Long Covid relapse advice

I forgot to mention that my pneumonia has almost completely cleared months ago. Drs still hear a bit of repair that needs to fix itself but all tests show that it’s cleared and that I just need to naturally build up my lungs which I feel that I have. Now if I try to do a few light stretches I sweat immediately and my body starts to shake with weakness like I can’t hold myself up.

It’s very frustrating when doctors give conflicting directions.
Post-exertional malaise, Chronic Fatigue Syndrome (CFS) and Exercise Intolerance are very real.

I showed my neurologist some of my research (below) and she referred to Allergy and Immunology, who is now referring me to a Immunology Specialist. I started getting a gut feeling that my root cause was "cell level". Also, I learned Immunology does a different set of Lab Blood Work.

I feel the following are related to what you are going through -

Jarred Younger PhD – University of Alabama at Birmingham
070 - Why ME/CFS "fatigue" is not normal fatigue

IMPORTANT - I share this with my doctors to help them understand what I’m going through.
UT Health Austin Michael Brode, MD Dec 20, 2023
Long COVID Treatment Explained: A Comprehensive Patient Guide

I recently found Polybio.
“The Long COVID Research Consortium has established a comprehensive research program on Long COVID disease mechanisms, with a focus on viral reservoir. The program includes scientists and clinicians from institutions including Harvard Medical School, University of California San Francisco, the J. Craig Venter Institute, Johns Hopkins, University of Pennsylvania, the Icahn School of Medicine at Mount Sinai, Cardiff University and Yale University.”

They have a "consortium-project-explorer" (Screenshot below c-p-e 1), click on body part and it shows links where you can click to see full study.
https://polybio.org/consortium-project-explorer/
Note: First time - walks thru the Intro to Polybio and "how to use" explorer, later you can Skip Intro

It's been a journey, Best wishes on your journey
🍀

Thank you SO much for all that you have shared with me. I feel like I’m on an island all alone where no one seems to understand what I’m feeling and what to recommend. At most I feel like people think I am ‘faking’ this to get out of work or to sleep all day. I can’t tell you how alone you feel when no one seems to understand especially when it comes to the medical field where I live. I kept going to a ‘Dr’ and they kept sending me home saying if I didn’t have any pain then why am I coming to see them? I since have given up on seeing a Dr and only now have a nurse practitioner trying to help my situation. I basically am told to go home and rest and take supplements and vitamins. I struggled for 7-8 months in bed because rest never improved anything. Thank you for all that you’ve sent me, I appreciate anything I can lesrn for myself.

Sorry you're going through this. When my covid was at it's worst with respiratory issues, I believe that fresh pineapple saved my life. It broke down the congestion in my lungs like no medicine ever has. You could try that or supplements of bromelain.

Hi @shawski As @djv33 and @fourleaf so perfectly shared helpful info. May I also suggest the slow and steady approach my providers shared that may be really needed to maintain moving forward and prevent backsliding crashes. This to me hardest part as I learned even watching a short video could be too much at times depending on time of day, body symptoms, how long up on feet like just walking to bathroom….. The analogy one 1 lb weight one rep on a day, yes only one day in week, week one. If no symptoms noticeable difference that week, increase to 2 reps on week 2. Same thing all else you do giving yourself grace and healing patience. And food reactions can be critical for creating inflammation throughout body so may find extremely helpful to keep food symptom reaction diary to pinpoint your individual triggers🤞. I have to buy frozen foods now, which are also convenient already cut to save strength…, due to my new histamine reactions. The pineapple definitely helped me too and apples are great for quercetin and easy to just grab yet again just biting chewing can be triggering to
watch for🙃Quickest healing journey to you!🌈

I am 71 and got covid 3/23 during a bike tour; the long covid mostly lasted 9 mo with spiking blood pressure up to 195/97 and PEM (post exertion malaise). My cardiologist put me on minimal exercise (which for me is an hour a day with lots of rest breaks). The fatigue never quite went away, but I control it with exercise in batches, walk 2 miles and take a nap or bike in 5 mi increments. I can't build up from that. Resistance training with weights doesn't cause PEM in me. It is important to get exercise, rest, avoid/control stress, stay hydrated, and eat healthy. Other than PEM, I had no other LC symptoms for 2 years, but I had to hike up a steep hill on a field trip and had high BP spikes the next day. Likely treiggered by the aerobic exercise, but it was a one off.

@shawski the reddit long covid group has lots of tools and information.

@fourleaf

maybe start a regimin of nac.one pill above the recommended dose...but i'd take just the two(1200 mg each) to see how you feel.If no reactions,go up too 3.kind of ease into it so you can notice any side effects.You sound like you have had a healthy lifestyle...this will help.

@shawski you know you're sick.That's all that matters.People that have dodged the bullet so far with this thing can't possibly understand.had some of the same reactions from my boss.finally stopped trying to explain myself and how i was feeling.you have to be good to yourself.if ya gotta leave work...if you just can't manage things,you go home.I'm a checker,so handling transactions is critical to my job.I can't get these wrong.I had to leave many times..sometimes right after getting to work.It was too much.A few times I went there and saw one of my other front end managers outside the store.I told him I can't do this right now...I need to go home...Everything worked out fine.Especially when I said to my main supervisor.."DO I LOOK WELL?"lol.She couldn't deny that.Lost 30 lbs in the first 6 months of my covid.Still only 141 steady...and I do eat(not like i used to) LOL.What a world...