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

I sure hope cilantro helps your GD symtoms. Also check out Earthlink site mentioned by Kimass1. As I have mentioned it seems to help about half of us. Most of us know within a month if it will help. At the very least it will pull out heavy metals which are tied to Alzheimer, Dementia and Parkinson's. Because of this benefit I don't now why more doctors don't recommend adults do 6-8 week detox every decade. Also some bloggers report that Facebook has a very active GD site.

What is MJ?

I'm laughing a little bit as I really admire your transparency about your experiences with MJ. I agree with you that it does intensify certain senses and it would follow that itching would respond the same way. I still smoke it occasionally and limit my inhales. Strictly for recreational purposes. However, at 76 my memory is frustrating enough, and I really have to reconsider whether or not even my limited use of the stuff might be making it worse. Just as an aside, I worked in a fish restaurant for 17 years, just retired, and virtually stopped eating two of my favorite foods years ago, Tuna, and Swordfish, due to mercury. A friend of mine started to loose all the hair on his body due to his addiction for sushi, especially tuna. That's all I needed to know. My 83 year old cousin is getting all his amalgam removed as he believes it is the root of a number of his health problems. I have had this insidious disease for just about a year now. I am patiently waiting for it to give me even a temporary break. I still do my smoothies every day. When friends ask me if they work, I say I don't really know, but I'm not willing to stop as with out drinking it, who knows, besides they are really healthy. Oddly enough, I have found that taking very hot showers, aiming the spray at my infected areas until the itching stops, and then putting Tiger Balm on them, gives me a fairly long, temporary relief. Taking 25 mg. of Trazedone, and my occasional use of the green stuff, pretty much guarantees me a good night's sleep. I'm sure that I speak for every body on this site when I say I am so thankful for your knowledge and insight. Surprised that you are not in the scientific field, as your understanding and curiosity of these issues is really admirable. Very glad that you are here.

nodgabnoj- give it a few years and you will become an expert because you must become one to get control of eczema. Some types are easier to control than GD which doesn't respond to treatments other types do. Eczema is a complicated disease and it's for life so the sooner one starts researching the better. Others have mentioned the Facebook GD site, say it's very active, have you tried it?
We all collect heavy metals and seafood as you know are full of them. I love mussels and deep water fish and learned they have the highest concentration of mercury. I grew up right next to a harbor which always had a daily catch with shark, sounds awful to some, but I loved it like swordfish for less than half the price.
I studied on line about removing amalgam filling when I learned about heavy metals, I only have 3 very old ones dentists are always surprised they are holding up as they would love to replace $$$. Many sources on line suggest that removing old amalgam fillings is more harmful than leaving them in. Mine have been in for 55 years and supposedly the mercury that leaches our of the exposed area is no longer leaching. The removal releases mercury which had been contained for years in the tooth into your body.
Memory- The build up of white matter in our frontal brain lobe is what is causing our "senior" short term memory loss. I recognized a few years ago I wasn't as sharp as I used to be. An unrelated health issue caused the need for a brain scan. The Neurologist told me I had white matter in my frontal lobe consistent with aging and alcoholism. At least I had no gray matter in the rear lobes which is evident with Dementia and Alzheimer. White matter is like Spanish Moss that hangs on our cellular connections between cells and blocks the transmission of a thought or idea. Since the thought can't get through the white matter it backs up returning to the cell that had the idea and reroutes. White matter is there for life. Every-time we drink alcohol white matter is created and builds up. I can't stop aging but I could stop drinking. No more nightly vodka on the rocks and my multiple glasses of red wine. A bell used to go off in my brain at 5 wanting my cocktail. My husband and I could sit down together and make time for each other and relax. I really enjoyed drinking. My substitute is decaf coffee, but it is not as much fun. I learned I can't just have 1 drink so after weeks of trying just to be a social drinker accepted the fact I had to quit altogether and that was 5 years now. No more interest in alcohol, zero. It was hard for friends and family to accept, as I know I am not as much fun and others try to get you to join the drinking. They've all given up.
For others seeking dietary solutions to help our aliments I found quitting alcohol much easier than the withdrawal one must go though with an anti inflammation diet. The cravings for alcohol lasted about 3 weeks. The cravings for sugar lasted for multiple months. Sugar craving has your body screaming for it every minute. I never even though I ate much sugar, desserts were occasional, but I did eat an abundance of fruit. Probably 5 servings a day. I can eat fruit now I've detoxed sugar, but only 1 serving daily is allowed. To change your diet you must brain wash yourself by constantly reminding yourself of your goal which for me was to be pain free. I very much recommend an anti inflammation diet and will never go back to "normal" eating.
I am surprised hot water helps with GD. When broken out I didn't even like the feel of running water and kept the water pressure very low with barely warm water to shower. I couldn't tolerate heat. When my hands were broken out with Allergic Contact Dermatitis, ACD the greatest short term pleasure was running hot water over the itching hands, it felt so good, but the pleasure only lasted momentarily after the heat was removed and then the itching was worse. I would get relief using Capsacian topical, chili pepper. I would use a long handled spoon to spread over my back and it would intensely burn for about 30 seconds, then confuse the cells and I would get about a 50% itch reduction enough to fall asleep, it only lasts about 30 minutes. Sounds like your Tiger Balm works on our nerves the same.
Sleep- so needed and when symptomatic with eczema the nights are long and miserable. Glad you have found relief to help you sleep. I did look into Tiger Balm but I am allergic to cinnamon which is in Cassius Root one of the ingredients. To help with high blood pressure because I am a hyper person my doctor told me to buy Valerian Root. Valerian Root is the base for Valium which I have no interest in taking as it is addictive. This low dose non prescription natural Valerian helps with my blood pressure spikes which happen when I .get too excited just watching shows like Game of Thrones. I still take 500 mg before bed or if I know I will be getting wound up with a TV show I take it early. I also take Hydroxyzine HCL 25 mg after dinner. It's an anti-histamine and it helps lower blood pressure also. It does help with hay fever and should help with itching, I can take take up to 3 daily, but just take one as it can make me feel lower energy in the afternoon.

Fwiw, I too find that my skin feels better under a reasonably hot shower. Perspiration bothers it, but I think that may be mainly because of the salt, etc. in it. Any residue of almost anything other than witch hazel, cortisone, or antibiotic cream seems to bother it. But then, even though I have or at least had GD based on a biopsy, I do think I know have as much or worse atopic dermatitis; so maybe that's what's not bothered by hot water?

I wish someone could write a program that kept track of all our symptoms, what has and hasn't helped, and contexts such as age, history, and other possible factors; look for patterns; and help figure out what's going on!

I also buy several bunches of cilantro and freeze. It’s actually quite convenient as it crumbles easily into my smoothie. (I do the same with kale.) I, too, have About 3 amalgam fillings since age 17 and I’m just shy if 73 now. I’ve read quite a few studies of amalgam removal and it can be quite hazardous for dentist as well as patient. Everyone concerned needs to detox afterwards. My daughter had her fillings replaced years ago. She had many health problems afterwards and is finally doing well. Regarding memory, since going on a the early version of the Pritikin diet (much more strict than current version,) I’ve noticed my memory has improved. I did it in the interest of heart health, but gladly accept other benefits. None of my supplements or diet or cilantro or anything I did affected my GD.

OK, true confession time. I am finally free of all rash and itching. Things had been getting worse and worse. Clove oil was controlling rash and itching but I thought I can’t do this for life and it was like playing whack a mole - and I can’t go around smelling like this. The people who own the barn where I keep my horse told me about this person they consult about health problems that seem intractable. They call her their “woo-woo lady.” You send her your saliva and she sends you a report and recommends “remedies” which are “energized water”- not cheap but I figured I have tried everything else and if I lose some money, okay, I’ll risk. By 2 weeks into the remedies, rash and itching were gone. I am still left with an itchy back between my shoulder blades, (no rash,) but I had that for several years prior to GD diagnosis. Her interpretation of my condition was that the virus in my body (Shingles, Herpes 2) compounded by the effect of the Shingles vaccine caused my body to produce an excessive amount of nagalase, an enzyme that is released by tumors or viruses (they measure it to see if chemo is working in cancer patients.) If you’ve read these posts, a significant number of people with GD diagnoses have a history of Shingrix vaccine, followed by shingles, followed by GD.

As many of us have long concluded, GD diagnosis refers to a condition which may have a variety of causes. That’s why some respond to cilantro, some to gold bond powder, etc. I had done everything suggested here to no avail.

So what does nagalase do to your body? It prevents your body from utilizing vitamin D and that interferes with your immune system. This causes the rash. So aside from the “woo-woo” source of this information, the nagalase information holds up in the medical literature.

As many of you know, I’m not given to “woo-woo” anything and spend a great deal of time researching real medical literature. But as all of you know, people with a GD diagnosis are on their own.

There were 16 “remedies” and I’m almost done with them. It’s hard to admit that I went over to the “dark side.” But desperate times call for desperate measures. And I have seen that this lady has helped the whole barn family and their animals (horses and dogs.) So there you have it! I’ve come clean. Now we’ll see if this holds up over time.

Would you mind sharing the woo-woo persons contacts ? Willing to try almost anything !!

Your post was fascinating. First, sorry that cilantro didn't work for you and understand your need to keep searching. Our histories are very similar: age and Shingrix vaccine reaction creating shingles.
I don't think you went to the dark side experimenting with alternative medicine but went to the "light" as modern medical science offered no help.
Most helpful was information about nagalase preventing Vitamin D utilization. I have never heard of that. So now more homework for when my cilantro detox fails and I have a new GD breakout: research nagalase and whatever energized water is. I'm guessing it has concentrated or more easily absorbed Vitamin D.
Hope you continue to improve.

impatient- Great idea about a data base. MarianneJ is the most scientific writer we have on this blog but does she have the time to do this? Perhaps we could all submit a request to this site, asking for Mayo to take this research task on. Yet I have found doctors and medical groups indifferent to patient input as funds are not available for this research.
We have been disappointed at the lack of research with GD and interest doctors have in alternative medicine. and can give two examples. As I have mentioned I wrote up my cilantro detox success and relayed the approximately 50% success rate of others and gave to my dermatologist, a woman, who seemed lukewarm about the idea. My regular dermatologist, this women, wasn't available for my appointment I made months later. This appointment was for a non GD issue as it was dormant after detox. Her husband, also a dermatologist also, saw me and I asked him what he thought of the cilantro detox write up I did for GD and he looked blankly at me and knew nothing about it.
Another example, I used to have Adult Leukemia, Chronic Lymphocytic Leukemia, a chronic- meaning incurable, form of leukemia which I got about the same age, 50, I started getting eczema. I was told I would have 10-15 years as it is most often a slow moving form of leukemia but with no cure. It smoldered away for 10 years with my blood count worsening, but not yet requiring treatment. After 10 years my CBC started improving slowly, after 5 years all the cancerous lymphocytes were back to a normal level. This happens is called a spontaneous remission which has happened in less than 1%. Italians did a study 20 years ago and found 5 people. I wrote up my green tea regime, Muscadine grape seed supplements and so on and sent off to MD Anderson in Houston a center for leukemia patients wondering if this would help others. I never even got a reply. Now 5 years later CBC count still fine.
I concluded that if there is no money in alternative treatments, there is no money put into research.

Hi all! Returning for an update. Still Grovers free! I continued to have chronic hives until April of this year. I had a huge flare on the 29th of April and was ready to try Xolair because I was in a really in a dark place again with the pain and constant, nagging itching. But the next day they were almost nonexistent and have continued to get better To where I only have a few small tolerable patches daily that only last minutes. Strangely enough I found by accident that NSAIDS were the only thing that helped them. Seems I was dealing with some sort of inflammatory issue. Although doctors could never get to the bottom of it (naturally) Nor did they ever suggest trying them. I took an ibruprophen for a headache And noticed I was rash and itch free for the whole day! I tried it again and it was my miracle cure! But I had to be careful because it messes with your stomach lining so I would only take them when I absolutely needed it. And then about three weeks ago I noticed that I wasn’t really taking any medication because it was so manageable. I’m hoping that I’m on the tail end of this horrible journey. After reading some of the more recent comments I’m sorry to hear that there are so many more of us who have suffered with this horrible disease. But I am also glad that we have this network of support to lean on. It’s obvious the medical community does not care because there’s no money in it for them. It’s really unfortunate that they don’t pass along this information to their other patients. It doesn’t cost them a thing. I’ve told several doctors about the cilantro cure and they just brushed me off. I wonder how many people are suffering needlessly because they couldn’t be bothered to share that information. It’s very sad!