028 Dr Lawrence Afrin – Mast Cell Activation Syndrome

mast cell activation syndrome, mcas, mcad, corebrainjournal,, lawrence afrin
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The Mystery Of Mast Cell Activation Syndrome [MCAS]:
Occam’s Razor, Immunity, & Treatment Failure

Dr. Lawrence Afrin 

It’s important to understand that [Occam’s] Razor doesn’t say the simpler of two explanations is the more likely, nor does it say that the more popular, more widely believed, or easier to understand explanation is the more likely. It doesn’t even say that one explanation is necessarily more likely than two or more. All it says is that if one explanation can account for at least as much of the observed truth of a situation as two or more explanations, then it’s more likely that the one explanation is closer to the true explanation than the two or more explanations.[1]
~ Lawrence Afrin

The great thing about science is that it’s true whether you believe in it or not.
~ Neil deGrasse Tyson

Coalescent Thinking For Chronic Treatment Failure

Jennifer’s Mast Cell Activation Syndrome Story 

“Consider your life.

Now consider how your life might change if things like loud noise, heat, strong emotions or stress, odors or even being startled could cause you to have an allergic reaction. Imagine suffering allergic reactions so frequently that you prayed for just 30 seconds of real relief each day. Imagine dreading the next response, because it may bring vomiting and diarrhea, convulsions, unresponsiveness or even paralysis-like symptoms.

Jennifer Robin, who was diagnosed with mast cell activation syndrome (MCAS)[2] in 2014, faced these challenges daily until she received treatment in 2015 from the University of Minnesota Health Hematologist/Oncologist Lawrence Afrin, MD, an internationally respected expert on MCAS.

‘The disease can be a life-ruiner. I was unable to work, live independently, drive, have a social life—or have much of any life,’ said Jennifer.”

Her Immunity Issues: ‘The world just wasn’t safe for me.’

Although she was always very sensitive to allergens, Jennifer’s overall health began to nose dive in her early 20s. A Maryland resident, Jen was forced to resign from her job when a variety of physical symptoms—including severe headaches, cognitive difficulties, and fever-like problems—began to affect her health.

In 2010, Jennifer was misdiagnosed with Lyme disease. Treatment for Lyme disease did not alleviate her symptoms, which became more severe over time. Jennifer began experiencing seizure-like episodes, slurred speech, insomnia and muscle weakness.

‘I was so sick and pretty much bed-bound for a couple of years. My parents had to help me to the bathroom two feet away,’ Jennifer said. ‘No doctor seemed to have any clue what was happening.’

In 2013, Jennifer was diagnosed with postural orthostatic tachycardia syndrome (POTS – a dysautonomia syndrome), which is marked by a drop in blood pressure when standing. That same year, she was also diagnosed with Ehlers-Danlos syndrome (EDS), a group of genetic disorders that primarily affect connective tissue in skin, joints and blood vessel walls.

But neither diagnosis seemed to account for all of Jennifer’s difficulties, which continued to become more severe. At times, she felt the tissues of her throat closing—a life-threatening occurrence known as anaphylaxis.

In 2013, the two doctors that diagnosed her with POTS and EDS both referred her to Lawrence Afrin, MD, who was transitioning from the Medical University of South Carolina to a new position at the University of Minnesota Medical Center. Afrin is one of the most prominent international experts on mast cell activation syndrome (MCAS).

Dr. Afrin’s Insightful Discovery For Jennifer          

…misunderstandings and neglect create more confusion in this world than trickery and malice. At any rate, the last two are certainly much less frequent.
~ Goethe – 1774
Don’t assume bad intentions over neglect and misunderstanding.
~ Hanlon’s Razor – 1990

mast cell activation syndrome, mcas, pots, eds, histamine, immunity

Dr. Lawrence Afrin

‘MCAS is a chameleon, difficult to identify for many reasons,’ Afrin said. ‘It presents with different symptoms—which are often inflammatory or allergic in nature—to varying degrees in different places in the body.’ To make matters worse, many healthcare providers are not yet familiar with the condition. Though more research on MCAS is emerging, relatively little information exists about the syndrome in medical literature. [Must: see the link to Dr.  Afrin’s excellent book on MCAS below.]

At a follow-up appointment with Afrin months later, two of Jennifer’s lab results came back positive, including her level of histamine, which was five times the normal limit. Histamine is a chemical neurotransmitter that causes allergic responses. That day, Afrin diagnosed Jennifer with mast cell activation syndrome.

Mast cells, which release histamine, are a critical component of a person’s immune system. But in patients with mast cell activation syndrome, the mast cells are over-active. Many of Jennifer’s symptoms were allergic reactions—caused when her hyperactive mast cells responded.

Jennifer’s Comment On Dr. Afrin

‘Out of the hundreds of doctors that I have seen, it was Dr. Afrin who saved my life,’ Jennifer said. ‘Never once did I feel the need to ‘prove’ that my symptoms were real or of physical origin as I’ve had to with other physicians. He just believed me.'” [3]

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Dr. Afrin’s Work With MCAS Also Serves As a Metaphor For The Evolution Of Neuroscience

Molecular measures also change the rules of the psychiatric diagnostic and treatment game. Why? Improved target recognition for contributory molecular mind variables offers increased precision and more predictable outcomes.  The complexity of mind science requires more comprehensive thinking and data inquiry. Insufficient knowledge based upon old science is just that – insufficient. Diagnosis by appearances is not categorically wrong – far too often it’s simply inadequate – as it was in my practice before I had to admit defeat with then-best diagnostic labels and traditional psychiatric medical information.

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Dr. Afrin’s Metamorphic Book

My Strong Recommendation To Mind Science Professionals At Every Level: Read It Now Afrin, MCAS, Mast Cell Activation Syndrome, MCAD

MCAS is a global problem, not limited to Dr. Afrin’s post in Minneapolis at the University of Minnesota. In my offices, I’ve missed it for years because this information didn’t arrive on my doorstep wrapped in a fine Amazon package.

If you care about or care for, chronic, refractory treatment failure, both medical and psychological/psychiatric – you absolutely must first listen here to this introductory CBJ/028 interview with Dr. Afrin, then you must read his fresh, engaging, unpretentious, life-changing book. Read it even if you’re a Ph.D. psychologist, an LPC or LCSW – and certainly, if you’re an FNP, PA or trained medical professional at any level – especially Family Practitioners and Internists on the front lines who repeatedly witness treatment failure.

Why? Because you often see patients like Jennifer in your offices and regret it when you don’t know what to do.

Overcome your immunity denial, your concern about litigation [see the multiple references below] based upon challenges from dogma and disbelief, and dive into these refreshing waters not only for the broken souls in your office, but for your well-being, self-mastery, and your job-well-done legacy. This book builds character.

Dr. Afrin never claims, even in the context of his earnest, passionate, opinionated self, to have all the answers. Just read a few paragraphs and you’ll quickly feel that he’s an old buddy you met out at your lake house one summer in Minnesota. He’s humble with what he didn’t know then, and what he doesn’t know now.

He’s just smarter about MCAS than we are.

His relentless search, his fresh answers, directly inform our work every day as examples for both intelligent process and informed content.

Book Alert

I’ll warn you from the outset, you won’t get every detail in your first read of Never Bet Against Occam – as I didn’t at my first cursory read. But don’t let that dissuade you. The language and concepts are different, and Dr. Afrin ties in so much for our collective next steps in Mind Science on immunity, chronic illness, cognition, and the pervasive failures with psychiatric medications – that’s the reason this one is essential. [RE: Histamine matters – Dr. William Walsh agrees, as it creates issues with neurotransmitter imbalances through dysregulation of methylation and transporter proteins at this CBJ/025 Interview.]

You may already know: that Prozac doesn’t improve MCAS and will often interfere with the treatment.  Biomedical insights, informed targets, offer new hope when any of us are less informed. If you don’t know what you’re shooting at you simply can’t hit it.

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A Very Short Video on Mast Cells And Histamine – 1.59 min

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Dysautonomia and MCAS Lecture Dr. Afrin –  59:48 min

Mast Cell Activation Syndrome & Dysautonomia – Dr. Lawrence Afrin from Dysautonomia International on Vimeo.

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First Easily Forward This Audio Message Link To a Friend

http://corebrainjournal.com/028

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References For This CBJ Article

  1. Afrin M.D., Lawrence B.; Neilsen Myles, Kendra (2016-03-14). Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity (Kindle Locations 1560-1566). Sisters Media, LLC. Kindle Edition. – Global Amazon Link
  2.  Recommended: Mast cell activation disease: a concise, practical guide for diagnostic workup and therapeutic options – Pub Med Reference  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
  3. Jennifer on Mast Cell Activation Syndrome & Dr. Afrin, University of Minnesota Health Blog 
  4. An excellent 2-hour lecture on Mast Cell Activation Syndrom by Dr. Afrin: On YouTube

Must Download and Read: Additional References On MCAS

  1. Afrin LB. The presentation, diagnosis, and treatment of mast cell activation syndrome. Curr Allergy Clin Immunol 2014 Sep;27(3):72-83, http://reference.sabinet.co.za/webx/access/electronic_journals/caci/caci_v27_n3_a2.pdf [Excellent 12 pg. PDF Summary – 70 references]
  2. Afrin L.B. (2013). Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome. Mast Cells: Phenotypic Features, Biological Functions, and Role in Immunity; Murray, D., ed., Nova Science Publishers, ISBN 1626181667, 9781626181663, pp. 155-231, available on-line at https://www.novapublishers.com/catalog/product_info.php?products_id=42603  [Excellent, More Details 77 pg. PDF – 375 references]

Dr. Afrin’s Websites

Dysautonomia Vimeo Channel

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Get on Dr. Afrin’s Book Drawing below – it’s closed in two weeks.

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Complimentary 028 Afrin Drawing Closes Midnight July 26, 2016:

For: Never Bet Against Occam

– Enter The Drawing Here –

http://www.corebrainjournal.com/028drawing

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Your Next CoreBrain Journal Episode

029: Pam Stokes-Eggleston Pamela Stokes-Eggleston is the founder of Yoga2Sleep. She teaches yoga, meditation, and best practices to cope with insomnia, sleep deprivation, and stress. Her classes serve unique, often underserved populations, including veterans, service members, and their families. As the daughter of an Air Force veteran and granddaughter of an Army veteran, she fully understands the downstream effects of combat stress. But it wasn’t until she became the actual caregiver of a wounded warrior, her husband, that she struggled with sleep deprivation and anxiety herself. Pam is quick, engaging, fun and fast on her feet as shares fresh perspectives on recovery from post trauma, TBI, and the stress of everyday life for military spouses. In this episode, she tells us details about her personal evolution and significant contributions.

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Produced By Studio Center – 7 Locations Nationally
Studio Center.com

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Our CBJ hosting objective is simple: upgrade mind and brain data through informed dialogue with neuroscience experts for more predictable, more comprehensive solutions. Today's technology drives significantly improved mind-prognosis - beyond traditional psychiatric measures. Inaccurate labels, speculation, and guesswork are out - critical thinking, data, and measurement are in. Let's work together to connect advanced biomedical wisdom with everyday street reality. Subscribe here. Pass it on.

7 Comments

  1. […] Inhibition of Lyn function in mast cell activation by SH3 domain binding peptides, Biochemistry, 1997, 36 (31), pp. 9388–9394 Listen/see Mast Cell Activation Syndrome with Dr. Lawrence Afrin here at CBJ/028 […]

  2. Crystal on 07/20/2016 at 11:56 PM

    Dr. Parker, Thanks so so much for posting this. My once super healthy life took a nose dive after suffering random severe allergic reactions that have been diagnosed to be MCAS or suspected Mastocytosis by my local immunologist. He referred me to Mayo, but in listening to this entire podcast, I think I need to get on a plane to see Dr. Afrin instead. I suffer anaphylaxis as a routine event. I live on the east coast – can you PLEASE connect me to Dr. Afrin? Charlotte.keefer@yahoo.com

    • Dr Charles Parker on 08/07/2016 at 7:04 AM

      Charlotte,
      Will be better able to jump on this late this week, but will ask Tiffany to start that process asap as she may have additional connections w Dr. Afrin’s staff.

      All the best!
      cp

  3. Laura Seibert,LCSW on 07/20/2016 at 1:55 PM

    Hi Dr. Parker,
    I have POTS, autonomic neuropathy, Ehler-danlos, MTHFR, and my POTS is considered idiopathic. When I was working for you I came down with a virus, which, I have been told, attacked my autonomic system. I have seen Dr. Chemali and a host of other doctors. No one doctor can evaluate how all my symptoms are connected. In other words, there is no whole systems provider. I see my PCP who tries to manage it all. But I have a neurologist, cardiologist, gastrologist, geneticist, urologist, etc… I suspect some kind of mast cell disorder because I constantly itch. The 24 urine test came back negative. No one can figure out the cause of my POTS, and as you know, unless that is found, I wil always have it. TriCare refuses to pay for the mito testing my geneticist wants. So my question to you is, do you think you can help me? You are aware of how disabling this is. Fortunately, I started my own practice, part time, which keeps me sane. In my practice I have diagnosed almost 10 people referred from neurologists for anxiety as actually having POTS. Anything I can find out for myself to improve my symptoms I can pass on to others.
    Thank you for being ahead of the curve in this field, you have been researching how illness of the body affects the brain for a long time now. Others are only now beginning to appreciate this connection.
    Laura Seibert,LCSW

    • Dr Charles Parker on 08/07/2016 at 6:58 AM

      Thanks for weighing in here – and yes I well remember your decline. With Tricare’s excellent support we can certainly start a more advanced diagnostic process, then, depending on those results we do have the option of s consult w Dr Afrin. I’ve had outstanding recoveries just dealing w underlying immunity issues here in Va Beach. Connect first with Libby and get onto CorePsych schedule ASAP thru http://corepsych.com/appointments
      If we did testing previously please drop it by the office so we can sort out those next steps.

      Talk soon!
      cp

  4. Hilary on 07/14/2016 at 9:48 PM

    Great show! Thanks for continuing to educate the masses! It is awesome to hear doctors who are passionate AND curious about science.

    THANK YOU!

    • Dr Charles Parker on 07/16/2016 at 10:06 AM

      Thanks Hilary,
      Folks like you make a big difference – thinking and doing!
      cp

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