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

Posted by 43219876x @43219876x, Sep 23, 2016

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?

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MariannJ- That was an amazing post about itching. I have often read other bloggers mentioning the itch being tied into the spinal cord and not the brain, but you backed it up with scientific research. How wonderful that someday those that itch may get relief. Even with Patch Test results which allowed me to identify my contact allergies my histamines would build up and then my entire body would itch, 24/7 especially at night making sleep impossible. For years I needed a corticosteroid shot to calm this internal itching, burning and incessant taser like stinging. Although never overweight or an unhealthy eater out of desperation because of reading of others success with diet change I was motivated to change my diet- zero processed sugar, limited natural sugar and limited gluten I have not needed these annual corticosteroid shots going on 2 years now. These foods raised my histamines thus causing this itch.

Until itch can be controlled everyone with any form of eczema, and I have 3 all in remission, should try an anti -inflammation diet. I know we have blogged about this multiple times but those that are new to eczema or simply at their wits end need to take diet seriously. I follow one of the original plans, simple and not complicated like the Karen Fischer plan. William Crook, MD- The Yeast Connection Handbook. He ties yeast waste (yeast are living in our bodies and releasing their wastes into our bloodstream) in with raised inflammation which triggers histamines causing eczema and many other disease. Easy book to read, good simple hand drawn diagrams explaining what is happening to our bodies when we eat certain foods, basic diet to follow. A life long plan.

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@impatient

I haven't managed to do the cilantro detox per se – I tried it briefly, but the fresh cilantro available here wasn't all that fresh (shot through with bits of black slime) and took forever to clean – maybe this was when it wasn't in season? In lieu, I've been using Metal Magic, which supposedly has lots of cilantro and chlorella, which I understand are best taken together. I've been using it per the label for about 5 weeks without noticing any improvement, but I intend to stick with it for a while longer.
That said, I'd say that my GD has generally gotten less severe – not because of Metal Magic, but before that. Some bumps seem to be permanent, and permanently itchy, but there are fewer of them, there's much less scabbing, and the GD itching isn't such a torment.
The pink rash, however, is driving me nuts.

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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.

Shared files

Heavy Metal Detox (Heavy-Metal-Detox-1.pdf)

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Thank you, gargeningjunkie and everyone here, for sharing your experiences and good advice. It helps to here from others who know the same torment.

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@mariannj

Grovers is not mentioned in this article but I thought it to be interesting in understand the itch syndrome.

As most of us know, a good scratch can satisfy an itch. Yet the question of why we itch and scratch in the first place has baffled researchers for years. Recently, however, science has begun to enlighten us to the mechanisms at work in the itch–scratch cycle.
For years, the itch sensation was thought to travel along the same nerve pathway used by pain signals. Itch, in fact, was considered a weakened form of pain. Modern molecular, genetic, and anatomical studies now indicate that itch usually follows its own distinct course, says Qiufu Ma, PhD, an HMS professor of neurobiology who has studied the phenomenon. Itch runs along a neuronal interstate highway system that links the skin, the spinal cord, and the brain.
Itch and pain represent different sensations that evoke distinct behaviors. Place your hand on a hot burner and you instantly pull it away; the pain is intense. By contrast, when a piece of clothing brushes against your bare forearm, you scratch to quiet the irritation, giving little thought to the sensation and your reaction to it.
“These distinct behaviors likely developed to protect us against different types of threats,” says

Anne Louise Oaklander, MD, PhD, an associate professor of neurology at HMS who studies chronic pain and itch. “Pain is obvious and, without it, we wouldn’t live long—there would be nothing to prevent us from putting our hand into a fire or onto that hot burner. ” She adds that the itch–scratch cycle most likely evolved to protect us from small, clinging threats—insects or plants—that can be avoided by withdrawal movements.
A scratch for every itch
Previously, few studies focused on the neural mechanisms associated with itch, but several recently have succeeded in identifying a neural component to the itch sensation and its scratch response. In 2009, neuroscientists at the University of Minnesota identified part of the mechanism by which scratch relieves an itch. They showed that relief takes place deep within the spinal cord along the spinothalamic tract. The STT transmits information about sensations, such as pain, temperature, touch—and, it turns out, itch—to the thalamus, deep within the brain. This relays the information to the brain’s center for perceptual awareness, the sensory cortex.
In their study, the researchers monitored spinal nerve activity in monkeys whose lower limbs had been exposed to itch-inducing histamine. With each exposure, the monkeys’ STT neurons went wild. But when the scientists used a device that mimics monkey fingers to scratch the itchy limbs, they saw a dramatic drop in STT neuronal activity. This sudden drop suggests that the act of scratching calmed the STT neurons.
In a recent study published in the journal Neuron, Ma identified a neural component necessary for the pain sensation and itch suppression that also may help answer the “why do we itch?” question. This component is VGLUT2-dependent synaptic glutamate, a molecule that is released from certain sensory neurons and that serves as a transport for glutamate, the most abundant neurotransmitter in the brain. Ma came across this pain–itch dualism unexpectedly, while monitoring the behavior of mice that had been genetically altered to lose the action of VGLUT2 in a group of peripheral sensory neurons. He discovered VGLUT2-deficient mice developed itch disorders as severe as those found in humans with chronic itch disorders. Essentially, Ma’s research team had created a mouse model that mimics some types of chronic itch in human patients.
“Removing VGLUT2 from pain-related sensory neurons in these mice weakened their responses to acute and chronic pain and caused the sensitization of multiple itch pathways,” says Ma. “The mice began to scratch until they developed skin lesions.”
The VGLUT2 pathway, says Ma, likely quells excessive itching by activating certain inhibitory neurons in the spinal cord or brain.
Insatiable itch
Common itches brought on by a chemical or mechanical stimulus—think mosquito bites and poison ivy—can be treated readily with agents that counteract histamine, a chemical the body produces to fight allergic reactions. A mosquito bite causes the body to release histamine in the area of the bite, turning the skin red and itchy. An antihistamine relieves the itch sensation by preventing histamine from binding to itch-instigating receptors in the skin.
Widespread itch, by contrast, is often caused by diseases of internal organs. More than 80 percent of chronic kidney disease patients have chronic, widespread itch, and some patients with liver disease and non-Hodgkin’s lymphoma also suffer from severe itch. Certain pain medications, such as opiates, can also trigger itching.
Neuropathic itch is a different kind of chronic itch caused by a malfunction of nerve cells. It appears in many of the same conditions that can cause chronic neuropathic pain, including shingles, a very common viral infection. The complications of shingles are a focus of study for Oaklander in her laboratory at the Nerve Injury Unit of Massachusetts General Hospital. Other conditions that can spur neuropathic itch include spinal cord lesions, brain tumors, and phantom limb syndrome.
“Neuropathic itch is ultimately caused by inappropriate firing of itch neurons in the central nervous system,” says Oaklander. “People with chronic itch often feel as if insects are crawling all over them.”
Few remedies are available for generalized or neuropathic itch. A new drug on the market, Remitch (nalfurafine), was developed to reduce itching in hemodialysis patients, and may also prove effective for other types of chronic itch that don’t respond to antihistamines. This treatment is based on paradoxical clinical observations: Morphine, which triggers a response in certain opioid receptors in the brain, suppresses pain but causes itch, while nalfurafine, which triggers action in another set of opioid receptors, suppresses itch. It is conceivable that a combination of morphine and nalfurafine might relieve pain without causing itch side effects. And, if scientists manage to develop compounds that activate the inhibitory pathway discovered by Ma and his colleagues, “we would have a completely novel strategy to treat itch,” he says.
“Scratching,” said the sixteenth-century French essayist Montaigne, “is one of the sweetest gratifications of nature and as ready at hand as any. But repentance follows too annoyingly close at its heels.”
Now that the scientific community’s view of itch has evolved to the point where it’s considered a bona fide and potentially serious clinical condition, people who suffer as Montaigne did—his eczema caused him to scratch incessantly—may finally find some relief.
This article appeared in the Summer 2011 issue of On The Brain.
HARVARD MEDICAL SCHOOL CONTACT:
Ann Marie Menting
ann_menting@hms.harvard.edu
617-432-7764

For the curious nonscientist, On The Brain deciphers how the human brain works by highlighting the leading-edge research of neuroscientists at Harvard Medical School and its affiliated teaching hospitals. The thrice-annual newsletter, produced through the Office of Communications and External Relations, is sponsored by the Harvard Mahoney Neuroscience Institute.

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Slightly off topic, however would appreciate any responses. Do you have any knowledge whether or not any GD sufferers have tried Medicinal Cannabis for relief, in those States where it is legal. I am in Australia and legality is limited to some States for defined conditions only. Thanks and regards.

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@billjim651

Slightly off topic, however would appreciate any responses. Do you have any knowledge whether or not any GD sufferers have tried Medicinal Cannabis for relief, in those States where it is legal. I am in Australia and legality is limited to some States for defined conditions only. Thanks and regards.

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sorry, no

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@billjim651

Slightly off topic, however would appreciate any responses. Do you have any knowledge whether or not any GD sufferers have tried Medicinal Cannabis for relief, in those States where it is legal. I am in Australia and legality is limited to some States for defined conditions only. Thanks and regards.

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I have not tried "medical cannabis", doctor prescribed, but have taken CBD oil in the past and it has no effect. Cilantro smoothies, lysine, and what ever topical works for you are your best bet. I advise you to go back and look at past blogs on this site. There is a wealth of information here, especially from gardeningjunkie's blogs. She knows more about this disease than almost any doctor.

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nodgabnoj- I'm glad that sharing my journey with GD is helping some. Those of us that understand this misery without known medical treatments are forced to experiment seeking solutions.Three years ago I did try CBD oil for over a year hoping it might help with joint and arthritis pain. I tried the full spectrum and other types, all expensive and never felt one bit of difference. It certainly made no difference with pain levels. I had active GD then on and off and active internal Allergic Contact Dermatitis skin issues and noticed no difference. I have friends that swear by it but my experience was like yours, CBD oil taken internally did not help to me in any way..
When miserable with GD we have to think outside the box trying to get control over our GD. I never considered MJ because it made no sense to me that it could help.
My question for those that do smoke MJ for pain relief is based upon personal experience smoking it 50 years ago; it intensified sensations. Just eating certain foods, for example, a bowl of jello would be an exciting visual and tactile adventure in the mouth and a delight for hyper sensitive taste buds, watching a TV commercial of a dog eating dog food was a profound experience, skin felt wonderful to be touched; way beyond the way it felt not being stoned. Wouldn't burning, itching and painful skin feel worse? I was in college, young and healthy without aches and pains and great skin and not dealing with pain. I only smoked it for 2 months realizing it was making me lazy and being ambitious it wasn't going to work for me if I wanted to succeed. I liked it too much! So ended this adventure and never been tempted since.
Wouldn't MJ intensify the itching, sensitivity and pain with GD and make a break out feel worse? MJ can make you tired and want to sleep and that could be a help. I'd like to know.

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@gardeningjunkie

nodgabnoj- I'm glad that sharing my journey with GD is helping some. Those of us that understand this misery without known medical treatments are forced to experiment seeking solutions.Three years ago I did try CBD oil for over a year hoping it might help with joint and arthritis pain. I tried the full spectrum and other types, all expensive and never felt one bit of difference. It certainly made no difference with pain levels. I had active GD then on and off and active internal Allergic Contact Dermatitis skin issues and noticed no difference. I have friends that swear by it but my experience was like yours, CBD oil taken internally did not help to me in any way..
When miserable with GD we have to think outside the box trying to get control over our GD. I never considered MJ because it made no sense to me that it could help.
My question for those that do smoke MJ for pain relief is based upon personal experience smoking it 50 years ago; it intensified sensations. Just eating certain foods, for example, a bowl of jello would be an exciting visual and tactile adventure in the mouth and a delight for hyper sensitive taste buds, watching a TV commercial of a dog eating dog food was a profound experience, skin felt wonderful to be touched; way beyond the way it felt not being stoned. Wouldn't burning, itching and painful skin feel worse? I was in college, young and healthy without aches and pains and great skin and not dealing with pain. I only smoked it for 2 months realizing it was making me lazy and being ambitious it wasn't going to work for me if I wanted to succeed. I liked it too much! So ended this adventure and never been tempted since.
Wouldn't MJ intensify the itching, sensitivity and pain with GD and make a break out feel worse? MJ can make you tired and want to sleep and that could be a help. I'd like to know.

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I have tried CBD oil to help with sleep - it did nothing for me. I tried MJ in my 20s but it made me unable to function for 3 days and I never had 3 days to kill, so I didn't use it. Now in my 70's I worry about my most precious possession, my memory, and I don't want to risk losing that. It's legal in OR, so no issue there. I've had friends who have used MJ for serious pain and it was great and much better than narcotics with no serious side effects. My daughter had IBS and used it to help her sleep through the pain. I don't know anyone who has used it for itching though.

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In reply to @jamesbmakos "sorry, no" + (show)
@jamesbmakos

Thanks for your response.

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@nodgabnoj

I have not tried "medical cannabis", doctor prescribed, but have taken CBD oil in the past and it has no effect. Cilantro smoothies, lysine, and what ever topical works for you are your best bet. I advise you to go back and look at past blogs on this site. There is a wealth of information here, especially from gardeningjunkie's blogs. She knows more about this disease than almost any doctor.

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I have a large file of screen grabs of previous posts by kimass1 and gardenjunkie on the subject and believe there is more info here than what is known by all the Dermo's in Brisbane AUS. The GP's are no better, just issue certificates for betamethasone valerate and any number of relaxants for sleep problem. If I mention Prednisone for short term relief so that a decent sleep occasionally would put me in a better frame of mind to handle the discomfort - shock, horror. Looks like Cilantro will be the way to go.

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