Hello! I'm new to this site. I'm still trying to navigate so I thought it would be easy to just reply to your post (not sure if others will see it here tho, I'm open to comments from others too). I've been dealing with Grovers for 10+ years, although I wasnt diagnosed until about 3 years ago. From what I have read, my condition seems pretty mild. I get my worst flare-ups in the winter. I live in Colorado which is very dry in the winter. Dryness seems to aggravate it...as well as other things. I have read about the cilantro shakes and I'm going to start trying that. I'm curious about heavy metal toxicity. If the shakes work due to the cilantro, has anyone tried more of a focused heavy metal detox instead of doing the shakes longterm? I have been on a gluten free, low sugar diet for about 8 years. Perhaps contributes to a milder case? I went completely dairy free about 6 months ago and noticed an improvement after that as well. I did just get a flare-up and so I'm exploring new options. I'm so tired of this and would love to kick it off permanently!
We have much in common, except for the severity of the GD outbreaks. Like you it was undiagnosed for years, dermatolgists assuming it was the Allergic Contact Dermatitis I had for voer 15 years. The cilantro put me into dormancy for over 2 years and in the last few months I have had a mild outbreak, same torso areas, but the itching and pain is tolerable. For 2 months have gone back on it as a daily routine and it seems my mild recurrance is simply stalled. My papuales are 5% in severity compared to past outbreaks. Yet why now after 2 years off.
Many say heat triggers GD, I do know heat makes it feel worse, but like you most my recurrances began in cooler dry weather, as Snowbirds spend our winter in Arizona. Ater the first outbreak of 1 full year the recurrances were every 6 months, then 6 months off, most beginning a few months after we got to dry AZ. I do believe friction triggers or in the very least severly aggravated my GD. We are off roaders, Jeeping and off roading in ATV's and that means the back in constantly pressed and rubbed against the seat. If I want to participate I must lean forward the entire time holding on to steering wheel or front hand bar if a passenger. Many seasons I had to give it up. I feel as if I am being dragged over a gravel road or rubbed with sandpaper, plus the papuales got more inflamed.
I've only been on a processed sugar free diet for 3 years now, this made a major change in my histamine levels and eliminated my internal stinging, zapping and burning which radiated all over inside my skin. Dairy free is a good idea, many in my family have this issue, so I simply try to keep it at a minimum but I do believe my pro-biotic, plain unsweetned yougut helps my gut. I do know if I've had too much dairy as I get gassy. Just a little is okay. Whey, even a small amount, will blow me up. Soybeans the same, yet I can tolerate other beans in moderation. The cilantro smoothie for me is no big deal. I didn't like how it made my yummy health smoothie taste bad, so now after removing the smoothie I put in my 1/2 bunch of cilantro, fresh or frozen, add about 1/3 cup of water and blend. Then chug. Easy.
Best of luck, you're trying to figure this out and keep at it.
We have much in common, except for the severity of the GD outbreaks. Like you it was undiagnosed for years, dermatolgists assuming it was the Allergic Contact Dermatitis I had for voer 15 years. The cilantro put me into dormancy for over 2 years and in the last few months I have had a mild outbreak, same torso areas, but the itching and pain is tolerable. For 2 months have gone back on it as a daily routine and it seems my mild recurrance is simply stalled. My papuales are 5% in severity compared to past outbreaks. Yet why now after 2 years off.
Many say heat triggers GD, I do know heat makes it feel worse, but like you most my recurrances began in cooler dry weather, as Snowbirds spend our winter in Arizona. Ater the first outbreak of 1 full year the recurrances were every 6 months, then 6 months off, most beginning a few months after we got to dry AZ. I do believe friction triggers or in the very least severly aggravated my GD. We are off roaders, Jeeping and off roading in ATV's and that means the back in constantly pressed and rubbed against the seat. If I want to participate I must lean forward the entire time holding on to steering wheel or front hand bar if a passenger. Many seasons I had to give it up. I feel as if I am being dragged over a gravel road or rubbed with sandpaper, plus the papuales got more inflamed.
I've only been on a processed sugar free diet for 3 years now, this made a major change in my histamine levels and eliminated my internal stinging, zapping and burning which radiated all over inside my skin. Dairy free is a good idea, many in my family have this issue, so I simply try to keep it at a minimum but I do believe my pro-biotic, plain unsweetned yougut helps my gut. I do know if I've had too much dairy as I get gassy. Just a little is okay. Whey, even a small amount, will blow me up. Soybeans the same, yet I can tolerate other beans in moderation. The cilantro smoothie for me is no big deal. I didn't like how it made my yummy health smoothie taste bad, so now after removing the smoothie I put in my 1/2 bunch of cilantro, fresh or frozen, add about 1/3 cup of water and blend. Then chug. Easy.
Best of luck, you're trying to figure this out and keep at it.
Yes friction, or also constant pressure like sitting with your back against a chair for a long time will aggravate existing papules or cause new ones to emerge, at least for me.
Hello! I'm new to this site. I'm still trying to navigate so I thought it would be easy to just reply to your post (not sure if others will see it here tho, I'm open to comments from others too). I've been dealing with Grovers for 10+ years, although I wasnt diagnosed until about 3 years ago. From what I have read, my condition seems pretty mild. I get my worst flare-ups in the winter. I live in Colorado which is very dry in the winter. Dryness seems to aggravate it...as well as other things. I have read about the cilantro shakes and I'm going to start trying that. I'm curious about heavy metal toxicity. If the shakes work due to the cilantro, has anyone tried more of a focused heavy metal detox instead of doing the shakes longterm? I have been on a gluten free, low sugar diet for about 8 years. Perhaps contributes to a milder case? I went completely dairy free about 6 months ago and noticed an improvement after that as well. I did just get a flare-up and so I'm exploring new options. I'm so tired of this and would love to kick it off permanently!
Hello. I do not have any symptoms or suspicions of Grover's disease in myself. I came across this post whike searching for heavy metal toxicity. Do not try cilantro. Cilantro and chlorella can bind themselves to metals but they redistribute the metals in other parts of the body. They do not effectively eliminate them out of your body. Wild blueberries are supposed to be very good at excreting metals. I would recommend finding a dr who does chelation therapy. Unfortunately those drs do not accept insurance for the therapy. Primary drs may be able to test your urine (do not rely on blood) for metals and if they are elevated insurance can cover treatment. There is an over the counter version of chelation therapy called Calcium Disodium EDTA. It needs to be calcium disodium. It takes longer to work because it is oral and our body does not absorb a lot of it. It is a much cheaper alternative though.
Yes friction, or also constant pressure like sitting with your back against a chair for a long time will aggravate existing papules or cause new ones to emerge, at least for me.
I think of it less as pressure and more as occlusion. In other words, if the surface is not breathable, such as a leather chair, I'll be triggered in minutes. I'm good for a few hours in a fabric chair. If it is a thin mesh surface, like a hammock, I'm fine all night
I feel your pain I have had this crap for 6 years there were times I thought of ending it all. The first 3 years were the worst, no part of my body was left unscathed. I got this when I was 74 I am now 80 so much for the golden years.It takes away your energy and your motavation you feel tired all the time. About the bad ones on your back, try this a small 3 inch paint roller a very short nap and add a 2 ft. curved stick and you can reach almost every place.I have a cream thats for poison ivy that works well for me called iverest just the cream not the spray. Ive been doing this for years I can at least get some sleep Good luck this shit is no fun.
I got Grovers about 20 months ago after sleeping on a new, super warm mattress. I wasn’t able to sleep through the night (because of the pain/itching - felt like someone was drilling on my back). I switched dermatologists & after a short course of steroids, she prescribed Gabapentin. 300mg at night & 100-200mg during the day as needed.
Finally relief!!!
I also alternate a couple of prescribed creams w/CETAFIL. I’ve gradually reduced the Gabapentin to 100mg of Gabapentin at night & still no itch.
I'm so excited that the c oil is helping you, it sure is more convenient.I never tried it. The c pills never helped.
Bad news not just for me but for all of us so I haven't wanted to post this news to discourage others.
I've been in denial for almost a month and now must face the fact that after 2 years I'm starting a new outbreak of GD. It's minor so far, but still classic symtoms: location- front and back lower torso maybe a dozen papuales, minor itching at this point and discomfort laying on my back. No big deal yet and it's not affecting sleep so far. So yes I started drinking blended cilantro daily for the last few days.In the past 2 years only had a few.
I've changed my routine. Truly the cilantro in my normally delicious morning smoothie concoctions makes it all taste ugh. So I make my basic smoothie, then put fresh or frozen cilantro in the blender with water, maybe 6 oz. Blend it up, take deep breaths and chug it. Call it a tonic and just get it over with. Then I can enjoy my smoothie.
Ironically Mariannej, a fellow blogger who learned about cilantro like me from Kimass1's discussion on a different Mayo GD blog, reported that her GD had returned also. She had been in remission like me because of cilantro. Sadly she has a full blow miserable case and has returned now to the cilantro smoothie.
I must face the fact that GD is chronic, yet I put the symtoms in remission before and am hopeful this treatment will help me again.
I hope this report doesn't discourage others from trying the smoothies. Because of cilantro I had my longest remission period ever, previously my remissions were only about 6 months.
What can you do? GD is a chronic, meaning incureable disease. Nothing any dermatologist or allergist tried help me, not even steriods which can help another form of eczema I have, ACD. Yet I am not saying there is nothing you can try. I recommend reading this blog, going back to a different Mayo Blog about GD, it is in discussions titled, Grovers Disease, What works to helpf find relief. Start reading about Feb 2019. Follow the progress of us drinking fresh or frozen cilantro. Yuk, but pain is a serious motivator. Reseach the benefits of heavy metal detox, this is what cilantro will do, it detoxes heaby metals. You will read about heat, friction, sunlight all being triggers. Classically GD changes, you are seeing that. Most have active and inactive periods, although I have read where one person had a 6 years massive break out not getting any relief until he drank cilantro.
We are real folks, experimenting because we are forced to. It will take you time to read this blog, the first time I ever heard about cilantro was from Kimass1 in a Feb 27, 2019 posting on the blog I mentioned, she also had us follow an earthclinic site where she first learned about. Yes there is lots of repetition, but we also develped a comradary. A band of suffers who were not quitters and some of us benefited and all learned more about GD. Also go to the internet and look up the link between Parkinsons, Alzheimers and Grovers disease and heavy metals.
I wondered where you disappeared to. I read the other site every day but see this one listed only occasionally. I just signed up for it so hopefully I will see it listed more often. Nice to see you again,
I wondered where you disappeared to. I read the other site every day but see this one listed only occasionally. I just signed up for it so hopefully I will see it listed more often. Nice to see you again,
You have always been supportive and informative for others. I've backed off blogging as I have been clear of all 3 forms of my eczema for years. I've gotten on with my life and seldom search for info about eczema anymore. Yet I do take a look at both this site and the Inspire skin site and share occasionally, mostly fellow GD sufferer's were like me in the early years, preferring to believe there is a pill, topical or other prescription that will help. None of them helped me. Trying the cilantro takes more effort. In my case the pain motivated me to try this detox. The cilantro only helps about 40% of those that I used to blog with. For years educating myself about eczema had been an obsession for me because I had 3 different forms. We need to become experts when medical science fails us. For my Allergic Contact Dermatitis, ACD I avoid all know allergens based on my 5 Day Extended Patch Test results which I've have twice plus a blood test for metals. For my Perioral Eczema, PE, I avoid all steroids on my face. Steroids trigger PE. For GD, which this discussion relates to I suffered from for over 5 years on and off I have been clear for years ever since I did a full 6 months of a cilantro heavy metal detox, most only do it for 2-3 months, but my misery had been so great I was afraid to stop.
Besides all of that I gave up alcohol 5 years ago and processed sugar over 3 years ago and limit natural sugar. I learned about the relationship between yeast (fed by sugar) and inflammation due to raised histamines from the book by William Crook, MD, The Yeast Connection Handbook. I have been back on gluten for several years, it recommended to avoid, but it is not affecting me. Giving up processed sugar is what I believe is keeping my inflammation down. I have never been overweight or ate an excessive amount of sugar, but starving out the yeast definitely dropped my internal inflammation. Previously you could take a retracted ball point pen and rub it on my back and I would have a red line, no more.
Nodgabnoj, I hope your symptom's are improving or dormant. You're a brave eczema warrior and a true friend to this site.
You have always been supportive and informative for others. I've backed off blogging as I have been clear of all 3 forms of my eczema for years. I've gotten on with my life and seldom search for info about eczema anymore. Yet I do take a look at both this site and the Inspire skin site and share occasionally, mostly fellow GD sufferer's were like me in the early years, preferring to believe there is a pill, topical or other prescription that will help. None of them helped me. Trying the cilantro takes more effort. In my case the pain motivated me to try this detox. The cilantro only helps about 40% of those that I used to blog with. For years educating myself about eczema had been an obsession for me because I had 3 different forms. We need to become experts when medical science fails us. For my Allergic Contact Dermatitis, ACD I avoid all know allergens based on my 5 Day Extended Patch Test results which I've have twice plus a blood test for metals. For my Perioral Eczema, PE, I avoid all steroids on my face. Steroids trigger PE. For GD, which this discussion relates to I suffered from for over 5 years on and off I have been clear for years ever since I did a full 6 months of a cilantro heavy metal detox, most only do it for 2-3 months, but my misery had been so great I was afraid to stop.
Besides all of that I gave up alcohol 5 years ago and processed sugar over 3 years ago and limit natural sugar. I learned about the relationship between yeast (fed by sugar) and inflammation due to raised histamines from the book by William Crook, MD, The Yeast Connection Handbook. I have been back on gluten for several years, it recommended to avoid, but it is not affecting me. Giving up processed sugar is what I believe is keeping my inflammation down. I have never been overweight or ate an excessive amount of sugar, but starving out the yeast definitely dropped my internal inflammation. Previously you could take a retracted ball point pen and rub it on my back and I would have a red line, no more.
Nodgabnoj, I hope your symptom's are improving or dormant. You're a brave eczema warrior and a true friend to this site.
Just really happy everything seems to be in remission for you. Truthfully I believe you have helped numerous people because of the incredible amounts of research you have done and blogged about. I did and still do what I can, but I see you as the Mayo Clinic GD hero. Just glad to have run into you again. At this point I’m pretty much in remission. I had about 6-8 months of serious problems. For the next couple of years they came and went, but now thankfully, pretty much nothing. I still read this blog as well as the one on FB. Bottom line, many people suffer far worse than myself. Just wonderful to hear you are well. Have a wonderful New Year.
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We have much in common, except for the severity of the GD outbreaks. Like you it was undiagnosed for years, dermatolgists assuming it was the Allergic Contact Dermatitis I had for voer 15 years. The cilantro put me into dormancy for over 2 years and in the last few months I have had a mild outbreak, same torso areas, but the itching and pain is tolerable. For 2 months have gone back on it as a daily routine and it seems my mild recurrance is simply stalled. My papuales are 5% in severity compared to past outbreaks. Yet why now after 2 years off.
Many say heat triggers GD, I do know heat makes it feel worse, but like you most my recurrances began in cooler dry weather, as Snowbirds spend our winter in Arizona. Ater the first outbreak of 1 full year the recurrances were every 6 months, then 6 months off, most beginning a few months after we got to dry AZ. I do believe friction triggers or in the very least severly aggravated my GD. We are off roaders, Jeeping and off roading in ATV's and that means the back in constantly pressed and rubbed against the seat. If I want to participate I must lean forward the entire time holding on to steering wheel or front hand bar if a passenger. Many seasons I had to give it up. I feel as if I am being dragged over a gravel road or rubbed with sandpaper, plus the papuales got more inflamed.
I've only been on a processed sugar free diet for 3 years now, this made a major change in my histamine levels and eliminated my internal stinging, zapping and burning which radiated all over inside my skin. Dairy free is a good idea, many in my family have this issue, so I simply try to keep it at a minimum but I do believe my pro-biotic, plain unsweetned yougut helps my gut. I do know if I've had too much dairy as I get gassy. Just a little is okay. Whey, even a small amount, will blow me up. Soybeans the same, yet I can tolerate other beans in moderation. The cilantro smoothie for me is no big deal. I didn't like how it made my yummy health smoothie taste bad, so now after removing the smoothie I put in my 1/2 bunch of cilantro, fresh or frozen, add about 1/3 cup of water and blend. Then chug. Easy.
Best of luck, you're trying to figure this out and keep at it.
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5 ReactionsYes friction, or also constant pressure like sitting with your back against a chair for a long time will aggravate existing papules or cause new ones to emerge, at least for me.
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2 ReactionsHello. I do not have any symptoms or suspicions of Grover's disease in myself. I came across this post whike searching for heavy metal toxicity. Do not try cilantro. Cilantro and chlorella can bind themselves to metals but they redistribute the metals in other parts of the body. They do not effectively eliminate them out of your body. Wild blueberries are supposed to be very good at excreting metals. I would recommend finding a dr who does chelation therapy. Unfortunately those drs do not accept insurance for the therapy. Primary drs may be able to test your urine (do not rely on blood) for metals and if they are elevated insurance can cover treatment. There is an over the counter version of chelation therapy called Calcium Disodium EDTA. It needs to be calcium disodium. It takes longer to work because it is oral and our body does not absorb a lot of it. It is a much cheaper alternative though.
I think of it less as pressure and more as occlusion. In other words, if the surface is not breathable, such as a leather chair, I'll be triggered in minutes. I'm good for a few hours in a fabric chair. If it is a thin mesh surface, like a hammock, I'm fine all night
I feel your pain I have had this crap for 6 years there were times I thought of ending it all. The first 3 years were the worst, no part of my body was left unscathed. I got this when I was 74 I am now 80 so much for the golden years.It takes away your energy and your motavation you feel tired all the time. About the bad ones on your back, try this a small 3 inch paint roller a very short nap and add a 2 ft. curved stick and you can reach almost every place.I have a cream thats for poison ivy that works well for me called iverest just the cream not the spray. Ive been doing this for years I can at least get some sleep Good luck this shit is no fun.
-
Like -
Helpful -
Hug
1 ReactionI got Grovers about 20 months ago after sleeping on a new, super warm mattress. I wasn’t able to sleep through the night (because of the pain/itching - felt like someone was drilling on my back). I switched dermatologists & after a short course of steroids, she prescribed Gabapentin. 300mg at night & 100-200mg during the day as needed.
Finally relief!!!
I also alternate a couple of prescribed creams w/CETAFIL. I’ve gradually reduced the Gabapentin to 100mg of Gabapentin at night & still no itch.
I've found that the magic fruit to disguise the taste of cilantro in a smoothie is pineapple.
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1 ReactionI wondered where you disappeared to. I read the other site every day but see this one listed only occasionally. I just signed up for it so hopefully I will see it listed more often. Nice to see you again,
You have always been supportive and informative for others. I've backed off blogging as I have been clear of all 3 forms of my eczema for years. I've gotten on with my life and seldom search for info about eczema anymore. Yet I do take a look at both this site and the Inspire skin site and share occasionally, mostly fellow GD sufferer's were like me in the early years, preferring to believe there is a pill, topical or other prescription that will help. None of them helped me. Trying the cilantro takes more effort. In my case the pain motivated me to try this detox. The cilantro only helps about 40% of those that I used to blog with. For years educating myself about eczema had been an obsession for me because I had 3 different forms. We need to become experts when medical science fails us. For my Allergic Contact Dermatitis, ACD I avoid all know allergens based on my 5 Day Extended Patch Test results which I've have twice plus a blood test for metals. For my Perioral Eczema, PE, I avoid all steroids on my face. Steroids trigger PE. For GD, which this discussion relates to I suffered from for over 5 years on and off I have been clear for years ever since I did a full 6 months of a cilantro heavy metal detox, most only do it for 2-3 months, but my misery had been so great I was afraid to stop.
Besides all of that I gave up alcohol 5 years ago and processed sugar over 3 years ago and limit natural sugar. I learned about the relationship between yeast (fed by sugar) and inflammation due to raised histamines from the book by William Crook, MD, The Yeast Connection Handbook. I have been back on gluten for several years, it recommended to avoid, but it is not affecting me. Giving up processed sugar is what I believe is keeping my inflammation down. I have never been overweight or ate an excessive amount of sugar, but starving out the yeast definitely dropped my internal inflammation. Previously you could take a retracted ball point pen and rub it on my back and I would have a red line, no more.
Nodgabnoj, I hope your symptom's are improving or dormant. You're a brave eczema warrior and a true friend to this site.
Just really happy everything seems to be in remission for you. Truthfully I believe you have helped numerous people because of the incredible amounts of research you have done and blogged about. I did and still do what I can, but I see you as the Mayo Clinic GD hero. Just glad to have run into you again. At this point I’m pretty much in remission. I had about 6-8 months of serious problems. For the next couple of years they came and went, but now thankfully, pretty much nothing. I still read this blog as well as the one on FB. Bottom line, many people suffer far worse than myself. Just wonderful to hear you are well. Have a wonderful New Year.
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Hug
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