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Newest and best long covid recovery treatments?

Posted by lorivwebb @lorivwebb, Sep 10 3:21pm

Has anyone had any substantial or helpful treatment for severe long covid?
Interested to hear any novel therapies being explored. At this point, I am so tired and now have pots and ME with significant symptoms for 2 years.

Looking for some hopeful ideas.

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

lynnryan | @lynnryan | Sep 22 4:28pm
In reply to @kellysmail2016 "Best of luck. Would love to know how it goes. I too have terrible fibromyalgia. (ME)...." + (show)
@kellysmail2016

Best of luck. Would love to know how it goes. I too have terrible fibromyalgia.
(ME). I also have fatigue that unbelievably. I have to use a walking device and can only go 30 feet or so and have to sit. My heart rate goes high and I can’t breathe but my oxygen doesn’t drop much. I stay about 95-96. The following day I am in bed all day. Sometimes 2 or 2 days depending on how long I stay out. I also have two knees that need to be replaced, spine damages that need surgery and two hips with bursitis. I swell now into my neck. They won’t operate until I loose weight. I have gained 140 lbs from LC damages. I hate this mess.

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I totally get you. Got Covid in the beginning 3/2020, and haven’t been able to work since 8/2020. We have similar challenges. Was on a walker for awhile, and sob and extreme fatigue. I have found pacing does help some. I too have spine issues, severe stenosis in neck and lower back. Had surgery on neck, and am getting cortisone shots in my back, which really helps. May want to look into it. I gained weight as well but started MOUNJARO shots for weight loss in March, and have lost about 50 pounds. It really works. I hope things start to brighten for you.

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1 reply
kellysmail2016 | @kellysmail2016 | Sep 22 4:43pm
In reply to @lynnryan "I totally get you. Got Covid in the beginning 3/2020, and haven’t been able to work..." + (show)
@lynnryan

I totally get you. Got Covid in the beginning 3/2020, and haven’t been able to work since 8/2020. We have similar challenges. Was on a walker for awhile, and sob and extreme fatigue. I have found pacing does help some. I too have spine issues, severe stenosis in neck and lower back. Had surgery on neck, and am getting cortisone shots in my back, which really helps. May want to look into it. I gained weight as well but started MOUNJARO shots for weight loss in March, and have lost about 50 pounds. It really works. I hope things start to brighten for you.

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Thank you so much for feedback. I get gel shots in the knees and cortisone in my spine now but not the relief I’m needing. Where are you located? State is fine. I ask because I’m in a largely populated military area. I got it 4/2020. Got pneumonia thereafter. Then a numbing in my head like I was wearing a large helmet for weeks. It went away. Got it again in Late February 2021. Then I got pneumonia again. That’s when I really got sick. Couldn’t walk more than 5-10 feet and I would profusely sweat, have to keep rescue inhalers in hand. I was dancing weeks earlier to pop type music. Fast. Nothing the same since. I hope light of day will start shinning soon. The weight would help but I can’t exercise. I will surly mention Mounjaro!!!!thanks and best to you!!

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jviper36 | @jviper36 | Sep 23 6:42pm
In reply to @lynnryan "I live in Florida, and was excited to see the post on here about AVIV. I..." + (show)
@lynnryan

I live in Florida, and was excited to see the post on here about AVIV. I had read about the Israel study awhile ago and the benefits they found with HBOT. Of course AVIV program for some $55,000 is way out of my financial range, plus having to find accommodations for 3 months. I live in Sarasota and started doing local research finding a HBOT center in town. They have plans for different treatments with 30 day plan for $7400. Way cheaper than AVIV, but still a significant expense for someone who is disabled with LC. My LC symptoms are all neurological. I also got fibromyalgia from LC and read that HBOT helps with that as well. Based on the information out there, I’ve made the decision to give it a shot. Once I get a chest X-ray, which they require, I’m hoping to start later this week. After trying just about everything, I’m very hopeful about this. Wish me luck! 🤞🏼

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you may want to check out affordable hyperbaric solutions and try renting. That is what I am doing. I tried 2ATA using the same protocol as AVIV in Florida. The cost was $295 per 2 hr session. Cannot afford to do that again. I am going to try 1.5 ATA and rent.

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1 reply
lynnryan | @lynnryan | Sep 24 8:34am
In reply to @jviper36 "you may want to check out affordable hyperbaric solutions and try renting. That is what I..." + (show)
@jviper36

you may want to check out affordable hyperbaric solutions and try renting. That is what I am doing. I tried 2ATA using the same protocol as AVIV in Florida. The cost was $295 per 2 hr session. Cannot afford to do that again. I am going to try 1.5 ATA and rent.

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Did you experience any relief?

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