MCAS Series -#2- What Is Mast Cell Activation Syndrome?

MCAS Series -#2- What Is Mast Cell Activation Syndrome?


Heyo It’s Mayo! Happy Lyme disease
Awareness Month! I’ve got my green on today reppin’ for my Lyme warriors. Last year I did a video series on Lyme disease awareness and if
you haven’t seen that I highly recommend it. I will link it below. Since I already
did that last year, my contribution for Lyme disease
awareness month this year is a series on mast cell activation syndrome. No, it is
not Lyme disease, but I’m a person who had chronic Lyme and then I developed
mast cell activation. I also have a friend who tragically just passed away from Lyme
disease and mast cell activation. It’s a series that’s very near and dear to me
and I would love to spread more awareness for this disease. Also, if you
haven’t already seen the first video of this series I recommend it. I will link
it below or if you have already seen it, thanks for being here and tuning in for
video number 2! This whole month of May every Monday I’m gonna be posting videos
for this mast cell activation series and I would love it if you follow along.
Today’s video is just on what is mast cell activation. This video is made from
frequently asked questions I get from everybody about what is mast cell, what are
mast cells, how did you treat it, what do they release? yada yada yada… So
I took all of those frequently asked questions I get all the time and I
turned it into this video. This is just gonna give you some basic information
about what is mast cell activation and hopefully it will help you understand my illness a little better. Obviously I’m not a doctor
nor an expert, so don’t just take my word for things. If you want to know more
information about mast cell activation I will leave lots of links below. My series is
also following along with my mom’s blog series she’s doing for LymeDisease.org.
She’s a science writer for thump Her expertise is much more in science and
mine is much more about personal experience, so if you want to know more
science read her blog series. It’s great. And then uh…that’s it! I’m gonna jump right into it!
The most common question I get asked by people is “what is mast cell activation
syndrome?” Which is a great question! I didn’t know before we found out I had it.
I’d never heard of it before. There are two types of mast cell diseases.
Number one is mastocytosis which is a genetic mutation where you have too many
mast cells. Number two is mast cell activation
syndrome. Where you have overactive mast cells, but not too many. I have mast cell
activation syndrome. My muscles are overactive and so since that’s what I
have that’s what I’m going to talk about. Usually after that, people ask me “what
are mast cells? I don’t know what those are.” Mast cells create barriers throughout the
whole body and they’re our first defense against foreign intruders. So a foreign
intruder would enter the body, the mast cells would react, they would release
chemicals, and the rest of the body would know how to function or react to that.
There are mast cells in skin, in your organs, in the brain, they’re everywhere. A
cool fun fact about mast cells is they’re actually a primitive line of
defense we’ve had since ancient times. It’s how our bodies used to be able to
survive in super dirty or crazy conditions, which makes a lot of sense.
It’s pretty cool too. So now we know what mass cells are, we know that they react
to foreign intruders and release chemicals, but what kind of chemicals do
they release? There’s a huge list of chemicals that they can release. I will
list two examples that I think are common and people will recognize them:
serotonin and histamine. Serotonin is a neurotransmitter that regulates things
such as mood, behavior, sexual desire, food digestion, addiction, sleep, memory, memory
loss, appetite, motivation, all sorts of things! The list goes on and on really.
Histamine is also a neurotransmitter and it regulates things such as the brain,
gut, spinal cord, and uterus. However, I think most people recognize histamine as
something that’s released when you have an allergic reaction or an injury. For me,
with my overactive mast cells, they release too much histamine and so that is what I
will talk about most. I will say though that not everyone who
has histamine intolerance has mast cell activation, and not everyone with mast cell
activation has histamine intolerance. There are all different types of
chemicals that mast cells can release and so therefore there are all different
types of ways you can be affected by mass cell. So, I highly recommend you
doing more research and being more aware about it because it’s very vast and you
could be affected in so many different ways by this disease. Another thing
people ask me a lot is “what happens to you when you have too much histamine is
released” and that is a long answer. I’m going to talk about that more in my next
video. My next video is gonna be my story. In short though, I started having
allergic reactions to literally everything in my life. Suddenly just had
anaphylactic reactions to everything. The crappy and scary thing with histamine is
that itself can trigger the mast cells. So for example, something enters your
body the mast cells identify it as something that you’re allergic to so it
releases histamine. The histamine therefore triggers more mast cells, and
the mast cells trigger more histamine and it becomes a vicious cycle.
Anaphylaxis is also another reaction very similar to that and it too can
trigger more mast cells and more histamine. Anaphylaxis is a massive
release of histamine and so therefore it could be a massive trigger for mast cell.
Both can be very vicious cycles that can snowball really quickly and we think
that’s why I declined so quickly and so rapidly. It was very dramatic and like I
said, I will tell lots more about that in my next video. People commonly asked me
how I got diagnosed and is there a test for mast cell activation. Like I said, I will
tell more about how I was diagnosed in my next video. But there is a test for
mast cell, however it is not very accurate. Sadly. Um. Most doctors will want to test
you though and get some key markers before they proceed r eally deeply into
your health, which is reasonable. The key is to just find good doctors who will
work with you and help you. That’s my best advice.
Because I’ve gotten so much better within just one and a half years of
treatment, a lot of people ask me “What did you do? How did you treat it?” Well I’m
gonna go into a lot more depth about that in video number four of this series.
I’m gonna share all the ways that we turned my life around and started
healing my body. It’s been a very lengthy process. Since I had histamine issues I
was put on an antihistamine. So, something cool to share with
antihistamines though is that they don’t lower the level of histamine in your
body. They actually just reduce your reaction so an antihistamine is
chemically made to look like a histamine. When the mast cell is going around looking
for histamine to bind to. The antihistamine comes up to the mast cell
and binds to it and blocks the histamine receptor. So then when a histamine comes
along it can’t bind to it because there’s already an antihistamine there.
You still have the same number of mast cells and histamine, but the
antihistamines are just kind of blocking the reaction. The only ways to actually
lower the histamine level in your body is to reduce the level of histamine
you’re putting on and in your body or to go a longer amount of time without
having an allergic reaction. For me I had to do both because I was in an extremely
poor health position. The longer you go without having an allergic reaction or
with lower histamine levels the more you’re lowering your histamine and the
more you’re training your body to stay calm.
Three months is a great goal. If you can make it three months without an allergic
reaction and with lower histamine levels in your body. Great! You’re retraining
your body to stay calm. And then of course, in seven years you’ll have all
new cells in your body so if you can make it to that essentially you could
completely retrain your whole body in seven years. Theories haha. We have a really
long term health plan for me but that’s what works for me and what works for you
may be completely different. This whole series
and especially this video is just frequently asked questions and things
people want to know and people things ask about my health, and hopefully in
sharing I can spread some education, some awareness, and be a voice for other
people who have things that I have. And that’s today’s video! Next Monday, my next
video is going to be about my personal story and the ways that mast cell has
affected me. I’m also going to talk about my friend who passed away because we had
a lot of parallels in our stories, and very tragically different endings. That
will be video number three of this series. Video number four, like I said, is
going to be sharing the ways that we turned my life around and the way that
we have healed my health. Video number five of the series, and the last video of
this series, it’s going to be hints and clues that looking back into my health
history we saw that I always had mast cell issues. Depending on how this series
is received, how many questions I get, and if people want to know more, then I may
add more videos to this series. I could branch off on something if people want
to know more. So please leave comments or questions. If you have anything you want
to say or ask, just leave it below. You can also find me on social media and
reach out. Instagram is probably the fastest way to get ahold of me but I
will link all of my social medias in the description box below. Give the video a
like if you liked it, subscribe wherever that button is, if you want to
come back for more. Thank you so much for watching this video and for following
along with my series and things that I talk about. This series is very close to
me and I really appreciate anyone taking the time to just learn. Please share too!
Never forget that awareness and knowledge are these priceless tools we
have in life that could save us or save others. We can make such a difference
just by having more knowledge and awareness. So please share! My belief is
that if I learn something, then chances are someone else will too. If I
appreciate it someone else will too. So if you learned something today or you
appreciated some part of this video, please share because chances are someone else will too. Thank you so much for watching! That’s today’s video I will be back next Monday
with my next video and next part of this series. Thanks for watching.
Come back soon. Happy Lyme disease Awareness Month! Classic Mayo…Ha! I’m in a rollie chair today and I’m really enjoying it *screech* hahaha

10 comments

  1. Hi, My name is Gabby and I have MCAS and you helped me a lot, My “numbers” have gone up to 17 and it could lead to cancer… sometimes it’s really hard for me, When ever I watch your videos it makes me a lot happier because I know I’m not alone. Because of the disorder is rare It’s hard for people to understand what it’s like. I have kept this a secret from my friends for as long as I new them. But anyways Thank you!

  2. Now I have a better understanding, thank you…a girl from high school who I now have become friends with has all the above (and I thought my life was hard) shes been in the hospital almost all year long. but hearing that theres a possibility to tame it eases my mind for her. I believe theres a cure for everything………..just gotta figure ou how to get there

  3. also please make more videos on this as you explain things very well and in a non complex way, and your presentation is great

  4. Great series of videos on MCAS. I've learned a few new things from your videos, and I appreciate you sharing your info, time and effort. 🙂

  5. Hi Mayo! Love your videos and that you have been able to recover so quickly! I have recently been diagnosed with Lyme and MCAS and am interested in the genetic testing you mentioned, to determine the best meds, as I have not been able to find an effective antihistamine yet. Could you please elaborate on the type of testing you had that led you to find an effective antihistamine? Thanks so much!

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