In summary:
I recommend learning a bit about mast cells before reading this book. I've researched MCAS for years, so I was comfortable digesting all of this information at once. If you believe you have a mast cell disorder and there's more of an allergic component to your symptoms, this book might throw you off a little. Dr. Afrin is actually a hematologist, not an allergist. The case studies he discusses are very unique to his field, but I still find them relatable; they're also a great testament to the complexity and vastness of mast cell dysfunction. If you're overwhelmed by 30 chapters, I recommend at least reading the foreword, Chpts. 4-6, Chpt. 18, & Chpts. 23-28.
Edit:
Yay! I finished the book (which is a miracle in itself- no lie). Reading & retaining information has been a struggle for as long as I can remember but became an even more glaring issue when I got sick in 2011. I am, however, still thumbing through the appendix. One obvious oversight I've found is that 'Cromolyn Sodium' (aka Gastrocrom in its oral form) is not described in the appendix. I was only disappointed because I wanted to hear Dr. Afrin's thoughts on it. Though, one thing I did learn in Chpt. 25 is that scientists aren't entirely sure how Cromolyn works to target mast cells; in fact, some believe that it doesn't target mast cells, but rather nerve cells. Lastly, my mom (who has fibromyalgia, etc) and my aunt (who has CFS and hypothyroidism) were both recently diagnosed with hyperparathyroidism. My aunt had a parathyroidectomy and though it's been about a year since the surgery, she doesn't feel any better. My mom has not had the surgery and I don't think she intends to as long as her vitamin levels and bone density test continue to look 'good'. After reading Dr. Afrin's book I'm starting to wonder if there's a mast cell component to my family's presentation of hyperparathyroidism. I was actually tested before my aunt and mom because an ENT recommended I look into hyperparathyroidism after my lip biopsy came back negative for Sjogren's; however, my PTH lab came back in the normal range. So many questions. I hope Dr. Afrin finds time to write a supplement to this book, but I totally understand if that's not where his focus is right now.
Original Review:
I've been trying to stray away from reading medical literature 1. Because after more than a decade of relentless symptoms and research I'm honestly just tired of it, and 2. Because what we focus on is what we get. In my defense, though, chronic illness isn't something you can simply ignore away. I know I have many skeptics, and hell, what these skeptics might not know is that I'm a skeptic, too. When I purchased this book I hoped it would give me some peace of mind, and restore confidence in my diagnosis (i.e. Was it prematurely diagnosed?, etc). I'm just 30 pages in and already the first case study reminds me so much of my own weird and prolonged medical journey. I could feel years of doubt and degrading messages from doctors melting away. The most important person to trust and validate is yourself. But it's also okay to receive validation from those that truly understand what you're dealing with- Lawrence Afrin is obviously one of those people and lucky for us, the chronic illness community, he's also a well-respected doctor. With that said, though, I'm grateful for the compassionate doctors that I've found locally and I'm becoming more forgiving of the doctors that aren't capable of listening without judgement. I hope by the last 30 pages of this book I will still feel the same enthusiasm as I have in the first 30 pages. I find myself wishing I could see Dr. Afrin but also remind myself that I can self-advocate and utilize my current Allergist to request the helpful lab work mentioned (much of which I've already requested from doctors over the years) throughout this book. I appreciate the honesty, compassion, determination, and vulnerability that Dr. Afrin displays throughout his book. I feel less shame and more pride in my journey after flipping through page after page and highlighting all the similarities that could be drawn from my own experience with multisystem symptoms. One thing that sticks out most is the relentless and incredibly intense feeling of being revved up x100 (it's like your foot being stuck on the accelerator and your car finding a new way to fuel itself even long after the gas has run out). I've yet to find anything to calm that symptom and honestly have no idea how I've managed to push through the absolute torture for years. It's a hell of a lot more physiological than it is psychological and that's really difficult to get anyone to understand. I've lived with anxiety (stress) since childhood due to an unsafe living environment and believe me anxiety is a piece of cake compared to this. I'm one of those people that won't refuse psychological treatment because I don't care what you call my symptoms, all I want is relief from them. I do believe, though, that trauma and prolonged stress is more likely to trigger illness but it's very obvious to me that there's some genetic involvement too. I have a sick family. And I believe I'm sicker because of a perfect storm. Getting hospitalized with sepsis in 2011 was definitely my tipping point. Thank you, Dr. Afrin, for sharing your experience and taking the time to advocate for patients essentially all over the world. #drafrinforthewin #neverbetagainstoccam #mcas
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity 1st Edition
by
Lawrence B. Afrin M.D.
(Author),
Kendra Neilsen Myles
(Editor),
Kristi Posival
(Illustrator)
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ISBN-13: 978-0997319613
ISBN-10: 0997319615
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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.
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Editorial Reviews
Review
A long overdue book competently written by one of the worldwide leading hematologists in the field of systemic mast cell diseases. In addition to the current state of knowledge about systemic mast cell activation disease, the author vividly illustrates a selection of possible clinical phenotypes of this disease by means of patient cases, emphasizing the many pitfalls in diagnosis and therapy. The book is an absolute must for all physicians (the frequency of systemic mast cell activation disease in the population amounts to about 10%) and affected patients. The author s brilliant style of writing makes reading a pleasure. --GERHARD J. MOLDERINGS, M.D., Associate Professor of Pharmacology and Toxicology, Molecular Geneticist, Mast Cell Immunologist, University Hospital of Bonn, Germany
Dr. Afrin's case studies illustrate how a single underlying disease process can explain a multitude of seemingly unrelated symptoms. This discovery has the potential to unlock some of the most perplexing medical mysteries of our time. His treatment protocols have ended years of patient suffering and offer much needed hope to the chronic illness community. --JENNIFER ROBIN KULIK, Founder, Mast Movement
Dr. Afrin's case studies illustrate how a single underlying disease process can explain a multitude of seemingly unrelated symptoms. This discovery has the potential to unlock some of the most perplexing medical mysteries of our time. His treatment protocols have ended years of patient suffering and offer much needed hope to the chronic illness community. --JENNIFER ROBIN KULIK, Founder, Mast Movement
About the Author
Dr. Afrin earned a B.S. in computer science at Clemson University in 1984 and then an M.D. at the Medical University of South Carolina (MUSC) in 1988, where he also pursued internal medicine residency and hematology/oncology clinical and research fellowships. While on faculty at MUSC from 1995-2014, he was active in undergraduate and graduate medical education, educational and information technology administration, and practice and research in hematology/oncology and medical informatics. Since the mid- 00s, his clinical work has increasingly focused in hematology, especially mast cell disease. He joined the University of Minnesota in 2014 to further his interests in this area. He has an extensive record of peer-reviewed publications and has spoken widely in his areas of interest.
Product details
- Publisher : Sisters Media, LLC; 1st edition (March 15, 2016)
- Language : English
- Paperback : 470 pages
- ISBN-10 : 0997319615
- ISBN-13 : 978-0997319613
- Item Weight : 1.79 pounds
- Dimensions : 7 x 1.06 x 10 inches
- Best Sellers Rank: #27,888 in Books (See Top 100 in Books)
- #2 in Diseases
- #122 in Medical Diseases (Books)
- Customer Reviews:
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4.7 out of 5 stars
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I have heard it for most of my 50 years. "You are puny." "Why can't you ever pass up a virus or "bug"?" "It is impossible to be allergic to that! No one is allergic to that!" "You just need to eat better and exercise!" Wrong. Wrong. Wrong. God Bless Dr. Afrin for not only confirming that there really is a reason behind my complicated medical history but for having a plan to deal with the complexities of Mast Cell Activation Syndrome. As a person, Dr. Afrin is without a doubt, one of the kindest, gentlest and most compassionate souls I have yet to meet. The book is fantastic as a medical resource for my regular phycians and also for me, the patient. I bought copies for the other doctors I see, egos be damned! I handed each doctor their book and said, "This is me." What a wonderful feeling! This is ME and this is how we are going to get me to the best me I can be!
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Reviewed in the United States 🇺🇸 on August 7, 2019
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5.0 out of 5 stars
BEST book ever written on MCAS by national specialist Dr. Afrin. I have bought 4 for my doctors.
Reviewed in the United States 🇺🇸 on September 15, 2022
This book is filled with information about MCAS, which condition is rarely known by doctors (even immunolgists etc..) becasue it was finally declared an inflammatory condition in 2018. The book is also very legible because the second part gives medical definitions. Also, if you have MCAS, please go on Reddit .com and find your support group. It is an isolating condition and difficult to master. This community is full of interesting ressourses and ideas.
Reviewed in the United States 🇺🇸 on July 11, 2020
I cannot thank Dr. Afrin enough for writing this book. I have been suffering from chronic pain and fatigue as far back as I can remember. In my 20’s, the weird infections started, mostly sinus. In my early 30’s, I resorted to infertility treatments to have my children. And by 35, I was no longer able to work from chronic pain and fatigue, and was determined permanently disabled.
For 13 years, I’ve jumped from doctor to doctor looking for a diagnosis and some form of hope. Symptoms waxed and waived. Some days, I couldn’t get out of bed. Other days, I found myself not being able to complete a sentence due to problems with word recall. Almost every doctor I saw, even specialists, came back to me with the same report. Your tests were normal. Or your tests were just slightly abnormal, but not enough to validate the level of your symptoms. Or, my favorite, “we found a rare autoimmune disease marker in your blood. It likely means nothing, we need to run more tests.”
I’ve jumped around from rheumatologists to hematologists to neurologist. I’ve had 3 spine surgeries, a hysterectomy, a nerve biopsy, 2 bone marrow biopsies, a PET scan, a bladder function test, too many MRI’s and ECG’s to count. I’ve done IVIG transfusions, and steroid injections in just about every place you can think of. The elbow shots hurt the worst. I’ve had myleograms and CT’s. I’ve left the ER in tears more times than I care to remember, after being told everything checks out, you are not having an allergy attack/shingles flare/stroke/migraine. “Take this valium for anxiety.”
And then one day in January of 2020, I ate a hard-boiled egg, like I had every day for the past year for breakfast. Except this time, my throat closed up.
The allergist on-call when I asked for an epi pen told me to “just be happy” and all my symptoms would get better.
I thank God every day that I stumbled across MCAS and Dr. Afrin (and this book!) while reading a forum about a co-existing condition that my daughter has called POTS. Had I not, had Dr. Afrin not written this book, I would probably not still be here to write this review.
I still can’t find a doctor in my state to treat me (well I found one with a 10 month wait-list). Due to some luck, I will be seeing the good Dr. Afrin in about 12 weeks, traveling across a couple states with my husband. I can’t wait to meet my hero!
For 13 years, I’ve jumped from doctor to doctor looking for a diagnosis and some form of hope. Symptoms waxed and waived. Some days, I couldn’t get out of bed. Other days, I found myself not being able to complete a sentence due to problems with word recall. Almost every doctor I saw, even specialists, came back to me with the same report. Your tests were normal. Or your tests were just slightly abnormal, but not enough to validate the level of your symptoms. Or, my favorite, “we found a rare autoimmune disease marker in your blood. It likely means nothing, we need to run more tests.”
I’ve jumped around from rheumatologists to hematologists to neurologist. I’ve had 3 spine surgeries, a hysterectomy, a nerve biopsy, 2 bone marrow biopsies, a PET scan, a bladder function test, too many MRI’s and ECG’s to count. I’ve done IVIG transfusions, and steroid injections in just about every place you can think of. The elbow shots hurt the worst. I’ve had myleograms and CT’s. I’ve left the ER in tears more times than I care to remember, after being told everything checks out, you are not having an allergy attack/shingles flare/stroke/migraine. “Take this valium for anxiety.”
And then one day in January of 2020, I ate a hard-boiled egg, like I had every day for the past year for breakfast. Except this time, my throat closed up.
The allergist on-call when I asked for an epi pen told me to “just be happy” and all my symptoms would get better.
I thank God every day that I stumbled across MCAS and Dr. Afrin (and this book!) while reading a forum about a co-existing condition that my daughter has called POTS. Had I not, had Dr. Afrin not written this book, I would probably not still be here to write this review.
I still can’t find a doctor in my state to treat me (well I found one with a 10 month wait-list). Due to some luck, I will be seeing the good Dr. Afrin in about 12 weeks, traveling across a couple states with my husband. I can’t wait to meet my hero!
24 people found this helpful
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Vee
2.0 out of 5 stars
Not what I was looking for
Reviewed in the United Kingdom 🇬🇧 on October 1, 2021
I expected a professional book with citations of scientific papers, along the lines of Dr Michael Greger's How Not To Die / Diet books, but there were no references at all. There was no index. I hoped for a table of histamine rich foods to avoid and safe foods - but - you guessed it: there wasn't one. Too much waffle ... too slow to get to the point. There are a few pages on treatment, but I learned more from listening to an interview with Dr Tina Peers. Dr Afrin seems like a nice guy, but he really should have engaged a scientific editor to help him present his work, and another person to format the book for him.
2 people found this helpful
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Tamsyn
5.0 out of 5 stars
Excellent!
Reviewed in the United Kingdom 🇬🇧 on September 10, 2017
Truly excellent book, if you expect MCAS or are diagnosed, though this is not the "usual" style of a book (about half of it is a glossary, which I found HUGELY helpful) and the majority is case-studies and Dr. Afrin going through the process he went through with those patients, their history etc. The only thing I'm a teeny bit disappointed about is the slightly lacking coverage regarding environmental sensitivities (chemical sensitivity, pollen yada yada) and food allergies. It taught me a huge amount regardless and I guess usually the focus is on those prior mentioned issues with MCAS so Dr. Afrin wanted to focus on the wide range of symptoms not covered usually with MCAS. Would really recommend if you suspect MCAS or have been diagnosed, if only because it'll help you feel more understood :).
6 people found this helpful
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Mrs. Margaret A. Golby
5.0 out of 5 stars
I bought this book after seeing a TV series about ...
Reviewed in the United Kingdom 🇬🇧 on April 26, 2017
I bought this book after seeing a TV series about people who have unusual medical conditions. The author of this book gives hope to so many people .... about one sixth of the population in fact who may very well have Mast Cell Activation Disease/syndrome. I'm one out of six people who probably has this condition. Not exactly bed-time reading but well worth the money and time it took. yes not all of the medicines or medical conditions I'm familiar with but I am quite capable of researching them for myself. Do I have any of the listed ailments ( pains in the neck actually ) well I have to say yes I have too many of them for my liking. A cure isn't going to be made for many years but this book gives hope.
7 people found this helpful
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Sarah
5.0 out of 5 stars
... think where we MCAS sufferers would be without this great doctor. My life has been turned upside down ...
Reviewed in the United Kingdom 🇬🇧 on June 6, 2017
I dread to think where we MCAS sufferers would be without this great doctor. My life has been turned upside down and inside out by this disease. Yet the worst part of it was not the physical suffering, but the fact that so many doctors did not believe me and dismissed my symptoms as 'anxiety'.
Dr Afrin is ensuring, with this well-written, easy to read book, not just that patients can recognise MCAS in themselves, but that doctors and medical professionals all around the world can diagnose this disease, once thought of as rare, but sadly proving to be all too common. Thank you Dr Afrin for this book, and for all the work you do on our behalf in raising awareness. .
Dr Afrin is ensuring, with this well-written, easy to read book, not just that patients can recognise MCAS in themselves, but that doctors and medical professionals all around the world can diagnose this disease, once thought of as rare, but sadly proving to be all too common. Thank you Dr Afrin for this book, and for all the work you do on our behalf in raising awareness. .
8 people found this helpful
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Sam Bruce
1.0 out of 5 stars
ok,not great.
Reviewed in the United Kingdom 🇬🇧 on August 12, 2017
ok book not as good as expected. there are better forms of information online about mass cell disease. i wished i had looked there first and not bought this book. it's a book mostly filled with patient cases and it just repeats itself. could be worth getting if you want something to show your doctor.
8 people found this helpful
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