Mayo Clinic Connect
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?
impatient- If fresh cilantro isn't available and I agree slimy cilantro would not be advised as it would be full or bacteria or mold, there are other herbs available. Have you talked to your grocery store produce manager?Just as you can order a special cut of meat from the meat department you might be able to get a special order of cilantro. Once in you can store as we have suggested for at least 5 days and also once you get it, divide up and freeze most of it. It does keep for weeks frozen. I have read you only need to detox for about 2 months, I kept up the detox for about 8 months out of fear my GD would reappear once I stopped the cilantro, but I'm still okay. Garlic is proven to detox, yet not sure how you could tolerate juicing garlic. Milk Thistle I know nothing about but that also can remove heavy metal. You need these herbs to bind to the heavy metal and pull it out of your body. I've attached an article and hope it comes though.
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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.
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Would you mind sharing the woo-woo persons contacts ? Willing to try almost anything !!
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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.
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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.
Liked by kimass1, MariannJ, billjim651, ansleyms
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!
Let me make this clear – there is nothing "in" the water remedies. This is vibrational healing. I never would have been open to it, despite the barn family's recommendations over a course of years (and before I had ever heard about GD,) if I had not read a book by an old acquaintance. Cyberstalking is a form of recreation for me. I pick an old acquaintance and see what I can find on them online. This person, it turns out, wrote a book about having suffered from chronic fatigue syndrome. He was forced to stop practicing law, got divorced, and sought out alternative healing in an attempt to get his life back. He ends up traveling the world to spend time with energy healers and besides getting results for himself, witnesses many amazing healing episodes. This world was as far from where he started in life as anyone could imagine. I read this when I was first afflicted with GD and had already started on my cilantro smoothies. Vibrational healing was not a thought I was willing to entertain at the time. Then, as the GD got worse and worse, I thought, "what if????" Eight months in a worsening condition, I was finally ready to say, "Why not?" The website for the healer I used is http://www.purplechanges.com. The waters come from Healers Who Share. This is genuine woo-woo stuff. Not homeopathy, not naturopathy. The website explains what she does. She does not discourage use of allopathic medicine, except that she is definitely an anti-vaccer. In fact, there have been times she has told the barn family that they need to see an MD immediately.
As far as alternative medicine goes, there is actually a huge amount of literature about the use of alternative medicine and even essential oils (EO) in the treatment of disease and infection: bacterial, viral and fungal. The National Institute of Health has sponsored a large number of studies that summarizes and evaluated studies from around the world on these topics and emphasizes the importance of these studies as our current medications are self-limiting in their effectiveness over time because of developing resistance.
Through this journey I have become much more knowledgeable about the use of EO. For example, I starting using lavender oil to help sleep. (There is a study on animals where they made them hyper with caffeine and then used lavender oil to calm them down, for example.) If you are curious, you can type in a search "essential oils" and the letters, NIH after and you will find these studies. That's how I came to use clove oil which definitely helped with my rash and itching (not on face or mucous membranes.)
There is research out there and doctors don't have time to look at it all. In this article, there is a discussion of the myriad of possible causes GD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4051285/. GD is really a symptom. While Nagalase may or may not have been a factor in my GD (it's never been tested so I don't know) it may not be a factor in your GD.
So glad you checked in and glad your GD is in remission but sorry your hives have/had been tormenting you and always appreciate your treatment advice. Many of us with GD have multiple skin issues we need to manage and are always seeking ways to defeat.
Many on this site may not realize kimass1 is the first person on this site who introduced use to using cilantro as a treatment, until then we were unaware of.
I still think of her as my Guardian Angel as her sharing saved me from my GD suffering.
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@gardeningjunkie you were mine as well! You understood the pain and anguish this disease can cause and you helped me through it with your kind words and support. I am forever grateful to you and this site. Also to the Earthclinic site for the cilantro "cure". I was surprised by how little was out there on this subject. But my desperation caused me to become my own best advocate and I scoured the internet for answers. Unlike ANY doctor out there. I was excited about my results and MORE than happy to share them. Hoping I could help even one person get rid of this awful disease was worth it! Thanks again and my best wished to all suffering <3
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Thank you so much for the information. I am a great believer in alternative medicine, having had lots of acupuncture for what was a chronic back problem in the "80's. I also had a masseuse who was absolute magic. It's really sad and frustrating that, like most areas of our present lives today, if there is no money in it who cares ? Thank goodness for this site, and all the people who are willing to share their knowledge.
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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.
You and I have a lot in common. I have been a bartender most of my life and did my share of drinking, rarely too excess. My drinking patterns were similar to yours. I stopped the minute I found out I had a benign pancreatic cyst. That minute. My father was an alcoholic, so I started going to Alanon about 18 years ago. Totally changed my life. I also was going to A.A. until the pandemic. I will never even sip alcohol again, and really don't care. I could care less if other people drink, I am just thankful, I was able to stop on a dime. You may want to attend a few A.A. meetings just to find out how devastating alcohol can be. I know how much you like to do research. IF you have alcoholism in you background, Alanon is a must. Sorry, I don't mean to preach, but this is a really important subject, and like you, something I know a lot about. Again, I thank you so much for all the knowledge you impart.
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Yes we have much in common. I'm half Russian and come for a long line of alcoholics which in multiple cases led to early deaths in family. No generation escapes it. Perhaps it's just relative but don't consider myself a true alcoholic. I really did enjoy it but it never affected my life in any way personal life, marriage or professional life as I also have a strong work ethic and never even started drinking daily until my son's were out of college. My mother did sober up in her early 50's and yes AA was a life saver for her, as she was also a diabetic. She kept a large framed print of the AA prayer in her bedroom. I truly didn't need AA as the day I decided to quit I basically did. Never got the shakes, ha ha. It did take will power for about 3 weeks. As I mentioned it took me a few social gatherings to figure out I can't have even one sip like you and others. Once I have one, then I wanted 3. I could have used Al-anon growing up, how my siblings and I overcame my mother's anger and violence without help from the outside is amazing. It was simply a family unspoken secret, too shameful to tell even the closest friends and it never occurred to us to tell our teachers. In truth our childhood made us stronger.
I do feel sorry for those that are too weak or as I truly believe born with an all powerful alcoholic gene to overcome this disease. I'm glad for you and others that find Al-anon helps.
Your group Al-anon discussions are probably more fascinating than my book-club meetings as you are sharing about real life.
I finally read the article you mentioned in your post. News to me is that several of my blood pressure meds can cause itch, I never knew that. It's mentions the effects of itch destroying our quality of life. They state itch is comparable to pain and the resulting lack of sleep causes depression. I know first hand it is a form of torture. This article is a reminder to keep our skin hydrated, which I have been failing to do as my skin feels fine now and doesn't look dry but I used to slather on Aquaphor regularly. I will be starting up that routine again especially with winter coming as cold dry air dries our skin out. Yet no mention of heavy metals accumulation tied to GD, which many other sites on the internet bring up.
I am also from a Russian (and Lithuanian) background. So happy to hear that you were able to control alcohol and that it didn't control you. Your story about your past is very similar to mine, as well as many other A. C. O. A's. It is so striking that the behavior is so consistent. We were truly lucky to escape the grasp. I am an avid reader as well. You must let me know some of your favorites. I have just finished reading almost all of Barbara Kingsolver who is one of the most amazing people on this earth. Gorgeous writing and an amazing sensitivity about people. Incredibly knowledgeable and insightful. If you have not read her PLEASE do. Poisonwood Bible is genius. Also just finished Where the Crawdads Sing. Beautiful. Do you know here story ? It is beyond belief. So glad we made this connection !!
Both of our ancestors had reasons to leave the Slavic countries. Amazing family tales of fleeing from Russia- poverty and hardships. Yes Kingsolver's Poisonwood Bible is an amazing book, yes genius, one of my favorites of all time. It was especially enjoyable because of it's unique story-line. The other books I read of hers were fine, but not remarkable. I have Where the Crawdad's Sing and look forward to it. Have you read Water for Elephants, another favorite of mine because of it's unique tale It's a true adventure. . My husband takes time out every afternoon to sit outside' weather permitting and read and so I have an abundant amount of action books to recycle and have read every Lee Child book with Jack Reacher as a character. Retired now and loving being a homemaker full time and a pacifist at heart I don't know why I love reading about Reacher traveling the country without a suitcase and violently righting all the injustices he finds along the way. Even with my bookclub choices haven't read a truly amazing book in a year. I loved the first few Vince Flynn books but not his others as they were all action and no soul, loved the early John Grissom books, but after those all became predictable. One of his books is unique, not about the courtroom, The Painted House, it was not one of his most popular books but both my husband and I found this profoundly moving, a real favorite of mine. Look it up. You will once again remember feeling the pain and loss of innocence growing up.
Yet this is totally off subject for this site. If you want to talk books this site doesn't allow for friends, but if you go to Inspire site it is much like the Mayo, a medical blog site that discusses various health issues, eczema is one (but no interest in GD ),you can join and request to be my friend (same name gardeningjunkie) and we can send messages personally though this site without cluttering up a medical discussion.
Although I do not have Grover's Disease I follow the Skin Health section on this blog and I have learned a lot glancing through all of your posts. Just curious, have any of you tried skin numbing cream to get some relief?
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