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Dr. Afrin, MCAD book release (Read 8440 times)
Julie M.
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Dr. Afrin, MCAD book release
04/26/16 at 02:11:14
 
Hello all,

I didn't see any posts regarding the recent publication of Dr. Afrin's book on "Mast Cell Activation Disease" so I wanted to mention it in case others are interested. (Apologies if this has already been cited on the forum.)

As a former patient (he dxed me in 2012) of Dr. Afrin's I have tried to keep up with his MC publications, but I completely missed the release of his book, "Never Bet Against Occam"; "Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity".  I stumbled upon it on social media last month and purchased a copy from Amazon.

Here's the Amazon link for the book if you are interested:
http://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615

He covers a lot of material via patient case studies, including the many systems (GI, cardivascular, pulmonary, etc.) that can be affected by MCAD, diagnostic criteria, definition of medical terms found within MCAD cases, possible future directions, etc.  You might be able to find the table of contents on Amazon or some other book selling site to help you decide if the book is right for you.

Just wanted to pass this along, in case others may find it helpful.

Wishing you a symptom free day!

Julie

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CindyP
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Re: Dr. Afrin, MCAD book release
Reply #1 - 04/28/16 at 03:28:43
 
Thanks so much for letting us know about this book!  With all my digging on the internet, I still hadn't come across this.  I think this will be a great resource to use, both for myself and my doctors.  I've just ordered it from Amazon and can't wait to read it.  I've got my highlighter ready!  (Can't read without a highlighter  Roll Eyes)

I had been a little discouraged that this forum isn't more active.  But I've come to appreciate that the quality of the posts more than make up for it.  I daily read something from old posts and continue to get valuable information.  

Thanks Julie!
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Joan
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Re: Dr. Afrin, MCAD book release
Reply #2 - 04/30/16 at 17:53:27
 
Yes, thanks for posting that!
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peter
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Re: Dr. Afrin, MCAD book release
Reply #3 - 05/02/16 at 17:12:41
 
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Joan
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Re: Dr. Afrin, MCAD book release
Reply #4 - 05/02/16 at 18:59:34
 
Thanks, Peter!  That's a pretty comprehensive article!  I've been using curcumin (standardized turmeric extract combined with bromelain) for almost 2 years for pain, and it has been almost a miracle for me.  I have very few days of any pain, and it's very tolerable, when it used to be terrible. Of course, it contain salicylates, so not everyone can take it.
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peter
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Re: Dr. Afrin, MCAD book release
Reply #5 - 05/04/16 at 10:05:12
 
hi joan iam doing well to my Tryptase is down to 22 lowest ever i gess the immune system is settling down now for the brain thing well i gess thats hear to stay
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CindyP
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Re: Dr. Afrin, MCAD book release
Reply #6 - 05/10/16 at 03:53:23
 
For anyone that hasn't been diagnosed yet, Dr. Afrin's book is a must-read!  I'm finding so much information that I can use.  It's making sense of every odd piece of my medical history.  I feel much better equipped to speak confidently to my doctors about MCAS.  I have better understanding from a doctor's perspective of why it's so difficult to recognize, diagnose and treat.  It's still frustrating, but having this understanding helps me be a bit more patient, and yet encourages persistent determination.

Thanks again, Julie, for making me aware of this valuable resource!
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peter
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Re: Dr. Afrin, MCAD book release
Reply #7 - 05/10/16 at 10:32:15
 
from a doctor's perspective of why
cindyp your words ring a bell its time the medical people deal with the what as there will never be a consensus as to [why]
The information and understanding of the [what] is the best treatment
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Julie M.
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Re: Dr. Afrin, MCAD book release
Reply #8 - 05/23/16 at 05:40:04
 
So glad you found it to be a valuable resource Cindy!  Even though I already carry an MCAS diagnsis, I too have found it really helpful.

I took the book with me when I went to see my gastroenterologist recently.  I have been having symptoms similar to pancreatitis for years on end.  But, it's never the kind of "stop you in your tracks" type of pain associated with acute pancreatitis or the  highly elevated pancreatic enzymes. that occur during pancreatitis episodes.  It's just a chronic aching pain/stinging that waxes and wanes with moderately elevated lipase levels.  (Amylase is always normal)

Dr. Afrin describes in his book a "subclinical" type of pancreatitis that he has seen in a few MCAS patients.  My presentation mirrors exactly what he describes in the book.  I shared this with my gastro (actually showing him the passage from the book) and he for the first time ever, said it was "likely" that my pancreas issues are connected to my mast cell issues.  I have discussed this possibility with him for years and he has been resistant to drawing that conclusion.  But, I think with my symptoms/test results so closely matching what Dr. Afrin described in the book, my gastro had "evidence" that these two (mast cell activation and pancreatitis) issues may actually be connected.  It was a pretty big breakthrough!  (I should note that my gastro has put me through every test known to man to rule out other causes for the elevated enzyme levels and pain.)

I've worked with this gastro for many years and have a very good relationship with him, which allowed me to feel comfortable sharing Dr. Afrin's book with him.  There are many doctors I've seen over the years who I likely wouldn't do the same because I wouldn't feel they would be receptive.  Nonetheless it has already proved to be a valuable resource, in ways that I hadn't expected.

Glad you found it helpful Cindy...I definitely share that sentiment!

Best to all,

Julie
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CindyP
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Re: Dr. Afrin, MCAD book release
Reply #9 - 05/24/16 at 06:27:13
 
Wow, Julie!  You seem to be a classic example of Occam's Razor!  You knew that it was much more likely for the pancreatic issues to be related to MCAS than for it to be a totally separate matter.  I'm so glad you've had that breakthrough with your gastro doc!  I hope to hear next that recognizing this leads to better treatment of your MCAS and control of your painful symptoms.  

I understand that you wouldn't pull out Dr. Afrin's book at just any doctor appointment.  Although, after reading it that's exactly what I want to do!  I'm glad you've got at least one doctor who is reasonable and willing to listen.  I'm hoping I've found a doctor like that, too.  I've just written a letter to my allergist in hopes that he will reconsider his original suspicion of NO MCAS.  After reading Dr. Afrin's book, I felt much better equipped to make this request.  (My husband said the letter reminded him of Princess Leia saying, "Help me Obiwan.  You're my only hope.")  Roll Eyes

Knowing that Allergist use different diagnostic criteria than Hematologist/Oncologist helped me understand why the allergist would stop looking after a normal tryptase test.  The criteria used by Hematologist has a wider spectrum of symptoms, too.  The website referenced in the book led me to the patient history questionnaire.  By that standard I definitely would merit further testing.  

Out of curiosity, what type of doctor diagnosed your MCAS?

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Julie M.
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Re: Dr. Afrin, MCAD book release
Reply #10 - 06/02/16 at 10:05:04
 
Hi Cindy,

I don't blame you a bit for taking that book with you to appointments!  I would have done the same thing early on when trying to get "anyone" in the medical community to listen to me!

I had a somewhat roundabout way of getting my diagnosis.  I had always been that person with a ton of allergies and weird reactions to things.  I just chalked it up to severe allergies.  But, in 2007 I broke out into hives body wide and just couldn't get them to clear up even with steroid use.  It took several weeks for them to completely resolve.

A few months later I started having severe nausea all the time.  It was what I called "stop you in your tracks" nausea.  Then after 2 to 3 months of the nausea, the lower GI issues started with a vengeance.  My rheumie who I had seen for years (I carried a diagnosis of mixed connective tissue disorder...which he now knows is MCAS) ran some tests and one came back for an autoimmune GI issue, so he referred me to a gastroenterologist.

The gastro is/was awesome!  He performed a colonoscopy among many other tests.  Even though my GI tissue looked normal during the procedure he had it stained for mast cells.  Sure enough, my biopsy came back with elevated mast cells in my gut and I was diagnosed with mastocytic enterocolitis.  This was my introduction to mast cells.

If I only had symptoms in my gut, I wouldn't have looked any further.  But, I had so many systems involved (itching...all the time, hives, wheezing, bladder spasms, vertigo, reacting to food, burning mouth, joint inflammation, etc.) I began to get suspicious that something systemic was going on.  

Given my systemic symptoms, I ended up seeing several allergists here in the DC/Baltimore area and none at the time were on board with MCAS.  I had found this forum however, and I believed that I was dealing with some type of systemic mast cell issue given what I was learning.  I persisted with one of the allergists and when my 24 hour urine methylhistamine came back significantly elevated I knew I was on the right track.

With the help of those on this forum and the small but growing body of literature on MCAS, I decided to pursue getting a formal diagnosis.  At the time Dr. Afrin was still at MUSC so I made an appointment to go see him.  I was pretty well convinced at that point that I had MCAS but seeing him gave me my official diagnosis.

So, there you go...it took "a village" to get the diagnosis.  But I really credit my gastro in getting me on the right track.  Had he not been knowledgeable about mast cell issues in the gut (which was pretty new at that time) I may still be searching for a diagnosis.  

I hope you found some success in reaching out to your allergist.  There is nothing easy about getting an accurate diagnosis when it comes to MCAS.  As Dr. Afrin always says, "patience and perseverance".

Keep us updated!

Best,

Julie
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CindyP
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Re: Dr. Afrin, MCAD book release
Reply #11 - 08/19/16 at 08:37:36
 
This is a presentation by Dr. Afrin.  It basically summarizes his book, so I thought I'd add the link to this discussion.

https://www.youtube.com/watch?v=82dmZhCBuBo

He also includes a q&a at the end that helped answer a few questions beyond what the book covered.
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