Anyone have any success with going to an LC clinic?

Best wishes to you. It is not an easy path trying to find care.

I know.Thankyou so much!

Looks like the telehealth restrictions start 12/31/2024. Hope they revise this date out. Ridiculous.
https://www.medicare.gov/coverage/telehealth

I have seen information on Stanford's LC Clinic. Has anyone had experience/information about an outstanding ENT at Stanford? I need surgery to remove airway scarring (posterior glottic stenosis) from intubation due to Covid. I am looking for the best ENT surgeon. I live in Cali but will go anywhere in the US to get the best care.
BTW, I had surgical consult with two ENTs at Hopkins in Maryland. I followed up with one to ask if any special consideration was needed due to my having LC. He suggested I follow up with my pulmonologist. Arrrgh!! LC is not a pulmonary disease. So frustrating when medical "experts" are so compartmentalized. Good luck to all in their LC Clinic searches.

We are in Chicago. My wife has been suffering from calf pain both legs as well as burning in legs, feet and toes. We went to Northwestern Memorial Hospital Long Covid clinic to see a neurologist. I agree with the above posts. They are just data collection researchers with no help. They sent her back suggesting she just go for swims and do non weight bearing exercises. Completely useless bunch IMHO.

Our experience with Dr. Karolnik was a complete waste. No help at all. Asked my wife to take Tylenol and swim.

@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.

Those of us who were already dealing with CFS / fibromyalgia have been running into the same road blocks for years. I am still hoping that the number of people (including me) suffering from long covid will force the medical community and governments to find answers, but I'm not optimistic that it will be any time soon. Unless they themselves suffer from CFS/Long Covid, I don't think the vast majority of medical practitioners really understand how debilitating our symptoms are.

I am using the Leading Edge Clinic established by Dr. Pierre Kory. The telehealth visit are not covered by insurance. Some of the blood work is. The first test they ran showed I still have spiked protein in my blood. I have Long Covid (non vaxxed). I have MECFS, MCAS, PAH, Type 1(previous) Hypothyroidism (previous), Migraines, Tinnitus, stomach issues, Brain Fog….probably missing some diagnosis. I think I have had every test, seen every specialist and non would believe that this is all Covid related. Now thanks to Dr. Kory’s team the puzzle is solved! I am also waiting for results from my micro clot test. They have prescribed triple anticoagulants and supplements to treat and rid me of the spike protein.

Jane, I agree with you. Acceptance that yes, there is chronic illness, taking rest, listening to your body and staying positive that this to shall pass by focusing on the spiritual strength has helped the most over the last 8 months since this started. Pray for your recovery and good luck.