The best way to be appropriately evaluated and treated for tick-borne disease is to see a Lyme Literate Medical Doctor (LLMD). These practitioners are often trained by others in the Lyme field and specialize in the complexities of diagnosis, testing, and treatment of tick-borne disease. LLMDs can be pricey, however, because many of them don’t accept insurance (for information on why that is, see “Why Isn’t My Lyme Disease Treatment Covered by Insurance?”)
Perhaps you’ve been diagnosed with Lyme by your primary care doctor, but you aren’t feeling better after a short course of antibiotics, so now you’d like to see an LLMD. Maybe you have symptoms and risk factors for tick-borne disease, but your standard tests have come back negative, so you’d like to see an LLMD for a detailed clinical evaluation and specialized testing. Maybe you suspect you have a co-infection, but your primary care is only familiar with Lyme. You’ve done your homework and have found an LLMD in your area, but the price of an appointment is prohibitive.
Now what? There are several options you can explore:
Before just walking away due to sticker shock, ask the LLMD’s office if they offer a “super-bill” that you can submit to insurance for reimbursement. Though the office does not participate with insurance, you may be able to submit the “super-bill” yourself and get at least partial reimbursement for your out-of-pocket costs. Call your insurance company to learn how to submit a claim yourself and to find out what kind of coverage you can expect for an out-of-network provider (a provider who is not otherwise covered by your insurance network). If a claim is denied, ask your insurance company about the appeal process.
Given the high cost of appointments, some providers may offer payment plans. Call the provider’s office to find out if that is an option.
Many busy LLMDs have a Nurse Practitioner (NP) or Physician’s Assistant (PA) working in their practice. These practitioners see patients individually, under the guidance of the LLMD, who oversees the care of all patients in the practice and trains the NP or PA. NPs and PAs can order tests, make clinical evaluations, and write prescriptions. The cost for an appointment with an NP or PA is usually less than the cost for an appointment with the LLMD.
Different LLMDs have different appointment costs. The one in your area may be too expensive, but there could be another one just a little farther afield. Think about how far you’d be willing and able to travel to get good and affordable care. (You can search for an LLMD through GLA’s search engine.)
If your primary care doctor or other physician who is covered by insurance is not well-versed in Lyme disease, they may be willing to learn. Some doctors are set in their ways, but others are more open to collaborative care. Try gathering information about Lyme disease to bring and discuss with your doctor and talk together about the complexities of Lyme testing and the importance of a clinical diagnosis. You can do this with treatment protocols, too. (For more, see “How to Be an Advocate with Your Non-Lyme Doctor”.)
There are several organizations that offer financial assistance for the high costs of Lyme disease appointments and/or treatment. On the Financial Assistance Resources page, GLA maintains a list of organizations that help with treatment access, reimbursement, and federal and state assistance programs.
Lyme disease support groups can offer more than emotional support, which is very important; members may also be able to recommend doctors or financial assistance resources. Groups come in different formats, from formal in-person meetings, to small in-person or remote discussions, to online Facebook groups. To find a support group, check out GLA’s Support Groups page.
Through the Peer-to-Peer Mentor Program, GLA can connect you with a fellow Lyme disease patient, or a knowledgeable caregiver of one, who can offer you one-on-one support. The mentor may have advice for you on finding or affording an LLMD. This program is free.
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