Grover's Disease: What works to help find relief?

I would guess that GD is such a poorly-understood disease affecting too few people, and that the connection between the Shingles vaccine and GD is too speculative, for anyone to take any action.

I put the Bentonite clay powder in a large glass jar partially filled with filtered water and with this device that looks like a ball made out of thick stainless steel wire (which is for mixing shaker drinks), put on a tightly-fitting lid and shake it up. I don't drink it right away, however, because it still resists mixing well, so I leave it in the fridge for a day and then it mixes well with the water when I shake it up. Yes, you are right about the lead. You have to make sure you are buying "food grade" Bentonite clay from a reputable supplier. I have no idea if it is helping me or not, but if taking chlorella and cilantro is freeing up heavy metals in my body, the clay may absorb them and help get them out of my body when I do you-know-what! 🙂

I did tell my dermatologist about my reaction and he said there were similarities between GD and Shingles. He told me he would have warned me about it if I had checked with him first. I never read anything on the Shingrix literature about it trigger GD or triggering shingles in those of us with GD and never thought about asking my dermatologist firest.

My latest line of inquiry into GD will be exploring the contents of our sweat to see if our skin's reaction to our sweat could hold the key to this disease. It fits with the heavy metal explanation since we eliminate some of heavy metals through our skin. Most of us react to sweating in the summer, but GD is also very common in the winter. We are more conscious of sweating in the summer and more likely to wipe it off. We are eliminating many chemical components all the time. There are even phone apps in development to analyze sweat. Apparently the field of sweat analysis is quite large and I'm just about to dive in, so stay tuned...

Unfortunately I actually have no faith in “big pharma” to take any action and am very cynical about the possibility of any gov’t agency response.

I agree.

I am a runner and now have resorted to inside on my treadmill and you still sweat, but...more controllable. I will try the clove oil, I am also just beginning a treatment of cilantro oil in my hot tea each day. I have also included vitamin A each day....and have started Accupunture treatments....fingers crossed!

So, right at the beginning of my research into the role sweat plays in our problem, I find that there is a high incidence in fillagrin mutation with people who have any kind of atopic dermatitis (AD) Fillagrin is the substrate, or the glue, that holds our skin together and its deficiency causes problems with our skin pH (acid/base balance) and our skin’s ability to retain moisture. It turns out that sweating is necessary for our skin’s anti microbial function and skin moisturization. So researchers advocate more sweating followed by showering without soap. I have been taking histidine which contributes to fillagrin formation, not realizing that my fillagrin might well be defective so it might not have helped much. I continue taking 3 grams/day of histidine. I am starting to use my indoor sauna everyday and following with shower. Jury is still out but I’m definitely not worse. I am finding myself generally less itchy (I itch even if my skin looks clear.) I’ll post some references, but harder to do on my phone.

Runner, look into an ice vest. I have one called FlexiFreeze. With it I can be outside in hot weather for reasonable periods (barbecue anyone?). If I'm not too active I've been out for a couple hours in up to 90 degrees (in the shade). I've mowed my lawn with it (small lawn, but a non-motorized reel mower). I've even played golf in it. It would be great for running. I find I have to put it on for 10 minutes or so before I go out, and keep it on afterwards until I'm completely cooled down. Then a cool shower with no soap is nice (important not to disturb your skin microbiome).

My GD is waste to shoulders all around, mostly I've only reached red welt stages with some blistering and a few mall scabs. It itches all the time, like a 5 or 6 on the itch scale even when it's barely visible, but it gets really intense when it flares up.

Without the vest when I do go out on warm or humid day I get prickly and my spots get red and enlarged quite quickly. When I wear the vest they don't may get prickly but they don't progress. If I didn't wear the vest I'd suffer for days.

That's all preventative, but sometimes it just the GD just rears up and in these situations the ice vest is soothing and significantly minimizes itching and inflammation.

I spend a career in toxicologic and pharmacologic research and I come away from that experience not wanting to ingest or slather unnatural materials on my skin, especially to compromised skin (we're finding out more about adverse effects to the skin microbiome all the time). I've written about this ice treatment before, but no one responded either way so I don't know how it works for others. It has allowed me to completely stay away from any ingesting and slathering, etc. I see it as a means by which I have some control over my GD and not it over me. Try it, you'll like it.

I have no scientific reason why this is so, but sweating is one of the two worst things I can do for my Grover's condition, the other being direct exposure to sunlight for more than just a few minutes. Both of these things cause the old sores to go bonkers and new ones to emerge.