Post COVID for 21 months now and still declining

Welcome @infosecdad. I’m at a loss. It sounds like your doing everything right and getting the good care at a specialty COVID clinic. First, I wanted you to know that I read your story. Second, I’d like to bring a few fellow long haulers into this discussion in the hopes that they can share some of the things that help them, like @welchllb @ldropps @tiredmommy @mimi24 @bunzman @jennifergillan03 and others.

Will you return to work on site or remotely?

I am so sorry for all the pain and stress you are going through. I haven’t been officially diagnosed as long hauler as my tests come back normal and my oxygen never dipped low similar to your story. However, I still have on and off muscle pain in legs and really not sure what’s causing it. I am finding some relief with a low histamine diet. No gluten or dairy or alcohol. Interestingly, I tried goat milk last week and after a day of drinking it my leg pain came back. Milk can trigger inflammation so I’m thinking I may just permanently give it up. My seven year old daughter has been having stomach issues waking up in middle of the night since she got Covid and when we went to pediatrician the dr suggested eliminating milk. We have done that for a few days and her pains are away. Covid is so novel that there is so much drs don’t know. I’m finding that I’m getting more helpful guidance from other folks with post acute symptoms. I do drink a ton of ginger tea and chamomile and peppermint. I also drink lots of water. I try to cook very plain foods and eat lots of greens. They seem to help. I haven’t tried this but many long haulers suggest doing H1 and H2 blockers like Allegra/Claritin/Benadryl and Pepcid AC. That is supposed to help with inflammation and histamine reduction. I also started wearing compression socks and leggings. That’s helping me, too.

It’s hard to manage and stay positive with chronic pain but I’m finding this moderated group helpful for me.

Also I started a prenatal multivitamin that has high vitamin b/folic acid/etc and probiotics and doing magnesium supplement. They seem to help.

Colleen,
Thanks for the reply.
When I go back to teaching in a month it's in person; I have four classes that I'm teaching in the fall.
Thankfully the classrooms aren't too far from my office, but I have been teaching sitting down for the last 3 semesters as I can't stand for a full class.

I'm still stuck on not knowing whether this is autoimmune issues, COVID still running rampant through my system, or something else entirely.
On one hand, I suspect micro-clotting as I have a number of symptoms that align; but none of the blood tests have indicated that's it.
MRI has been "fine", ECG was "fine", CT was "fine", whatever this is, is not showing up on the standard testing regiments.

Thank you for the reply and experiences.
I don't consume milk or alcohol, but some gluten. I've gone through a lot of turmeric, magnesium, zinc, and am probably better for it; but symptoms have not improved. I've tried the H1/H2 blockers for a couple months without noticeable benefit. When I have flare-ups, it's usually related to stress and any physical activity. Much of any stress manifests itself physically very quickly. I'm stuck in a cycle where if I do absolutely nothing physically, I'll level off and not get worse. However, my mental state declines and I have to start doing things again to try to stave off depression. So, I'm basically bouncing between the physical break down or mental breakdown :-/

@infosecdad I read your post and wanted to join the conversation. I am in month 10 of longhaul Covid and your description of your struggles resonates deeply. I had applied to both Auburn and Vanderbilt post covid clinics and didn't get into either. Then I applied and was approved to Mayo Clinic Post Covid Care Clinic. I went to Mayo in Rochestee in early June for a few days of extensive tests and finally received confirmation that there were no underlying health issues like autoimmune diseases, or remaining virus. They tested me for pulmonary problems, Endocrine issues, did a sleep test, echocardiagram, CT scan, and more. My doctor at Mayo explained Central Censitization Syndrome to me and assessed the Post Covid Clinic was the right fit for me. Learning about CSS and focuaing on the approaches to help create new neuropathways changed everything for me. I have a long road ahead, but I am entering week 6 of 12 of the Mayo Clinic Post Covid program and continue feeling more hopeful. Also, I wanted to add that gluten causes me to have pretty intense setbacks; specifically it triggers deep fatigue and brain fog. The Mayo Clinic recommended the Mediterranean diet for CSS and I find it helps me. I wish you the best in finding some relief and healing.

@infosecdad Hello. I'm sorry you are struggling so. My only contribution is to suggest daily exercises and stretches. They are the only thing that's really helped me. I stopped them once I was feeling better and I relapsed. I've attached what I do everyday.

Hello! I’m just throwing some probably more than obvious questions but I’m dealing with long Covid just not in the ways you are and I’m so very sorry. My heart breaks for you because it’s like one day you are fine and going about life then the next everything has changed.
I started drinking two big bottles of Alkaline water a day with a Ph of 9.5 and try to keep everything I eat a Ph of 5 or higher. I also started acupuncture to reset the Vages Nerve, that nerve is so powerful and controls pretty much everytbing from head to the stomach and it’s vital. I’m assuming your blood test are all normal? And have they checked for high inflammation markers that would suggest an autoimmune? I’m convinced that the effect this virus has on the nervous system and thr Vages Nerve it can completely cause an autoimmune disorder.
Thinking and praying for you!

Amy

Hi. Each of us are unique re: post CV syndrome. I share your scenario in many ways. This formulation brought me prompt+signif improvement in physical function, cognition +mental health outlook, and pain reduction.
Taurine 1000mg/1x AM
D3 5K IU AM +PM (gel cap)
B12 sublingual 5k iu AM
CoQ10 100 mgs AM
B complex AM
Folate 400 my/AM
Zinc 50 my AM
Magnesium 400 my AM
PhosphatidylCholine 840 my gelcap Am
Calcium w K chew AM
Organic mushroom supplement (10 variety supp)
Vit C 250 mg AM +PM
5HTP 100 mg PM
Mega probiotic Garden of Life w food AM +
Nutrition Essential on empty stomach bedtime
Cucurim (active) daily
Ibuprofen 600 my q 12 hrs
High grade XVirgin organic olive oil in food. At least 2 oz/Day for brain.
Ginger brew Xstrong (Reeds) or ginger xtract
I also drink decaf coffee w a tsp of instant caffeine coffee mixed w whey protein isolate (24 Gms protein) early afternoon to lift my energy.
I take all above AM vits w light meal (eggs etc) or low carb protein drink.
This changed my level of functioning dramatically.
I created this based on my own research.
I already eat an organic healthy whole food diet which includes 4 oz of clean fish a day. And I believe in a fermented food such as Kombucha a day as possible.
I drink 24 ozs of black +green combo tea/Day anyway.
I'm going to re introduce L theanine for sleep.
I had a positive effect from a course of steroids but it waned when over. This nutritional support recipe boosted me from total disability to an improvement I never thought I'd ever see again. I was unable to adequately care for myself it was that bad. I returned to work for 4hr shift, 2-3 days/week (desk role now) 5 weeks ago after just 6 weeks on this protocol. I'm gaining strength over time +my brain can read +comprehend, I focus +can concentrate. My memory +cognition are SO much better. I can make my meals, +do enough basics to be OK for now.
Keep your faith that this will not be forever for you. Hope is essential for recovery. And it's likely.
I trust WebMD for supplement info.
However I had the advantage of a related background to guide me in my selection. This worked for me.
I encourage you to read abt neurotransmitters, neuron recovery news, things 'neuroscience.' Many are clear for everyone.
Hopes +prayers for you.

I’m looking for some help, some reassurance, some support anything really. My wife is 51, she has many underlining health issues: diabetes, epilepsy, and the most severe rheumatoid arthritis. She got covid in April of 2022. It was mild cough for a day, tired for 2-3 days done. About 3 weeks after she developed ringing in her ear then what she describes as white noise in her ear, and dizziness. Then she had her first episode of complete confusion, blacking out and not remembering several hours of time. She will talk not like herself, her eyes are almost always closed, she acts as though she has dementia, she agrees to most questions asked even if not true, and states she is tired. After a couple trips to the ER by ambulance, CT scan, lots of blood tests, EEG (while in an episode) and a MRA of her brain, there have been no findings. We can only assume she is a long hauler. I’m looking for anyone else experienced any of this. She will sleep all day long and still be tired. Her timeline of episodes is as follows: she had one on a Monday and then on Wednesday of the same week. The next week it was on Tuesday. Then she went 9 days and another on the following Thursday. Then she went 10 days and had another the following Monday then again the next Monday and Tuesday that brings us to present day. Has anyone else had a family member who experience this? Is there something we can do to help her? The neurologist wants her to see a psychiatrist thinks she’s disassociating because he has no other explanation. She has been through a ton in her life she is not disassociating. Help support please. She has always been an independent, hard working, self sufficient woman. We live in a small town in Maine.