Letter To One Of My Doctor
- Girl In A Bubble
- Sep 8, 2025
- 11 min read
Updated: Sep 25, 2025
I want to share with you a letter I wrote for one of my new doctors who was interested in helping treat and learn about my diseases.
With my request and eagerness to help, My new Dr. reached out to one of the top educators of the disease which I had already seen, along with Dr A. help, my research, my new Dr. was able to put together a successful care plan and implemented treatments.
I am extremely grateful and honored my new Dr. became part of “the team” of Drs. that saved my life.
Good afternoon Dr,
Thank you for your assistance in helping me find a better quality of life.
After talking with you I'm very pleased you are willing to help me.
Thank you!
I do take my rapidly declining health seriously. I'm trying to help myself as much as I possibly can. I have followed every direction and advice Dr A. has given me.
I also educate myself. It's a big challenge and a bit overwhelming when I can't get the medication Benadryl in the purest form as he recommended without a prescription.
( In taking my care my Dr implicated some of the protocol that saved my life)
my Dr office found a compounding pharmacy that was the purest ingredients.
I wish this disease was as simple as take a pill or eat a food or just meditate, but it's very complex and complicated.
While in Dr A. office I believe it was mentioned “I was one of his most severe cases he's seen over many years of practice" it's even in his follow up notes.
(Im happy to say that after treatment I became one of his most improved patients ever in
Dr A. years of work.)
I feel as though my body is starting to have dangerous consequences from years of gaslighting and neglect in the medical community.
I'm asking you to please be patient with me.
It's not fun for me and it's rather embarrassing to have to ask for help when my body is failing me to a disease I cannot control.
Please see me as person who needs medical help beyond a normal textbook case with feelings without judgment.
I look to you for answers when I'm at a loss.
It's truly uncomfortable for me to have to educate ER Drs about my condition and it scares them away from treatment because I'm high risk.
While I'm searching for answers I'm growing weak.
I'm ready to try new things in your office but I think we need to have an Emergency protocol plan with your office and the hospital in place before starting.
I don't think a time of crisis is beneficial to my treatment if I have to educate the Drs caring for me and I feel it puts me at higher risk for complications.
Here are a few more links to help with understanding of my diseases and conditions.
What is Mastocytosis? Or MCAD, MCAS,
I'm going to attempt to briefly define what the disease is with non-medical terminology and use this opportunity to tell more about the way it affects my family on a daily basis.
Simply put, Mastocytosis, MCAD, MCAS, means an abnormal growth of mast cells.
Everyone has mast cells in their bodies; they are part of our immune system and they are made in the bone marrow.
After they leave the bone marrow, they circulate in our bloodstream throughout our entire bodies, and cluster in many different areas of the body.
Mast cells contain roughly 200 different chemicals inside them, and when they release them, they create all types of sudden and chronic symptoms.
Some are life threatening whereas some are debilitating so it severely affects the quality of one's life.
Most people, mast cells only release those chemicals if they have a real allergy and come into contact with that allergen.
For example, if you are severely allergic to peanuts, and come into contact with peanuts, it's your body's mast cells that dump all their chemicals into your bloodstream, and that is what causes the life-threatening and sometimes fatal allergic reaction.
The difference between us and them is that our mast cells release those 200 different chemicals all the time without us actually being truly allergic to anything.
Sometimes the chemicals leak out slowly and chronically whereas sometimes they dump out suddenly and quickly causing a life-threatening emergency.
It never stops. It's always there and it's always a problem.
The symptoms are many:
flushing, hives, rashes, swelling, itchiness, brain fog, headaches, migraines, vomiting, nausea, diarrhea, intense abdominal pain and spasms, acid reflux, feeling wired, extra high or extra low blood pressure that's episodic, high heart rate, fainting, dizziness, a low grade fever, a sense of impending doom--this can look like a panic attack, weepiness, nerve pain, tremors, breathing problems, muscle weakness, bone pain, blurred vision, anaphylaxis, cardiovascular collapse, and death.
There's probably more, it's just all I can think of at the top of my head.
Intense debilitating fatigue often follows.
When the sudden symptoms end, I call it "sleeping off a reaction".
Our mast cells are triggered to release their chemicals, causing any variation of the above symptoms, by anything in life. All the time.
When this happens, it's called a reaction.
We are triggered by things like fear, crying, pain, anger, getting really excited, being too tired, sudden or even slow temperature changes, heat, cold,
all types of weather throughout all seasons,
hormonal changes, viruses, bacterial infections
many medications, many vitamins and supplements, soaps and shampoos, natural herbs, seasonings, many foods whether they're good for your or not, many drinks, alcohol, artificial dyes, artificial flavors, artificial preservatives, MSG, nitrites and nitrates,
perfume smells, cleaning products, any strong smell (even scented natural oils), and the list goes on and on and on and on.
Nothing is technically safe.
So most can take daily antihistamines (like Benadryl but we take stronger ones that are designed to be taken daily) to prevent these chronic never ending reactions. It's impossible to remove all our triggers so these medications protect us but nothing works ALL the time.
Rescue meds are often still needed: IV hydration, epinephrine injections, Benadryl, and more.
Most often need A LOT of other medications, vitamins and supplements to protect our bodies from the affects of the chemicals and to treat the chronic affects of them.
But even these present as a potential trigger.
The medication designed to help, could actually make us worse. The same goes for the natural things.
Finding out what to tolerate through a lot of painful trial and error.
Finding medications, vitamins, and supplements that don't have inactive ingredients that trigger us is a HUGE challenge.
There are few IV medications some can take for anesthesia and pain, and even less that is over the counter. This is a potential danger when we find ourselves in an emergency with an ER department that knows nothing about it.
We Masties, have to know E.v.e.r.y.t.h.i.n.g. about the disease, as 95% of doctors and nurses know nothing about it and have no idea how to treat it. It's scary! The chronic symptoms are many as over time, these chemicals damage our bodies--mainly in our nerves and muscles (and by the way, the gastrointestinal tract is a muscle).
Parts of our bodies stop functioning the way they are supposed to, and become difficult to manage.
All the while, those chemicals are still circulating wrecking havoc in our bodies.
It's a constant battle to live anything that resembles a normal life.
Doing so takes a lot of love, patience, compassion, and support from those around us.
Sometimes it's going out of your way to make a meal we can tolerate. Sometimes it isn't wearing that scent when we are going to hang out. Sometimes it's being flexible when we change plans at the last minute because, say, it's too hot outside.
But all the time, it's just being there showing that you care that makes the biggest difference in the world.
Dysautonomias come in many forms, but they all involve the autonomic nervous system (ANS).
The ANS controls automatic activities in the body.
For instance, the ANS is responsible for maintaining a constant internal temperature, regulating breathing patterns, a steady blood pressure and heart rate, and, appropriate pupil dilation, sexual arousal, Symptoms of dysautonomia, therefore, generally manifest themselves as problems in those particular body systems.
Dysautonomias are more common in females and often occur during puberty, but they can arise at any age. Although there is a range of dysautonomias, they all share certain symptoms, including lightheadedness, fainting, unstable blood pressure, and an abnormal heart rate.Some dysautonomias are inherited or due to a degenerative disease, these are called primary dysautonomias.
Others are because of an injury or a separate condition, these are referred to as secondary dysautonomias.
Common conditions that can lead to secondary dysautonomias include diabetes mellitus, multiple sclerosis, rheumatoid arthritis, Parkinson's disease, and celiac disease.There is currently no cure for primary dysautonomias, but some medications and interventions can relieve the symptoms.
Secondary dysautonomias
often improve once the initial condition is treated.
Types of dysautonomia.There are at least 15 distinct dysautonomias; the most common are neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS). Below is a summary of some of the more frequent dysautonomias.
Neurocardiogenic syncope
Neurocardiogenic syncope (NCS) is the most common dysautonomia and affects tens of millions of people worldwide. The major symptom of NCS is fainting, also called syncope.When standing, gravity pulls blood downward toward the lower extremities.
This causes blood to drain from the brain. In a healthy person, the ANS tightens the muscles within the veins and alters the heart rate to make sure the blood does not pool in the feet and legs.These mechanisms don't always work correctly for people with ANS.
This means they are more likely to faint as the blood briefly leaves the brain.
Some individuals with NCS might only faint rarely, but others might have difficulty carrying out normal tasks because fainting is so frequent.
Most treatments or interventions for NCS are aimed at preventing the symptoms. The following changes to one's normal routine can make a big difference in those who have less serious cases of NCS:Increased fluid and salt intake can relieve most symptoms for some individuals.
Avoid standing in queues
Take shorter, cooler showers
Avoid saunas, hot baths, and sunbathing.
When standing, shift from one leg to the other and flex leg muscles Avoid alcohol
Reduce caffeine intake
Postural orthostatic tachycardia syndrome POTS is estimated to affect around 1 percent of all teenagers - somewhere between 1 and 3 million American teens.
POTS is about five times more common in females than males.
POTS is normally caused by a secondary factor, but it is often difficult to work out what that is.
Symptoms of POTS can include:
Lightheadedness and fainting
Tachycardia (abnormally fast heart rate),Chest pains,Shortness of breath,Stomach upset,Shaking,
Easily exhausted by exercise
Over-sensitivity to temperatures
The disorder has been associated with a range of other conditions and diseases, including: Autoimmune diseases.Diabetes.
Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins.
Genetic disorders or abnormalities.
Infections such as Epstein Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia and hepatitis C.
Multiple sclerosis.
Toxicity from chemotherapy, and heavy metal poisoning.
Traumas, pregnancy, or surgery.
The causes of POTS are still not understood, but researchers are investigating a number of avenues.
Some scientists believe the condition might be due to a genetic mutation; others think it may be autoimmune (an individual's immune system attacking its own cells).
Multiple system atrophy[Saggital section of the brain] Multiple system atrophy is often mistaken for Parkinson's in the early stages.
Multiple system atrophy (MSA) is a much rarer condition than POTS and NCS and is slightly more common in males than in females.
It is also more likely to occur in persons over the age of 50.
Approximately 25,000-100,000 Americans are estimated to have MSA at any given time.
It is often mistaken for Parkinson's disease because the early symptoms are similar. In the brains of people with MSA, certain regions slowly break down, namely the cerebellum, basal ganglia, and brainstem.
Little is known about the causes of MSA. In fact, experts know more about what it isn't than what it is. It is not hereditary, it is not contagious, and it is not related to multiple sclerosis.
At this time, there is no cure for MSA and treatment only manages symptoms and supports patients.
Autonomic dysreflexia.
Autonomic dysreflexia (AD) is most often found in people with injuries to their spinal cord. AD normally occurs when something irritates the region below the level of a patient's injury.
For instance an infection or constipation.
The patient's damaged spine prevents pain messages from reaching the brain. The ANS acts as if confused and reacts inappropriately, producing severe spikes in blood pressure.
Most treatments of AD aim to reduce the initial irritation, which prevents further attacks of AD
.
Baroreflex failure
The baroreflex mechanism is one of the body's many ways of maintaining the right blood pressure.
Baroreceptors are stretch receptors situated in important blood vessels. They detect stretching in the artery walls and send messages to the brainstem.
If these messages fail, blood pressure can be too low when resting or rise dangerously during times of stress or activity.
Other symptoms include headaches, excessive sweating, and an abnormal heart rate that does not respond to medication.
Baroreflex failure sometimes occurs after surgery, radiation for cancer, and nerve injury. However, the cause is often not known.
Treatment for baroreflex failure involves medications to control heart rate and blood pressure, as well as interventions to improve stress management.
Diabetic autonomic neuropathy
Diabetic autonomic neuropathy affects an estimated 20 percent of people with diabetes, around 69 million people worldwide.
The condition affects the nerves that control the heart, regulate blood pressure, and control blood glucose levels.
Symptoms can include the following:Resting tachycardia (fast heart rate),Orthostatic hypotension,Constipation, Breathing problems, Gastroparesis (food not passing through the stomach normally), Sudomotor (sweating) dysfunction
Impaired neurovascular function
"Brittle diabetes" (difficult to manage diabetes, usually type I, characterized by frequent episodes of hyperglycemia and hypoglycemia).
Treatment for diabetic autonomic neuropathy focuses on careful management of diabetes.
In some cases, antioxidants and aldose reductase inhibitors can reduce symptoms.
Familial dysautonomia,
Familial dysautonomia is a very rare version of dysautonomia.
It only affects a very small group of people of Jewish decent.
In all, there are an estimated 350 people in the world with familial dysautonomia.
Symptoms normally arrive at a young age and include:Feeding difficulties, Slow growth, A lack of tears,Frequent lung infections,
Difficulty maintaining the right temperatureProlonged breath-holding.
Delayed development, including walking and speech
Bed-wetting,Poor balance
Kidney, and heart problems.
Familial dysautonomia is particularly serious, there is no cure, and it is almost always fatal.
Known Triggers for Mast cell activation :Physical stimuli – e.g. heat, cold, friction of skin lesions, pressure, excessive sunlight, exercise, IgE and antigen
Anaphylatoxins – e.g. C3a and C5a
Biologic-response modifiers – e.g. interferon-a, Free radicals – e.g. reactive oxygen species (ROS)
Emotional factors – e.g. stress, anxiety, Growth factors – e.g. nerve growth factor, NGF; stem cell factor, SCF,
Hormones – e.g. adrenocorticotropic hormone, ACTH; corticotropin releasing hormone, CRH; estradiol; parathormone, PTH; urocortin, Ucn
Neuropeptides – e.g. bradykinin; calcitonin gene related peptide, CGRP; myelin basic protein, MBP; neurotensin, NT; somatostatin, SRIF; substance P, SP; vasoactive intestinal peptide,
VIP Neurotransmitters – e.g. acetylcholine Pharmacological agents – e.g. aspirin and other NSAIDs, alcohol, opiates, polymixin-B, amphotericin-B, quinine,
some drugs used in general anesthesia (inductors and muscle relaxants – succinylcholine, D-tubocurarine, gallamine, decamethonium), radiographic ⁄ contrast dyes,
dextromethorphan, b-adrenergic blockers, a-adrenergic and cholinergic receptor antagonists, thiamine, galiamine, esther-group local anesthetics, dextran, polymyxin B, escopolamine
Chemicals – e.g. detergents; food additives; xenoestrogens. Toxins – e.g. bacterial (Clostridium difficile); insects (e.g. Solenopsis, Hymnoptera); jelly fish
(Physalia); plants (e.g. Toxicodendron)
Viruses – e.g. measles; parainfuenza
Bacteria – e.g. adherent Escherichia coli
Penicillins, cephalosporins, sulfonamides, and fluoroquinolones cause the most
frequent reactions , but then again no antibiotic is completely safe for us https://www.ncbi.nlm.nih.gov/pubmed?term=20934625
Fragrances, solvents, perfume, hairspray , can cause mast cell to degranulate
References : Escribano L, Akin C, Castells M, Schwartz LB. Current options
in the treatment of mast cell mediator-related symptoms in mastocytosis.
Theoharides TC, Kempuraj D, Tagen , Pediatric-Penicillins, cephalosporins, sulfonamides, and fluoroquinolones cause the most frequent reactions , but then again no antibiotic is completely safe for us https://www.ncbi.nlm.nih.gov/pubmed?term=20934625
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The Origional "Girl In A Bubble"
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