POISCENTER
General Category => General POIS Discussions => Topic started by: MrMoonJr on July 16, 2020, 01:41:31 PM
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Hi,
I fear I maybe a covid 19 Long Hauler.
March 21 I had suffered from what a cardiologist described as a heart infection. I was admitted to the hospital because of extreme shallow breath and chest pains.
After the diagnosis I suffered from extreme Fatigue, mental confusion, and waves of shallow breath. Fast forward to 3 weeks ago. I develop acid reflux at the age of 28 and have never had problems with diet and am only 125 lbs. Heart burn was excruciating. Went to the hospital because of the pain and they told me it was a viral infection ( which is funny because the symptoms of my heart infection had not gone away)
This whole time I had not been tested for covid because my doctors did not see a fever or see a problem with my lungs.
I'm posting my story here because I have suspected that I may have what some call long haul covid 19. I have watched many videos on the news ( including one last night on CNN) of people with similar stories.
BUT here is where it gets interesting.. minus the degree of shortness of breath and heart burn.. the symptoms just feel like a really bad POIS episode. The cognitive effects people report such as brain fog and ability to find words in speech seem particularly similar!
I am just wondering.. if the immunological response that these people face correlates to POIS. I have heard many doctors mention T cell in their research...
Just a post by someone whose suffered from POIS for 12 years
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There seems to be some similarities between Covid Long Haulers and POIS. Here's a good article about treating Long Covid with Niacin.
https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d (https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d)
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There seems to be some similarities between Covid Long Haulers and POIS. Here's a good article about treating Long Covid with Niacin.
https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d (https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d)
Thanks, I have copied your article to the POIS thread on the phoenix rising forum as well:
https://forums.phoenixrising.me/threads/postorgasmic-illness-syndrome-pois.81982/page-2#post-2316968
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SARS-CoV-2 and the reproductive system: known and the unknown..!! (https://link.springer.com/article/10.1186/s43043-020-00046-z)
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A diagnosis changed my life. Now COVID is shining a light on my little-known illness. (https://www.charlotteobserver.com/news/coronavirus/article248174095.html)
Post-COVID POTS (https://scholar.google.com/scholar?hl=nl&as_sdt=0%2C5&q=covid+pots&btnG=)
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Thanks MrMoonJr.
Yes, the symptoms describe for the Long COVID syndrome looks a lot like POIS symptoms:
https://en.wikipedia.org/wiki/Long_COVID (https://en.wikipedia.org/wiki/Long_COVID) , in particular see https://en.wikipedia.org/wiki/Long_COVID#List_of_symptoms
Here is another source of data on this topic:
"A follow-up study of COVID-19 consequences in 1,733 patients discharged from the hospital in Wuhan, China after 6 months reported fatigue or muscle weakness (63%), sleep difficulties (26%), and anxiety or depression (23%) were the most common symptoms. Lung function, as measured by CT showing interstitial change and 6-minute walking distance, was less than the lower limit of normal for 22-56% across different severity scales. [168]"( from a site I have access thourgh my profession, so cannot link to the article. The ref 168 is https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32656-8/fulltext (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32656-8/fulltext). OF note is that they cite the psychological problems, not cited much in the wikipedia article. )
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I think a virus could have reprogrammed mast cells as in changed their phenotype. The long haulers are now stuck with abnormal responding mast cells.
I had a flu back in januari 2020 (could have been COVID i don't know). The strange thing was that, there was emphasis on my lungs. Plus random volumetric distributions of tissue throughout the body were being excited in a domino-like (chaining) fashion, it starts at one spot and then it spreads out like a wave in one direction. These things happen less frequently usually by various triggers but whatever virus it was it just sped up the frequency and was going wild. You could call them flares as well.
My two cents is that reactive mast cells responded to the virus and chained neighbouring cells.
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I think a virus could have reprogrammed mast cells as in changed their phenotype. The long haulers are now stuck with abnormal responding mast cells.
I had a flu back in januari 2020 (could have been COVID i don't know). The strange thing was that, there was emphasis on my lungs. Plus random volumetric distributions of tissue throughout the body were being excited in a domino-like (chaining) fashion, it starts at one spot and then it spreads out like a wave. These things happen less frequently usually by various triggers but whatever virus it was it just sped up the frequency and was going wild. You could call them flares as well.
My two cents is that reactive mast cells responded to the virus and chained neighbouring cells.
Maybe POIS is this sort of domino activation effect too once initially induced by some infections in the past?
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Maybe POIS is this sort of domino activation effect too once initially induced by some infections in the past?
That's a possibility.
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Journey found this:
https://www.reddit.com/r/covidlonghaulers/comments/k9exxt/sex_ejaculation_induced_relapse/
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Cross-linking:
Gut microbiota composition reflects disease severity and dysfunctional immune responses in patients with COVID-19 (https://poiscenter.com/forums/index.php?topic=3688.0)
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Cross-linking:
Gut microbiota composition reflects disease severity and dysfunctional immune responses in patients with COVID-19 (https://poiscenter.com/forums/index.php?topic=3688.0)
Maybe POIS is some sort of state of some similar type of long term changes after getting some virus or bacteria or other circumstances so basically whatever initial thing there was in the organism is treated by the body immunity system but due to some other imbalance it could not maybe fully clear out everything or fully return back to the state before so during orgasming and ejaculating some of the remaining imbalance gets triggered or the lack of full return to the state before had imbalanced something which made the body react in an unusual way to orgasming/ejaculating/sexual activities in the general and giving the Post Orgasmic Illness Syndrome so those POISers who treated it with antibiotics and probiotics promoted a better microbial environment which then let for the full balancing to occur and whatever imbalance that was there for years after some infection and such that imbalance finally could be fixed and the body could return to the homeostatis it was before POIS and everything else started happening.
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Neuroinflammation in Long Covid? (https://forums.phoenixrising.me/threads/neuroinflammation-in-long-covid.81396/)
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A Role for Nox Inhibition in Coronavirus Infection (https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3773896)
"An intriguing potential implication is for Chronic Fatigue Syndrome, Mast Cell Activation Syndrome, and dysautonomia, all resembling symptoms of the COVID-19 long-hauler syndrome."
And POIS...
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There seems to be some similarities between Covid Long Haulers and POIS. Here's a good article about treating Long Covid with Niacin.
The Team of Doctors and Biohackers Who Seem to Be Successfully Treating “Long Covid” (https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d)
Pictures, click to enlarge:
(https://miro.medium.com/max/700/1*B6DaFMsRI06Xo6A6cU6Kfw.png)
(https://miro.medium.com/max/700/1*BKOxIIbDM0fkHMzUkYv5tw.png)
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NAD+ Long Covid Theory
Thread about NADH (/ NAD+ / NAD): https://poiscenter.com/forums/index.php?topic=2496
https://en.wikipedia.org/wiki/Nicotinamide_adenine_dinucleotide
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https://www.theguardian.com/world/2021/jan/25/covid-linked-to-risk-of-mental-illness-and-brain-disorder-study-suggests
"I think particularly this raises a few disorders up the list of interests, particularly dementia and psychosis … and pushes a few a bit further down the list of potential importance, including Guillain-Barré syndrome."
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I got through COVID-19 recently. Even though a connection to POIS is likely, still I couldn't judge whether there is one. I don't even know if POIS actually helped or if it was the medication I use for it. I lean to opt for the latter as at least they made me feel better POIS-wise and my symptoms were rather mild contrary to my expectations. I thought it could be interesting so I documented it. Well it didn't turn out to be so fortunately, but some bits might have relevance.
COVID-19 progression from symptom onset:
- day 1-3: Coincidentally I had an O on day 1, so at first I thought only POIS was acting up. I had a mild-weak tonsillitis from day 1 to 3. The pain was way weaker than the recurring tonsillitis I usually have. On the evening of day 3 I began to develop a headache reminiscent of a flu onset. I was dizzy and I might had a mild fever, but I didn't measure it as it wasn't anything serious. I began to suspect coronavirus infection as my mother also had flu-like symptoms at the time. This was the time I began my haphazard counterattack. I took a lot of things and I think they helped. I had a moderate pain in one hand and I took aspirin for it which really helped. My brother also had covid a few months earlier and aspirin helped with his leg pain. I also stopped taking MACA as I suspected a risk for thrombosis.
The medication I used henceforth: daily two cups of saffron tea (10-20 pieces each), daily one or two Aspirin [100 mg] (fortunately I didn't develop a heartache this time around), daily one pill of vitamin D (4000 IU), some vitamin C, daily one zinc and selenium pill, a mixed herbal tea made of chamomile, lemon balm, lime and dandelion root of which I drank a lot. I also made a strong Cistus incantus tea that I took a sip of from time to time, but I didn't drink more than one cup a day, because of my previous negative experiences. I also dripped some of it into my nose from time to time and it helped to reduce the dryness and burning pain so it probably inhibited the proliferation of the virus. It may be possible that this was the most effective treatment, but I can't be completely sure and maybe risky to try for others so be careful. I also took some MACA and L-Tryptophan occasionally, but mainly from the last days of the infection.
- day 4: No symptoms at all. Maybe only the dry nose.
- day 5: I developed a moderate tonsillitis again, but nothing else. On this day I had another O as I am really-really stupid.
- day 6: The tonsillitis got weaker, but I was not feeling well generally even though I used the usual medications. I don't know if it was only POIS or the additive effect of the two diseases.
- day 7: In the morning when I was half-asleep I felt some intermittent pain in the testicles, which is not a usual symptom of my POIS. The tonsillitis almost disappeared and I was feeling moderately well. Pus began to be produced, but only small amounts.
- day 8: I didn't sleep much this night. When getting up I had a moderate headache and pus production was also moderate. I had to go somewhere and I rode the bike for twenty minutes. When I stopped a severe nausea overcome me and I almost vomited, but it passed shortly. I sneezed quite often this day. I slept some in the afternoon and the headache went down afterwards. Surprisingly this was the moment my sense of taste and smell completely disappeared. Before sleeping I ate something and had no problems. I hardly had any symptoms besides this. Maybe the occasional little pain in the chest, but I have this all the time due to my chronic POIS anyway. Actually my usual acute chest pain is so much stronger that this can't even compare. I also didn't have breathlessness although I was sitting most of the days, which might have made it harder to notice without exertion.
- day 9: An occasional sneeze or cough still appeared. Also no taste or smell henceforth. I couldn't sense nor coffee, sour herbal teas or even toothpaste, which was a really horrible experience. In the afternoon I began to have a strong muscle ache (mainly the upper arms and upper legs) were involved. This was stronger than the usual fatigue-like weak to moderate pain I experience with POIS. On day 8 and 9 I ate some cookies with apricot jam and I don't think it was a good idea as it is one of the top food that enhance my POIS and it caused a burning stool that I could suppress in the preceding days with the increased amounts of POIS medication I took. However it is not clear if the increased coronavirus symptoms were due to the natural course of the infection or if POIS was really involved somehow.
- day 10: I had a moderate muscle ache during the day. I think this was the last day I had testicular pain which occurred occasionally and randomly. I can't define it better as it was always a short burst of pain and by the time I took notice it was gone.
- day 11: Only weak muscle ache.
- day 12: Muscle ache disappeared.
- day 13: I had a serious red eye in the morning, but it got better after taking my medication. In the afternoon I began to regain my sense of taste.
From this day forward I didn't document things, but everything got better day by day even though I also began to work again (only part time). In the following days I somewhat regained the sense of smell too, but even after more than one week the sense of taste and smell is much worse than before, but at least there is a little. I also had an O after one week, but it doesn't look like anything changed as I still have the usual POIS symptoms that are neither weaker nor stronger or at least it is hard to notice with treatment.
Pus production was also much lesser than with the usual tonsillitis I have, although so far I only lost my sense of smell with that, but never my sense of taste. As I have began to take effective POIS medication recently it is possible that they could ameliorate other infections as well.
I have a blood type of 0 Rh- which might have helped somewhat.
Also as I lost my senses in a later stage of the infection it could mean that I had the British variant, which is quite prevalent in my country, but I can't be sure of course.
Not in relation to covid, but somewhere I mentioned that I have this strange symptom I call ass muscle inflammation that I am not even sure if is in connection to POIS. I haven't had this for months now, but what I noticed is that it tended to appear again after taking zinc pills. The next day a mild pain appeared, but it usually disappeared in a few hours. When I only took selenium pills it didn't occur at all. I am still not completely sure if zinc really induces this symptom, but it seems more and more likely. Otherwise I don't think zinc has any impact on my POIS, but it might have helped in ameliorating the infection so it was worth the risk.
I also didn't dare to try NAC for which I am a bit sorry after writing so much about it.
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https://www.reddit.com/r/POIS/comments/nlcek2/doctors_help/gzi65be?utm_source=share&utm_medium=web2x&context=3
"Thank you for these resources.. these will be good to forward onto my doctor!!
I basically think I contracted covid in March but wasn’t confirmed as didn’t test then had covid officially in November again.. since March last year pois symptoms have been present but before COVID I only used to come down with the symptoms if I came into contact with my own semen I remember... after getting the second covid I’ve now have food intolerances, problems post exercise etc all of which I didn’t have pre covid, also now I only need to get aroused to get pois symptoms."
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I thought I would report that I have just gotten through my second covid-19 infection, which was most probably the omicron variant. I wasn’t really worried this time, however there were a few days when it felt worse than the first infection. This time it lasted shorter, but I had a quite strong tonsillitis for several days, which was more reminiscent to the strong and recurrent infections I got in the last ten years when I have not been treating my POIS at all. I was more careful and avoided any sexual practice, although I had an O the day before the first symptoms appeared, so I was technically in acute POIS most of the time. Besides tonsillitis I had a weak pneumonia in the first few days and had a little shortness of breath under physical exertion. There was a day when it felt like I would develop a fever as the feeling of heat was appearing and disappearing in waves, but I did not even measure the temperature as it seemed pointless. On the third day I was battling with bloodshot eyes, but saffron and triphala helped a lot. Besides these I used some of the better POIS supplements like alfalfa, maca, astaxanthin, resveratrol, vitamin C+D and some mixed teas (mostly chamomile, lemongrass, linden, lavender, rosemary). I also took some aspririn and algopyrin. Around the seventh day the tonsillitis disappeared, however the throat became hypersensitive and I began to cough a lot. More accurately I hardly ever coughed during the day, but whenever I went to bed I started to cough inexorably almost right away, which made sleeping really difficult in the last few days even though all other symptoms practically disappeared or became indistinguishable from common POIS symptoms. Now it is the tenth day since it began, but the throat is only slowly getting better.
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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.”
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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/
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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 (https://www.mountsinai.org/care/rehab-medicine/services/post-acute-covid19-program) told his team they had at least one of these persistent problems (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8667685/):- 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 (https://www.webmd.com/lupus/ss/slideshow-lupus-overview), Lyme disease, and chronic fatigue syndrome (https://www.webmd.com/chronic-fatigue-syndrome/what-is-chronic-fatigue-syndrome) – something many experts (https://www.jospt.org/doi/10.2519/jospt.2021.0106) 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 (https://www.webmd.com/heart-disease/guide/what-causes-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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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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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/
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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%
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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
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https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691274/
Using guanfancine and nac
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https://www.reddit.com/r/covidlonghaulers/comments/uuysk2/masturbation_triggered_my_long_covid/
https://www.reddit.com/r/covidlonghaulers/comments/wamnmu/orgasms_completely_destroy_me_now_they_easily/
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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 (https://emedicine.medscape.com/article/1048596-overview), 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 (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00284-5/fulltext) identified four clinical phenotypes: Chronic fatigue-like syndrome, headache (https://emedicine.medscape.com/article/1048596-overview), 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 (https://www.sciencedirect.com/science/article/pii/S073567572300534X) 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 (https://classic.clinicaltrials.gov/ct2/show/NCT05877508). 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 (https://www.yalemedicine.org/news/13-things-to-know-paxlovid-covid-19) 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 (https://emedicine.medscape.com/article/246031-overview) 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 (https://reference.medscape.com/drug/ademetionine-adenosylmethionine-same-344548) 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 (https://emedicine.medscape.com/article/928598-overview), 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 (https://emedicine.medscape.com/article/331715-overview), according to a July 2023 study published in JAMA (https://jamanetwork.com/journals/jama/fullarticle/2807333?guestAccessKey=b2d402d1-9027-49c8-9410-0cd186909528&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=071023).
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 (https://reference.medscape.com/drug/orencia-orenica-clickject-abatacept-343194) 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 (http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext) found that the diabetes drug metformin (https://reference.medscape.com/drug/glucophage-metformin-342717) 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 (https://www.cell.com/cell/fulltext/S0092-8674(23)01034-6?_returnURL=https://linkinghub.elsevier.com/retrieve/pii/S0092867423010346?showall=true) 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 (https://reference.medscape.com/drug/prozac-fluoxetine-342955) 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 (https://reference.medscape.com/drug/platelets-999506) 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 (https://www.medscape.com/viewarticle/998111).
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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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/
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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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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 (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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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 (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!
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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.
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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
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Earlier this year (February) I had a covid infection once again. It wasn’t anything bad, as it felt like a regular illness. I had a sore throat for about a week, but it wasn’t strong. Around the third week I had the usual covid eye, which means that one of the eyes was very bloodshot for almost a week and it was not resolving even when taking supplements that usually help at least a little and temporarily. Around this time I also lost the sense of smell as I breathed into a coffee bag and couldn’t feel anything at all, which is also indicative of covid.
Around two months ago (October) I caught covid once again. This time the sore throat was even less of a problem, however my voice was very thin for about a week. Some of my relatives and acquaintances also had very thin voices for days. The enlarged lymph nodes on my neck got even bigger in the beginning. The infection lasted for almost a month and my colleagues also complained about their condition to be not resolving. They also complained about joint pain and at least one colleague about the loss of smell. Around the third week I got the covid eye again. The left eye was really bloodshot even though the right eye was fairly alright. Depression also felt worse in conjunction. Even though I had been taking a lot of supplements that were usually useful for bloodshot eyes, only a marginal improvement was seen. Once again this lasted for almost a week, when the usual supplements became noticeably more effective and the recovery was rather rapid afterwards.
While I catch the covid infection rather frequently, I could not note any permanent deterioration at least apart from the first infection.
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A recent medical article proposes a classification of Long Covid in 5 subtypes, with symptoms characterization for each. The goal is th help doctors find the right treatment for each case they have to treat.
I hope something similar will be done, in the future, for POIS.
Here is the reference: https://jamanetwork.com/journals/jama/fullarticle/2828329?guestAccessKey=77bdd800-1217-41f0-bada-33a43d62bde1 (https://jamanetwork.com/journals/jama/fullarticle/2828329?guestAccessKey=77bdd800-1217-41f0-bada-33a43d62bde1)
The article is not that easy to read, so here is a clearer text presenting the results of the study. I copy and paste it here( this text is from https://www.medscape.com/viewarticle/new-five-type-index-provides-doctors-guide-long-covid-2025a10004gd (https://www.medscape.com/viewarticle/new-five-type-index-provides-doctors-guide-long-covid-2025a10004gd) ) :
"New Five-Type Index Provides Doctors Guide for Long COVID
David Brzostowicki February 20, 2025
A new analysis of long COVID patients has identified five distinct subtypes that researchers say will help doctors diagnose the condition.
The new five-type index (https://jamanetwork.com/journals/jama/fullarticle/2828329?guestAccessKey=77bdd800-1217-41f0-bada-33a43d62bde1&utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=121824), developed by federal researchers with the National Institutes of Health’s RECOVER COVID Initiative, identified the most common symptoms in 14,000 people with long COVID, with data from an additional 4000 people added to the updated 2024 index.
By using the index, physicians and researchers can better understand the condition, which is difficult to treat and diagnose because no standard definitions or therapies have been developed. Doctors can use the index to offer more targeted care and help patients manage their symptoms more effectively.
The index may also help researchers find more treatments for long COVID. Because long COVID can affect so many different parts of the body, it will take time to fully understand how to treat it, but studies like this are making progress in the right direction, experts said.
This new index uses an updated point system, where points are allotted to each symptom in a list of the 44 most reported symptoms in people with likely long COVID based on how often they occur. Among people in the study with prior COVID infection, 2213 (18%) met the threshold for long COVID.
The 44 most common symptoms were then distributed among five subtypes, with each representing a difference in impact on quality of life and overall health. The most common symptoms were fatigue (85.8%), postexertional malaise (87.4%), and postexertional soreness (75.0%) — where persistent fatigue and discomfort occur after physical or mental exertion — dizziness (65.8%), brain fog (63.8%), gastrointestinal symptoms (59.3%), and palpitations (58%).
For those with prior COVID infection, symptoms were more prevalent in all cases.
Subtype 1
Those grouped into subtype 1 did not report a high incidence of impact on quality of life, physical health, or daily function. Only 21% of people in subtype 1 reported a “poor or fair quality of life.”
A change in smell or taste — usually a symptom that’s bothersome but doesn’t seriously impact overall health — was most present in subtype 1, with 100% of people in subtype 1 reporting it.
The only other symptoms in over 50% of people with subtype 1— which were 490 of the 2213 with prior COVID infection — were fatigue (66%), postexertional malaise (53%), and postexertional soreness (55%).
Though these two symptoms can certainly impact quality of life, they became much more prevalent in other subtypes
.Subtype 2
The prevalence of possibly debilitating symptoms like postexertional malaise (94%), fatigue (81%), and chronic cough (100%) rose dramatically in people grouped into subtype 2.
Plus, 25% of people in subtype 2 reported a “poor or fair quality of life. Postexertional malaise, I think, is probably one of the most debilitating of the symptoms. When somebody comes in and tells me that they’re tired and I think they might have long COVID, the first thing I try to do is see if it is postexertional malaise vs just postinfectious fatigue,” said Lisa Sanders, MD, medical director of Yale’s Long Covid Multidisciplinary Care Center (https://yaledailynews.com/blog/2023/11/08/a-different-spirit-of-research-yale-clinic-seeks-to-unravel-the-mystery-of-long-covid/) in New Haven, Connecticut.
Postinfectious fatigue usually resolves much more quickly than postexertional malaise. The latter accounts for several symptoms as also associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a chronic illness that causes severe fatigue and makes it difficult for sufferers to perform routine, daily activities.
“Postexertional malaise is an additive symptom of ME/CFS, and that can take a long time to resolve,” Sanders added.
The similarity between these two symptoms highlights the importance that physicians must place in scrutinizing symptoms to a high degree when they suspect a patient of having long COVID, experts said. By doing so, clinicians can unveil the mask of overlapping symptoms between long COVID symptoms and symptoms of other illnesses.
Subtype 3
About 37% of people grouped in subtype 3 reported a poor or fair quality of life, a significant rise from subtypes 1 and 2.
Fatigue symptoms were reported by 92%, whereas 82% reported postexertional soreness, and 70% reported dizziness. Additionally, 100% of people in subtype 3 reported brain fog as a symptom.
Sanders said these symptoms are also common in people with postural orthostatic tachycardia syndrome. This condition results from a reduced volume of blood returning to the heart after standing up, which leads to an abnormally fast heart rate. Palpitations and fainting can then occur.
Brain fog can be especially debilitating (https://www.yalemedicine.org/news/how-to-manage-long-covid-brain-fog) in people who are used to multitasking. With brain fog, people accustomed to easily alternating between tasks or doing multiple tasks at once can only do one thing at a time. This can cause stress and an overload of thoughts, even precipitating a change in careers if severe enough.
Though brain fog tends to resolve within 6-9 months after infection, it can last up to 18 months or more. Experts say doctors should always be on the lookout if a patient complains they have trouble concentrating or multitasking in the months after a COVID infection. A neurological exam and cognitive testing can identify abnormalities in brain function.
Subtype 4
About 40% of people in the study grouped into subtype 4 reported a poor or fair quality of life, a modest increase from those with subtype 3. About 65% reported symptoms of brain fog and 92% reported palpitations.
Dizziness was also prevalent at 71%, whereas 60% reported gastrointestinal issues, and 36% said they experienced fever, sweats, and chills.
Nearly 700 of the 2213 people fell into this subtype group, by far the highest number.
Subtype 5
A whopping 66% of people in subtype 5 reported a poor to fair quality of life. These people usually reported multisystem symptoms.
In terms of prevalence rises across the spectrum of 44 common long COVID symptoms, 99% reported shortness of breath; 98%, postexertional soreness; 94%, dizziness; 92%, postexertional malaise; 80%, GI problems; 78%, weakness; and 69%, chest pain.
A higher proportion of Hispanic and multiracial participants were classified as having subtype 5. Also, according to the study, “higher proportions of unvaccinated participants and those with SARS-CoV-2 infection before circulation of the Omicron variant were in subtype 5.”
This suggests the severity of the Delta variant of COVID-19 be linked to some of the worst long COVID symptoms, but further study would have to be done to conclusively determine may be just a correlation.
When Do Symptoms Resolve?
According to Sanders, around 17 million Americans are thought to have long COVID. Although 90%-100% of people typically recover within 3 years, that still leaves possibly around 5% of those who don’t recover.
“What people usually say is, ‘I got COVID, and I never quite recovered,” Sanders said.
“Five percent of 17 million turns out to be a lot. It’s a lot of suffering,” she added. “I would say that the most common symptoms are fatigue, brain fog, anosmia or dysgeusia, and sleep disorders,” as evidenced by the high percentage of people in certain subtypes of the study reporting a poor quality of life."
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…I hope…similar[sub-types] will be done, in the future, for POIS…
I hope so, too!
Thanks, passing-along your post>2025 POIS/Science Gp
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…I hope…similar[sub-types] will be done, in the future, for POIS…
I hope so, too!
Thanks, passing-along your post>2025 POIS/Science Gp
Quantum, many thanks for “discovering” sub/types for all of us. I used to think there was only “one POIS”!