Lawrence B. Afrin - Never Bet Against Occam - Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity

Never Bet Against Occam:

Mast Cell Activation Disease and the Modern Epidemics of

Chronic Illness and Medical Complexity

Lawrence B. Afrin, M.D.

2016

Library of Congress Cataloging-in-Publication Data

Afrin, M.D., Lawrence, 2016-

Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity / Lawrence B. Afrin, M.D. 1st ed.

p.cm.

Include bibliographical references and indexes

ISBN: 978-0-9973196-1-3 (Softcover)

ISBN: 978-0-9973196-0-6 (Hardcover )

ISBN: 978-0-9973196-3-7 (Digital)

Library of Congress Catalogue Number (LCCN): 2016934971

Copyright 2016 by Sisters Media, LLC

All rights reserved. Except for use in a review, the reproduction or utilization of this work in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including xerography, photocopying, and recording, and in any information storage and retrieval system, is forbidden without the written permission of the publisher.

The author has worked to ensure that all information in this book is accurate as of the time of publication and consistent with standards of good practice in the general management community. As research and practice advance, however, standards may change. It is recommended that readers evaluate the applicability of any recommendations in light of particular situations and changing standards.

The web addresses referenced in this text were current as of February 2016, unless otherwise noted.

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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 authors 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. Afrins 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

Table of Contents

Foreword

They say, Write what you know. Thus, the one book I likely will ever write.

I have no doubt there are many health care providers and scientists who will regard this book as premature, that theres not enough known scientifically yet about mast cell activation disease to warrant a book for the popular press like this.

I feel theyre both right and wrong.

Let me be the first to acknowledge that what we have yet to learn about this subject dwarfs what we have learned already, and some might say we should know more before a book like this is written.

At the same time, I feel the time is ripe for a book like this because, in my opinion, the knowledge we already have is sufficient to help legions more than are presently being helped, if only this knowledge, heretofore confined largely to an obscure corner of medical academia, were spread more widely.

Label me however you wish. Whatever you suspect my motives to be, let me just state here for the record, simply and unequivocally, that, to the best of my awareness, all I ever wanted to do was help my patients (and would-be patients). Thats all.

Let me also make clear that I hold all of my colleagues in the highest regard. At present, the challenges in diagnosing this disease are extraordinary (as Ill discuss), and no health care provider for years to come should be denigrated for not recognizing it or even not believing it exists. I truly believe the vast majority of my colleagues honestly do make the best effort they can at the time for every patient they see, but providing medical care in the early 21 st century, in the U.S. or elsewhere, is an incredibly difficult job. As they say, Walk a mile in my shoes I think it will be a long time yet before the public can reasonably expect the majority of the medical profession to know this disease, but as the reader will come to see, this reality is not anyones fault.

I also apologize in advance to you, dear reader, for my long sentences and frequent parenthetic comments. Hard to change a writing style Ive used for decades.

Finally, let me advise that I will be referring hereafter to health care providers as doctors and nurses. I recognize there are many other types of providers whose understanding of this disease will benefit many patients, but nobody yet has come up with a less cold-blooded term than providers or clinicians, or a smaller mouthful than practitioners, so I beg your understanding that my use of doctors and nurses is simply for the sake of simplicity and warmth and does not imply any thoughts of exclusivity. Also, of course, I have changed the personal information of the patients described herein as needed to protect their identities, but the rest of their cases are faithful descriptions of their presentations and the paths they are taking.

Acknowledgements

First and most important, I could not have learned what is reflected in this book without the unswerving support of my wife, Jill, and mother, Lois. More than once, when the easier path was to head in a different direction, their support helped me stay the course. And I certainly would be remiss in not also thanking my father, Michael. Though he passed long before my career took this new path, I firmly believe my ability to stand my ground in pursuing this path was because I had watched him, too, so consistently stand grounds he knew to be right, no matter the (sometimes great) personal cost. I also appreciate the mature-beyond-their-years manner in which both of my children, Jessica and Michael, have dealt with the challenges my pursuit of this work has brought my family.

I also want to thank my colleagues especially my longstanding mentor, Dr. Robert Stuart, and another stalwart supporter, Dr. Neal Christiansen who were willing to accept new realities when data and results defied expectations. Id also like to thank my earliest mentor, Dr. Ron Schiff, my first supervising attending physician upon my starting the clinical training years in medical school. More than once in that first month on the hematology/oncology inpatient service in my junior year, I watched in awe as Dr. Schiff refused to give up on desperately ill patients, blending his almost obsessively thorough reviews of patients cases with scourings of old and new medical literature and his own out-of-the-box creativity to devise innovative approaches that, more often than not, made the key difference for his patients well-being and even their very survival. Thats the type of doctor I wanted to become, and it is my hope that if Dr. Schiff sees this, he will know that at least one of his students took his lessons to heart.