When we finally received the Lyme diagnosis late in 2015 and I began researching once it was apparent that 1 month on antibiotics was not going to cut it, all the advice I received online and in phone calls from other Lyme parents was related to finding an LLMD - a Lyme literate medical doctor.
Wrapping my head around that was hard enough - it quickly became evident we would be heading outside of the medical mainstream. The learning curve and trust factor was steep and I was overwhelmed with a terribly sick child whose night sweats actually caused our washing machine to break from overuse among other things.
Because we did not, like many Lyme patients, see many specialists prior to the diagnosis - which nevertheless took at least 3 appointments with the pediatric group along with my insistence on bloodwork for 3 illnesses that could be causing the symptoms - I did not realize that finding an LLMD was just the first step to assembling a team of caregivers to help deal with the myriad issues that can crop up during treatment. One year into treatment and we are still building that team! Being proactive and compiling some names before you need them will do a lot to alleviate the stress when a weird and potentially dangerous symptom appears.
Below I list a few of the possible specialists you may want to line up in advance. If you can, start compiling a list early on so that you are ready when you may suddenly need them, particularly the cardiac and mental health professionals because they can be risky areas with a need for sudden and immediate care, and in our personal experience - an eye doctor as well.
Aside from asking your LLMD for referrals, I also recommend joining local online or in-person groups to search and/or request recommendations because you really need to have Lyme literate or open-minded professionals on your team and the best way to find them is from your LLMD and local families who have tread this path before you. See the Support & Advocacy tab on this site for national support groups who also maintain lists.
Here's the list in no particular order and remember all really must have direct experience with Lyme/tick diseases:
Working wife and mom to two, including a teen son who was diagnosed with Lyme and other co-infections from an unseen tick bite with no bulls-eye.
Touched by Lyme-Leland
Lyme Disease Challenge Blog
Tired of Lyme
Lyme MD-Dr. Jaller
All Things Lyme-Cameron Blog
Better Health Guy
Abounding in Hope blog-Christian family of 6 w/Lyme
Lyme-Debug Your Health
Realm of Caring