Posted 6/9/2020 9:10 AM (GMT -5)
I'm so sorry that you are dealing with this, but remember that you are not alone. We on this forum are here if you need to brainstorm, ask questions, or just vent!
Here's the resource page for the Florida Lyme Disease Association. There are links on the second half of this page for orgs that help to pay for appointments and at the very bottom for organizations that do physician referrals.
https://flda.org/resources/resource-links
Sometimes you can find Lyme doctors who accept insurance. Unfortunately it usually take a lot of calling around and asking questions, since a lot of Lyme doctors don't advertise that they treat Lyme because of controversy, but they can discuss it with you if you call them. Doctors who practice integrative or functional medicine are more likely to be "Lyme literate" than an infectious disease specialist, but that's not a definite rule. (Some on this forum see an infectious disease specialist who they say is great!) I have found Lyme-literate functional medicine doctors who work in community health centers and accept insurance, so it's definitely possible to find medical treatment even if your income is low. Many LLMDs also work with physicians' assistants (PAs) or nurse practitioners (NPs) who accept insurance and can be just as helpful as an MD.
One of the best labs for tick-borne infection testing, IGeneX, is covered by Medicare, as well as some other testing that's important with Lyme, like food allergies testing. That said, there is a lot involved in treatment that is not covered by insurance. If you use pharmaceutical antibiotics, then I believe there are limits to how long they are covered by insurance. So even if your doctor visits are covered, then your treatment may not be covered, at least not all of it. People use the GoodRx coupon website and other tricks to get lower prices on prescriptions.
My LLMDs have varied in price and quality. One worked at a community health center and was covered by insurance, but some of the tests she ordered were not, and of course supplements were out-of-pocket. Unfortunately she turned out to be kind of awful (for example, she told me to stop being so dramatic when I literally woke up unable to move my legs). Another LLMD cost $59 per month just to be a patient but was a good practice and accepted insurance for appointment costs; that said, he wanted me to buy the brands of supplements he liked directly from his office, and he pressured me to get infusions as part of my treatment ($100 each multiple times per week!) which I could not afford, so I left the practice. My third (and favorite) LLMD charges $225 for a half-hour appointment, everything out-of-pocket except for some blood work that's covered by insurance. (He does phone and remote appointments, so you don't have to live nearby to see him.) I saw another LLMD who mostly recommended expensive treatments I wasn't interested in.
Naturopaths, homeopaths, herbalists, and Traditional Chinese Medicine practitioners usually are not able to accept insurance, so I would not recommend that you try to find them, for now. That said, you may be able to find folks in the community (acupuncturists, herbalists, etc.) who volunteer to consult with Lyme patients for free. Reach out to local Lyme support groups and see which resources people have found. Also even some mainstream hospitals offer free or low-cost services and classes that you might find helpful as you recover, such as qi gong, yoga, meditation, massage, and acupuncture.
Another option is to treat yourself with the Cowden protocol (an herbal medicine option). There's a foundation that will help people use the Cowden protocol for free, but someone else will have to remind me which foundation it is. Other herbal protocols, such as the Buhner protocol, also can be a low-cost option. These are common, safe, effective treatments for infections.
Sometimes people have to try a few different treatment options before they find what works for them. Some try prescriptions but don't improve enough and so then try herbs, others try herbs and then try prescriptions, some try both, and some try neither! There are lots of routes to healing from Lyme because it affects every body differently.
Lyme treatment also is not just about killing bacteria. The infections cause damage, and people don't usually get better without addressing the damage and supporting the body. Doctors who treat Lyme will want to make sure you have healthy habits and systems, including: diet, gut, detox pathways (liver, kidneys, etc.), stress, immune system, sleep, exposure to toxins (chemicals, mold, etc.), circulation, nervous system, and mental health. A lot of supplements and some dietary changes usually are involved. You may notice improvement in how you feel just from these things alone.
It's easy to feel overwhelmed at first. Some doctors charge hundreds or even thousands of dollars per visit, and they recommend some treatments that cost a fortune! Keep in mind there usually are cheaper options, and don't hesitate to reach out to us if you are worried. At first, I wondered often whether doctors were trying to take advantage of how scared I was by encouraging me to have testing, treatment, and other things I wasn't sure I needed.
If you cannot find an LLMD that you can afford, then that does not mean that you can't treat Lyme and have a doctor. It took me a very long time to find out that tick-borne infections were in my system. Doctors were happy to diagnose me with chronic fatigue syndrome and fibromyalgia, though, and honestly the things that integrative doctors recommended back then have turned out to be some of the most helpful things for me. My point is that you could get some medical treatment for those syndromes, covered by insurance, and then add in an herbal protocol yourself (very carefully). It's obviously better to have an LLMD you trust, but with money as a limiting factor, that might be a place to start.