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Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity

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In 2008 Dr. Afrin started coming to understand that a newly recognized type of mast cell disease, now called mast cell activation syndrome (MCAS), was the underlying diagnosis in many patients he was seeing who were each suffering large assortments — quite different from one patient to the next — of chronic multisystem inflammatory illnesses of unclear cause. Dr. Afrin soon gained experience that MCAS is far more prevalent than the only mast cell disease previously known to medicine (the rare disease of mastocytosis) and that most MCAS patients, once accurately diagnosed, can eventually find significantly helpful medications targeted at the disease. The frequency and magnitude of the improvements Dr. Afrin has seen — even the relief that comes from finally having a unifying diagnosis other than "psychosomatism" — have spurred him to focus in this area, not only tending to the needs of his patients but also pursuing research to advance our understanding of the disease and helping to educate other professionals who in turn can help even more of the many people who have long been suffering not only the symptoms of the disease but also the natural concern of not understanding why one would be so "unlucky" to have acquired so many medical problems. As it turns out, such patients are not so unlucky and truly have just one root issue (and a very common one at that), which has the biological capability to develop, directly or indirectly, into most or all of their previously diagnosed problems. There is a great deal yet to learn about this, but even with just the present very limited understanding, the opportunity to diagnose and help patients with MCAS seems to be enormous and Dr. Afrin felt a description of the disease, written for the general public, might help lead some MCAS patients on a journey to diagnosis and improvement sooner rather than later. Dr. Afrin hopes this book will help people who might have, or do have, MCAS. A portion of the proceeds of purchases of this book will go to support research and education in this area.

472 pages, Paperback

Published March 15, 2016

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Lawrence B. Afrin

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Displaying 1 - 30 of 42 reviews
Profile Image for Camie.
893 reviews186 followers
October 10, 2016
One of my daughters age 29 and I have a disorder called Mast Cell Activation Syndrome, which in effect means our Mast Cells can over react ( and often do) to certain triggers and produce allergic type symptoms including the life threatening kind called anaphylaxis. If you've never heard of Mast Cells you are not alone. Part of the difficulty with this devastating disorder is the lack of knowledge about it in the medical community. Luckily Dr Laurence Afrin , a renowned hematologist / oncologist at the University of Minnesota has just this year published this helpful book. Hallelujah , he speaks my language !! With case studies and explanations of the syndrome along with treatment ideas , to be implemented by your physician this book could be a Godsend to those who are having allergic symptoms that cannot be explained. Much of it is review for me as I've been studying it for years, but I do like Dr Afrin's theory that Mast cell activation is probably the root cause behind many other issues, and in getting them under control, which takes constant vigilance, other diagnosed problems may be alleviated. We are on a waiting list to travel across country for appointments to see Dr Afrin who is booked out until 2018. Meanwhile we'll do our best to stay off life-flight helicopters. 5 stars to the right audience
Profile Image for Candie.
55 reviews
April 14, 2016
Finally some easy to read information on MCAS. I plan to give all my medical team a copy as many are not familiar with MCAS and this is easier than a box of research papers. Dr. Afrin writes in a brilliant yet easily understood manner and still touches the medical professional, researcher, therapist and patient as well as the patients family and friends. Tears flowed as I read case after case so much like mine. two packs of post it notes and a whole brand new highlighter I'm finished. This ties it all up for me. so thankful to Dr. Afrin.
Profile Image for Leslie (PaperAndKindness).
51 reviews3 followers
June 21, 2016
Dr. Afrin does an excellent job at providing enough detail in the specific case studies while at the same time not drowning the reader in complicated chemistry. Afrin likes to use what he refers to as "$400 medical words," but the medical dictionary included in the book was able to explain any terms I wasn't familiar with. I would recommend this book to anyone who suspects that they have a mast cell disorder.
Profile Image for Aggie.
64 reviews2 followers
April 24, 2016
I wasn't expecting a bunch of case studies- it became a bit repetitive and uninteresting to me. Good info from an obviously compassionate physician.
Profile Image for Laura.
299 reviews7 followers
August 19, 2021
His approach to medicine and his perserverance in seeking answers for his patients is commendable. The book itself covers a wide range of systems and clinical reviews of patients impacted by MCAS. The book at times tried to do too much; written for both patients and doctors, two separate books may have been a better approach. He also may have benefited from included some cases that presented to him as possible MCAS but where it was ruled out. As it stands, he seems to see MCAS in every patient, probably reinforced over time by his reputation and referrals, but nonetheless forcing the reader to question his objectivity somewhat which is frankly unfortunate. To me the strongest sections were the narratives summaries of various systems impacted by MCAS and also his critique of medical colleagues and his call to action for specified further research. Given how long ago this book was published, and how rapidly science/medicine can progress, and update to this book or a next addition would be most welcome.
Profile Image for Sharon Rainey.
Author 3 books44 followers
October 1, 2017
If you have MCAS this is a must read

Finally, an answer to a lifetime of bizarre symptoms. This book can be tedious in places, but it fully answers the questions. It gives patients hope. And a solution!
Profile Image for Sarah B.
813 reviews13 followers
January 17, 2022
Dr Afrin has packed so much information into this book it is just amazing! And even though I have watched countless long youtube videos with him (many are interviews or where he talks at some gathering) I still have found countless new things in this book. So if you are on the fence about getting a copy of this and you suspect you have MCAS know you will find new information in here. Or I did anyway... Of course we are all different and MCAS is a very tricky disease.

For one did you know that it is actually classified as a hemotologic disease? Yes, a blood disease! I had always thought it was the immune system misbehaving as mast cells are part of the immune system but it is actually a blood disease as the mast cells are made in the bone marrow.

And as I read this I could easily spot familiar symptoms as he talks about the various body systems. Generally he gives some sample patient accounts and then discusses how MCAS can affect those systems. And since it is a multi system disease it can affect virtually everything. The problem is that each patient is different with different symptoms. And truthfully I was amazed at some of the issues his other clients had as they are vastly different than what I experience with it. Like many have problems with their blood - all sorts of blood problems - including too much iron or too much of something else like white blood cells. Often it will be for "no apparent reason". That reason though is MCAS.

It seems my issues with food is somewhat rare among his clients. But I certainly have many other issues he mentions in the book too, like poor healing, easy bruising, feeling faint, reacting to things in the environment, feeling cold, the dermatographism (skin writing) etc. And my mother had suffered the idiopathic epistaxis (nose bleeding). Which makes sense as he says it runs in families but they often have different versions with different symptoms. I never get nose bleeding. But I do have a cousin that gets nose bleeding... I have EDS too.

One thing I found very helpful in here is when he discuses the tests for the diagnosis: both blood tests and the urine tests. He says you should be having a bad day when you do the tests. Because I wasn't too sure if you do the tests on a good or bad day? So this certainly answers that! And the things in here make me all the more positive that I do indeed have this. And the book says it's more than likely caused by multiple gene mutations, probably in the KIT gene. I had never heard of that gene, but then he states at the end the genes are much, much more complicated.

One fascinating detail in here is the fact the mast cells are the things that actually heal you. Without mast cells you could not heal. Rats without them don't heal at all. I sure didn't know that!

Another interesting tidbit is the fact they have not been able to duplicate MCAS in animals yet. You know, in mice or rats. They don't even understand the disease yet or why it happens. What causes it. They have only discovered the tip of the iceberg and are starting to learn about it.

Most of the things I found the most interesting in here were the odd little facts. And I just loved the case stories! They were just so fascinating. And the book is so very easy to read too as it's written in a conversation type style and tone. It's like he is talking directly to you. And while he does use some very complex terms he has a nice glossary at the back that easily explains them all.

And reading this - especially the chapter near the end where he discusses treatment - further verifies the idea you have to avoid triggers. Because having stable mast cells is very important (especially these days). Of course each person is different and reacts to different things.

But this book is not really about treatment. He does name a bunch of drugs he has tried on various clients throughout the book. I suppose that could give one an idea of what to try if you are interested in drugs and if you have a doctor willing to try it with you. But realize the majority of the book is informational and stories. It's his experience of how he first learned about MCAS and realized it was the invisible problem affecting so many of his weird clients, weird because their issues just didn't make sense. They were sick and maybe they had features of X disease but it wasn't X disease either...so what was it?

He also discussed the future and what it might hold. Hopefully it will get better known and easier to diagnose.

And what book on MCAS would be complete without mentioning EDS? He mentions both hEDS (he calls it by the old name of Type 3) and autism. We know the mast cells are located in the connective tissue and that it is the connective tissue that is messed up in EDS. But he asks several important questions about this. Things that need to be looked into. Unfortunately there are no answers yet. Maybe someday. Hopefully. He wondered if it was the mast cells themselves that was affecting how the tissue was connected to each other and that might be part of the cause? No one knows.

He wrote this book in 2015. I wonder what he has learned since then? I know in modern interviews he says that roughly 17% of the US population has MCAS. Its often undiagnosed and that most people had symptoms since childhood but they just don't realize that is what it was. I know I was chronically sick as a kid with "colds" that would last for a month in winter. He mentions these things. He also states how important it is to get a very detailed medical record - medical history. All the odd little things. You will be amazed at some of the things people come to accept as normal so they never mentioned it to the doctors. I kind of think that way too. My family did. They thought you didn't go to doctors unless you were severely ill...

Another really important thing he mentions in here is if you are a bleeder or a clotter (in terms of blood)... I think that is something you should know! It can affect any procedure you might need.

Actually, I am surprised he hardly mentions diet in here at all. I have actually found that the most helpful in my case. Limiting what I eat. Dr. Afrin seems to believe more in drug treatments than in diets I guess. Or maybe his clients are not willing to try diet changes. I know most people are very attached to their foods. Yet it is the thing that had brought me the most success. My airborne reactions sure do get way worse if I eat things I react to and then I'll even get these strange burning hives. So in my case diets do work.

It would be great if he would write another newer version of this.

And I know in recent interviews he has stated that he believes that people who get the long haul actually probably had MCAS before they got sick. The problem is it's often undiagnosed. And doctors don't know what it is, so you end up running from doctor to doctor.

I will certainly think about what I have read in here and will tell others I work with about this information I have learned. It's very helpful. And as I have stated, there is many important bits in here not in the interviews and that stuff is very well worth buying the book. I am glad I bought this. And realizing it is actually a blood disease certainly changes things.
Profile Image for Andreea Popescu.
11 reviews
October 13, 2022
I have (chronic) MCAS, and after reading this book, I feel relief, I am not alone, and I found myself on many pages of this book.
Profile Image for Teri.
287 reviews70 followers
May 9, 2021
It's more like case studies, so I think it's more useful for doctors to be honest, or people who just want to read all they can about it. I was hoping for more of a plan - ok you were diagnosed, now what? Mixed feelings about this, I hope he writes something more for the layman, he's the expert in the field. I do worry that the case studies are so varied and unclear that it's going to make it harder for those who are just looking for answers (like, if they are wondering if they have this condition, or is this symptom part of MCAS). Unfortunately too many people are quick with the Google diagnostics (see MCAS reddit for examples) and it makes it harder for actual sufferers...

Bottom line - you will not figure out if you have MCAS from this book. You might see yourself in some of the cases, but do not take this as your A-HA moment. Go see a specialist. If you are already diagnosed, you might find some reassurance - or not.
Profile Image for Jill S (Love Affair With Fiction).
646 reviews64 followers
January 1, 2021
This was an incredibly eye-opening read. I have been diagnosed with MCAS (Mast Cell Activation Syndrome), but no one could really explain everything that was going on to me. As my health continued to decline, and doctors were just throwing up their hands or not believing what was happening before their eyes… it was getting harder and harder to keep hope alive. Picking up this book and reading through it brought back a spark of hope for me.
I look forward to my appointment with Dr. Afrin—based on his book, I am crossing my fingers that I have finally found a doctor that will take everything seriously and will not be overwhelmed by the state of my health. And if not — this book has at the very least showed me that I am not alone.
Profile Image for Kate.
156 reviews11 followers
August 26, 2016
This is a weird, weird book. Afrin seems to delight in the fact that much of what he says is inflammatory (pun intended). His writing style veers from shockingly casual (two chapters begin, "Oh man, how to start this chapter?" and the chapter on GI issues is titled "Well, We're in a World of S***t Now.") to an alphabet soup of technical terms and acronyms. The last 200 pages of the book are a glossary.

There is some excellent, excellent information in this book. Afrin had explanations for, and case studies of, almost all of my most bizarre symptoms. I will be passing this book around to other sick folks in my life, but it will come with a warning.
300 reviews2 followers
March 3, 2018
While this book could be a lot to read/process at one time (paricularly if you suffer from brain fog) it was extremely informative, well thought out, and not too difficult to understand. The case studies allow both patients and healthcare professionals insight into the disease. As a patient I learned that the vast majority of symptoms I had, as well as diagnoses, could be attributable to MCAS. It opened my eyes to just how big this disease is and the many ways that it can affect the human body.

If you are interested in MCAS, medical knowledge, or chronic illness this is certainly an interesting read.
Profile Image for Dawn Davies.
Author 2 books34 followers
May 29, 2022
I found this book to be one of the most important health books I have ever read. As someone with mast cell issues that affect my daily life, I learned about Dr. Afrin's path toward learning to identify and diagnose MCAS. It's probably not an easy read for everyone, but I do understand physiology, chemistry and medical terminology, and I read it within 24 hours, marking up the book with marginal notes on nearly every page.

I don't know why more doctors don't think this way. I recommend this book if you have mast cell issues, histamine intolerance, chemical sensitivity, allergies, POTS, dysautonomia, medication intolerance, latex allergy, Lyme, or other related nightmares.
4 reviews
August 10, 2018
I appreciate that Dr. Afton, a mast cell disorder specialist, published a thorough book for an underdiagnosed condition; however, the quality of writing was rather poor. I would have appreciated better grammar and syntax and less redundancy and over explanation. I know by trade he's a physician and not a writer; but I've read his research papers, and they are much more eloquent than this book. With all that said, it is currently the most comprehensive book about mast cell activation disorder available.
June 1, 2019
Recommended by my allergist/immunologist. Very informative. Lots of case studies which help you to understand the broad range and highly variable of effects of mast cell activation syndrome (MCAS).
A bit short on treatment options/criteria, maybe because this book was written early in Dr Afrin’s investigations into this disorder. Also I would have liked more information about the biochemical processes that cause the problems described.
Overall a useful book, easy-to-read style, lots of information.
Profile Image for Alison.
126 reviews24 followers
December 27, 2016
I actually found the surplus of case studies the most helpful part about the book because after reading all of them I started to see the patterns he used to identify when mast cell should be suspected. And my own history fits with those patterns to a T.
Profile Image for Jenna Montgomery.
10 reviews2 followers
September 11, 2018
I can’t thank Dr. Afrin enough for this book! It has helped me understand so much more about this disease and why I experience the symptoms that I live with everyday. This is a must read for ALL MCAS patients and ALL physicians.
Profile Image for Jamie Holloway.
523 reviews25 followers
February 11, 2017
Wow, what a great and complete book. I'll be posting my review tomorrow on Jamie Chases Butterflies.
Profile Image for Amy.
48 reviews1 follower
August 3, 2017
one hell of a disorder ive got. Finally, though, some accurate information for patients and hopefully doctors.
Profile Image for C.A. Gray.
Author 24 books456 followers
October 15, 2022
It's hard to rate this book; it probably deserves 5 stars for what it is, it just wasn't what I expected. It was like an absurdly long blog post on Mast Cell Activation Disorder, with a ton of case studies, each showing a different possible symptom. I skipped the case studies (I typically just want the upshot) and skimmed the summary of symptoms, as I've seen a decent amount of MCAS in practice already. It did alert me to some strange symptom connections I hadn't considered in cases that don't present as classic MCAS though, so there are a few pearls I gleaned. I just didn't need a whole book for those.
Profile Image for Erinn Lowe.
3 reviews
April 26, 2022
Very validating and easy to read but also has a great deal of specific diagnostic information. It is essentially a collection of case studies chronicling his trial and error differential/diagnostic process searching for the cause of invisible and debilitating illness(es) in many of his patients. The bibliography is also extremely extensive for practitioners (or anyone) looking for journal articles on MCAS.
Profile Image for Candace.
Author 1 book15 followers
August 15, 2020
This is probably a good and valuable book, but whenever someone poses a kind of unifying theory of everything, I get skeptical. I've struggled with idiopathic anaphylaxis all my life, and I've run a support group for people who have it. So, I'm not unfamiliar with the many kinds of misery mast cells can engender. But I balk at seeing them behind every illness.
Profile Image for Amy Villarreal.
126 reviews
November 13, 2018

Very accessible, well thought out and organized book on MCAS. I gained a lot of insight into my current health issues, and, if nothing else, have been given hope with a clear map of how best to approach the healthcare community concerning my needs.
1 review
May 17, 2020
Very Interesting Book on a little known subject

to read a book that actually understands mast cell activation syndrome and gives very useful advice about its diagnosis and treatment
Profile Image for J.E. Williams.
Author 5 books7 followers
March 21, 2021
Rare insights presented in a balanced and organized manner.

In our era of complex multi-symptom diseases, doctors would do well to take a course on detailed clinical thinking by the author of this book. Second best is to read the book, and then read it again.
11 reviews
August 12, 2018
Amazing book saved my life and led me to answers I'm so grateful

Great theme book and if u think u have mast cell then buy it and get reading lots of great info.
Profile Image for Jennifer.
41 reviews5 followers
February 10, 2019
EXCELLENT book! Total MUST READ for anyone with a mast cell activation disease. This book has stories, research, treatment ideas and more. Perfect for patients and medical professionals.
Displaying 1 - 30 of 42 reviews

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