Has anyone completely gotten over Long Covid? Please post here

Bermuda -
That’s the best news EVER, But - Do you think the doctor was sincere in saying LC eventually goes away? Many here say they’ve had it for many years!!! Did the doc estimate WHEN? But thank you for relating it.
I’m set to go to Mayo for 5-7 days to be “treated” for fatigue but I’m wondering what their treatment for fatigue actually IS! So many here say there is NO effective treatment (or can’t find a doc who WILL treat them.)
And, second, did they treat you for fatigue? Third, was their treatment effective for you? And, finally, HOW effective was the treatment? 25%, 50%, 75%?
Other important questions: (1) What did 5-7 days at Mayo cost? and (2) Does Medicare cover the cost?
I suspect you’re right that LC patients who got good results with Mayo’s treatment don’t bother to write about their success here. But Mayo’s docs should have records from follow-up studies. Did you ask the Mayo docs to relate the effectiveness of their treatment? I asked the intake person there how they treat for LC fatigue but he refused to tell me.
Thanks again for your helpful comments, and best wishes to you. I hope you can take the time to address all these questions for the many of us suffering -for years - with this terrible disease.
Stuart

@stuartkjones4 best wishes at Mayo. I visited Rochester September 2023 and all tests indicated ‘normal’. Hopefully they’ve learned a few things and have had better results. I moved on to Dr Bruce Patterson and after 6ish months feeling better. His working theory is that symptoms are caused by vascular inflammation, cure the inflammation and the symptoms go away.

Thanks for your kind and thoughtful note, A.R., That’s great news that you’re feeling better. What a relief, eh? I have a few questions for you if you have some time to answer, hopefully.
First, does “feeling better” mean that you had a lot of fatigue but it subsided following Dr. P’s treatment?
My primary problem is daily fatigue, nearly all day.
Second, did you have weakness in your legs that improved with treatment?
I have a lot of that, and wonder if it results from inactivity or from the disease itself.
Third, did Medicare reimburse you for the $1000 cost of the blood test/diagnosis? Brian (at IncellDx) says Medicare will reimburse for that.
Fourth, did your doc say that other patients he treated with Dr.P’s meds had some success with it? There is NO testimony -other than yours - that his meds work. We all wonder.
Fifth, what was the cost of the treatment - meds and doc bills?
Sixth, did you have any unpleasant side effects?
Seventh, who was your doc? Brian gave me only two names in all of the Chicago area!!! They are overwhelmed with LC patients, as I can’t see one, Dr. Crevier, until October!!
Best wishes to you for continued recovery, A.R,

Stuart

@stuartkjones4 best wishes at Mayo. I visited Rochester September 2023 and all tests indicated ‘normal’. Hopefully they’ve learned a few things and have had better results. I moved on to Dr Bruce Patterson and after 6ish months feeling better. His working theory is that symptoms are caused by vascular inflammation, cure the inflammation and the symptoms go away.

Hi I am about 85 % over this Dam covid after 4 years

P.S. I’m willing to travel to your doc if it’s not too far. Or, did you work with your doc virtually?

PPS. I’ve listened to many of Dr. P’s lectures and interviews and have faith in his theories but the folks at Northwestern Med LC Clinic in Chicano expressed skepticism about his treatment for some unknown reason. Another writer here said his visits at Northwestern’s
LC Clinic were useless, so maybe their skepticism was just competitive trash talk.

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.

Thanks for your kind and thoughtful note, A.R., That’s great news that you’re feeling better. What a relief, eh? I have a few questions for you if you have some time to answer, hopefully.
First, does “feeling better” mean that you had a lot of fatigue but it subsided following Dr. P’s treatment?
My primary problem is daily fatigue, nearly all day.
Second, did you have weakness in your legs that improved with treatment?
I have a lot of that, and wonder if it results from inactivity or from the disease itself.
Third, did Medicare reimburse you for the $1000 cost of the blood test/diagnosis? Brian (at IncellDx) says Medicare will reimburse for that.
Fourth, did your doc say that other patients he treated with Dr.P’s meds had some success with it? There is NO testimony -other than yours - that his meds work. We all wonder.
Fifth, what was the cost of the treatment - meds and doc bills?
Sixth, did you have any unpleasant side effects?
Seventh, who was your doc? Brian gave me only two names in all of the Chicago area!!! They are overwhelmed with LC patients, as I can’t see one, Dr. Crevier, until October!!
Best wishes to you for continued recovery, A.R,

Stuart

Bermuda -
That’s the best news EVER, But - Do you think the doctor was sincere in saying LC eventually goes away? Many here say they’ve had it for many years!!! Did the doc estimate WHEN? But thank you for relating it.
I’m set to go to Mayo for 5-7 days to be “treated” for fatigue but I’m wondering what their treatment for fatigue actually IS! So many here say there is NO effective treatment (or can’t find a doc who WILL treat them.)
And, second, did they treat you for fatigue? Third, was their treatment effective for you? And, finally, HOW effective was the treatment? 25%, 50%, 75%?
Other important questions: (1) What did 5-7 days at Mayo cost? and (2) Does Medicare cover the cost?
I suspect you’re right that LC patients who got good results with Mayo’s treatment don’t bother to write about their success here. But Mayo’s docs should have records from follow-up studies. Did you ask the Mayo docs to relate the effectiveness of their treatment? I asked the intake person there how they treat for LC fatigue but he refused to tell me.
Thanks again for your helpful comments, and best wishes to you. I hope you can take the time to address all these questions for the many of us suffering -for years - with this terrible disease.
Stuart