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43219876x (@43219876x)

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

Skin Health | Last Active: May 14 7:33am | Replies (1483)

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@hope4cure

I really appreciate the time you are giving in response to my replies. Its the most encouragement and treatments I heard since I was diagnosed. Thank you. I will consider seeing a allergist once this corona virus is under control here in California. As for as the cilantro goes does it have to be in a smoothie? I’ve been just adding fresh to salads or whatever I’m eating. I want to try Lysine. Seems not much in the side effects and seems safe. Since I’ve been so sensitive to everything I’m a little reluctant are you aware of any adverse reactions? Also try not to be in the heat like you said about gardening(I don’t even garden anymore 😩) GD has changed my way of life. Along with my love of gardening also enjoyed the outdoors in our pool and boat. I do less of it all now. Have you heard of success with GD using uv protection clothing? I used to get high anxiety when one erupted out of no where. Now yes I do get discouraged but try not to let it affect me unless it’s one of those crazy itchy ones then it’s more challenging. Recently also trying the witch hazel. I also wanted to mention that since its been spring like conditions here even just the sunlight is triggering the bumps. Makes me want to just stay inside but know that’s not healthy physically or mentally.

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Replies to "I really appreciate the time you are giving in response to my replies. Its the most..."

I researched safety. Here is an article specific to safety: https://pubmed.ncbi.nlm.nih.gov/30661148/

6 grams (6000mg) produced GI symptoms, but no serious or concerning symptoms. I’m taking 3 grams/day. I’m a tiny person -4’11” and 96 lb. I haven’t had any side effects, except suppression of GD. 🤞still. I mix in plain yogurt or smoothie. No strong taste. I can’t swallow pills.

I have had GD for 5 years now and for whatever reason the severity's lessening. I'm not saying it is not itchy and painful when it reoccurs, just less; take heart and have hope. The first year was a 24 hour challenge for a full year. Like most know I couldn't even lay on my back in bed or lean back in chair or car. I not only had itching but extreme sensitivity and pain. I know it will return and then really go for it when symptom free,
For me the only negative side effect of the 1/2 bunch of cilantro in a smoothly daily for about 9 months was darkening of age showing up on related sun spots on my face. I had been drinking my smoothie even symptom free and then when blasting recurrence in Dec which derm decided was a reaction to my adult shingles vaccines. I gave it up. Just about the time I noticed the darkening this plaque like rash appeared so figured the cilantro had stopped helping. Google it- excess cilantro can cause skin darkening. I chose the smoothie as a way to ingest it as it was easy to mix that with fruit and yogurt in a blender and take in such a large volume, no way could I eat that much on a salad or straight. Cilantro doesn't' work for all. I was improved after a few weeks of drinking it, it may not be helping you, but unless you get the skin darkening it may have no negative side effects.
We are also boaters and yes have had to opt out many times. Not only the heat is an issue, but the bouncing putting pressure and friction on my back is painful and aggravating, I am much worse off afterwards. Friction seems as much of a trigger as any of the others.
I'm hoping you stay encouraged and believe that time will be on your side. I am not believing a cure will be found, but you will have better days ahead as the symptoms die down for a period of time and you will treasure those times.

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