Long COVID Treatment/Studies
November 28, 2024 5:57 PM Subscribe
My parents have severe long COVID and no energy to fight for treatment. I am desperate to find something that would give them just a little relief, especially because my mom was already somewhat informed prior to catching COVID. Help?
Medicine has largely failed my parents and they are exhausted from trying to find resources to address their long COVID symptoms. Day to day tasks are an immense struggle, and I honestly do not know how they're surviving. My dad insists that he has researched options to high heaven. Surely there are studies? Or tests? I also have long COVID but my symptoms are much less severe and mostly consist of sudden extreme bouts of fatigue and memory loss. I feel like I'm watching them die in real time because of all this. Please advise.
Medicine has largely failed my parents and they are exhausted from trying to find resources to address their long COVID symptoms. Day to day tasks are an immense struggle, and I honestly do not know how they're surviving. My dad insists that he has researched options to high heaven. Surely there are studies? Or tests? I also have long COVID but my symptoms are much less severe and mostly consist of sudden extreme bouts of fatigue and memory loss. I feel like I'm watching them die in real time because of all this. Please advise.
I don’t have specific studies to direct you to, but in general I have had good luck finding very specific health information by finding the associated community on Reddit.
posted by mai at 8:24 PM on November 28 [1 favorite]
posted by mai at 8:24 PM on November 28 [1 favorite]
I have been part of a support group for a friend with severe long Covid. There are a lot of people trying to figure it out, but from what I have seen there are not yet any answers or replicable treatments.
Many major medical centers in the US will have a long Covid clinic. Often this is someone in an ombudsmen role who will direct you to various specialists who have experience working with long Covid patients and to support groups. Even if there is not an immediate treatment, it is good to get connected to these resources.
Short of a cure, some doctors and clinics will have suggestions for treating the symptoms of long Covid, eg techniques or medications for addressing the fatigue or lifestyle adjustments.
Good luck to your parents amd you. It is a terrible place to be, but take solace in the fact that you are not alone. A significant percentage of the population is dealing with this, and many doctors and researchers are trying to figure it out.
posted by Winnie the Proust at 8:25 PM on November 28 [2 favorites]
Many major medical centers in the US will have a long Covid clinic. Often this is someone in an ombudsmen role who will direct you to various specialists who have experience working with long Covid patients and to support groups. Even if there is not an immediate treatment, it is good to get connected to these resources.
Short of a cure, some doctors and clinics will have suggestions for treating the symptoms of long Covid, eg techniques or medications for addressing the fatigue or lifestyle adjustments.
Good luck to your parents amd you. It is a terrible place to be, but take solace in the fact that you are not alone. A significant percentage of the population is dealing with this, and many doctors and researchers are trying to figure it out.
posted by Winnie the Proust at 8:25 PM on November 28 [2 favorites]
UCSF GRAND ROUNDS ON LONG COVID This is a You Tube clip of four doctors having a discussion about the latest clinical research on Long Covid. Three of the doctors specialize in working with populations that have been experience Long Covid, and are considered leading experts. The fourth doctor Robert Wachter is Chief of the Patient program at UCSF, so a very respected and experienced doctor. The talk is a few months old, but you should be able to follow the studies they mention or contact their clinics for the latest clinical information. I hope you find some useful information.
posted by effluvia at 8:31 PM on November 28 [3 favorites]
posted by effluvia at 8:31 PM on November 28 [3 favorites]
I highly recommend exploring mind body medicine. This is NOT woo but is based in neuroscience. Check out the podcasts/YouTube of Nicole Sachs, Raelan Agle, Rebecca Tolin, Dan Buglio. Also read Sarah Polley's book Run Toward the Danger - she applied the same principles that were recommended to her by a doctor at UPMC in Pittsburgh to cure her post-concussion syndrome. She is an Academy award winning screenwriter and her story is very compelling.
Even if you are skeptical (I was very much at first), when you have a debilitating chronic condition you get to a point where you literally have nothing left to lose and there is no downside to looking into it.
posted by Mallenroh at 10:11 PM on November 28
Even if you are skeptical (I was very much at first), when you have a debilitating chronic condition you get to a point where you literally have nothing left to lose and there is no downside to looking into it.
posted by Mallenroh at 10:11 PM on November 28
a lot of long covid symptoms are literally brain damage and thus substances that encourage the brain to generate new pathways can help route around that damage:
https://time.com/6271806/psychedelics-long-covid-treatment/
posted by Jacqueline at 10:21 PM on November 28 [1 favorite]
https://time.com/6271806/psychedelics-long-covid-treatment/
posted by Jacqueline at 10:21 PM on November 28 [1 favorite]
I know several people with Long COVID who have benefited from low dose Nolexone. I believe this has become one of the standards of care at Long COVID clinics. Let us know if we can help you locate the nearest clinics to your parents.
posted by hydropsyche at 3:53 AM on November 29 [1 favorite]
posted by hydropsyche at 3:53 AM on November 29 [1 favorite]
This week's edition of Violet Blue's weekly COVID newsletter links to this Nov. 27th article on Long COVID treatments.
posted by amk at 5:12 AM on November 29 [4 favorites]
posted by amk at 5:12 AM on November 29 [4 favorites]
Get them household help so they have good food, a reasonably clean and safe house. Ideally get a nurse to visit weekly to document symptoms and help navigate their health care system. Get juice, tea, cough drops/meds, fruit, frozen meals and froz veg delivered. Make sure they have a pule-ox meter handy, and document on a calendar. This is palliative, but may help convince health care staff. I'm so sorry you're all going through this.
posted by theora55 at 11:59 AM on November 29 [1 favorite]
posted by theora55 at 11:59 AM on November 29 [1 favorite]
Some of my friends with Long COVID have improved using ME/CFS and MCAS protocols:
- Low dose naltrexone to reduce chronic pain and modulate the immune system
- Drugs to improve brain fog and reduce neuroinflammation (such as loratadine, cromolyn sodium, ketotifen, quercetin, montelukast)
- Some SSRIs and SNRIs can also help reduce pain, anxiety, and depression (which can also be physical symptoms!)
I suspect sensitization can start to play a role in pain as illness lingers. This explainer on fibromyalgia might also be useful for putting diagnostic and treatment options in perspective, as Long COVID is similarly complex and poorly understood. Unfortunately, a lot of times we're just throwing things at a wall to see what sticks.
posted by lloquat at 2:19 PM on November 29 [6 favorites]
- Low dose naltrexone to reduce chronic pain and modulate the immune system
- Drugs to improve brain fog and reduce neuroinflammation (such as loratadine, cromolyn sodium, ketotifen, quercetin, montelukast)
- Some SSRIs and SNRIs can also help reduce pain, anxiety, and depression (which can also be physical symptoms!)
I suspect sensitization can start to play a role in pain as illness lingers. This explainer on fibromyalgia might also be useful for putting diagnostic and treatment options in perspective, as Long COVID is similarly complex and poorly understood. Unfortunately, a lot of times we're just throwing things at a wall to see what sticks.
posted by lloquat at 2:19 PM on November 29 [6 favorites]
The Long Covid Treatments section of this page summarizes a bunch of research studies on long covid treatments
https://covidbc.webfoot.com/therapies/
posted by congen at 6:32 AM on November 30
https://covidbc.webfoot.com/therapies/
posted by congen at 6:32 AM on November 30
I also really liked this recent review of where we’re at with understanding long covid mechanisms and what that suggests for treatment
https://onlinelibrary.wiley.com/doi/full/10.5694/mja2.52517
In short, viral persistence may be the underlying issue, so recommendations include keeping up with vaccinations, trying metformin for its antiviral properties, and getting supportive treatment for symptoms like POTS.
posted by congen at 9:58 AM on December 1
https://onlinelibrary.wiley.com/doi/full/10.5694/mja2.52517
In short, viral persistence may be the underlying issue, so recommendations include keeping up with vaccinations, trying metformin for its antiviral properties, and getting supportive treatment for symptoms like POTS.
posted by congen at 9:58 AM on December 1
Where do they live? There is a new center at Mt. Sinai in NYC, you can email for an appointment if you are a New York or New Jersey resident.
I've been trying the Visible app and heart rate tracker for chronic fatigue, it seems interesting so far.
posted by catquas at 10:33 AM on December 2
I've been trying the Visible app and heart rate tracker for chronic fatigue, it seems interesting so far.
posted by catquas at 10:33 AM on December 2
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But basically a ton of rest and letting my body shut down as much as it could. Constant naps too.
Sorry you're having to go through this too.
posted by Art_Pot at 7:30 PM on November 28 [2 favorites]