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

For me, Long Covid has been cyclical with ups and downs. My initial symptoms in early 2020 were amnesia, fatigue, and nerve pain. About a year after Covid, I felt great, had a ton of energy, started walking every day, and started losing weight. Two years after Covid, I had lost 50 lbs, and realized I had no appetite; I looked great, but I was disappearing in front of my eyes, and felt like I was dying. Three years after Covid I had a Tonic Clonic seizure and was diagnosed with Epilepsy. The Epilepsy diagnosis has re-framed one of my initial Covid symptoms in 2020 - what I described to doctors as "Amnesia" was likely a Focal Seizure. I'm now into my 4th year post Covid. I feel good, and have my appetite back. Epilepsy is now my #1 concern. The seizure meds are strong meds, and are not yet fully controlling the seizures. After the Epilepsy diagnosis, I don't think Long Covid can throw anything else at me, but never say never with Covid.

This is somewhat my mantra, but consider being tested for celiac and keeping a food log to see if you are sensitive to any foods/chemicals. Turns out that my neurological symptoms are mostly triggered by gluten. I might have avoided 50 years of seizure meds if I had known that back then. Still on meds, but only half dose/2x day of Keppra (better than phenytoin). My celiac was triggered by H1N1 14 years ago, but I have been gluten intolerant for 50 years. Covid and LC from March 2023 didn't worsen my autoimmune diseases, but did hit my cardiovascular system and slow me down for 8 months (gone now).

I’m so sorry that you’re suffering this long due to Covid. I had a mild case of Covid or so I thought, in December of 2022. I lost my taste and smell on day 2 of the virus and still to this day, June 6, 2024, don’t have it back. You mentioned Stellate Ganglion Block Injections, I’ve had 3. 2 injections on the right side of my neck and 1 on the left. I will be going in June 13th for a 4th on my left side. I will be asking my doctor about a Platelett Rich Plasma injection using my own blood. It’s a process where your own blood is somehow cleaned and then reinjected back into you. I am at a stand still and at this point will try just about anything. I currently have only salty, sweet and sour tastes on my tongue when I eat anything. No flavors of any kind. May I ask you how many Stellate Ganglion Block Injections have you had. I wish you well on your health journey.

I am so sorry to hear that Epilepsy has been one of your long-COVID consequences. That sounds really frustrating and scary. I am glad you were able to arrive at a diagnosis and start treatment. I hope your care team can keep working on finding ways to get your system more in balance and manage your condition. COVID sure has a whole slew of odd and challenging symptoms that come with it. Keep hanging in there, and give yourself credit for all that you have overcome so far in your long-COVID journey!

I am sorry to hear your loss of taste and smell has lasted so long! That has to be so frustrating. I hope you find a therapy that helps soon. I know the feeling of wanting to try anything to get better; the Platelett Rich Plasma injection sounds interesting and worth a try if you can get it.

I had two Stellate Ganglion Blocks. At this point I don't plan to get more (and I was the one who wanted it, so my provider isn't giving me a recommendation on how many to get). It helped immediately after the first one with lung symptoms...I could take a deep breath for the first time in 3 years, to the point I had to spend a couple weeks getting accustomed to breathing the proper way again after the tightness in my chest lifted after so long. It did not seem to help with other symptoms, like fatigue, periodic crashing, weak or over sensitive immune system, some heart rate issues. I never lost taste and smell so can't speak to that part. Thank you for your well wishes; I wish you well on your path to healing too!

I have had 5 bouts with Covid and am in the NIH study at UNMC under Dr Vasey. I found this interesting because I never really equated some of the things I’m going through to depression and anxiety. I just chalked it up to old age. I am 70, went to alcohol recovery 2 years ago, recently stopped sugar intake, and am in otherwise good shape. In fact, with all the NIh tests they tell me I am a remarkable specimen… except for the brain fog, fatigue and depression. I used to be on citalipram for minor depression that was brought on by hip surgery in 1996. Once it took effect, I never had it again until Covid. I stayed on small dosage until a year before Covid and was fine until about a year after Covid. My GP put me on Duloxitine and didn’t have much luck. Now we’re trying Zoloft and am 6 weeks in with nothing . It’s frustrating because I have responded well to Citalipram in the past. Should I ask to get back on that or wait out the seraphim?
Being in such good shape otherwise, this whole thing is frustration and making it very hard to properly enjoy my retirement.
I plan on sharing with my NIH people tomorrow. So far we haven’t discussed depression. They recognize that I have Chronic Fatigue Syndrome but say there is no treatment for that.
In all, very frustrating.
Looking for any suggestions.

Hey There! If Celexa (Citalopram) worked in the past, I would ask about being put back on it again versus the Cymbalta (Duloxetine). Praying for you.

I sometimes feel foolish when I am hopeful when starting a new therapy. I have had so many failures after two and a half years of this nightmare.
But I agree at the start of something new, I will have a few better days while thinking maybe I will find relief.
When hope is totally gone, it is over.

I was thinking about that. I am just getting tired of changing antidepressants because each time, there is a 2-6 week term to begin effectiveness

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.