Mast Cell Disease and Eosinophilic Disease May be Interconnected

I have EC and am in contact with many other people who do also. We tend to be very sick and stay quite sick for a long period of time, I have never heard of anyone "getting better". Oral Allergy Syndrome is a common underlying cause or trigger, which is when environmental allergies (usually to tree pollen such as birch or alder) cause cells in the GI tract to react leading to GI tract symptoms. This is very hard to figure out on your own. OAS usually causes intense itching and scratchy feeling in your mouth and throat and can feel like anaphylaxis. If you develop an Eosinophilic GI Disease such as EC, exposure to the allergen in the environment can cause you to have GI symptoms such as pain, burning sensation, cramping, and diarrhea. However, many people never figure out if they have allergen triggers or what they are. People with EC commonly also have excess numbers of eosinophils in other parts of the GI tract too. Treatment doesn't tent to help much and we often end up only able to consume 10 or fewer different foods. It's not uncommon for us to not tolerate any foods at all, or only one or two which can't provide enough nutrition or calories, so we end up consuming a medical food replacement called "elemental formula". In severe cases like mine, people end up TPN-dependent. This is when all of a person's nutrition and calories are given intravenously through a central line, which is a semi-permanent IV line placed in your arm or chest, in order to completely bypass the GI tract. Feeding tubes don't generally help people with EC because they don't bypass the colon. Most people on TPN due to EC do not eat at all. It is invasive and considered high risk, but people can do well and live for decades this way. You get used to it. Honestly the relief from the symptoms means it's actually a big improvement in quality of life, even with the complications.

Strong association of mast cells with eosinophilic esophagitis-specific signatures
“Several studies have consistently found increased intraepithelial MCs in EoE biopsies, and positive correlations with some disease markers have also been reported. Our analyses reveal a broad and striking relationship between MCs and most EoE transcriptional signatures, including inflammation, eosinophil recruitment, epithelial remodeling, and fibrosis. Although these findings are strictly correlative, they significantly add to the body of evidence for MC involvement in EoE pathogenesis and suggest these cells may be a key disease driver. Given the limited clinical effect of eosinophil-directed therapies in EoE to date, our data support exploring the clinical benefit of anti-MC agents in EoE.”

Expression of CD25, mast cell markers and T-cell markers in eosinophilic esophagitis
“mast cells were highlighted by CKIT and tryptase in EOE, and not seen in other clinically mimicking cases. There were also significantly higher densities of CD25 and pan-T-cell marker staining in EOE cases. These findings suggest an inflammatory cellular milieu in EOE, beyond just eosinophils, that can be demonstrated by immunohistochemistry” 

“Abonia et al. described the presence of a mast-cell-associated transcriptome in EOE, corroborated by a subsequent study that found strong correlation between mast cell-specific protease carboxypeptidase A3 (CPA3) and transcripts of genes involved in fibrosis and epithelial remodeling.”

Cardiac Manifestations of MCAS, with an Emphasis on POTS/Dysautonomia, Long COVID, and COVID Vaccine Injury

Cardiac Manifestations of MCAS with Dr. Andrew Maxwell
(interviewed by Tanya Dempsey, transcript here.  Dr. Maxwell is a board-certified pediatric cardiologist and pediatrician. He received his medical degree from Johns Hopkins Medical School and a residency in pediatrics at the University of California at San Francisco, followed by clinical and research fellowships in pediatric cardiology at Lucille Salter Packard in Stanford Hospitals and Children's Hospital of Philadelphia)

"Dr. Maxwell walks us through his thinking and how MCAS is linked to POTS and Long COVID. This episode is a must-listen for patients and practitioners alike."  He says this connection is more important than ever because " in the age of COVID where we're seeing more POTS, Kounis syndrome, myocarditis and even inappropriate sinus tachycardia, which I see a lot of, which is probably a localized version of myocarditis."

Mast cells can cause dysautonomia and POTS, and this is often connected with Ehlers-Danlos Syndrome (EDS).  He says the major issue underlying MCAS is an environmental exposure which can be a pathogen (like a virus) or a toxic substance.  In the case of Long COVID and COVID vaccine injury, he says it's probably the spike protein that is the toxic element activating mast cells because that's what the virus and the vaccine have in common.  He says that "mast cells are doing a lot of the things that we are seeing in these patients causing post COVID long haul syndrome leading to POTS with or without the post COVID long haul. I mean, it could be very specifically POTS, it could be very specifically Kounis syndrome. It could be very specifically myocarditis, could be very specifically inappropriate sinus tachycardia. But I believe mast cells are very frequently the underlying mediator of that inflammation. Now, it could be where it’s partly a mediator and something more direct or some other thing as being a mediator as well. But I see time and time again a pretty good response to full mast cell suppression. So that, that again informs us that very commonly it’s mast cells doing the mediation."

"Kounis syndrome is basically an allergic spasm of the coronary arteries. And so when you have a spasm of the coronary arteries, you have essentially all the signs and symptoms of the angina that might lead one to believe they’re having problems with coronary perfusion. And you are. But it is reversible with, with mast cell medications."  He says he doesn't think his colleagues are making the connection that this chest pain is related to mast cell activation and therefore can be treated with mast cell meds effectively.  He also believes that Kounis Syndrome is much more common than previously thought, so it's important to get the word out and inform more doctors about it.

He says he identifies MCAS patients by taking a close look at their clinical picture, really looking at their symptoms across body systems, and taking a thorough medical history.  This shows if a viral infection seems to have been the trigger.  He points out that some patients have never had a positive test for COVID but were known to have been exposed and developed "long haul" symptoms following the exposure at the right time, so they were just asymptomatic.  "What I kind of look, try to look for is the food sensitivities, the GI distresses that are a little bit different with mast cell activation. And then the one particular feature, what I call rushes of flushes, which is sure there’s tachycardia and palpitations, burst of racing heart palpitations, but you can find that in both the straightforward dysautonomia and mast cell activation. So how do you tell the difference between the two? You get the flushing and the rashiness with rushes of flushes. And that’s kind of how I say, okay, this is definitely a mast cell phenomenon going on."

In diagnosing and treating mast cell disease, he doesn't rely much on lab testing.  He feels it doesn't add much to his understanding of the patient or how he will treat them, which is driven by their symptom presentation "we might start with that type of therapy including fludrocortisone, midodrine, corlanor, beta blockers, pyridostigmine, that type of medication directed toward dysautonomia slash POTS."  After that, he will employ what he calls his "bicycle tire management strategy" which means:

"What I mean by the bicycle tire management strategy is you gotta consider mast cell activation like a bicycle tire with about seven holes in it. And those holes are you know, excessive histamine consumption in the diet. The GI tract as being a source of additional mast cell activation, so having the GI tract in order, and then mast cell action itself, both systemically and within the GI tract. And then those particular receptors of histamine, H1 and H2. So therapy would be an H1 blocker, an H2 blocker, mast cell suppression systemically with usually a lukast. Zafirlukast is what I prefer. I usually avoid montelukast and with a cromolyn substance in the gut. So Gastrocrom here in the US. Finally, quercetin is a natural version of the systemic mast cell stabilizer. So I usually have patients on quercetin. I consider it kind of a freebie that not really being exposed to a med is very safe, so why not? And then making sure the GI motility is working well, making sure that there’s no evidence of what we call SIBO, small intestinal bacterial overgrowth, doesn’t necessarily mean I work them up for that in any way. I just mean I put ’em on probiotics. Make sure if they have any evidence of slow GI motility, put ’em on a burra, gass or ginger root extract (not sure what "burra" or "gass" refer to). Rarely have to go something more extensive medication-wise with that. And then of course, put them on a low histamine diet, make sure they’re not adding histamine to their system. That’s usually the, the, in my view, patching all seven holes of that bicycle tire. And when you have all seven holes patched, You can expect a change."

When asked why he prefers Zafirlukast over Monteleukast, he says it is primarily because he sees Monteleukast cause a lot of depression in his patients.  He attributes this to mast cells releasing elastases, that breakdown the blood-brain-barrier (and also the gut barrier and the endothelial layer in capillaries) by breaking down small proteins called cadherins that hold these things together, making them "leaky".  He says he sees similar results with a lot of the dopamine agonist antagonists like Reglan.  He speculates that this scenario may be more common in children.  Dr Dempsey points out that she sees better responses to Monteleukast (and other meds) when they are compounded, so the excipients used in the standard formulations may be the problem.  

(This is his complete quote from above, included because it may be of particular interest to some readers "Mast cells not only secrete histamine, but they secrete elastases and elastases breakdown the little proteins that hold things together, what are called cadherins and maybe other proteins too. But I really focus on the cadherins. Cadherins hold together, the GI epithelium, that’s the E-cadherin. So that’s where your leaky gut comes from and it holds together what are called VE-cadherins hold together, the capillaries, the endothelium within capillaries. And so if they break down, you get increased leaky capillary in general, but blood-brain barrier. And we see that with not only montelukast, we see it with a lot of the dopamine agonist antagonists like Reglan where patients will much more commonly have extra pyraminal effects being put on Reglan and other types of dopamine modifying agents.")

They go on to discuss the idea of grouping together conditions like MCAS, POTS, and other commonly comorbid conditions because it's clear that these conditions frequently occur together.  At first, doctors referred to "the triad" which included MCAS, EDS, and dysautonomia.  It then expanded to "the pentad" when GI dysmotility (GI involvement in general) and autoimmunity were added.  The direction of causality is unclear- which condition came first?  Did the leaky gut become an "auto-antibody generator over time"?  Did the autoimmunity start this whole progression?  The idea of identifying the 5 main pieces is that a patient would then need to set up a team of 5 doctors to manage these conditions, although in reality that is often not possible to do.  Then the next two conditions were added, bringing it to "the septad"- many patients had underlying infections, such as Lyme Disease, and they also had what is often called "ME/CFS" which is now generally recognized to be mitochondrial dysfunction.  Dr Dempsey than added 3 more things to bring it up to a "decad" including small fiber neuropathy, cervical instability and tethered cord, and autoimmune encephalopathy (such as PANDAS/PANS).  This last component acknowledges the brain fog and cognitive issues, the neuropsychiatric issues, and endocrine issues especially thyroid, adrenal, and sex hormone issues.  Dr Maxwell adds that he sees many of these additional pathologies that are being added to the list as sub-forms of things already on the list, so it may not make much difference how much you expand the list or keep it short in terms of making sure that you recognize and treat the patient's whole picture.  

It's worth noting that in the above discussion, Dr Maxwell puts forth the idea that there can be localized expressions of some of these conditions that may not meet full criteria, that were caused by a localized environmental exposure.  For example, a person who was exposed to "something that’s aerosolized and breathed in, and what happens is you have a localized nasal pharyngeal mast cell activation that then causes havoc in the nasal pharyngeal region, specifically CCI, TMJ issues, and then loss of airway. So the airway becomes floppy for different reasons. And so you see these particular patients and they’re kind of a setup for this phenomenon I see and call "spiky leaky syndrome." (CCI is cranial cervical instability, meaning the vertebrae in the neck are unstable).

Dr Maxwell is then asked if how he sees the patient picture changes how he treats the mast cells and he says generally, no, that he pretty much starts everyone on his usual mast cell protocol.  If a patient seems to need more than that, he says "another strategy I have are IV infusions of mast cell meds... getting saline along with Benadryl, Toradol, Ativan, and famotidine and IV form, and oftentimes on ondansetron as well. And so that often works much more effectively than the oral forms."  He may also increase the dose of LDN (Low Dose Naltrexone).  He also adds that if a patient is really "POTSie" and has "angina type symptoms and you’re thinking the mast cell meds aren’t gonna work fast enough for that, you might try some antianginal type strategy, something like a nitric oxide releaser to open up their coronaries as quick as possible."  

They then go on to discuss how mast cells are related to and can cause Dysautonomia and POTS, and specifically how the COVID virus and the COVID vaccines have both been shown in research to contribute to the onset of both Dysautonomia and POTS specifically.  This discussion begins at [00:26:26] in the interview- if this is very interesting to you, I suggest going to the interview and reading the entire very long quote.  This is my summary of what Dr Maxwell is saying:

POTS is basically what happens when the person's venous system becomes "saggy" and "stretchy" rather than as rigid as it needs to be to appropriately control blood flow throughout the body as the body moves around and changes position.  When the person stands up, the venous system is too "saggy" to bring the full amount of blood up to the heart to fill it when ti pumps so it pumps partially empty, resulting in low cardiac output.  This causes the heart to beat faster, as tachycardia, in an attempt to increase cardiac output.  One of the reasons that MCAS more broadly and COVID or COVID vaccine injury more specifically can cause this situation is that the spike protein activates mast cells, which then release mediators that break down the connective tissue of the venous system itself, causing it to become too "saggy" to function properly. 

He says there are also several ways that mast cell activity can affect the functioning of the autonomic nervous system directly, which is the branch of the nervous system that regulates things like circulation, heart rate, and blood pressure.  "(M)ast cells activated in the gut can then cause inflammation of the sensory portion of the Vagus nerve. It’s the information heading back to the brain. And so if it’s irritating and inflaming the sensory portion of the Vagus nerve, it’s as I consider it like almost like a CPU u you know, computer system with information going into the CPU, if it’s garbage in, it’s gonna be garbage back out. And so, it affects how the motor portion of the Vagus nerve works. And so you have a dysautonomia of the motor portion of the Vagus nerve that results from a inflammation of the sensory portion of the Vagus."

He outlines another way that mast cell activation can lead directly to dysfunction of the Vagus nerve as well as several other cranial nerves, which could also be leading to POTS and Dysautonomia in patients following a COVID infection or vaccine injury.  Mast cells in the neck becoming activated could be releasing the mediators mentioned above that can "tenderize" connective tissues, in this case ligaments in the neck that hold the cervical vertebrae in place.  This could in theory result in a situation very similar to what is called CCI (Cranial Cervical Instability) and is often seen in EDS patients (Ehlers-Danlos Syndrome, which is often comorbid with MCAS). He sees this as essentially "carpal tunnel syndrome" of the neck but says that because it acquired by mast cell activation, it is more of a clinical diagnosis and may not show up on the radiology and other types of testing used to identify CCI in EDS patients, that is more structural.  In this scenario, the C1 vertebra (aka the atlas) becomes loose and unstable, and gets pushed forward, which compresses the cranial nerves 9, 10 (the Vagus nerve), and 11 that are exiting the spine at that spot.  Those nerves are then compressed against the jugular vein, which is then compressed against the stylo hyoid ligament.  If this situation becomes chronic, these nerves can become damaged, which can then lead to dysfunction of the parasympathetic nervous system by way of a little bit of CCI.  

More evidence that this happening is that you’re also seeing cranial nerve 9 and cranial nerve 11 dysfunction, which can present as tinnitus, phonophobia (sensitivity to and/or fear of certain sounds) and hyperacusis (an abnormally strong reaction to sound, occurring within the auditory pathways), vertigo, and what’s called globus feeling of a mass in the back of the throat.  Dr Maxwell says he also sometimes sees "what’s called eagle syndrome type symptoms with turning the head and having pain upon turning your head. From side to side, sharp stabbing pains in the neck or pain at the base of the tongue. Those are all glossopharyngeal nerve findings. And then the cranial nerve 11 is a motor nerve to the trapezius and it innervates the trapezius. So when it’s injured, oftentimes will cause a knottiness something beyond coat hanger pain in the trapezius, but rather a knottiness in the trapezius. So when you hear these patients complaining of all these symptoms, that it sounds almost crazy that they’re related. No, there’s one place in the body where these three nerves are together and they happen to run right in front of the lateral process of c1. So when that slips forward and chronically does so, I think it causes this, this list of symptoms together."

When Dr Maxwell is asked how he manages and treats this situation with the slipped C1 vertebra if he suspects it, he responds "I will get the physical therapist involved. And I’ll often assess their airway as well, because if they have that going on, they may have a floppy airway as well, and they may be losing it at night and showing what we call upper airway resistance syndrome, which is a subtle form of sleep apnea. So we oftentimes, I get sleep studies to look at that. Oftentimes I’ll get ENT and the oral airway doctors including oral surgeons involved to make sure that they’re not losing their airway, myofunctional therapists to help strengthen the musculature of the airway. And then there’s a class of physical therapists that are geared entirely toward CCI. So I will get them and get them involved. One of the things that I’ve found useful as a test of concept in these patients is what happens if they were to get some what’s called NUCCA therapy, NUCCA. And that’s a particular form of chiropractic therapy that focuses on the Atlas. And so these NUCCA chiropractors have been very, very helpful in putting C1 back in place. And these patients can respond right away to their POTS like symptoms. Their dysautonomia improves right away."  He says this is a test of concept because while the NUCCA therapy is very effective, the improvements don't last long. He discusses prolotherapy as an option and says that he encourages the therapist to inject platelet-rich plasma (from the patient in order to avoid MCAS being triggered by something foreign).  

He sees this therapy, like he does the POTS therapies, as "band-aid" therapies to help as the longer-term stabilization of the mast cells and treatment of any residual COVID is taking effect.  This may include the body clearing residual spike protein, treating a lingering COVID infection, or treating another infection that was latent and reactivated from the immune suppression of the COVID or vaccine (such as HHV6, EBV, or Lyme).  He says he will treat with anti-virals if "the PCRs are positive or if the IGMs for those viruses are positive".  

They discuss this paper Apparent risks of postural orthostatic tachycardia syndrome diagnoses after COVID-19 vaccination and SARS-Cov-2 Infection, which found a significantly higher risk of developing certain conditions associated with POTS after both COVID infection and COVID vaccines, including Dysautonomia, POTS, and MCAS, as well as some other conditions including UTIs, lower back pain, and symptoms like dizziness, fatigue, and anxiety.  They go on to talk about how complicated it is to weigh the costs and benefits of vaccination for the population of people who already have any of these conditions or who are at higher risk for developing them, especially given that the nature of COVID infection has changed. 

Dr Maxwell's last message for patients "for the patients seeking help, you know, find the right provider that works with you. Don’t let someone dismiss you. I hear again and again being told, you know, there’s no point in managing anything. You’re gonna get better with your long COVID. And you know, we’ve seen long COVID patients two years out who were just struggling, not everybody. And it’s great to see some patients getting better even on their own. But you never know who thoses are gonna be, and so you’re gonna want to try to modify what could be a very long road. And so you know, make sure you’re finding someone who’s addressing your issues that has a a pretty good handle on the underlying causes that can do it in a systematic way. And I think you’ll have some success."

Further information on the topics discussed in this interview:

Mast cells in the autonomic nervous system and potential role in disorders with dysautonomia and neuroinflammation
"Mast cells... having potential involvement in the pathophysiology of dysautonomias and neuroinflammatory disorders. MC are located perivascularly close to nerve endings and sites such as the carotid bodies, heart, hypothalamus, the pineal gland, and the adrenal gland that would allow them not only to regulate but also to be affected by the autonomic nervous system (ANS). MC are stimulated not only by allergens but also many other triggers including some from the ANS that can affect MC release of neurosensitizing, proinflammatory, and vasoactive mediators. Hence, MC may be able to regulate homeostatic functions that seem to be dysfunctional in many conditions, such as postural orthostatic tachycardia syndrome, autism spectrum disorder, myalgic encephalomyelitis/chronic fatigue syndrome, and Long-COVID syndrome."

Phonophobia and Hyperacusis: Practical Points from a Case Report

NUCCA

Prolotherapy

POTS association with COVID-19 vaccination and COVID-19 infection
"Although any comparison of post-exposure rates should be interpreted cautiously, given the baseline differences in POTS incidence in the two mutually exclusive populations, these results indicate that POTS might be occurring at a higher-than-expected frequency following COVID-19 vaccination, although at an overall rate lower than the frequency of POTS occurring following SARS-CoV-2 infection."

Apparent risks of postural orthostatic tachycardia syndrome diagnoses after COVID-19 vaccination and SARS-Cov-2 Infection
 "POTS-related diagnoses appear to be acquired with increased frequency after, compared to before, COVID-19 vaccination, particularly when compared to more commonly diagnosed conditions"

"For new diagnoses made after vaccination, we found that the five conditions with the highest post-vaccination odds of new diagnoses were myocarditis, dysautonomia, POTS, mast cell activation syndrome and urinary tract infection (UTI). Two POTS-associated conditions had lower odds, with fatigue demonstrating a moderate ratio and Ehlers–Danlos syndrome (EDS) having the second from the lowest ratio."

"There is biological plausibility for the association between POTS and COVID-19 vaccination in particular. Before the pandemic, mRNA vaccination had been administered in small trials predominantly involving cancer therapy, demonstrating rare off-target neurological effects such as Bell’s palsy, which has also been seen with COVID-19 vaccination^25,26. In SARS-CoV-2 infection, multiple reports of post-infection POTS invoke the possibility of an immune-mediated mechanism triggered by an antigenic component of the spike protein shared with vaccination^13,24,27. Given the broad expression of ACE2 preceptors, inflammasome activation by synthetic spike protein could result in multi-systemic effects, including neurocardiogenic targets and potential induction of variable types of autoimmunity^28,29,30. Additionally, the lipid nanoparticle coating in mRNA vaccine formulations is known to be highly inflammatory, although effects related to the lipid coating appear less likely contributors than spike-protein-mediated effects³¹. Further research is needed to clarify potential mechanisms related to either vaccine formulation or vaccine target."

Postural orthostatic tachycardia syndrome after COVID-19 vaccination
"Ten patients (3.9%) at a quaternary-care POTS clinic reported new or worse POTS symptoms after the mRNA COVID-19 vaccine. All patients had pre-existing comorbidities, suggesting a potential group of patients to monitor for post-vaccine POTS. Symptoms responded to guideline-directed POTS therapy."  (Pre-existing conditions included previous COVID-19 infection, Hypermobile EDS, MCAS, and auto-immune cardiac, neurological, and gastrointestinal symptoms)

The UHC Situation

 

In Econ 101 in college, insurance is LITERALLY the textbook example of what economists call "market failure" (utilities are another example). Market failure refers to the fact that certain industries have unusual characteristics that make a competitive market impossible and they have to have government intervention on various levels. Our reality is exactly what the theory says would happen if you tried to run the insurance market with private companies competing. What this means is that our system isn't this way because of mistakes, or unforeseen problems, or because it's "broken". It's operating EXACTLY as it was set up and intended to run. They've always known it would be exactly as it is now.

You are witnessing the relief and gratitude of a population at seeing a predator, who has been terrorizing and killing them for fun and profit, brought down so that he can't harm any more of them. Brian Thompson was PERSONALLY responsible (he is the one who brought in the AI to deny claims with an error rate of 90%) for more death and torturous suffering of innocent people then all American serial killers and mass killers combined. Ossama Bin Laden had a family too. Ted Bundy was a great older brother. He forfeited his claim to "humanity" when he not only refused to stop killing us, he increased his killing. And stop shaming the public- the investors (who he defrauded billions of dollars from) went ahead and held their meeting anyway. They don't care about him any more than we do. Corporate media is spinning this story hard. The political and legal system in America has been taken over by the predator class, of who Brian Thompson was just one of them, so that those avenues are now closed for the rest of us as avenues to try to change the healthcare system. Our elected officials have almost unanimously sold us out and actively kept reforms from being undertaken.  They have eliminated every peaceful, lawful means we have of protecting ourselves from their insatiable and entitled greed. 

The corporate media is intentionally misrepresenting what the public is expressing to try to shame us for seeing the value of his life the same as he saw the value of our lives.  The corporate media is basically telling us to go back to shooting schoolchildren, or strangers at Walmart, and don’t even think about killing another person whose life actually MATTERED EVER AGAIN. Piers Morgan and MSNBC and FOX News and the rest of the corporate media- you have spent more than a year now justifying the rampant slaughter of children with sniper rounds en masse, the bombing and burning and utter destruction of hospitals with patients inside of them including preterm infants, the genocide of tens of thousands of civilians, so don't dare to lecture us about not being horrified by murder.  You are owned by the predator class and you think that if you do their bidding, that you are a member of their club.  You are just as expendable to them as we are.  They won’t hesitate to do to you what you are doing your best to convince us they aren’t actually doing to us.

Inside STAT's investigations of UnitedHealth Group

What United Healthcare Doesn’t Want You To Know
UnitedHealthcare began in 1977 with a new at the time model for providing healthcare- HMOs.  In 1973, the Health Maintenance Organization Act required employers to offer their employees an HMO option and provided federal grants ($375 million).  HMOs became highly profitable, but they completely failed in their ostensible mission to stop the escalating cost of health care in the US, which has obviously ballooned out of control since this time.  UnitedHealthcare was hired to run an HMO that was itself a non-profit, but the doctors in the HMO threatened to unionize because they were barely able to get by with what UHC was paying them.  It turns out that the same man who ran the non-profit hired his own for-profit company to run the non-profit creating a clear conflict of interest.  The man's name was Richard Burke.

UHC was built by acquiring federally-subsidized insurance HMOs, and it turns out that one of the people behind the 1973 HMO Act that created these subsidized insurers was Richard Burke.  Consolidation in the 90s reduced competition and prices for health insurance dramatically increased, as always happens with consolidation.  A major part of this consolidation was for-profit companies like UHC and Anthem buying up non-profits.  While markers of quality didn't improve and costs went up, another thing went up- denials of claims.  What used to be rare became so common that in 2021 nearly 50 million claims were denied.  

The denials are not just hurting patients, 41% of doctors now are taking out payday loans because of how hard it is for them to get paid.  BUT- of course- UHC also owns a payday lender to take advantage of this market that they created called OPTUM.  This isn't enough though- UHC (along with several other asset managers) are also buying up these distressed doctors practices at very low prices, furthering the consolidation.  UHC now employs over 70,000 doctors in America and is the largest employer.  UHC uses subsidiaries to appear as "outside influences" to reduce the rate that they are required to repay doctors or how to handle claims.  All of this is illegal and violated anti-trust laws.  UHC was allowed to acquire Change Healthcare, a company that gave them direct access to the information about what their competitors were paying for the same services and other proprietary information which they used to further undermine the market. 

How UnitedHealth’s Playbook for Limiting Mental Health Coverage Puts Countless Americans’ Treatment at Risk
"Around 2016, government officials began to pry open United’s black box. They found that the nation’s largest health insurance conglomerate had been using algorithms to identify providers it determined were giving too much therapy and patients it believed were receiving too much; then, the company scrutinized their cases and cut off reimbursements.

By the end of 2021, United’s algorithm program had been deemed illegal in three states.

But that has not stopped the company from continuing to police mental health care with arbitrary thresholds and cost-driven targets, ProPublica found, after reviewing what is effectively the company’s internal playbook for limiting and cutting therapy expenses. The insurer’s strategies are still very much alive, putting countless patients at risk of losing mental health care."

Insurers Continue to Rely on Doctors Whose Judgments Have Been Criticized by Courts
"United’s approach, the judge said, essentially boiled down to “We’ll just gamble with her life.”

"The cases, ProPublica found, expose in blunt terms how insurance companies can put their clients’ health in jeopardy, in ways that some judges have ruled “arbitrary and capricious.” To do so, court records reveal, the insurers have turned to a coterie of psychiatrists and have continued relying on them even after one or more of their decisions have been criticized or overturned in court.

In their rulings, judges have found that insurers, in part through their psychiatrists, have acted in ways that are “puzzling,” “disingenuous” and even “dishonest.” The companies have engaged in “selective readings” of the medical evidence, “shut their eyes” to medical opinions that opposed their conclusions and made “baseless arguments” in court. Doctors reviewing the same cases have even repeated nearly identical language in denial letters, casting “significant doubt” on whether they’re independent."

An important detail that is mentioned in this article is that doctors aren't considered to be practicing medicine when they work for insurance companies reviewing cases and making recommendations, so they can't be sued for malpractice or on medical grounds, so they can't be held accountable. "Insurers have tried to defend against lawsuits by pointing out that multiple doctors all reached the decision to deny coverage. But judges have criticized doctors for rubber-stamping denials and for “multiple levels of deficient arbitrary and capricious determinations.” Just last year, a judge wrote that “three deficient denials considered together does not amount to substantial evidence to save any one of them.”  

When families sue the insurance companies and their cases are sound, they often settle out of court with confidentiality clauses because they don't want to risk losing in court and getting nothing. The Employee Retirement Income Security Act governs a lot of insurance claims in court and doesn't allow for punitive damages, which means there's no real penalty or disincentive for insurance companies to stop their bad behavior.  One federal judge said “They might have to pay 10 claims,” the judge said, “but if they can avoid paying a thousand claims, then why would they change anything?”  ANother judge, after likening the fraudulent language used by UHC to deny coverage, said "that it sometimes appears the insurer’s only duty is to “preserve the plan’s financial assets rather than offering aid to the plan’s human assets (its members and beneficiaries).”  (Sometimes??  All the time)

Her Mental Health Treatment Was Helping. That’s Why Insurance Cut Off Her Coverage. 
Insurers use both a lack of progress and making progress by a patient as reasons to cut off intensive treatment and cover only a lower, less expensive level.  If the patient hasn't made adequate progress they may claim that the treatment isn't working, isn't appropriate, that the patient is sabotaging the care, or that the problem is chronic and that acute care won't help.  This is done without concern for the length of time needed for the treatment to work or the fact that some conditions, such as bipolar, require life-long care.  Paradoxically, when a patient is making care, they will then claim that the treatment has worked and is no longer needed.  It's a lose-lose scenario for a lot of patients.  In the case that this article focuses on, the woman was denied ongoing care that resulted in her needing far more care at a far higher cost and bringing on so much distress that it derailed her progress a number of times and placed in her serious danger many times.

Judges have found companies using guidelines as the sole basis for coverage, even though this goes against the law and the companies themselves deny it.  They have also found in a number of landmark cases that insurance companies were violating a federal law that requires them to cover mental health and behavioral treatment the same as they cover physical health problems.  Despite these rulings, the companies continue to follow the egregious practices.  One judge wrote “The mere incidence of some improvement does not mean treatment was no longer medically necessary,”

Denied (The following is a script from "Denied" which aired on Dec. 14, 2014. Scott Pelley is the correspondent. Michael Rey and Oriana Zill-de Granados, producers.)
The shooter at Sandy Hook Elementary School had been denied mental health treatment by his insurer, which spurred an investigation into the aggressive and sometimes illegal tactics used by insurance companies to deny mental health coverage- especially serious cases that require long-term or intensive care.  The investigation found that there are many instances in which this care is denied or cut off prematurely on little or no grounds, and that many of these cases end in tragedy that may have been avoidable if they had received the treatment that they needed.

These denials are made by doctors who haven't seen the patient and don't have knowledge of the case outside the case records.  They call and harass doctors, sometimes multiple times a day, lookling for ways to cut off services.  They go against the expert opinion of treating doctors, and in many cases, multiple treating doctors and facilities.  Cases were found in which an insurance company doctor left several messages for a treating doctor, but then denied care after waiting only 22 minutes for a return call.  

One person interviewed said "They're called managed care, but it's really managed cost."  When asked why the insurance company was so aggressive about getting people, even children, out of long-term care and sending them home early, he replied "well, it's a lot cheaper in the short run. And if you're managing costs on a quarterly basis, you can understand why from a business point of view for that quarter it makes sense. For the sake of the child, for the sake of our society, for the sake of the child's future it doesn't make any sense."  In speaking about a notorious doctor known as Dr Jack who earns $25,000 a month doing "reviews" at $45 each, he said "We spoke to 26 psychiatrists from across the country, and every one brought up Dr. Jack's name. Some called him "Dr. Denial."  Some of the insurance company doctors that the writer looked into had denial rates between 92% and 100%.

He wanted to live. After his insurance rejected coverage, he died of a fentanyl overdose
A young man had himself taken to a treatment center that knew how to treat his Fentanyl addiction, but after only 3 days his insurance company refused to pay and he was sent home, where he died soon after from an overdose.  The article finds that "the system for appealing mental health denials effectively remains broken."  They found several commonalities including that the cases that were appealed were often decided by insurance plan doctors who were not trained in the criteria required by law, that many "appear to deny almost every appeal for behavioral health treatment they review", that data regarding denials is not shown to regulators or even kept, and that when regulators do get involved, they routinely side with patients, indicating that the denials were not correct most of the time. 

Deny, Defend, Depose: UnitedHealthcare CEO’s Slaying Highlights Widespread Rage at Healthcare Industry
"there has been an outpouring of rage on social media directed at the health industry, with many sharing stories of having claims for vital care denied and losing precious time with loved ones during illness."  Juan Gonzales, one of the hosts, points out that there are an average of 75 murders each day in America, but this one killing of such a wealthy and powerful person shines a light on how some of our lives are treated as much more valuable than others.  One guest explains that the rage has been boiling just below the surface for many years, pointing out that "A hundred million Americans have medical — have medical debt, but most of those people have health insurance. But they can’t get their insurance companies to cover the care that they need."

"This company in particular (UHC) has a record of using prior authorization or refusing to pay for needed care far more than its competitors. But for-profit insurers, in general, have used this as a means of enriching their shareholders, of using fewer and fewer of our premium dollars to pay for the care that we need, so that more money can be made available to their shareholders."  Brian Thompson ran Medicare Advantage for UHC.  

Healthcare Is a Right: CEO’s Killing Ignites Calls for Reform Amid Trump’s Plan to Privatize Medicare
"Wendell Potter, now an advocate for reform, he says the murder of Thompson “was a horrible crime, but it is important to point out that violent crime is perpetuated by these companies in an anonymous way every single day when an untold number of Americans are told they are not going to get the care they need.” Some doctors have referred to this as a “moral injury” they face on the job. Potter urges lawmakers to seize the opportunity to move forward with far-reaching reforms."  (This is ludicrous, lawmakers have sold us out to these health care companies.  They work for the people who pay them, and that isn't us.  We, The People, cna't begin to pay them what the private sector does.  Reform has been proven to be no option at all.)

They discuss the case of 17-year-old Nataline Sarkisyan, who died when Cigna denied a necessary liver transplant.  The company eventually agreed to cover it, under extreme pressure, but it was too late and Nataline died because of the delay.  

Derrick Crowe, one of the guests, represents Care Over Cost (a campaign to help people get claims denials overturned).  Wendell Potter, the other guest, is a former executive for the health insurance companies Cigna and Humana, executive editor of HEALTH CARE un-covered, author of the book Deadly Spin: An Insurance Company Insider Speaks Out on How Corporate PR Is Killing Health Care and Deceiving Americans and Nation on the Take.

Denied: ProPublica Exposes UnitedHealth Profiteering OffLimiting Care for Children with Autism
Discusses ProPublica article exposing UHC/Optum for “strategically” moving to cut off ABA therapy for kids with autism, especially those on Medicaid.  UHC stands out as especially bad.  Company has “secret, internal cost-cutting strategy” – UHC/Optum calls it “the gold standard treatment”.  They have developed “market plans”, “special action plans” to limit access to care.  They are terminating contracts with existing providers and avoiding contracts with new ones. The Mental Health Parity Act was passed in 2008 that says that mental and behavioral health services must be offered at parity with physical health services.  This may also violate Medicaid laws. 

UHC took an old algorithm that was designed to identify patients at risk for suicide or substance abuse, they redesigned it to look for what they call “therapy overuse” and began aggressively targeting children with autism getting therapy.  The providers were being aggressively questioned about the medical necessity of the therapy.  They were investigated by 3 states and the Department of Labor for these practices, and told it was illegal and that they had to stop doing it in these jurisdictions.  The way our healthcare system is set up, they could continue to do this in other states.  

'Out of Control': Insurance Giant UnitedHealth Calls in Middle of Cancer Surgery to Question Necessity
This article discusses a video made by a doctor who was called out of surgery by UHC to justify the patient's inpatient status for the night following the surgery, to be questioned by someone who claimed not to know the patient's diagnosis or that she was in surgery, because that was a different department.  UHC later claimed that they wouldn't call a doctor out of surgery, but they have no credibility. 

OTHER HEALTHCARE COMPANIES
Debt in the dark: UCHealth sues patients daily and some have no idea why
UC Health, a Colorado company, claims that it's practice of suing patients who it claims "don't want to pay" is the industry norm- but an investigation showed that it is virtually the only health company in CO doing this.  It is suing patients who have already paid off their bills and can prove it, patients who have a zero balance on their account, and others for no reason anyone can figure out.  Two state legislators passed a law to try to stop this practice. 

Medical Needs, Disabillities, and Emergency Management

The Partnership for Inclusive Disaster Strategies

Domestic Preparedness

Wheelchair Charging Stations

Cal OES Governor's Office of Emergency Services Access and Functional Needs

Pierce County Access and Functional Needs Program

Inflammation and Mast Cell Activation Syndrome

Inflammation and mast cell activation syndrome
(My notes for an interview by Dr John Campbell with Dr Tina Peers)

She learned about MCAS because her daughter suffered terribly with eczema and other symptoms that a doctor identified as Histamine Intolerance and MCAS, and treatment made a huge difference for her.  Dr Peers then began recognizing the syndrome in many of her own patients and providing them with answers, many of whom had given up on ever understanding their various chronic health issues.  Her basic level guidance is for patients to take anti-histamines (blocking both H1 and H2 receptors), supplements including vitamin C (for its anti-histamine property), and following a low histamine diet. 

The world leader in mast cell disease research is Dr Molderings at Bonn University.  Mast cell diseases aren't taught in medical school so it's up to patients to tell their doctors about it if they have it.  There are 2 conditions- Histamine Intolerance, which occurs when a patient doesn't produce enough diamine oxidase (an enzyme in our stomachs that reduces the amount of histamine in our food), and MCAS, which is when a person's mast cells release too much histamine too easily.  Most of her MCAS patients are also diamine oxidase deficient (leading to increased absorption of histamine from food) so they get a "double whammy".  In the medical literature, the incidence of Histamine Intolerance is approx 3-5%, but the incidence of MCAS is between 17-20% (According to Dr Molderings). 

She also does genetic testing with her patients to look at their methylation markers and their histamine metabolism- she finds that her MCAS patients rarely have normal diamine oxidase production (the enzyme that breaks down histamine in the gut) and tend to have KIT gene mutations (the genes involved in coding for mast cells).  There are 50 known variations of KIT genes.  Symptoms and syndromes she ties to MCAS include eczema, rosacea, Chronic Fatigue Syndrome (ME/CFS), migraine and other headaches, rash, urticaria, psoriasis, IBS, diarrhea, fibromyalgia, other joint problems, bloating, nausea and vomiting, interstitial cystitis, POTS, and are hypermobile.  She says 80% of MCAS patients are hypermobile (may have EDS) and 80% are female, and 30% have interstitial cystitis. 

Dr Campbell gives a simple overview of mast cells- they are a type of white blood cell that resides in tissue rather than circulating.  They trigger an inflammatory process when we want them to, including heat, pain, redness and swelling, which brings increased blood supply and nutrients to a damaged or infected area to help the healing process.  Mast cells store histamine to release when needed, but they also store another 1,000 cytokines.  They are concentrated in areas where our bodies are in contact with the outside world including our skin, lining the nasal passages, sinus passages, and respiratory system, they line the entire GI tract, they line the urogenital tract; she compares them to bouncers at a club who are just inside the door to stop "undesirables" from coming in.  

In MCAS they become overzealous and pick a fight with all sorts of things, sometimes almost anything, that they come in contact with.  When they react (degranulate), they release one or some or many of these different cytokines (often called mediators) and in various combinations, and they can release 350 chemokines which pass messages to other mast cells to join the reaction (this is how you get systemic reactions aka anaphylaxis).  Mast cells also line our nerves, and histamine is also a neurotransmitter.  Mast cells in the stomach (chromogranin cells) release stomach acid.  Histamine plays essential roles in the body, but we need it to be carefully regulated so that we have only what we need, where we need it, and for how long we need it.  

MCAS patients have excessive histamine lingering, as well as other chemicals that can cause bruising (heparin), elastase 2 causes membranes to break down, clotting factors contributing to clot formation.  There is always inflammation and there may or may not be allergic-type reactions, including anaphylaxis, and dystrophisms which are formations of new tissue (abnormal tissue growth).  Examples include cysts, often in the breast and pancreas (can also include skin tags, scar tissue, and fibroids).  MCAS patients can also have poor wound healing.  The symptoms a person experiences will correspond with where the over-reactive mast cells are concentrated, such as asthma occurring in people with abnormal mast cells in the lungs (in these cases inhalers may not work because the mechanism is different).  For people with concentrations of mast cells in their skin, things as simple as their clothes rubbing on their skin or pressure from waistbands can cause itching and rashes or bruising.

Dr Campbell asks, given the enormous variation in presentation, how do you suspect and diagnose MCAS?  Dr Peer responds that you recognize patterns of inflammatory symptoms, they often have sensitivities including to things touching skin such as tags, as well as a very heightened sense of smell and aversion to bright lights and loud noises.  You also have to consider what other conditions might also produce the pattern of symptoms the patient is presenting with.  Testing for cytokines can help but need to be developed more.  The more the mast cells are triggered, the more sensitive the person can become over time.  Infections can make MCAS worse.  She says there is "consensus 1" criteria, which requires a positive blood test for specific markers and rules out many people, and "consesnsus 2" criteria that don't require the blood test. Instead, consensus 2 says that if the provider has a reasonable suspicion of MCAS that they can try some of the basic treatments and lifestyle changes, including some basic medications, and if the patient improves significantly, it can be inferred that they do have MCAS.  

There is a website called "what the bleep can I eat .com" that has a good list of histamine levels in foods.  It's worth noting that there is a lot of innacurate information online about histamine levels in foods.  The site lists about 200 foods that have no, or very low histamine levels.  Some of the very high histamine foods include tomatoes, bananas, avocados, spinach, gluten, tea and coffee, green tea, alcohol, chocolate (the last 3 also block diamine oxidase production).  Processed foods tend to be high in histamine, as well as leftovers (anything being re-heated or left around for awhile) because bacteria present on foods converts the amino acid histidine to histamine.  You can think of a "histamine bucket" in the sense that it takes a certain amount of exposure to add up to the level that triggers a reaction, so a person may get away with a food one day but not another day.  

A person can take diamine oxidase supplements when eating to help reduce the histamine load (DAO supplements)- as an aside, these often contain ingredients that are problematic for MCAS people so be careful with them.  Pea shoots have a high level of diamine oxidase and eating some of them before a meal can also help.  In the big picture MCAS people do best on a ketogenic or paleo diet, with fewer carbohydrates, because these diets are so anti-inflammatory.  In addition to dietary changes, some supplements help, including vitamin C which has anti-histamine and antibiotic properties, and is anti-inflammatory.  Vitamin D with K2 is also important, as is magnesium, CoQ10, l-carnitine (acetyl), and iodine, things to support the mitochondria.  

MCAS people get mitochondrial dysfunction which then limits energy production.  Our cells have thousands of mitochondria in each one- our mitochondria produce 70-80kg of ATP every day (this is because as soon as we make it, it's gone, so it's made at a high frequency). Our mitochondria are 32% of our body weight.  Our heart has the highest density of them, and then the liver.  The post-exertional malaise, the hallmark symptom of ME, is due to mitochondrial dysfunction such that they can't produce ATP at the rate the person's body needs it.  Most of us (in the UK and America?) have low iodine levels in our bodies.  Iodine is important for the glands, including breast, thyroid, thymus, and prostate.  She instructs her patients to take 2 to 3 drops of Lugol's 15% before bed, in water.  It supports mitochondria but it also keep the upper gut sterile, which it should be.  Seaweed is a good food source, surprisingly, fish does not.  

So much inflammation comes from the gut, there are so many mast cells in the gut.  Getting the inflammation in the gut under control is a really important part of getting MCAS under control and managed because the inflammation in the gut spreads to other parts of the body.  As an aside, Dr Campbell mentions that an oncologist he knows has told him that a lot of cancer seems to come from chronic inflammation, including the gut, and that iodine supplementation can reduce the chances of developing cancer.  Mitochondrial dysfunction also seems to be critical in getting cancer, because it's the mitochondria that signal cell death when a cell has mutated and is growing out of control.  Inflammation in the gut leads to leaky gut, which means that whole proteins can get into the bloodstream instead of their breakdown products, amino acids.  Inappropriate proteins in the bloodstream wreak havoc, including triggering allergies.  

The lining of the gut is only one cell thick, and their are mast cells directly behind those cells.  If the mast cells swell, they can cause cracks to form between the cells lining the gut (leaky gut).  The first 20 feet of our guts are supposed to be sterile, but since our modern diets include sugar, dairy, and some other things, bacteria that should be killed are instead being fed and multiplying, and causing inflammation.  Eliminating all sugars and refined carbohydrates would be best for most people, but people with MCAS should be low-histamine ketogenic.  Sugars and carbs are addictive- instant gratification.  We want a microbiome, but it should be in the colon.  Taking iodine won't affect that part of the gut.  Eating in season when possible.  You can break the addiction to sugar in 2 weeks- there is a gene that switches off.  Good probiotics help.

Figuring out a medication regime for each person is a slow process of trial and error.  She suggests starting with the over-the-counter anti-histamines, one at a time, in higher doses than on the box.  Once you've found one that works, add in famotidine, which is an anti-histamine for H2 receptors (mostly in the gut, but also in the heart and brain).  After that, mast cell stabilizers are added.  Quercetin at 500mg 3x a day is easy because it's available OTC.  Prescription meds in this category include Ketotifen (in America this has to be compounded because there is no commercial version for oral use), working up to 1mg at night.  If that doesn't help, there is Rupatidine- people take one or the other.  The third medication is Gastrocrom (cromolyn sodium), that stays in the gut.  MCAS with IBS symptoms tend to do well on Gastrocrom.  Each patient takes their own cocktail of medications and treatments.  LDN (Low Dose Naltrexone) is very helpful for many people with MCAS.  

Dr Peet is also using medicinal mushrooms for their immunomodulatory capabilities, to help calm the mast cells.  She emphasizes that the mushrooms must be very high quality.  Mushrooms themselves are high in histamine, but extracts can be made that leave the histamine behind.  The sunshine mushroom is a mast cell stabilizer, reducing histamine and cytokine release from mast cells.  She recommends the company Hefasta Terra, a Spanish company- their products are organic and tested, no fillers, and they grow the mushrooms themselves.  They also do clinical research.  She recommends Myco Sol (sunshine mushroom) and Myco 5, which contains sunshine mushroom, reishi (balances hormones, lowers anxiety, improves sleep, anti-inflammatory, analgesic), chaga (kills cancer cells), shiitake and mistake (treats mycotoxins).  Lion's Mane mushroom crosses the blood-brain-barrier and can stimulate growth of neurons.

Mast cells can live for 2 to 4 years- some are replaced sooner, but it can take patience to heal from severe MCAS for this reason.  New mast cells can become over-reactive when they enter tissues where the existing mast cells are already edgy, this can perpetuate the problem.  Dr Peet says that CIRS (Chronic Inflammatory Response Syndrome) from mold can co-occur with mast cells and can look nearly identical to MCAS but she implies that it needs to be considered separately.  Lyme Disease and Epstein-Barr (HHV-5) can also be very similar.  She says you don't want to miss any of those if they are comorbid with the MCAS.  

Tryptase is an enzyme that is released by mast cells when they degranulate under certain circumstances, and is the source of a great deal of controversy in the MCAS world.  In 2012, a consensus statement (consensus statement 1) was put out by some of the doctors and researchers who had been working on mast cells stating that there needed to be an elevation in serum tryptase for MCAS to be diagnosed.  The year before that, another statement (consensus statement 2) had been put out by about 40 of the doctors and researchers working in the field who made a broader definition of MCAS that was based on the patients they were seeing which was more flexible in its diagnostic criteria.  The authors of consensus statement 2 argued that in many parts of the world, it's not always possible to get a serum tryptase level measured, and they noted that many patients who they were treating with success didn't have elevated serum tryptase levels anyway.  Statement 1 excludes many people with the profile of MCAS and denies them treatment.  Many people feel that if the treatment works, that is good evidence that MCAS is present.