Compilation of Notes

Posted by blgilles @blgilles, Mar 23 7:23pm

Hi everyone!

I'm recovering from Long-COVID and I figured – for infotainment purposes only – that some of you might want to take a gander at what's working for me.

Note that this is not medical advice. This is a super-complex disorder and what works for me may make you way worse.

Anyway, if you're chair-bound like I was, here's some light-reading to pass the time:

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

This looks like a lot of good information—thank you!
Have you completely recovered from long Covid? Have you been able to permanently resolve your long Covid constipation (which I also have) and if so, with what specifically?


No and no. I'm still recovering. Note that I was having to be fed via my heart before starting on this though and was wheelchair bound and mostly paralyzed and hadn't had a bowel movement in 20 days. And I walked 800 feet the other day (can only walk ~100/day now as I relapsed from an overdose of vitamin A, E and D when experimenting with topical ingestion).

And I went from pooping once every 20 days to pooping once to twice a day now. Still constipated but not as bad.

This is the intense approach I'm doing based on my genetic propensities (from fed from 23andme):
I don't recommend it for you. As each person needs to analyze their genetics, their blood work, and their microbiome in order to do a targeted-supplementation for recovery.

For example Curcumin helps a ton of people, as they end up with hemochrmotosis, effectively, from iron transport dysregulation. And Curcuming blocks iron absorption in the gut. But my genetics make it so I don't absorb iron well to start with, so I'm anemic, and so Curcumin blocking absorption in the gut makes my condition really bad really fast.

That's why genetics, blood work, and poop testing need to be done together to figure out the whole picture.

When I was in the hospital the doctor literally said it was too late for me. That I needed to just say my goodbyes. Which I'm glad he did, as I left the hospital as a result and then started this 7th Hail Mary to see if I could recover.



And if I can recover (and I will recover), then I'm convinced that like 99.99% of people can recover. As I had ME/CFS for 4 years prior to COVID getting me. Recovered then, but was young. With COVID I got hit WAY harder.


Thanks for sharing all of your research information… I’ve read through most of it, and it’s very enlightening!
This is my story: I am going on 9 months of long covid now. I am 50, but when I got covid I was extremely fit and was running 3x/week and rock climbing 3x/week. I was fully vaxed and boosted when I got it. My covid symptoms were not bad, felt like a basic cold. But what it did on day one was immediately attack my knees (and it also immediately gave me chronic constipation). I was in a wheelchair by the end of the week and for about 3 months after from the severe knee pain. It was awful. About 2 months out I also came down with double plantar fasciitis, double hip pain, and tingling sensations throughout my body. About 3 months out I developed severe heart palpitations. About 4 months out torso jolts at night were added to the list as well as double shoulder pain. I could hardly function. None of the dozen or so specialists I saw even seemed to care, and they all tried to convince me that this is what happens when you get to be 50. None of them wanted to be problem solvers, and they all just wanted to throw meds at me.
Finally at the beginning of January, I saw a new rheumatologist who quickly diagnosed me with long covid and put me on a 3-week course of prednisone. It completely took away all of my pain and man what a difference it made for me! It also made me realize just how extreme my pain was, as I had learned to live with it. At the same time I was on the prednisone, I got a big food sensitivity blood work test done that tested 240 things. So I cut out all of the foods that came back moderate to high. When my prednisone course was finished, my pain started creeping back and I was having good days and bad days. So in addition to cutting out my food sensitivities, I decided last month to adopt the full anti-inflammatory diet— cutting out all sugar, gluten, dairy (except goat cheese), caffeine, and alcohol, and can now say I am doing great! My knees are finally almost back to normal, and all of my other pain is nearly gone as well. My heart palpitations aren’t nearly as bad nor last as long, my torso jolts seem to be getting better too, and my body tingling is nearly gone. I still have chronic constipation, but magnesium supplements have kept it in check. I am hopeful that I can start exercising again soon. I have found I need to be extremely strict about following my anti-inflammatory diet. For example, one day I decided to have a piece of sourdough bread, I paid the price with increased pain for 2 days. Before Covid, I could eat whatever I wanted, so it’s been a tough adjustment, especially cutting out all refined sugar because it’s added to almost EVERYTHING! But I REALLY think this diet is keeping the pain and other symptoms away. I’ve also added more protein to my diet. Now I have mostly good days with occasional bad days. Before, ALL of my days were bad, it was just a matter of how bad they were going to be. I believe all of my Covid symptoms have/are being caused by widespread inflammation because every test, labwork, imaging, EKG, etc. has revealed nothing. Even my knees—they were visibly inflamed and the pain was so bad I couldn’t go anywhere without a wheelchair, but all of the specialists and imaging could find nothing actually wrong with them—they weren’t technically “injured”. So I’m thinking that this should also mean that it’s possible to get my body back to 100%, and that is my goal. Also of note, months of physical therapy (including maofacial release) only made my pain worse. Those things always fixed me in the past, but now it just makes things angrier. Also, anti-inflammatories like Aleve and Advil do nothing for my pain since getting Covid and may even make it worse. I’ve found that gentle stretching everyday (about 40 minutes of it) has helped much more.
Hang in there everyone! I hope my story and what is working for me helps others.


Please if You happen to come back pleeeze, will tell me/us what brand or company did U go to get your food sensitivity test done at & do U know how much it costs? Please I am desperate & fighting for my life right now & am in dire shape, bedfast now & in pain beyond my mind’s ability to hardly stand it. Please help anyone, does anyone know where I can get effective food sensitivity testing at an affordable cost?


I’m so sorry you are suffering so much, I’ve been there! Try to hang in there.

My naturopath is the one who ordered the food sensitivity test for me. It was a blood test, and I had it done at the lab at the clinic, and they mailed it off to the company that runs the tests. It was not covered by my insurance, and cost $400. The testing company was U.S. BioTek Laboratories (I did the food sensitivity panel that tests 240 food substances).

About a month after my lengthy post above, the functional medicine specialist at my naturopath clinic ordered mold toxin labwork for me, as I was beginning to suspect that maybe my multiple health problems were actually from mold poisoning. (We had discovered that our attic was full of mold from a disconnected vent.) That test also cost $400 and was run through MyMycolab. It came back with high positivity for a variety of toxic molds in my system.

Also, about the same time, I tested positive for hypothyroidism and Hashimoto’s Thyroiditis.

I have now come to the conclusion that my main problem was/is mold poisoning, and then Covid (along with menopause) tipped my system over the edge. I believe the mold and/or covid also caused my thyroid issues. I have learned that 25% of the population carries a gene that literally prevents their body from naturally ridding their body of mold toxins. I don’t know for sure that I’m among the 25%, but it seems likely since it would also explain why the rest of my family has not suffered the same effects.

It was very expensive to remediate the mold from our attic, but I have continued to get better since. I still have a lot of hip pain though, and my knees still aren’t completely healed, but I am no where near the terrible and suicidal shape I was in a year ago. I also still have tingling sensations and still get the torso jolts at night. I am currently taking “binder” supplements to try to rid the remaining mold from my system (not sure if they’re working yet). The alternative is a prescription anti-mold medication, but I’m trying the more natural route first.

If you haven’t already, I would highly recommend you see a rheumatologist as well as a naturopath. You may also consider if you’re maybe being exposed to toxic mold.


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