Is There Really a Cure for Long Covid?

The COVID pandemic is far from over.  It is now morphed into long COVID with millions of people suffering.

Sometimes what seems like a miraculous new medical remedy comes along.  And without government involvement.  Millions of long COVID sufferers now have an opportunity to use a new remedy and judge whether it safe and truly effective.  In contrast, the medical establishment has tried fixing the many diverse symptoms and illnesses of long COVID.

What are long COVID sufferers to do?  There are no easy choices. This analysis and discussion aim to help them make informed and difficult decisions.

Scope of problem

Over the past year or so a great many victims of long COVID believe they have found a medical cure.  There is a lot of skepticism among medical professionals treating long COVID patients, often at specialized hospital centers.

A recent article is “66 hospitals, health systems that have launched post-COVID-19 clinics.”  It noted: “Many hospitals and health systems have created COVID-19 recovery programs, or post-COVID clinics, to support patients who experience lingering symptoms weeks or months after being cleared of the illness — a population now widely known as COVID-19 long-haulers.  Most COVID-19 recovery programs currently involve an initial evaluation and, as needed, referrals to a network of specialists such as pulmonologists, cardiologists and neurologists, among others.“

Several excellent detailed investigative reports examine the system that the impressively credentialed Dr. Bruce Patterson and his company IncellDX have created.  His cure has also built a large following on social media sites.  No surprise.   They want to restore their quality of life.

One big problem in fairly examining the new revolutionary medical solution is the vast array of long COVD symptoms, as shown in the figure below.  Physicians face the daunting challenge of addressing many symptoms successfully to fully satisfy patients.

Estimates are that about 10% to 30% of those who have recovered from COVID infections, even if they were asymptomatic, will get long COVID ailments.

Newly released data for the UK said: “ the Office for National Statistics released data showing that the number of people experiencing symptoms of Covid for three months or longer, known as long Covid, has reached a record high of 1.7 million.  The number of people who have had symptoms for more than a year has increased by 14.4 per cent.  Adjusting for population, that study indicates about 8 million Americans have long COVID.  But a news story said it might be 23 million Americans impacted.

The long-term impacts of coronavirus are stunning.  A December 2021 UK study found that more than 70% of patients admitted to hospital with COVID reported they did not feel fully recovered one year after recovery.

In the UK: “Fatigue continued to be the most common symptom reported as part of individuals’ experience of long COVID (51% of those with self-reported long COVID), followed by shortness of breath (34%), loss of smell (28%), and muscle ache (24%).”  In the US it has been reported that some 85% of long COVID patients experience fatigue, making it one of the most common long COVID symptoms.

My own investigation found that many long COVID sufferers have not received complete cures when using the Patterson system, with only some of their symptoms effectively addressed in what is usually an expensive treatment.  But in truth, the medical establishment also has difficulty obtaining total success.  At best, various specialists attempt to treat symptoms, often without much success.  Many victims struggle to regain their pre-illness normal life, including employment if that is desired.  Serious fatigue in particular and shortness of breath blocks physical activity for many.

Connection to COVID vaccines

To his credit, Patterson has also been assisting people who seem to have long COVID symptoms as a result of receiving COVID mRNA vaccines.  This is reasonable because the common link are the spike proteins from infection and from those vaccines.  There is likely overlap between long COVID symptoms and COVID vaccine adverse health impacts.

Indeed, an article titled “In rare cases, coronavirus vaccines may cause Long Covid–like symptoms” reported:  “Now, a small number of other researchers worldwide is beginning to study whether the biology of Long Covid, itself still poorly understood, overlaps with the mysterious mechanisms driving certain postvaccine side effects.  … William Murphy, an immunologist at the University of California, Davis. proposed that an autoimmune mechanism triggered by the SARS-CoV-2 spike protein might explain both Long Covid symptoms and some rare vaccine side effects.”

Sample user comments

Before delving into details of the Patterson system it is informative to hear from some users of it.

One user of the Patterson system told me this: “I followed their recommendations, found a functional medicine doctor who gave me Rx for Maraviroc [an HIV drug] (very expensive!!!!), Ivermectin and Pravastatin.  The improvement was very gradual and I didn’t recover completely.  I still have anosmia [loss of smell] and still experience various degrees of joints and muscle discomfort. “

A March 2022 news investigation titled “Long Covid patients, in search of relief, turn to private company” reported these comments on their use of the treatment protocol:

“Sara Anaya said the medications recommended by IncellDx and prescribed to her by a local doctor worked, though it took a couple of months.  She still has very little sense of smell.”

“Anne McCloskey said that she remained sick even though IncellDx’s tests suggested otherwise.  IncellDx’s tests showed that she had elevated levels of biomarkers that indicated long Covid.  She started with the company’s regimen, along with several other treatments.  Several months later, a repeat IncellDx blood test suggested she’d largely recovered.  But McCloskey still suffered from fevers, extreme fatigue and memory lapses.  [Patterson] told me that I was his poster child for recovery.  And I’m like, you know, I’m still really sick.”

And here are some comments posted on a YourTube interview with Patterson in 2021:

Sam b:I’ve been on Patterson’s protocol a week. The 4th and 5th days were brutal for my pots! I thought about giving up, but on the 6th day… I started to see a light and now a week in I’m feeling 30% better. My shortness of breath is 95% better, my rashes are gone, my eyes are whiter and my heart rate is starting to go in the 80s when I stand.  This has been 17 months of hell after I got covid last year!!  I’m hoping within a couple of months I’ll feel like my old self.

Alexis:  I’m very sorry to say that while many in the Long Covid community are closely following IncellDx, an equal number of people are very skeptical.  I think they have uncovered some interesting ideas but I don’t think it’s the solution.  I have taken Ivermectin and it did nothing at all.  For some it helped a few symptoms here and there.  Others in my support group have tried statins, most without any real results.  Statins did help one person quite a bit but they had more lung/heart involvement it seems.  Maraviroc made one person worse.  All these meds have been very hard to access.  They have been also using prednisone, or at least they were at one point, which is concerning to a lot of us if we don’t know whether the immune system needs to be ramped up or calmed down.  Obviously, it’s different for everyone and maybe some have been helped, but do be wary.  I don’t know of any people reporting success with this even though they keep saying they’ve had so much success.  I don’t think that Bruce Patterson has malicious intentions.  It might be one piece of the puzzle.  Maybe they will keep looking and find the real answer.  I will say Bruce is one of the few looking at viral persistence. …any research that explores vascular issues is great I think because there really seems to be something to that.

TRACEY G:  In the article I read about Patterson’s Long Covid protocol, he mentioned that he has treated 2,000 people with Long Covid and 98% of them recover… within 6 mos of starting his treatment.  If this is the case, seems like a good number of these 2,000 former patients would have posted something about their successful treatments on social media.  Has anyone seen any such posts?  Or maybe my logic here is wrong?  [Note that Patterson has recently indicated he has treated about 14,000 patients.]

The Patterson/IncellDX system

A special blood sample is tested in their company and based on findings of a number of components an index value and treatment regimen are created that requires the use of several medicines, typically for 4 to 6 weeks, that cooperating physicians prescribe.  The combined costs of the testing, analysis, prescriptions and medicines likely adds up to thousands of dollars that medical insurance may not cover.  Long COVID sufferers who have not received effective treatment from their regular medical providers are often well motivated to spend large sums on what is advertised as an innovative and effective cure for long COVID.

At the core of the Patterson system is the conviction that the condition is caused by inflammation in the vascular system that can be effectively treated with several existing medicines.  The immune state is corrupted by pro-inflammatory cytokines or small proteins.  The large number of blood markers associated with the immune system and cytokines are found in their proprietary analysis and details exactly what the causes of the vascular inflammation are.  In 2020 about a dozen specific blood constituents were identified.

The company says: “Our panel collectively evaluates cytokines known to be involved in chronic COVID-19 and was developed using an algorithm established on a large, long-hauler patient population.  Other labs evaluate only a few of the cytokines in our panel.”  You can see that COVID vaccine sufferers may also have cytokines causing what are often called adverse health impacts.

This is how Patterson explained in July 2021 his initial work:

“Around June of 2020, …we noticed was that people were being released from the hospital, they were alive, but by no stretch of the imagination, was their immune system normal.  And then we started hearing about patients… that were still having symptoms three and four months out— again, that was in the early days.  So we started investigating what their immune profile looked like.  And then we developed a machine learning AI computer program.  And what we did is we compared the immune profiles of acute COVID with, basically, long haulers. And it was completely different and abnormal.”

There were other important observations: “the cells carried a COVID protein all over the body and caused inflammation.  ,,,the cells have a propensity to bind the blood vessels through a pathway called fractalkine.  …the cells are mobilized by exercise and to a person long haulers have exercise intolerance.”  But some victims may be suffering more from other ailments.

Here are more views of Patterson: “As we treat for four to six weeks, what we do when we restore the immune system and immune profile to normal, is then we start while they’re on medication, increasing their exercise and activity.  So we perturb their system, knowing that we’re reducing a number of these COVID containing cells, and we’re keeping them from binding to blood vessels, which is causing the symptoms.  So, we’re increasing their activity, while on medication while we’re following them.  They will get better.  [They] will get back to what you’re used to doing, and this is not something you’re going to have to deal with for a long time.”

Patterson has published research documenting the finding of abnormal levels of cytokines – signaling inflammation in the body, and defining some 14 factors that could be found in blood.

Also noted was “these cells that contain COVID protein, go through the blood-brain barrier and cause vascular inflammation in the brain.”  This would explain many symptoms presumably, like brain fog.

Mother Jones investigative report

This January 2022 outstanding report is titled “Desperate Patients Are Shelling Out Thousands for a Long Covid Cure. Is It for Real?”  Here are some key excerpts:

It first describes the ordeal of a long COVID sufferer named Owen.

“When Owen came down with Covid-19 in April 2021, he felt lucky to get away with a mild case.  After a few days of a runny nose, he returned to his regular routine, including long sessions at the gym.  But three weeks later, Owen, who was 25 at the time …began to have trouble breathing.  It got so bad one day that he collapsed in his kitchen.  Later, at the emergency room, doctors searched for a cause but could find none, so they sent him home.”

“In the weeks that followed, he was so exhausted that he couldn’t get out of bed.  He tried to work, but his thinking was fuzzy.  His appetite was low, and he had trouble digesting even the smallest snacks.  Doctors ran heart tests, ultrasounds, and blood counts that turned up nothing.  Owen visited several clinics for long-haul Covid patients.  He got vaccinated.  He went through cognitive behavioral therapy, a psychological approach to managing symptoms.  A doctor prescribed him a low dose of an anti-addiction medication that had shown some promise in addressing the brain fog.  None of it helped.  Over the next few months, Owen lost nearly 80 pounds.  Desperate, he scoured the internet for answers.”

Eventually, Owen after a lot of web searching, found that “A former Stanford virologist named Dr. Bruce Patterson had developed a special blood test to diagnose long Covid along with what he promised was a highly effective treatment regimen.  … he found entire social media groups devoted to Patterson and his diagnostic company, IncellDX. ‘I am HUGELY thankful to them, gushed one fan in a Reddit group.  For the first time in this nightmare, doctors are telling me that they have things to try that they think may help me.’”

“Patterson’s pitch was impressive: Owen would send a few vials of blood to IncellDX’s lab, where technicians would look for evidence of elevated levels of cytokines, proteins that are thought to play an important role in the body’s immune response.  The higher the patient’s level of certain cytokines, they suggested, the worse the case of long Covid.  Based on those results, Patterson’s team of doctors would assign Owen a ‘long-hauler score’ that indicated the severity of his disease. Owen would follow up with an IncellDX doctor to discuss the results and treatment.  If Owen’s doctor wouldn’t prescribe the drugs—which was likely, since many of them weren’t approved to treat Covid—Patterson’s team would connect him with a special network of doctors who would.”

“Owen had some reservations.  He knew that the process could be pricey and that his insurance probably wouldn’t cover all of it.  But he was desperate. ‘I was pretty suicidal,’ he recalls. ‘I was just so done with all of this.’ So, after paying a few hundred dollars for the test, he sent off his vials of blood to IncellDX and waited for the results.”

The Owen story seems typical of many long COVID sufferers.

Also noted in this report is that there are “dozens of long-haul Covid online support groups” where “hundreds of thousands of members congregate to offer encouragement and commiserate over a dizzying list of ghastly symptoms.  Some haven’t been able to get out of bed for a year or more.  Others find digesting food so difficult that they have to use a feeding tube to stay alive.  Many have had to stop working because they can no longer think clearly.  Then there are the reports of people who have been so tormented by their experiences that they have died by suicide.”

The great difficulty in treating long COVID is emphasized.  “Even at new long-Covid clinics at major medical centers, physicians admit that their approach involves treating individual problems—inhalers for breathing difficulty, for example, sleep aids for insomnia, or cognitive behavioral therapy for brain fog.  Dr. Benjamin Abramoff, a physician who specializes in rehabilitation and directs the Post-Covid Assessment and Recovery Clinic at Penn Medicine, says the spectrum of symptoms he sees is ‘very, very broad.’  As for treatments, so far, he says, ‘There’s no one size fits all.’”  Wise words.

“Patterson’s approach is different.  He claims that IncellDX’s test and treatment protocols do not focus on simply relieving discomfort, but instead, the IncellDX Covid Long Haulers website says, go directly to ‘the underlying immunologic causes of long-haul Covid,’ which Patterson believes is an overactivation of several cytokines, small proteins that play an important role in activating the immune system.”

“Patterson offers a treatment protocol that he describes as being specifically tailored to a patient’s test results—often a combination of off-label medications including blood pressure medications, steroids, an HIV medication called maraviroc, and the controversial antiparasitic drug ivermectin [though that has been replaced with low dose steroids].  Recently, Patterson’s team has also begun offering their protocol to people who believe they are suffering from long-term effects of the Covid vaccines.  …[Patterson said] We found a very similar pathology in postvaccination long haulers as we found in Covid long haulers, even though they’ve never experienced the actual virus.”  [But they have been injected with spike proteins.]

“All of this isn’t cheap. The test costs about $360, and several follow-up consults with IncellDX physicians cost $199 each.  Some of the prescribing doctors in IncellDX’s network charge a fee of a few hundred dollars, and some of the medications can cost as much as a few thousand dollars a month.  Because the IncellDX team says patients often must continue the drugs for eight to 12 weeks before symptoms improve, the costs can be considerable and, again, unlikely to be covered by insurance since IncellDX’s approach is considered experimental.”

“Yet for the nearly 14,000 long-Covid patients who have signed up for the IncellDX protocol, that’s a small price to pay for the possibility of relief. “

“Some patients have even declared that the team’s treatment has cured them. One long hauler from Pittsburgh told a local newspaper that before going through the IncellDX program, she had debilitating fatigue, headaches, and tremors.  Since starting treatment, ‘The best thing is I can actually be part of my kids’ days,’ she said.  ‘Instead of lying on the sofa watching them play, I actually got to play with them and feel like I was a mom again.’”

“Dr. Patterson says that the protocol has worked for 85 percent of their patients.  While the team has published a few small studies supporting their theory, so far, it has not conducted a randomized controlled trial, the gold standard in study design. “

“This treat-first-test-later method is not the only irregular thing about IncellDX’s long-Covid work. A Mother Jones investigation uncovered unusual behavior by the team, including offering medical advice and recruiting patients on YouTube and social media, failing to disclose financial conflicts of interest, and reports of inconsistencies in lab results—all in service of a program that often costs thousands of dollars.  Taken together, these practices have raised the suspicions of some scientists and patient advocates who worry IncellDX may be using unproven tests and treatments to take advantage of the desperation of 14,000 long Covid patients.  As Stanford bioethicist Hank Greely [said], ‘The red flags are in full force on this one.’”

“And long-Covid sufferers are especially vulnerable because so little is known about their condition, says Diana Berrent, founder of the long-Covid support group Survivor Corps.  She has seen many of the 180,000 members of her Facebook group spend thousands of dollars on IncellDX treatments, with, she says, no real results.”

To these criticisms, Patterson counters that his approach is light years beyond what other doctors are doing.

Back to the Owen story.

“In August 2021, a few days after Owen had sent his blood samples to IncellDX, his results arrived in an email.  The test found high levels of several cytokine markers, which the IncellDX team said indicated that Owen did indeed have long Covid and could benefit from the company’s treatment protocol.  During Owen’s consultation, a staffer put him in touch with a telemedicine doctor who would prescribe a steroid, a statin, ivermectin, and the HIV medication maraviroc.  The process of actually acquiring the drugs, Owen recalls, was ‘a nightmare.’  He had to order some of the medications from China, and he paid $2,000 out of pocket for the maraviroc.  But his fatigue, brain fog, and digestion problems were getting worse, so he began the treatment, crossing his fingers this investment would result in relief.  To avoid getting discouraged, he began compulsively checking the internet for any new morsels of positive signs about the protocol.  The doctors, he learned, had quite a tight group of followers on social media and YouTube; it struck Owen as being a ‘weird, cultish environment.’”

Mother Jones goes on: “Patterson’s public behavior can appear to be unorthodox for a physician. …On Twitter, he has offered to diagnose people with long Covid using his unapproved test.  He also has made unfounded claims in interviews and on social media that the drugs he endorses can treat symptoms such as brain fog, neuropathy, and tinnitus.  That’s a problem, says Stanford’s Hank Greely, because IncellDX’s approach is ‘both unproven as a diagnostic and unproven as a treatment for this particular disease.’  Still, Patterson, a highly-credentialed, genial-looking middle-aged white man, comes off as trustworthy and credible.  He often appears in IncellDX videos wearing a white coat and peppers his comments with arcane explanations of the immune system, all of which confers an air of scientific gravitas.”

The missing micro blood clot issue

For some time, I have been spreading information about micro blood clots found in COVID infection, long COVID and COVID vaccine victims.  Spike proteins within small blood vessels nucleate the clots which can become mobile.  Research on long COVID found micro blood clots.  In none of Patterson’s considerable writings is there any mention of micro blood clots, nor has he invoked them as explaining the vascular inflammation his treatment protocol addresses.

In a private email Patterson acknowledged his awareness of the micro blood clot findings.  What deserves some consideration is that micro blood clots throughout the body that can be determined with a D-dimer test could contribute to maladies by restricting oxygen flow to organs and the brain.  And if clots reach critical sites, they could negatively impact organ or brain functioning.  And of course, the vascular inflammation that Patterson addresses could be related to the micro clots that are ignored by his treatment.  Nor does it appear that Patterson uses the D-dimer blood test to evaluate his patients.

When I asked physicians how they were treating long COVID frequent responses were the use of blood thinners and anticoagulants: Plavix, Eliquis and aspirin.

Recent reported research has found that brain fog in long COVID victims was related to inflammation,  This was reported: “It’s consistent with the observation that there’s a fair bit of vascular injury and repair taking place,  In our COVID pathology research, we found there is disruption of small blood vessels in the brain: they leak a lot of protein into the brain and that sets up the inflammation.”  This is consistent with micro blood clots reaching the brain and causing damage,

Conclusions

Objective views of the Patterson “solution” should consider the complete absence of detailed data on the performance of his regime for the thousands of patients he has treated.  Exactly what ailments have been treated and actually cleared by the use of the prescribed medicines?  Have the “cures” been permanent?  Have patients reported ill impacts from using the protocol?  What symptoms have been fully resolved?

Sometimes it is necessary to consider whether something is really not as good, safe and effective as its marketing proclaims, especially for a medical cure.  If something seems too good to be true, it just might be false.  It comes down to trust.  Long COVID victims need to find medical help they can trust.

Dr. Joel S. Hirschhorn, author of Pandemic Blunder and many articles and podcasts on the pandemic, worked on health issues for decades, and his Pandemic Blunder Newsletter is on Substack. As a full professor at the University of Wisconsin, Madison, he directed a medical research program between the colleges of engineering and medicine.  As a senior official at the Congressional Office of Technology Assessment and the National Governors Association, he directed major studies on health-related subjects; he testified at over 50 US Senate and House hearings and authored hundreds of articles and op-ed articles in major newspapers.  He has served as an executive volunteer at a major hospital for more than 10 years.  He is a member of the Association of American Physicians and Surgeons, and America’s Frontline Doctors.