Since childhood, and worsening with age, I have a multitude of allergic type reactions, to bug bites, cigarette smoke, scents, some personal care products (mine or worn by others), perfumes, chemical cleaners, certain animal hairs (wool, rabbits, bears and a few specific cats or dogs)
Band-Aids, medical tapes, balloons, freshly repainted buildings, new construction, carpet glues even months after installation, a few specific foods and food additives, herbs, medications (like every narcotic known to man - no "good drugs" for me!),
heat, sunlight... Symptoms range from redness, itching, hives, tingling tongue, neurological issues, to migraine headaches and vomiting, to racing heart, tight throat and lungs and even full blown anaphylaxis. For several years now (and under doctor's orders), I've rarely miss a dosage of Zertec every 24 hours. When I forget at bedtime I'm in fullblown reactive mode, without any other trigger, simply to
life, by the time I wake up the next morning. I carry Benadryl and an Epi-Pen at all times, because I still have plenty of break through reactivity with various exposures. I have taken a few ambulance rides for more sever reactions.
Allergy testing says I have a true allergy to
DUST, that's it. Oh, and to my Albuterol inhaler (that one wasn't a blood test, just the allergist's first hand observation when he had me use it in his office). Arrrgggg! Now don't get me wrong, I'm happy not to be
allergic to anything else. But with classic allergies there are usually specific treatment regiments. If I'm not
allergic to these things, then doctors aren't quite sure what to do with me. My allergist told me that he believes my anaphylaxis to be phyco-sematic, but since I've even had some of these physical manifestations, visibly witnessed by others, when I've been unconscious, I find this a little hard to accept. I'm more prone to think that, for many doctors, if they don't have a blood test with readable results that they fully understand, in their minds often the illnesses simply "do not exist" because their testing doesn't say so.
I've been offered a variety of explanations, some of which may partially answer the riddle, but nothing that fully satisfies yet. The first explanation has been
Multiple Chemical Sensitivity (MCS). After the allergy testing came back without answers, the idea of
toxicity was introduced, that rather than being allergic to things, I'm having toxic reactions. I think these two may be on the right track, but don't offer a full answer. Through hours of research (special thank to
Danette Hillier-McVeety, of the
Ehlers-Danlos (and all related disorders) Support Group, for answering initial questions and pointing me down this investigational pathway!), I personally think we need to investigate
Mast Cell Activation Disorder (MCAD) or even perhaps
Mastocytosis (the sufferer has too many mast cells to begin with, whereas with MCAS, they are either misshapen and/or release too much histamine and heparin) as it truly seems to me that my own body is overly active in histamine production and it doesn't take much to push it over the edge into full blown reactivity! I'll be addressing these concerns with my doctor this summer. In the meantime, I need one place to list resources I'm finding:
Mast Cell Activation (Always Well, talks about some testing that can be ordered. "In
Mastocytosis, the problem can be making too many mast cells or having incorrectly shaped cells. Very little is understood about
Mast Cell Activation Disorder, which shares symptoms with Mastocytosis, but the usual clinical markers are not always present. It’s theorized that in Mast Cell Activation Disorder, for unknown reasons, one’s mast cells become hypersensitive, ‘behave badly’, and thus are easily triggered to release their contents.
"Mast Cell Disorders are not the same as Multiple Chemical Sensitivity. But some people with MCS may be incorrectly diagnosed and actually have a mast cell disorder. In his article called
The Role of the Brain and Mast Cells in MCS,
Dr. Gunnar Heuser, MD described how he tested a number of his MCS patients for markers that indicate mastocytosis or a mast cell activation disorder. A surprising number turned up positive. Dr. Heuser postulates, '...that chemical injury can trigger a mast cell disorder which in turn can cause MCS.”)
Allergies, Fibromyalgia or Mast Cell Activation?
Mast Cell Activation Disorders (fromUpToDate)
Mastocytosis Explained
Hyperadrenergic Postural Tachycardia Syndrome
(POTS) in Mast Cell Activation Disorders (I "flunked" or "passed", depending on how you look at it, my tilt table test with flying colors, years ago.)
Mast Cell Diseases (Wikipedia)
Mast Cell Activation Disorder and Chronic Illness (Methylation)
MCAS Guide
Diagnosis Histamine Intolerance (scroll down past the adds, yes they are trying to sell their products but the information may still be helpful)
If I understand correctly, Mastocytosis can only be confirmed with a bone marrow biopsy and MCAS can be confirmed with a blood test.
