1. < Post-COVID Recovery & COVID-19

Post COVID for 21 months now and still declining

Posted by infosecdad @infosecdad, Jul 25, 2022

Hello,
I'm a mid-40s male in good health (or was). I contracted COVID in Oct 2020 and never recovered from it. I had what they called a "mild" case where my blood oxygen level didn't drop below 90% and I wasn't hospitalized. I had a fever for about two weeks, migraines, and numerous varying symptoms over that period of isolation. Once I finally got out of isolation, I still encountered heavy fatigue, muscle weakness, and heavy inflammation. I teach computer science and cybersecurity at a small university and consult on the side. I was missing 2-3 days of class a week due to an inability to function well enough to lecture. I was sent to the ER twice, once due to possible stroke and again for a kidney stone (never had one before in my life).

I was vaccinated in the Spring of 2021 because the stories of it improving Long COVID suffering, it didn't. A couple months later in June, I started to relapse badly, and have been slowly declining since. I had to withdraw from my doctorate program because I was unable to keep up with the work as I struggle to keep a thought for more than a couple minutes. This is also impacting lesson planning, lecturing, consulting, etc.

Currently, I am struggling to move very far physically. I try to walk for 20 min a couple times a week, but it takes 2-3 days to recover from it. My body is constantly in pain from the inflammation (6 or 7 on a scale of 1-10), with spikes from time to time. I struggle to walk, type, or perform many activities. High temperatures amplify the pain and weakness, so this summer has been far from relaxing. I've had to use a cane to walk, but my grip and arm strength is not good, so it's not much of a benefit. I'm used to working 8-10hrs a day and right now am lucky to get 2-4hrs in a day. I'm the sole source of income for my family so I can't just stop and rest until better.

I've been visiting the Vanderbilt Adult Post-Acute COVID clinic for over a year now. We've tried many different treatments, mostly wholistic focused, but with minimal success. All the treatments that have worked for other patients in the program have not shown noticeable improvements for me. I'm running out of ideas for things to try. I have to resume teaching in a month and I'm not sure how I'm going to survive the semester in my current state.

I'm on a base set of a good pro-biotic, Vit B complex, Vit C, Vit D, baby aspirin, one or two other supplements. I've tried PEA supplements, NMN supplements, Cortisol managers, and others. We tried a common steroid to try and alleviate some of the pain from inflammation, but it didn't prove any benefit, only major side effects.

Any ideas of things that may help are welcome.

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

dsanders083 | @dsanders083 | Dec 18, 2023

I dont have any answers for you, but can relate. I am 40, prior to Covid I was healthy. Now my quality of life has deteriorated to only managing the day to day. Migraines, pain in joints and lower back, loss of coordination and blindness in the right eye occasionally with the migraines. I basically just focus on the day to day and continue to look for something for alleviation. I am seeing specialist at the Cleveland Clinic, and " post covid-autonomia" is the best they can come up with.
I started on a recumbent bike to help with coordinating my body and getting used to the sensations, basically re programming the brain to get used to everything. I can only say that I can relate, and youre not alone. I dont know if that is comforting or discouraging...

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pat814 | @pat814 | Dec 19, 2023

It was recommended thst I take 2 capsules of NAC daily along with 2 Natokinase /Seraptase on an empty stomach. I take it every morning when I wake up with body aches. After 1/2 hour or less, I am feeling relief from the body aches. I was diagnosed with rheumatoid arthritis post covid 19.

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kitty2 | @kitty2 | Dec 20, 2023
In reply to @cavera "@infosecdad I read your post and wanted to join the conversation. I am in month 10..." + (show)
@cavera

@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.

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Hi..what Doctor are you seeing at Mayo for the long Covid. I just heard that Dr. Van left Mayo in November when I called to get an appointment with him. Did someone take over his program? Sincerely, Kitty2

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lkirnbauer | @lkirnbauer | Dec 20, 2023

I am so sorry that you’re suffering so terribly. I contracted Covid in December of 2022 and still have no taste or smell. I have had brain MRI’s, ENT visits and nothing has been found thankfully, but still no taste/smell. I also was diagnosed in November of 2022 with Hashimoto’s/Hypothyroidism and I now am taking Synthroid and Cytomel to control this. I am wondering, and please know that I am not a doctor, have you ever had your thyroid levels checked? It could be the reason you are so tired all the time. I asked my doctor to do a TSH blood test on me and he thought I was just trying to get on medication to loose weight, but to his surprise, my bloodwork was so off and that was the reason I was gaining weight and sleepy all the time. It’s just a thought and it’s a simple blood test. What you need to ask your doctor to test are your TSH, T3 Free, T4 Free and your Thyroid Antibodies. Also, since you’re so tired all the time, maybe ask to have your adrenal glands checked. I do hope you get some relief soon! Happy Holidays!

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123456789101112131415 | @123456789101112131415 | Jan 6 9:35pm

I am sorry, I have no suggestions, but I want you to know you’re definitely not alone

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joanma | @joanma | Jan 7 12:57pm

My strategies: Pacing, naps, meditation, yoga stretching, nutrition density (smoothies and 12-14 different fruits or veg a day), no sugar or alcohol, Mediterranean diet, and supplements (B complex, quercetin, Vit D, probiotic, Omega 3, magnesium, CoQ 10, & alpha lipoic acid). I can use a computer again but use sun glasses. Same for big screen TVs. I prioritize! God bless.

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chrisself | @chrisself | Jan 8 9:01am

I’ve tried it all over the past 2.5 years. I had a ‘mild’ case of Covid that showed no normal signs so I was misdiagnosed for 16 months. This caused the spike proteins to most likely duplicate & begin to cause havoc throughout my body. I had unexplained weight gain, my GI tract developed gastroparesis, then I had breathing issues, then leg & back pains, erratic BP, fast heart beat, & fatigue. The spike proteins seem to move around! I’ve seen a total of 5 diff ‘Covid Specialists’, 3 who were new to this money making opportunity. I’m finally with the right docs & can report that most of my symptoms are now gone. I still have a little fatigue but that’s from EBV antibodies were re-activated.

Learning from my experience & LOTs of research here in US & abroad, I would say it’s very important to get with a Covid Specialist who has treated lots of patients over the past 3 years (& with success).

Don’t give up! Research, research!

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critterpo3 | @critterpo3 | Jan 11 3:28pm
In reply to @critterpo3 "I am 67, 2 yrs and 1 month into long covid. My husband and I caught..." + (show)
@critterpo3

I am 67, 2 yrs and 1 month into long covid. My husband and I caught the Delta Nov 2021. He was bad in the lungs, all I could do was try to keep his oxygen above 83 . I smoke. I got it in my guts. No help, we thought we were going to die. He was doing better after a few months. The horrid unrelenting pain in my guts, the neurological imbalance, uncontrollable shaking outside, inside tremors, vertigo, skin rashes, horrid dry mouth, extremely dry skin/changes, sores, hot sweats/cold clamy, tinitus, chills (no fever now), hypertension, anxiety/depression (dealing better with after 2yrs). No appetite, food tastes bad (I could smell chemicals in bread and any king of meat smells horrid. I smell everything and extra smells. Really bad memory loss, can't function as well. House bound. Don't drive....Most of everything that most long coviders are going thru. Along with being told that you are fine. And your crazy. And nobody believes you. (Acutally 1st urgent care Dr said dementia, psychosis...go home, put on a tube top and get some sun.) ;(
At 120 pounds in 2021, had muscles, was healthy, happy, not on any meds. Busy on our small ranch, cows, chickens, garden, greenhouse, sewing, guitar....we built our house with our hands....and now I am a shell of myself.
In the first months of all day everyday pain, I would have bouts of not being able to walk for weeks...like paralyzed. Kept coming and going. My husband kept saying it was like I was full of toxins. Felt like my liver, spleen and kidneys were swollen. I have bled 11 times from the beginning of covid until the last time this June, 2023, bright red over 1/2 c. each time. And not that I was going to the bathroom, like my body had too much blood and had to purge. I had endoscopy and 2 colonoscopies, didn't find the cause. (xrays, ct)
The jumping shakes came about March? this year, so horrid, very pronounced uncontrollable body movements (heels come off the gtound). I had a blister looking thing come up on my forehead at month 4 (Feb 2022), they took out rare cancer, a typical fibrothomax this June. We both had covid toes.....I have had covid tongue 4 times (and coming back again!). The first time (Dec 2021) was horrid, white coating, swollen so bad I couldn't eat/talk, blistered, still have crevasses down my tongue. That's when I went to about 90 pounds, still fluctuating. I am at 99.8 right now (yay). I'm up in the middle of the night, every night still, with gut pain/burn/sweats for few hours (at least its not all day/everyday, since about April this year), along with the shakes, not walking straight, running into things, my legs give out, twitches in face/hands/feet (some days real bad). I try to stand still.....and my body sways front to back, like rocking on a boat...if I sit still its not so bad. If I move fingers/feet or face movements....they move 3 or 4 times instead of once. Per my research....I have been on protocols. Or I might not be here now.
I had rare case of mono at 17, went from 120lbs to 89,hospitalized 2 wks, red/body swollen, 106 fever, hep A, swollen liver/spleen, comatos for 6 months.
I also have history of Varigate Porphyria in my family. Which is extremely hard to diagnois. But has some of the same symptoms.
Did I reactivate EBV........Or did Porphyria get jump started for me ?????
I did get urgent care to do an EBV test April this year
IGM was < 36 ; VCA IGG high 632 ; EBNA IGG high 281
Porphyria is very difficult to find and the test was not done correctly. Too complicated.
NONE of which are good outcomes......am I in a cytokine storm.....
May of this year, I found a telemed (thank God) who has been trying to help me. Naltrexone has helped w/jumping shakes and with focus/anxiety. Now I remember why I am so angry. Got two back to back bad colon infections, er twice this summer. After metro/cipro 2 wks the first time....I was hungry for 18 days and ate. Got the second infection...amox/clav one wk....hungry...ate. Then back to where I am again.
Trying to see a neurologists and hemotologist at this point.
Telemed and IV therapist decided we are going to try 3 sessions of NAD+, glutithione and B vitamins in IV. Then try Methelene blue after that if needed. I want my life back........
Praying for us all.....

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Just had new EBV test and porphyria urine test done......both are very high. I now have a urologist appt., MRI next week, neurologist next month and ortho for my spine in August. IV hydration with NAD+ seems to be helping some (head drainage, focus) and had glutathione added on at 3rd infusion. Next week....IV w/Nad+ and oral methylene blue. Still taking the naltrexone which has really helped the shakes and brain fog. At least I feel believed and they are looking now....thank God. Thankful to all of those medical people that are helping us find answers.

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lkirnbauer | @lkirnbauer | Jan 12 9:26am

I feel your pain…I contracted Covid in December of 2022 and lost my taste and smell. I still don’t have my taste or smell and am currently trying acupuncture to try to regain it. I’ve had about 20 treatments and so far not much if any improvement. I will be seeking out another treatment that I’ve been hearing about called Stellate Ganglion Block where Lidocaine is injected into either side of your neck. It has worked on many people suffering from this and I’ve also heard the longer you wait to get your taste/smell back, the harder it is to do so. You have made me feel better with all of your ailments and I sure do hope you get some relief soon!

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