@gsgambhir, Ugh... sorry to hear of your wife's experience; extremely disappointing. Looks like those of us who show up at the LC clinics are mostly guinea pigs for research. Helps to know research is happening, to become aware of how little effective treatment has resulted so far, and to keep our expectations low. Many who post here have seen doctors who order tests and treatments with little or no improvement, brief remissions and/or side effects of drugs resulting in more harm than good. My extensive research doesn't show much that's definitive. I've had LC for 14 months now and the only thing that's improved is my grudging acceptance of the need to "pace," and of the fact that I seem to have a debilitating chronic illness and need to learn to live with it while not giving up hope for effective treatment. I will be seeing Dr. Karolnik in September, if they don't cancel again, and I'll let him know I'm not in pain and I can't swim. We'll see what he does with that.

I’m sorry to hear it was such a negative experience. When did you have the consultation? I am only going on my second appointment in a few weeks, but I believe I had a much more positive experience because I saw Dr. Koralnik’s PA, Aasheeta Bawa.

I’m a longtime patient in Neurology at Northwestern because my conditions precede Long COVID, and in my experience the neurologists aren’t necessarily helpful. I get far more out of seeing the NP and PAs, and Aasheeta does video visits for follow-up, so if your wife did want to talk to her, the stakes would be low—you wouldn’t even need to go into the office.

Or, I strongly recommend Dr. Anna Jonas in the Osher Center for Integrative Medicine at Northwestern. She is fantastic and has been seeing chronic pain and chronic fatigue patients of all kinds since before COVID. She is my PCP and has worked with me to come up with a plan for my symptoms with actual interventions.

But honestly, as someone who’s battled chronic fatigue, et al, well before COVID, I expect very little out of my specialists (neurologists in particular) other than prescriptions. Physical therapy and rehab geared toward neuroplasticity and figuring out creative ways to address my worst symptoms has given me the most traction.

I’m sorry you and your wife had such a negative experience. I’ve definitely been there; I might be experiencing that same frustration as early as in a few weeks when I have my follow-up…