Has anyone completely gotten over Long Covid? Please post here

@stuartkjones4 A very brief history . . . figuratively speaking I have been through every Doctor in the 2 major networks in Charleston, SC and went to Mayo Rochester. A few other random treatments like acupuncture and cranial sacral. Many great people along the way trying to help and I am grateful, but no results. All tests normal and nothing really helped other than applying Mayo's moderation regimen. I turned to Dr. Google and Dr. YouTube, what else is there to do? Filtered out the snake oil salesman and thankfully there are Doctor Groups and Medical New Reporters genuinely trying to help. Thats how I found and selected Dr. Patterson. To the punch line . . . Dr. Patterson's blood test is the only test out of 100s that showed abnormal results. I have never been so happy to be labeled abnormal in my life! 🙂 Between test #1 and #2 my bloodwork improved. Between #2 and #3 bloodwork has stalled so we will see what my virtual appointment tonight reveals.

P.S. When did you get treated at Mayo? How long before you got better? Which symptoms got better?

Thanks for your reply, Beachbum. I’m glad Mayo’s “moderation” regimen worked for you. What is it? Could you give us a description of it? I’m set to visit Mayo for 5-7 days in August but it sounds like that might be expensive and useless. One writer wrote here that it was useless. So what IS that moderation regimen all about?
My blood test also showed many abnormal biomarkers ( mostly IL - interluken - readings.) Did the “100s” of other blood tests you took also test for IL markers?) I’ve had many other blood tests that were normal, but they did NOT test IL biomarkers.
How did that recent blood test turn out? Any improvement in the biomarkers?
Best wishes, Beachbum,

Stuart

@stuartkjones4 My "100s" of other blood tests included just one Interluken which was normal at Mayo Rochester. All other blood tests were typical blood testing regimens. It wasn't until Dr. Patterson's team where they mentioned many interlukens and other markers in their testing regimen that showed many out of bounds results.

I left out a detail about my feeling better. I can now exercise without crashing and within a set limit, I can engage in conversations, read, and listen to podcasts and what's being said 'sticks' in my head and I can recall details said hours ago. All that was impossible prior to Patterson.

Mayo's program is pretty extensive with follow on virtual coaching. They teach a course of moderation with a theory that you reprogram your neural pathways. It only helped me to understand I needed to back off physically and mentally and find a line not to cross over. Not good enough for me.

From blood test 1 to 2 to 3 I was/am 14 out of bounds to 9 out of bounds to 9 out of bounds. Testing shows a stall and I feel like I have stalled. Will see what the Doctor says tonight.

Great that you can now exercise and remember conversations, etc., Beachbum. HOW does that moderation program work to reprogram neural pathways? That sounds like gobbledegook to me. What symptoms does that help? Did it work for you? If so, which symptoms improved?

Most important, what meds did your doc prescribe for you? Were they Maraviroc and Lipitor?
Any others?
How long did you have to wait to get treated? Months? I can’t see a doc to early October.

Thanks, again, Beachbum,
Stuart

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.