Posted 6/27/2019 1:24 AM (GMT 0)
I'm so sorry, WBF. I see my doctor similarly, after a similar process. He's a great person, very open-minded, and knows a lot, but his treatment does focus on supplement after supplement for any new symptoms. At one point I was taking 45 different supplements each day, which was overloading me, and which I could not keep up with because I could eat so little. One day about a year ago, I stopped all of it and started over, and I have been consulting him for specific questions ever since but not treatment plans. He rolled with this fine.
My last LLMD wanted to be in charge of my treatment, but that presented problems, too, like when I disagreed with a treatment strategy and he would pout about how I wasn't doing that one thing and that must be why I'm not well yet. (The big thing was that he wanted my partner to take off work for four hours three times per week to get me vitamin C IVs for $100 each for at least two months. Not an option.) But at the beginning of my treatment, when I first met him, I found his confidence reassuring, and that is worth something.
At this point, a doctor has to earn my trust and high regard. I know enough other Lyme patients who see the same doctors I have and find them brilliant and helpful, when for me those same doctors have been sounding boards at best. Knowing what we do about the medical system and about the extreme ignorance surrounding these illnesses, it feels foolhardy (to me) to trust someone else to make decisions for me, especially about a complex illness about which I have been reading and thinking nonstop for the past 3.5 years. (And those friends with Lyme who have seen the same doctors as I have and trust them all seem to feel like they are always making progress ... despite never actually getting better.)
But! There are certain personality types, I believe, who only can relax (from a sense of existential anxiety) when they have genuine faith in something. For a lot of people that is religion, or conventional medicine, or their work. For those people, I can understand how it's important to feel held by the universe in some way, or at least by a good doctor, because stress is the absolute enemy with these chronic inflammatory illnesses! So I'm not saying there's a one-size-fits-all perspective here....
I read a (slightly corny) quote a few months ago, something like, "The moment you stop looking to someone else to save you is the moment you become your own hero." I read it around the time I reframed my relationship with my doctors and other medical practitioners (I am the president of my health and they are my cabinet!) and read Toxic. I was tired - hopelessly, achingly tired - of feeling disappointed by people who were supposed to be helping me, so I stopped expecting them to help. The strategies I employed in that time were the ones I have believed in the most and seen the most progress from, for what that's worth.
I'm not sure if any of that is helpful at all, beyond commiseration, but I thought I'd share my thought process, in case it resonates. Big hugs to you. This is such a lonely feeling.