Mayo Clinic Connect
I have been diagnosed with Grover’s disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?
I was diagnosed in January after biopsies. Started cilantro smoothies daily in February. Rash free in 6 days and now off smoothies. I still mix one up once a week or so just because they are good for your digestive system. Doctors have no idea how to handle Grover’s.
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@frogger, I am so happy that you are off everything and just using cilantro once a week or so. I want to wean myself from the smoothies but I am addicted to them. Love all that fruit and almond milk! Ha ha! I have slowly added some carbs and sugar to my diet but they are not as satisfying as I thought they would be so I still stick pretty well to the whole 30 plan but I don't check everything for additives such as sugar now. I just know what to stay away from. I never realized how much of an inflammatory sugar was till I went off it. I continue to learn from this site and take support from it. I only hope we can help others. I am fortunate that my dermatologist knew immediately what Grover's is. He diagnosed it in about a second. I found out later that he is an expert in rare skin diseases. I told him about the cilantro and will tell him again when I see him this month.
Liked by gardeningjunkie
Wow! Six days. That is awesome! I am trying so hard to stay positive, so it is encouraging to read this. Gonna stick with cilantro for sure. Adding strawberries, bananas and celery, along with a frozen packet of superfood açaí and other green stuff. Lol, I didn’t have my glasses on this morning, so I can’t remember exactly what it was.
Yes 6 days but kept taking smoothies for 7 months before I stopped everyday use.
Liked by gardeningjunkie, MariannJ
I don't have the courage to give up the cilantro till I have zero signs of GD. I still have a very minor, barely noticeable area on lower back torso with a few scabs that simply won't go away with a minor itch from my March GD re-occurrence. It's no big deal and does not affect my life or keep me away from outdoor activities. Landscape projects for me in my yard in record heat and I work till I feel I am starting to get heat stroke and still no GD breakout. Cool down here in the Ozarks Thursday. 92 today, record breaking.
Liked by MariannJ, pen2015
I wonder if others, like you and me are acquiring a taste for the cilantro smoothie? To those starting to try it, it took me months to begin to tolerate it and about 5 months to find it refreshing. I'm happy with my anti-inflammation diet, but am curious about your whole 30 plan and will research.
I actually liked it right away. Yogurt and orange juice is very refreshing and cilantro is a minor taste in my concoction.
Liked by MariannJ
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!
Soaking in the pool? I have a pool, but haven’t been in it since early July, when it was only on my sides. I was afraid it would make things worse. I will have my little granddaughter this weekend, maybe I’ll get in it!! I have read about bleach baths, but scared to try that😳
I hope I can find something that works for me, because it is so hard going to work everyday. I have an hour commute to work each way, and I live in south ga. Half way through the day, I am extra miserable. I keep reminding myself that things could be much worse…
I have clobetasol liquid, maybe I’ll try that on my skin. It got rid of what was on my scalp. I don’t like the greasy stuff.
Thanks for your encouragement 😊
About the p-nut butter. Peanuts aren't allowed on any anti-inflammation diet. This is a ground nut that contains mold. Mold leads to yeast issues and yeast raised inflammation for all forms of eczema. I am sure McDonald's doesn't use p-nut oil because of this common allergy, but they may use soybean oil. Soy in any form is another food not allowed on anti-inflammation diets, it also can feed the yeast. One can't help but wonder if the woman posting on Facebook about her remission had results based on stopping certain foods or if she was at the end of her breakout period.
Not a good sign for me with GD, my lower back torso is starting to itch again. Still nothing visible other than the few scabs from last March that simply won't leave. I am making it a point to wear loose dresses as contact clothing doesn't feel good. The rest of my torso is just fine. I have been abusive, working in 90 degree weather, almost got heat stroke the other day. Yet, big cool down today and back outside.
Liked by kimass1, MariannJ
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.
Liked by gardeningjunkie, kimass1
I actually work in Valdosta! Small world. I live in Tifton now, but lived in Lake Park for 20 years.
I eat pretty healthy, rarely eat sugar or red meat. I do eat chicken and fish. I need to look into the diet you referred to. I am naturally ( genetically) slim and tall.
Yes, I was referring to my lady parts (mainly only on the front as of now). Also my butt is covered.
You guys are all so helpful on here!
Liked by gardeningjunkie, kimass1, MariannJ, sabrina2
That’s what I will do. Call and bug the stew out of them! I’m so glad yours cleared back up!!
Liked by gardeningjunkie, kimass1, MariannJ
Thank you for sharing I jus got diagnosed.. I do t itch but these spots are everywhere!! Photo therapy in two weeks let’s see
I’m also worried about foods? What to eat what not.. I have many allergies and afraid of cilantro.. any suggestions? I’m also vegan
Thanks for any help
Liked by gardeningjunkie, pen2015
I liked the reply MariannJ gave about being aggressive about getting help. I actually was suicidal and once I told my GP about how I lay there in my sleepless bed, in pain and itching and while unable to sleep I passed the time trying to figure out the cleanest ( I didn't want to leave a mess for my husband to clean up) surest and most painless way to end it all. She got me in within a week to see an allergist for the 5 Day Extended Patch Test for Allergic Contact Dermatitis, ACD. As MariannJ mentioned slept deprivation, a form of torture, makes one go crazy. I know I was a walking zombie and loosing my mind. Perhaps the GP felt if she didn't pull some strings she would be liable for not getting me in to see a specialist. She was connected with a large medical group, Cox, so she did have access to specialists in her group.
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