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.

rsfcowgirl | @rsfcowgirl | Jul 26, 2022

PS. Other holistic measures that I utilized +which I believe contributed to my improvement include positive music, stimulating my olfactory sense w essential oil inhalation (lavender+orange), regular high concentrate Epson salt baths (magnesium uptake), prayer +positive meditation, and as much stress reduction as possible. Stress -even a little- would devastate my system. I had no reserve or resilience.
I believe even sitting out in the fresh air for a short time contributes to recovery. I believe recovery is a cumulative + incremental process. Every good thing helps. Quiet gentle body massage w heat is also very therapeutic for our nervous systems. Last, I just ordered a therapeutic red light for therapy. Haven't tried it yet but it's used in gyms, Veterinarian care, etc. I believe in an holistic approach.

REPLY
glennathill | @glennathill | Jul 27, 2022
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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Any medications they suggest? All my test come out find also but here non of the Doctors do anything other then referring me. I play ping pong back in for from primary physician to neurologist

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2 replies
jennifergillan03 | @jennifergillan03 | Jul 27, 2022

I am with you. I was experiencing the same. I am currently at AVIV I am getting treatment in a hyperbaric oxygen treatment. I feel like I’m coming back to life. I have had longhaulers lots of ups and downs. Lots. I went to Mayo of the PRC program. It has changed everything. You symptoms are real. Things won’t get better until you find the root cause. Your not crazy but Mayo showed me it’s in your motor and sensory cortex. I have had dibilitating symptoms since September 2020. Meet Dr Munipalli and you can reach out to me as well. I’m #covidrecoverymama disabled bonemarrow transplant nurse and pediatric oncology nurse. Don’t give up. Google sensory sensitization CSS. Dr Sletten. Be well.

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rsfcowgirl | @rsfcowgirl | Jul 27, 2022
In reply to @tgrfan2022 "Hello! I’m just throwing some probably more than obvious questions but I’m dealing with long Covid..." + (show)
@tgrfan2022

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

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Hi Amy. I noticed in my own group of symptoms that many had the Vagus Nerve in common. I too am doing work along this line. My labs were all within normal limits so I felt free to try safe but non-traditional approaches+many brought improvement.

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rsfcowgirl | @rsfcowgirl | Jul 27, 2022
In reply to @infosecdad "Thank you for the reply and experiences. I don't consume milk or alcohol, but some gluten...." + (show)
@infosecdad

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 :-/

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I found that stress - whether exertion, extreme temperature or emotion/mental- devastates my system and I decompensate fast. It's hard to maintain stability. I select the ”least stress” option when possible. I have a rebound process of music, aromatherapy, prayer, nutritional supplement drink etc. I believe science+medicine will continue to discover answers and we'll have better options soon.

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1 reply
infosecdad | @infosecdad | Jul 27, 2022
In reply to @rsfcowgirl "I found that stress - whether exertion, extreme temperature or emotion/mental- devastates my system and I..." + (show)
@rsfcowgirl

I found that stress - whether exertion, extreme temperature or emotion/mental- devastates my system and I decompensate fast. It's hard to maintain stability. I select the ”least stress” option when possible. I have a rebound process of music, aromatherapy, prayer, nutritional supplement drink etc. I believe science+medicine will continue to discover answers and we'll have better options soon.

Jump to this post

Yes, stress absolutely physically manifests itself now with minimal effort, it can be noticeable within minutes of high stress situations.

My problem is that it's almost impossible to create a low/no stress environment right now.
I'm the sole source of income, work multiple jobs, have two kids in college (with two more at home), financial strain, and so on. I highly value things that help destress or minimize stress for me; I would dearly love to just stop and rest until my body recovers, but it's not a feasible option right now as we would lose our house and such.

REPLY
1 reply
rsfcowgirl | @rsfcowgirl | Jul 27, 2022
In reply to @infosecdad "Yes, stress absolutely physically manifests itself now with minimal effort, it can be noticeable within minutes..." + (show)
@infosecdad

Yes, stress absolutely physically manifests itself now with minimal effort, it can be noticeable within minutes of high stress situations.

My problem is that it's almost impossible to create a low/no stress environment right now.
I'm the sole source of income, work multiple jobs, have two kids in college (with two more at home), financial strain, and so on. I highly value things that help destress or minimize stress for me; I would dearly love to just stop and rest until my body recovers, but it's not a feasible option right now as we would lose our house and such.

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I understand. But keep in mind that your family values YOU above ALL material possessions +life opportunities. Drs don't know the consequences of pushing ourselves with this new complex syndrome. Consider getting a top quality pro financial consult to make sure you aren't missing some viable options. I understand the desperation to keep it all together. I also know that we can hurt ourselves in that pursuit. I believe your first responsibility is to survive to be here alive for your family. Praying for you. 🙏

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27, 2022
In reply to @srbrown1980 "I’m looking for some help, some reassurance, some support anything really. My wife is 51, she..." + (show)
@srbrown1980

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.

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Welcome @srbrown1980. This must tear at your heart to see your wife, who deals with multiple conditions well, having such struggles since COVID. Have you sought the help of a specialty post COVID care clinic? Living in a small remote town may make this a challenge. Here is a list of PCCCs from Survivor Corps https://www.survivorcorps.com/pccc

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1 reply
srbrown1980 | @srbrown1980 | Jul 27, 2022
In reply to @colleenyoung "Welcome @srbrown1980. This must tear at your heart to see your wife, who deals with multiple..." + (show)
@colleenyoung

Welcome @srbrown1980. This must tear at your heart to see your wife, who deals with multiple conditions well, having such struggles since COVID. Have you sought the help of a specialty post COVID care clinic? Living in a small remote town may make this a challenge. Here is a list of PCCCs from Survivor Corps https://www.survivorcorps.com/pccc

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Thank you for this connection. We have not connected with anyone but I believe we could possibly make the mercy hospital connection work for us. We will be in contact with them tomorrow for more information. Once again thank you. We didn’t even realize we had doctors that might specialize in helping .

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rsfcowgirl | @rsfcowgirl | Jul 28, 2022
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.

Jump to this post

Hello again. There is a federal program administered thru each state via County services that is specifically for COVID-19 patients who are unable to work bc of COVID disabity AND have a job to return to. It provides housing and utilities monthly payments for up to 18 months. Paid to utility co +landlord/mortg holder directly. money is at prepaid 3 month increments.

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