More than 200 symptoms; still "you're the first"

Hi J, I share your frustration. I too have heard “you’re the first we’ve seen with that” whenever I saw a doctor about my Covid symptoms. I was one of the first Covid infections in the Orlando area, so doctors were clueless in the beginning. The first neurologist I saw for nerve pain said they typically see those kinds of symptoms in IV drug users (I am not). Years later, I find it hard to believe I’m the only person in the Orlando area to develop seizures after Covid, yet that’s what the Long Covid clinic here tells me. Here we are 4 years out and the medical community is still connecting the dots. Hopefully more treatment options will help. Most important - take care of your sleep - get your doc to prescribe something to help you sleep if necessary. Sleep deprivation causes its own issues - your brain needs sleep and rest. Covid has affected my sleep also (hard time staying asleep) so my doc prescribed something and it helps. All the best, -Miguel

Hi J, I share your frustration. I too have heard “you’re the first we’ve seen with that” whenever I saw a doctor about my Covid symptoms. I was one of the first Covid infections in the Orlando area, so doctors were clueless in the beginning. The first neurologist I saw for nerve pain said they typically see those kinds of symptoms in IV drug users (I am not). Years later, I find it hard to believe I’m the only person in the Orlando area to develop seizures after Covid, yet that’s what the Long Covid clinic here tells me. Here we are 4 years out and the medical community is still connecting the dots. Hopefully more treatment options will help. Most important - take care of your sleep - get your doc to prescribe something to help you sleep if necessary. Sleep deprivation causes its own issues - your brain needs sleep and rest. Covid has affected my sleep also (hard time staying asleep) so my doc prescribed something and it helps. All the best, -Miguel

Deeply appreciate your emphasis on sleep, here. Since COVID, I have had more nights of not more than 2 or 3 hours of sleep than ¨great nights¨ when I can sleep between only 5 and 6 hours. I do have a history of insomnia, but like others here, I know, without a doubt, that my sleep deprivation now, however much related to a pre-COVID vulnerability, is a whole new animal for me that coincides quite exactly with the beginning of my COVID recovery. If doctors simply would treat reported symptoms that are new or very different from our health histories, and that coincide with a COVID infection, wouldn´t this open new areas of inquiry in a direction that could conceivably lead to finding a UNIFIED root cause (or limited set of root causes) of long COVID? In other words, whoever maintains the databases of reported long COVID symptoms could be channeling each newly reported symptom (even if not 1000% confirmed to be COVID-related) to the thinkers who are earnestly searching for a single or small cluster of common pre-COVID backgrounds that seem to predispose particular people to long COVID, with the expectation that these thinkers will try to identify links across many or most of the reported symptoms, on a road to hypothesizing a key set of predisposing factors that may be reversible. We already know that post-viral inflammatory dysregulation DESCRIBES many reported long COVID symptoms/disorders, but that is simply an observation of the immune status of many long COVID patients, rather than something that points to a deeper root vulnerability that gave rise to this post-viral dysregulation. Sure, long haulers can sometimes feel better on courses of systemic steroids and other immunity-suppressing medications, but suppression of one of the common characteristics of many of our symptoms is far from being something that reaches deeper and helps our bodies to reverse this inflammatory abnormality. For these reasons, I am most intrigued by the emerging interest in chronic B1 (sometimes only subacute) deficiency as a factor possibly predisposing us to long COVID, because this, in my view, does reach deeper and potentially points to a possible solution (and a surprisingly simple one) that might spare us from lives of living permanently on steroids, biologics, and other superficial fixes. This is not to say we should reject pharmacological palliatives. We need these desperately in order to keep as active as possible, but what I want to see lots more of is greater study of what predisposed us followed by proposed solutions arising out of any predisposing factors that may be correctible via currently available therapies. With respect to B1 deficiency, when seen as a possible predisposing cause, this is a bit tricky, since those who measure B1 levels are finding, today, that about 85% of patients tested for thiamine deficiency are, in fact, deficient. Moreover, there is a burgeoning movement of people currently not deficient in B1 undertaking high-dose B1 supplementation for nootropic and immunity-enhancing benefits. (This movement relies heavily on the fact that it is nearly impossible to suffer toxicity even from high B1 supplementation.) Regardless, I see the B1 protocols that some long haulers use these days to be an expression of a yearning for a unified cause theory that I hope will become a valid goal of the ongoing medical research into long COVID.

There are days, @earlylonghauler, that suppression of symptoms would be enough to allow me to function. I know it doesn't get to the root causes and that suppression only lasts so long.

Like you, I'm not sleeping. 3 hours of fair rest is the most at a stretch. I'm exhausted. Trying to ensure I can still work is tough and I push daily.

Reading your posts and others, I take from them lists to present to the numerous doctors who just are willfully ignoring me. They nod and say they should follow this more closely and then nothing.

Here's to us. We'll be in medical texts one day and one day, maybe others will be safer.

Wishing you rest.
- Joan

And I stand in admiration of your tenacity and courage, Joan. Getting through every single day functionally is a tall order. It appalls me that we have to take information from patient support group posts to doctors simply in order to persuade them to care enough to start making important connections across what is happening to all of us. And thank you for joining Miguel in flagging sleep. There are times when I seriously wonder whether even potentially very effective approaches for me can possibly work when I am so relentlessly sleep-deprived. For what itś worth: The sleep-focused supplement I am trying now is Reishi mushroom extract. (I have deep respect for mushrooms like Reishi and Lionś Mane.) So far, itś not clear to me that it is directly supporting sleep, for me, but I will continue with this. My insomnia may perhaps be exacerbated by the intense anxiety I have developed since COVID. I don´t want to make too much of this, but I actually now believe that I have developed somatoform (aka somatic symptom) anxiety disorder (in which the patient has difficulty shifting focus away from a particular symptom). It is very risky suggesting this diagnosis to a doctor looking at our post-COVID syndromes, because even physicians confuse somatoform disorder with hypochondria and malingering, outdated and denigrating, but still popular, monikers for people who simply worry about getting sick all the time), because in FACT, some of our symptoms are so disturbing and disabling, that ANYONE would find it difficult to shift focus away from them. Nonetheless, I accept that somatoform disorder is a disease entity separate from generalized anxiety disorder, but I also protest loudly that it is NOT the same as malingering, hypochondria, or Munchhausenś! So what do I use to try to abate this somatoform focus? : 3 daily doses of a patented form of St. Johnś Wort (made with precise, medicinally effective concentrations of the herb). In the U.S., this seems to be available only through one manufacturer, right now (Natureś Way), under brand name Perika. I follow the Nootropic community a bit, and from experts in that community, I have learned that for somatoform anxiety, two doses of 900 mg daily (for a daily total of 1800 mg) are required. That means 6 Perika tabs daily. I have been delighted and surprised that for me, this amount is easily tolerated (and stimulating in a pleasant way) and that it may be starting to make a dent in the crippling anxiety. Slow going, but possibly real progress.

Oh @hrojzen0922 I am NOT tenacious - I just don't know what else to do. I am so tired all the time. Like you not wanting to mention somatoform (thanks for the explanation) to docs, I won't express my depressive moments because then that is all that is heard. After I posted earlier, the person w/ whom I had a telemed visit from the long COVID clinic who refuses to say I have it - even when I asked - because my symptoms are ones THEY don't know! - called. We went round again. I am paying a care coordinator bec I already hate (truly!) paperwork and balancing schedules to help me navigate through this. A most amazing person who knows me & my medical issues bec they once worked for my PCP of 26 years until he retired.

Your ideas for sleep are ones I'll take under advisement. Thanks. (I smiled when I read "Lions Mane mushrooms - a fan of "Clarkson's Farm" on Netflix or Prime, they grew the mushrooms and discussed drying them for use as a supplement. I digress which I do.)

Here's to us. Here's to someone at Mayo reading this. I'd find a way to pay to go there and be fully examined and find some help to just a) be able to sleep and b) understand that the major symptoms are not my imagination.

Oh @hrojzen0922 I am NOT tenacious - I just don't know what else to do. I am so tired all the time. Like you not wanting to mention somatoform (thanks for the explanation) to docs, I won't express my depressive moments because then that is all that is heard. After I posted earlier, the person w/ whom I had a telemed visit from the long COVID clinic who refuses to say I have it - even when I asked - because my symptoms are ones THEY don't know! - called. We went round again. I am paying a care coordinator bec I already hate (truly!) paperwork and balancing schedules to help me navigate through this. A most amazing person who knows me & my medical issues bec they once worked for my PCP of 26 years until he retired.

Your ideas for sleep are ones I'll take under advisement. Thanks. (I smiled when I read "Lions Mane mushrooms - a fan of "Clarkson's Farm" on Netflix or Prime, they grew the mushrooms and discussed drying them for use as a supplement. I digress which I do.)

Here's to us. Here's to someone at Mayo reading this. I'd find a way to pay to go there and be fully examined and find some help to just a) be able to sleep and b) understand that the major symptoms are not my imagination.

More to be appalled at, as I read about that telemed encounter during which you are STILL not even being granted status as a long COVID case. I honestly don´t get how it can damage the quality of research into long COVID for reports of ALL otherwise inexplicable new syndromes that develop after COVID to be taken under serious consideration. The failure to register and certify all heartfelt reports (for which there could be no logical motive for falsification or exaggeration that I can think of) and then to classify these as at least ¨tentative¨ or ¨credible¨ sequelae of COVID, so that when greater numbers of the same symptoms accumulate, they can quickly be brought in to the bigger picture of research, is bewildering to me. Moreover, WHAT IF some sequelae, in an individual, CAN in some way be associated with a pre-COVID condition in the reporting patient??? That does NOT mean that these sequelae are not ALSO COVID-affected, e.g., made worse after COVID or made more persistent after COVID. I would not, in fact, be pursuing B1 repletion for myself if I hadn´t realized that I almost certainly CAME to COVID with the pre-existing condition of a lifelong (and possibly inherited) B1 malabsorption disorder, which explained a long slew of autoimmune/inflammatory problems I´ve had, and also a valvular heart disease I developed in mid-life. In fact, I am now assuming that possibly most of us with probable or confirmed long COVID can look back at our histories and spot health challenges that somehow foreshadow the long COVID pictures we each manifest. Everyone already KNOWS that long COVID is one of many post-viral syndromes in humans . . . Would it invalidate COVID research, e.g., if all patients complaining of long COVID who had also suffered prior post-viral syndromes (like CF/ME after Epstein Barr infection) were permitted to be classified as COVID long-haulers? I am no scientist, but surely there is some confusion among clinicians who are in charge of determining whether we really have long COVID. It is brilliant of you to have retained a care coordinator to bring more power to your case. All of that said, from what I am learning here, I am beginning to think that maybe the worst thing we can do is go to a long COVID specialty clinic, because if we are turned away there, we are then authoritatively labeled ineligible for further care within that rubric. By sheer luck, my internal medicine doctor, who has a really powerful mind (and is gentle and humble), has listened to me very intently about all this, and also my pain/rehab doctor even wants to try, on me, the standard therapies for Mast Cell Activation Syndrome, fibromyalgia/chronic fatigue, and disabling Generalized Anxiety Disorder. I haven´t jumped at the pain docś offers yet, but only because my internist is very enthusiastic about my B1 protocol, and has approved it and even suggested that it may well work, sparing me a new adventure trying to convince an allergist/immunologist that COVID made something go terribly awry in my previously healthy respiratory system. So I now think that finding the most intelligent and diligent doctors who are generalists (e.g. internists or pain/rehab/functional medicine devotees) may be lots more helpful to us than are long COVID clinics. Possibly the long COVID clinics are waiting for some completely novel single therapy to be concocted for all of us (?) before they are even willing to help us. Yet what could that silver bullet possibly be, UNLESS it involves jump-starting our deepest metabolic functions like mitochondrial function. And we ALREADY know ways in which to do that. . .Some branches of functional medicine already do nothing BUT mitochrondria-focused medicine. . .Have you tried such a physician? I think that physicians from many specialties can develop a subspecialty in functional medicine, these days. Now I am rambling. . .But when you are feeling stronger, perhaps you can dig into some of the functional medicine literature now available online. . .Lots of good books on this now, written for various audiences. . .And there are non-MDs who hold themselves out as functional medicine practitioners, e.g. NDs, DCs, etc. . . I am leery of the non-MDs, though, in this area. My model for real genius in functional/metabolic medicine is Dr. William Li, MD/PhD, who invented the Eat to Beat diet programs. Following his science (which is staggering. . . He is a former cancer researcher extraordinaire), I reversed my cholesterol and A1c problems in completely in only 8 weeks, before I got COVID (and also lost 20 lbs utterly without effort). The man is a genius. I only wish he were also currently involved with long COVID research. . .