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.

Steve Dykema | @sdykema | Aug 27, 2022

I'll shorten the story around my history of symptoms for a later times but summarize by saying that I'm in my mid-50's and the timing of my contracting of Covid and the journey forward (including the timing around my relapse of worsening pain, etc) is very similar to your's. I've been through a series of tests and visits with pulmonology, neurology, PT, neuropsychology, vestibular medicine, ENT, gastroenterology, spine clinic, sleep disorder center, cardiology, a few ER visits for chest pain, gastric emptying study, autonomic testing & EMG study, as well as other testing. There are a few items that have helped gaining understanding of pain behaviors along this journey that have been helpful in managing my days in the lead-up to my upcoming visit at Mayo Clinic later in September:
1) Working with my neurologist on pain and symptom management with the resulting small fiber/peripheral neuropathy by taking a lower dosage of Lyrica to take the edge off of the pain to help with my work day. Also, he prescribed a low dose of Topamax to help with the internal tremors I've been experiencing. He's also been fully supportive of my upcoming with with Mayo.
2) The vestibular medicine physical therapist I've working with (in coordination with the Long Covid Care program at Medical College of Wisconsin) has been able to support treatments to address the constant dizziness I've been experiencing for the past several months. While not completely eliminated, good progress has been made to address the inner disturbances I've experienced.
3) Lastly, the neuropsychology area from the same referral with the Long Covid Care program was able to assess my cognitive impairments with executive functioning and provided me with several recommendations to utilize for the concerns I've been experiencing.
I hope the above is of help to you as you seek to find some answers and tangible solutions to get your health on the right path forward.

2638 | @2638 | Sep 14, 2022

I am right there with you. Nov of 20 for me. Mild case, cold like, never had such thick snot, never went into lungs, cough was more from the snot issue. Head ache, fever for 10 days straight. Body aches, big time, don't really even remember days1-4...slept allot! My muscles in my legs after we so reactive...my job keeps me on my feet 9 hrs a day, 1 hr break in middle. Tightness and spasums galore, muscles every where were sore, arms stiff and spastic. Head aches often, tired always. Vision issues, changes. Some days i had the double vision, not quite double...more like 1.5..like if i am looking at the tv and it has a word in middle of screen, i will see it and another slightly above and slightly right like piggybacked...? If I am on a screen, my eyes get tired for lack of a better word, things get progressively blury till i cant do it. Like now, you will notice more and more type O's. Things gradually worsening till... in Jan of 22 I got it again, 2 shots inbetween, even lighter case, cold like, again w the thick snot, dy cough, fever days 1-4...they said go back to work after day 5(dumb) too sickstill, wayyy tired, soooore. day 9 end up in ER after trying to work, made it 4 hrs, should of left after 2. Heart rate went nuts...husband has tachicardia so i used his finger monitor...185. 160 at ER. evenyually by 8pm i was home, they sent me home when it hit 100. it didnt stay there, 120 by car...continues now, shower 145-160. dishes 120, walks 120...resting 70s. pots like but heart doc says after many tests that i stay in sinus rythem...autonomic. sent to neuro...which works because other symptems are all nuero. muscles in arms worse, and now over time include neck chest back face.....rigid spastic sore 24 7. I nolonger can lay down at night. i have lost range of motion in shoulders, weak arms hands, neck. my head feels too heavy to hold up. 4 mri's later they tell me not MS. no demyalating. c spine the lorasic is reverse, the c is backwards. t spine and c spine is being shoved around by the stiff muscles??? c spine 5-6 is remodling the cord. As of 2 minutes ago unknown to me my neuro doc referred me back to rheumatoligy,(thats where i started). The dry cough never stopped, headache always close by, but the neuro muscle stuff if by far my #1 problem, I havenot been able to work since Jan, and see no end in sight, it just gradually gets worse... my mind is not the same either, i get distracted easy, I cant recall names, places, I get cofused easilly...I do not feel like myself! I see my docs so little and so far apart, if anyone has an idea as to who or what dept I should be seen by, Please speak up, I am affraid my life as i knew it is gone!

kathysmith | @kathysmith | Feb 15, 2023

In reply to @rsfcowgirl "Hi. I research + apply my own care plan to whatever I'm dealing with. This is..." + (show)

@rsfcowgirl

Hi. I research + apply my own care plan to whatever I'm dealing with. This is MY OWN choice + am speaking only for myself.
For the 1st time in my healthy lifestyle. I've added these supplements. This is based on my research and most important, selection of credible manufacturers. I've added reishi mushroom supplement for relaxation +sleep enhancement at night. I've added Lion's Mane mushroom supplement for neural connection enhancement and energy. I've added curcumin in nanotech form for pain reduction and energy. I introduced each one individually. I take Taurine now too for brain performance. I've had excellent results from these. I was taking Ibuprofen around the clock for a year. I stopped taking it totally the 2nd Day I began the Curcumin bc I didn't have pain (hips, low back, etc) anymore. The mushroom supplements have restore energy which has enabled me to begin to rebuild lost muscle mass (I take protein supplements w/ it.)
Taurine seems to have improved my reflexes+coordination and the total package of ALL the products I'm taking ( listed elsewhere here) often gives me a sense of well being and what feels normal again.
I have a background that allows me to be discerning in my research and self care. I've followed publications on healthy and unhealthy living my whole life. So I feel confident in my own choices for my own self health care beyond the traditional medical care, which I also participate in. If I had the money, I'd be going for acupuncture, as well.
Take my input as something to know about as something that worked for me. While a diagnosis may be alike among the group, our individual overall medical status is certainly vastly different. Always remember that what is helpful for one person may be detrimental to another.
However, I sympathize with how the traditional medical system offers you nothing but frustration and lost time, as you describe. That's why I post my own care plan. To expand the concept of "alternative medicine." But be clearly advised it's an unregulated area with much fraud in it. There are educated practitioners in this field who can help navigate, if you can't discern. But I've gone from not being able to get out of bed except to use the bathroom+ eat something that didn't require cooking or energy (6+ months like this) with constant body pain to doing simple vegetable container gardening and having 85% improved cognitive function - after my double certified doctor declared after all testing " Nothing will get better on it's own, you are getting worst - your cognitive impairment could potentially be long term- and the bottom line is- there's nothing we can do for you."
That's what motivated me to help myself non- traditionally. After just 10 weeks I went back to him to show him he was wrong.
I still have limited energy reserve, some memory issues etc. But I'm able to do the basics of living and have a sense of well being. I'm going in the right direction.
I pray you find alternatives that will be appropriate and successful for you. There's another entire realm of options. Keep hope alive. If one door closes, remember there are other doors. Proceed with wisdom.

Jump to this post

I just turned 79 (female) Had cocussion 2021 and post comcussion syndrome. Also have adult ADHD diagnosed so years ago. Take an anitdepressant for depressio. Have brain fog at times and always back and neck pain.
Keep hearing about lions Mane mushrooms being good for brain, but not sure if info. is just a sales pitch.
Opinion?
K

jackn | @jackn | Feb 16, 2023

You might give a look at:
https://www.reddit.com/r/covidlonghaulers/comments/nva2kc/in_case_you_missed_it_antihistamines_proven/
The reddit long haulers group can be a bit depressing but there is a good "Info" section with some helpful recommendations that you may use. Good Luck.

briandube | @briandube | Feb 16, 2023

Hi @infosecdad
Just writing to let you know that you are alone, and perhaps this gives you some mental strength to keep going. since January 2022, I have all these side effects. Insomnia, I can only sleep (although I don't feel that my body has rested) with a combination of zolpidem 10mlg, melatonin 10mlg, and lithium 300mlg. I have been diagnosed with deep depression (I even was hospitalized in a psychiatrist), and I have a significant eating disorder. I don't feel hungry or satisfied, can't deal with stress at all. I have tremendous pressure in the back of my head, lost more than 20 pounds, extremely slow digestion, stopped sweating, constant tinnitus in my ears, amount some other symptoms.
I have done as many exams as possible, and none reflects any abnormality. So I still looking for answers as well. if I get any update, I will let you know immediately.

briandube | @briandube | Feb 16, 2023

In reply to @briandube "Hi @infosecdad Just writing to let you know that you are alone, and perhaps this gives..." + (show)

Sorry I meant “you are not alone”.

View Translation

rsfcowgirl | @rsfcowgirl | Feb 16, 2023

In reply to @kathysmith "I just turned 79 (female) Had cocussion 2021 and post comcussion syndrome. Also have adult ADHD..." + (show)

Hi. Happy 79th.
I don't know about interactions between your anti depressant and Lion's Mane mushroom, but info is available on high profile legit medical websites.
I suffered major cognitive deficits and exhaustion. I added *lab confirmed* Lions Mane supplements and I had measurable improvement. I only add only one new thing at a time. That fruiting body mushroom component ( as opposed to other less potent forms) had been a genuine therapeutic agent for me. We're all different. And not all products are legit sold under various labels. But I have nothing but good to say about it. I take "Real Mushrooms" brand via Amazon. 3rd party tested. I'm a Senior too. Had no negative effects for me.

sbt19 | @sbt19 | Feb 17, 2023

In reply to @pattysgirl "My sister-in-law is suffering from these as me symptoms. She had tried numerous diets, vitamins, supplements,..." + (show)

Who is the doctor in Kentucky? We live in KY and after ne year post Covid my husband is exactly the same: no better but no worse. He is also pretty much homebound.

oklahomahaley | @oklahomahaley | Feb 18, 2023

In reply to @rsfcowgirl "Hello again. There is a federal program administered thru each state via County services that is..." + (show)

Hi, I live in Oklahoma and rent a pool house from a homeowner. I wonder if this program could help me. I’ve had long covid now over a year and so I’m starting to look into how I can get any help and resources since my worst symptoms ate migraines more than 15 days a month. And when it not a “migraine day” everyday is at least a headache day. Thank you

oklahomahaley | @oklahomahaley | Feb 18, 2023

In reply to @artistandtwin "@bunzman ... I don't know if my sinuses are causing all this or not. It sure..." + (show)

Look up :Kevin Smith sinus migraine institute in Houston.

This doctor has a theory that nose bone spurs or diviated septum is a huge underlying cause of migraines. But my best friend had a friend who had a new lease on life due to getting rid of her migraines at this clinic. I’m personally to the point that I’m ready to try and find doctors in any state.

View More View Less

Please sign in or register to post a reply.