Treating Long Covid as Inflamation Based

I firmly believe that it is inflammation based. In the 3 years I have had Long COVID, I have gone through a myriad of symptoms that all look like other autoimmune disorders. Interstitial Cystitis (now I only drink water), RA, tinnitus, GI issues, head pain, joint pain, brain fog, chronic fatigue and post-exertion malaise. I was tested for most all the other autoimmune disorders, none of which came back positive except RA in the beginning. The next labs I got did not show RA. When I wake up feeling "poisoned" I know that it is inflammation of my whole body. I have said it before, that the word poisoned is the only way I know to describe malaise. So, there are NSAIDS (like Ibuprofen), steroids and other anti-inflammatory meds. Initially, the doctor wanted to put me on Hydroxychloriquine (which is used to treat RA). I read about it and decided against it. I tried steroids and they made me feel like I was on cocaine. I take Vyvanse (for ADHD/stimulant), Gabapentin 300 mg 3x's a day, 50,000 IU's of Vitamin D once a week, drink a big glass of water with EMERGEN-C in the morning with my meds and will take 800 mg Ibuprofen if I need it for really bad malaise or pain. I always have fatigue although the Vyvanse helps me function for some of the day. I also take 30 mg of Cymbalta for depression and pain. I went down a depression and hopeless hole so I agreed to take the Cymbalta. I have taken many anti-depressants over the years and did not want to take one, but I knew that waking up feeling hopeless was too much and I needed a nudge out of that hole. I also give myself a Vitamin B12 shot once a month. Anyway, long story short, I believe inflammation is the root of most symptoms. I wish they could figure out why and how to stop this.

@uget1shot Highly recommend you spend about a half day watching YouTube interviews of Dr. Patterson. Watch out for the snake oil salesman that will come up when you search. There are thankfully small groups of medical and journalism professionals worldwide with working theories, the other one being triple therapy.

Thank you for the information. I have heard his name a time or two in this, now, 4 year journey. I have watched a couple of his videos. What I cannot seem to find (and I'm crap at online searches) is the general cost to follow his protocol (made mostly of supplements, if I remember correctly, but my memory is also crap these days...Ugh! If you can provide a ball park amount, I would be grateful (I know the cost will vary based on the brand of supplements that are used, so I'm just looking for a rough estimate. Thank you so much for sharing your experience and I truly hope you continue to improve every day!

Thanks for the info. Best of luck.

I am thinking of taking the blood tests to see if I qualify for Dr. Patterson's protocol. His web site is https://www.covidlonghaulers.com/north-america/home

@bmekdeci Best wishes in your fight to regain your health.

@debbie75 Dr. Patterson and his team are agnostic on supplements. His treatment regimen involves a repurposed AIDS drug, Maravoric, Avorstatin, and some pre meal prescriptions to help a low histamine diet. Also there are some behavior modifications to limit inflammatory activities such as exercise to the point of sweating and for me no SCUBA Diving, because compression and decompression is an inflammatory activity. He is all about curing vascular inflammation. As far as cost the first Cytokine panel was about $1,000 and I intend to turn that into insurance, but haven't done that yet. My second blood panel was about $400. I am on Medicare and I have spent enough money on prescriptions this year that my prescription cost is now $0. There are virtual appointments at about $250 and I have had 2 of those so far. Again, Ive not turned many of the charges in, but even if not covered I don't care, I want my life back and I will skip the next vacation, car, whatever in lieu of paying for his regimen. My prescription deductible is about $3,000 so an estimate of the drugs I am taking is about that. Very expensive, but again, will skip the next whatever it takes to get better. Best wishes on your journey.

Is anyone showing signs of high MCV an MCH in their blood tests? I am trying to connect the dots (as we all are).

Thanks - Good suggestion. I do remember watching some videos of him and other docs early in the pandemic. Would be good to go back and review them again now that I know a lot more. I've learned a lot in these 5 years.

I was just able to finish a Pulmonary Function Test (took two tries and a very patient technician) and came back with low DCLO . A low DLCO (diffusing capacity of the lungs for carbon monoxide) can be associated with inflammation, particularly in conditions affecting the pulmonary vasculature or the alveoli. Inflammation can impair the lungs' ability to transfer oxygen to the bloodstream, leading to a reduced DLCO. Since Long COVID can significantly impact the pulmonary vasculature, I believe this is why I am so tired and can become short of breath. Now back to the doctor to see if there is anything I can do to treat it!