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?

Interested in more discussions like this? Go to the Skin Health Support Group.

To access a very informative post about all things Grover's, do the following.
(1) Join the "Grover's Disease Support Group" on Facebook
(2) Once a bona fide member of that group, click on the following link: https://www.facebook.com/groups/2434702380189797/posts/3546450875681603/

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I've found something topical that seems to help me. Hypochlorous acid.
Don't let the name of it scare you off immediately. It's in all sorts of wound washes and even some eyelid washes. Concentration matters as to whether it is harmful, effective, etc.,. And if you research a bit, you'll see there are ways to make your own and control the concentration for a lot less $$ than the packaged medical washes. Just read ingredients carefully and avoid getting this stuff in your eyes or ingest it. It does degrade over time... there is a shelf life, so being able to make your own when needed is a real plus. And the stuff makes a great general cleaner too. It does smell bleachy, but no, it is not just bleach water.
Anyway, if I spray some HA on a Grover's spot, the spot goes away faster and with less itching. Spray it on and let it dry there. Don't wipe or rinse.
Gotta wonder if some sort of fungal infection is tagging along with my autoimmune Grover's, as HA is antifungal as well as antibacterial. I'm gonna try it on that one toe that's had an off-and-on fungal problem for decades.

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@angel12345

I've found something topical that seems to help me. Hypochlorous acid.
Don't let the name of it scare you off immediately. It's in all sorts of wound washes and even some eyelid washes. Concentration matters as to whether it is harmful, effective, etc.,. And if you research a bit, you'll see there are ways to make your own and control the concentration for a lot less $$ than the packaged medical washes. Just read ingredients carefully and avoid getting this stuff in your eyes or ingest it. It does degrade over time... there is a shelf life, so being able to make your own when needed is a real plus. And the stuff makes a great general cleaner too. It does smell bleachy, but no, it is not just bleach water.
Anyway, if I spray some HA on a Grover's spot, the spot goes away faster and with less itching. Spray it on and let it dry there. Don't wipe or rinse.
Gotta wonder if some sort of fungal infection is tagging along with my autoimmune Grover's, as HA is antifungal as well as antibacterial. I'm gonna try it on that one toe that's had an off-and-on fungal problem for decades.

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Hypochlorous acid is anti-bacterial, anti-viral, and anti-fungal. It is similar to bleach but is more effective as a sanitizer and is non-toxic. It is used in the treatment of eczema, in wound healing, and in the sanitizing of piercings and tattoos. It saw wide usage in sanitation during the Covid pandemic. This link is informative, I found: https://www.watter.nl/en/hocl/

By the way, Grover's is not an autoimmune disease, but a disease of genetic aging and mutation.

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@gardeningjunkie

I don't know your circumstances pertaining to your access to fresh cilantro, but most grocery stores have home delivery. I also learned how to keep it fresh for at least 6 days in the frig and if I bought excess I would wash, dry and place in indiviual portions in the freezer, the fresh frozen worked just as well for me. Sometimes cilantro can look tired even in the best of grocery stores, but even with home delivery I image you could get a refund if you find it unacceptable.
If you are concerned about heavy metals in your blood based on your chemo, perhaps your insurance will justify medical blood chelation to remove heavy metals by filtering your blood.
The theory is that cilantro and other herbs can remove heavy metals, but perhaps there is also something else in these herbs helping some of us go into remission.

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Would you be willing to post (or re-post) the protocol that you use for ingesting cilantro? I’ve had a hard time finding the original post that talks about how often and how much to eat. Also, is there any research that supports this? I’m willing to try anything, as I’m really miserable.

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@bjwilliams

To access a very informative post about all things Grover's, do the following.
(1) Join the "Grover's Disease Support Group" on Facebook
(2) Once a bona fide member of that group, click on the following link: https://www.facebook.com/groups/2434702380189797/posts/3546450875681603/

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I've read comments from others that the Facebook GD site is very active having many more contributers than this site.
I haven't searched the GD site because cilantro has had my GD arrested for almost 4 years now.

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@gigic

Would you be willing to post (or re-post) the protocol that you use for ingesting cilantro? I’ve had a hard time finding the original post that talks about how often and how much to eat. Also, is there any research that supports this? I’m willing to try anything, as I’m really miserable.

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Most of us that tried cilantro oil tablets or cilantro oil drops had little success. Since there is no prescibed amount we all just winged it, what I did successfully was to use fresh or fresh frozen cilantro. I used about 1/2 bunch stems and leaves blended in a blender, daily for 6 months because I was so successful I was afraid to go off of it. Most just experimented for 3 months, learning if it helped and then stopped either way. Also most of us that get a twing, the feeling of little bumps returning under our skin and strange skin sensations resume the cilantro for a few days and in my case the bumps (never breaking the skin) disappear.
I was only about 1 month into a recurring breakout when I learned about cilantro and after drinking for about 3 weeks. I notice the severity of this recent breakout was stalled and by 6 weeks I was sure I was healing. Still it took 2 months to feel confident it was working. After my initial GD breakout, 1 year, horrible all over front and back torso, upper and lower, my subsequent pattern was 6 months of activity and 6 months of dormancy and that went on for over 4 years I learne about cilantro. After my first year none of the subsequent breakouts were quite as severe as the inital breakout, the difference being my upper front and back torsos were not solid with papuales, I had spaces between them. Yet the lower torsos were just as bad as the first year. The misery was extreme.
Initially I would add fresh fruit, probiotic yogurt, raw egg, almond milk and add the cilantro. I kept thinking I would get used to the flavor of cilantro. I never did. If I'm doing a cilantro maintenance I now prefer to make my morning smoothy without the cilantro and remove the smoothly, put in cilantro an about a half cup of water, blend and chug down this tonic without breathing and this way I don't notice the taste.
Search the web for infomation about home chelations for heavy metals. There is also information about heavy metals tied to Alzeheimers, Parkinson's and GD, but not a lot. I found several sites, so give it a try. There are no studies tieing in heavy metals to GD that I found, but you understand no pharmacutical company is motived to research this because their is no money in it for them.
Many use the Facebook GD site and I wonder if they have researched cilantro with GD. The Earthclinic GD site is the intial source of testimonials that Kimass1 read and shared this Earthclinic site link information with us on Mayo back mid-Feb. 2019.

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@gardeningjunkie

Most of us that tried cilantro oil tablets or cilantro oil drops had little success. Since there is no prescibed amount we all just winged it, what I did successfully was to use fresh or fresh frozen cilantro. I used about 1/2 bunch stems and leaves blended in a blender, daily for 6 months because I was so successful I was afraid to go off of it. Most just experimented for 3 months, learning if it helped and then stopped either way. Also most of us that get a twing, the feeling of little bumps returning under our skin and strange skin sensations resume the cilantro for a few days and in my case the bumps (never breaking the skin) disappear.
I was only about 1 month into a recurring breakout when I learned about cilantro and after drinking for about 3 weeks. I notice the severity of this recent breakout was stalled and by 6 weeks I was sure I was healing. Still it took 2 months to feel confident it was working. After my initial GD breakout, 1 year, horrible all over front and back torso, upper and lower, my subsequent pattern was 6 months of activity and 6 months of dormancy and that went on for over 4 years I learne about cilantro. After my first year none of the subsequent breakouts were quite as severe as the inital breakout, the difference being my upper front and back torsos were not solid with papuales, I had spaces between them. Yet the lower torsos were just as bad as the first year. The misery was extreme.
Initially I would add fresh fruit, probiotic yogurt, raw egg, almond milk and add the cilantro. I kept thinking I would get used to the flavor of cilantro. I never did. If I'm doing a cilantro maintenance I now prefer to make my morning smoothy without the cilantro and remove the smoothly, put in cilantro an about a half cup of water, blend and chug down this tonic without breathing and this way I don't notice the taste.
Search the web for infomation about home chelations for heavy metals. There is also information about heavy metals tied to Alzeheimers, Parkinson's and GD, but not a lot. I found several sites, so give it a try. There are no studies tieing in heavy metals to GD that I found, but you understand no pharmacutical company is motived to research this because their is no money in it for them.
Many use the Facebook GD site and I wonder if they have researched cilantro with GD. The Earthclinic GD site is the intial source of testimonials that Kimass1 read and shared this Earthclinic site link information with us on Mayo back mid-Feb. 2019.

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I am putting this out to the GD population in general. Gardeningjunckie is probably the single most knowledgeable person on the subject of this miserable disease around. I have had GD for about 5 or 6 years now and a day does not go by when I don't read what is said on this site. I am incredibly thankful for her knowledge and insight about this disease we all suffer from. I did fresh frozen Cilantro for about 2 years and the itching stopped. It resurfaced about 1 1/2 years ago but only minor, intermittent outbreaks. I am lazy by nature and decided to try the Cilantro oil instead of going through the process of preparing the herb and choking it down in a fruit smoothie. I have been using it since my last outbreak, and in all honesty, I don't think it's as effective as fresh frozen. My outbreak is small, and I manage the itching with ice, which I find very effective, so I continue with the oil hoping it will eventually rid me of any symptoms. On the other hand, I may just go back to the fresh, frozen in an attempt to finally be rid the symptoms entirely. My hat is off to gardeningjunckie for her incredible transparency, and all the research she has done. For my money, she far and away is the best resource about GD there is. Thank you again for all that you do for all of us.

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@gardeningjunkie

Most of us that tried cilantro oil tablets or cilantro oil drops had little success. Since there is no prescibed amount we all just winged it, what I did successfully was to use fresh or fresh frozen cilantro. I used about 1/2 bunch stems and leaves blended in a blender, daily for 6 months because I was so successful I was afraid to go off of it. Most just experimented for 3 months, learning if it helped and then stopped either way. Also most of us that get a twing, the feeling of little bumps returning under our skin and strange skin sensations resume the cilantro for a few days and in my case the bumps (never breaking the skin) disappear.
I was only about 1 month into a recurring breakout when I learned about cilantro and after drinking for about 3 weeks. I notice the severity of this recent breakout was stalled and by 6 weeks I was sure I was healing. Still it took 2 months to feel confident it was working. After my initial GD breakout, 1 year, horrible all over front and back torso, upper and lower, my subsequent pattern was 6 months of activity and 6 months of dormancy and that went on for over 4 years I learne about cilantro. After my first year none of the subsequent breakouts were quite as severe as the inital breakout, the difference being my upper front and back torsos were not solid with papuales, I had spaces between them. Yet the lower torsos were just as bad as the first year. The misery was extreme.
Initially I would add fresh fruit, probiotic yogurt, raw egg, almond milk and add the cilantro. I kept thinking I would get used to the flavor of cilantro. I never did. If I'm doing a cilantro maintenance I now prefer to make my morning smoothy without the cilantro and remove the smoothly, put in cilantro an about a half cup of water, blend and chug down this tonic without breathing and this way I don't notice the taste.
Search the web for infomation about home chelations for heavy metals. There is also information about heavy metals tied to Alzeheimers, Parkinson's and GD, but not a lot. I found several sites, so give it a try. There are no studies tieing in heavy metals to GD that I found, but you understand no pharmacutical company is motived to research this because their is no money in it for them.
Many use the Facebook GD site and I wonder if they have researched cilantro with GD. The Earthclinic GD site is the intial source of testimonials that Kimass1 read and shared this Earthclinic site link information with us on Mayo back mid-Feb. 2019.

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Thank you very much! I did my first cilantro “shot” today. 1/2 bunch blended with a bit of water. It didn’t bother me at all. I don’t mind cilantro and I’ll try anything at this point! I bought several bunches and froze it. I’m very excited to have something to try. I’ve been miserable and searching for help and answers. I’m grateful for all the informative, helpful posts you have made. I’ve been reading through all the posts and it’s great to know there is a community of people trying to help one another. I requested to join the FB group and checked out Earthclinic site as well. I’m so glad to hear that you are feeling better after your last breakout. Thank you again for taking time to write. All the best.

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@nodgabnoj

I am putting this out to the GD population in general. Gardeningjunckie is probably the single most knowledgeable person on the subject of this miserable disease around. I have had GD for about 5 or 6 years now and a day does not go by when I don't read what is said on this site. I am incredibly thankful for her knowledge and insight about this disease we all suffer from. I did fresh frozen Cilantro for about 2 years and the itching stopped. It resurfaced about 1 1/2 years ago but only minor, intermittent outbreaks. I am lazy by nature and decided to try the Cilantro oil instead of going through the process of preparing the herb and choking it down in a fruit smoothie. I have been using it since my last outbreak, and in all honesty, I don't think it's as effective as fresh frozen. My outbreak is small, and I manage the itching with ice, which I find very effective, so I continue with the oil hoping it will eventually rid me of any symptoms. On the other hand, I may just go back to the fresh, frozen in an attempt to finally be rid the symptoms entirely. My hat is off to gardeningjunckie for her incredible transparency, and all the research she has done. For my money, she far and away is the best resource about GD there is. Thank you again for all that you do for all of us.

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Nodjabnoj, you are so kind and we as fellow GD sufferers can relate to each other like those that have never lived with GD suffering 24/7 for months or years cannot. We are soulmates.
I am glad to hear that your outbreaks are lessoning in severity.
In spite of us accepting this disease we both searched for alternative therapys since medical professionals had nothing to help us.
We are both the lucky ones that cilantro has helped. Your testimonial gives hope to gigic and I want so much for this to help gigic and I hope she (he) follows though with this herbal treatment and gets relief. Also hoping we get updates on her condition.

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@coreylynn

So nice of you to share all this information. I will look into this and educate myself on these injections. Currently i am trying so many creams. I always like to go the holistic road however as of now no relief. Happy you are feeling better! May you stay itch free!!!

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I’ve been dealing w/Grovers for over 2 years. & have tried various creams & medicines.

My latest success is coconut oil. My skin feels so smooth.

I use Gabapentin if it gets super itchy & wean myself off after the flare up is under control.

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