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

@gardeningjunkie You have been my angel over the past year year and a half as well. You gave me encouragement and insights and kept me going when I was at my lowest! The pain, lack of sleep and discomfort of this disease can be absolutely unbearable at times and you kept me hanging on until I finally found what worked for me. I was MORE than happy to share. I am so glad I was able to return the favor <3

Thanks, that’s the best article on the mites I have seen.

Hi all! It's been a long time since I have written. I'm the one with the hubs with grovers. I thought I'd share our story, real quick. This started about 2 years ago. Diagnosis was fairly quick, but strange as we had been dealing with (sorry for the graphic truth) a ton of sex (we've been married for 14 years). I got a yeast infection, we both got thrush, then the Grover's started. He had luck with the Vitamin A, but after stopping the high dose, it came right back. No creams worked. Then he started to get another rash. When he scratched it, it welted and then got hives all over it. He was then diagnosed with demographia. It's all so strange because there seems to be a systemic thing going on to make his largest organ suddenly have tons of problems. We (my hubs, kids and I) wish every day for all this to go away as quickly as it came. Unfortunately, we did the cilantro smoothies every day for about 5 months and it never helped (and was a pain in my ass). lol!

Just like with most forms of eczema we respond differently to treatments. We also seem to have variable triggers. We also have variations in symptoms, for example with GD some have mild itching, some have no pain and although the standard rash area is torso some also get it up the hair line or down the arms and legs. I have seen photos and even the rash papuales are not the same size for all of us.
Has a sugar free diet (which kills residual yeast residing in colon that raised the inflamation in your body) been tried? It definetly helped calm one of my other forms of eczema. The cilantro did work for me with GD, but I had also been on the sugar free diet for a year and perhaps that made a difference. It takes months to kill off all the yeast and yeast is easily resurrected if yeast fueling foods are reintroduced. Read The Yeast Connection Handbook by William Crook MD. Available on the internet, Amazon. Not complicated like the Karen Fischer diet for eczema and also the book is cheap compared to hers.
This diet calmed my internal skin so much I no longer required my annual corticosteroid shot to stop the relentless internal burning, zapping and stinging, yet it only helped for about 10 months before it would build up again and require the shot again. A treatment, not a solution.

I came across this article on MedPage recently about dermatologists prescribing gabapentin and pregabalin for chronic itch. Might be helpful for some sufferers of Grover's disease. The article is pretty lengthy so I have only posted a portion, the full article is available here:
https://www.medpagetoday.com/reading-room/aad/general-dermatology/85360
Drugs You Never Thought You'd Use in Dermatology
by MedPage Today Staff
March 11, 2020

Young dermatologists quickly become familiar with mainstays of treatment such as antibiotics, corticosteroids, and antihistamines. However, when those therapies fail, or when conditions dictate a novel approach, less common agents can play a key role in the treatment of acne, rosacea, pruritis, and other skin disorders. Four dermatologists detail their experiences and research in treating select patients with the following drugs:

Gabapentin and pregabalin
Ivermectin
Spironolactone
Naltrexone

Attacking chronic itch: Gabapentin and Pregabalin

The two anticonvulsant medications gabapentin and pregabalin, which have been used to manage chronic pain, are also proving effective in the treatment of selected types of chronic itch.

"Chronic pain and chronic itch have a lot of similarities," said Gil Yosipovitch, MD, professor of dermatology at the University of Miami Miller School of Medicine and director of the Miami Itch Center. "This is one of the mainstay treatments that I use for patients who have chronic itch of different types."

Yosipovitch cited neuropathic itch, a result of nerve damage, and itch caused by neural sensitization as two types that respond well to gabapentin and pregabalin. "People with atopic dermatitis, for example, have a neural sensitization phenomenon, meaning the nerves are hyperactive -- they're very sensitive, and they fire more than a normal nerve," he explained. "What the GABAergic drugs do is reduce that hyperactivity. They were designed initially for epilepsy, where there's a lot of electric activity of the nerves. They're now prescribed for many different kinds of pain, so it makes sense to use them in chronic itch associated with neural sensitization, as well as for neuropathic itch."

I was not going to post again until my stupid GD was gone, but as sometimes happens with medical research, the study was terminated because of dramatic results. I have been tricked before into thinking something was effective when it wasn't, but this time, I think it's for real. I am one of the people for whom cilantro and chlorella were not effective for my GD. I still take them as I think they are beneficial to take (as are some of the other supplements I have tried during the course of this ordeal.) I was getting progressively worse, despite all my efforts to follow the advice given on this site, short of steroids. I am grateful to markopolo for posting the possible connection between Demodex mites and GD. I did my own research on Demodex mites and found that several essential oils were effective against these in a Petri dish. The trick is to expose the mites to the essential oils. They live with their heads stuck in hair follicles, and apparently only become symptomatic when there are 5 mites per follicle. (So offensive to even consider!!!) They apparently come out at night to mate and party on your skin. That explains why I can feel okay and then lie down to sleep and it feels like creepy crawly things are all over my back...because it's true! The oils that have been found to be effective are tea tree, peppermint, clove, and sativa. I bought all 4 and did my own experiments. The clove oil was hands down, the winner. It has the added benefit of burning/numbing your skin very much like the Bengay I had been using for the itch. I tried it with hemp seed and then grape seed oil as carriers. It worked a little, but I was still suffering terribly at night, and it wasn't going away fast enough for me. Then I put the clove oil full strength on my back and on the most active other areas. I went to bed and felt the creepy crawly itchy feeling, and just waited. In 5 minutes, all activity ceased. Slept through the night with no problem. Lest you think this was the end of my ordeal - it wasn't. The life cycle of the mite tells you that you will not be out of the woods for a couple of months at least. There are new eggs hatching every day and those newbies have to come out of the follicle to be properly exposed to the essential oil. I have had some ups and down during the past two weeks, but have now been 3 nights with no itching. I wake up with a slightly itchy feeling - like a tickling feeling all over my torso just from contact with my cotton turtleneck I wear to bed. After I take a shower, scrub my skin with my silicone scrubber and reapply the oil, no itching. If I exercise, I shower or wipe down right after and reapply oil. I have taken to using the carrier oils on areas that are not as active, and full strength on my back and on most active areas. There is still a slightly bumpiness on my right shoulder and around my neck, but it is improving steadily. When I started with the clove oil, my GD had effected my entire torso from my earlobes down to my pubic and was starting to creep into my genital area. I was having to slather myself with Bengay several times a night. I have just getting progressively worse by the day. The clove oil turned the tide. I now have hope that I can control these beasts. Apparently up to 100% of older people have Demodex mites on their skin. It was thought that only people who are immunocompromised become symptomatic, but it is becoming apparent that is not true. It is apparent to me that GD is not a disease, but a cluster of symptoms which can have a variety of causes. I realize now that I probably have had this problem for several years. I never had a rash, but I had a very itchy back and would have my husband slather it with coconut oil every night. That often made the itching worse and I couldn't underhand it because I assumed the itch was from dry skin. Turns out the mites just love oil!!! Yummy to them. That is why I continue to treat my back with full strength clove oil, even though clear of bumps. It is probably the most intractable area. I saw that old lady itchy back is condition written about in the medical literature. Derms always assume, as I did, that it's just dryness, but I'm thinking given the Demodex mites' enjoyment of older people, that it's not dryness that is causing old ladies to itch. I might have to continue using the clove oil or alternate with tea tree in a carrier oil as a maintenance treatment after the core of these symptoms are gone. Anyway, I am encouraged by this progress and wanted to share. As always, I am grateful to all of you for sharing your experiences!

Now I am wondering. I don't feel any sensation with respect to something crawling on my skin, but the itching is worse at night. Going to try the clove oil to see if there is any effect. To anybody out there who chokes down the cilantro smoothies as I did for months, the secret to making them palatable is fruit, honey, and bananas. For some reason the bananas really mask the cilantro flavor. Also, and this is important, run your blender on high until the cilantro is almost invisible. I also use plain, unflavored yogurt at times. After making the smoothies this way, they are almost enjoyable !! Thanks Babbs for your incredibly informative posts. They are really helpful.

I have been drinking frozen fruit/non-fat Greek yogurt, vanilla protein powder smoothies for years, so cilantro (and I also add kale) were easy to add to my diet. I also put my other supplements in it since I can't swallow pills. The tartness of the frozen fruit including pineapple, mixed berries and sometime, mangoes totally masks the taste of anything else. great way to start the day!

Could be the mite issue some are mentioning but if you research on the internet you will read that our histamine levels are dramatically higher at night. Also when we lay in bed we are not distracted so we notice our skin sensations more. I not only have GD but 2 other forms of eczema and when symptomatic all forms were worse at night. Right now symptom free of all 3 types I have no itching at night. I do find the areas where GD outbreaks have been do itch if I get sweaty. So once I get inside I shower and the itch and burn subsides. Maybe the salt in sweat affects our GD weakened skin barriers?

I tried to edit and add to my post, but somehow, it didn't happen. I just want to warn you that the improvement with using clove oil was not a straight line. If you do have demotex mites, when they die, they release a lot of irritants into your skin that causes you to look and feel worse. That happens before you are better, and when it happened to me, I had to use my anti-itch stuff (Bengay, in my case) until it got better again. It has taken two weeks until I am finally responding more consistently with less symptoms. However there are still new "outcroppings" that I have to zap with clove oil as soon as I detect them, and I'm still using full strength clove oil on my back and more active areas. I am certain I will have to be vigilant for at least two months. On the plus side, I brought my car in for repairs today and the account person came running out to me and asked me why my car smells so yummy. Without going into the gross particulars, I explained I was drenched in clove oil, so it smells like Christmas in my car, LOL.