Hey everyone,

So, in a nutshell, this is really the main post of “what I wish someone had told me.”

If you have mast cell issues, it doesn’t necessarily have to be as bad as you may think it is at first.

I do want to be sensitive in writing this post as I know there are different types of mast cell issues, each with different causes, treatments, and progressions. They aren’t all the same, and I don’t want to sound as though I’m making light of anyone’s struggles.

However, I do really want to share the perspective I have now, because it would have made all of this a lot easier to go through at the time.

The mast cell symptoms you have currently can be a snapshot of where you are at this moment in time– they do not always have to be this way.

The type of mast cell activation I’m recovering from is called secondary mast cell activation. This name reflects the fact that the condition is triggered by another event in the body, such as a virus or a trauma, which causes the mast cells to respond.

According to Dr. Castells, with secondary mast cell activation, when you change that initial triggering event, you are basically taking away the reason for the mast cells to be acting that way. So over time, if you heal what’s happening “underneath,” as she put it, you can have the mast cells return to their normal baseline of activity.

I wish I known this much, much sooner.

I try not to dwell on the negative parts of my story, but the first few medical professionals who told about mast cell issues did not tell me they could potentially get better. I really suffered needlessly because of this.

I am fortunate in that I got the type of MCAS that is most commonly considered to be able to go into remission. And that is going to be the main focus of my blog, as it’s what I experienced personally.

There are many other cases where people living with mast cell activation managed to go into remission. For example, there is Jeff, who experienced MCAS following a viral infection that caused damage to the connective tissue in his neck. Once he healed his neck injury, his MCAS went into remission.

There are also many other examples of people who healed from MCAS using the Dynamic Neural Retraining System, which I discuss further in other posts.

In addition, there have been cases where people with other types of mast cell issues were able to improve their lives.

The fact that healing was possible first started to dawn on me when I attended the Oct. 2018 meeting of the Mast Cell Northeast support group.

There, I heard stories of people with mastocytosis, which is another mast cell disorder which is not generally thought of as being something you can recover from. However, several of the people I met at the meeting had essentially regained their ability to practically “normal” lives.

Obviously, people’s individual stories from the meeting are confidential, so I cannot share them here. But I was amazed to hear multiple stories of people who’d really learned how to make lifestyle changes and avoid certain triggers, and who saw things got a lot better.

One story which I can tell you is the story Dr. Castells shared with Yasmina of Healing Histamine. It’s the story of a patient with mastocytosis who was so determined to live a normal life that she actually stopped her treatment and made dramatic lifestyle changes. She came back to Dr. Castells years later, much happier and with her symptoms in remission.

I asked Dr. Castells about this story myself, at an appointment. Not only did she confirm it was true, she actually went onto say that this patient was far from the only one to make this sort of recovery.

The point of this post is not to minimize mast cell issues, or to imply there’s something wrong with you if you can’t handle your symptoms in a certain way.

(If that’s how it sounds, please do feel free to drop me a line, because I really want to get my messaging right here).

But I want to let you know that sometimes, mast cell issues can get better. And it’s important to me to share this, because I don’t want you to get caught in the downward spiral that I once was.

How does this happen?

Obviously, we need way more research to really know. But in all my reading and talking to different people, I’ve come up with two main theories.

1) Reducing mast cells’ inflammatory activity

In her interview, Dr. Castells explains how lifestyle changes, such as including nutrient-rich foods in the diet and making sure to exercise regularly can help to reduce the inflammation present with mast cell disorders.

2) Changing what the brain is doing

As both of my doctors, Dr. Castells and Dr. Bayuk, told me — the nervous system and the immune system are incredibly intertwined. In fact, some researchers don’t really consider them to be separate at all– instead, they are part of the same system.

It sounds so hard to believe, but both of my doctors have seen people make incredible recoveries — and now I’m about 85% recovered myself– largely through healing the brain.

The Dynamic Neural Retraining System is an amazing example of this, although it’s certainly not the only way.

I’ve got so much more to say about this in future posts– stay tuned!