Looking for Support in DC

I can feel your distress through this outreaching post. Please try to stay hopeful that you will get past this and ultimately be restored to your life before COVID. I reside in the D.C. region, but I am not currently attached to any particular long-COVID health care program, in part because while I feel certain that COVID, at the very least, tapped in to and worsened some lifelong vulnerabilities that I have amassed, I might not easily be classified as a long COVID case by the currently applicable standards. That said, I have been working with a very creative pain-rehab specialist (for spinal-stenosis-related pain) in the Johns Hopkins community physicians department (Bethesda, MD branch) since before I got COVID (in Jan. 2024), and at my last visit, she indicated that she (and probably other pain-rehab specialists) are now also practicing Functional Medicine (or, at least, their version of this emerging specialty). I then learned that the PACT program in the Hopkins network is a long-COVID-dedicated project that includes specialty care by pulmonologists and also pain-rehab physicians (think emphasis on REHAB). The latter inclusion surprised me -- and pleasantly.

By now, I may actually know nearly as much about Functional Medicine approaches to long COVID as some physicians do (only because I spend massive amounts of time studying peer-reviewed materials on this and digging more deeply into underlying vulnerabilities that may have made me a target for long COVID . . .and not because I have any credentialing outside of being an experienced acute and outpatient-care medical coder and attorney who once specialized in the evaluation of biomedical research protocols).

If the Hopkins program is of any interest, it might be necessary for you to get a referral to it via a Hopkins primary-care or pain-rehab specialist, and these days, appts with the latter typically come with long waits to be seen. But perhaps this is still worth a try.

While I await my next appts. with pain-rehab and with my truly brilliant primary-care internist, I am scrambling to self-treat with over-the-counter solutions that strike me as potentially very effective. In other Mayo long-COVID subgroups here, I have been posting mostly about the emerging science around long-COVID being a species of chronic thiamine deficiency (manifested by mild versions of some of the unique features of Wernicke encephalopathy, the most life-threatening form of thiamine deficiency).

And soon, I may be posting about emerging science around COVID having the potential to elevate or exacerbate already-elevated levels of systemic bradykinin -- a phenomenon that is well-known to develop in the other context of patients taking long-term prescription anti-hypertensives (especially ACE inhibitors and ARBs, and also including the newer beta blockers like carvedilol).

My symptoms are upper and, slightly, lower respiratory and neurological, and so far, I have not been plagued with chronic fatigue or brain fog.

In any case, in terms of local support, the only suggestion I have right now is PACT, but I am willing to bet that the university hospitals around here (like George Washington and Georgetown) have some long-COVID programs under way. And if you would like to explore the possible roles, in long COVID, of thiamine metabolism and/or bradykinin abnormalities, I can recommend several good reads on the former, and one newly published op ed piece on the latter.

Thank you ...a lot of good info there ..
the bradykinin connection may be why one of the symptoms of this latest variant seems to be a constant dry mouth , and needing to drink something constantly . or else u cough ...
I will look up any University programs ..

Oh I'm so sorry. I live IN DC in a high-rise and a neighbor reported that they'd seen another neighbor picking up Paxlovid at a nearby pharmacy - and yes, the other neighbor has COVID. It's out there and this region, based on wastewater since cases are not reported officially, is high.

Help: I wish I could say yes. I had 2 tele-visits w/ the Medstar Georgetown Hospital long covid clinic (?) they call it. I'm to see one of their docs in 10 days. The appointment is only for one of the symptoms; I was told the doc would discuss all.

Have they been helpful? Not at all. The doc I'm going to see I could've found on my own. More, my symptoms have been, from the start (late March 2023) different from most. It was here that I finally found a few people with some of my symptoms.

Sending hope, regardless of how awful we all feel. Sen. Sanders introduced legislation: https://www.sanders.senate.gov/press-releases/news-sanders-introduces-historic-moonshot-legislation-to-address-the-long-covid-crisis/

Good, chessd, and at the same time, venture forth into all the literature you can consume about COVID and the cluster of symptoms you´re experiencing, because soon, thereby, you will know more than any of the long-COVID specialists I have ever heard or read about. In the thiamine-focused community, the thinking is that infection (e.g., COVID, other viruses, bacterial infections and sepsis, etc.) is one of many potential stressors that can throw autonomic nervous system function off, yielding or exacerbating an individualś dysautonomia. And, very dismayingly, Dr. Lonsdale also began to suspect particular vaccines as thiamine-correctible causes of dysautonomia (resembling long COVID), with Gardisil, for HPV prevention, serving as the focus of his case studies in the area. My take on the possibility that COVID vaccines could appear to have set some of us up for long COVID is that BECAUSE these vaccines surely did NOT trigger long COVID in the overwhelming number of vaccinated persons in our population who never got long COVID, it would actually not have been the vaccination that set us up, and was, rather, a pre-existing thiamine-mediated disorder that we had before and when we received the possibly stress-inducing vaccination(s). This reasoning keeps the door open, for me, regarding updated COVID vaccination, something that may still be needed for preventing acutely life-threatening disease. And the vaccination connection does not alter in any way my commitments to thiamine therapy and bradykinin normalization. (P.S. And I have to believe, at this point, that bradykinin elevation resulting from use of particular prescription drugs is itself a manifestation of an underlying dysautonomia that is potentially correctible via thiamine. That said, finding the perfect B1 protocol for oneself is no easy task. As of today, I am swearing off any thiamine source other than allithiamine (naturally occurring TTFD) after developing one paradoxical reaction after another (most respiratory) while attempting to use B1 HCl as my main thiamine source for several months already. I am also learning the hard way to resist the temptation to go high. Some of us are so wrecked by dysautonomia at this point that we react adversely even to low doses of thiamine. BUT this does NOT rule out that any one of us may find complete relief from our symptoms on prolonged LOW doses of thiamine. So remember to start low, move up very gradually and slowly, and don´t add more thiamine so long as one is experiencing improvement. Oddly, this parallels some pathways followed in classically prescribed homeopathy, homeopathy being famous for its confirmatory aggravations (paradoxical reactions).)

I had septic shock / acute pancreatitis ( following a routine procedure to unblock a bile duct going wrong) what would have been 6 years before getting Covid then LC. But generally took Thiamin as part of the B complex I took to complement poor gut absorption of hypothyroid sufferers, but only even tested B12 so no proof I was B1 deficient, but still spotting getting some normal readings of BP ( but with high HR) amongst hypertensive ones suggesting something is happening! What sort of B1 seems to be working for you hrojzen?

That is surely A LOT to have survived, and I applaud your finding your way to being able to consider B1 therapy as a solution in light of your complex, but clue-filled, history.

Regarding my BP, I am not sure, at this point, what accounts for my improvement, but in the back of my mind, I suspect I may never really have had essential hypertension, because the scenario that prompted my PCP to put and keep me on two antihypertensive drugs was a series of episodes of very high BP during doctor visits (with measurements at home often being quite normal). I do feel certain that I have dysautonomia, though, and the erratic cardiovascular behavior common to that disorder could by itself have made me look like an essential hypertension case to some doctors. In addition, my BP has mostly normalized, after ceasing BP meds, at a time when I have been taking not only B1, but also supplements like NAC and nattokinase, both of which are well known for their potential benefits on blood pressure and vascular health. Because I feel so unwell in so many ways, these days, I have not had the luxury of experimenting with one supplement at a time, because I am always desperate to get well again and simply don´t have the patience to stay sick for any longer than I need to. But even though I use multiple approaches simultaneously, once I am well again, my plan will be to remain on B1 supplementation for life while tapering off of the enzymes and other remedies that have been palliative (for symptoms, only). Then I will finally learn how much of a role B1 has played in my case. Prediction: It is going to be the missing link, for me, because every single disorder that has ever befallen me has been linked quite convincingly to B1 deficiency (subacute or acute).

Right now, I am pausing all synthetic forms of B1 (mononitrate, HCl, benfotiamine, and synthetic TTFD) and transitioning to allithiamine (naturally occurring TTFD) as my exclusive source. I do this because I have experienced symptom aggravations every time I have increased my B1 dosing using the synthetics, and I am beginning to wonder whether relying only a dietarily-derived product might work better for me. (This is not particularly scientific, but it feels right to me for now because since I got COVID, many OTC remedies I used to rely on are no longer tolerable for me, making me suspect that I am more adversely sensitive to EVERYTHING right now, and that avoiding as many synthetic products of all kinds may help me heal. Again, not terribly scientific.)

Hereś what I want to do, for a while, as my B1 protocol: Dr. Bergś B1 product once daily (contains 50 mg allithiamine and low doses of other B vitamins) together with Mg taurate, potassium bicarbonate, and choline (or citicoline) (good partners for B1 absorption and to offset B1ś tendency, in some, to deplete potassium), and, at another time of day, another dose of potassium bicarbonate (to continue to complement/offset the B1 taken earlier in the day). IN ADDITION (and this is off the beaten track), I will soon begin to apply a topical (OTC dermatological cream) allithiamine product to discrete areas of my face, in hopes that local absorption of B1 through these locations may possibly influence the behavior of the remote peripheral nerves that regulate operation of my nose and paranasal sinuses. (I derive this idea from the use of topical capsaicin by some patients who suffer from chronic obstructed nasal breathing and/or cluster headaches, the latter of which are believed to be triggered by malfunction of the same nerves as regulate the nasal cycle).

Once I am sure I can tolerate Dr. Bergś 50 mg strength of allithiamine (which is much higher than I have ever tolerated, so far, in the way of synthetic TTFD), I will try, if possible, to add minute amounts of allithiamine to my daily dose, gradually, from an allithiamine-only product (50-mg tabs) available from Ecological Farms. I will cut the tablets up, for this purpose, and will go very slowly with the upward push.

IMPORTANTLY, I am going to make peace with staying on a relatively low dose of thiamine permanently, if my pattern of experiencing frequent aggravations (aka paradoxical reactions) continues. In other words, whereas I know that B1 therapy has shown its most dramatic benefits in patients who made it up to very high doses of thiamine, I am starting to believe that some of us, especially if we have been sickly for a long while, may be able to benefit meaningfully only if we stay at a relatively low dose, but stay on some dose of thiamine permanently. I don´t recall either Dr. Lonsdale or Elliot Overton contemplating this possibility, but my gut tells me the possibility exists.