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Glimmers of Hope: Post-COVID Syndrome Research

Sep 2, 2022 | Greg Vanichkachorn | @drvan | Comments (90)

Post COVID Syndrome (PCS) has been part of our language for more than 2 years. Despite that, research on this condition has been progressing slowly. Most of the research in the world has been focused on first figuring out what PCS really looks like and how it affects different populations. While this information is important, many patients are desperate for some news on treatments. Well, today is your day.

In July 2022, a research team from Ireland published their findings on a medication called naltrexone.  Naltrexone is a medication that is commonly used to reverse the effects of opioids. For example, naltrexone could be used when someone may have overdosed on a pain medication like morphine. When used for this purpose, the dosage is typically around 50mg. However, when naltrexone is used at very low doses, for example 1-4.5mg, it has shown to work mainly the immune system. With this effect, low dose naltrexone has been used for conditions such as Chron’s disease and chronic fatigue.

In this study, 38 patients with PCS were treated with low dose naltrexone. When symptoms before and after treatment were compared, a statistically significant improvement was found for fatigue, function, pain, concentration, and sleep.

Now, before everyone starts calling their favorite long haul COVID clinic, the study findings need to be interpreted cautiously. As we have discussed before, no research is perfect, and we must go beyond the title to really understand the limitations. First, this study looked at a very small population of patients. The smaller the number of participants, the less reliable the results are. In addition, the results of the group treated with naltrexone was not compared to a group of patients not treated with naltrexone. Without that comparison group, called a control group, we do not know if the reported improvements are due to naltrexone or just due to something completely separate, like the weather or green grass in Ireland. Also, the patients who were treated with naltrexone were aware they were being treated and examined. Just knowing that can sometimes change how someone feels.

Despite all those limitations, I am still excited about this study and others coming down the pike. It represents finally some first steps in treatment research, and it should be a sign of hope for patients with PCS around the world.

At this time, the Mayo Clinic specific post-COVID studies are only recruiting participants that are being seen at Mayo Clinic post-COVID clinics. If you are a patient being seen in Mayo Clinic's post-COVID clinics and would like to participate in research, please email postCovidRSCH@mayo.edu

Learn more about the most recent developments with post-COVID syndrome by following the Newsfeed and discuss your experience in the Post-COVID Recovery discussion group.

26 Reactions

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lkirnbauer | @lkirnbauer | Apr 1 8:27am
In reply to @anniliz "I have had severe asthma for many years. When I got Covid in October 2022 I..." + (show)
@anniliz

I have had severe asthma for many years. When I got Covid in October 2022 I became deathly ill and because I had no access to Paxlovid I ended up in bed most of the time pretty much for 4 months . In January 2023 my asthma specialist started me on nebulizer treatments initially 6 times every 24 hours. By May I was down to 2 times a day and for a brief time I was only on my regular inhalers but am now taking 1 nebulizer treatment a day plus my long acting inhaler. But I’m still having trouble with the bad coughing and fatigue. I also experience weird electrical type muscle pain from time to time . I’m so sick and tired of being sick and tired and days I do feel better I have to be super careful not to overdo things or I’m sick again for weeks. I’m in physical therapy to regain strength and balance. I had been benefiting from water exercises several times a week but due to uncontrolled coughing since August 12 have not been able to participate. I’m hoping to get back to that this week if all goes well. Psychologically I struggle a great deal. I have a supportive partner but he really doesn’t get it although he tries…my sense of the future is foreshortened and there have been stretches of time in the past year that I thought I should just get it over with and give up and die. But I’m still here striving to have a life and do meaningful things yet it’s almost a daily battle to stay positive.

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I’m so sorry you’re struggling. I too am struggling, but with no taste or smell for going on 1 year and 4 months! After Covid in December of 2022 I lost my taste and smell. I’ve had 2 Stellate Ganglion Block injections to help me regain it, but only a slight improvement. I’ll be going in this Wednesday for my 3rd. It’s the only thing that is giving me hope. It’s very depressing and I too think about ending it. I also have several food sensitivities and have had 18” of my colon resected in April of 2022, so I don’t eat the way I use to. I keep going, but it really is a constant battle to stay positive as you said. I was not given Paxlovid, but the doctor who didn’t prescribe it for me was not my regular doctor as he was not available. I did ask my Dr recently if he would have prescribed it for me and he said he would have treated me with Paxlovid. So now I’m wondering if I had been treated with Paxlovid, would I have lost my taste and smell for this long of a period. I will never know!🤷‍♀️ I wish you strength to go on and hope you find some relief.

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1 reply
bonniefielding | @bonniefielding | Apr 1 9:35am
In reply to @milesalexander "New theory gathering notice is Nicotine patches for Post Covid. Any info and/or opinion." + (show)
@milesalexander

New theory gathering notice is Nicotine patches for Post Covid. Any info and/or opinion.

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I started NP's in January (1/2 patch every 24 hrs) after 3 days I started feeling better. I have been through this for 2 yrs and finally got back to 90% better - this is a game changer people.....what do you have to lose? I went into it with that in mind and low and behold - I'm better.

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1 reply
frking | @frking | Apr 3 8:31am

Hello,
I saw an alternative doctor and was treated for Epstein Baar since there is no cure yet for long covid. Did it help? I think the supplements helped, but I also feel that with time symptoms go away.. I wish you well,

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BeBold | @bebold | Apr 19 6:07pm
In reply to @denglish19 "I'm glad people are seeing good results from this drug. It sounds like one of the..." + (show)
@denglish19

I'm glad people are seeing good results from this drug. It sounds like one of the rare few that might actually treat a root cause (perhaps over-stimulation/exhaustion of the adrenals?) and that's great.

The same result could probably be found by changing lifestyle and diet. I've known people who have revered MS and other auto-immune conditions -- a lot of it is diet. Yes, our adrenals are a mess. It's not a surprise. We are an over-taxed, over-stimulated, over-worked, over-caffeinated culture. People push themselves to the absolute limit before even thinking of making a change. Of course we have physical and emotional burn out, and our bodies are merely showing us that something is very out of balance when various conditions arise. Treating THIS root cause (the mental, emotional and spiritual) would really be fantastic, because we are complex creatures -- not just physical bodies. But any step in the right direction is a good one, just don't forget mental and emotional health too. It's all connected.

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Haha. I assume all people with long illnesses are in therapy. hope so anyway. Lol except for financial and insurance reasons, doing long term chronic illness alone is not necessary.

Yes find a good therapist to help you. A dr told me once "its not possible to live in constant pain or fatique or life affecting illnesses and not be depressed." So yes. Whole body. LDN for inflammation which I think inflammation of the brain contributes to depression too. So many things.

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diverdown1 | @diverdown1 | Apr 20 8:21am

Hi, I have already commented on LDN, but I feel the need to comment here as I am not sure what thread on which I commented. I started LDN because I was absolutely desperate to feel better. I take 3 mg a day and it does help. As a recovery alcoholic/addict of 6 years, I was familiar with Naltrexone as I took it years ago in the form of Suboxone for withdrawal. It is buprenorphine and naltrexone. It was absolutely the worst withdrawal I ever had coming off Suboxone, so I was hesitant to try the LDN. The dosage difference is VERY different, as you pointed out. The LDN has helped a lot. I do feel bad initially when I wake up, but that has been going on for over 2 years. I am slowly getting better, however, mostly my complaints now are fatgiue, PEM, tinnitus, taste and smell and brain fog. Thank you for posting this.

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denglish19 | @denglish19 | Apr 30 3:47pm
In reply to @bebold "Haha. I assume all people with long illnesses are in therapy. hope so anyway. Lol except..." + (show)
@bebold

Haha. I assume all people with long illnesses are in therapy. hope so anyway. Lol except for financial and insurance reasons, doing long term chronic illness alone is not necessary.

Yes find a good therapist to help you. A dr told me once "its not possible to live in constant pain or fatique or life affecting illnesses and not be depressed." So yes. Whole body. LDN for inflammation which I think inflammation of the brain contributes to depression too. So many things.

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Appreciate your response but I healed long Covid long ago! Like 2 years ago... And whenever I get re-exposed (which I can feel pretty quickly), I know exactly what to do. But I certainly hope others are finding the information that they need. MANY of us have recovered...

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2 replies
c1john | @c1john | May 1 12:36pm
In reply to @lkirnbauer "I’m so sorry you’re struggling. I too am struggling, but with no taste or smell for..." + (show)
@lkirnbauer

I’m so sorry you’re struggling. I too am struggling, but with no taste or smell for going on 1 year and 4 months! After Covid in December of 2022 I lost my taste and smell. I’ve had 2 Stellate Ganglion Block injections to help me regain it, but only a slight improvement. I’ll be going in this Wednesday for my 3rd. It’s the only thing that is giving me hope. It’s very depressing and I too think about ending it. I also have several food sensitivities and have had 18” of my colon resected in April of 2022, so I don’t eat the way I use to. I keep going, but it really is a constant battle to stay positive as you said. I was not given Paxlovid, but the doctor who didn’t prescribe it for me was not my regular doctor as he was not available. I did ask my Dr recently if he would have prescribed it for me and he said he would have treated me with Paxlovid. So now I’m wondering if I had been treated with Paxlovid, would I have lost my taste and smell for this long of a period. I will never know!🤷‍♀️ I wish you strength to go on and hope you find some relief.

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Hi, I am struggling with a no taste and smell too since I got it in September 2023! If it is any constellation prize, I took Paxlovid.
I was deathly ill for 3 weeks with every symptom and more. The "no taste" thing really depresses me, as I am a cook and a foodie but it has altered my body. For example, Certain things taste weird and others the texture is off -putting. Shrimp is off my list-taste wise the texture is funky. Eggs-no taste-similar to eating cardboard. Corn-doesnt digest well. Some chicken-almost has a bland cardboard meat taste. I used to eat Kimchi a lot and now I cant-the texture puts me off. etc, etc. So I feel your pain @lkirnbauer

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c1john | @c1john | May 1 12:38pm
In reply to @bonniefielding "I started NP's in January (1/2 patch every 24 hrs) after 3 days I started feeling..." + (show)
@bonniefielding

I started NP's in January (1/2 patch every 24 hrs) after 3 days I started feeling better. I have been through this for 2 yrs and finally got back to 90% better - this is a game changer people.....what do you have to lose? I went into it with that in mind and low and behold - I'm better.

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@bonniefielding did you start with 7 or 14 mg?

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1 reply
lbyrd02 | @lbyrd02 | May 2 8:25am

I believe this post started in September 2022 - not a lot has happened since - particularly in the area of care. Caught what I think was Cobid on May 5th, 2022 - One week after I think my third booster. Tested positive (Home Test) every Monday, Wednesday and Friday for 4 weeks and developed the Long Covid Symptoms during that month. Pain in my right hip joint (replaced Joint) so bad I could not walk. I have yet to sleep more than 3 hours since I tested positive, I stumble around like a drunk sailor, I am currently in my first two year long headache and good news the Bison are coming back - I know cause a huge herd grazes in my mouth every night and from the amount of crap they leave on my covid tongue each morning - they are eating well. I have also learned from the medical field that they are not interested in the least bit about the patients - "

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lkirnbauer | @lkirnbauer | May 2 9:53am
In reply to @denglish19 "Appreciate your response but I healed long Covid long ago! Like 2 years ago... And whenever..." + (show)
@denglish19

Appreciate your response but I healed long Covid long ago! Like 2 years ago... And whenever I get re-exposed (which I can feel pretty quickly), I know exactly what to do. But I certainly hope others are finding the information that they need. MANY of us have recovered...

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I’d be curious how you recovered? Was it just time? It would be wonderful for you to share that information. Thanks! I’m really happy you’ve recovered!

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