Author Topic: Covid 19 Long Haulers  (Read 9628 times)

Charles_b

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Re: Covid 19 Long Haulers
« Reply #20 on: January 31, 2022, 02:59:44 PM »
Just came across the following study on long-covid correlated changes in microbiota.  This could potentially pertain to POIS as well if it is gut related, as many have postulated.  I know John21 had success with antimicrobials and probiotics, and others have had success with diet changes.

https://gut.bmj.com/content/early/2022/01/05/gutjnl-2021-325989


Interesting part on bacteria that was low or missing from the gut of long-haulers after 6 months: “ Butyrate-producing bacteria, including Bifidobacterium pseudocatenulatum and Faecalibacterium prausnitzii showed the largest inverse correlations with PACS at 6 months.”
« Last Edit: January 31, 2022, 03:03:25 PM by Charles_b »

certainlypois2

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longcovid drug combination
« Reply #21 on: December 25, 2022, 04:40:26 AM »
A Study is showing Guanfacine and the anti-oxidant NAC helps 8 out 10 longhaulers with brain fog. This might help us.
https://www.reddit.com/r/covidlonghaulers/comments/zuo9nl/13_exciting_brain_fog_drug_pacing_tips_and_a_xmas/

Quantum

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Re: Covid 19 Long Haulers
« Reply #22 on: January 11, 2023, 09:22:47 AM »
I stumbled upon an interesting article on Long Covid, and we can see similitude with POIS.  The article mentions similarities with Lyme, chronic fatigue syndrome, etc... if the authors knew about POIS, they may have included it in their list:
"How Long COVID Defies Simple SolutionsLong COVID is a “dynamic disability” that requires health professionals to go off script when a patient’s symptoms don’t respond in a predictable way to treatment, says David Putrino, PhD, a neuroscientist, physical therapist, and director of rehabilitation innovation for the Mount Sinai Health System in New York City. “We’re not so good at dealing with somebody who, for all intents and purposes, can appear healthy and non-disabled on one day and be completely debilitated the next day,” he says.
Putrino says more than half of his clinic’s long COVID patients told his team they had at least one of these persistent problems:
  • Fatigue (82%)
  • Brain fog (67%)
  • Headache (60%)
  • Sleep problems (59%)
  • Dizziness (54%)
And 86% said exercise worsened their symptoms.
The symptoms are similar to what doctors see with illnesses such as lupus, Lyme disease, and chronic fatigue syndrome – something many experts compare long COVID to. Researchers and medical professionals still don’t know exactly how COVID-19 causes those symptoms. But there are some theories.
Potential Causes Of Long COVID Symptoms
Putrino says it is possible the virus enters a patient’s cells and hijacks the mitochondria – a part of the cell that provides energy. It can linger there for weeks or months – something known as viral persistence. “All of a sudden, the body’s getting less energy for itself, even though it’s producing the same amount, or even a little more,” he says. And there is a consequence to this extra stress on the cells. “Creating energy isn’t free. You’re producing more waste products, which puts your body in a state of oxidative stress,” Putrino says. Oxidative stress damages cells as molecules interact with oxygen in harmful ways.
“The other big mechanism is autonomic dysfunction,” Putrino says. It’s marked by breathing problems, heart palpitations, and other glitches in areas most healthy people never have to think about. About 70% of long COVID patients at Mount Sinai’s clinic have some degree of autonomic dysfunction, he says.
For a person with autonomic dysfunction, something as basic as changing posture can trigger a storm of cytokines, a chemical messenger that tells the immune system where and how to respond to challenges like an injury or infection. “Suddenly, you have this on-off switch,” Putrino says. “You go straight to ‘fight or flight,’” with a surge of adrenaline and a spiking heart rate, “then plunge back to ‘rest or digest.’ You go from fired up to so sleepy, you can’t keep your eyes open.”
A patient with viral persistence and one with autonomic dysfunction may have the same negative reaction to exercise, even though the triggers are completely different."



Source:  https://www.webmd.com/covid/news/20220803/why-exercise-doesnt-help-people-with-long-covid ( probably not accessible to the public, I need to log in to have access)
What I also found interesting is their presentation of two different causes of long covid symptoms:  problems with energy production in mitochondria, or autonomic dysfunction causing cytokines imbalance. 

Just after that, it is said that both types have the same negative effects from exercise, but with totally different triggers.  This is much in line with my hypothesis of different types of POIS leading to the same symptoms.
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Quantum

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Re: Covid 19 Long Haulers
« Reply #23 on: February 17, 2023, 07:52:13 PM »
If you have spare time, it is definitively worth reading this article about the evolution of the research on long Covid:
https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/
They discuss brain inflammation caused by cytokine release, the possibility that viral particles remain in the body and cause inflammation, POTS and other neurological problems, ME/CFS similarities with Long Covid, Long Covid as an umbrella term for different specific presentations, and so on...   As you can see, most of this could apply to POIS as well.


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Unluckiest_Lady_Alive

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Re: Covid 19 Long Haulers
« Reply #24 on: June 04, 2023, 08:55:14 PM »
Was just Googling "Long COVID symptoms" last night and a lot of them overlap with POIS (per CDC website):


General symptoms (Not a Comprehensive List):

Tiredness or fatigue that interferes with daily life
Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
Fever

Respiratory and heart symptoms:

Difficulty breathing or shortness of breath
Cough
Chest pain
Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms:

Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
Headache
Sleep problems
Dizziness when you stand up (lightheadedness)
Pins-and-needles feelings
Change in smell or taste
Depression or anxiety

Digestive symptoms:

Diarrhea
Stomach pain

Other symptoms:

Joint or muscle pain
Rash
Changes in menstrual cycles

Notice it's 'not a comprehensive list' and they go on to say that "Some people with Long COVID have symptoms that are not explained by tests or easy to manage."  Clearly everyone with Long COVID won't have ALL these symptoms and some will have symptoms not listed here. 

ACE-2 receptors are located throughout the body, not just the heart & lungs, so for doctors to dismiss anything not lung/heart related is very shortsighted.  COVID is the new Great Imitator as far as I'm concerned.  It can reactivate 8 herpesviruses that reside in our bodies (chickenpox/shingles, Epstein-Barr, CMV, etc), cause serious neurological complications including triggering Parkinson's disease* in at least 6 people & create all kinds of autoimmune havoc in survivors.  Why symptoms would worsen after masturbation/sex is beyond me (post-exertional malaise maybe?), but I've often thought that's what's going on with me. 



* CDC Long COVID page: 
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

* PubMed COVID/Parkinson's study:   
https://pubmed.ncbi.nlm.nih.gov/36807419/
« Last Edit: June 04, 2023, 08:57:36 PM by Unluckiest_Lady_Alive »
Current Meds:  Prozac, Topamax, Adderall, Omeprazole, clobenzorex, OTC sleep aids (Benadryl, Unisom, Valerian, melatonin), codeine, griseofulvin, topical antifungals (azoles, allylamines, benzylamines, others).

certainlypois2

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Re: Covid 19 Long Haulers
« Reply #25 on: July 30, 2023, 01:42:27 AM »
https://time.com/6238147/microclots-long-covid/
https://www.npr.org/2023/05/10/1175217130/long-covid-scientists-try-to-unravel-blood-clot-mystery

Micro clots could be the cause long covid, including the cognitive symptoms. Inflammation damage blood vessels which attracts plaques that cause clots. When there are clots, the mitochondria do not get the nutrients they need to function properly which leads to other cells not function at 100%

Progecitor

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Re: Covid 19 Long Haulers
« Reply #26 on: July 31, 2023, 07:34:57 AM »
https://time.com/6238147/microclots-long-covid/
https://www.npr.org/2023/05/10/1175217130/long-covid-scientists-try-to-unravel-blood-clot-mystery

Micro clots could be the cause long covid, including the cognitive symptoms. Inflammation damage blood vessels which attracts plaques that cause clots. When there are clots, the mitochondria do not get the nutrients they need to function properly which leads to other cells not function at 100%

Phosphatidylserine probably has a key role in this process. There is also a post about it, if you are interested.
https://poiscenter.com/forums/index.php?topic=4321.msg46330#msg46330
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

certainlypois2

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« Last Edit: September 07, 2023, 06:51:45 PM by certainlypois2 »


Quantum

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Re: Covid 19 Long Haulers
« Reply #29 on: January 27, 2024, 12:38:28 PM »
This approach I read about in an article on Medscape about Long-Covid reflects perfectly my view on POIS, with more than one phenotype, and the need to identify them:
"We'll gain a better understanding of each long COVID phenotypeThis past year, a wide breadth of research began showing that long COVID can be defined by a number of different disease phenotypes that present a range of symptoms.
 identified four clinical phenotypes: Chronic fatigue-like syndrome, headache, and memory loss; respiratory syndrome, which includes cough and difficulty breathing; chronic pain; and neurosensorial syndrome, which causes an altered sense of taste and smell.

Identifying specific diagnostic criteria for each phenotype would lead to better health outcomes for patients instead of treating them as if it were a "one-size-fits-all disease," said Nisha Viswanathan, MD, director of the long COVID program at UCLA Health, Los Angeles, California.
Ultimately, she hopes that this year her patients will receive treatments based on the type of long COVID they're personally experiencing, and the symptoms they have, leading to improved health outcomes and more rapid relief.
"Many new medications are focused on different pathways of long COVID, and the challenge becomes which drug is the right drug for each treatment," said Viswanathan."


Source:  https://www.medscape.com/viewarticle/five-bold-predictions-long-covid-2024-2024a10001te


Since this article is not accessible to the majority, here is the complete article, for those interested ( 4 of those 5 points could be interesting for POIS, except #3, because Paxlovid is a specific combination of antiviral aimed against SARS-COV-2. The use of metformin mentioned at #4, in particular, is interesting - it is very cheap, and despite it being a diabetes drug, it cannot induce hypoglycemia, so it is safe even for non-diabetic persons. Metformin could be tested as a "pre-pack" drug, under the supervision of a doctor, since it is a prescription-only drug ):

Five Bold Predictions for Long COVID in 2024Sara Novak
 January 25, 2024 With a number of large-scale clinical trials underway and researchers on the hunt for new therapies, long COVID scientists are hopeful that this is the year patients — and doctors who care for them — will finally see improvements in treating their symptoms.
Here are five bold predictions — all based on encouraging research — that could happen in 2024. At the very least, they are promising signs of progress against a debilitating and frustrating disease.
#1: We'll gain a better understanding of each long COVID phenotype
This past year, a wide breadth of research began showing that long COVID can be defined by a number of different disease phenotypes that present a range of symptoms.
Researchers identified four clinical phenotypes: Chronic fatigue-like syndrome, headache, and memory loss; respiratory syndrome, which includes cough and difficulty breathing; chronic pain; and neurosensorial syndrome, which causes an altered sense of taste and smell.

Identifying specific diagnostic criteria for each phenotype would lead to better health outcomes for patients instead of treating them as if it were a "one-size-fits-all disease," said Nisha Viswanathan, MD, director of the long COVID program at UCLA Health, Los Angeles, California.
Ultimately, she hopes that this year her patients will receive treatments based on the type of long COVID they're personally experiencing, and the symptoms they have, leading to improved health outcomes and more rapid relief.
"Many new medications are focused on different pathways of long COVID, and the challenge becomes which drug is the right drug for each treatment," said Viswanathan.
#2: Monoclonal antibodies may change the game
We're starting to have a better understanding that what's been called "viral persistence" as a main cause of long COVID may potentially be treated with monoclonal antibodies. These are antibodies produced by cloning unique white blood cells to target the circulating spike proteins in the blood that hang out in viral reservoirs and cause the immune system to react as if it's still fighting acute COVID-19.
Smaller-scale studies have already shown promising results. A January 2024 study published in The American Journal of Emergency Medicine followed three patients who completely recovered from long COVID after taking monoclonal antibodies. "Remission occurred despite dissimilar past histories, sex, age, and illness duration," wrote the study authors.
Larger clinical trials are underway at the University of California, San Francisco, California, to test targeted monoclonal antibodies. If the results of the larger study show that monoclonal antibodies are beneficial, then it could be a game changer for a large swath of patients around the world, said David F. Putrino, PhD, who runs the long COVID clinic at Mount Sinai Health System in New York City.
"The idea is that the downstream damage caused by viral persistence will resolve itself once you wipe out the virus," said Putrino.
#3: Paxlovid could prove effective for long COVID
The US Food and Drug Administration granted approval for Paxlovid last May for the treatment of mild to moderate COVID-19 in adults at a high risk for severe disease. The medication is made up of two drugs packaged together. The first, nirmatrelvir, works by blocking a key enzyme required for virus replication. The second, ritonavir, is an antiviral that's been used in patients with HIV and helps boost levels of antivirals in the body.
In a large-scale trial headed up by Putrino and his team, the oral antiviral is being studied for use in the post-viral stage in patients who test negative for acute COVID-19 but have persisting symptoms of long COVID.
Similar to monoclonal antibodies, the idea is to quell viral persistence. If patients have long COVID because they can't clear SAR-CoV-2 from their bodies, Paxlovid could help. But unlike monoclonal antibodies that quash the virus, Paxlovid stops the virus from replicating. It's a different mechanism with the same end goal.
It's been a controversial treatment because it's life-changing for some patients and ineffective for others. In addition, it can cause a range of side effects such as diarrhea, nausea, vomiting, and an impaired sense of taste. The goal of the trial is to see which patients with long COVID are most likely to benefit from the treatment.
#4: Anti-inflammatories like metformin could prove useful
Many of the inflammatory markers persistent in patients with long COVID were similarly present in patients with autoimmune diseases like rheumatoid arthritis, according to a July 2023 study published in JAMA.
The hope is that anti-inflammatory medications may be used to reduce inflammation causing long COVID symptoms. But drugs used to treat rheumatoid arthritis like abatacept and infliximabcan also have serious side effects, including increased risk for infection, flu-like symptoms, and burning of the skin.
"Powerful anti-inflammatories can change a number of pathways in the immune system," said Grace McComsey, MD, who leads the long COVID RECOVER study at University Hospitals Health System in Cleveland, Ohio. Anti-inflammatories hold promise but, McComsey said, "some are more toxic with many side effects, so even if they work, there's still a question about who should take them."
Still, other anti-inflammatories that could work don't have as many side effects. For example, a study published in The Lancet Infectious Diseases found that the diabetes drug metformin reduced a patient's risk for long COVID up to 40% when the drug was taken during the acute stage.
Metformin, compared to other anti-inflammatories (also known as immune modulators), is an inexpensive and widely available drug with relatively few side effects compared with other medications.
#5: Serotonin levels — and selective serotonin reuptake inhibitors (SSRIs) — may be keys to unlocking long COVID
One of the most groundbreaking studies of the year came last November. A study published in the journal Cell found lower circulating serotonin levels in patents with long COVID than in those who did not have the condition. The study also found that the SSRI fluoxetine improved cognitive function in rat models infected with the virus.
Researchers found that the reduction in serotonin levels was partially caused by the body's inability to absorb tryptophan, an amino acid that's a precursor to serotonin. Overactivated blood platelets may also have played a role.
Michael Peluso, MD, an assistant research professor of infectious medicine at the UCSF School of Medicine, San Francisco, California, hopes to take the finding a step further, investigating whether increased serotonin levels in patients with long COVID will lead to improvements in symptoms.
"What we need now is a good clinical trial to see whether altering levels of serotonin in people with long COVID will lead to symptom relief," Peluso said last month in an interview with Medscape Medical News.
If patients show an improvement in symptoms, then the next step is looking into whether SSRIs boost serotonin levels in patients and, as a result, reduce their symptoms.




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less_fogged

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Re: Covid 19 Long Haulers
« Reply #30 on: January 27, 2024, 03:55:31 PM »
Hi Quantum,

because I see you doing some reading on long Covid and CFS I thought you might also be interested in reading prof dr Frank Comhaire's research (internist and endocrinologist). Dutch speaking but articles are in english.

https://www.me-gids.net/arts/comhaire-frank/

Quantum

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Re: Covid 19 Long Haulers
« Reply #31 on: January 27, 2024, 11:31:58 PM »
Hi less-fogged,
Thanks fro the link.
I have looked a bit and saw similar ideas the the ones in the article I have cited earlier in this thread.   I will look further when I will have time to.
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Quantum

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Re: Covid 19 Long Haulers
« Reply #32 on: February 22, 2024, 10:48:38 PM »
A Swiss team have found a link between long COvid and a dysfunction of a part of the immune system called the complement system:
https://www.science.org/doi/10.1126/science.adg7942

By testing for 6500 blood proteins in about 300 patients, the Swiss researchers found that dysfunctional complement system proteins could explain fatigue and "smoldering inflammation"
Could this same marker be found in POIS ???





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demografx

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Re: Covid 19 Long Haulers
« Reply #33 on: February 23, 2024, 04:25:51 PM »
A Swiss team have found a link between long COvid and a dysfunction of a part of the immune system called the complement system:
https://www.science.org/doi/10.1126/science.adg7942

By testing for 6500 blood proteins in about 300 patients, the Swiss researchers found that dysfunctional complement system proteins could explain fatigue and "smoldering inflammation"
Could this same marker be found in POIS ???

Interesting!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Progecitor

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Re: Covid 19 Long Haulers
« Reply #34 on: April 07, 2024, 02:47:45 PM »
One of the local labs offers a Long-COVID test. This is a standardized test developed by an international medical collaboration.
https://www.covidlonghaulers.com/uk/home
https://www.covidlonghaulers.com/north-america/home
The 14 Cytokine panel measures the following: IL-2, IL-4, IL-13, CCL3, IL-6, IL-10, INF-gamma, VEGF, GM-CSF, CCL4, TNF-alfa, sCD40L, CCL5 (Rantes), CXCL8 (IL-8).
Clearly some of these cytokines like IL-8, IL-10, GM-CSF etc. are probably altered in POIS as well, thus it could be useful to measure them even if POIS was not developed due to long-COVID. The local lab offers the test around 630 euros. At the moment this is too expensive for me, but there might be people who would be interested. Of course you will need the help of a doctor or lab for this.
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

berlin1984

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Re: Covid 19 Long Haulers
« Reply #35 on: April 08, 2024, 10:41:42 AM »
The Nicotine Test: Using nicotine patches (not smoking/vaping/longzes...) against Long Covid (and maybe for some people against ME/CFS... or POIS, who knows  :D ) )

https://linktr.ee/thenicotinetest
https://www.google.com/search?q=thenicotinetest