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

I just looked up Crohn's disease: an inflammatory bowel disease and eczema is an inflammatory disease. I see why your case is complicated. Eczema is an auto-immune disease and many of us with eczema have another auto-immune disease, for example I had leukemia. I thought Crohn's was an auto-immune disease but recent studies are discounting that.
I did forget to mention taking Chlorella like mariannj mentioned. Yet I also take a bunch of other herbals recommended to lower inflammation, like oregano. I either take the oregano oil capsule or add fresh oregano (it grows easily year round in my zone 6) to my cilantro smoothie, yet I had been adding oregano since last October and had a GD re-occurrence start in Feb/March. The oregano I am sure is helping with lowering my yeast and overall inflammation. I know Crohn's is an inflammatory bowel disease and the reason I add oregano is that it helps control the residual hard to kill yeast that lives in the bowels. The yeast is a living entity and the waste it gives off raises our histamine levels. Ever wonder why we get sugar cravings? Your yeast is demanding to be fed.
Going off sugar now for almost a year I never look at a dessert and have my mouth water because the yeast isn't screaming to be fed. We are all here to learn and share ideas and yes try anything that doesn't seem dangerous.
Your doctor brutally shared with you, "GD is really gonna just suck for you". My new young derm took one look at me and almost got giddy! Saying, "Wow, you have GD and I only get to see about 1 case a year". I had never heard of it before. I went to my favorite eczema site, dermnetnz.org and looked at photos and descriptions and don't see how other derms could have misdiagnosed it. Still I am grateful she figured it out in one look. At least being told I had GD gave a name to my tormentor, even after I learned nothing much helped but time. My first outbreak was 1 full year and then for 4 years, 6 months on and 6 months dormant. Also be hopeful as my subsequent outbreaks were not as completely debilitating. My symptoms were about 30% less severe. Awful yes, but better. As I often mention, going to many different dermatologists has made the difference for me as I often learn something new.
I hope you will have success like many of us have had. I wish more GD sufferers knew about this treatment. I wrote up my history using cilantro and included info on accessing our GD blog on the Mayo, plus the earthclinic site Kimass1 turned us on to and gave it to my local derm and will bring this info it to my Western derm when I visit this fall. I want them to mention this to their patients, as I think it helps about 50% of us. My local derm had never heard of cilantro helping.

I am literally dying. This is spreading to places where the sun don’t shine. Like, never. Burning like carpet burns. I am bruised everywhere from scratching, although I try not to.

Going to Mayo Clinic in Jax, but they can’t get me in until dec 16.

I’m beginning to wonder if this is something else, because of where it is going.

Path report was short and sweet. Said acantholitic dermatosis consistent with Grover disease. That’s all.

Anyone have any suggestions as to where I can get help? Dec 16 is too far away.

Seems no one cares about Grover sufferers. There’s not enough money to be made... well I wish I had done something different right my career path.....

I’m sorry you’re having such a rough time. I understand what you’re going through. I was actually having suicidal thoughts the first few months. It will get better. You will find something that your body will respond to. Cilantro, chlorella, ice packs, sarna and soaking in the pool were the best natural treatments for me. Clobetasol liquid and a round of steroids when things were unbearable. I just spoke with a woman on Facebook that said hers went away after she stopped eating peanut butter and McDonald’s fries! It’s literally the strangest and brutal skin disease I have ever heard of. No rhyme or reason on what can cause or cure it! By the way my girlie parts we’re affected too!

I’m sorry you’re having such a rough time. I understand what you’re going through. I was actually having suicidal thoughts the first few months. It will get better. You will find something that your body will respond to. Cilantro, chlorella, ice packs, sarna and soaking in the pool were the best natural treatments for me. Clobetasol liquid and a round of steroids when things were unbearable. I just spoke with a woman on Facebook that said hers went away after she stopped eating peanut butter and McDonald’s fries! It’s literally the strangest and brutal skin disease I have ever heard of. No rhyme or reason on what can cause or cure it! By the way my girlie parts we’re affected too!

I am literally dying. This is spreading to places where the sun don’t shine. Like, never. Burning like carpet burns. I am bruised everywhere from scratching, although I try not to.

Going to Mayo Clinic in Jax, but they can’t get me in until dec 16.

I’m beginning to wonder if this is something else, because of where it is going.

Path report was short and sweet. Said acantholitic dermatosis consistent with Grover disease. That’s all.

Anyone have any suggestions as to where I can get help? Dec 16 is too far away.

Seems no one cares about Grover sufferers. There’s not enough money to be made... well I wish I had done something different right my career path.....

I am literally dying. This is spreading to places where the sun don’t shine. Like, never. Burning like carpet burns. I am bruised everywhere from scratching, although I try not to.

Going to Mayo Clinic in Jax, but they can’t get me in until dec 16.

I’m beginning to wonder if this is something else, because of where it is going.

Path report was short and sweet. Said acantholitic dermatosis consistent with Grover disease. That’s all.

Anyone have any suggestions as to where I can get help? Dec 16 is too far away.

Seems no one cares about Grover sufferers. There’s not enough money to be made... well I wish I had done something different right my career path.....

If by "spreading to places the sun don't shine" you are referring to female privates I have had great success getting relief from chronic female issues in the vulva, not classic yeast which has discharge, but burning exterior tissues . Many of us with GD have multi issues which adds to the confusion of treatment and diagnosis. Last Oct I went one an anti-inflammation diet. I have mentioned this many times on this site, William Crook, MD, The Yeast Connection Handbook, I have the later addition that includes some herbals like oregano and caprilic acid. Crook is a pioneer, one of the first MD's to tie in diet to elevated yeast as the culprit in raising inflammation. I found an old book for 25 cents at the library sale, yet I saw it is still for sale on Amazon. Simple, easy to follow plan. Detox for min of 2 months is a challenge, but after that more foods are introduced. The Whole 30 diet Mariannj is on is more brutal as now I can have specific carbs and add back limited natural sugar in fruit. I noticed a difference in my privates in 6 weeks and was so incouraged I kept up the detox for 3 months as many more recent diets suggest. Yes hard to give up natural sugar and from your photo you look slim like me. Weight loss is an issue. I can't loose more weight. After being on this almost year I have dropped 15 lbs and down to 121 at 5' 6". I eat volumes of food, yet giving up gluten and processed sugar for life does something to the metabolism and the food doesn't go to fat in the body .
I have great empathy for you with your commute. I am older and retired, but still travel distances at times. When in a full blown breakout leaning back in a seat was too painful, so I would drive hunched over the steering wheel for hours. As you know our back muscles ache from this unnatural position.
Please hang in there encouraged by the hope that in most cases the first break out has the worst symptoms and it lasts the longest. Then most get a break, for me it would be about 5-6 months, then another breakout for me for 6 months, but with each breakout it would be at least 15% less severe. After living with it for 4 years I was down to break outs at least 30-40% less severe. Now the cilantro has been a miracle arresting my March 19 breakout, however something is going on with my lower back torso, the all to familiar itch. Yet can't see the typical rash bumps coming on. Still as mentioned I have done everything wrong. Brutalizing my body with record breaking heat and getting soaking wet with sweat because of my activity.
I see you live in South GA and I lived in Valdosta for a year. I taught school back in 1970-71 in an old red brick 2 story schoolhouse in Hahira GA- no air-conditioning. I made my own sleeveless cotton dresses and lived on those tall glass bottles of coke out of a machine and for the teachers we have a huge kettle full of sweet ice tea with plenty of ice. My hair was always in a ponytail! Nothing like GA heat and humidity which would aggravate GD conditions. Back then no eczema for me.

@pen2015 This is how I managed an appt. with the dermatologist. I called every day for 3 days, pleading my case. On the fourth day I said I didn't know how I could live with this any longer. I was totally sleep deprived and making wrong decisions. Each time I called I told all my symptoms and I described them brutally. On the third try, the receptionist asked if I could come in the next day!!!!! Granted, I was an already established patient, but I never gave up calling. I believe they thought I was suicidal although I wasn't. The doc recognized Grovers in 2 seconds. I started with triamcinolone. It eased the itch/pain a little. After two weeks I was better but no where near normal so I got on this site and the rest is cilantro history. I also began the whole 30 diet and switched to only pure cotton next to my skin. It took a few months but I finally had results. I discontinued the triamcinolone when I started cilantro, and I hated even handling it Two days ago I felt some major burning painful itching right under my bra. I had been running around all day in the heat and was very stressed. When I removed my bra it was very wet (a synthetic material) and I saw the red bumps. I immediately applied triamcinolone for two days and increased my cilantro. The itching and pain has disappeared. I know the bra was too tight because I had gained 9 pounds. I also remembered that I had washed the bra in Dreft instead of my usual All free clear. It is a delicate tightrope that I walk. I thought I could make some changes. It's time for me to be more careful with my diet again and keep the cilantro dose higher.

If by "spreading to places the sun don't shine" you are referring to female privates I have had great success getting relief from chronic female issues in the vulva, not classic yeast which has discharge, but burning exterior tissues . Many of us with GD have multi issues which adds to the confusion of treatment and diagnosis. Last Oct I went one an anti-inflammation diet. I have mentioned this many times on this site, William Crook, MD, The Yeast Connection Handbook, I have the later addition that includes some herbals like oregano and caprilic acid. Crook is a pioneer, one of the first MD's to tie in diet to elevated yeast as the culprit in raising inflammation. I found an old book for 25 cents at the library sale, yet I saw it is still for sale on Amazon. Simple, easy to follow plan. Detox for min of 2 months is a challenge, but after that more foods are introduced. The Whole 30 diet Mariannj is on is more brutal as now I can have specific carbs and add back limited natural sugar in fruit. I noticed a difference in my privates in 6 weeks and was so incouraged I kept up the detox for 3 months as many more recent diets suggest. Yes hard to give up natural sugar and from your photo you look slim like me. Weight loss is an issue. I can't loose more weight. After being on this almost year I have dropped 15 lbs and down to 121 at 5' 6". I eat volumes of food, yet giving up gluten and processed sugar for life does something to the metabolism and the food doesn't go to fat in the body .
I have great empathy for you with your commute. I am older and retired, but still travel distances at times. When in a full blown breakout leaning back in a seat was too painful, so I would drive hunched over the steering wheel for hours. As you know our back muscles ache from this unnatural position.
Please hang in there encouraged by the hope that in most cases the first break out has the worst symptoms and it lasts the longest. Then most get a break, for me it would be about 5-6 months, then another breakout for me for 6 months, but with each breakout it would be at least 15% less severe. After living with it for 4 years I was down to break outs at least 30-40% less severe. Now the cilantro has been a miracle arresting my March 19 breakout, however something is going on with my lower back torso, the all to familiar itch. Yet can't see the typical rash bumps coming on. Still as mentioned I have done everything wrong. Brutalizing my body with record breaking heat and getting soaking wet with sweat because of my activity.
I see you live in South GA and I lived in Valdosta for a year. I taught school back in 1970-71 in an old red brick 2 story schoolhouse in Hahira GA- no air-conditioning. I made my own sleeveless cotton dresses and lived on those tall glass bottles of coke out of a machine and for the teachers we have a huge kettle full of sweet ice tea with plenty of ice. My hair was always in a ponytail! Nothing like GA heat and humidity which would aggravate GD conditions. Back then no eczema for me.