AutoImmunity, Immunity, & Mast Cell Activation Syndrome [MCAS]
Occam’s Razor & Treatment Failure – 2
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.
~ 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
133 Dr. Lawrence Afrin – This CBJ/133 episode takes on the issue of the pervasive, yet often under-recognized, medical mystery of Mast Cell Activation Syndrome, it’s crippling, life-threatening effect, and it’s absolute relevance in the evolution of understanding important immunity nuances of mind science.
Ed Note: Yes, this is a republish  of the second most popular Episode download here at CBJ after more than a year of reports from more than 100 thought-provoking neuroscience consultants and patients. MCAS with Dr. Afrin bears repeating for our growing international list, with many new global listeners since then. We first published this piece in July ’16 at CBJ/028. [It’s second in total download numbers to Dr. Bill Walsh on Methylation at CBJ/025. We welcome our increasingly informed audience – note that these two apparently arcane topics present as the most frequent downloads.]
Dr. Afrin is charming, refreshingly articulate and passionate about his work as one of the leading authorities in the world [my perception, not his PR] on this exceedingly complex condition. You may not understand some of our conversation – as you will hear me also asking for clarifications – but this episode is an absolute must for anyone with a complex untreatable biomedical condition.
MCAS should be on everyone’s radar. Listen up as MCAS effects and estimated 10% of the general population – and directly affects the brain, with both mood and cognition conditions. It’s where the rubber often meets the rocky immunity road.
Report From The Front: Jennifer’s Mast Cell Activation Syndrome Story
Jennifer’s story points to several clinical issues:
“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, first diagnosed with mast cell activation syndrome (MCAS) 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, a common misunderstanding. 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 an increase in heart rate 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).
Listen up as he weighs in on this challenging condition.
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
‘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 overactive. 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.'” 
Dr. Afrin’s Comments Linked Here at CBJ/133
- I started Mast Cell inquiries from a position of pure serendipity [3:17]
- Re: a complicated patient: my first thought, which proved inaccurate, was mastocytosis [7:04]
- I tried a variety of esoteric tests & made almost every mistake possible [8:12]
- Her transformation was just stunning – and then another person was referred with an odd, non-responsive red cell aplasia [12:12]
- I realized after my first two patients that MCAS could present very heterogeneously [17:55]
- Thanks to the Internet patients have been figuring this [diagnosis] out [21:48]
- MCAS can affect almost every system of the body – even beyond the immune system [24:55]
- Psychiatric considerations beyond the ubiquity of brain fog relevant to MCAS [27:03]
- Mast Cell disease is a highly prevalent condition – est. 10% of the general population [30:02]
- Unless we learn to ask the right questions we miss significant psychiatric cohorts with, for example, chronic fatigue [32:43]
- The complexity of MCAS and the application of Occam’s Razor [35:36]
- The ubiquity of long standing dermatographism with MCAS [37:13]
- The challenge for accurate testing for the laboratory team [38:49]
- The majority of MCAS patients are misidentified as “psychosomatic” [42:44]
- Given the extreme heterogeneity of presentation also creates a marked heterogeneity in treatment response as well [46:19]
- With care these MCAS challenges can be overcome [47:52]
Dr. Afrin’s Work With MCAS Serves As a Metaphor For The Evolution Of Neuroscience
Molecular measurements now 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 brain 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.
Dr. Afrin’s Metamorphic Book
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 an 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 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, LCSW, or 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 unexplained 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 misunderstandings 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 new answers, directly inform our work every day as examples for both original process and enlightened content.
I’ll warn you from the outset; you won’t get every detail on 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 or with – you simply can’t hit that amorphous target.
A Very Short Video on Mast Cells And Histamine – 1.59 min
Dysautonomia and MCAS Lecture – Dr. Afrin – 59:48 min
First Easily Forward This Audio Message Link To a Friend
References For This CBJ Article
- 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
- Recommended: Mast cell activation disease: a concise, practical guide for diagnostic workup and therapeutic options – Pub Med Reference:
- Jennifer on Mast Cell Activation Syndrome & Dr. Afrin, University of Minnesota Health Blog
- An excellent 2-hour lecture on Mast Cell Activation Syndrom by Dr. Afrin: On YouTube
- Autoimmunity and Mast Cell Activation – a PDF Download
- Update: A recent article at Mast Cell Research by Dr. Afrin regarding his work | July 20, ’17
- Twitter: https://twitter.com/mastcellhelp
- EDS Wellness
Must Download and Read: Additional References On MCAS
- 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]
- 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 online 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
We will reopen Dr. Afrin’s Book Drawing below – it’s closed in two weeks.
Complimentary 133 Afrin Drawing Closes Midnight July 28, ’17:
For: Never Bet Against Occam
– Enter The Drawing Here –
Your Next CoreBrain Journal Episode
134: Dr. Stephanie Seneff is a Senior Research Scientist at the MIT Computer Science and Artificial Intelligence Laboratory. She received the B.S. degree in Biophysics in 1968, the M.S. and E.E. degrees in Electrical Engineering in 1980, and the Ph.D. degree in Electrical Engineering and Computer Science in 1985, all from MIT. For over three decades, her research interests have always been at the intersection of biology and computation: developing a computational model for the human auditory system, then understanding human language to develop algorithms and systems for human-computer interactions, as well as applying natural language processing (NLP) techniques to gene predictions. She has published over 170 refereed articles on these subjects and has been invited to give keynote speeches at several international conferences. She has also supervised numerous Masters and Ph.D. theses at MIT. In 2012, Dr. Seneff was elected Fellow of the International Speech and Communication Association (ISCA). Her extraordinary insights change the game of appearances with reliable, actionable data. Must listen.
Produced By Studio Center – 7 Locations Nationally
- Core Brain Journal--NeuropsychologyMay 25, 2017 by Dr Terry James Gingras from United States
Just finished session 118 with neuropsychologist, Dr. Braun. Excellent content presented in a relaxed style. I'm a neuropsychoogist with a specialization In ADHD so I appreciate both Dr. Parker's and Dr. Braun's efforts demystifying the practice of neuropsychology.
- Exceptional interviews !!May 16, 2017 by MCVGRL from United States
Core Brain Journal, with Dr. Charles Parker is a must listen for a wide audience. If you are either the individual, suffering from complex personal medical/ psychological issues; or a family member, friend... please tune in often.
- Podcast 107 (Brain Health) - Very informative!April 13, 2017 by ad1978mke from United States
I especially liked this Podcast because it provided a wealth of valuable brain health research and tips in an approachable, easy-to-listen-to format. The rapport between the Guest Speaker (Dr. Braun) and Host (Dr. Parker) was evident, and I hope to hear another Podcast with this Guest Speaker!
- Top quality informationFebruary 5, 2017 by MD Ireland from Ireland
As a functional medicine doc I found this iterview stimulating, inspiring and it is full of clinically useful information
- FascinatingFebruary 1, 2017 by jinki1 from United States
If you love science and psychology, then this is for you. The brain is such a mysterious machine, and listening to experts discuss how it works is fascinating. This seems like a pick-and-choose type podcast: I'll skip the shows focusing on estrogen and alzeimer's and go for creativity, anxiety, music, and others. But what I've listened to so far is great.
- My Brain Thanks You!January 13, 2017 by B. Keenan Johnston from United States
Thanks for shedding some much needed light on issues of the brain. I recently became interested in the subject when I was listening to NPR do a segment on neuroplasticity. I could never remember the name of the author, but it helped me find this great podcast!
- Flipping Junkie ReviewDecember 23, 2016 by Danny Johnson -Flipping Junkie from United States
Awesome podcast! I really loved the bipolar episode. Wonderful insight into these issues. Keep up the good work!
- “How I Found Myself” Dean RobertsDecember 2, 2016 by Don Hutcheson from United States
I just had the pleasure of listening to Dr. Charles Parker’s latest interview with Mr. Dean Roberts on the topic: “How I Found Myself.” The thesis of this remarkable podcast is that the difference between treatment success and failure for conditions such as depression, anxiety, ADHD, PTSD and others is often the result of omitting crucial brain, biomedical, and functional neuroscience information and insights. Well done and much-needed. Wish you continuing success!
- I may be a geek...November 19, 2016 by JHHealy from United States
But as an addictions recovery coach I find this brain science utterly amazing! Great show, love it!
- Keep up the Great work Dr ChuckNovember 18, 2016 by imupat3am from United States
Just finished listening to the lateste episode with Dr Kelly Morrow-Baez the epsiode was about her and working with women ages 45-60.... Great podcast will be listening to more
- GROUND SHAKINGNovember 13, 2016 by Restlesstaxpayer from United States
Your shows are always very informative but the last two with Tom O'Brien andDavid Siever are absolutely revolutionary every doctor in the country should listen to both of them twice a day I cannot overstate how important this information is I am sending links to everyone I care about Thank you
- 21st Century PioneerSeptember 16, 2016 by Louis Di Bianco from Canada
Dr. Charles Parker offers us cutting edge knowledge in our rapidly changing world. The episde on music healing si a breath of fresh air. We need more natural healing alternatives like this one. It's easy to understand how music heals when you know that everything in our world is energy. Thank you for this important show.
- Episode 46 - such important work!September 16, 2016 by Michelle at Inner North Star from United States
I have done quite a bit of work around Post Traumatic Stress, being a Veteran and First Responder myself. This work with music/sound therapy is very interesting and this episode is well worth the listen. This podcast has relevant information we can all benfit from!
- Good StuffJuly 1, 2016 by namtrok from United States
While this is stuff I don't think of each day, Dr Charles presents it in a great way and I feel smarter each episode. Thanks! Paul from NomadTogether.com
- Very informative and filled with valueJune 19, 2016 by Jimwj from United States
This is an excellent podcast which provides smart, science-based, information which focuses on the mind and body. Great podcast. Check it out.
- Very informative!June 13, 2016 by Thomas O'Grady, PhD from United States
I’ve listened to a few episodes and this was an interesting podcast.
- Loved the episode with peggyJune 11, 2016 by Courageous1 from United States
Great work Charles - Love the episode with Peggy about anxiety. Keep it up!
- Fresh Mind ScienceJune 10, 2016 by ADHD reWired from United States
This is a great podcast for anyone interested in learning more about the brain and are looking for solutions. Great for clinicans, coaches and consumers. Thank you for creating this podcast!
- Valuable InformationJune 10, 2016 by dannytay92 from United States
Dr. Parker is a friendly, easy-to-listen to host, and this content is so valuable. All of us know people who could benefit from the specific topics of each episode.
- Truly Meaningful ContentJune 10, 2016 by No More Obstacles from United States
If you have a loved one with bipolar disorder or live with it yourself, do NOT miss that episode! Dr. Parker brings serious science to specific issues in an accesible, applicable way. Really, really good.
- Stellar podcast!May 27, 2016 by Tara Williams Phone from United States
I'm all about the mind and body connection, it's time we American's realize the power of both. There are so many amazing things to do in this world and I love that Dr. Parker is reminding us!
- This helpsMay 27, 2016 by JenRiday from United States
My brother-in-law has bipolar and it's interesting to listen to this and hopefully better understand him. Very helpful!
- The Complex made Simple - #PWpeeps - Doc and JockApril 29, 2016 by JoeShu2326 from United States
The brain is complex and the issues surrounding often convoluted. Not on this podcast! Dr. parker breaks it down simply and concisely!
- FantasticApril 22, 2016 by HappyCoffeeLady44 from United States
Finally someone who brings the mind and body together!
- ExcellentApril 16, 2016 by M_Glover_88 from United Kingdom
This is a fantastic show. Really great info about a subject I have a huge interest in. Looking forward to more!
- Very smart podcast about the epic mind.April 16, 2016 by dustspecks from United States
Very smart host with very smart guest. This is a great show that can be utilized to dive into the inner workings of the mind and get up to date information about the mind.
- Excited!April 15, 2016 by SeeinADHD.com from United States
As an ADHD Coach, I'm excited to have another quality podcast to recommend to my clients. The mind and body are indeed connected, I'm looking forward to more!
- Excellent!!April 15, 2016 by Italykittyjc from United States
Excellent podcast with awesome content. Very well done. Very informative. Looking forward to listening to more episodes. Great job.