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Long Covid: TWO YEARS NOW.

Posted by c1john @c1john, Sep 22 6:15pm

I have had Long Covid now as of tomorrow 2 years. I have experienced a lot of pain, chronic pain, and so much anguish.
I have got a lot of answers on here and with my Dr. but I am still suffering with vagus nerve problems, nausea, vomiting and brain fog and chronic fatigue.
I hope someone on here has recovered!
I have tried a lot of different treatments. I have had an MRI, an EGD, a CAT scan, and complete lab workups (except for Sars Vov2 Antibody Profile test, but I am going to ask for one now.
I hear they are not looking for ways to help people with Long Covid or the inevitable sides like POTS, MCAS etc. so I dont know how we are all supposed to carry on like nothing happened especially since we know it invades pass the blood brain barrier.

I have tried various sorts of treatments but nothing is lasting and I just hope on a daily I won't regress worse.

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

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Terri Thompson | @territhompson1956 | Sep 26 2:13pm
In reply to @c1john "@klf58 thanks! I am sorry that has been five years for you! Gosh, that is a..." + (show)
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@klf58 thanks! I am sorry that has been five years for you! Gosh, that is a long haul. 🙁 The fatigue is a major problem seems like across the board.

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@c1john I had COVID IN 2020/Nov. I’m thinking I also had it Nov. 2019 looking back. We were out of the country then visited Arizona. Dec. and January were terrible. Trouble breathing and sore throat. They said I had bronciolitis. I was hospitalized over night and sent home. COVID came right after. Nov. 2020 I nearly died. I was in the hospital one week. Hospitalist could hardly wait to get my bed and kicked me out basically. Home a few days deteriorated and went back in for a week. I used oxygen until May. Completely wiped out. I am left with Chronic Fatigue Amy leg muscle aren’t working very well I’ve don PT three different times and it hasn’t helped. I now have history of falling. Problem is I’m to weak to get up so I have to get help. Several falls have been away from home. I broke a bone in my foot. I think I’m going to try a little piloties (sp). I have a 15 y/o kidney transplant. I wish I could improve! I feel sorry for those who are like me. I had some severe depression and lots of tears. But that’s over. Good luck to everyone on recovery. ❤️

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dareyu | @dareyu | Sep 29 9:29am

We are trying vagus nerve electrical stimulation, ldn, exercise, and close monitoring of energy level and stress. Hope to start meditation. After 2 years of 15 plus symptoms, we finally are seeing results. Not medical advice, just something that has worked for us for 3 weeks now. Takes about 2 to 3 hours a day to do all.

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h2998sc | @h2998sc | Sep 29 2:15pm
In reply to @drbf "I think the key to this is to address health issues we're experiencing after having COVID,..." + (show)
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I think the key to this is to address health issues we're experiencing after having COVID, rather than looking at this as "long COVID."

I think doctors tune us out if we say we have long COVID because they don't know what to do with that.

It is SO HARD to get a physician in your corner when you have so many things going on.

Fatigue is a symptom of so many illnesses. I think we have underlying illnesses that are not diagnosed causing our symptoms.

Because of our genetics, the state of our immune system going back to our childhoods, and our bodies' individual reactions to the COVID virus, I believe we are all experiencing various illnesses, not one disease: "long COVID."

I have also come to believe that many of these illnesses are hidden autoimmune disease triggered by the spike protein.

It's just awful that so many people are blown off and are experiencing horrible quality of life issues with no answers.

I've had multiple illnesses since December 2023. Only recently have I gotten any potential answers, but only because I have had to advocate HARD for so long and spent my own money on labs, that finally, finally showed a huge irregularity, which led to further testing.

I was recently in the ER for stroke symptoms and the inability to bear weight on one of my legs.

I didn't have a stroke.

One issue was identified: a likely ongoing internal shingles infection since I first had COVID in late November 2022.

I also found out that I likely have secondary adrenal insufficiency, but I've had to wait several months to get into an endocrinologist qualified to address it.

That's just part of my story, but I want to encourage you to not think of what is going on with you as "long COVID", but as a possible cascade of other illnesses triggered by the virus!

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@drbf https://www.youtube.com/watch?v=Pvq35ROP8Fg
Got me going the right direction.5 years out now....71 yrs old,rarely feel a twinge of stomach pain that disappears within several seconds.THAT's a HUGE milestone.Still need to get to the gym to work my legs...I stand all day.I'm feeling very good.Slight emotional exitedness at times that's totally workable.Lots of damage.Lots of time.My recovery journey really took off 3 years ago when I found this Awesome Dr.
Hang in there and God Bless...

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h2998sc | @h2998sc | Sep 29 2:22pm
In reply to @c1john "@klf58 thanks! I am sorry that has been five years for you! Gosh, that is a..." + (show)
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@klf58 thanks! I am sorry that has been five years for you! Gosh, that is a long haul. 🙁 The fatigue is a major problem seems like across the board.

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@c1john I'd start at Liposomal Glutethione,1k mgs,2kmgs vitamin C,800 IU E,PLUS NAC 2400 mgs.This has to be healed at the cellular level.This virus is extremely well engineered.Stay strong!!

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akabarracuda | @akabarracuda | Oct 1 4:02pm

GAME CHANGER - Mestinon (pyridostigmine) is a prescription medication (primarily used to treat myasthenia gravis) and i've been on it for 6 months now. I have 60mg pills - started 1/4 of a pill twice a day for a week, then 1/2 a pill twice a day for a week and now i'm on 1 pill twice a day. My doctor from Columbia Pres in NYC prescribed this to me and would like me to stay on it for a bit longer. I couldn't do anything without a cfs crash before i started it, now i can clean my house, my brain fog is gone and both Sunday and Tuesday i walked over 8 miles. I was tired afterwards, but... would you be? I skipped a day of meds by accident (visiting a friend) and i was very very tired w/o doing much. I understand this doesn't help everyone, but it is LIFE CHANGING.

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diverdown1 | @diverdown1 | Oct 2 7:24am

3 years now. I am writing down all the medications and supplements that you folks post here. When I see my doctor again, I am going to present her with these. Thanks to all of you who are here. It is much less isolating to have you.

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oakland99 | @oakland99 | 6 days ago
In reply to @akabarracuda "GAME CHANGER - Mestinon (pyridostigmine) is a prescription medication (primarily used to treat myasthenia gravis) and..." + (show)
Profile picture for akabarracuda @akabarracuda

GAME CHANGER - Mestinon (pyridostigmine) is a prescription medication (primarily used to treat myasthenia gravis) and i've been on it for 6 months now. I have 60mg pills - started 1/4 of a pill twice a day for a week, then 1/2 a pill twice a day for a week and now i'm on 1 pill twice a day. My doctor from Columbia Pres in NYC prescribed this to me and would like me to stay on it for a bit longer. I couldn't do anything without a cfs crash before i started it, now i can clean my house, my brain fog is gone and both Sunday and Tuesday i walked over 8 miles. I was tired afterwards, but... would you be? I skipped a day of meds by accident (visiting a friend) and i was very very tired w/o doing much. I understand this doesn't help everyone, but it is LIFE CHANGING.

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@akabarracuda - that is amazing that it is working for you. Have you noticed any side effects and does it help decrease muscle pain? I’ve gradually worked up to two 10 minute walks a day but I still have a lot of muscle aches. Have been trying to increase the amount I walk all summer, but it hasn’t happened.

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akabarracuda | @akabarracuda | 6 days ago

The Mestinon has helped across the board! The pain in my legs has been subsiding. It was in both, now mostly in my right. I could only describe it as like the day after the worse leg workout, and the most aggressive massage... so my muscles and skin hurt/was sensitive. I actually had/have a sheet riser https://www.amazon.com/Blanket-Lifters-Adjustable-Support-Recovery which has helped I used to commute by walking (NYC) and that was impossible.
* All arthritis creams did nothing
* advil sometimes helped
* thc/cbd gummies (1/6 of one) sometimes helped
* I believe this Mestinon helped. On 2 days this week i walked over 7 miles. My legs got a little tired, but nothing like it was
* Also dry needling helped me feel like normal.

I hope SOMETHING helps you!

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akabarracuda | @akabarracuda | 6 days ago

Oh! I forgot to mention, I also started HRT because women have estrogen receptors everywhere. I was trying everything, but i THINK it was the Mestinon that really helped. Back in April, i over did it (5miles in nyc) and i could barely get home. The pain and stiffness walking down the street and up/down the stairs was scary.

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