I’ve mentioned that I have Long Covid symptoms and have stopped Rapa and Metformin as I navigate severe fatigue, brain fog, post exercise fatigue along some other symptoms. My VO2 Max has dropped from 43 to 36 in 120 days while continuing to exercise.
I took Paxlovid off-label and it correlated with a reduction in symptoms. My recent blood test came back with my C Reactive Protein at 18.1 mg/L, which is quite high and usually signals inflammation / infection - and supports the fatigue symptoms. I’ve supplemented with B-12, D and Iron as these are usually low with Long Covid and my blood test had all of these levels at the lowest level on the “normal” range. Ferritin tested at the low end of the range as well.
Any advice on supplements or a treatment protocol to reduce the inflammation or infection? Would restarting the Rapa / Metformin help?
My GP thinks the C Reactive protein is leftover from Covid - even though my infection was the first week in January. If not from that, he thinks I had an asymptomatic case more recently.
I’m not buying that at all - I do serial testing with rapid-tests for Covid at work - 2X weekly.
Any perspective appreciated - it’s amazing how little support there is for treating Long Covid.
I had Covid with pretty bad symptoms in Jan 22 and my C Reactive Protein was higher in my March 22 labs than the normal. But when I say “hight” it was 3.27 as opposed to 1.38 (pre covid) and currently. So what was your CRP pre covid?
I don’t have a measurement from before - but - I pushed my Doctor for the test as so many other people with the LC symptoms have high CRP levels so it validates there continues to be some infection / inflammation related to Long Covid.
From what I understand the inflammation is due to the body thinking it’s still fighting an infection and doesn’t know how to reset itself. So treating the symptom can help, but at some point the immune system?? needs to reset.
I’m reminded of the Cytokinic storm that was killing so many people pre-vaccine by killing cells in the lungs due the respiratory focus of Alpha.
In the presence of such severe symptoms, I’d consider asking your doctor about trying a course of prednisone. NOT that you want to be on prednisone long term if at all possible, but even a short trial of prednisone such as a 2 or 3 week taper would be a test to see if this is an auto-immune condition. If all your symptoms go away and stay away until you taper off, then you could potentially explore other anti-inflammatory meds with less global immunosuppression (and less long term side effects) than prednisone. A longer term course of low dose prednisone such as what is used for polymyalgia rheumatica could also be a potential option.
Granted this is not ideal compared to dietary changes and supplements if they work, but if COVID is a true autoimmune condition then it may well require pharmacological intervention.
“Using a log-linear classification model, we defined an optimal set of analytes that had the strongest association with LC among the 28 analytes measured. Combinations of the inflammatory mediators IFN-β, PTX3, IFN-γ, IFN-λ2/3 and IL-6 associated with LC with 78.5–81.6% accuracy.”
The list of anti-inflammatory things to explore (which would work best against the markers above)
Yeah, there ya go! I’m all about supplements and nutritional interventions for chronic low-grade inflammation, but in the face of an autoimmune condition with significant systemic inflammation, it usually requires meds. A steroid taper is cheap, readily available and would be unlikely to cause any long-term side effects, and your PCP is likely to be willing to give it a try. Just please be sure to mask up with a quality N95 (or at least KN95/KF94) so you don’t catch one of the new variants while you’re immunosuppressed on prednisone
Chris Masterjohn, as usual, has a different take from everybody else and I think you can read it for free! The only downside is that it is a long read of complicated stuff for somebody like me. The upside is that you only have to take some arginine:
Yeah, if you click his link to the paper about balancing vitamin C with glutathione, it spells out N acetyl cysteine. I don’t really know about his theory on that since the paper is using people with parkinsons. I don’t have parkinson’s so should I be careful to balance mine too? Maybe he will say when he finishes the thing.
Update to my LC or PASC situation. I took the advice from a well-respected virologist who knew I had only taken the Pfizer vaccines to take the Moderna in mid-June. I did, and I had 45 amazing days with almost 90% recovery. I had an active vacation with my family, did 25K step days in Switzerland, Turkey and London over 2 weeks. That said, my VO2 Max continued to drop (from 37 - 33, down from 45.5 6 months earlier) even thought I kept up the exercise. Then, a pattern of exercise (hiking, biking or tennis) led to multiple day crashes - unable to work a full day in August. After 3-4 days of inactivity, I’d feel better, get arrogant and then exercise, then crash - but I started to pace myself and create more distance between crashes. Felt maybe 80% of my old self 80% of the time - very happy with that considering.
So, the bivalent comes out and I’m 120 days out from my last booster and remember how great I felt after the June booster. Bad idea. Within 10 days, I’m back to the worst of my symptoms and now 60 days later, I’m minimally better. Maybe a walk 1-2 times a week, that’s it, but at least I can work most of a full day. (10 people in my company of 350 have active LC symptoms)
So my LC Dr. - who like most LC Dr’s focuses on treating symptoms - wants me to try Low Dose Naltrexone which I assume is to impact the issues from inflammation and immune response. As I research LDN, it seems to have some properties that are exactly opposite to Rapamyacin and has me wondering in the LDN could do more damage than good? For example, you would never take LDN if you had an organ transplant as you would increase the changes of rejection - something Rapa does the opposite.
Any thoughts on LDN for treatment of inflammation and immune disregulation issues? Any longer-term negative risks anyone is aware of?
A lot of questions, but not a lot of answers. So many people lost in LC / PASC.
I would start by making sure your 25 OHD (vitamin d) levels are at the high end. I use both cholecalciferol and 25OHD to do this. I get dedrogyl for that. Then i wiuld alsk aim to take some Melatonin to fit with the circadian cycle say ideally between 4am and 7am, but before normal wake time.