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

Sorry this took me so long. The steroid I took was a Medrol dose pack. Again my apologies for taking so long.

Perfect! I was about to summarize for newbie but you beat me to it. :)Using cilantro daily for two months. Hasn’t helped me, but still using. Regarding collagen, I have been taking now for a couple of months. Hasn’t changed my GD but my facial skin looks better. Anything that strengthens the skin matrix is helpful on some level for any AD. I’ve been taking collagen with peptides that Costco sells, but I read that hydrolyzed collagen more easily absorbed, so may switch. Taking lysine 3 grams/day in 3 doses. This has an almost immediate effect of suppressing GD rash and itching. Starting histidine today, also been found to help integrity of skin and reduce symptoms of eczema (which I don’t have.) Also taking hyaluronic acid (HA) - avoid low molecular weight HA as it increases inflammation. It should also strengthen skin. Oh, and I started witch hazel. Don’t know if it’s helping me. I use Arnica if itching not too bad and Bengay (any cream with camphor and menthol would work) if itching is bad. I’m doing everything that I’ve read about here that has a possibility of working, but avoiding steroids.

I have 3 forms of eczema, GD is one. Another miserable form is Allergic Contact Dermatitis,ACD.
Your mentioned an itchy rash and bumps all over. GD is normally limited to front and back torso area. Please Google ACD, which can cause symptoms all over and research the 5 Day Extended Patch Test. The True Test is a common test kit performed by specially licenced derms or allergists. This is not the simple environmental test for allergies to pets, pollen, molds, grasses, dust mites and so on. With this test I learned what detergents,makeups, soaps, fragrance, preservatives (in lotions and topicals as well as is dish soap and so on), fibers, adhesives and so on to avoid for life. The very cleaning products you are using could be seeping though your skin and into your bloodstream raising your histamines. The very clothing, bedding, furniture fibers, carpets and flooring can be off gassing and or with contact seeping though your skin. Skin is not occlusive, what is surrounding you on the outside is getting inside of you and into your bloodstream. Yes it is a bother and expensive to change out your surrounding. Or for example like me need to carry around a plastic bag to cover a theater seat or doctors office chair because of fibers treated with caustic fire retardant, Scotch Guard and made with blended fibers for example, but it can be done. GD is actually more complicated as the triggers are not a immediately obvious. Many with eczema have a collection of forms, so don't assume you only have one type to deal with.

babbs- Appreciate your info about the collagen, even if it doesn't help with GD good to know about facial skin health!
Have you gone processed sugar free and limit natural fruit and gluten like I have? This helped with another form of eczema and I truly believe it has lowered my histamine level overall helping with GD.
I do take one dose of the 3 gram lysine daily , may up it to what you are doing.
Like you avoid steroids, but with GD found they never helped anyway.

You are such a wealth of information and I appreciate your willingness to share! My diet has been vegetables, beans and lentils, brown rice, oats, nuts and nut butters and seeds, wild caught Alaskan salmon. I am a very boring eater. I don’t use any oil for cooking and the only oils I eat are in avocado and salmon and the black seed oil I recently started. It hasn’t helped my GD but the stuff has been shown to cure almost everything else. 😂 It’s helped my husband’s asthma and allergies, and I’m not stuffy at night anymore. It has to be diluted, best in 1/2 teaspoon honey. Every morning I make a smoothie with non-fat plain yogurt, frozen berries and pineapple, frozen kale, cilantro, and my supplements: lysine, collagen, wheatgrass, assorted other things like pqq, resveratrol, CoQ10, and now will add histidine. My only cheat is very dark chocolate every night. My diet has evolved over the years as I noticed what agreed with me and what didn’t. Unfortunately, my collagen powder and the nuts and seeds are high in arginine which seems to make me worse almost immediately, which is why I space out my lysine because it seems to block that effect.

Now I need to research arginine. I do splurge on almonds, roasted and salted and the addition of salt is certainly not helpful.
My diet is heavy on meats, fresh water fish, poultry, eggs and occasion ocean fish and yes vegetables. I find I do well on high protein foods and the fats in meats, olive oil and butter don't bother me. I avoid all processed meats like corned beef, ham, bacon and luncheon meats.
I am one of the few who never understood most everyone's love of chocolate, so at least that is one food I never had to give up.
Because of metal allergies I try to avoid large ocean fish,like Salmon, but still enjoy salmon at least every 3 weeks.
GD is supposedly tied into mercury. A few months ago a member of this site sent in an article- Mercury, Grover's Disease and Parkinson's which purports that 90% of all Parkinson's victim have GD. Both has similar cellular structural changes. It does say with Parkinson's chelation therapy removing the mercury can lesson Parkinson's symptoms. Mercury is supposedly also detoxed with cilantro. Ironically my younger brother now 66 just got diagnosed with Parkinson's and both sisters have eczema and on of them also has GD. MY brother with Parkinson's doesn't have GD.

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!

Dear Babbs, Your research astounds me! It's amazing how motivating misery is; forces us to educate ourselves.
The article you referenced has scientifically researched information is above my level of comprehension, yet I did take away that heavy metals do negatively affect our bodies. I have been taking Chlorella for months. I read it helped with metal removal but I didn't understand the science behind it. I was taking it simultaneously with the cilantro, which now I understand from your explanation is not the proper order. I have been taking NOW brand, Chlorella 1000 mg once daily with no noticeable negative side effects. I stopped the cilantro a month ago, but still take the Chlorella. It's inexpensive Algae full of chlorophyll and beta carotene and figure it's good for me for those reasons alone.

Cold Sores, herpes 1, are a mystery to me. My husband of 51 years has suffered with them occasionally when younger but as a senior they were frequently recurring until he started on Valacyclovir treatment. He takes 5 mg daily or if he did become symptomatic about every 3 months in the same spot on his lower lip he takes 1 gram for a few days. He must take the 1 gram to stop it right at the beginning of the tingle sensation he recognizes as a recurrence. Before Valacyclovir his cold sore could last for months. I learned that bee propolis in ointment form helps some with cold sores- both healing and suppressing it is anti-bacterial and anti-fungal. I ordered on Amazon and now after he has been using for about 6 months can say absolutely his recurrence rate is less, in 6 months only one beginning outbreak; short lived. I have shared info about Valacyclovir and propolis to friends ravaged with cold sores and they have had great success. Now I am wondering if the Valacyclovir PX could help with GD. I may ask my derm for a px when my next GD recurrence starts and see if I can be allowed to be a Guinea Pig. If not may simply get into my husbands stash, I keep extra amounts of the 1 gram stocked because if he has a recurrence he must take it ASAP to suppress it and often these pill expire but I don't discard unless years old, just in case. When my trunk is broken out from GD it would not be realistic to think I could coat the entire area with small propolis tube of ointment, but may try in a limited area to see if it helps. He has been using Propolis Ointment Homopathic, 30 gram tube (3 pack) $16.17, made in Russia by Mos Pharma from Amazon with free shipping.

You all are so good at your research. The article about the detoxing was way over my head. From what I understand detoxing with cilantro should not be done unless taking the Chlorella supplement prior. Due to the toxins going to another area which could cause more problems. Did I get the just of that correctly? I’m not taking the Chlorella supplements. I did try cilantro with a recent breakout. I did not do as much as others did which was about 1 cup. I did about 10 sprigs cut it up along with stems and hid it in my salads for a week. Probably not a detox amount. I’m assuming I’m ok even though I’m not taking Chlorella supplements. It was a tough week of itching and a few bumps but mostly gone and not itchy for a couple of days now. Still a few on my upper back shoulder area but crusting up and not itchy. Was also applying Sarna. In any case good for now. It also got cold and rainy in California and been indoors as we all know with the corona virus. So being inside may have benefited too. In any case my question is should I not be doing the cilantro even in small amounts if I’m not taking Chlorella?

I ran out of chlorella and am still doing fine with the cilantro. I also reduced the cilantro dose and frequency as I have not had an outbreak for many months. I can still feel a stinging sensation if the area gets heated, such as when I am hugging my feather pillow at night to protect my shoulder. I simply remove the heat source and drink a cilantro smoothie the next few mornings. Keeping my fingers crossed.