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

Posted by 43219876x @43219876x, Sep 23, 2016

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?

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@gardeningjunkie

As mentioned your input has been most inspiring to me. Even with good results my determination was starting to waver. I didn't mention I couldn't resist and ate an oatmeal cookie a few days ago- that's after almost 3 weeks of diligently following my no sugar plan and 1/2 a year of following low gluten plan. I had read the revered Karen Fischer books on eczema years ago and resisted attempting to follow her strict dietary plan. A month ago I picked up a used book, The Yeast Connection Handbook by William G Crook, MD written 20 years ago. Very simply written for the layperson. For once an author got my attention. I think it was the simple hand draw illustrations and graphs of what the wrong foods are doing to us that woke me up. The lights came on. On the cover it purports, How Yeasts Can Make You Feel "Sick All Over" and the Steps You Need to take to Regain Your Health. In the book it also refers to the cross over with eczema which is an inflammatory condition and we both know how this inflammation can be torture and how we need to lower our inflammation. Yeasts in the body create inflammation, not sure how the yeasts are related to the histamines, but perhaps our histamines are trying to kill the yeasts and so inflammation occurs. Although written decades ago it has an addendum, 2006, with updated research, referencing studied herbal treatments that have been amazing and he documents. Actually doing as well as PX Diflucan. So daily I added oregano, either fresh from the garden and/or oregano oil capsule , caprylic acid capsule, kolorex capsule. My go to breakfast now is a smoothie with kefir (dairy) or probiotic plain yogurt (dairy), almond milk plain, carrot (the big carrots have all the flavor), cucumber or zucchini and fresh oregano from garden with a pinch or 2 of Stevia (only allowed artificial sweetener). I don't think I could enjoy this without some sweetener. Very drinkable along with 2 poached eggs. I tried adding kale to the smoothie- the #1 choice for benefits, yet I couldn't gag it down. I like it cooked with garlic and olive oil, but it takes a stronger will than mine to gag it down in a smoothie.
As mentioned, according to Dr. Crook (egad, what a name!) if this plan is followed for 2 months we can slowing add back occasion sugars, like you are doing now.
As mentioned, I am Grover's free right now. My Grover's was so bad I couldn't lay on my back, even driving a car i had to hunch over the steering wheel which is very fatiguing, but any pressure or friction was intensely painful. Yes my Grover's was itchy, but not as itchy as say my ACD issues on hands, yet Grover's is extremely painful. It would hurt even without pressure. Even in remission before I could always feel tiny bumps under my skin, yet now while still there, they are barely discernible. I can even take a hot shower again. Also gone is the constant feeling of having a bad sunburn on my back. My front torso was only moderately affected and never had anything on my sides, so that is how I could lay down. I would dread anyone wanting a hug, it just hurt too much!
A blessing is that I could hide it with clothing, so few new I had it.
Still I amazed at your strength, as I can't imagine dealing with it for 8 years; I would have lost my mind. I do get emotional and I am weeping for you now, and so hope you have a nice long break from your suffering. I know you are treasuring each day. They say if something doesn't kill us it will make us stronger and I know I am more compassionate, humble and grateful everyday and can't see that changing.

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Hi…new to this page and GD…I have picked a couple of the scabs and it appears white gel comes out…feels like a small bug….I also get bumps head to toe and in privates….feels like bugs crawling around…yuck…biopsy said GD…. Is this normal to have gunk under the scans and crawling itching in privates….sorry for tmi

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@debclark15

Hi…new to this page and GD…I have picked a couple of the scabs and it appears white gel comes out…feels like a small bug….I also get bumps head to toe and in privates….feels like bugs crawling around…yuck…biopsy said GD…. Is this normal to have gunk under the scans and crawling itching in privates….sorry for tmi

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I've never heard or read about GD in your privates. Where was your biopsy taken from- torso, legs, privates?
You could be like me and others and have multiple forms of eczema. My Allergic Contact Dermatiis affected various parts of my body, not just outside with itchy rashes and red welts but inside with random crawling, lazer like stinging every 15 seconds, worse at night. I was going crazy from lack of sleep, ready to end it all. My 5 Day Extended Patch Test identified my allergens and I am dilignet, a real challenge because I have so many, but I conrol my diet, enviroment and contacts and am free of symtoms.
My GD papuales never got infected. Is the white gel pus? You could have pustuales, infected papuales. Witch Hazel is mildly antibacterial, try splashing with at the end of your shower. I had classic GD, front and back torso from the neck to about my pubic hair or butt crack. My intial outbreak lasted one year. As I have mentioned, my cilantro smoothies and diet change have kept me clear since mid 2019, and I do drink just plain cilantro now at least 2-3 days about every 2-3 weeks. I don't like the taste, not much can be done to improve it so I just blend it with water and chug it down without breathing. Hardly notice the taste that way.
So very sorry for your suffering. I understand and you must keep searching. This chelates the blood, removing heavy metals, and helps about 40% of those I blog with.
See multiple dermatologists and keep blogging on this site and others. I've learned so much from others.

Wash with a lard and lye soap like Grandma's. The lye is converted to glycerin so all you contact is lard and glycerin.
Have you had testing for other forms?
I didn't get bumps, just redness and swelling and I didn't get a crawling feeling. In my private part I did have intense burning and itching. What helped after years of dealing with that was giving up processed sugar and the Estring is a silicone ring of time released estrogen. I am allergic the inactive ingredients in all vaginally inserted estrogen foams or creams and at my age doctors don't want to prescribe estrogen tablets. This silicone ring has restored my vaginal health, rebuilt my tissues. So diet and localized estrogen have been a miracle for me.

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@gardeningjunkie

I've never heard or read about GD in your privates. Where was your biopsy taken from- torso, legs, privates?
You could be like me and others and have multiple forms of eczema. My Allergic Contact Dermatiis affected various parts of my body, not just outside with itchy rashes and red welts but inside with random crawling, lazer like stinging every 15 seconds, worse at night. I was going crazy from lack of sleep, ready to end it all. My 5 Day Extended Patch Test identified my allergens and I am dilignet, a real challenge because I have so many, but I conrol my diet, enviroment and contacts and am free of symtoms.
My GD papuales never got infected. Is the white gel pus? You could have pustuales, infected papuales. Witch Hazel is mildly antibacterial, try splashing with at the end of your shower. I had classic GD, front and back torso from the neck to about my pubic hair or butt crack. My intial outbreak lasted one year. As I have mentioned, my cilantro smoothies and diet change have kept me clear since mid 2019, and I do drink just plain cilantro now at least 2-3 days about every 2-3 weeks. I don't like the taste, not much can be done to improve it so I just blend it with water and chug it down without breathing. Hardly notice the taste that way.
So very sorry for your suffering. I understand and you must keep searching. This chelates the blood, removing heavy metals, and helps about 40% of those I blog with.
See multiple dermatologists and keep blogging on this site and others. I've learned so much from others.

Wash with a lard and lye soap like Grandma's. The lye is converted to glycerin so all you contact is lard and glycerin.
Have you had testing for other forms?
I didn't get bumps, just redness and swelling and I didn't get a crawling feeling. In my private part I did have intense burning and itching. What helped after years of dealing with that was giving up processed sugar and the Estring is a silicone ring of time released estrogen. I am allergic the inactive ingredients in all vaginally inserted estrogen foams or creams and at my age doctors don't want to prescribe estrogen tablets. This silicone ring has restored my vaginal health, rebuilt my tissues. So diet and localized estrogen have been a miracle for me.

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Thank you for your response….the white gel is more like a small hard but also soft zit or whitehead….thought it was a bug coming out…and the itching made me think it was a parasite although the biopsy on my chest came back as GD….beta steroid has helped a lot…and bumps subsiding in my private area…read the itching could be yeast in the vulvar area hence the crawling feeling….seeing my derm again tomorrow and will run this by her…so glad to have found this site..so informative…I too get the zaps around the body….was more when I had the raised bumps on my back…like I am being poked by a voodoo doll🥴🥴🥴 steroids cleared the bumps up nicely….just need the itching to stop! Taking Vitamin A and D helps too….love cilantro….an excuse for salsa more now! Thanks again!

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@debclark15

Thank you for your response….the white gel is more like a small hard but also soft zit or whitehead….thought it was a bug coming out…and the itching made me think it was a parasite although the biopsy on my chest came back as GD….beta steroid has helped a lot…and bumps subsiding in my private area…read the itching could be yeast in the vulvar area hence the crawling feeling….seeing my derm again tomorrow and will run this by her…so glad to have found this site..so informative…I too get the zaps around the body….was more when I had the raised bumps on my back…like I am being poked by a voodoo doll🥴🥴🥴 steroids cleared the bumps up nicely….just need the itching to stop! Taking Vitamin A and D helps too….love cilantro….an excuse for salsa more now! Thanks again!

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Also heat is a big trigger and it’s been 110 and over for 50 days here in Az….ugh

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I’m really at wits end with my GD. Cilantro smoothie not helping. Going to try quercitin supplements now after everything else has failed. It’s been over 2 years

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I agree about the heat, but I would also have my recurring GD breakouts start in late winter. Heat does intensify
the misery.
Steroids- with my hand eczema steroids worked fast in relieving my itching and the rash would subside within a week. At that time I didn't understand that steroids were only a treatment, they are not a cure and won't prevent recurrances. Steroids cause skin thinning and hair loss and other negative side effects, bewary using them and only as prescribed. Like antibiotics you must use topical steroids full course of what the doctor prescribed- usually about 10 day. I would improve within days, but continue or like antibiotics used for too short a period of time they won't work for you in the futre.
The chronic cycle of rash- rash develops, steroid, remission and then the return of the rash. In the case of my ACD rash I learned from patch testing the causes and the major cause was my cleaning products containing Mercaptbenzothiazole, MBT, a preservative banned for a decade in many european countries. I used Dawn dish soap and surprisingly Dawn still puts it in today, the shelf life of their dish soap is 100 years plus. Why? It doesn't help clean. Cheaper for the company, no product loss. Many American products now ban MBT. I mentioned diet change and hormones to control the burning in my privates, but another contributor caused by our FDA and congress being influenced by chemical lobby groups was my Cottenelle person wipes which are used on babys or adults wiping anal areas. At that time they contained MBT. I have the box to prove it. It took me a while to figure out it was the wipes. I believe I personally helped get MBT removed from these wipes because I wrote up my issues, copy of Patch Test results, documenting my reaction and current information about this powerful preservative affecting others. They responded offered to pay me for the box I had been using. I declined this "generous" offer, but months after that I noticed this preservative was no longer in their product. Of course I will never use any product in this area to clean with other than water and a castile soap free of perfume, dyes or preservatives like Grandma's bar soap. A side note, years earlier I'd pick up my baby grandson for the weekend and he would have a terrible diaper rash. I didn't use the baby wipes but simply soft cotton wash clothes to wipe his bottom and also put him in the sun for 15 or less minutes. After a few days his bottom would look better, only for it to have returned when I saw him next. I am certain he has the same allergy to MBT, but it never occured to me at that time it was the baby wipes his nursery and parents used.
Steroids are a necessary evil, but without them I would have gone crazy with my inside skin issues we discussed. What kept me from loosing my mind was Kenalog 40 Cortico-Steroid injections. It would last for 1 year, which was all the dermatologist felt was safe. Some are forced to do it more frequently. It's powerful, but within 3 days most of the zapping, burning and stinging was gone and it would last about 9 months before it would slowly work it's way up again. It did cause hair thinning.
I was able to discontinue these shots after getting them for 3 years years because of 1. diet change- following Dr. William Crooke's book, The Yeast Connection Handbook and doing his detox for 3 full months no cheating, Aso for 6 months his maintanence diet, after that giving up processed sugar for life but have resumed all carbs and fructose in fresh fruit. 2. Cilantro- 1/2 bunch a day blended for 5 months and now only occasionally. 3. Patch testing to determine my allergen's to avoid.
But what helped what forms- avoiding my allergen's did nothing to help with GD, but definately helped stop my ACD rashes and slowly stopped my internal inflamation a part of the reason I didn't need my Kenalog-40 Cortico Steroid shot. Giving up sugar helped my ACD and possibly my GD as I gave it up 6 months before my annual steroid shot was needed. Cilantro definately helped put GD in remission within a few months, but I had also been off sugar for over six months. I don't think the steroids shot helped with the GD, except my outbreaks cycle was 6 months of activity and 6 months of dormacy, a common cycle which may have been unrelated. For me the initial GD outbreak lasted one full year. The steroid shot most definately controlled my internal skin issues.
No more steroids, shots or topicals for me since December 2018.

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@itchyandscratchy

I’m really at wits end with my GD. Cilantro smoothie not helping. Going to try quercitin supplements now after everything else has failed. It’s been over 2 years

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Unfortunately, as you probably know, there is no cure for this miserable disease. I have found that ice packs on the areas that itch are very effective. I leave them on for as long as possible and the itching subsides for fairly long periods of time.

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@gardeningjunkie

I agree about the heat, but I would also have my recurring GD breakouts start in late winter. Heat does intensify
the misery.
Steroids- with my hand eczema steroids worked fast in relieving my itching and the rash would subside within a week. At that time I didn't understand that steroids were only a treatment, they are not a cure and won't prevent recurrances. Steroids cause skin thinning and hair loss and other negative side effects, bewary using them and only as prescribed. Like antibiotics you must use topical steroids full course of what the doctor prescribed- usually about 10 day. I would improve within days, but continue or like antibiotics used for too short a period of time they won't work for you in the futre.
The chronic cycle of rash- rash develops, steroid, remission and then the return of the rash. In the case of my ACD rash I learned from patch testing the causes and the major cause was my cleaning products containing Mercaptbenzothiazole, MBT, a preservative banned for a decade in many european countries. I used Dawn dish soap and surprisingly Dawn still puts it in today, the shelf life of their dish soap is 100 years plus. Why? It doesn't help clean. Cheaper for the company, no product loss. Many American products now ban MBT. I mentioned diet change and hormones to control the burning in my privates, but another contributor caused by our FDA and congress being influenced by chemical lobby groups was my Cottenelle person wipes which are used on babys or adults wiping anal areas. At that time they contained MBT. I have the box to prove it. It took me a while to figure out it was the wipes. I believe I personally helped get MBT removed from these wipes because I wrote up my issues, copy of Patch Test results, documenting my reaction and current information about this powerful preservative affecting others. They responded offered to pay me for the box I had been using. I declined this "generous" offer, but months after that I noticed this preservative was no longer in their product. Of course I will never use any product in this area to clean with other than water and a castile soap free of perfume, dyes or preservatives like Grandma's bar soap. A side note, years earlier I'd pick up my baby grandson for the weekend and he would have a terrible diaper rash. I didn't use the baby wipes but simply soft cotton wash clothes to wipe his bottom and also put him in the sun for 15 or less minutes. After a few days his bottom would look better, only for it to have returned when I saw him next. I am certain he has the same allergy to MBT, but it never occured to me at that time it was the baby wipes his nursery and parents used.
Steroids are a necessary evil, but without them I would have gone crazy with my inside skin issues we discussed. What kept me from loosing my mind was Kenalog 40 Cortico-Steroid injections. It would last for 1 year, which was all the dermatologist felt was safe. Some are forced to do it more frequently. It's powerful, but within 3 days most of the zapping, burning and stinging was gone and it would last about 9 months before it would slowly work it's way up again. It did cause hair thinning.
I was able to discontinue these shots after getting them for 3 years years because of 1. diet change- following Dr. William Crooke's book, The Yeast Connection Handbook and doing his detox for 3 full months no cheating, Aso for 6 months his maintanence diet, after that giving up processed sugar for life but have resumed all carbs and fructose in fresh fruit. 2. Cilantro- 1/2 bunch a day blended for 5 months and now only occasionally. 3. Patch testing to determine my allergen's to avoid.
But what helped what forms- avoiding my allergen's did nothing to help with GD, but definately helped stop my ACD rashes and slowly stopped my internal inflamation a part of the reason I didn't need my Kenalog-40 Cortico Steroid shot. Giving up sugar helped my ACD and possibly my GD as I gave it up 6 months before my annual steroid shot was needed. Cilantro definately helped put GD in remission within a few months, but I had also been off sugar for over six months. I don't think the steroids shot helped with the GD, except my outbreaks cycle was 6 months of activity and 6 months of dormacy, a common cycle which may have been unrelated. For me the initial GD outbreak lasted one full year. The steroid shot most definately controlled my internal skin issues.
No more steroids, shots or topicals for me since December 2018.

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You have definitely become the "God Mother" of all us GD sufferers !!!

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That's a crown I wish I didn't wear, but since I've had success and understand the misery of this disease I have great sympathy for those suffering. Maybe what helped me can help others Also I like to keep up to date, this disease is considered chronic and at some future date my symtoms may return.

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@elderly1

try liberal covering with OTC Witch Hazel solution twice daily; took ~ one week to clear & I struggled for years. hope it helps you too!

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Thank you, 6 months now and nothing really working. I will try witch hazel! Why not??

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