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

In regard to the cilantro: Has anyone ever had a negative reaction to it? Keep in mind, smoothies are fairly new to me, so it might just be my body having a reaction to the sudden boost in fruit and vegetables, but every time I drink a smoothie, I feel very fatigued afterward. Like something with my body just isn’t right and this seems to persist throughout the day. I know that the sugar could possibly make my blood sugar spike, but I regularly have drinks or foods that have way more sugar than the frozen fruits and vegetables that I put into my smoothie. Which has me wondering if maybe the cilantro is doing something funny?

I researched and did find some negative affects that can occur, but am curious if anyone else has experienced this. I seriously doubt it's fruits and vegetables. While my intake of both has obviously increased with my smoothies, it's not like my body has been void of those prior. Cilantro is really the only strange thing I've introduced into my diet - especially in such a large quantity (half-bunch).

Hello @ccamargo82

Interesting question about Cilantro.

I did find some information about the side effects of this from a reliable website healthline.com. Here is the link, https://www.healthline.com/health/cilantro-allergy.

You do not mention what type of problems you are having that might be related to the use of such a large quantity of cilantro. Have you considered using less cilantro in your smoothies to see if this helps?

I look forward to hearing from you again. Will you post an update when it is convenient for you?

The side effects I experienced were fatigue, inability to focus, and intense bouts of hunger coupled with diarrhea. But I have struggled with IBS-like symptoms for years. Although it comes off as an inconvenience, it’s never really affected me in a physical way. You just go when you go. I’ve never felt fatigued or dizzy because of it.

All I know is that for the last few mornings, I feel good until I drink the cilantro smoothie, and then for the rest of the day, I feel off. Like my body is either lacking or has too much of something that it shouldn’t. I actually went to the doctor for a blood test because I was very concerned that something was wrong with me. My girlfriend is convinced that it is the cilantro, but really have no way of knowing without eliminating it from my smoothies and monitoring how I feel for the next few days. Which is what I am starting today. Same smoothie recipe, sans the cilantro.

@ccamargo82 I will be interested to hear if you feel better without the cilantro.

Will you post again with an update!

Cilantro is often used by herbalists for detoxifying the body of accumulated heavy metals, and any detox process can cause your body to have a temporary bad reaction. Perhaps that is what is going on with you? If you do an internet search for "cilantro for detox", you will come up with tons of info if you want to check out this possibility. Good luck!

I wanted to update you guys on something. Today, I received a call from my dermatologist, as he knows how frustrated I’ve become with my lack of progress with my GD. It’s actually gotten much worse within the last few days (and this is with applying zinc oxide to help with the heat). The spots were previously confined to just my chest and stomach, but has now started to spread to my clavicles and is slowly starting to work its way to the sides of my neck. It’s almost like me “talking” about it and experimenting with other treatments (e.g. cilantro and zinc oxide) did more harm than good, although I'm sure it's probably just the ridiculous Phoenix heat). It has also spread to my ribs/flanks, which were areas that were relatively clean until just a few days ago.

Anyway, my original dermatologist, who previously prescribed acitretin and calcipotriene called me today (a strange coincidence). Probably because I never followed-up with him at the beginning of June. He told me about another treatment option based on a recent study that he read that involved injections of Dupixent (Dupilumad). For those unfamiliar, it’s a monoclonal antibody, which is often used in the treatment of eczema, as well as various other things such as asthma in children age six and above. A recent study was done in January 2021 where they tested five patients that had persistent GD and had exhausted all topical and oral medication options. All five patients were cleared of their GD as the result of the injections, which are taken every two weeks. He feels that this is a much more hopeful treatment plan as opposed to prescribing more medications - which he knows I no longer want to take.

I received two injections today (one in each side of my stomach). I will return in two weeks for two additional injections and then, provided insurance clears it, will be able to do it myself from home.

No blood monitoring will be needed and he told me it’s a much safer option than the steroids or retinoids that are commonly prescribed. He did warn me that 15% of people experience this eye issue that causes redness (I forget the medical term) He said if this happens, to contact them and some eye drops can be prescribed.

Not a lot of research has been done on using Dupixent for Grover’s with the exception of this one study. I have linked it below, but I think it’s only available on a pay site.

I’m trying to stay positive, but at this point, I’ve become so frustrated that I’m willing to try anything. I will continue taking calci to combat itching, but will probably just use gold bond when this is depleted since it’s much cheaper since the calci tubes are 30 dollars with my insurance and don’t last very long given how much area I’m now having to cover.

Anyway, I will keep you guys updated on if the Dupixent results in any improvement.

That is very interesting information and thanks for letting us know. Please keep us in the loop as you go forward.
I think most of us understand that feeling of being so frustrated you'll try anything. Good luck!

I finally took the time today to go back and read all the forum posts from Feb. of 2019 to the present. It took HOURS, but there was indeed a wealth of information. As far as cilantro is concerned, I agree that the capsules may not be a viable option. Fresh cilantro in smoothies obviously works well for some people (about 50%?) and I will try that route eventually if my experiment with the drops doesn't work, but the intensity of my Grover's has definitely diminished since I started them on 6/9. I doubt if all cilantro drops are created equal. These are made by HerbPharm in Williams, OR and the cilantro used is USDA Organic and Certified Organic by Organic Certifiers which may be an advantage over cilantro found in grocery stores in that at least I can be sure that I am not ingesting any pesticides. They are highly effective according to the Amazon reviews, but effective against GD? Who knows? I also will soon start taking the Now Foods Chlorella and am considering ordering the FLANAX and maybe Lysine since I've had herpes way back when, but supposedly the virus hides in your body forever. I also found your very liberal usage of witch hazel after showering to be intriguing and will give that a shot too. I have used it in a spray bottle in the past, but perhaps not liberally enough. Also, I will definitely NOT be getting the Shingles vaccine! YIKES! Thanks so much for sticking around on the forum even after your GD has gone into remission, which I hope is permanent for you!

An unexpected finding: a member of the Facebook GD support group had posted that she was taking selenium. Her GD was in remission. She, for some reason, stopped the selenium and her GD came back. Went back on selenium and GD went back into remission. That was interesting to me because I've been traveling and forgot my Brazil nuts which I take for selenium (1 per day) and my GD was rearing its ugly head. I didn't make the connection, but when I read that, I went to the store and got some Brazil nuts, went back to one a day and the GD receded but didn't disappear completely. So then I went back to the literature to see what levels of selenium are safe and found that 400 mcg is the upper limit. Brazil nuts are about 90 mcg per nut. So now I am taking two Brazil nuts per day and I will see if that does more than the one nut per day. Stay tuned. As an aside, I had been taking hyaluronic acid - approximately 100 mg/day. I upped it to 200 mg a day because my knees were bothering me. My facial skin looks so great, I look like I've had a face lift. Crazy. Going to stay at this level. I use the Bulk Supplements HA powder. (I can't swallow pills.) ⅛ teaspoon dissolved in water the night before is a bit over 200 mg. It has zero flavor but takes about 12 hours to dissolve fully in water. Forest Leaf HA pills are also good. You only want high molecular weight HA (low molecular weight HA is pro-inflammatory. High molecular weight is anti-inflammatory.)

I wonder how many of us have herpes simplex since this is related to shingles. I get cold sores from stress, sun and being sick. Anyone else?