Year Two of Living Dangerously With Ehlers-Danlos Syndrome and MCAS!
Oct 22, 2018
by Russell Irvin Johnston
Wherein — despite reacting badly to the sun — I dumped antihistamines (H1 and H2) and set out to get a tan.
Nearly two years ago I wrote up my plans to live dangerously here:
The prescription part of that plan didn’t last long, I wasn’t happy with the effects of the drugs I choose, so I dumped the elavil (which I was using as a very powerful antihistamine) and all my other antihistamines and concentrated on just getting a tan — an even more dangerous plan, perhaps! To get a proper tan, unfortunately, you pretty much have to let go of the relief antihistamines afford you; because the master hormone histamine, which does so many things, is a critical part of the chemical pathway that triggers melanin formation (a tan.) This turned out to be less of a problem than I thought, since melanin boosts your innate immune system, making it more competent.
Why the heck bother with a tan at all? Much less make it a health priority? Well, it turns out that melanin comes in many forms and is not a passive molecule — to the contrary, it’s a vital part of the innate immune system; the very system that dysfunctions in MCAS, and that dysfunction may cause hypermobile EDS (hEDS.)
So what progress did I make? Considerable, I believe. I’ve just finished nearly two years dedicated to building that melanin. I now have a decent tan, and continue to bask it in sunlight (UV.) Even though sunlight was a definite MCAS trigger for me, and still is to a degree! People with EDS are famous for having “translucent skin.” Not surprising if you’re reacting to sun exposure, which was certainly the case for me. Over the last twenty years we’ve learned that melanin is far from being just a passive sunblocker! It’s a very active part of our innate immune system that kills bacteria and viruses, reduces reactive oxygen species, may be able to store energy and is also wonderful at binding heavy metals. A marvel. Practically snakeoil. So if you have a disorder of the innate immune system, such as MCAS (Mast Cell Activation Syndrome) you surely want to have a nice tan working for you; it’s a good bet that you’ll be better off if your innate immune system is in good shape, not bad shape.
At least, that was my thought going in, more than two years ago. So how’s that working out?
Very well — yet not all that different in some ways, too. For sure, things aren’t the same. Before getting a tan, my diet had narrowed a great deal, seemingly to a dozen foods. (I could eat any meat, but was avoiding meat to avoid gout.) Now — aside from gluten — I can eat anything I want, and do. Anything. So far as I know, there are only two foods that I react to at all now (grape juice and maple syrup) and these secondary reactions are fading, too. So that’s hella good. I now always know what triggered any sort of MCAS reaction I have. Every time. That’s huge for anyone with MCAS, and well worth the price of admission by itself. I react a little to cold still, but not much as far as I can tell. As for heat — I was all but immune to the heat this summer. Perhaps melatonin helps radiate heat very well? Second-hand smoke (or vape) can still hammer me hard and exercise intolerance is still real, too. All in all, where MCAS triggers are concerned, I’m far ahead of the game.
But general inflammation is a different matter. Once I had a tan I began sleeping better and had just a bit more energy. But only a bit, because a general moderate level of inflammation continued which was pretty much the same from day to day. However, the really good part is, I’m not taking any antihistamines, and I’m doing as well as I was back when I was taking them.
In summary, a tan hasn’t proven to be a cure or anything like that, yet it has worked a significant improvement in what I can eat and controlling triggers.
And I might get even more improvement over the next few years (maybe), although I’m not counting on that. In the old days, a century ago, “sun cures” took years to accomplish, after all. Meanwhile, I certainly look healthier! Everyone says so. So should you drop antihistamines (not too suddenly) and get a tan once the sun is high enough in the sky? I recommend it. Highly. Anyone suffering from a modern disease-of-inflammation of any kind, but especially MCAS, is likely to benefit from having working melatonin. It’s not magic, but it has been a big help in getting MCAS under my control. Of course, your mileage may vary, and my mast cell issues were not as life-threatening as they are for some people.
Now it’s October, and I’m continuing to get lots of UV, although it’s late enough in the year that there’s no UVB in sunlight. That’s okay, UVA is very much worthwhile too, and is known to help stimulate the immune system. Sunlight and UV isn’t all about UVB, even though UVB is necessary to get yourself a tan, of course. I’ve just put up a McGyvered a new window pane made from plastic-sheet for the winter so I can keep getting lots of UV while I’m busy typing at the computer without losing heat. A rigid sheet of OP4 plastic might have been an even better window solution to let the UV in, but that’s both a lot more work and expensive: $500 for a full sheet. For now, I’m happy with my translucent plastic window.
Still, if I hoped that perhaps melanin by itself would be a cure for MCAS or hEDS — giving me another wonderful remission — that didn’t happen just from getting a tan. What I would now say is that melanin is just one of about five environmental factors you have to get in line before you can get yourself a “cure” for EDS and MCAS, or at least, a full remission. (NOTE: by remission, I mean that the disease is halted. However the disability — the bulk of your poor collagen — remains.)
Did you notice that phrase “up until a month or two ago,” And “cure?”
In the last three months, things have changed a lot. I’m still keeping up with my UV exposure, but I’ve begun to concentrate on another factor that I hadn’t taken seriously before, and holy mastadon-poop did it seem like I was getting results. Stunning in fact. That factor is so important that I now think I may be able turn remissions on and off at will by controlling it, believe it or don’t.
But only if I can avoid heavy doses of vaped nicotine! As I write this, I’m recovering from getting hammered by a couple of weeks of nicotine; and then nicotine withdrawal which was probably worse, and yes, that’s a thing even for second-hand smoke if you get enough. I’m hoping that when I get back on my feet, I’ll be able to re-establish my remission from EDS and MCAS. If so, you’ll hear from me as to just what my latest “lifestyle change” is. Loudly!
But that’s a longer tale, this article is long enough; I’ll leave my journey here, for the moment, as I recover from my latest reversal.
What I will post about next, probably in a few days, is what experiencing a “cure,” or at least a very solid remission of MCAS and EDS is like. Spoiler alert: sure, it’s wonderful, but it’s not all roses, not by any means: with tons more energy, it’s all too easy to rip your body apart doing too much.)
Photo credit: Ryan Rego
LATE ADDITION — more research:
Inhibition of mast cell degranulation by melanin.
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TPSAB1 copy number genetic trait discovery
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Your tan vs mercury — citations
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