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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?
The arginine / lysine connection was made by me because I started to explore the theory that GD, while not Herpes, is Herpes-like. It comes on from a variety of triggers, sometimes heat and sun. Sun can be a trigger for Herpes 1. It can come once, or it can recur, much like other forms of Herpes. The first attack is often the worst. In me, it travels up and down my trunk by levels, suggesting a spinal source, not a systemic or skin source. And the fact that quite a number of us found ourselves with GD after shingles shot (and in some cases, including mine, shingles.) The fact that it did not touch the area of skin where my shingles occurred reinforced that impression. So I looked for what could aggravate and what could alleviate Herpes, and that's where arginine/lysine appeared in my research. It was just a wild guess and for me, it yielded a great result. Your diet is already rich in lysine – but my diet is high in arginine and low in lysine. I adopted my diet (essentially the original Pritikin diet, not the watered down version they promote now,) because my brother had serious heart disease. He went on this diet and I did too. My diet was very close to it when I started, so it wasn't a big change for me.
The cilantro connection does suggest heavy metals in some cases. In my case, the cilantro, and taking zeolite, which should also remove heavy metals, including mercury from my system, did nothing. BTW, my research on cilantro as a detox for mercury mentioned that it can removed mercury from organs which puts it into your circulatory system but if you don't take extra measures to remove it, mercury can redeposit itself in even more harmful ways. I read that chlorella should be taken 45 minutes to an hour before cilantro to help with the removal of mercury from the bloodstream. Here's an NIH article about chelation/detox that reviews some of these issues: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/. Chlorella may be next on my list to use. What a journey!
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I am male (75) with recently diagnosed GD. Also I had a TKR done in July of 2018 which is still a problem. I developed a rash around my operated knee leading me to think I was having a metal sensitivity to my knee prosthesis. So I opted to pay the $ and get tested for that. The tests came back -ve for the metals in the knee but +ve for Aluminum! My numbers were over the hi limit. I have no idea how I come to have so much aluminum in my blood. (I don't use alum. cookware) Big Question: Is it possible that this level of Aluminum is responsible for my GD? If so, will taking Cilantro (help) remove this metal from my system? I am desperate. I sleep maybe 3-4 hrs. at night then I scratch for several hours before falling asleep for 1- 1 1/2 hrs due to exhaustion. I have blood stains on my pillow, sheets, shirts, underwear etc. I sometimes forget to carry my cell phone but my back scratcher is my constant companion. I'm on Acutane (10 mg), Blexten(20mg) and Lyderm(0.05%) cream. None of which is helping at all. My rash is everywhere. Bumps are forming, becoming permanent. Clothing, pressure, seems to aggravate the condition. There is no relief. It makes me think, wonder how human beings have survived this long with so many frailties, so many conditions, diseases. Evolution must have missed something or our DNA would be better equipped to handle these sorts of events.
@mnitchke The only way you will know if the cilantro will work for you is to try it and patiently stick with it. For some it took months to resolve or lighten. It might be wise to also add chlorella (tablets can be purchased on internet) to help with the cilantro. I am a believer in the cilantro, cotton and whole 30 diet for the worst of the time. Click on my name and you can read my posts only. Start at the bottom, which is the beginning. That is much easier than trying to tell you everything I know.
Chlorella paired with cilantro can help with eliminating heavy metals from your system. Chlorella should ideally be taken 45 minutes before cilantro. (I wash and freeze my cilantro to keep fresh. I break off a generous bunch and put in my smoothie.) I have been taking both – added chlorella a couple of weeks ago; cilantro alone did nothing for me. I take approximately 3 grams/day. I think it is making a difference.
My GD rash has faded considerably. My rash has changed from chicken pox like bumps to more prickly heat type tiny, barely visible bumps. Itching continues and is variable. Sometimes I think, "Yay, it's going away," and then I itch worse than ever, despite the fact that my bumps are barely visible. I think my GD is changing and my efforts are resulting in keeping it at bay, rather than curing. I am using witch hazel on bumps, I then follow with a moisturizer and arnica if itch is less, extra strength Bengay if it is bad. (Anything with menthol and camphor produces a burning sensation which competes with the itch.) Also, I take a drowsy making antihistamine at bedtime. I use chlorpheneramine because it's cheap and I can buy bottle of 1000 from Amazon for very little money. Basically, I take pretty much every bit of advice from people on this group. Dermatologists and meds have not been very helpful for most.
Regarding the source of your body aluminum, here's an article from the CDC outlining some common sources of aluminum: https://www.atsdr.cdc.gov/phs/phs.asp?id=1076&tid=34.
The articles on removal of heavy metals with cilantro and chlorella do not mention aluminum. Here's a great summary article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/.
Regarding the removal of aluminum specifically, there is a drug called Desferrioxamine which you might ask your doctor about. Here's an article about removal of aluminum using this drug. https://pubmed.ncbi.nlm.nih.gov/3842106/ Also, there is some documentation of the use of mineral water to reduce aluminum via silica content of mineral water. Here is a couple of article summaries that addresses that. https://pubmed.ncbi.nlm.nih.gov/22976072/ and https://pubmed.ncbi.nlm.nih.gov/17435954/ I may try that myself, just in the interest of preventing Alzheimer's disease.
Itching is a most terrible torture:(
I took Accutane (Isotretinion) 40mg for 5 months, problem solved finally. My GD (that I battled for 5 years was gone the first week of taking it, but continued taking it for another 4 1/2 months). Lyderm (Fluocinonide) is a Class II topical steroid (stronger) but did absolutely nothing for me. When something doesn't work – go back to your dermatologist and move on to something else (topical). Triamcinolone acetonide 0.1% worked well for me most of the time even though it is a Class IV topical steroid. When I needed the really big guns – I used instead the Clobetasol propionate 0.05% (Impoyz) which is a Class I topical steroid (strongest there is). That would almost heal me but not quite, it would still return but sure was a relief. I have now been GD free for 14 months since starting the Accutane (Isotretinoin) 40mg last February, 2019. Occasionally I feel like pin pricks on my chest kind of what I would feel in the past with GD. Then I take (1) Accutane (Isotretionoin) 40mg pill for (4) days in a row. Problem gone by day 2. Again, GD free 14 months after having it (non-stop) for 5, maybe 6 years. There will be people on this site that will try to dissuade you from using topical steroids. Your condition is extremely chronic and possibly worse. If your dermatologist disagrees with trying something different right away from something that isn't working, then maybe you need a new dermatologist that's more experienced in this area.
Ok I have been reading every single post here. I'm now on page 11. I am male, 75 yo & was diagnosed approx 1 month ago with GD. Now here's the thing. I was told, read & believed that GD is an 'old man's disease' yet the majority of contributors here are female. So where are all these geezers? I will also post my story closer to the end of these posts.
I wondered about why more women post here and decided women are more into blogging- sharing what we have learned and also needing to off load when miserable.
I was scheduled for a TKR but insisted I have blood test for allergies. This blood test determined I was allergic to 5 or 6 metals and like you aluminum was high, nickle moderate and the others mild. My ortho was shocked, he said aluminum allergy was rare. Like you don't and never have cooked with aluminum. I don't drink sodas.
I sure hope you try the cilantro detox. I worked for me. It is a heavy metal detox and I also still take the chlorella tablets.
Frogger is another "old geezer", who doesn't blog so much anymore as he is still in remission I believe. He also had great success with cilantro. He is stopped using after he went into remission and although it put me in remission after a few months I was on it for about 10 months and went off in October because I started getting skin darkening on my cheeks. Over consumption of cilantro causes this. Still no new breakout. This is the longest I have ever been in remission.
Pressure caused severe pain for me, on top of the itching. I couldn't lay on my back or lean back in a chair or car seat. I know my skin is permanently changed as I always have a few bumps and scabs on lower spine area, but they are not itchy.
Stay hopeful, although my first outbreak lasted a full year, a year of misery, now 4 years later feel fantastic. One year is not unusual for a first outbreak. I am realistic and know it be back someday.
You are one tough cookie. Total admiration
We are forced to get tough. Without my relentless searches, just like you and others are doing on this site I would not be alive today. My first form of eczema I developed in middle age, Allergic Contact Dermatitis, ACD, made my body feel as if it was on fire, plus itching and stinging. My derms were no help, only suggesting steroids or cortisone. I would lay in bed at night planning the cleanest and least painful way to kill myself not wanting to leave a mess for my husband or others to clean up. Even considered a train track as well as dozens of other ideas. Turns out I am allergic to 3 of the 5 classes of steroids and cortisone is in one of those classes all of which doctors were treating me with. I had to learn about testing on my own for ACD. Now I know what to avoid and no more ACD. Also finally accepted that even with contact avoidance I must give up sugar and limit gluten. A sacrifice, but it definitely helps me and others. Yet we are all unique, that's why you need to study and try anything that isn't dangerous. I even diagnosed my second form, Perioral and have never had it again- 2 derms were treating it as ACD and steroids (my 2 safe classes) actually fuel the Perioral, which I learned about on another blogging site and saw photos and descriptions on dermnetnz.org (awesome site for photos).
There is such a minimal amount of information, even for doctors, that with research you can learn all and more the doctors do. Pain is a big motivator.
Thanks for your, always informative, response. I am going on to my 8th month with this situation. I do believe that the shingles I was doing smoothies for about two months, but gave them up because they didn't seem to have an effect. I'm back doing them again. I did two rounds of oral steroids over a period of two months, 7 days each. The relief was blessed, but the itching has returned. I knew it would, but it is possibly more aggressive than before. I have tried just about everything that has been mentioned on this site, but changing my diet. I eat quite thoughtfully, minimal meat, lots of fruit and vegetables. I think I am going to try eliminating the small amounts of sugar that I consume and will start looking at the diet that you, and others on this site, recommend. I find that the itching is worse mostly in the morning. Having seen one of your previous posts, I now know why. My symptoms seem to be a little "untraditional", in that I get a
lot of annoyance on my neck and scalp. Sometimes it also irritates the lower part of my legs. The last time I saw my derm, he said that, despite a biopsy, I may not have GD because my skin was so clear. I saw the picture of the woman's abdomen on this site, a couple of days ago. My outbreaks are not nearly that severe. I can't imagine her agony. What shocks me is that the medical field knows so little about this disease, and seems to take very little notice. I am constantly amazed at the amount of information that you, and others on this site, have discovered. I am going to have to make some more changes to my diet in hopes that I can at least mitigate the misery that my GD(?) has caused me. Thanks again for all your insights.
Could you remind me what testing you have had. As mentioned I have 2 chronic forms, ACD and GD and my 3rd form of eczema should not return because now I know what triggers it. GD did bother the back of my neck and just into the back hairline and I have read that others have it in this location. Typically GD is a torso rash, but have read others have it spread to thighs and arms.
The photo you mentioned looked like some photos I have seen of GD, but didn't look like mine either. My papuales were tiny, almost goose-bump size and I had hundreds much closer together. Most severe on lower back torso, but it spread to upper back torso and then abdomen and a few on my chest. Mine were never as raised as those in the photo. My recurrences have been more limited to my back, especially along the lower back and then up my spine. If you got to dermnetnz.org and search for GD they have pages of photos and we with GD manifest slightly differently. I did find photos similar to mine, but all the photos on this site showed the rashes to be more advanced than mine, wow, as miserable as I was I felt grateful mine was not as physically advanced. However on the inside I was suffering as I had intense itching and pain. Many do not get the pain.
I never noticed that steroids helped and tried topical steroid and an injection. I never took oral steroids. Steroids did help with ACD, but if exposure to allergen was still present symptoms would reoccur.
Diet for me was an act of desperation. Like you felt I had a healthy diet. I have a big appetite and eat as much as my 250 lb husband and I weight half of that. I never dieted in my life so was unprepared for how challenging it would be. I could eat all the meat and safe veggies I wanted but giving up fruit was really hard. I used to eat at least 4 pieces daily. Now, after detox, limit myself to one small piece or half of a large piece. I didn't go on this diet plan because of GD but because of ACD. I don't know if it helps with GD, but it won't hurt you to give it a try.
Like you was shocked that so little is known about eczema. All the research money goes into diseases that kill us and yes eczema may make us wish we were dead but it doesn't kill us.
Hang in there, our first breakout is the worst. None are good, but usually don't last a long as the first one.
Those of us with eczema are constantly studying .
Because of this site we have read that cilantro works as a heavy metal detox and for some reason it is helping at least 50% tremendously, me included. I didn't test positive to nickle or cobalt on my patch test 5 years ago and these were the only metals tested for. Yet recently had a blood test to determine allergies to metal and bone cement as I am considering a knee replacement. Of the 9 metals it tested for I reacted to 7, only iron and titanium not causing an allergic reaction. My worst reactions were to aluminum and nickle and cobalt. Why this didn't show up 5 years ago with the patch test I don't know. Perhaps the blood test is more accurate.
If cilantro is working as heavy metal detox and cleaned out the allergic metals in my blood perhaps that is why I am improved. My thinking is that if Grover's is caused or can be triggered by metals then those of us that are allergic to metals have more of a tendency to develop Grover's and once we have Grover's a chronic incurable autoimmune disease the metal may trigger symptoms. Metals build up in our bodies.
This revelation about metal allergy's puts a few more pieces of my eczema puzzle together. I have avoided all other allergen's identified on my 5 Day Extended Patch Test, yet even when I avoid make up with my know allergens I find the majority of products that should be "safe" cause an allergic reaction. After wasting money and suffering I have found a few products I can use without irritation, but a safe eye shadow has alluded me. After buying dozens of eye brown pencils I finally found one that causes no reaction and believe me this has made me very happy as my brow hair is so light. I never tossed or gave away many of these expensive offending products and re-read the ingredients, many contain metals.
Metals are hard to avoid, they are even in our water, so let's hope the continued daily use of cilantro will continue to alleviate symptoms for many of us.
@gardeningjunkie-you say(said)"Because of this site we have read that cilantro works as a heavy metal detox ". I have posted on this blog but my posts didn't appear until much later. Here's my point, big or nothing at all: Everyone here in the 'Cilantro Club' has been experiencing results, mostly good, or even mildly good, which as a sufferer from GD is a god send. I'm one too. I'm writing this during the CoVid-19 Lockdown so access to fruits, Veg's etc. is not always easy. On to my query: Has anyone here ever thought that maybe, just maybe, the 'cause' of their GD could be related to a heavy metal presence in their body/blood? And maybe, just maybe since Cilantro is known to help remove toxic heavy metals, that is the reason for the vast improvements people are experiencing? I had a Total Knee Replacement done in 2018, and in 2019 I developed a rash at the site of the operated knee. Recently I opted to have a metal sensitivity test done and found that my Aluminum level was way high, over the High level even. To-date there is no explanation as to how and why. BUT in Jan. 2020 I started a new rash, thinking it was related to the other, but it turned out to be (via Biopsy) Grover's. I still don't know how my Alum. level came to be so high so I am about to 'gasp' try the Cilantro route and if it works and IF my Alum. levels also decline, then there could be a definite co-relation between GD & Heavy Metals. Just sayin'. My GD is restrictive, and intereferes with my daily life and activities, sleep especially as I now am lucky to get 3-4 hours of sleep a night. Itch/Scratch etc.
Thanks for your reply. I am on Accutane 10 mg. which is a much lower dose than you were taking. I spoke with my Dermatologist yesterday and she doesn't want to increase the dosage yet pending lab tests in a few weeks(4) to see what effect it may have on my Liver. Meanwhile I am suffering from lack of sleep. irratability, poor personal thoughts, and more, not the least of which is constantly scratching some part of my body (Head, Neck, Chest,Arms, Legs, etc. etc.) I can't go more than 30 seconds without having to scratch.
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