Good morning, everyone (Science jargon incoming so put your thinking hats on)!
I’ve come bearing some interesting news that might help you. Let me provide the context.
If you’ve read any of the content of this blog, then you know that I started it when my daughter was diagnosed with childhood-onset bipolar disorder in 2011. A few months later she was diagnosed with childhood-onset schizophrenia. A few months later, she was diagnosed with schizoaffective disorder-bipolar type. It was quite a time for an 11 year-old girl.
We saw so many specialists during that time that I am still paying off the medical bills, and we had health insurance! That was five years ago! Suffice it to say, those years are a blur. Some kind of lucid nightmare. So, what news do I have?
Ever heard of a mast cell?
If you have not and you yourself or someone you care about has a biologically-based brain disorder, then heads up.
A mast cell is a type of white blood cell produced in our bone marrow. More specifically, it is a type of granulocyte. A granulocyte is a cell (-cyte means ‘cell’) that contains ‘granules’ which the cell will eject into nearby tissue or the bloodstream once ‘activated’ or signaled to do so. The granules are like a chemical cocktail in that these granules are chemically varied. In other words, there are a lot of different chemicals inside a mast cell, and when the mast cell activates it dumps its chemical payload wherever it is in the body.
The granules consist of familiar sounding chemical mediators like histamine, heparin (anticoagulant), and serotonin. Some of the chemical mediators within the mast cell may not sound so familiar like prostaglandins and cytokines, for example. Mast cells are heavily involved with allergic reactions, hives and flushing, asthma, and anaphylaxis. They are also involved with modulating the blood-brain barrier (BBB). Recent research has shown that mast cells are involved in a lot of other bodily activities, too, which is why they can be such troublemakers.
What does this little white blood cell have to do with, well, anything pertaining to you?
About ten years ago, a disorder called Mast Cell Activation Disorder (MCAD) was “discovered” on the heels of another rather rare neoplastic disorder called mastocytosis (there’s that word root again –cyte). A mastocyte is a mast cell. The suffix -osis means “condition”, but it often describes an increase in number or a proliferation. So, mastocytosis is a condition in which mast cells proliferate and in which there is an abnormal condition of the mast cells themselves. They do not behave like they should. It was also determined that there should be a spectrum of mast cell disorders, and MCAD and mastocytosis should be on that spectrum–mastocytosis being on the severe end of that spectrum; MCAD being somewhere in the middle. Anaphylaxis Syndrome, another manifestation of a mast cell disorder, is also on this spectrum.
What does this spectrum have to do with mental health?
It has been determined by specialists studying mast cell disorders that neuropsychiatric disorders can be a manifestation of activated mast cells. Wha….?
Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.
And that’s just one study.
Here’s some anecdotal evidence. I recently visited my friendly, local allergist who just returned to my city from practicing at the Mayo Clinic. I have a long history of weird health issues. Weird health issues. Also? Over the years, I have acquired a long-ass list of allergies which almost always result in anaphylaxis. I almost die a few times a year. I grew tired of almost dying so frequently and made an appointment with an allergist in the know. After Dr. Allergy reviewed my history and case, she said, “I think you have a mast cell disorder.” Off to the local mega-versity for fancy tests! When I saw her for my follow-up, she declared that I was on the mast cell disorder spectrum. Okaaaaay…now what?
Lots and lots of antihistamines every day to manage the unruly mast cells. Multiple Epipens placed everywhere in my house and on my person at all times. Benadryl as well. Low-histamine diet. Anaphylaxis action plan in the house, with family and friends, and with me for trips to the ER as well as blood and urine panel orders for the ER every time I show up there with an allergic reaction. What a pain in the…
Here is what I noticed from the high antihistamine doses:
- my chronic migraines suddenly got better
- migraines were treatable with a single dose of triptan and antihistamine (second-generation)
- GI issues improved dramatically
- body pains improved
- anxiety issues improved dramatically
Note: high doses of Benadryl lowers seizure threshold.
Here comes the really interesting part.
Before Grace became symptomatic or entered the prodrome, she was hit hard with a mycoplasma infection. Mycoplasma is a class of a bacteria that lack a cell wall making them more amoeba-like and invulnerable to most classes of antibiotics because many antibiotics work by breaking down the cell walls. In the case of a mycoplasma infection, the antibiotics paralyze the bacteria to prevent further multiplication so that your immune system can kill it. This can take weeks to months depending upon which variety of mycoplasma you’ve got (there are over 200 types), and symptoms can recur years after infection. Sort of like a bad knee aching before it rains. Well, aside from mycoplasma making you really sick, what else do they do? This:
What does this mean? The type of mycoplasma bacteria that causes pneumonia and upper respiratory infections activates mast cells. What kind of cascade can happen from there?
Eosinophilia is an increase in eosinophils which is another granulocyte associated with allergic reactions, parasites, inflammation, and cancer. In very simple terms, eosinophilia, a high eosinophil count in the bloodstream, would be, for example, common to see during ragweed season if you are allergic to ragweed. Your eosinophil count would be elevated due to the presence of an allergen. What does eosinophilia have to do with anything? Mast cells influence eosinophils and vice-versa. When Grace was released from her first hospital setting, she had eosinophilia. The pediatrician on duty spoke to me about it. She didn’t know what to make of it but told me it was noteworthy. I should look into it. I told our pediatrician. No one knew what to do about it at the time. Then. But, now? I wondered in light of what I am learning about mastocytosis.
So, what did I do? I experimented.
Grace gets terrible migraines–even now. It was a hallmark of her prodromal symptomology. We would have to take her to the specialty hospital for Toradol injections to stop the migraine cycle. So, when she started getting a migraine two weeks ago, I wondered if a naproxen-antihistamine cocktail would stop it. Naproxen targets prostaglandins (a chemical mediator produced by mast cells)–although NSAIDs are often contraindicated for people with mast cell problems– while the antihistamine (second-generation) targets certain histamines. Guess what? It worked. It stopped her migraine cycle.
I added a second-generation antihistamine to her medication regimen–an AM and PM dose. She has not had a migraine since, and her mood has improved. She is no longer experiencing cycling in her mood. Her focus is better. She is less irritable and agitated. Her daily flushing is gone. She is sleeping better. Her affect has improved, and persistent urticaria (hives) have healed as well.
MCAD is a new disorder. Few doctors are familiar with it. My rheumatologist admitted to knowing what it is but knowing next to nothing about it. She had little understanding and yet mast cells affect connective tissue and the immune system significantly.
So, what is the conclusion?
Not everything is always as it seems. What we know today about our current health status may not be what we know tomorrow.
If you want to know more about mast cell disorders, then go here:
The Mastocytosis Society (recommended to me by my allergist)
MAST ATTACK: EDUCATING PEOPLE ABOUT LIFE WITH MAST CELL DISORDERS (An outstanding blog maintained by a scientist with a mast cell disorder)