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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@joycehan

Would someone share their cilantro smoothies recipe?

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Hi, I buy several bunches of organic fresh cilantro, wash then separate them into bunches equaling roughly 1 cup packed cilantro and freeze them in individual sandwich bags. Each day, I blend a bag of frozen cilantro with about 1/2 cup cold water, then drink it quickly. I prefer drinking it in a few seconds, to making a bigger smoothie with other ingredients like fruit. After about 3 weeks, I felt improvement in my rash. It was pretty dramatic for me. I’m still in awe and full of gratitude that I found something that helps. I was so, so miserable before. I actually love drinking my cilantro smoothies since they helped me so much. Don’t get me wrong, I gulp it down as it’s like drinking blended grass. Haha. I now also add 1 scoop Athletic greens vitamin powder to my smoothie, since I was taking that anyway and it’s easier to take them together. I find it improves the taste a little. Hopefully others will share their recipes. I know some people added yogurt and fruit and drank a bigger smoothie and that worked for them

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@joycehan

Would someone share their cilantro smoothies recipe?

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Frozen Cilantro, some sort of juice, a mix of fruit including bananas, possibly some yogurt, apple cider vinegar (a personal choice, not really necessary) all in a blender. Blend it well. I also put in an ice cube which made it much easier to drink.

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@gigic

Hi, I buy several bunches of organic fresh cilantro, wash then separate them into bunches equaling roughly 1 cup packed cilantro and freeze them in individual sandwich bags. Each day, I blend a bag of frozen cilantro with about 1/2 cup cold water, then drink it quickly. I prefer drinking it in a few seconds, to making a bigger smoothie with other ingredients like fruit. After about 3 weeks, I felt improvement in my rash. It was pretty dramatic for me. I’m still in awe and full of gratitude that I found something that helps. I was so, so miserable before. I actually love drinking my cilantro smoothies since they helped me so much. Don’t get me wrong, I gulp it down as it’s like drinking blended grass. Haha. I now also add 1 scoop Athletic greens vitamin powder to my smoothie, since I was taking that anyway and it’s easier to take them together. I find it improves the taste a little. Hopefully others will share their recipes. I know some people added yogurt and fruit and drank a bigger smoothie and that worked for them

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Thank you Gigic! I’m going out to buy cilantro today.

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Hi, I buy 8 large bunch of cilantro, blend them in my food processor with approximately half a couple of water. I scoop all of the blended cilantro into silicone cupcake holders and freeze them. Once frozen I pop the cilantro cupcake discs out and put them into a ziploc bag . It makes approximately 24 cilantro discs. Each night I put one cilantro discs in a juice glass with a half cup of water and let it melt. Once melted I chug it.

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@jaffsa

Hi, I buy 8 large bunch of cilantro, blend them in my food processor with approximately half a couple of water. I scoop all of the blended cilantro into silicone cupcake holders and freeze them. Once frozen I pop the cilantro cupcake discs out and put them into a ziploc bag . It makes approximately 24 cilantro discs. Each night I put one cilantro discs in a juice glass with a half cup of water and let it melt. Once melted I chug it.

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Hi @jaffsa, your recipe is so efficient. I need to try it! Would you mind sharing how long you’ve been drinking cilantro smoothies and a little about your Grover’s journey? Has cilantro been helpful? I’m curious about how long others have been ingesting it, and how long they plan to continue. Right now, I just want to keep going, but will I do this for the rest of my life? I will if it means I keep Grover’s at bay.

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@gigic

Hi @jaffsa, your recipe is so efficient. I need to try it! Would you mind sharing how long you’ve been drinking cilantro smoothies and a little about your Grover’s journey? Has cilantro been helpful? I’m curious about how long others have been ingesting it, and how long they plan to continue. Right now, I just want to keep going, but will I do this for the rest of my life? I will if it means I keep Grover’s at bay.

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Hi, Sure, no problem. I was just diagnosed with Grover's disease approximately the 2nd quarter of 2023, however I've had it for approximately 20 years. I lived in San Diego for 13 years. While living in San Diego I was diagnosed with Heat rash, also called: Miliaria. It was in a small part of my left shoulder blade and treated with clobetesol. The clobetesol would temporarily relieve it, but it always came back. Fast forward, I moved to Southwest Florida 7 1/2 years ago (2016) and was also diagnosed by a new dermatologist with Heat Rash/Miliaria. She also gave me clobetesol with temporary relief. In 2021 I got COVID. I got COVID again twice in 2022. Each time I got COVID, my rash got worse on my back and my dermatologist kept saying heat rash and prescribed clobetesol. In January my rash moved to my chest. My neurologist said I had shingles and gave me an anti viral. Within a week it continued to my stomach and thighs. I made another appointment with the dermatologist but saw a new PA in her office and she immediately said that looks like Grover's Disease and did a biopsy. The biopsy was positive. They tried to give me clobetesol again and I laughed. They gave me fluocinonide cream 0.5% which helped it from spreading but could only be on a short time, so they switched me to triamcinolone cream 0.1%. Again, it was a temporary fix and didn't get rid of my pain. I found a Facebook group for Grover's Disease and they led me to this page. Both pages spoke about vitamins, cilantro and chlorella. The vitamins that were mentioned were A, C, D, E, Zinc along with cilantro and chlorella. I started all the vitamins, chlorella pills and cilantro drops. The chlorella gave me horrible abdominal pain so I stopped immediately. I read this is a common side effect. I started to get small bloody noses that lasted 6 months. I went to my ENT and he said vitamin A vitamin E and fish oil are blood thinners. I was on fish oil prior to the other vitamins so I stopped all of those vitamins and my bloody noses disappeared. The cilantro oil drops helped but not as good as I hoped so I tried blending fresh cilantro with fruit in my daily smoothie and it was disgusting. All I could taste was cilantro. I got the idea on this page of blending the cilantro and doing shots with a half cup of water but wanted an efficient way, rather than doing it every day. That's when I blended as much as I could in my food processor and got 24 frozen cupcake cilantro discs. It last me close to a month. The first couple months I did it every night around 7pm because nighttime was worst pain. Now that it's a little cooler and I've taken the cilantro consistently for a few months I did skip a day here and there and it didn't affect me. My Grover's is triggered by sun and heat. I get up in Massachusetts and never had a problem. As soon as I moved to San Diego is when I got it. Now I live in hot/humid but beautiful Sarasota Florida. The summer will always be brutal for me and winter will be easier now that I have the cilantro. The cilantro has calmed my rash and taken away all the severe pain I was in. I had minimal itching, mine was more pain like little stinging all over. It was excruciating. I've read others had to drink cilantro for a year and it goes away then they just do maintenance once in a while. I guess it's different for everyone. I'm hoping mine goes away eventually but I have a feeling it won't since Ive had it so long. I hope I answered all your questions. I wish you the best!

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@jaffsa

Hi, Sure, no problem. I was just diagnosed with Grover's disease approximately the 2nd quarter of 2023, however I've had it for approximately 20 years. I lived in San Diego for 13 years. While living in San Diego I was diagnosed with Heat rash, also called: Miliaria. It was in a small part of my left shoulder blade and treated with clobetesol. The clobetesol would temporarily relieve it, but it always came back. Fast forward, I moved to Southwest Florida 7 1/2 years ago (2016) and was also diagnosed by a new dermatologist with Heat Rash/Miliaria. She also gave me clobetesol with temporary relief. In 2021 I got COVID. I got COVID again twice in 2022. Each time I got COVID, my rash got worse on my back and my dermatologist kept saying heat rash and prescribed clobetesol. In January my rash moved to my chest. My neurologist said I had shingles and gave me an anti viral. Within a week it continued to my stomach and thighs. I made another appointment with the dermatologist but saw a new PA in her office and she immediately said that looks like Grover's Disease and did a biopsy. The biopsy was positive. They tried to give me clobetesol again and I laughed. They gave me fluocinonide cream 0.5% which helped it from spreading but could only be on a short time, so they switched me to triamcinolone cream 0.1%. Again, it was a temporary fix and didn't get rid of my pain. I found a Facebook group for Grover's Disease and they led me to this page. Both pages spoke about vitamins, cilantro and chlorella. The vitamins that were mentioned were A, C, D, E, Zinc along with cilantro and chlorella. I started all the vitamins, chlorella pills and cilantro drops. The chlorella gave me horrible abdominal pain so I stopped immediately. I read this is a common side effect. I started to get small bloody noses that lasted 6 months. I went to my ENT and he said vitamin A vitamin E and fish oil are blood thinners. I was on fish oil prior to the other vitamins so I stopped all of those vitamins and my bloody noses disappeared. The cilantro oil drops helped but not as good as I hoped so I tried blending fresh cilantro with fruit in my daily smoothie and it was disgusting. All I could taste was cilantro. I got the idea on this page of blending the cilantro and doing shots with a half cup of water but wanted an efficient way, rather than doing it every day. That's when I blended as much as I could in my food processor and got 24 frozen cupcake cilantro discs. It last me close to a month. The first couple months I did it every night around 7pm because nighttime was worst pain. Now that it's a little cooler and I've taken the cilantro consistently for a few months I did skip a day here and there and it didn't affect me. My Grover's is triggered by sun and heat. I get up in Massachusetts and never had a problem. As soon as I moved to San Diego is when I got it. Now I live in hot/humid but beautiful Sarasota Florida. The summer will always be brutal for me and winter will be easier now that I have the cilantro. The cilantro has calmed my rash and taken away all the severe pain I was in. I had minimal itching, mine was more pain like little stinging all over. It was excruciating. I've read others had to drink cilantro for a year and it goes away then they just do maintenance once in a while. I guess it's different for everyone. I'm hoping mine goes away eventually but I have a feeling it won't since Ive had it so long. I hope I answered all your questions. I wish you the best!

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Thanks so much for your reply! I’m so happy to hear that the cilantro continues to help you. I went to Mexico for 10 days and took cilantro capsules, but near the end of my trip, my rash was re-emerging. The weather was cool, and I didn’t get into the sun much, or get hot and sweaty. I couldn’t wait to get home so I could start my smoothies again. I’m still dealing with the outbreak, but it’s not bad. The cilantro really calms my rash down!

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@gigic

Thanks so much for your reply! I’m so happy to hear that the cilantro continues to help you. I went to Mexico for 10 days and took cilantro capsules, but near the end of my trip, my rash was re-emerging. The weather was cool, and I didn’t get into the sun much, or get hot and sweaty. I couldn’t wait to get home so I could start my smoothies again. I’m still dealing with the outbreak, but it’s not bad. The cilantro really calms my rash down!

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That's great to hear the cilantro is working for you as well!

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Once again, I will emphasize that Cilantro, ice and Zostrix, have been incredibly helpful for me. I have also limited my sugar intake, which I believe may have helped as well. I still do Cilantro oil every day, but a bit more than the directions recommended.

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@gardeningjunkie

Just like with most forms of eczema we respond differently to treatments. We also seem to have variable triggers. We also have variations in symptoms, for example with GD some have mild itching, some have no pain and although the standard rash area is torso some also get it up the hair line or down the arms and legs. I have seen photos and even the rash papuales are not the same size for all of us.
Has a sugar free diet (which kills residual yeast residing in colon that raised the inflamation in your body) been tried? It definetly helped calm one of my other forms of eczema. The cilantro did work for me with GD, but I had also been on the sugar free diet for a year and perhaps that made a difference. It takes months to kill off all the yeast and yeast is easily resurrected if yeast fueling foods are reintroduced. Read The Yeast Connection Handbook by William Crook MD. Available on the internet, Amazon. Not complicated like the Karen Fischer diet for eczema and also the book is cheap compared to hers.
This diet calmed my internal skin so much I no longer required my annual corticosteroid shot to stop the relentless internal burning, zapping and stinging, yet it only helped for about 10 months before it would build up again and require the shot again. A treatment, not a solution.

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I have been told that the “internal burning” is fibro and not Grover’s since it’s happening where my Grover’s rash isn’t on my trunk. Can you explain what you mean by internal burning?

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