I really wanted to respond to this. For me, finding relief became a very unwelcome and horrific ‘job’. I did it; I spent endless hours researching, lots of $ on useless supplements, begged my neurologist and primary for help. My sister would help me gather information on LC and go with me to appointments to beg for referrals to clinics. I had constant emergency visits to my dermatologist for biopsies, patch tests, etc. It was a job. Sometimes I would be so ill during the many appointments I attended that I couldn’t speak, my face would tic and shake and, worst of all, I would cry. I’m so happy you have your husband to help. I have my sister but she can’t possibly really get it. I also sought out providers, harassed staff to get me immediate referrals/appointments. It’s hard work and so, so awful when you are so ill. I can’t offer solutions but I really get it. Because LC is not understood yet, it can only be treated symptomatically so the patient has to find specialists for all these symptoms…a neurologist for the tremors, a urologist for the cystitis, an ENT for burning mouth/smell problems, a dermatologist for the rashes, a rheumatologist for the autoimmune issues. I actually recruited my two most trusted doctors, my primary and neurologist, and between the two of them, got referrals that called me. Also, I cannot stress how important it is to catalog all your symptoms before these appointments…I used to keep a diary because every day was different. And…above all…do not let let ANY DOCTOR gaslight you.