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Home » Long COVID

Long COVID

Long COVID: Exaggerated or Understated

  • December 22, 2022July 31, 2023
  • by Devin Russell

Long COVID: Exaggerated or Understated


This editorial is in response to “The Exaggeration of Long Covid” – by Marty Makary, MD, MPH which was in the Wall Street Journal recently. I’ve broken down his article because it’s an interesting opinion piece where people will go, yes I agree with that, and then one second later think, this guy is the Michael Jordan of medical gaslighting.

“Lingering symptoms after a respiratory infection are common. Most cases are too mild to worry about.”

And we’re off! I’ve had several respiratory infections in my life prior to COVID, which is by the way really a vascular disease Dr. Marty. Just FYI! You should know this after 3 years as a doctor who has Long COVID patients. I’ve never had any significant or long standing lingering symptoms the way I have with COVID after a respiratory infection. Even in the more mild cases of Long Haul COVID, which mine is not, there can be a lingering for months and months of one or several symptoms that lowers quality of life, at least for that time period (and maybe causes damage that will be a problem in the future). The bigger point being, something is wrong. We shouldn’t just say, “oh well it happens so let’s pretend there isn’t something wrong to fix.” It’s not good that it’s happening (for that long). Nobody wants to be half speed or worse for weeks, months, or years. He says lingering symptoms after a respiratory infection are common, any source for that? Does anyone who has had both really buying what he is trying to sell?

“Long Covid is real. I have reliable patients who describe lingering symptoms after Covid infection. But public-health officials have massively exaggerated long Covid to scare low-risk Americans as our government gives more than $1 billion to a long Covid medical-industrial complex.”

At least he admits it’s a real condition, for the sake of his patient. Saying, “after COVID infection” indicates he’s not considering the possibility it’s COVID persistence. When I saw this article originally I thought, I bet he doesn’t believe in Chronic Lyme, so maybe he’s one of those types, but I digress. There certainly is a medical industrial complex. The government is intimately tied in with large private medical organizations. Public health organizations will do whatever they can to get more funding. Perhaps they did exaggerate. What can we put past these people at this point? But sometimes even when you think you’re exaggerating something, you’re not actually doing it. What a paradox! That’s always a possibility because the COVID data is not perfect, to put it mildly. We will go into some more data later to see how much we want to be concerned with Long Haul COVID.

What’s a low risk American exactly? I get there are people at lower risk, but to pretend there isn’t a reasonable risk for anyone is naive. Plus, we have minimal concept of the long term damage COVID or Long COVID may cause. Not all is known yet, that’s for sure, so “experts” need to stop pretending it is in order to make some point they want to make.

“The Centers for Disease Control and Prevention claims that 20% of Covid infections can result in long Covid. But a U.K. study found that only 3% of Covid patients had residual symptoms lasting 12 weeks. What explains the disparity? It’s often normal to experience mild fatigue or weakness for weeks after being sick and inactive and not eating well. Calling these cases long Covid is the medicalization of ordinary life.”

He wants to trust a government statistical agency to prove a government health agency wrong? Here’s the thing though. While a government might want to inflate Long COVID numbers, they also might want to minimize the number of COVID Long Haulers to save in the wallets. Let’s go through the studies he’s talking about because some corrections need to be made.

The UK study he is talking about can be found here.₁ Problem 1 in the first line! “Experimental estimates of the prevalence of symptoms that remain 12-weeks after coronavirus (COVID-19) infection (commonly referred to as “long COVID”) range from 3.0% based on tracking specific symptoms, to 11.7% based on self-classification of long COVID, using data to 1 August 2021.” He didn’t mention that the prevalence could be as high as 11.7% in this study. Tsk tsk.

Problem #2! Here are the results of the study “among study participants with COVID-19, 9.4% reported any of 12 symptoms four to eight weeks after infection (based on responses from 15,061 participants), while 5.0% reported symptoms at 12 to 16 weeks (out of 12,611 participants) (Figure 1). These percentages were statistically significantly higher than in the control group, suggesting that the prevalence of symptoms following COVID-19 infection is greater than the background prevalence of these symptoms in the population at any given time. The difference in prevalence remained statistically significant at 20 to 24 weeks.” Ut oh spaghettio!

Here it says the study is saying among those with COVID, 9.4% had 1 of 12 symptoms, even though there are 200+ Long COVID symptoms, 4 to 8 weeks after infection making at least 9.4% of COVID participants COVID Long Haulers. This is statistically significantly higher than the control group, which may be filled with, or at least have a spattering of, people who had COVID and don’t know it. 71% of those said their symptoms had a negative impact on their day-to-day activities. 20% saying their ability to undertake such activities had been “limited a lot.” Let’s say one agrees with this 3% figure. That’s still millions in the United States that have had or have Long COVID (even based on reported COVID cases, there are much more in reality than the reported cases), Not exactly a tiny number. At 9.4% we are going over 10 million and these are low estimates. When millions are affected the people in their lives are also affected compounding things, the economy is affected, their place of work is affected, their kids are affected, and the healthcare system is overburdened. It’s not just a problem for the individual with Long Haul COVID. It’s a problem on a much larger scale.

Is it often normal to experience residual symptoms for weeks after being sick and less active though? You don’t atrophy that much in a few weeks. There’s a big difference between atrophy and what Long Haul COVID does to you. I would know I had Chronic Lyme for years with limited activity because I had severe PEM due to Bartonella (a Lyme Coinfection). Even after all those years of limited activity I didn’t have even close to the muscle weakness, etc. that I did in just a few weeks into Long Haul COVID (after recovering from Lyme & Coinfections I was able to go right back to playing basketball, golf, and working out without noticing much atrophy even after 10 years). It’s not the same. It’s often used as a gaslighting excuse quite frankly. Just like, “oh you’re getting old” is used way too often instead of taking a problem seriously, finding the root, and solving the problem, but that would be hard work. It would also open one up to possible scrutiny so why not take the easy way out. Treat symptoms and say it’s normal. Nothing is ordinary about Long Haul COVID. Ignoring these cases to pretend it’s ho hum typical, is medical gaslighting. If you don’t have it, you probably don’t get it. And by the way, as COVID Long Haulers we will get sick if we eat poorly, so we don’t. What a strange thing to throw in there as an excuse for why we feel poorly.

“Two studies published this month put long Covid in perspective. The first, in the Journal of the American Medical Association, looked at a spectrum of wellness indicators in 1,000 people who recovered from symptomatic Covid or another respiratory infection. It found that 40% of patients who had tested positive for Covid “reported persistently poor physical, mental, or social well-being at 3-month follow-up.” For Covid-negative patients who had other upper-respiratory infections, the figure was 54%. Covid patients did better than non-Covid patients. While there are certainly unique hallmark conditions of Covid, such as loss of smell, any respiratory infection—flu, RSV, other cold viruses—can knock you down for a while.”

Let’s not pretend Long COVID is easy to put in to perspective, as most chronic illnesses are hard to put into perspective. Even ones that have already been around for decades. AGAIN, COVID is a vascular disease more than anything. It’s concerning when I have to correct a doctor on this, but he’s clearly trying very hard to minimize Long COVID. Respiratory disease sounds less concerning than vascular disease.

Where to even start with this first paper?₂ I feel like I could just post the entire thing in quotation marks as a referendum for the doc saying “The first, in the Journal of the American Medical Association, looked at a spectrum of wellness indicators in 1,000 people who recovered from symptomatic Covid or another respiratory infection. It found that 40% of patients who had tested positive for Covid “reported persistently poor physical, mental, or social well-being at 3-month follow-up.” For Covid-negative patients who had other upper-respiratory infections, the figure was 54%. Covid patients did better than non-Covid patients.” This is not what it says! Dr. Malarky is off misstating things again. You’re an MD and MPH, you shouldn’t be reading studies this wrong. What the hell?!

The study is not comparing COVID vs “other respiratory” infections specifically. It’s comparing symptomatic subjects with similar symptoms suggestive of COVID-19 who have positive COVID tests vs. those that had negative COVID tests. This is from the Design, Setting, and Participants: “Participants were enrolled from December 11, 2020 to September 10, 2021, and comprised adults with acute symptoms suggestive of SARS-CoV-2 infection at the time of receipt of a SARS-CoV-2 test approved by the US Food and Drug Administration.” Problems I can see right off the bat are issues with the timing of the test, if it’s administered properly, the location of the virus in the person, viral load, accuracy of test to begin with, possibly mutated variants, etc..

Also, in the study they say, “those with the most severe disease may have been unable or unwilling to participate; it is possible that those too ill to participate were at higher risk of experiencing long-term symptoms after COVID-19. It is also possible that those with cognitive impairment may have been less likely to enroll. Second, it is unclear what heterogeneous acute condition (eg, bacterial pneumonia, respiratory syncytial virus, or streptococcal pharyngitis) participants with symptomatic illness who tested negative may have been experiencing at the time of enrollment, making it difficult to hypothesize whether COVID-19-negative participants would be expected to have more or less severe patient-reported outcomes across time. … Fourth, COVID-19 tests may yield false-negative or false-positive results.”

So here’s what the study really says, of those with symptomatic COVID who had positive tests 40% had symptoms still at 3 months after initially falling ill and so did 54% of what seemed like symptomatic COVID patients with negative tests as well. Pretty easily explained by many things including (some already have been listed): those that actually tested positive for COVID would be more likely to receive or seek treatment than those that did not thus bringing down the percentage.

Another head scratcher, is the doc saying those “non-COVID” patients did worse than the COVID patients. Here’s another inconvenient portion of the study the doctor chose to ignore or didn’t read at all, “a higher proportion of participants in the COVID-19 positive group continued to report moderate to severe impairments in well-being at follow-up (at 3 months).” The 40% had a higher amount of severe impairments. Maybe they had higher viral load that the tests more easily picked up. Higher viral load worse disease? You can see all the variables and issues that arise when you really analyze a study and think things out.

I’m sitting here are my computer just dumbfounded at people that should know better. Can’t trust anything right now it seems. It’s embarrassing how this doctor is trying to distort things to fit his narrative. Something that is happening everywhere you look this day in age. Tribalism over reality at it’s finest. I hate it! It’s a poison! Always read the studies yourself because they’re easily distorted. Verify, verify, verify, as best you can anyways.

“The Brookings report determined that 2 million to 4 million people in the U.S. are working less or not at all because of their illness. … In lost wages, that could add up to at least $170 billion per year, the report suggests.”₃ This piece came out in August of 2022. The estimates seem on the lower end based on other estimates I have seen. On top of this estimate, there are probably millions more that a trying to tough it out just because their circumstances indicate they have to or they can’t feed their kids, don’t have money for treatment, or can’t keep their homes. Inflation is not exactly helping them to take the time off they might need. Saying the Flu, RSV, and other viruses can knock you down for a while is a tremendous minimization of the situation with Long Haul COVID. Do millions reduce their work or drop out of the workforce “permanently” after a typical seasonal flu? No. There aren’t enough sick days that you can take when you have Long Haul COVID, They’re not the same. They shouldn’t be compared as if they are. Plus, I don’t know if I mentioned this but those a respiratory viruses and COVID is more vascular. Get Long COVID yourself doc and then come talk to me and the millions other suffering about how it’s so similar.

One thing I would like studied, that I haven’t seen so much, is a severity of symptoms breakdown for COVID Long Haulers. What I’m envisioning is 5-10 different groups of COVID Long Haulers, so we can get an idea of what percentage of COVID Long Haulers fit into what severity level. Not all Long Haul COVID is created equal. Someone suffering mightly for 3 years straight is different than someone that had a little fatigue for a few months. This would be good to know.

“The second study, in Lancet Regional Health, looked for long Covid in 5,086 children 11 to 17 and found that symptoms present during infection rapidly declined over time. The researchers found that among children who tested positive and negative for Covid “prevalence patterns of poor well-being, fatigue and Long COVID”—defined by its symptoms without the need for a past diagnosis of the disease—“were broadly similar.” (The study also found that loneliness in children increased steadily in the year after Covid illness.)”

We can agree that children do handle COVID better in general (as one would expect): get less Long Haul COVID, get less serious complications with COVID, at least that’s how it seems now, but even with asymptomatic infections there can be damage, such as the 54% of cruise ship asymptomatic cases that had lung damage.₄ “The analysis of the positive cases from the cruise ship Diamond Princess revealed that 73% were asymptomatic, of whom 54% had lung opacities on CT, usually showing a prevalence of ground glass opacity (GGO) over consolidation. A comparable prevalence of abnormal chest x-ray in asymptomatic and minimally symptomatic patients was reported by a radiologic center in the first Italian COVID-19 epicenter.”

You can look at the study the doctor quotes yourself here to check if he is misstating things greatly again.₅ It might be a safe assumption at this point.

What will getting COVID over and over mean for the future of these kids? They’re in an environment at school where it’s unavoidable. Chalk it up to another thing we can’t really know until more time passes.

“The National Institutes for Health has been intensely focused on studying long Covid, spending nearly $1.2 billion on the condition. To date, the return on investment has been zero for the people suffering with it. But it’s been terrific for MRI centers, lab testing companies and hospitals that set up long Covid clinics. I’ve talked to the staff at some of these clinics and it’s unclear what they are actually offering to people beyond a myriad of tests.”

Ah the beloved NIH. Everyone’s favorite at the moment. Good time to probably leave suddenly if you’re one of the top dawgs at the organization. They have had quite the influx of cash, minus much help for COVID Long Haulers. I would say no one has been as helpful for Long Haul COVID as other actual long haulers. Speaking of MRIs, did you see this study Dr. Marty McFly?₆ Here’s a tidbit from it, “We identified significant longitudinal effects when comparing the two groups, including (1) a greater reduction in grey matter thickness and tissue contrast in the orbitofrontal cortex and parahippocampal gyrus; (2) greater changes in markers of tissue damage in regions that are functionally connected to the primary olfactory cortex; and (3) a greater reduction in global brain size in the SARS-CoV-2 cases.” Ehh, all respiratory diseases do this! Had this with the Flu! Fuhgeddaboudit! Never mind the gut biome dysbiosis being found, other organ damage, and vascular and neurological problems in COVID Long Haulers.

Should COVID Long Haul sufferers not be investigating what is going on in their bodies? These Long COVID clinics do offer some help to patients, depends what clinic you go to. The one I went to was just helpful for testing and finding specialists. The help is generally pretty minimal from what I’ve seen and heard. Testing is definitely a large part of it, and rightfully so. We agree, COVID Long Haulers aren’t getting sufficient help in terms of solutions. You downplaying the problem in a disingenuous ways is the opposite of helpful.

“An Annals of Internal Medicine study ran an exhaustive battery of tests on 48 people with long Covid and 50 people without. The researchers found no biochemical or physiologic abnormalities in people with long Covid. “Levels of plasma inflammatory markers, levels of biomarkers for cardiac and central nervous system injury, and presence of select autoantibodies were similar between groups,” they concluded. The only medical factor that predicted long Covid was pre-existing anxiety, associated with a 2.8 times increased risk of developing long Covid.”

All aboard the it’s all in your head train! Next stop, Dr. M&M’s vacant space in his skull. I kid. I’m sure there is something in there. We should do a brain scan to check. Wait, what did I say about brain scans earlier? Oh yeah, those with Long Haul COVID have some scary stuff occurring in their heads. Losing grey matter and shrinking brains, ahhh no big deal! Let’s focus on the pre-existing anxiety that very well could have existed due to a physical, chemical, or gut problem that was never solved by a gaslighting doctor and than got exacerbated by Long Haul COVID. Imagine that non-fiction story occuring! Hmm. Don’t worry though, your Bilirubin was within this wide range though, so you’re perfectly healthy. I guess doing a test for micro clotting would just be silly!


First things first, “Table 3. Selected Symptoms, Physical Findings, Questionnaires, and Cognitive Testing Results.”₇ I’ll post it below. There’s a stark contrast between the control group and the COVID-19 cohort group in symptomatology which matters much more than whatever the far from infallible and not exactly comprehensive testing might say. The lower the p-value, the greater the statistical significance.


Here is part of the study Dr. Makary cherry picked, “To address the possibility that persistent activation of the immune system might play a role in the pathogenesis of PASC, plasma samples from a subgroup of participants were selected for inflammatory biomarker analysis. Because recent vaccination could affect plasma levels of inflammatory biomarkers and confound the interpretation of results, we selected samples from a subgroup of 48 participants with PASC, 52 without PASC, and 50 control participants who had not received a SARS-CoV-2 vaccine before blood sample collection. No significant differences were detected between groups in plasma levels of macrophage inflammatory protein-1β, interferon-γ, tumor necrosis factor-α, programmed cell death ligand-1, interferon γ–induced protein 10, interleukin-2 receptor α, interleukin-1β, interleukin-6, interleukin-8, RANTES (regulated on activation, normal T cell expressed and secreted), and CD40.”

From what I’ve been told by a few doctors is the typical testing for cytokines, autoantibodies, chronic pathogens, and other things is not good. On top of that, the majority of the time COVID Long Haulers who have done Dr. Bruce Patterson’s cytokine and chemokine panels have found levels that were off, myself included. Why is that directly going against what is said in this study? Maybe the sensitivity of the testing, maybe the timing of the test (about half the COVID-19 Cohort were enrolled before I was at my illest which is significant because my case is not uncommon amongst long haulers and I got sick originally in the initial wave in March 2020), maybe the severity of the illness in those seeking taking test (no one super sick wants to volunteer for a study that doesn’t offer solutions), perhaps they’re not looking at the right auto antibodies (like CellTrend is), etc. Things I’ve seen COVID Long Haulers complain were off in their tests at least eventually were cytokines, chemokines, electrolytes, iron, ferritin, cholesterol, blood glucose, various autoantibodies, blood micro clotting, table tilt test indicating POTS, lung abnormalities, brain scan abnormalities, mast cell activation syndrome, small fiber neuropathy (most LHers have this based on polls), etc. Many people have to get highly specialized or unusual testing performed to find their more significant issues if they can find them at all via tests.

Long Hauler test results seem very dependent on the time you get the actual testing done (as Long Haul COVID is a roller coaster of up and down with shifting problems). For instance, I was positive for Anti-Cardiolipin as a COVID Long Hauler, then I wasn’t when I was going through a better period, and then I was again positive later on. I’ve heard this happening in similar occasions, such as long haulers with ANA. This is what partly makes testing very complicated for a COVID Long Hauler. Plus, many of us start out with mild symptoms that crescendo over time. For instance, my worst period was probably 8 months in when I had severe neurological problems. Test me a week before that and it probably wouldn’t show, and I wouldn’t have brought it up as a symptom to my doctor. Trying to simplify something that’s not possible to really simplify in order to fit your narrative is not a good look. You as a doctor should understand what I’m saying, whereas someone else outside of the chronic illness or medical realm might have an excuse. You’re either being dishonest on purpose or you don’t really understand what you should. Not great choices for you Dr. Mark Makary.

“The NIH hasn’t invested nearly as much in studying masks, natural immunity, vaccine complications, boosters in children or even vitamin D, which was found last month to lower Covid mortality—a study that tragically came two years too late. The most stunning absence of Covid research is in children. After imposing tremendous restrictions on tens of millions of healthy children for nearly two years, no government study or public-health official can tell us how many otherwise healthy children have died of Covid, or even if any have. Dedicating research dollars to magnify Covid complications while ignoring other pressing Covid research questions continues the politicization of the disease.”

The doc and I can agree some, some, not a lot. Maybe we don’t have order that brain scan for him. The NIH has not invested enough in certain things. Better than investing though would be accomplishments, answers, and solutions. Why invest a lot in studying masks when the CDC will just say don’t wear masks, wear masks, don’t wear masks, wear masks, over and over? Why invest much in natural immunity when they have a vaccine to push? Why invest in finding vaccine adverse events when they ain’t tryin’ to hear that? Alternative, low cost, and non-big pharma options don’t help make the right people a lot of cash. Crony capitalism at the expense of the majority’s health if I ever do say, and I do say so. It’s never been more evident. Ever facet with power is too intertwined and in bed with the other.

There are COVID death numbers for children/teenagers. For instance, there have been 1,378 reported 0-17 year olds that have lost their lives to COVID in the United States.₈ Children get Long Haul COVID too. About 5-10% of the time studies say.₉ Continuing reinfections sure may be a problem. This is not a one or the other situation. All of these things need to be studied, including and especially, Long Haul COVID.

“Last month Food and Drug Administration Commissioner Robert Califf tweeted that “preliminary epidemiological findings point to the distinct possibility of the bivalent vaccines and antivirals reducing risk of long Covid.” If Pfizer tweeted that, it could be fined for making a claim beyond an FDA-authorized indication. Mr. Califf’s Twitter thread included no data. The bivalent vaccine was authorized by the FDA without a vote of its scientific expert advisory committee.

White House Covid coordinator Ashish Jha declared last month that the science supporting the bivalent vaccine is “crystal clear.” In fact, it was authorized based on data from eight mice. To date, there has been no randomized trial data on the bivalent vaccine. Its authorization was reamed through by regulators over the objections of experts like Paul Offit, who argued that it should be evaluated as a new medication.”

Doctor is on a roll. New nickname is Dr. BLT. Until he strikes up the gaslighting, completely misstating studies band again. The FDA & Pfizer really have their game on point. It reminds me of Apple sitting down their corporate tax lawyer helping them find all the tax loopholes and then Apple and their execs donating money to political campaigns.

Crystal clear science here sounds like a crystal that is full of inclusions. “Trust the science” they proclaimed, even when there wasn’t really any. Should make you raise an eyebrow. If I wrote this stuff down for a book the publisher would say it’s too ridiculous of fiction to publish. Thank you Paul Offit for being the rational one in the room, at times.

There is data I came across saying the the vaccine, prior to the bivalent shot, could reduce Long Haul COVID by 15%.₁₀ Of course, the vaccine could cause a very similar Long Haul COVID like syndrome, for lack of a better word, so is that 15% really 15% in the grand scheme of things? I suppose that only about 33% taking at least 3 COVID Vaccine Shots and about 12% taking the COVID Bivalent Boosters in the USA represents how many people are taking note of the nonsense they are told and the injuries. (about 80% of the USA have had 1 shot, about 39 million have had 1 shot and not 2, hmm).₁₁&₁₂ Whatever the reason, the vast majority are not getting COVID Boosters suggesting something is majorly wrong.

“The NIH’s fear-mongering around long Covid has also been used to argue for keeping Covid restrictions in place. In November, the Biden administration issued a report on long Covid stating that mask mandates and vaccination “protect people from infection or reinfection and possible Long COVID,” despite no scientific evidence to support the claim.”

Yes, it does seem the NIH, which I felt a while ago, are trying to “influence” people into getting the vaccine. The public health organizations didn’t catch on to Long Haul COVID until later in 2020. Then they seemingly used it as a football even later than that. The harshest of the restrictions had mainly passed by the time they were really speaking up about the condition in a concerning way. Where exactly are there mask mandates at this point? Heck even medical facilities are dropping vaccine mandates as they won’t have enough workers otherwise. The COVID Vaccines, as they exist now, are dead. Numbers will only to go down more by shot 4 or 5. Restrictions don’t seem like the reasoning as restrictions have dwindled. Vaccine uptake seems like the only thing left they might try to pump up by talking about Long Haul COVID. That doesn’t mean though that Long Haul COVID isn’t a massive problem.

I’m of the mind that people should be wearing masks (good ones and properly). It’s wishful thinking to think we will go back to mask wearing at this point. The CDC and NIH are largely to blame for that. Here is a study showing a reduction in testing positive based on type of mask worn.₁₃ 83% reduction for those that wear a N/95 or KN95 properly. If Biden doesn’t like the messaging on masks, he should probably fire the CDC Director he appointed. Just an idea.

“Given the broad reach of population immunity to Covid today and the less severe nature of the illness, long Covid is less common and less severe than it was in 2020 or 2021. In my experience treating thousands of patients over two decades, people are forgiving if you are honest with them. If public-health officials want to regain the public trust, they should show more humility when it comes to Covid, including long Covid.”

This is far more complex than what he’s saying. What a shocker, I know! Yes, there is more immunity now amongst the population, but at the same time we have variant after variant that’s mutating to evade immunity. The sickest and oldest probably perished or got severely ill in 2020, which would skew COVID severity numbers in upcoming years. COVID does seem to be less severe, so I’ll give him that, but it’s a big problem still. It’s still mutating, it’s way more infectious now, most aren’t taking precuastions, and there are a parade of variants in 2022, unlike in 2020. There are more approved and unapproved treatment options, which potentially help with a reduction in severity and Long Haul COVID, unlike in 2020. Just stating some of the variables and complexities in analyzing this stuff that Doctor Ms doesn’t delve into.

It’s great to be honest, but doc you’re not honest. Let’s get real. You just hoped nobody would look deeper into the studies you quoted to make your point. You were wrong. What you were stating that the studies said was way off base. You’re overcorrecting. A common problem in 2022. Minimizing Long Haul COVID because you see it being misused by health officials to manipulate people into doing something they want them to do (get the vaccine) is wrong. They may be trying to scare people, but that doesn’t mean Long Haul COVID should unfairly diminished by you at the same time. It’s not an either or situation always. I don’t understand why people don’t get that! It’s not COVID bad, COVID Vaccines automatically good or vice versa. It’s not always the government grabbing on to something to influence people thus therefore whatever they’re talking about must really be a minor problem or completely fake. Dr. Makary seems to be falling into the typical my side vs your side battle in these discussions. It’s not that simple.

We have a problem. We have “two” sides (in reality there are many many many more than two sides, but for sake of argument let’s go with two). Neither of which care about anything other than proving what they already believe, instead of caring more about trying to analyze reality fairly, obtain better/good data, and the people suffering partially because of everyone’s thin skinned pridefully protecting your opinion at all cost dishonest arguments. This is a pandemic with various serious health concerns, yet the BS has never been more pronounced! All of you disengous people on both sides, not just Dr. Makary, should be ashamed.

“Dr. Makary is a professor at the Johns Hopkins University School of Medicine and author of “The Price We Pay.”

Devin Russell is not a professor at Johns Hopkins University School of Medicine nor an author, but will gladly review any studies for any professors or MDs at Johns Hopkins that struggle at interpreting them.


CITATIONS:

  1. UK Long Haul Study (used by Dr. Makary) – https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/technicalarticleupdatedestimatesoftheprevalenceofpostacutesymptomsamongpeoplewithcoronaviruscovid19intheuk/26april2020to1august2021
  2. American Medical Association Study (used by Dr. Makary, comparing COVID positive patients vs. COVID negative patients) – https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2799116
  3. 2-4 Million Out of Work With Long Haul COVID – https://www.nbcnews.com/health/health-news/long-covid-keeping-4-million-people-out-of-work-rcna44807
  4. Asymptomatic COVID Led to Lung Damage in 54% – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7462877/
  5. COVID Study on Younger Individuals (used by Dr. Makary) – https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(22)00250-2/fulltext
  6. Long Haul COVID Brain Changes Study – https://www.nature.com/articles/s41586-022-04569-5
  7. Annals of Internal Medicine Study Using Various Tests to try to Find COVID Long Haul Differences – https://www.acpjournals.org/doi/10.7326/M21-4905#f1-M214905 & https://www.acpjournals.org/doi/suppl/10.7326/M21-4905/suppl_file/M21-4905_Supplement_2.pdf
  8. USA COVID Deaths By Age – https://www.statista.com/statistics/1191568/reported-deaths-from-covid-by-age-us/
  9. Children in USA Get Long Haul COVID 5-10% of Time – https://www.nbcnews.com/health/health-news/new-study-estimates-many-children-will-get-long-covid-rcna39528
  10. COVID Vaccination Study Showing 15% Reduction in Long Haul COVID – https://www.cidrap.umn.edu/vaccines-lower-risk-long-covid-15-death-34-data-show#:~:text=%22Vaccination%20against%20the%20virus%20that,%2C%22%20the%20study%20authors%20wrote.
  11. CDC Vaccination Data – https://covid.cdc.gov/covid-data-tracker/#vaccinations_vacc-people-booster-percent-pop5
  12. Only 12% Have Taken Bivalent Booster in USA – https://www.wrtv.com/lifestyle/health/low-covid-19-bivalent-booster-rates-among-hoosiers
  13. COVID Mask Study – https://www.cdc.gov/mmwr/volumes/71/wr/mm7106e1.htm
Long COVID

When Athletes & The Famous Get Long Haul COVID

  • December 1, 2022August 12, 2023
  • by Devin Russell

When Athletes & The Famous Get Long Haul COVID


This list includes 159 athletes, famous, media, political, and prominent people who have contracted Long Haul COVID.

(Updated 8/12/23 – 3:33pm EST). If you know of anyone else that should be added to this list please comment below.

https://docs.google.com/spreadsheets/d/1oz8Vvg3G6D4b2RS1SrG6AJb3J4ghArxsSthh7N330ao/edit?usp=sharing

COVID

My Master Treatment List Rankings

  • July 18, 2022July 30, 2023
  • by Devin Russell

My Master Treatment List Rankings


It took awhile, but it’s here. My master treatment list with rankings and additional information is “finished.” As finished as it can be until I try something else. With any luck though I won’t have to do one more new thing for Long Haul COVID. This is an extensive list with 150+ medications, supplements, treatments, etc.. If I remember anything else I’ve tried that’s not on here, I will add it, but as of now, all the important things are present. As a bonus, I created a tab for things I have not tried yet, but are of interest to me or other Long Haulers. You can see the list below:

https://docs.google.com/spreadsheets/d/1CXrfiD3Eb0E0nKiED1duDcWYrgyVw0A1R2VKgzN_MvU/edit?usp=sharing

Some of the most vital things I’ve done are, in no specific order, other than alphabetical because it will annoy me otherwise:

  1. Aspirin – helped with clotting.
  2. Atlas Orthogonal Chiropractor – was useful for my head/neck inflammation.
  3. Fluvoxamine – vital for my head/neck inflammation and brain fog.
  4. Hyperbaric (Soft & Hard Chamber) – helpful for general inflammation, headaches, & neuro issues.
  5. Ozone (IV) – saved me, brought me back to life when I felt I was going to die.
  6. Prednisone – was tremendous important for my racing heart/heart inflammation.
  7. Regeneron – beneficial for my long haul when I was at a road block. Much better after.
  8. Tollovid – helped further with my long haul & also has been vital for when I get reinfected.
Long COVID

Tollovid Q&A with Todos Medical

  • May 28, 2022July 30, 2023
  • by Devin Russell

Tollovid Q&A with Todos Medical


1. Does Tollovid prevent viral replication systemically? Does it cross Blood Brain Barrier?

Our belief and observations are that it inhibits the 3CL protease systemically. We do not have BBB studies, however in instances with high 3CL content it is expected the BBB is “leaky” any many things get through. We have seen symptomatic benefits associated with reduction in 3CLpro in the brain, but cannot confirm this without radioactive co-location studies which are not really the best ways to go in this patient population, so we are relying on symptomatic benefit.

2. Has Tollovid been tested with COVID Long Haulers or acute patients? 

Tollovid has primarily been used to date in an acute setting of high 3CLpro content, however we are now seeing it used in cases of persistent 3CLpro content. We expect it to eliminate 3CLpro in either circumstance.

3. Is Tollovid considered similar to Paxlovid and thus a good option if you can’t get that when you have acute COVID?

The mechanism of action of Tollovid is the same as Paxlovid (although we target the receptor binding domain of the 3CLpro – the active site, whereas Pfizer does not).

4. Can Tollovid be taken long term? If it can be, how long and at what dose? Any toxicity or side effects with it? 

We have not observed any side effects with long term use of Tollovid, however we do not have formal studies so cannot confirm this. We have not found side effects other than soy allergy to the soy lecithin in the product.

5. What’s the difference in the Tollovid Daily and Max?

Max has much greater 3CLpro inhibition capabilities than Daily … approximately 5-10x stronger.

6. Any issue using Tollovid long term in terms of a reduction in effectiveness against COVID?

Doubtful that 3CLpro will mutate given the target is a derivative of SARS-CoV-2, and therefore no evolutionary pressures on it. This target has not mutated and is deemed ‘canonical’ because it appears variant. The biggest mutation risk is likely Molnupiravir.

7. Does Tollovid work on other viruses? Would it help with EBV, Herpes, etc.?

It inhibits the 3CLpro. You can see the areas in which 3CLpro is present. You can scroll down to the subviruses associated with it. Including Nidoviruses, Picornaviruses, and Caliciviridae.

https://en.wikipedia.org/wiki/3C-like_protease

8. Do you think taking Tollovid after a course of Paxlovid makes sense to combat the rebound effect many. myself included, face?

That may make sense as it appears there is sometimes significant residual 3CLpro following Paxlovid.

9. Are there any contraindications with Tollovid? 

None that I’m aware of.

10. Does Tollovid change the color of your stool (does it make it darker or black)? 

Yes, it makes the stool darker by virtue of the Gromwell Root. This is completely normal and no side effect. Gromwell is also used as a natural purple colorant.

11. What is the difference between Tollovid and Tollovir?

The 3CL protease inhibition mechanism is the same in all three [including Paxlovid] (although Tollovir and Tollovid target the active site of the 3CLpro). Tollovir has an enhanced key anti-cytokine/anti-inflammatory component that very much differentiates it from Tollovid/Paxlovid.

12. Have you noticed people having Herxheimer reactions to Tollovid? 

We haven’t had that specific diagnosis, but have heard of people having an initial ‘reaction’ that subsides within 24h followed by benefit. We are looking into this further.

13. What’s the recommended dose for Acute COVID and Long Haulers with COVID? 

The recommended acute dose (Tollovid Max 3 pill 4x a day) is recommended for people looking to dramatically reduce their 3CL pro content. How long someone has had 3CLpro in their system may be different than ‘how much’ and ‘where’ so we recommend going with the Max dosing to start and then based upon resolution transitioning (at whatever pace a person feels right for them) to the maintenance dose. 

14. People in Europe are asking me if and how they can get this. How can non Americans get Tollovid?

People have been ordering from Europe, and it gets through customs. Often, they charge a local duty based on the commercial invoice. Hope this helps.

Long COVID

Tollovid aka CovidRid?

  • May 23, 2022July 30, 2023
  • by Devin Russell

Tollovid aka CovidRid?


Yes, the title for this article is lame, but don’t worry I know it is lame, so it’s ok. With that being said, for almost 3 weeks I’ve been on Tollovid. I’ve had a significant shift in my health for the better, but it’s not that simple. It never is. As I reduce the dose I’ve felt what seems like a rebound effect, which has been seen in some who take Paxlovid. (https://www.cnn.com/2022/05/10/opinions/paxlovid-rebound-covid-treatment-sepkowitz/index.html) It’s something similar to what I also have experienced with Paxlovid and Monoclonal Antibodies, Paxlovid especially. It’s not a negative in my mind, but it’s brought on some different symptoms that I haven’t experienced so strongly in a while. I’m going to provide more detail about all this, and what this rebound feels like below, but first let me explain what Tollovid is for those who don’t know.

Tollovid is a supplement made by Todos Medical. It’s main components are Gromwell Root and Lecithin. It is a 3CL protease inhibitor, similar to Paxlovid, thus it acts as an antiviral agent by stopping replication of SARS-CoV-2, and other Coronaviruses. It also helps with inflammation, circulation, and detoxification, amongst other things, but the 3CL protease inhibitor aspect is the most intriguing to me.

My Tollovid journey started about 20 days ago. For the first 14 days I took Tollovid Max 4x a day 3 pills at a time. That is the maximum dose and they suggest to take that for 5 days straight (seems to be the dosage used for those in an acute situation, but I am a COVID Long Hauler). This went very well. I have more brain power, energy, was in a better mood, and was much more active. My inflammation in my torso in particular decreased and my urine color changed for the better and stool became more normalized. The symptoms I had at the time were mitigated a lot. On top of that, I’ve also been coughing up a lot of phlegm. The Tollovid really kicked in in a couple of days and the noticed benefits continued. During this period I was amazing inspired to go through all my stuff, which was a lot, to organize and get rid of things. This was never a thought before taking Tollovid.

On to Phase 2, finding the correct reduced dose for me. I’m still in this phase and it’s complicated, and interesting. Day 15 I decided to drop to the recommended maintenance dose of 2 pills 2x a day which is 33% of the max dose. With this change I experienced what felt like a rebound, very similar to what I experienced the first day coming off of Paxlovid after taking it for 5 days straight. My symptoms shifted and came on strong, up and down throughout the day. With Paxlovid, I had a wild nervous system reaction, increased blood pressure, and had a very tough time for about 2 days, until it gradually dissipated after 7 days. The next few days, after day 15, I increased my dose to 3 pills 2x a day, 2-2-3 pills in a day, and now the past several days I’ve done 3 pills 3x a day, which seems to be working well for me for now. The symptoms I experienced were/are increased inflammation in the head (headaches, pain on side of head), chest, heart, nerves (extra weakness at times, some pins and needles), and joints in particular all worse from the baseline from before I started the Tollovid, but with a big up and down swing throughout the day. It was certainly not as severe as going off Paxlovid cold turkey and it is better now on day 20. The spots affected were the hot spots from the past 2 plus years with COVID, but weren’t exactly the main issues I had when I started the supplement. Phase 3 is how long do I have to take this for and what will be the true maintenance dose.

With Monoclonal Antibodies, which I used for my Long Haul COVID, the symptoms I was experiencing at the time quickly improved, two of which were chest inflammation and joint pain. My neuro symptoms came on strong for about a month, up and down (more up and down than normal). With Paxlovid, used for an Acute COVID Reinfection (and Long Haul COVID), it took away my chest inflammation very fast and helped with the acute symptoms overall. The day I came off I had an extreme rebound effect, that I explained above. That first day off was really difficult to get through. I basically went back to my Long Haul (LH) baseline, with a tiny bit of improvement in my LH, after a week off of the Paxlovid. With the Tollovid, my Long Haul COVID symptoms at the time were also helped quickly and continued to improve while taking the max dose. Once I reduced the dose, I felt what I assume was that dreaded rebound effect. Symptoms shifted and they increased in intensity from where they were baseline with a big up and down swing. They all acted similarly, but they don’t all do the same things, except for one thing that they do.

So what’s happening here? I believe all three of these things were working on persistent COVID-19 virus. What else explains these similar reactions? What is the cross-over between these 3 things other than they are working against the virus? mAbs are an infusion of antibodies which will help combat the virus. Paxlovid and Tollovid are 3CL protease inhibitors which prevent viral replication. Tollovid has various benefits, but do the other 2 have various benefits? To me this screams persistent virus, which I have believed all along. It’s hard to figure out exactly why I’ve had these reactions, meaning what is actually going on in the body to get that rebound, increased inflammation effect, but it is not uncommon with other viruses and medications. Tollovid does seem to give me a little herx right after I take it, another indication I have persistent virus. A herx is a die off reaction by the way. In the very least to me it indicates Covid can persist in some, and may be a big reason for Long Haul Covid. I’ll continue to take Tollovid and provide an update in the future.


UPDATE – 7/30/23

Still taking Tollovid to this day. I’ve settled on 3 pills 2x day, but when I’m running low I take 3 pills 1x a day, and even that helps me. I can notice when I have increased symptoms that after taking Tollovid they will reduce in short time. If I don’t take Tollovid for a period, symptoms will increase (not as much as they used to). I’m much more functional now and currently on an RV trip creating a docuseries called “Castaways.” Tollovid expensive, but at a maintenance dose it’s manageable, and for me it’s a very valuable part of my regiment. I wouldn’t say it’s a CovidRid, but it’s very much helping with what I assume is persistent COVID and with coinfections I’m quite confident I’ve had.

Long COVID

TLC – Treat Long COVID – Conference Day One…

  • June 19, 2021July 30, 2023
  • by Devin Russell

TLC – Treat Long COVID – Conference Day One Notes (6.19.21)


All notes below are thoughts expressed during a Long Haul Conference on 6.19.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete. Please double check notes with video, when that is made available.

Dr. Bruce Patterson — COVID Long Haulers & IncellDX  

  • Immuno Watch App coming out in a month to track symptoms, etc. 
  • Immune System Dysfunction can occur when virus not cleared
  • IncellKine Kit can measure cytokines and chemokines
  • CD14-CD16% shows increase in monocytes
  • CD19 shows B cell increase
  • CD40, VEGF show vascular inflammation
  • IFN-Y & IL-2 important Long Hauler markers
  • There is now a lab in Chicago (and I believe Colorado) doing the IncellKine testing
  • 6,000 tested so far and Dr. Patterson and his cohort are treating 50-100 Long Haulers a week
  • Register on www.covidlonghaulers.com
  • There is now a code for insurance reimbursement for Telemedicine
  • Pushing for more funding for those who cannot afford
  • Long Haul COVID centers around vascular inflammation
  • CD14+-CD16+ elevated in Long Haul COVID means antigen presenting and monocytes scavenging
  • CD14Low-CD16+ means antigen present, associated in some way with vascular and endothelial systems
  • CCR5^ (CX3 and CR1 ???) less Ace2, CD14+-CD16+
  • Cells might not be infected anymore, monocytes are probably scavenging endothelial cells that contain SARS2 protein
  • Find these monocytes in Long Haulers up to 15 months past initial infection
  • COVID protein stimulating immune response
  • Protein can cross the BBB (blood brain barrier) and it binds to endothelial cells and causes vascular inflammation
  • CD14Low-CD16+ S1 protein activating immune system, vascular inflammation — Maraviroc for CCR5^, Statins interrupt fractalkine receptor
  • S1 protein confirmed
  • Inhibit non-classical monocytes by binding
  • Angiogenesis = VEGF^ 
  • Vasodilation may = head fullness, headaches/migraines
  • Monocytes mobilized by exercise
  • Blood vessels inflamed, systemic issue, nothing more systemic than blood vessels
  • Reservoirs of COVID form during acute illness which probably accounts for many Long Haulers, immune system disrupted
  • Virus can be active despite negative nasal swab (can be somewhere else in the body)
  • Had one patient RNA positive for the virus at 15 months (virus may not be replicating though)
  • Aggressive treatment with initial infection would help
  • Believes Borrelia (Lyme Disease) protein membranes scavenged by monocytes possibly for years, believes this may cause Chronic Lyme, no Lyme to be found — (NOTE: Having had Chronic Lyme and managed a clinic that was very Lyme centric, I would disagree that there is no Lyme active, as I reacted to antimicrobial treatments and they eventually gave me my life back after 10 years (when I found the right one). I even feel that COVID is active still as the same areas keep being affected for me. If the protein was just circulating wouldn’t I be affected all over instead of very specific spots? Maybe the virus and Lyme are just really hard to find in testing. I don’t know, food for thought. I think Dr. Patterson is great. He’s doing some amazing things, but if he experienced this stuff like I have, I wonder if he would take a different viewpoint, despite the testing. Both Lyme and COVID are quite complex, so anyone trying to get to the bottom of either of these things deserves a lot of credit for that massive undertaking, and stressful undertaking.)
  • Testing will be available soon in Europe for cytokines & chemokines — Pilot is being done in Madrid

–

Dr. Syed Mobeen — Drbeen Medical Lectures on YouTube & drbeen.com

  • Dr. Been is a software engineer in addition to being a doctor
  • Works with FLCCC
  • Early aggressive treatment would help
  • Likes statins, steroids, Luvox (Fluvoxamine), and Ivermectin
  • Possibilities: Viral Hit and Run causing immune dysregulation — RNA Less Viral Debris (Proteins), monocyte repair calls for eating up of broken tissue, antigens, etc. — Virion Debris persistence in other tissue, after RNA cleared out — MCAS starting up or unmasked — Macrophage Activation Syndrome (MAS), non-classical monocytes
  • Multi-system issue — Ivermectin can’t cross BBB
  • Sometimes temporary improvement with Ivermectin, helps with inflammation
  • Ivermectin 0.2mg/kg to 0.4mg/kg of body weight
  • 3 out of 100s of Dr. Been’s patients became Long Haulers
  • Correct vitamin levels important
  • Luvox 50mg 2x a day for 1-2 weeks (NOTE: a lot of Long Haulers start slow and build up. I had some side effects, so I’m glad I did, but they went away after a few weeks) — use if you have neuro symptoms — can cross BBB — not being used for psychiatric reasons by Dr. Been — Sigma 1 mechanism, anti-inflammatory for neuro
  • Ivermectin taken 5 days then weekly for 2 months
  • Ivermectin disrupts or binds with spike protein, changes macrophage and monocyte behavior (NOTE: For everyone’s understanding below is the definition of a monocyte and macrophage)

Monocytes are the largest type of white blood cells and play an important role in the adaptive immunity process. Monocytes typically circulate through the blood for 1–3 days before migrating into tissues, where they become macrophages or dendritic cells.

Macrophages are monocytes that have migrated from the bloodstream into any tissue in the body. Here they aid in phagocytosis to eliminate harmful materials such as foreign substances, cellular debris, and cancer cells.

  • No Ivermectin for those under 2 years old, pregnant, or compromised BBB
  • If dizzy then reduce dose and move to evenings
  • Lymphatic Massage (around neck/head) and Spinal Pumping can reduce neuro symptoms
  • Pulse steroids for pulmonary system
  • If Fluvoxamine (Luvox) makes symptoms worse think MCAS
  • Steroids 0.5mg/kg for days, 0.25mg/kg for 5 days, 0.12mg/kg for 5 days (taken in am) — may have to repeat after a month
  • If bounce back to baseline symptoms after steroids go to Ivermectin or Fluvoxamine
  • For MAS (Macrophage Acr — Take Vit C 500mg 2x a day, Omega 3 4gm/day, Atorvastatin 40mg/day, Melatonin 2-10mg at night (increase over time), D3 2,000-4,000 IUs Daily
  • MCAS (Mast Cell Activation Syndrome) poked by COVID or unmasked by COVID
  • For MCAS, Type 1 Antihistamines: …. Type 2 Antihistamines: …. Mast Cell Stabilizers: …. LDN & ….
  • FLCCC.net
  • Majority of patients feel worse with vaccine (as per Dr. Tina Peers)
  • Conjecture as to why vaccine helps some and has a negative impact on others — 10-20% seem helped possibly because immune system not active enough to clear out viral debris and immune system get boosted to help clear that — Negative impact may be because vaccine produces spike protein, causes non-classical macrophages, spikes stay causing Long Haulers because of the vaccine

–

Dr. Lawrence Afrin — Mast Cell Activation Syndrome Expert

  • MCAD (Mast Cell Activation Disease)
  • Allergic diseases = allergy + inflammation
  • Mastocytosis = MC neoplasia (abnormal growth of tissue) + allergy + inflammation
  • MCAS (Mast Cell Activation Syndrome) = inflammation + allergy + aberrant growth (Dystrophism)
  • Case Study (non-COVID and Long Hauler): woman in her 30s notices migratory rash — over time has fatigue, itching, vertigo, falls, evals negative — eventually mildly elevated hemoglobin, polycythemia vera (PV) diagnosed incorrectly — steadily worsened with migratory GI symptoms, labile BP/pulse (POTS), poor healing, episodic shortness of breath, frequent upper respiratory “infections” with no infectant ever found, rashes to all antibiotics
  • Serum tryptase, urine N-methylhistamine normal, marrow and rash biopsies show no mastocytosis
  • sl. ^ urinary prostaglandin D2
  • EGD/colonoscopy normal, but biopsies taken anyways — all textbook normal on H&E, but on IHC …
  • CD117 staining showed MCAS
  • Diagnosis was “atypical mastocytosis” —- Low-dose Imatinib begun, 100mg/d for 1 week then 200mg/d — First week tolerated fine, but no response and then, on waking the morning after the fourth dose of 200mg all symptoms were acutely gone, improvement sustained more than 12 years now, all labs normalized, and resumed exercise and full time work
  • Case Study (non-COVID and Long Hauler): woman in her 50s with worsening fatigue and severe anemia — diagnose with idiopathic pure red cell aplasia (PRCA confirmed) — needed 3 units of blood every 2-3 weeks to maintain merely half-normal hemoglobin (Hgb) level
  • 5 years later: ROS pan -+, uPGD2 ^^^, diagnosed with MCAS
  • Antihistamines: Good Hgb ^ in 4 weeks, no transfusions
  • Imatinib 200mg/d added: Hgb normalized in 6 weeks
  • “PRCA” relapsed 1 year later — tried cromolyn and in remission again in 4 weeks
  • Case Study “Burning Mouth Syndrome” (non-COVID and Long Hauler): woman in her 50s with new constant burning pain throughout GI tract, pain score 10/10 in mouth
  • Extensive evaluations only found mild chronic stomach inflammation and finally, a 100 fold elevated chromogranin A (CgA) (wasn’t on PPIs [Proton Pump Inhibitors])
  • Top 5 US NE Cancer experts unanimously thought because ^^CgA that must be due to NE Cancer, so keep looking
  • 5 years later — revisited old gastric biopsy with CD117 staining, showing ^^MCs (but not in pattern suggestive of mastocytosis) — diagnosed with MCAS
  • Antihistamines/NSAIDs caused pain to decrease to 1/10 overnight
  • MCAS found in every subsequent “idiopathic” BMS patient Dr. Afrin has examined — different abnormal MC mediator patterns in blood/urine in different patients — ^MCs in GI tract biopsies when checked — All responding to various MC-targeted therapies

TO BE CONTINUED — (Still haven’t received complete video from the organizers)

Long COVID

Luvox, Luv It – My Brain on Fluvoxamine

  • May 6, 2021July 29, 2023
  • by Devin Russell

Luvox, Luv It – My Brain on Fluvoxamine


It’s been a brief period of time I’ve been on Luvox, as I call it so I don’t butcher the spelling and pronunciation of Fluvoxamine, but the benefits have been profound. A little more than a week is how long I’ve been taking this SSRI drug, but my brain fog, neck, and head pain/discomfort have improved dramatically after months of stagnation. Mood and functionality are also better. The proof is in the pudding as I’m writing this blog post right now after weeks of not being able to use my brain as much as I needed and wanted. Writing a blog post without being on Luvox would be a daunting task!

My dosing went as such: started at 12.5mg and worked up to 100mg in a week, paused & reduced dose briefly as I was trying to titrate (this is a drug you generally want to taper off), and am now taking 50mg a day split into two doses, morning and night. The number of things I’ve done that haven’t helped much or at all I can’t count on 20 hands, but Luvox was a game changer and quickly (for me and many other Long Haulers, but not everyone). 100mg seems to be the magic dose, but I am going slow with it because of potential side effects such as: lose of appetite, increased anxiety, heart fluttering/uncomfortableness, fatigue, etc. There are also a number of contraindications with Luvox. If you have brain fog, neck pain/stiffness, and brain nerve pain it may be worth it to ask your doctor about the use of this drug. At this juncture, it’s being fairly widely implemented for Long Haulers (and acute patients as well). It’s in favor with some of the top Long Haul Docs as well.

I’d say “I’m Luvin’ It” about Luvox, but I don’t want to get sued by Mickey Ds, so I’ll simply say, so far … I luv it.

UPDATE – 7/29/23

It’s been more than 2 years now and I’m still taking Fluvoxamine. I’m at 25 mg 2x a day. This dose seems to work quite well for me, while not giving me some of the side effects I was having after months on 100mg a day, namely heart pounding & nervous system related. Ideally, I want to not be taking this drug, but it continues to help my head so much that it’s hard to get off of it. I’ve tried a few times to reduce my dose from 50mg a day, but that did not work out particularly well. My cognitive issues crept back some. When I do finally come off of this drug I’ll have to do so very slowly, but for now, it still seems like a necessity.

Long COVID

COVID Long Hauler Discussion with Dr. Bruce Patterson, Dr.…

  • April 12, 2021July 29, 2023
  • by Devin Russell

COVID Long Hauler Discussion with Dr. Bruce Patterson, Dr. Yo, & Dr. Bream Notes (4.11.21)


All notes below are thoughts expressed during a discussion with Dr. Bruce Patterson. Dr. Yo, and Dr. Bream on 4.11.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete.

  • IL-6 and IL-8 cause muscle and joint pain 
  • Some people 3 months out may have active COVID with rna – decreased CD8 
  • CD4 low with hiv
  • CD8 low with COVID — single digits, but should be about 30 
  • 25% of Long Haulers still have low CD8%
  • 4,500 patients registered at http://www.covidlonghaulers.com and are being tested
  • Dr. P has treated 100+ Long Haulers
  • Incredible immune response seen in LHers
  • Elevated Rantees (71% of time) – can happen in any organ
  • Blocking CCR5 important in active COVID and for Long Haulers 
  • CCR5 also works for another reason (published — ???)
  • Rantees is elevated in active COVID and LHers 
  • IL-2, IFN-y (antiviral immune responses) – low in novel COVID (because it’s new to body) 
  • LHers – high IL-2 (fatigue, burning, brain fog, almost anything) and IFN-y 
  • VEGF (fatigue) – most important brain fog marker
  • 79% of LHers have elevated VEGF – possibly due to vasculitis, micro clots, damage to endothelium  
  • Ivermectin and steroids for IL-2 and VEGF 
  • One subject was 95% better with Maraviroc (went from a LHI of 11.4 to 1.3)
  • 50% better with Ivermectin and same with Steroids 
  • 50/50 for Maraviroc as well 
  • Fluvox may help with brain fog and help with blood clots 
  • COVID protein found in LHers in a cell type that migrated from the brain to different parts of the body — easily passes BBB
  • This cell type is mobilized by exercise (possibly why people feel worse after exercise, Dr. P has seen this happen time and time again with Long Haulers)  
  • This cell type expresses CCR5
  • Could inhibit these cells with LL or Maraviroc 
  • $360 for blood panel Dr. P offers at his website above — could be reimbursed by insurance  
  • 14 markers tested, plus severity score, LHI, and put in algorithm 
  • Rantees attracts macrophages and T cells (like a bee to honey)
  • CCR5 regulated by cytokines 
  • CCR5 expression on immune cells going crazy because of cytokines 
  • Women have better immune systems than men, higher autoimmune rates
  • Dr Yo loves Dr. P 
  • All advocacy groups led by women (Not mine Dr. P)
Long COVID

COVID Long Hauler Q&A with Dr. Bruce Patterson &…

  • February 8, 2021July 29, 2023
  • by Devin Russell

COVID Long Hauler Q&A with Dr. Bruce Patterson & Dr. Yo Notes (2.18.21)


All notes below are thoughts expressed during the above YouTube Q&A with Dr. Bruce Patterson on 2.18.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete.

  • Dr. Patterson’s website www.covidlonghaulers.com
  • Long Hauler Index (LHI) was computer created – 0.75 Normal
  • Acute COVID patients have lower scores than Long Haulers
  • 50-66% of Long Haulers have elevated Rantes
  • IL-2 high, INY-y high, and CCL4 low in Long Haulers
  • CCL4’s key immune function is macrophage and nk cell migration
  • Not many differences in demographics regarding Long Hauler Indexes
  • LHI higher the worse the symptoms
  • On Dr. Patterson’s Twitter he talks about Cytokines relating to specific symptoms
  • 79% of Long Haulers have elevated VEGF
  • VEGF relates directly with the symptoms of burning, brain fog, and neuropathy
  • Maraviroc helps decrease VEGF and brain fog
  • Low Dose Steroids for at least 2 weeks in combination with Ivermectin or Maraviroc – 85-90% respond in combo
  • TNF-a, IL-6, VEGF, and Rantes all can be modulated with Maraviroc
  • CD8 low in severe critical COVID
  • CD4 & CD8 seen in viral or cancer response
  • 25% of Long Haulers have low CD8 8-10 months after initial infection
  • CCR5 is the quarterback of the immune system
  • Delta 32 deletion in 50% of population, 20% mild to moderate, 25% of Long Haulers, and 4% of severe COVID
  • Lower doses of Maraviroc for these people with Delta 32 deletion
  • Children: Kawasaki Disease, Rantes high
  • Drugs should be safe with children, high dose of steroids could be bad for children
  • Gut has 98% of immune cells
  • Dormant/reactivity – indicative of reactivation because dominance of type 1 cytokines
  • Reactivated Epstein Barr Virus (EBV) often comes along with elevated B Cells
  • EBV goes with swollen spleen, lymphs, and exhaustion
  • Some Long Haulers have herpes virus(es) reactivate
  • Maraviroc is neurotropic, it crosses the blood brain barrier (BBB) thus that and Leronlimab both get to the brain
  • It’s possible there are COVID viral reservoirs
  • Had trouble finding HIV in testing at first as well
  • Hepatitis C, HIV – Look at CD14, CD18 and it likes to hide in macrophages
  • Eventually with COVID we should be able to tolerate antigens, remove remaining particles and virus, and Dr. Patterson thinks the virus might not be replicating in LHers
  • HIV has tremendous mutation rate, COVID doesn’t
  • COVID may not mutate as much as HIV because there aren’t antivirals for it and/or it doesn’t need to because it’s a novel virus to peoples’ immune systems
  • COVID tests are less than perfect (may have to repeat to get a proper result, and even then)
  • Could be that 30%+ do not build antibodies to COVID
  • Long Haulers have been complaining Quest and Labcorp cytokine panels are not equivalent to IncellDx panel
  • There are reasons for this, but what you want to do is use the same lab as previously and ideally IncellDx’s as it has higher sensitivity and the sample isn’t traveling from lab to lab
  • COVID Long Haul symptoms indicative of immunological abnormalities
  • Dr. Patterson will have 2-3 partner labs up and running soon to analyze cytokines and chemokines (1 lab also operates in Europe)
  • Dr. Gaylis wants to do testing as well (leader of Leronlimab trial)
  • Dr. Patterson prefers precise medicine approach
  • VEGF high, Vasculitis
  • Believes hyper inflammation is causing false positive auto immunity and is causing auto reactive antibodies
  • With real auto immunity he would be concerned with using CCR5 antagonists and steroids
  • Does not believe steroid dose packs are very helpful, prefers 5-10mg of steroids consistently for 2+ weeks
  • The blood panel might help other people with post infectious issues in the future
  • Doesn’t particularly like immune modulators for autoimmunity
  • Dysautonomia markers seem to be positive maybe 30% of the time for people with COVID, hyper inflammation may be causing a false positive
  • App is on the way (in 2-3 months) to track your vitals and to get real time information on someone with Long Haul COVID (BP, VHR, etc.)
  • Has data to show that disability insurance is needed for those with Long Haul COVID
  • Has data to show how people are improving with his treatments (retesting blood)
  • There’s no magic pill – likes using combinations – steroids, Ivermectin or Maraviroc and steroids, etc. (now Statins too)
  • Has a favorable opinion of TA1 (peptide)
  • Believes toolbox of therapies will grow in time
  • Dr. Parikh can see patients in NJ or NY
  • Dr. Yo and Dr. P have interest in Fluvoxamine
  • Low Dose Naltrexone (LDN), anti histamines, and Niacin all can somewhat help LHers
  • Dosing tricky with Ivermectin horse paste — Dr. Yo urging people to be careful getting Ivermectin and other drugs through unconventional means
  • They can help with finding you doctors to prescribe helpful medication (check their website)
  • 30 patients have taken Maraviroc and none of them have had liver issues thus far (Maraviroc has a black label warning)
  • Didn’t believe stem cells were warranted based on abnormalities
  • Has a favorable opinion of IVIG – IVIG can help with autoimmunity and respiratory
  • Dr. Yo was warning about over testing and spending too much money on that
  • Maraviroc is 2 pills a day
  • Cytokines can go all over, even places where not needed
  • Chest pain often Pericarditis
  • TNF-a (depression) and VEGF (burning, brain fog, and neuropathy)
  • IL-6, TNF-a, and VEGF should all go down with Maraviroc and Leronlimab
  • Without high Rantes would not prescribe Maraviroc or Leronlimab
  • CD40 elevated in up to 50% of Long Haulers, micro emboli may exist
  • 85-90% of patients see response in some combination of Ivermectin, Steroids, and Maraviroc
  • Doesn’t expect this to be a lifelong issue that you have to take drugs for
  • Sometimes they see people improved with the above combination of drugs and stay there or they come off of them and revert
  • Lab retests will tell how long the drug course duration will be
  • Fairly convinced COVID can be persistent
  • Publications can be found on website under resources
  • Long Haulers who get 2nd vaccine shot seem to generally feel bad after it
  • Believes 25% of LHers with Delta 32 deletion being reinfected wouldn’t have COVID as severely
  • Leans towards Long Haulers not getting vaccine (nervous about adding fuel to the fire, being cautious)
  • If you do get the vaccine, be prepared for potentially having a major reaction

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Anytown, USA
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Please note Devin Russell and those who represent Covid Castaways do not diagnose medical conditions, treat illnesses, or prescribe medicine or drugs. Anything contained on this website or conveyed via Covid Castaways is not a substitute for adequate medical care, diagnosis, and/or treatment from a medical doctor. It is strongly recommended that prior to acting upon any information gleaned via Covid Castaways or their representatives, you at all times first consult a physician.
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