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Yes; good to know someone is vastly improved. LC here since St. Pat's Day, 2023; usual stuff; debilitating fatigue; PEM with sleeplesssness; lightheadedness, loss of balance, occasional vertigo; rash (still got that, comes and goes); weird blood results (IgM about eight times normal, still looking into it); peripheral neuropathy; foggy brain, terrible memory problems, etc. I kept careful records, waited a year to get into a LC cliinic at Northwestern Memorial Hospital in Chicago. It consisted of one two-hour evaluation with a neurologist, lots of questions but no answers. Seems like with most LC clinics we are the subjects of their research... and many are closing because fewer people are turning up and there are really no "medically approved" treatments. Their recommendation: Monthly Zoom support/self-help meetings with others in the clinic; referral to "cognitive rehab" at Shirley Ryan Ability Lab, seven or eight sessions and really nothing I hadn't already figured out through research and reading this forum (pacing, lots of rest between efforts and not much else); also a referral to check out a wonky blood result (immune system is out of whack, working on that with a hematologist now, nada); and a prescription for Amantadine (stimulant, anti-viral, which they are studying now for usefulness in combatting fatigue but O! the side effects... so I'm not doing that. Otherwise, the head doc said this: "Most people with LC get better; we don't know why... maybe they eat more peanut butter... " Humorous, encouraging? Not very helpful. Since they didn't suggest any follow up visits, (you can have a virtual appointment with a PC if you request it, but nothing new there, just a check-in), so I can't imagine how a clinic knows people get better, let alone why. I agree... I think people just drift away if we get better... in the beginning we're very motivated to "figure it out," eventually research leads us to the same dead ends and we just ... lose interest in reading all about it. In my case, after a two and half years, I AM gradually getting better... fatigue is less debilitating, PEM less frequent and intense; brain is clearing up a bit... still got the rash. Maybe at 60-65% of "old" me now, from < 40 most days in the past. No days spent on the recliner waiting for bedtime so that I could NOT get some restful sleep, etc. I'm hanging in, meditating, reading positive stuff (The Beauty of Dusk by Frank Bruni; How to be Sick by Toni Bernhard) and now I can push myself a bit to exercise, do stuff, walk more... and those efforts used to flatten me for days. No prescription medications, no more alcohol, a better diet (sort of Mediterranean) daily supplements (multi; D, C, and Macuguard for the macular degeneration. (Oh yes, I am OLD.) The biggest change is probably attitudinal; from obsessive research, fury and outrage (and a little self-pity) at the whole thing, especially the medical profession, plus most people's lack of empathy/ignorance about LC... to something like acceptance without resignation. Some people truly have it a lot worse... not the life I ordered, but it's the one I got, etc. We are tough, we are survivors... and we have each other for understanding. Here, no one has to explain why they haven't just gotten better yet... And on the brighter side; research seems to be zeroing in on tiny particles of the Covid virus still dug in to various organs, very hard to detec... offering a direction for research that looks promising. Maybe not for me, but for the younger patients... all this takes a lot of time apparently. And money for research ... so...maybe a very long time.

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Replies to "Yes; good to know someone is vastly improved. LC here since St. Pat's Day, 2023; usual..."

Jane - a wonderful essay on LC!! Thank you, and I’m glad you’re feeling better.
I’ve been to NMH LC Clinic (Aasheeta Bawa) who had me tested for sleep apnea (negative) and said they treat LC with Amantadine and one other med. that I can’t remember. Yes - a terrible long list of side effects that seem worse than my fatigue, dizziness, weak legs, neuropathy and occasional nausea. Apparently you wouldn’t recommend pursuing that route. I’ll just try that peanut butter regimen. Did Dr. Karolic (head neurologist?) tell you that Amantafine would help with fatigue? neuropathy? muscle weakness? love life? ANYthing?
Please write again; your account enlightening to all of us, I’m sure.

Best wishes, Jane,

Stuart

I’m sorry you’re suffering. I too have Long Covid, since December of 2022. My symptoms have gotten better since having the virus, but I believe my first symptoms began after the very first Covid Vaccine. I detected a metal taste in the back of my throat after receiving it. It wasn’t until I actually caught Covid, the virus, that I lost my taste and smell on day 2 of the virus. I also had the usual symptoms, balance issues, stuttering, body tremors, which I still have on occasion if I push myself too hard, fatigue which is much better. I still don’t have my taste or smell, but my other symptoms are better. I also went to the Northwestern Covid Clinic and saw Dr. Koralnik, the Chief of Neuro and Infectious Disease and he told me that I would not be getting my taste or smell back if it’s been over a year! I’m choosing not to listen to him! Is that the person you saw? I don’t know how 2 people with Long Covid can be told different things? I think they’re just guessing at this point, which doesn’t set well with me. We are tough like you said, but it’s getting very old!

My rheumatologist has asked what year I had first covid and first/second covid vaccine. He is seeing different severities of LC depending on which Covid strain clients had. I was diagnosed with autoimmune LC with liver and lung involvement and Telangiectasia. My first Covid infection (mild case) was fall of 2020 which was the Delta strain. I received my vaccines in 2021 spring...Phizer. I am 58 y/o female who smokes. I have a history of high blood pressure and obesity. I have had 4 Covid infections since...seems like each time I have it, it is a worse case.