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

Thank you for sharing your story! I can't imagine what the long-term loss of taste and smell is like. I bet eating would become a chore rather than something to be enjoyed or at least registered in the brain. Sorry the SGB treatment didn't do much for you. I had such high hopes for it especially after the first treatment helped my lungs considerably, but the second treatment didn't do much and hasn't helped fatigue so far so I think I'm done with those.

Thanks for the suggestion about getting thyroid tested! I appreciate any and all suggestions at this point. I have had my thyroid levels checked a couple times post-COVID and all is normal. Histamines have been an issue for me too, mainly in the form of lung irritation and skin sensitivity. Quercetin has helped me a bit with that. Good luck and I hope you regain some taste and smell soon!

Thanks for sharing your insights. That sounds like an important lesson learned, and but I am sure you had to work to realize and embrace that fact! I am glad you have found more peace with your limits and are able to manage your symptoms a bit better that way. It's so hard to have to limit oneself but it does help if it avoids a crash. I hope you have the understanding and support you need in your life and networks to respect your limits and keep taking care of yourself till you heal! Thank you for your good wishes.

It's hard to be dealing with long COVID for 3+ years, that's for sure. Reducing stress is certainly a good strategy (though hard in this modern, individualistic world). Knowing there is strength in numbers, hopefully the medical community will arrive at better understanding and treatments for us all soon! Keep hanging in there and continuing on your path to healing.

It is both sad yet comforting to know others are dealing with long-COVID symptoms lasting 4 years. It sounds like you have had a rough go with so many symptoms and attempts at fixing them. I am glad you had a reprieve for awhile but really sorry that things crashed down again. Knowing we are not along certainly helps, and hopefully that strength in numbers means a cure or at least effective treatments is bound to be found! Keep taking good care.

I joined the Long Haul group complements of my Moderna Booster in November 2021. The only time I tested positive for COVID was July 2022 and my symptoms were 'bad cold' like. Can't believe it's been that long. Figuratively speaking I have seen every type of specialist in the Charleston, SC area and in September 2023 went to Mayo Rochester. Their main scheme for addressing LC is moderation. There are many elements to their scheme but moderation is one of them. I would list great sleep as another element, I use my Apple Watch and a couple of apps that provide sleep quality data. Today I feel better, but I do not feel as well as I did pre booster. I journal and reflect to help guide and when I crash (because I still step over my personal 'moderation line') I do suffer more intense symptoms which for me are PEM and Exercise Intolerance. Pre booster I was exercising 45 minutes aerobic elliptical and resistance, 6 days per week. Today I am back to 10 minutes elliptical and 10 minutes resistance every other day. I am grateful for what I have learned and the help I have received along the way and hopeful that with time I feel even better.

I recently became convinced that my long COVID must be closely linked to the strange collection of pre-COVID disorders I have developed over the course of my life, and in turn, I discovered that every last such disorder has been persuasively linked, in peer-reviewed research findings, to thiamine deficiency. With my doctorś approval, I started myself on a thiamine repletion program (leaning, in part, on a protocol popular among Parkinsonś patients), and today I discovered the following validation for my hunch and for my latest course of action. https://www.bmj.com/content/370/bmj.m3489/rr-3 In this connection, I want to flag the towering body of work of Cleveland Clinic physician/researcher Dr. Derrick Lonsdale, who, more than any other single scientist, has laid out the profound and pervasive role of chronic subacute thiamine deficiency in development of a vast array of diseases (which happen to feature many of the most-observed symptoms we struggle with in long COVID). Too soon to tell, but I am excited about how much better I may eventually be doing after arriving at just the right level of B1 supplementation.

I have also lost my taste and smell sept 2020. I also had 3 sgb injections. Please let me know how your 4th injection goes.
Thanks and wishing you all the best

Sorry to hear the booster vaccine made your symptoms a lot worse. I did not respond to the vaccine or booster well either. It stinks because vaccines are so important for the general population, especially since COVID-19 and/or its after-effects are way worse than any side effects from the vaccine (don't we know it!). But in a long-COVID patient, our immune systems aren't working properly and thus don't always respond properly to the vaccine. For me, symptoms went back to status quo about 4 to 5 months after each vaccine. And I won't get any additional vaccines till I am recovered. I hope you'll get back to your baseline soon, even though a long-COVID baseline is still hard to cope with.

Thank you for sharing the information about thiamine deficiency! I had not heard of that before so I am happy to have a new thing to add of the list of potential routes to look into for long-COVID. I hope the supplementation does eventually bring you some relief! Feel free to keep us posted here. thanks again.

I will be delighted to provide updates as I continue with the repletion protocol, and Iḿ so glad that there may be others here who will look into this. For now, I will update with evidence that I started the B1 supplementation a bit too aggressively at the outset, including the highly bioavailable TTFD (one of the synthetic B1s) in the early weeks, before I should have done so, apparently. B1 is a strange and wonderful animal, it turns out. If we try to replete our blood levels and the small amounts we keep stored in cells too quickly, via higher doses or more bioavailable B1 sources, we can experience the ´paradoxical´ problem of our deficiency problems getting worse, rather than better, for a time. (In homeopathy, this would be called an ¨aggravation,¨ defined as a sign that a remedy could be correct, but was given either in too high a potency or too frequently). Paradoxical reactions are well known and understood in the Parkinsonś Disease community that relies on B1 repletion, btw. So my upper respiratory symptoms worsened/relapsed a day or so after I added TTFD to my thiamine HCl supplement, and so I TEMPORARILY discontinued all B1 supplementation in order to allow for a quieting period. (Some recommend suspension for as long as two weeks, in this scenario.) The amount and type of B1 that deficient patients will respond to varies wildly. Only trial and error will get one to the sweet spot in which there is a remission of deficiency symptoms and arrest of progression of illness. So my tentative revised approach is now to start back on an escalating dose of good old thiamine HCl (not mononitrate) to which I will again soon add increasing strengths of TTFD. It is always a good idea to pair any thiamine supplementation with a moderate-level B-complex, moreover. (The B vitamins work best as a group.) But again, the sweet spot for each of us, in terms of amounts and types of B1, is something we must apparently determine on our own. There are patients who get good results on just 100 mg or less of drugstore thiamine HCl, and others who need as much as 1500 mg of some combination of natural and synthetic B1 sources in order to get well. And like long COVID, getting to the sweet spot of better health can be a bit of a long journey. In any case, the only other useful info I can think of to add here is that I have come to realize that I should not shun Rx or OTC remedies that may get me through the day, if any helpful ones exist, as this helps greatly to sustain motivation to keep going in what can be a lengthy process including ups and downs. Since high anxiety came with my particular long COVID markers, I now palliate that with an herbal remedy that is also known for its anti-viral properties (fully expecting that ultimately, repleting my B1 will by itself eliminate my post-COVID anxiety problem., since B1 is famous for helping to control anxiety.) In addition, I make sure to try to be in some form of human company every day, if possible (not always easy or automatic). Iĺl close by sharing that a few days ago, I read a peer-reviewed study report that found (wait for it: . . . .) that it ¨seems¨ to be possible that the reason placebos work is that they activate patients´ ability to hope again. (Duh???) I have, many times, as an average human layperson, seen hope, alone, as highly effective in supporting patients on any course of treatment. The time has come for our doctors to stop being afraid of giving us what they still call ¨false hope.¨ To me, there is no such thing as false hope. Hope is hope, and recoveries that some consider miracles DO regularly happen. When we peel the surface back, we often see that those who recover and overcome tend to people who work at keeping hope and high expections alive.