A disturbing experience with the Institute for Neuro-Immune Medicine

[Centime Tara]

I hesitate to post this because I know that this place has helped a lot of people, but I don’t feel right about keeping silent either. I’ve been seeing a doctor there via Zoom after an initial appointment in person. I flew down to Miami at some expense and was impressed with my first visit. The doctor (not Nancy Klimas, who runs the place) spent a long time with me, was easy to talk to and seemed knowledgeable. Since then I’ve had three Zooms with her, in which I felt she was thorough and concerned. I like her a lot! BUT: she has given me three pieces of erroneous information, and I’ve lost faith in her. 1. She told me I should get off Seroquel, of which I take a tiny dose for sleep, because it counteracts the effects of the antidepressant (an SSRI) that I take. 2. She also told me to get off Wellbutrin, which I’ve been on for years, because it causes anxiety. Finally, she put me on a thyroid drug (Levothyroxine) because my morning cortisol was slightly high. I just saw my psychiatrist, who is a psychopharmacologist, and he said that actually Seroquel boosts the efficacy of SSRI antidepressants, and that while Wellbutrin can cause anxiety if the dose is increased too quickly, it‘s highly unlikely that it would cause anxiety in an ongoing way. He felt she was misinformed about both drugs. I did a lot of research and all of it backed him up. As for the thyroid, I saw my endocrinologist and he said that prescribing Levothyroxine for a tiny (subclinical) elevation of cortisol was flat out wrong. He explained that cortisol is controlled by the adrenal gland, and that the thyroid is on a different biochemical loop entirely, and that her recommendation made no sense. So I’ve decided to stop seeing her, which is very disappointing because I really hoped that they could help me. The Institute for Neuro-Immune Medicine is considered one of the pioneers of treatment for ME/CFS, so this is especially upsetting. I wonder if anyone else has had a similar experience?