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.