How are the super long-haulers doing 3 to 4 years out?

You have described a journey very similar to mine. Got Covid in November 2020. This last Christmas I had a few days where I was hopeful it was going away, but I crashed with the fatigue after about 3 weeks of near normal. At least I got some hope that life might be normal someday. I’m going to have my blood tested for micro clots soon and if it is positive I will proceed with treatment. I’m glad you have had some good days as well as that gives us some hope!

I will pass along something that I have been trying for a month now and it seems to help with the crushing fatigue. Royal Jelly that is made by honey bees to produce queen bees that outlive all other bees in the hive. This natural phenomenon is an amazing story in itself and I encourage folks to read about the process.

I use the royal jelly that has been mixed with honey. The dosage I take is reduced in volume and frequency because I have had issues with reactions since having Covid. I have had to give up most of my supplements, give up or change some of my Rx’s and stay away from some foods, but this is a topic for a separate discussion.

I had Covid for the first time in December of 2021 and then again in August of 2022. Like most on this forum, quality of life has gone downhill. I am female and in my early 60’s and already have a rare Primary Immune Deficiency that took 25 years to get diagnosed. I have been on immunoglobulin infusions since 2012 that I do at home sub Q weekly. I had to leave my job on disability retirement.

As someone who has been living with a chronic illness for many years, I want to encourage you to take one day at a time. If you are able, do one thing each day that allows you a small victory. It can be as simple as making the bed or unloading the dishwasher or putting away clothes that have sat in the laundry basket for a week. One little victory a day adds up and is good for the soul. If you can’t do anything today, that’s okay. Maybe tomorrow you can . Chronic illness, whether temporary or life long, steals from our physical health. It wants to steal our mental health as well. One little bitty thing a day that we accomplish can make a difference. Hold on and don’t give up. Focus only on today and find that one thing that you can do. Even if it’s just putting the toilet paper roll on the holder. You can do it. You are a conqueror.

I have tremendous respect for the SSRIs, SNRIs, and the whole collection of other antidepressant classes when applied to the care of patients who experience depression and anxiety as an inextricable part of the struggle to find answers and solutions during a prolonged illness. These have, at times, really lifted me up to the point at which I could become lots more effective in finding my way back to more normal living. This time around, though, they did not come through for me, and I was compelled to reach back into my roots in natural healing (where Western herbalism has held the greatest appeal for me). I recalled learning, years ago, how pharmaceutically purified concentrates of herbs used in folk medicine have, after clinical testing in sizable populations, gone on to become mainstays of medical care in Western Europe, especially . . .and specifically remembered an old product called Kira, a St. Johnś Wort product that was once (and may, by other names, still be) beloved even by lots of primary care physicians in Europe. As I have shared before, this time out, I discovered that the international nootropic community has fine-tuned its position on St. Johnś Wort in a way that focuses on exactly how it should be dosed for particular variations of depression and anxiety. Yesterdayś Kira is todayś Perika (made by Natureś Way), and these days, the nootropes tout it for, among other things, somatoform depressions and anxieties, i.e., those mental states that have either come on as a result of physical illness and/or entail harmful thought patterns that distort oneś outlook on illness. Once cleared of any Rx meds, I gave Perika a try, recently, and memory again returned on how pleasant a product this can be -- and, if it works at all, how much more rapidly than Rx meds this seems to take hold. St. Johnś Wort (SJW) is DEFINITELY one of those herbs that has the potential to cause secondary issues like sun sensitivity, and also to interact, sometimes in risky ways, with Rx meds and other herbs. But with good supervision and openness with oneś doctors -- ideally doctors who will take the trouble to read past the counterfactual hysteria surrounding some herbs and look at the serious, peer-reviewed studies on these herbs -- I believe there is lots of untapped help for us out there through careful and creative reliance on herbs. The U.S. has very few medically qualified herbalists practicing today, alas. And so we still have to hope to be able to turn our regular physicians into at least agnostics about herbal medicine, who will give some well-studied picks at least a chance. But physicians can themselves become charlatans when they memorize a few easy bywords about this or that herb or other supplement, and don´t apply the same analytical thought they ordinarily apply to Rx meds to these different substances. In any case, even with herbs that agree with one and help, patience is required. But thereś always something really rewarding about the study of herbs and their actions. It brings one closer to nature, which is, even by itself, potentially quite healing.

You have described a journey very similar to mine. Got Covid in November 2020. This last Christmas I had a few days where I was hopeful it was going away, but I crashed with the fatigue after about 3 weeks of near normal. At least I got some hope that life might be normal someday. I’m going to have my blood tested for micro clots soon and if it is positive I will proceed with treatment. I’m glad you have had some good days as well as that gives us some hope!

I’m so sorry to hear you’re suffering so much and after all this time. I’m a grandma too and although inam able to babysit, it thoroughly exhausts me. I have not experienced the serious lung issues that you have, but developed lung nodules that are scanned regularly and I’m constantly getting sore throats and upper respiratory infections. ( I have one now) I have had three bouts of Covid, first in 3/22, second in 2/14 and third in 2/27. My major symptoms are fatigue, horrible fullness and relentless rumblings in my head, body pains and cramping in feet, horrible insomnia, lack of concentration for many things, memory impairment, low(bowel)motility,
general dysautonomia. I am cold most of the time and coldest when it’s hot outside. I’ve been on low dose naltrexone for over a year and it did give me some relief from headaches mostly. I have come to terms with the fact that I will have these maladies chronically for the rest of my life. I too am a writer/poet and all my energy goes into my writing. I’m very thankful that I’m able to focus on that. With all of this, I am grateful because I know others like yourself, are suffering so much more. I wish you the very best.