MedicalNerd, with these complex chronic illnesses, there is so much going on, and every case is different. The bottom line is that no one has just one thing wrong, and treatment needs to address a lot of angles, and can take a long time. It's so hard to be patient! I have seen dozens of doctors who vary widely from offensively dismissive to exploitative. From "You're fine, stop wasting my time with your baseless health anxiety!" all the way to "Massive things are wrong with you and you need constant, expensive, invasive treatment from me, even when it makes you worse!" Some have meant well, others not so much. It's important to figure out which doctors to ignore.
In other posts, you have mentioned mold, Ehlers-Danlos, and tick-borne illnesses, any one of which can cause a host of conditions all on its own, and most of which are not areas most doctors know much (if anything) about
. Amass your trusted team, and don't worry about
what the other doctors say. If there's someone you must see who is outside of that trusted circle (like maybe you need to go to the dermatologist to have a wonky mole checked out) then you can keep them on an "information diet," meaning don't bother mentioning Lyme. Some on this forum have found doctors they trust completely, and I have found doctors that I like and trust up to a point, but my mental health really turned around when I read the sentence, "The day you stop expecting someone else to save you is the day you become your own hero." You're doing the right thing by asking questions here and looking into things for yourself. You might need to try dozens of things before you notice a difference. Reading the work of doctors who treat complex cases, such as Neil Nathan's Toxic, can be very helpful. But also, be sure to take breaks from research mode and experiment mode. We're all anxious to feel better, but it can't be rushed.
You're not alone in feeling overwhelmed and hopeless! But there is reason to hope.