Post-COVID Recovery is a Paradox

YEP! Jesus, Prayer, Supplements, Exercise, YadaYadaYada... 'JESUS!' EVERYBODY GOT THEIR CURE and family just tells me, "Well, you LOOK marvelous, Mitch!" I've got a counter full of supplements, have people who pray for me (and yeah, even I have prayed for myself), I only get exercise if I take a load of AMPHETAMINES (Adderall Rx for my ADD/ADHD-so legit), have a truckload of FISH OIL due Monday morning (because ER doc actually mentioned it for inflammation so... using up the last of my supply now but 'no change yet), and B-Complex, D3, ZINK, Magnesium, Potassium, Melatonin... 'LOL' They want too cut into me and take a BIOPSY of my lymph nodes. Sounds very, very dumb, to me. WON'T / CAN'T order 'IL-6 (Interleukin 6) Test because 'not in their swimlane' - but it seems that's one of those tests that's going to give me the 'out-of-range' results I know I'm looking for - and for which 'IMMUNOLOGISTS and RHEUMATOLOGISTS' use for 'Followup ACTION' - and I know (because investigation/research) there are actually DRUGS PRESCRIBED for these things, by THEM. That's all I want - test me - try some drugs - see what happens - without some idiot cutting into me because, 'WE DON'T HAVE IMMUNOLOGISTS TO DO THE LOGICAL STUFF'. GAHHHHHHHHHHHH. They don't HEAR me - because NOT A DOCTOR and they seem determined to ensure I KNOW THEY ARE THE GATEKEEPERS. So. Scenarios to get to immunology department, somewhere, somehow... I'm at the 'LOL' point because all I get is 'BLOOD PRESSURE and COLONOSCOPY or COLOGUARD at every. Damned. Appointment. I haven't fired him yet because he's my own entry to the local system beside ER and I might need him for strep throat or a broken bone, sometime. 😉 Cheers.

I need help- please. I got Covid3 weeks ago and it seemed mild but the fatigue is awful. Then my PC and Endocrinologist ordered a bunch of labs and the results are mainly red with kidney problems. I see my endocrinologist in 2 weeks. When I was diagnosed, my PC called covid a bad cold with some severe side effects. I am scared as no one seems to know how to handle this ie. am I still contagious. My PC said I could test positive for awhile but if I have no symptoms, I am not contagious. But she said the symptoms could last a long time. You all seem to be battling this and know more than the docs. Any help or suggestions would be great.
Thank you.

I sense you frustration and empathize with your health problems. My post acute Covid 19 issues problems were cognitive memory issues, joint pain swelling/ extreme fatigue and insomnia (which exacerbates the fatugue). I showed my primary doctor research from Mayo and Stanford and he agreed to call in a prescription to the Mayo Clinic pharmacy for low dose naltrexone ((LDN) 4.5 mg) with NAC (supplements). It has helped enormously with energy levels, sleep and cognitive issues within 2 weeks. Find a PC who will be responsive, hear you and be amenable to accepting new research from reputable hospitals. Most professionals feel medicine is collaborative effort between patient and doctor, so being overly insisting about which tests you want performed may not be the optimal approach. You mention Cytokines which are mediators of inflammation. That and microclots appear to be the underlying mechanism of complex pathology of long Covid. Low dose naltrexone . LDN has an anti inflammatory effect. Measuring cytokines is not useful in my view because it’s too nonspecific and even if they are elevated, LDN is the only medication that works. Anti-inflammatory don’t . For microclots baby aspirin may help.

I'm trying to assemble relevant scientific articles from respected sources as support for asking our primary physician for a prescription for LDN. Cognitive issues [memory and word finding], balance, and fatigue are my husband's primary issues.
I'd like your references to research at Mayo and Stanford. In exchange I'd call your attention to an article in Scientific American which I have missed anyone already posting about. It does not specifically mention LDN but it presented a comprehensive look at symptoms and proposed mechanisms for Long Covid.
https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/

Please post links to the research you showed your doctor.

I am not the poster requested to post but find this source has much specific to the LDN, the Research and HOW and WHO to obtain from : LDNScience.org/research

Hello, I also found this article while researching long covid symptoms. It made perfect sense to me, but I never shared with my doctor as I don’t believe it is research based but anecdotal in nature. Lots of info but no scientific data to support it’s suppositions. The NIH has performed some short term data driven research articles but subjects were low in number. There are probably thousands and thousands of people with long covid so studies with 12 subjects us just lazy research! Long covid research in baby stages, so much more research needed

Read - and see it is linked to the study I had also mentioned of Fred Hutchinson in Seattle and mentioning IL-6 (Interleukin 6) 'Markers' for testing beyond the 'usual blood tests' we all get all the time. AND - after reading this one posted from Scientific American - man... it sounds soooo right and after many months of research and getting to know and understand my own 'Holistic Symtoms' specifically realizing after months that not just my 'neck lymph nodes' but also my groin and knee region lymph nodes were 'inflaming' in a continuous 'cycle' on a 'sine wave' that I THOUGHT was ONLY under my jaw ( took me months to figure out the 'knee pain when kneeling' and 'discomfort when sitting due testicles being displace/pushed out') was due 'lymphatic system' which = 'Immune System' = which actually also extends into brain which of course I couldn't simply observe like, 'the inflammation under my jaw', but nonetheless seems to all be related. Head-to-Toe lymphatic system inflammation. The article pretty much sums up 'all I've been suspecting' in terms beyond my capacity to communicate and education to understand - yet - kind of 'intuit' to a large extent after 'synthesizing all of it' over time with research and getting to better understand my body/symptoms/experimentation and interpolating/deducing some of the invisible (e.g., brainfog/lymphnode linkage). Apology for the long-winded run-on... but details and specifics matter so much and particularly applicable in this highly complex issue and environment. This article captures best 'what I believe applies to me'.

Ugh!!! Didn’t we all see this coming? That medical care is too difficult to access outside an urban area?? I feel so bad for those of you who have said that the nearest specialist is hours away, if even that! Thing is, I’m beat beat beat every day after doing mild things— this is after weeks of really not moving much. This illness is not something people can “work around” so we need answers! And access! And help. I’m so sorry. Not much good, but I want you to know I hear you….

One can also find peer-reviewed papers on "long covid" or other searches in ResearchGate. The audience for these papers is generally doctors and medical researchers. Most of these are published in medical journals and posted by authors. I'm also a doctor (not of medicine) and post on this site, for which you will need logon access.