Newest and best long covid recovery treatments?

Posted by lorivwebb @lorivwebb, Sep 10, 2024

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.

@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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@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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@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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@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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@lorivwebb

I’ve had pots for a very long time. Fludrocortisone helps push my pressure quickly but I need a beta blocker for my heart rate. Unfortunately, after covid my beta blocker stopped working effectively and I’ve yet to find a med that helps the extreme Brady/tachy. I’m very well researched in pots though if you need any advice. I’m happy to help. Not everyone is as hard as me with stubborn symptom mgmt.

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I have POTS and SFN from long Covid, and started on 0.1 gm/day Fludrocortisone a few weeks ago. Soon after I started, when I got out of the pool, the heat and humidity overwhelmed me. I had my regular POTS symptoms, but had severe vertigo and nauseau, and I had never had vertigo from heat and humidity before. The next day, the same thing happened, but this time I was at the art museum in a/c. I cut the pill in half, and take 0.05 with breakfast, and the otherhalf with lunch, and this helps reduce those side effects. Have you experienced them? When taken with the dosage split, it is helping my vertical exercise tolerance and ability to be outside and walking around at higher temperatues (60's) without the heat making me crash.

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So, it seems there are some schools of thought that think the dead "spike protein" is what causes a lot of the LC symptoms. Has anyone tried intermittent fasting to help with purging this from your system? I'm not that familiar with fasting but am having to fast (clear liquids only) for 36 hours in prep for a colonoscopy/endoscopy so it got me curious. My understanding is that your body starts to consume the "dead cells" in your body when you fast, thereby consuming the bad stuff/garbage left in your system. Just wondering if this could help with LC and the spike protein. Not sure if just this one instance of fasting will help much but may try it some more and see if it helps and will try and remember (no guarantees there) to post back here if I find it helps at all. God Bless everyone that is dealing with this nonsense! Stay strong and keep on keepin' on...

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@rdflash0788

So, it seems there are some schools of thought that think the dead "spike protein" is what causes a lot of the LC symptoms. Has anyone tried intermittent fasting to help with purging this from your system? I'm not that familiar with fasting but am having to fast (clear liquids only) for 36 hours in prep for a colonoscopy/endoscopy so it got me curious. My understanding is that your body starts to consume the "dead cells" in your body when you fast, thereby consuming the bad stuff/garbage left in your system. Just wondering if this could help with LC and the spike protein. Not sure if just this one instance of fasting will help much but may try it some more and see if it helps and will try and remember (no guarantees there) to post back here if I find it helps at all. God Bless everyone that is dealing with this nonsense! Stay strong and keep on keepin' on...

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I believe I read about a German treatment center that uses medically supervised fasting for LC. I would think autophagy would help. I lost 60 lbs using IF, but regained all after covid and have no energy even with eating, so doctor advised against stressing my body further. I would like to try fasting again, however, as five years out, nothing else has helped.

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I have tried Naltrexone, (prescribed by a dsoctor in the LC clinic at UW) and it caused such anxiety and restlessness I had to stop. Even changing the dosage and time (taking in a.m.) didn't help.

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@lynnryan

Did you experience any relief?

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Yes, it was helpful. I chose the rent-to-own option, so I now have a chamber. It helps with long COVID, but it's not a cure."

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@crowlee

I have tried Naltrexone, (prescribed by a dsoctor in the LC clinic at UW) and it caused such anxiety and restlessness I had to stop. Even changing the dosage and time (taking in a.m.) didn't help.

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My Dr started me with 3.0 mg of LDN…I could not sleep even when I took it in the a.m. She changed the dosage to 0.5 mg and after 2 weeks the joint and muscle leg pain has almost totally gone. I take the 0.5 at night. She plans to change the dosage to 1.0 after one month. Fatigue has not changed.

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