Long Covid Information and Therapies

[TCB]

Starting a thread so we can collect information here.

I don’t have long Covid but I am in a higher risk group for it, as a woman in my late 50s. It is a big reason I’m avoiding getting Covid as much as I can, so I’m very interested in everything you all know about it.

[Carol in Cal.]

I don’t have citations but have read (some time ago now) of folks recovering from long covid rather suddenly after receiving one of the older vaccines.  And I know two people that this happened to.  Not the boosters.  One of the two shot initial vaccine sequence.

[mommyoffive]

Long Covid Weekly: #23 - Long Covid Weekly Newsletter (substack.com)

[TCB]

14 hours ago, Carol in Cal. said:

I don’t have citations but have read (some time ago now) of folks recovering from long covid rather suddenly after receiving one of the older vaccines.  And I know two people that this happened to.  Not the boosters.  One of the two shot initial vaccine sequence.

I’ve heard of this happening. I think I’ve also heard of people having flares after vaccination too, so it would be so good to have a better understanding of who might benefit. I hope they are able to study these things quickly but I’m concerned that there isn’t the will to acknowledge what’s happening and fund research.

[Malory]

Dr. Mobeen Syed has a series of lectures on long covid on Youtube. He draws his own illustrations to go with his presentations. Here is one where he discusses a Canadian study on the effect antinuclear antibodies as predictors of long covid:

https://www.youtube.com/watch?v=ryN7fo4C5ss

[Acadie]

25% reduced risk of Long Covid with Paxlovid, possible mechanism may be preventing or reducing persistent viral reservoir: https://www.cidrap.umn.edu/news-perspective/2022/11/study-suggests-paxlovid-eases-long-covid-symptoms

With the high rate of rapid false negatives, it's important to repeat rapid testing every 24 or 48 hours if you have symptoms and test negative, or get a PCR. That way you can get Paxlovid in time, as long as you're not on meds where it's contraindicated.

Keep documentation of positive results, as proof of a positive test is required to access many Long COVID clinics and to qualify for disability. 

I wish we'd started acupuncture and Chinese medicine earlier with dd20. 

 

 

[BeachGal]

Nature Medicine article explaining the four phenotypes of Long Covid.

https://www.nature.com/articles/s41591-022-02116-3

Subphenotype 1 (cardiac and renal) consisted of 7,047 (33.75%) patients. It was dominated by cardiac-related, renal-related and circulation-related topics (T3, T8 and T10), including cardiac and circulatory conditions, renal failure, anemia and fluid and electrolyte disorders. Compared to other subphenotypes, patients in this subphenotype were older (median age, 65.0 years, IQR (52.0–75.0)) and had the highest proportion of males (48.53%). The patients also had a higher acute severity of COVID-19 (with the highest rate of hospitalization (61.15%), use of mechanical ventilation (4.81%) and critical care services (9.95%)). This subphenotype had the highest proportion of patients (37.38%) infected with SARS-CoV-2 during the first wave of the pandemic (March–June 2020). Patients in this subphenotype had a higher burden of pre-existing conditions than other subphenotypes, especially for blood, circulation and endocrine comorbidities, as well as a high level of incident prescriptions of medications for treating circulatory and endocrine conditions and anemia.

Subphenotype 2 (respiratory, sleep and anxiety) included 6,838 (32.75%) patients. It was dominated by respiratory conditions (topics T4, T7 and T9), sleep disorders, anxiety and symptoms such as headache and chest pain. This subphenotype had patients with a median age of 51.0 years (IQR (35.0–64.0)), female representation of 62.8% and hospitalization rate of 31.28% during the acute SARS-CoV-2 infection phase. It had the largest proportion of patients who tested positive for SARS-CoV-2 from November 2020 to November 2021 (64.47%). Patients in this subphenotype had higher baseline comorbidity burdens for respiratory conditions, such as upper respiratory sequelae and chronic obstructive pulmonary disease. These patients were associated with higher incident prescription rates for anti-asthma, anti-allergy and anti-inflammatory medications, including inhaled steroids, levalbuterol and montelukast.

Subphenotype 3 (musculoskeletal and nervous) consisted of 4,879 (23.37%) patients who mainly had musculoskeletal and nervous system sequelae (topics T1, T5 and T6), such as musculoskeletal pain, headaches and sleep-wake disorders. This subphenotype included patients with a median age of 57.0 years (IQR (42.0–69.0)), and 60.71% were female. It had the highest proportion of patients with more than five outpatient visits before SARS-CoV-2 infection (78.4%) and higher baseline comorbidity burdens of autoimmune and allergy conditions, such as rheumatoid arthritis and asthma, as well as other musculoskeletal and nervous system conditions, including soft tissue, bone and sleep disorders. This subphenotype was associated with more incident prescriptions for pain medications (for example, ibuprofen and ketorolac).

Subphenotype 4 (digestive and respiratory) included 2,117 (10.14%) patients mainly with digestive system and respiratory conditions (topics T2, T4 and T8). Patients in this subphenotype had a median age of 54.0 years (IQR (39.0–67.0)), 61.64% female, the highest rates of zero baseline emergency visits (57.06%) as well as the lowest rates of mechanical ventilation (0.8%) and critical care admission (2.79%) in the acute phase of SARS-CoV-2 infection. Compared to other subphenotypes, Subphenotype 4 had a lower overall burden of underlying conditions but a slightly higher prevalence of digestive system conditions, such as hematemesis, stomach and duodenum disorders and digestive system neoplasm, and more incident prescription digestive system medications.

[BeachGal]

For some of the cardiovascular-related problems after Covid, Dr. David Systrom and Dr. Wenzhong Xiao use an invasive cardiac test -- invasive Cardiopulmonary Exercise Test, iCPET or CPET -- to determine the flow of blood, whether it's low or high, and once that is known, they have developed treatments. One of them is increasing the neurotransmitter acetylcholine which helps the tissue surrounding arteries to pump blood through. The other is a drug in development to help treat mitochondria. Which one will help depends on whether a person is low or high flow.

The video loses sound throughout, so you'll want to read the transcript.

https://www.omf.ngo/may-momentum-tuesdays-2022-interview-transcript-with-david-systrom-md/

[BeachGal]

Another person to watch is Dr. Bruce Patterson. He has analyzed the blood of thousands of long haulers using AI and developed a panel of tests -- IncellDX -- to determine what is going on. His belief is that what is causing LC are remnants of the virus, the spike protein, which are capable of "hiding" in long-living monocytes that are difficult to destroy and cause a lot of damage. (The spike protein is worth reading about.) Patterson uses an antiviral called Maraviroc (and sometimes others) and also a statin for up to three months. I think he's worth following as well.

Edited December 6, 2022 by BeachGal

[Lawyer&Mom]

2 hours ago, BeachGal said:

Nature Medicine article explaining the four phenotypes of Long Covid.

https://www.nature.com/articles/s41591-022-02116-3

Subphenotype 1 (cardiac and renal) consisted of 7,047 (33.75%) patients. It was dominated by cardiac-related, renal-related and circulation-related topics (T3, T8 and T10), including cardiac and circulatory conditions, renal failure, anemia and fluid and electrolyte disorders. Compared to other subphenotypes, patients in this subphenotype were older (median age, 65.0 years, IQR (52.0–75.0)) and had the highest proportion of males (48.53%). The patients also had a higher acute severity of COVID-19 (with the highest rate of hospitalization (61.15%), use of mechanical ventilation (4.81%) and critical care services (9.95%)). This subphenotype had the highest proportion of patients (37.38%) infected with SARS-CoV-2 during the first wave of the pandemic (March–June 2020). Patients in this subphenotype had a higher burden of pre-existing conditions than other subphenotypes, especially for blood, circulation and endocrine comorbidities, as well as a high level of incident prescriptions of medications for treating circulatory and endocrine conditions and anemia.

Subphenotype 2 (respiratory, sleep and anxiety) included 6,838 (32.75%) patients. It was dominated by respiratory conditions (topics T4, T7 and T9), sleep disorders, anxiety and symptoms such as headache and chest pain. This subphenotype had patients with a median age of 51.0 years (IQR (35.0–64.0)), female representation of 62.8% and hospitalization rate of 31.28% during the acute SARS-CoV-2 infection phase. It had the largest proportion of patients who tested positive for SARS-CoV-2 from November 2020 to November 2021 (64.47%). Patients in this subphenotype had higher baseline comorbidity burdens for respiratory conditions, such as upper respiratory sequelae and chronic obstructive pulmonary disease. These patients were associated with higher incident prescription rates for anti-asthma, anti-allergy and anti-inflammatory medications, including inhaled steroids, levalbuterol and montelukast.

Subphenotype 3 (musculoskeletal and nervous) consisted of 4,879 (23.37%) patients who mainly had musculoskeletal and nervous system sequelae (topics T1, T5 and T6), such as musculoskeletal pain, headaches and sleep-wake disorders. This subphenotype included patients with a median age of 57.0 years (IQR (42.0–69.0)), and 60.71% were female. It had the highest proportion of patients with more than five outpatient visits before SARS-CoV-2 infection (78.4%) and higher baseline comorbidity burdens of autoimmune and allergy conditions, such as rheumatoid arthritis and asthma, as well as other musculoskeletal and nervous system conditions, including soft tissue, bone and sleep disorders. This subphenotype was associated with more incident prescriptions for pain medications (for example, ibuprofen and ketorolac).

Subphenotype 4 (digestive and respiratory) included 2,117 (10.14%) patients mainly with digestive system and respiratory conditions (topics T2, T4 and T8). Patients in this subphenotype had a median age of 54.0 years (IQR (39.0–67.0)), 61.64% female, the highest rates of zero baseline emergency visits (57.06%) as well as the lowest rates of mechanical ventilation (0.8%) and critical care admission (2.79%) in the acute phase of SARS-CoV-2 infection. Compared to other subphenotypes, Subphenotype 4 had a lower overall burden of underlying conditions but a slightly higher prevalence of digestive system conditions, such as hematemesis, stomach and duodenum disorders and digestive system neoplasm, and more incident prescription digestive system medications.

I haven’t seen a phenotype study that impresses me yet. (And I’ve seen several.)  I know too many people with significant symptoms that straddle multiple categories.  I had crushing anxiety and major digestive issues.  (Lost 25% of my body weight.)  Was I type 2 or type 4?  I’m glad people are trying to make sense of LongCovid, but I would take these studies with several grains of salt.  We are still very much in the blind men describing an elephant stage here.  

[Acadie]

57 minutes ago, Lawyer&Mom said:

I haven’t seen a phenotype study that impresses me yet. (And I’ve seen several.)  I know too many people with significant symptoms that straddle multiple categories.  I had crushing anxiety and major digestive issues.  (Lost 25% of my body weight.)  Was I type 2 or type 4?  I’m glad people are trying to make sense of LongCovid, but I would take these studies with several grains of salt.  We are still very much in the blind men describing an elephant stage here.  

I feel the same way--dd's symptoms don't fit into a single category.

We need research on treatments, not a decade shifting people among different buckets. 

One starting point would be what we already know about ME/CFS and other illnesses with similar symptoms as LC. The research on endothelial and vascular damage in unmanaged diabetes, for example, might give leads for potential LC treatments, along with efficacy and safety. 

[Spy Car]

6 hours ago, BeachGal said:

Another person to watch is Dr. Bruce Patterson. He has analyzed the blood of thousands of long haulers using AI and developed a panel of tests -- IncellDX -- to determine what is going on. His belief is that what is causing LC are remnants of the virus, the spike protein, which are capable of "hiding" in long-living monocytes that are difficult to destroy and cause a lot of damage. (The spike protein is worth reading about.) Patterson uses an antiviral called Maraviroc (and sometimes others) and also a statin for up to three months. I think he's worth following as well.

Oh dear. Please be very careful dealing with this guy. He has serially taken advantage of patients with very expensive lab tests (at the lab he owns) and "unorthodox" treatments like ivermectin that lack a scientific basis. 

Hugely controversial figure, to put it mildly.

Bill

[BeachGal]

6 hours ago, Lawyer&Mom said:

I haven’t seen a phenotype study that impresses me yet. (And I’ve seen several.)  I know too many people with significant symptoms that straddle multiple categories.  I had crushing anxiety and major digestive issues.  (Lost 25% of my body weight.)  Was I type 2 or type 4?  I’m glad people are trying to make sense of LongCovid, but I would take these studies with several grains of salt.  We are still very much in the blind men describing an elephant stage here.  

It seems possible that people can straddle multiple phenotypes at the same or different times. What is important about this data is that they are seeking and acknowledging that symptoms of LC are legitimate instead of gaslighting patients as they’ve done for years with those who have ME/CFS. Some still are not acknowledging that LC has a genuine physical cause, though. Unfortunately.

These are initial data-driven findings (pre Omicron) but with limitations mentioned later in the article. It’s only the beginning and isn’t perfect but is much better than telling sufferers they are “neurotic and physically deconditioned” and simply need to get back to their lives.

[BeachGal]

1 hour ago, Spy Car said:

Oh dear. Please be very careful dealing with this guy. He has serially taken advantage of patients with very expensive lab tests (at the lab he owns) and "unorthodox" treatments like ivermectin that lack a scientific basis. 

Hugely controversial figure, to put it mildly.

Bill

Patterson is definitely controversial but there are LC sufferers who are using his Incelldx test to gauge what is happening and then finding the treatment — Maraviroc or another anti-viral and a statin — helps their symptoms dissipate. The test is around $500. Maraviroc out of pocket is expensive but can be reduced. Then the cost of the statin. 
 

Cornell University recent research on monocytes driving ME/CFS similar to Patterson’s theory that monocytes (monocytes containing spike protein remnants) are doing something similar in LC.

https://www.healthrising.org/blog/2022/11/13/monocytes-real-problem-chronic-fatigue-syndrome/

https://www.biorxiv.org/content/biorxiv/early/2022/10/17/2022.10.13.512091.full.pdf (still a preprint as of yet)

Edited December 6, 2022 by BeachGal

[Spy Car]

27 minutes ago, BeachGal said:

Patterson is definitely controversial but there are LC sufferers who are using his Incelldx test to gauge what is happening and then finding the treatment — Maraviroc or another anti-viral and a statin — helps their symptoms dissipate. The test is around $500. Maraviroc out of pocket is expensive but can be reduced. Then the cost of the statin. 
 

Cornell University recent research on monocytes driving ME/CFS similar to Patterson’s theory that monocytes (monocytes containing spike protein remnants) are doing something similar in LC.

https://www.healthrising.org/blog/2022/11/13/monocytes-real-problem-chronic-fatigue-syndrome/

https://www.biorxiv.org/content/biorxiv/early/2022/10/17/2022.10.13.512091.full.pdf (still a preprint as of yet)

The first tests are relatively inexpensive (at $500). Then Patterson bleeds people financially with follow up tests and treatments. Sick and desperate people who can ill afford the costs, which are not covered by insurance--because his treatments are not evidence-based.

Also, Health Rising is a notorious anti-science website that posts disinformation and quack claims around ME/CFS. It is not a credible source in the slightest.

Becare with these recommendations. Patterson has burned so many people.

Bill

 

 

[BeachGal]

Fair enough. And for full disclosure from the LC accounts I’ve read, not all do well with Patterson’s protocol of maraviroc and statin but some do.

Iirc, Bill, you’ve worked on a documentary (I think) of people who have ME/CFS and have some knowledge of it. I added the Health Rising article because it discusses in layman’s terms the Cornell research on the role of certain monocytes and ME/CFS which I don’t think is pseudoscience. ME/CFS has similarities to LC. I think it’s possible that long-living, spike-containing monocytes may be playing a role in LC and there seems to be evidence for it. The link below from July 2022 discusses these lingering Covid spike protein remnants.

https://www.scientificamerican.com/article/people-with-long-covid-may-still-have-spike-proteins-in-their-blood1/

[Spy Car]

40 minutes ago, BeachGal said:

Fair enough. And for full disclosure from the LC accounts I’ve read, not all do well with Patterson’s protocol of maraviroc and statin but some do.

Iirc, Bill, you’ve worked on a documentary (I think) of people who have ME/CFS and have some knowledge of it. I added the Health Rising article because it discusses in layman’s terms the Cornell research on the role of certain monocytes and ME/CFS which I don’t think is pseudoscience. ME/CFS has similarities to LC. I think it’s possible that long-living, spike-containing monocytes may be playing a role in LC and there seems to be evidence for it. The link below from July 2022 discusses these lingering Covid spike protein remnants.

https://www.scientificamerican.com/article/people-with-long-covid-may-still-have-spike-proteins-in-their-blood1/

I also believe that at least a cohort of people (those who experience what's called PEM or "post-exertional malaise," which means that they "crash" or experience an exacerbation of symptoms upon exertion (or "overdoing it) who have LC do have ME/CFS. The overlapping similarities of these two post-viral illnesses is strong.

And I agree that the role of cytokine storms and whatnot in ME/CFS is not inherently pseudo-science. That said, Cort Johnson who runs Health Rising, has promoted every quack "cure" under the sun. There is no discretion or healthy-skepticism there. And the misinformation has done people harm. Both to their health and their pocketbooks.

Beware of these sources. 

Bill

[PeterPan]

Ironically, I was just watching a video on youtube (which I can't find now) where this doctor was going through some study that he thought was super thorough showing that long covid doesn't exist. Nevermind I'm still taking meds for it, haha, but it doesn't exist.

I think if you've already had the shots and not been made sick by them and have likely had exposure to covid (most have by this point) and not gotten sick or only assymptomatically, you're probably fine. I've had it multiple times now despite vaxes. Had a rebound after paxlovid. As someone who is VERY prone to the inflammation and side effects of covid (and the shots), I personally think that the best way to prevent long covid is to do paxlovid and follow it up immediately with good stiff doses of the drug the FDA now says it never said we should not be taking, snort. The latter drug alone is not enough and the former can't prevent a rebound. So if I ever get this accursed disease again, that's what I'm doing.

It's shocking to me to meet people who are being given the run around by doctors for their long covid symptoms. It's very basic at th root--inflammation. So you treat the inflammation wherever it decides in your body to get inflamed. For me, it's usually old injuries, so prior concussions, joint/tissue damage, etc. My lungs get really bad and need extra strong inhalers. Rounds of antibiotics, prednisone, meds that cross the blood brain barrier to take down inflammation. The list/protocol is all easily available by googling. It works. It just takes time to recover when you have really nasty rounds and get your body that inflamed. They've put me on some meds to try to strengthen my immune system (which I didn't realize could be done) so I don't get it again so readily. We'll see. 

But like I said, if you haven't had an issue by this point, you may be lucky and do fine. Sometimes the ones who have issues aren't the people you'd expect.

And yes, mushrooms, oatmeal, etc., anything to promote autophagy=body clearing out that stupid spike protein.

[BeachGal]

This MedCram video by Dr. Seheult explains how getting sunlight exposure or using a near-infrared (NIR) light can ramp down inflammation caused by spike protein.

Infrared Light Neutralizes Spike Toxicity

https://youtu.be/e6xj14QYsoc

If you’re interested, Hooga makes a small near-infrared and red light panel that’s about $200. They're located in Wisconsin. I use both a Joovv and a Hooga and also a device for my eyes, approved by my retina doctor, who is a researcher. It’s easy to do and short 3-5” sessions are ideal so not too time consuming.

[BeachGal]

@PeterPan

Sorry about your Covid battles. You might want to check out this liver drug.

https://www.medscape.com/viewarticle/984993?src=WNL_trdalrt_pos1_221206&uac=428738CV&impID=4955052

Also, if you have CVS nearby, see if they have any NanoBio Protect nasal antiseptic. It’s hard to get now but you might get lucky.

Edited December 7, 2022 by BeachGal
correction

[Harriet Vane]

7 hours ago, BeachGal said:

This MedCram video by Dr. Seheult explains how getting sunlight exposure or using a near-infrared (NIR) light can ramp down inflammation caused by spike protein.

Infrared Light Neutralizes Spike Toxicity

https://youtu.be/e6xj14QYsoc

If you’re interested, Hooga makes a small near-infrared and red light panel that’s about $200. They're located in Wisconsin. I use both a Joovv and a Hooga and also a device for my eyes, approved by my retina doctor, who is a researcher. It’s easy to do and short 3-5” sessions are ideal so not too time consuming.

I’m interested in the device for your eyes. Is it a specific SAD light?

[BeachGal]

2 hours ago, Harriet Vane said:

I’m interested in the device for your eyes. Is it a specific SAD light?

It’s called EyePower Red. It’s a pair of “glasses” that has a light source embedded where the lenses would be. You can’t see out of them. The light shines toward the eyes when you put the glasses on. It uses a specific wavelength, 670nm, at a low intensity that has been shown to help keep mitochondria in the retina healthy (photobiomodulation, PBM). A session is about 3” and you only have to do it about once a week. It’s safe.

https://eye-power.co.uk/

The studies were done at University College of London and Moorfields Eye Hospital. They have some little blurbs about them in the link.

Regarding SAD, even though the light is low intensity, I think it would be bright enough to use for that. It’s best to keep PBM sessions shorter, just because that’s when optimal cellular responses are seen. But, less time is better!

[mommyoffive]

Nearly half of COVID patients worldwide still have symptoms after 4 months, according to a giant new study (msn.com)

[Malory]

Long covid study on children and young adults ages 11-17:

https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(22)00250-2/fulltext

Summary

Background

Despite high numbers of children and young people (CYP) having acute COVID, there has been no prospective follow-up of CYP to establish the pattern of health and well-being over a year following infection.

Methods

A non-hospitalised, national sample of 5086 (2909 SARS-COV-2 Positive; 2177 SARS-COV-2 Negative at baseline) CYP aged 11–17 completed questionnaires 6- and 12-months after PCR-tests between October 2020 and March 2021 confirming SARS-CoV-2 infection (excluding CYP with subsequent (re)infections). SARS-COV-2 Positive CYP was compared to age, sex and geographically-matched test-negative CYP.

Findings

Ten of 21 symptoms had a prevalence less than 10% at baseline, 6- and 12-months post-test in both test-positives and test-negatives. Of the other 11 symptoms, in test-positives who had these at baseline, the prevalence of all symptoms declined greatly by 12-months. For CYP first describing one of these at 6-months, there was a decline in prevalence by 12-months. The overall prevalence of 9 of 11 symptoms declined by 12-months. As many CYP first described shortness of breath and tiredness at either 6- or 12-months, the overall prevalence of these two symptoms in test-positives appeared to increase by 6-months and increase further by 12-months. However, within-individual examination demonstrated that the prevalence of shortness of breath and tiredness actually declined in those first describing these two symptoms at either baseline or 6-months. This pattern was also evident for these two symptoms in test-negatives. Similar patterns were observed for validated measures of poor quality of life, emotional and behavioural difficulties, poor well-being and fatigue. Moreover, broadly similar patterns and results were noted for the sub-sample (N = 1808) that had data at baseline, 3-, 6- and 12-months post-test.

[mommyoffive]

How I recovered from Long Covid using venous blood gas testing. (substack.com)

Two years into the pandemic, long COVID patients are suffering : NPR

Five months post-covid, Nicole Murphy’s heart rate is still doing strange things - The Washington Post

[Halftime Hope]

 

On 12/6/2022 at 10:29 PM, PeterPan said:

Ironically, I was just watching a video on youtube (which I can't find now) where this doctor was going through some study that he thought was super thorough showing that long covid doesn't exist. Nevermind I'm still taking meds for it, haha, but it doesn't exist.

I think if you've already had the shots and not been made sick by them and have likely had exposure to covid (most have by this point) and not gotten sick or only assymptomatically, you're probably fine. I've had it multiple times now despite vaxes. Had a rebound after paxlovid. As someone who is VERY prone to the inflammation and side effects of covid (and the shots), I personally think that the best way to prevent long covid is to do paxlovid and follow it up immediately with good stiff doses of the drug the FDA now says it never said we should not be taking, snort. The latter drug alone is not enough and the former can't prevent a rebound. So if I ever get this accursed disease again, that's what I'm doing.

It's shocking to me to meet people who are being given the run around by doctors for their long covid symptoms. It's very basic at th root--inflammation. So you treat the inflammation wherever it decides in your body to get inflamed. For me, it's usually old injuries, so prior concussions, joint/tissue damage, etc. My lungs get really bad and need extra strong inhalers. Rounds of antibiotics, prednisone, meds that cross the blood brain barrier to take down inflammation. The list/protocol is all easily available by googling. It works. It just takes time to recover when you have really nasty rounds and get your body that inflamed. They've put me on some meds to try to strengthen my immune system (which I didn't realize could be done) so I don't get it again so readily. We'll see. 

But like I said, if you haven't had an issue by this point, you may be lucky and do fine. Sometimes the ones who have issues aren't the people you'd expect.

And yes, mushrooms, oatmeal, etc., anything to promote autophagy=body clearing out that stupid spike protein.

It was undoubtedly Vinay Prasad. He is either spot on or really wrong, in my experience.  LOL! The study was interesting but it is clearly missing those really suffering long-haul symptoms.

Edited December 9, 2022 by Halftime Hope

[PeterPan]

On 12/9/2022 at 3:13 PM, Halftime Hope said:

 

It was undoubtedly Vinay Prasad. He is either spot on or really wrong, in my experience.  LOL! The study was interesting but it is clearly missing those really suffering long-haul symptoms.

Yeah, that was him. He was pretty sure of himself, lol.

[BeachGal]

Medscape article about Long Covid and unusual microclots. (Eric Topol is the editor-in-chief of Medscape.) Article is three pages long and is easy to read and informative. You might have to register to read all of it.

ETA South Africa uses a triple anticoagulant therapy to break down the microclots. Germany and Turkey use HELP apharesis, which filters blood. What remains to be seen is if these microclots return and at least in some people they do. One theory is that it's the spike protein remnants that are causing the microclots and so, if true, getting rid of them would be important as well.
 

https://www.medscape.com/viewarticle/985271?_ga=2.158793977.2108651406.1670772209-1836351506.1670772203

Tiny, Menacing Microclots May Explain Long COVID’s Symptoms
 

When Hannah Davis saw the first visual confirmation of long COVID in her blood – a firework-like display of fluorescent green dots against a black background – she was overwhelmed with an odd sense of relief. In early November, she became one of the first U.S. long COVID patients to be tested for microscopic blood clots, catching up to South Africa, Germany, the U.K., and other countries that are already experimenting with related treatments. 

“It was validating,” says Davis, who excitedly shared the images of her clots on Twitter. “It's basically the first test specific to long COVID that is promising and scientifically sound and incorporates research from other post-viral illnesses.”

Davis donated her blood at Mount Sinai Hospital in New York City, with a few other founding members of the Patient-Led Research Collaborative, all of whom had been infected in the first wave of the pandemic and are still sick nearly 3 years later. Seeing the pictures of their blood clots, Davis and her fellow patients cried what she called happy tears. Then the reality of having those notorious blood clots sank in.

Early in the COVID-19 pandemic, emergency room doctors and others treating patients noticed the sickest produced excessive blood clots. The clots clogged kidney dialysis machines, caused strokes, and killed patients long after they left the hospital. Some long COVID researchers have suspected smaller, less obvious blood clots may be causing many of the puzzling symptoms reported by patients who have lasting effects of the virus.

The theory is that these weird and persistent clots, called microclots, might be blocking delicate blood vessels throughout the body, and stopping oxygen from getting to where it needs to go, causing everything from shortness of breath and organ damage to brain fog and debilitating fatigue. But if all the havoc is being done inside these minuscule clots, regular pathology tests won’t pick it up. A network of specialists is now setting out to see if specialized tests can be accessible and if the clots can be treated.

 

Edited December 11, 2022 by BeachGal

[mommyoffive]

Long Covid Weekly: #24 - Long Covid Weekly Newsletter (substack.com)

[Acadie]

23 hours ago, BeachGal said:

Medscape article about Long Covid and unusual microclots. (Eric Topol is the editor-in-chief of Medscape.) Article is three pages long and is easy to read and informative. You might have to register to read all of it.

ETA South Africa uses a triple anticoagulant therapy to break down the microclots. Germany and Turkey use HELP apharesis, which filters blood. What remains to be seen is if these microclots return and at least in some people they do. One theory is that it's the spike protein remnants that are causing the microclots and so, if true, getting rid of them would be important as well.
 

https://www.medscape.com/viewarticle/985271?_ga=2.158793977.2108651406.1670772209-1836351506.1670772203

Tiny, Menacing Microclots May Explain Long COVID’s Symptoms
 

When Hannah Davis saw the first visual confirmation of long COVID in her blood – a firework-like display of fluorescent green dots against a black background – she was overwhelmed with an odd sense of relief. In early November, she became one of the first U.S. long COVID patients to be tested for microscopic blood clots, catching up to South Africa, Germany, the U.K., and other countries that are already experimenting with related treatments. 

“It was validating,” says Davis, who excitedly shared the images of her clots on Twitter. “It's basically the first test specific to long COVID that is promising and scientifically sound and incorporates research from other post-viral illnesses.”

Davis donated her blood at Mount Sinai Hospital in New York City, with a few other founding members of the Patient-Led Research Collaborative, all of whom had been infected in the first wave of the pandemic and are still sick nearly 3 years later. Seeing the pictures of their blood clots, Davis and her fellow patients cried what she called happy tears. Then the reality of having those notorious blood clots sank in.

Early in the COVID-19 pandemic, emergency room doctors and others treating patients noticed the sickest produced excessive blood clots. The clots clogged kidney dialysis machines, caused strokes, and killed patients long after they left the hospital. Some long COVID researchers have suspected smaller, less obvious blood clots may be causing many of the puzzling symptoms reported by patients who have lasting effects of the virus.

The theory is that these weird and persistent clots, called microclots, might be blocking delicate blood vessels throughout the body, and stopping oxygen from getting to where it needs to go, causing everything from shortness of breath and organ damage to brain fog and debilitating fatigue. But if all the havoc is being done inside these minuscule clots, regular pathology tests won’t pick it up. A network of specialists is now setting out to see if specialized tests can be accessible and if the clots can be treated.

 

Really promising research. Dd20 is taking nattokinase, a supplement with an enzyme that is found in a traditional fermented food in Japan, to break down clots. Hard to say exactly what’s helping but trending better for her has correlated with taking it. Will swing back later to link to a pharmacist on Twitter posting surveys on efficacy of various treatments and supplements in people with LC. Super interesting to see what people report as helpful, harmful or no change. Nattokinase does seem to be helping many people. 

[BeachGal]

35 minutes ago, Acadie said:

Really promising research. Dd20 is taking nattokinase, a supplement with an enzyme that is found in a traditional fermented food in Japan, to break down clots. Hard to say exactly what’s helping but trending better for her has correlated with taking it. Will swing back later to link to a pharmacist on Twitter posting surveys on efficacy of various treatments and supplements in people with LC. Super interesting to see what people report as helpful, harmful or no change. Nattokinase does seem to be helping many people. 

That is so good to hear about your daughter, Acadie! I hope she will continue trending in a positive direction. 👍🏼

Nattokinase, lumbrokinase and serrapeptase are all capable of breaking down clots, internal scar tissue and biofilms. I have used all three on occasion for over a decade for certain health problems, such as Dupuytrens Contracture, and have found them to be very helpful.

Yes, I’d be very interested in following the pharmacist on Twitter. Thanks!

[Martha in GA]

43 minutes ago, BeachGal said:

Nattokinase, lumbrokinase and serrapeptase are all capable of breaking down clots, internal scar tissue and biofilms. I have used all three on occasion for over a decade for certain health problems, such as Dupuytrens Contracture, and have found them to be very helpful.

Sorry to hijack, but my dh has Dupuytrens Contracture and googling hasn't yielded anything helpful. Do you use all three for the DC, or is one better than the others? How helpful has it been? Does it just slow down the rate of the contractures, or does is actually reverse some of the damage? 

[Spryte]

3 hours ago, BeachGal said:

That is so good to hear about your daughter, Acadie! I hope she will continue trending in a positive direction. 👍🏼

Nattokinase, lumbrokinase and serrapeptase are all capable of breaking down clots, internal scar tissue and biofilms. I have used all three on occasion for over a decade for certain health problems, such as Dupuytrens Contracture, and have found them to be very helpful.

Yes, I’d be very interested in following the pharmacist on Twitter. Thanks!

Lumbrokinase completely changed my quality of life, post-Lyme and co-infections.
 

Interesting to see that those are helpful in LC, too, that’s great news!

[BeachGal]

4 hours ago, Martha in GA said:

Sorry to hijack, but my dh has Dupuytrens Contracture and googling hasn't yielded anything helpful. Do you use all three for the DC, or is one better than the others? How helpful has it been? Does it just slow down the rate of the contractures, or does is actually reverse some of the damage? 

I used serrapeptase after reading about it on a Dupey’s forum about seven years ago or so. The brand was Dr’s Best but I can’t recall the dose. It wasn’t huge, maybe 40,000 FUs (functional units) per day taken on an empty stomach or it will set to work digesting any food protein in the stomach. Took it for around 1.5 years, 4 days in a row followed by 3 days off. One nodule went away completely while the other is still there but very flat and small. Tendon stiffness also went away. No progression since I stopped taking it five years ago.

Lumbrokinase (Boluoke brand) might be a better choice because it’s less likely to cause a bleeding event. Nattokinase might be okay, too.

[BeachGal]

Here is a pharmacist on Sbstack discussing nattokinase, serrapeptase and lumbrokinase for LC. @Acadie is this the person you are following? She looks like a terrific resource.

https://pharmd.substack.com/p/frequency-asked-questions-nattokinase

[Acadie]

20 hours ago, BeachGal said:

Here is a pharmacist on Sbstack discussing nattokinase, serrapeptase and lumbrokinase for LC. @Acadie is this the person you are following? She looks like a terrific resource.

https://pharmd.substack.com/p/frequency-asked-questions-nattokinase

Yes, that's her--she's amazing! I so appreciate the expertise she brings to creating patient surveys and compiling data. She also summarizes available research on safety profile, efficacy etc. 

Here she is on Twitter: https://twitter.com/organichemusic

It is inspiring to see a groundswell of collaboration between people with LC, clinicians and researchers on Twitter and elsewhere. I've never seen such commitment to patient-lead research, drawing on the wisdom of people living with the illness to identify areas with potential promise and set priorities. 

Here's a thread on LC researchers, some of whom are involved in patient-lead research.

 

 

Edited December 13, 2022 by Acadie

[Acadie]

Long Covid, the lymphatic system and neurocognitive symptoms--this thread is really worth reading. Persuaded me to schedule craniosacral massage for dd. I remember Fauci referencing issues with drainage across the cribiform plate. 

 

[KSera]

I've been waiting for Akiko Iwasaki to join Mastodon so I could share her account, which is filled with good Long Covid research, but in the meantime, here's a good thread from Wes Ely, MD about Long Covid (includes some of Iwasaki's research):

https://med-mastodon.com/@WesElyMD/109509284278858564

 

Apologies that mastodon doesn't auto embed yet, but you should be able to read the whole thread by clicking through. Links to various studies.

[Ausmumof3]

https://www.abc.net.au/news/2022-12-21/long-covid-treatment-trial-drug-low-dose-naltrexone/101770626
 

Key points:

• Researchers will look at the effects of low-dose naltrexone on people with long COVID symptoms
• Griffith University in Queensland and Notre Dame University in Western Australia have teamed up for the trial 
• They plan to publish their findings late next year, or early 2024  

[KSera]

This is a preprint, so I don't want to put too much stock in it until it is peer reviewed, but it is hopeful enough that I wanted to share here. In a study where 1 of 3 different medications were administered for a period of time starting within 3 days of covid symptoms, those participants who received metformin had a 42% decrease in long covid compared to its blinded control group. (The other two medications tried--ivermectin and fluvoxamine showed no effect.)

Outpatient treatment of Covid-19 with metformin, ivermectin, and fluvoxamine and the development of Long Covid over 10-month follow-up

The effect persisted across all study subgroups:

In less good news, there was an 8.6% rate overall of long covid (defined as having been diagnosed with long covid by a medical provider by the 10 month mark). I still don't like those odds at all, though they are a little lower than in some other studies.

[busymama7]

On 12/20/2022 at 12:55 PM, Ausmumof3 said:

https://www.abc.net.au/news/2022-12-21/long-covid-treatment-trial-drug-low-dose-naltrexone/101770626
 

Key points:

• Researchers will look at the effects of low-dose naltrexone on people with long COVID symptoms
• Griffith University in Queensland and Notre Dame University in Western Australia have teamed up for the trial 
• They plan to publish their findings late next year, or early 2024  

I am on LDN and it really works for me.   I weaned off a bit while waiting for a refill and WOW that was bad news.   The daily flu like feeling came rushing back.  I started it about 8 months after COVID and it has been really good for me.  

[KSera]

16 minutes ago, busymama7 said:

I am on LDN and it really works for me.   I weaned off a bit while waiting for a refill and WOW that was bad news.   The daily flu like feeling came rushing back.  I started it about 8 months after COVID and it has been really good for me.  

Does it have any difficult side effects? While on it do you feel fairly normal or do you still have long Covid symptoms even on it?

[busymama7]

1 hour ago, KSera said:

Does it have any difficult side effects? While on it do you feel fairly normal or do you still have long Covid symptoms even on it?

No side effects at all.   I think some people say it can keep them up at night or something but I take it twice a day and I don't feel anything.   I do still have symptoms although I was much better at 18 months out. Mostly what's left is neurological and possibly low ferritin / anemia we're still investigating that.

[Acadie]

On 12/27/2022 at 2:43 PM, busymama7 said:

No side effects at all.   I think some people say it can keep them up at night or something but I take it twice a day and I don't feel anything.   I do still have symptoms although I was much better at 18 months out. Mostly what's left is neurological and possibly low ferritin / anemia we're still investigating that.

Dd had very low ferritin post Covid. My understanding is various iron levels can spike during the acute phase, then drop after. Getting her ferritin up made a huge difference for her but definitely didn’t resolve everything. 

[SoCal_Bear]

@Acadie @busymama7 @KSera @PeterPan @Lawyer&Mom Have no idea who else is dealing with LC issues that my brain has missed because I know there must be more. I so seldom come on the boards these days. Just don't have the energy because of the LC. Is there a place where boardies are having LC discussions or is it only here? Is there a group? There's hard-fought knowledge in these circles. I think boardies generally have been more thoughtful about discussions than what is out there in on social media. I am aware of the natto & LDN but haven't gone there yet. 

I have been getting a specialized reflexology treatment using Softwave Technology from a guy who flies into my area from ATL once a month and one of the areas they always treat is my lymphatic system which is always blocked up. It isn't cheap, but it is the only thing that has given serious symptom relief. Definitely not a cure, but I feel so much better.

Edited January 26, 2023 by calbear

[SoCal_Bear]

This piece from New Republic which basically makes the case that LC is psychosomatic.
https://publicherald.org/the-new-republic-has-long-covid-all-wrong/?fbclid=IwAR015CksYPbQxFHuOV1ZgKOMWHrASDrkpguZZEAMMdF7hCcixg7Y7awFf9s

This is the rebuttal piece that came out in response to it.

https://publicherald.org/the-new-republic-has-long-covid-all-wrong/?fbclid=IwAR015CksYPbQxFHuOV1ZgKOMWHrASDrkpguZZEAMMdF7hCcixg7Y7awFf9s

[Lawyer&Mom]

3 hours ago, calbear said:

@Acadie @busymama7 @KSera @PeterPan @Lawyer&Mom Have no idea who else is dealing with LC issues that my brain has missed because I know there must be more. I so seldom come on the boards these days. Just don't have the energy because of the LC. Is there a place where boardies are having LC discussions or is it only here? Is there a group? There's hard-fought knowledge in these circles. I think boardies generally have been more thoughtful about discussions than what is out there in on social media. I am aware of the natto & LDN but haven't gone there yet. 

I have been getting a specialized reflexology treatment using Softwave Technology from a guy who flies into my area from ATL once a month and one of the areas they always treat is my lymphatic system which is always blocked up. It isn't cheap, but it is the only thing that has given serious symptom relief. Definitely not a cure, but I feel so much better.

My best resource is the Body Politic LongCovid support group.  Very data driven.  A great group. 
 

https://www.wearebodypolitic.com/covid-19

[busymama7]

3 hours ago, calbear said:

@Acadie @busymama7 @KSera @PeterPan @Lawyer&Mom Have no idea who else is dealing with LC issues that my brain has missed because I know there must be more. I so seldom come on the boards these days. Just don't have the energy because of the LC. Is there a place where boardies are having LC discussions or is it only here? Is there a group? There's hard-fought knowledge in these circles. I think boardies generally have been more thoughtful about discussions than what is out there in on social media. I am aware of the natto & LDN but haven't gone there yet. 

I have been getting a specialized reflexology treatment using Softwave Technology from a guy who flies into my area from ATL once a month and one of the areas they always treat is my lymphatic system which is always blocked up. It isn't cheap, but it is the only thing that has given serious symptom relief. Definitely not a cure, but I feel so much better.

I am much better but not 100% yet still at 2 years 2 months.   I don't know of a group here.  There are a couple on FB that are ok. 

[Martha in GA]

9 hours ago, calbear said:

I have been getting a specialized reflexology treatment using Softwave Technology from a guy who flies into my area from ATL once a month and one of the areas they always treat is my lymphatic system which is always blocked up. It isn't cheap, but it is the only thing that has given serious symptom relief. Definitely not a cure, but I feel so much better.

I have no idea if this would be helpful, but would gentle bouncing on a rebounder maybe help keep the lymph moving?

[kbutton]

On 12/11/2022 at 11:09 AM, BeachGal said:

But if all the havoc is being done inside these minuscule clots, regular pathology tests won’t pick it up. A network of specialists is now setting out to see if specialized tests can be accessible and if the clots can be treated.

Like ultrasound, d-dimer, CT? I am really curious about this.

We have a lot of clotting risk in our family, and there are people who have had conditions (various kinds of GI perforations) that some literature suggests can be tied to microclotting (but don't have to be).