne diseases and so were participating from both standpoints.

Identifying what worked and what didn’t, finding lyme-literate specialists, the cost of treatments not covered by insurance, and naturopathic and allopathic alternatives were all discussed.

Patients had struggled with referrals to a specialist only to learn the treatment was costly and not helpful. Even when patients are referred to a specialist, as Paula Jackson Jones, president and co-founder of Midcoast Lyme Disease Support & Education pointed out, the specialist may not be trained in tick-borne illnesses.

Dr. Allan “Chip” Teel summarized the challenge medical providers face. “You have to have a lot of tools in your tool bag. It’s not simple and there are a lot of trade-offs so it’s complicated for physicians,” he said.

The second portion of the three-hour workshop was devoted to letting patients design what should happen when they reach out to a medical provider. This included the need for tests to be accurate, quick and definitive.

Insurance may not cover the tests. Midcoast Lyme Disease Support & Education has a fund to assist patients unable to pay for an accurate test.

Patients also expressed the need to have their symptoms respected by the medical provider and not dismissed or wrongly diagnosed.

Above all, the need to provide a comprehensive team of caregivers who would share information and be available to patients whenever needed was identified.

Seybold said in a written summary of the workshop’s findings, “Our health coordinators and primary care providers need to partner with these referrals to ensure that the patient record and treatment plan is comprehensive, up-to-date, accurate and that everyone is working well together on behalf of the patient.”

Patients and medical providers all felt the workshop had so successfully identified key needs for treating and managing tick-borne diseases, Teel proposed it be adopted for all chronic diseases.

BRHC is a primary care and full service family practice open seven days a week. For an appointment call 633-1075. Walk-ins are also welcome.