Tryptasemia & Co-Morbidities

Screenshot 20210123 2255143I’ve known for months that Frugal Black Thumb Gardening's roses needed a trim. Besides looking like a mess, they were impinging on my patient’s neighbor’s yard. One bush had been overtaken with blue wildflowers.

Getting them back under control was going to be more than a thorn in my side. 🆕 3/31/2021 See UPDATE at the end.

PXL 20210117 021127046Every medical disease and disorder is, no doubt, considering the specific impacts of COVID-19 to their population. Did you know that a drug commonly used in the Hereditary Alpha Tryptasemia Syndrome (HATS), Mastocytosis, and mast cell disorder populations has shown tentative antiviral effects? And have you or anyone you know with HATS tested positive for COVID-19?

ashton_h20tinyI journalled the following during my first-ever trip to Colorado, back in January 2010, perched in the towering Rocky Mountains:

“I woke up dry this morning…slight headache, dry mouth, and—this I’m not used to—dry lower throat. It’s fascinating to listen to my biofeedback. We’re supposed to drink 4 cups of water with each meal and 3 bottles of water in between. I’ve been drinking a ton of water—compared to my normal intake—but I have to be honest with myself that I haven’t been drinking as much as I should. I drink some water every time I thought about it. But is that good enough?"

Nope.

A) My mind was not yet calibrated to how much H20 I needed in the Rockies' altitude, so I couldn't trust it. My body was probably crying out for water in little ways, but I just hadn’t learned how to listen.”

B) I am prone to altitude sickness (common in those with Hereditary Alpha Tryptasemia Syndrome, or HATS), but I didn't know it at that point.

C) I have vibratory urticaria (diagnosed by the National Institutes of Health, or the NIH) from the lengthy, cross-country flight; again, I didn't know it at that point.

I wonder if it's the same with my spiritual thirst? 

tryptasemia logoWhen you have a mystery illness, it's hard enough to get diagnosed with the recognizable disorders. It's important to remember: often, doctors only diagnose disorders they're familiar with.

tryptasemia logoThis week, I had the opportunity to be one of the 15 people interviewed about the potential need for a mast cell treatment. It is too early for timelines; however, just the knowledge that researchers are targeting our needs is very encouraging. They are also collaborating with the National Institutes of Health.

The following is a 7th day reaction to a pair of vaccines, shingles and pneumonia.

PXL 20201008 211537536

Note the following:

  • This patient has been diagnosed with shingles twice in the past (more than 5 years previously).
  • This patient has been diagnosed with pneumonia multiple times in the past (more than five years previously).

IMG 20200317 2005163*Or whatever the current pandemic may be.

As symptoms go, cough is relatively benign--until it's not. For those of us with not-fully-managed, chronic, or idiopathic cough, this appears to be a societal risk, from the perspective of anyone not "in the know." This article provides some options that have been beneficial for me.

tryptasemia logoBut my tryptase isn’t high--I'm looking right here at my LabCorp readout, and it says my tryptase is normal.”
 
In many (or even most) testing readouts, the ranges that are currently displayed for tryptase were often calibrated to test a different condition—mastocytosis--and are probably still considered relevant in that scenario.

20170815 132146Several years ago, our family had the good fortune to visit Quebec, Canada. I wanted to climb Mont-Saint-Hilaire, especially because of the pegmatite(s) found there. (See our Morefield mine project; that mine follows a pegmatite in Amelia, Virginia.) Our family walked together regularly, so this hike should not have been excessive.

FB IMG 1585733990776This was first published on Facebook as a Public article.
 
I am going to break form and offer some learnings from the beginning, before I tell my story. First, people with Hereditary Alpha Tryptasemia Syndrome (#HATS) should always have a phone on their person.

tryptasemia logoTryptasemia.com and Tryptasemia.org were created to help people find information about Hereditary Alpha Tryptasemia Syndrome quickly. Much of what can be found on a quick search includes scientific papers and Facebook groups which are closed.

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