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Post COVID for 21 months now and still declining
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.
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So sorry to hear your struggles. And I don't really have anything to add. I'm in about the same boat. I had covid a few times, I worked in outpt rehab. Exercising an hour a day and studying an hour a day, plus full-time work as a single mom. I remember complaining to the doctor I was more tired than usual because I was training for my first triathlon, and had to do it in 20 minute increments three times a day I'm 58. And he said I think this is post-covid. Then I got covid again, massive headache in the ER. I have been on disability 3 months, and my fatigue is worse than ever. My cognition is worse as well. Only my visual disturbances and dizziness has improved. I have tried every supplement, many medications. My brain feels like it's on fire. The first thing to help my headaches finally, is topamax plus nsaids. And when my head feels better I seem to have a little more energy. Just started this a week ago so we'll see if it continues, but otherwise overall I'd say I've been declining steadily, even resting. Sorry I don't have any words of advice but I know it helps me to know I'm not alone. Thank you very much for sharing your story.
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2 ReactionsIts destroying every day more lives
I was sent to speech/cognitive therapy to get some tools and exercises for thinking and communicating more clearly.
I’m also meeting with a neuro-psychologist (therapist) who deals with people suffering mental damage/decline. She has unique experience in that area and consults with my other doctors to help me.
I was also recommended to go to physical therapy to rebuild my body.
I’m also doing the endless tests, meds, and other stuff with Covid programs too.
I haven’t tried any vitamins or supplements other than my daily centrum multivitamin. I just try to eat a healthy diet. I’m pretty unsophisticated as a chef. It’s about keeping away from junk food, soda, and stuff that seems processed. I eat premade Walmart bagged salads, raw fruits and veg, chicken breast, cheese, and nuts mostly. Not very exciting. But it’s a variable, like going to bed at 10:00, that I can control to help me maintain some balance.
18 months for me. Some days are good, others are worse, and some days I just need to rest.
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2 ReactionsWhat I have learned from my body is to not exercise or walk.
I’ve had Long Covid for almost 2 yrs now. It’s pretty frustrating. Thru all this time I’ve found out that if I do too much ir try and take a walk I just feel worse the next two days.
So, now I do a couple things around the house and then rest
I can’t push myself or I could end up in bed and feeling very very sick!!
Be patient with yourself. I’m sure we’ll eventually get well.
First of all, I’d like to say how sorry I am for your struggles with LC. I also have been told I have LC, I lost my taste and smell after Covid in December of 2022. My doctor tells me it’s long covid, but I’m not so sure any more. I also was recently diagnosed with a thyroid condition, Hashimoto’s/hypothyroidism. I’m going to suggest that you have your thyroid levels checked. You never know! I also was extremely tired and once I got my diagnoses and started taking the correct meds, I felt much better.
I wish you all the best on your health journey!
Covid can push you into conditions that were mild and even unnoticed. It can reactivate something you had years ago. So yes, getting the proper treatment can get you on the road to recovery. The trick is figuring out what is making you sick. The trick is finding healthcare providers to help you work out the puzzle. A difficult task to perform when you are ill.
I’m on the journey too. Twenty months in, and finally with a Covid practice that may be able to help me. Good luck to all!
I’m curious about this Covid Practice you mentioned. May I ask where this practice is located and the name of it. I’ll drive or fly anywhere at this point! Thank you!
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1 ReactionI live in California and waited on a very long waitlist to finally get an appointment. In your area if you look for an Integrative Medical group they may have some treatment for long Covid. I can’t say for sure that I’m getting help, but the people at this practice acknowledge Long Covid and LISTEN. That’s worth a lot.
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3 ReactionsI have noticed that now I have to be very strict with my diet. Since LC has to do with a systemic inflammation, I follow an anti inflammatory diet. It helps, although it doesn't take all of the symptoms away. If I eat something that is not related to this diet, I pay the consequences the next 2 or 3 days after.
So sorry to hear about ur situation. I had a mild case in June, 2021 & was misdiagnosed for 16 months with food poisoning. I never had a fever, cough, loss of taste/smell, etc. We were on a lot of preventative supplements so Covid apparently went to my gut instead. In Nov of last year, I saw my first Covid doctor & blood tests confirmed I had 5619 in Covid antibodies. Over the past year, I’ve seen a total of 4 diff Covid MDs/experts. It takes a lot of trial & error, even with various doctors’ protocols. What works for one might not work for another. If ur doctor doesn’t have you on supplements such as Augmented NAC, Bromelain, Nattokinase, Vit C, Curcumin, Quercetin (or the off label equivalent which is stronger)…you’re not going to rid ur body of the Spike Proteins which are most likely causing the havoc in ur body. My antibodies continue to decline but I’m not there yet. If you can afford a Concierge doctor (doesn’t take insurance but all blood tests are covered), I highly recommend teledoc, Dr Syed Haider (MygotoDoc.com). Also, he does a Q&A every week on FB where anyone can ask questions. I’m finally improving & am hopeful I’m on the right track. Hope you & everyone else finally find the right combinations for healing as well…