Ending Antihistamine Diet

 Day 28: ending two weeks of the antihistamine diet

It's been about two weeks since I started the anti histamine diet and I am so ready to come off of it. As I predicted, it didn't make much of an impact because I was ALREADY eating really low in triggers. I knew going into this that alcohol and sugar are the WORST for my skin. Stress and dry air (winter in particular) also don't help. Here is my skin at the two week mark: this is my usual "resting" state. 

I remained at 142 pounds, and I felt more bloated overall thanks to the evening primrose/OMEGA pills I had to start taking. I played with when I took them and I think they are best taken with dinner, as taken with lunch I rarely felt hungry for dinner 4-5 hours later. 

Cutting out gluten was the WORST. I have a few friends that are gluten free and I have to say I'm so sorry, the impact gluten has on my routine for quick satisfying foods is really incompatible. Granted, a lot of people pity me my lack of dairy but that I never seem to miss. 

I think I will carry forward less soy milk products; not a huge difference in my blemishes and redness, but enough to continue to minimize it and not drink it in my coffee/tea/cereal/as a milk substitute. I like having both almond and oatmilk options in my fridge as it depends on what I want to do with it IE cook with oatmilk, drink almond milk.

I did have a two drink night with dinner after a stressful day of finding out my grandparents are not doing well and I have to make an emergency trip out east - and that night I had a hard time staying asleep with a 4 am panic attack. For me it seems one drink is fine, as long as it's not red wine. But if I have red wine or more than one = 4 AM wide awake sore stomach and panic. *sigh the joys of sipping red wine with my fiancé are pretty much gone :(

And on that note - I am flying off to the Maritimes to be with my Grandparents for a time and I won't be able to keep this up so the ending will be abrupt and I'm sure to get a scolding from the doctors when I return for my visit in two weeks time. Oh well. Life, rather, death, happens. 

Day 14: Check in and starting new antihistamine diet

 

Day 14: The Check Up

After logging my diet for two weeks and being mindful of the way I eat, now I get to do the antihistamine diet. It looks a lot like the elimination diet I did 13 years ago...

Here is my list for the next two weeks. I'm avoiding high histamine foods such as:

And I have these as "prescriptions"

Supplement prescription #1

Used for: Supporting skin health

Name: High EPA Omega-3

Brand: Aqua Omega

Dose: 2 capsules

Route: Orally

Frequency: Twice daily

Additional Instructions: Start by taking 2 capsules once per day with your meals. After 3 days, if well-tolerated, increase to 2 capsules twice per day. Take for minimum of 3 months. Discontinue prior to any surgery as omega-3 increase blood thinning. Discontinue if you experience any adverse effects.

Available here: https://well.ca/products/aquaomega-high-epa-omega-3-fish-oil_153476.html

Supplement Prescription #2

Used for: Essential fatty acid that supports skin health

Name: EPO SAP

Brand: NFH

Dose: 1 capsule

Route: by mouth

Frequency: once daily

Additional Instructions: Can be found at healthy planet. Some side effects include upset stomach, stomach pain, headaches, & soft stools.

Body wash:

Used for: Supporting healthy skin & restoring skin barrier

Name: SA Body Wash for Rough & Bumpy Skin

Brand:CeraVe

Dose: 1-2 drops

Route: Topically

Frequency: when needed (during baths or showers)

Additional Instructions: Massage body wash into skin during showers/baths & rinse. Can be found at shoppers drug mart or on amazon: https://www.amazon.ca/CeraVe-Salicylic-Cleanse-Exfoliate-Rough/dp/B077TWXCQV/ref=asc_df_B077TWXCQV/?tag=googleshopc0c-20&linkCode=df0&hvadid=336235023036&hvpos=&hvnetw=g&hvrand=10326168048758910330&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9000908&hvtargid=pla-527480207483&psc=1

Check in:

weight: 142

skin is... pretty clear actually! I went back on CBD 15mg a day as the existential dread won out. And it isn't making my skin crazy but it sure does make my eyes itchy and nose full. So very allergic, but hey, I'd rather itchy eyes than all the fallout of the side effects of an anti-anxiety pill. 

This is as good as my skin usually gets, I just woke up too so after a full night's sleep (thank you valerian in my tea) my skin is as rested as me:

thighs are very clear from 2 weeks ago

left shoulder

right shoulder

Darier's White Disorder and wearing COVID-19 face masks

I have been seeing some people talk about how they hate that their new mask wearing routine is making their DWD freak out! I have been having a good reaction to Kiehls Ultra Face Cream and SoonJung creams (as mentioned in a previous blog). It feels nice, no burn, and has really helped create a barrier to the friction of the mask.

Here is more on them:

https://www.etudehouse.com/int/en/index.php/collections/soonjung.html


https://www.kiehls.ca/en/skincare/category/moisturizers/ultra-facial-cream-622.html



And from that time I talked about Black African Soap: http://fightagainstdariersdisease.blogspot.com/2020/02/trying-african-black-soap.html

And that time I talked about trying Korean Beauty Products: http://fightagainstdariersdisease.blogspot.com/2020/01/while-in-korea-beauty-and-skin-products.html

Trying African Black Soap: For acne and Darier's White Disorder

Fun fact: going off pill form birth control and onto a dipped IUD has changed the way my body deals with my hormones and that means my DWD has changed over the past few years, but recently it has changed AGAIN - but it's not exactly the Darier's that's upsetting... it's ACNE?! 

I'm too old for this crap!

I asked my dermatologist what a raw, red, crusted (sounds like DWD!) but with white heads was all about and she confirmed my suspicion: that's not a break out that's acne. GREAT.

So I leaned into some postings in the Darier's White Facebook Group about African Black Soap, this is the one I found and used:

From Mama's Life Product's website:

What it does

Helps remove scars, suitable for all skin types, assists in removing makeup, delays aging of skin, and removes extra oil from skin, excellent for razor bumps and in-grown hairs. Rich in Vitamins A, E & Iron, Revered for having skin nourishing benefits due to an abundance of antioxidants.

How to use it

You can use the Black Soap for showering, bathing, washing your hands, hair and face. Take the Black Soap apart and knead it into a ball to make sure there aren’t any jagged edges, and rub between hands to work into lather.

Key Ingredients & Benefits

100% Unrefined Raw Shea Butter: Shea Butter can be used to treat all of the following skin conditions: Dry Skin, Eczema, Infant Eczema, Stretch Mark Prevention & Minimization, Psoriasis, Arthritis & Rheumatism, Wrinkle Prevention, Diaper Rash, Muscle Fatigue, Scar Minimization & Skin Discolorations, Dry Hair & Scalp and as a natural shaving agent. Shea Butter has been used for centuries for its amazing abilities to renew, repair, and protect the skin. Shea Butter helps to alleviate eczema, soothes sunburn, minimizes stretch marks, long lasting moisturizer, rich in vitamin E, A, and F.

Roasted Plantain Skin: Helps to remove foreign objects and particles from the body. Relieves sunburn, Helps to heal from insect bite, Aids in quicker healing of wounds, Lowers chance of scarring, Treats acne and Rosacea.

Cocoa Pod: Antioxidants, Helps reduce stretch marks, Hydrates skin deeply, Sensitive skin healer.

Coconut Oil: Vitamin E, Assist In Anti-Aging, Rich In Protein, Tissue Repair, Excellent Moisturize For Dry And Hard Skin, Excellent Exfoliant.

Palm Oil: Contains vitamin E, Great anti aging product, Helps skin fight free radicals that damage skin, Deep cleansing, Helps in prevention of skin inflammation.

---

Ingredient List: Roasted Plantain skin, cocoa pod, palm kernel oil, coconut oil, palm oil, Shea butter.

Scent: Unscented

I'm in! So I tried it for a week and I am HOOKED:

It definitely helped my raw irritated facial skin; it dried it out without making it sore and itchy. I found that doing it before bed with the Vitamin A cream worked best (in the morning I used my sensitive astringent and a moisturizer **it could be that it's winter here or just the fact that I'm using soap for the first time in ever on my face like this but my skin is thirsty for a good moisturizer. So far I'm making do with the leftovers from Korea but I will need a replacement soon! Something heavy but not oily or perfumed.... I also still did my used coffee grounds as a scrub 2x this week, and avoided the chin area/went over it lightly as it hurt so much.

No makeup in my pictures, and they were taken after washing my face with the soap. The lights are so bright that you don't really get to see how red and raw it was. 

I am going to keep this for a while and I think once my Aveeno sensitive skin wash runs out I may switch to this as an all around body wash too (though I will have to secure a good body lotion as it is drying) any suggestions on what you use for body lotion and facial moisturizer is welcome! Leave me a comment to tell me what works for you! 

While in Korea... Beauty and Skin Products from abroad

SO I recently went on a trip to South Korea and I experienced their OBSESSION with skin care. For those that live in Ontario you will understand when I say: take all the Starbucks and Tim Hortons and change those into makeup and beauty stores = that's Seoul, South Korea. They were EVERYWHERE. My travel partner and I pretty much went into every one of them (she was fascinated with their products and became a little obsessive herself!)

Now people around me know I have a skin disorder so she knew I wouldn't have as much fun playing potions class in every Etude House we came across. But I was willing to try things that were for sensitive skin... and a face mask or two because they just looked lovely! I tried a tea tree oil mask and I have to say it was GREAT! Take a look:

It was super hydrating and cooling and I never had a breakout or irritated skin after. I liked them so much I got a second pack of them to take home. Roberta, my travel buddy and makeup Yoda, recommends doing them every week (or every other week if that sounds too much to someone like me!)

I have also been trying their SoonJung line and so far after a week no bad reactions and no irritation.

I also picked up one of these (well not this exact one, I bought mine for about $3 in a Daiso in Seoul...) 

And it's a great way to not use pad products/something reusable and better for the environment PLUS it just uses warm water to take off your makeup. For me, less is better with my skin, so to just use water or a tiny bit of light soap like Neutrogena Naturals is great. I highly recommend adding this to your arsenal!

I will repost on more of the products I'm using from Korea, but so far I like how light and non-irritating they are. The makeup all include SPF too which is a necessity with me being a ginger (and the DWD). The ones I am looking forward to are: Baking Powder cleanser, more sheet masks, and this Face Blur.

Having DWD means I deal with a lot more redness and spot treatment than most, and sometimes all the products can be overwhelming so I often just... don't do anything. But it's fun to play with makeup again and build confidence around looking "pretty". It's not an everyday thing for me but having healthy skin should be - I am looking forward to learning how to clean and hydrate my skin in a helpful way as I age with DWD.

UPDATE JAN 23 2020 - I have been back for almost two weeks and I LOVE that face pad, it has become a daily ritual and so great. The SoonJung line has been nice but not exactly an improvement, but still nicely hydrating and not irritating me. The Baking Powder foam cleanser stung the first time I tried it so I steered clear of it since. The sheet masks are still my #1 favourite from this trip!

IT WORKS! An Update on how it's going

Update: all the changes and tweaks and ongoing therapy is working itself out! I'm not "cured" or anything but it is a helluva lot better than a few months ago when I had to hide under scarves and cry from the pain...

Right now this is what it looks like:

 

Not too shabby! Of course the pink bumps are never going to be completely gone (or never say never? *hopeful*) but this is so much better than the red rash and open weeping sores I had this winter.

SO! What is my line-up of therapy and goods to bring my DWD under control? I'm so glad you asked:

-no cow dairy
-the least amount of sugar
-lots of water
*I do drink coffee, tea, and drink cider and wine but always in moderation/occasionally






Daily
-50 mg Pine Bark Extract pill
-Vitamin B (either B2 100 mg or a B100 complex) pill
-15 mg zinc pill
-100 mg magnesium (doctor said it will help with my headaches)
-lavender pillow mist + frankincense/lavender oil mix on pulse points (great for anxiety and to sleep)
-meditation 5 mins (needing to get this up to 10 in 6 months)
-Vitamin A 10000 IU pill (at night)
-Vitamin A cream (on affected area at night)
-SPF 15 or higher (depending on season and outdoor activity but ALWAYS at least 15)

Sometimes
-Multivitamin
-Vitamin D (on cloudy/stay inside days)
-probiotics
-CBD pills for anxiety; situational
-Germolene for spot treatment (when the pink bumps become redder)

So there ya go! That's what I'm doing, remember to talk to your dermo and/or doctor or health care professional when trying new things - and on that note what is working for you?

I haven't had to use Germolene in over a week! And I am glad of it, this stuff is potent and shouldn't be used daily.

I am drinking soy milk instead of any other dairy alternative so I can try and keep my hormone levels up too, at least that's the idea - I don't know if it's helping at all but tofu and soy milk are a part of my diet since I left birth control for an IUD.

I hope this helps you on your journey to wellness!

Trying Something New Follow Up: Saje Restoral Ointment results

I have some sad news, my experiment did not go well with my last post about the Saje Restoral Skin Ointment  it didn't work for me, I tried it for a week, applying in the morning and at night. Here is the day by day:

Day 1


Day 2


Day 3



Day 4


Day 5


...and then I stopped. My skin was getting sore and irritated and hurt. So I stopped and called this a failed experiment. I couldn't make it to day six :(

I went right back to Vitamin A Cream and BOOM it was better in a few days with my pink dots rather than blistered sores like you see above.

I'm sad that it didn't help; at first it felt like it was drying out the affected area but it was really just irritating it and making them open up and be sore and weepy, which made me sore and weepy.

You never know, it may work for you but for me it just seemed to make it worse.

What creams and dietary goods are you trying? Anything new?

Protopic: Tacrolimus - I asked my Dermo

SO! A comment came through that said "New medication from my dermatologist is tacrolimus ointment. Calms everything down and doesn't have any side effects. A lot of the drugs and creams actually make you itch worse." Thanks for sharing Charlene!

I asked my dermo about it and she said the (paraphrasing) following:

It's "street name" is Protopic, and it's a non-steroid cream so unlike Accutane dermatologists can offer it to people like us with little worry because the extended use of creams for us (as we are lifers with DWD) is okay without the nasty side effects of steroids (hair loss, weight gain/loss...)

I didn't pick any up because it's new and exciting which means = $ expensive $

And you need a prescription for it (why if it has little to no side effects and doesn't have steroids?!) 

It sounds like something I might be interested in a few years when the hype dies down and I hit my 40s. 

Here's what the internet says: 

This form of tacrolimus is used on the skin to treat a skin condition called eczema(atopic dermatitis) in patients who have not responded well to (or should not use) other eczema medications. Tacrolimus belongs to a class of drugs known as topical calcineurin inhibitors (TCIs).

And another write up from Rexall:

Tacrolimus belongs to the class of medications called immunosuppressants. This medication is used on a short-term or intermittent basis to treat atopic dermatitis (eczema). It is also used to prevent eczema flare-ups.This medication works on certain areas of the immune system that may be involved in developing this skin condition. It is used when standard treatments have not worked or if there is a reason they cannot be used.

SO! Charlene and anyone else willing to tell us about how their use of Protopic/Tacrolimus is going? Any reviews?

Finding stuff online

So I'm not new to the online world (hi, this is a blog) BUT I don't know why I haven't fallen in love with things like digg and reddit.

Well I may now!

http://www.reddit.com/r/skincareaddiction

Here is a very active list of online users who just talk about SKIN!

Have you posted there? Do you use this site? I feel like I should make it a habit to check it out a few times a month if not more.

Let me know where you hang out for info online, I would love to make a bookmark list of cool sites.

First post here but not ever!

I used to belong to a website called skinpatientalliance.ca but it shut down so I couldn't get to my posts or reply or anything... So here is my own blog to help raise awareness of Darier's White Disorder or Dariers Disease or DD.

I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P

I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site. 

Enjoy and hope to hear from you!
 --------------------------------------------------------------------------------------

 Forum Post:

Darier's DiseaseView Edit Outline

I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html

And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".

After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should.  I was given Retin A cream and to stay out of the sun.  Not that much to go on and of course, nothing really changed.

I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic  and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of.  True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.

They started me on:

B6 complex 1x 250mg/day
Fish Oil  1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet

because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance.  This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.

My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!

I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!







General Discussion Ontario

Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.

I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.

Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.

I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.

Thanks for letting an "Old Lady" vent!

Mary Lou

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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
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Hair Transplants India
Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.

HARRY

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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon

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look down, I posted twice
look down, I posted twice and there is no delete option!

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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.

Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.

I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)

I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.

My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.

A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.

Will report on the vitamin a substitute

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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:

Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.

Naturopath said:

Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.

Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin

Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.

Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**

Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk

Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.

I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.

And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.

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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"

WHAT?! Why would it do that?!

My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.

So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.

Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.

You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212

I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...

I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.

I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!

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July 10 2009
New pictures are up -

Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!

talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.

I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?

Still haven't braved the B12 injections...

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August 2009
If I had one thing to say it would be:

THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!

I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!

I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...

turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!

I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :

"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!

I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.

Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E

On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"

best wishes and let me know if you find anything fantastic!

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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.

I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.

I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.

I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.

Thanks again everyone.

Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*

What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg

Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics

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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy

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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.

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of course!
you can email me at adriannasemail @ gmail . com

hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!

all the best,

Adri

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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/

Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!

I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.

Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.

So Happy Holidays and here is to a rash free New Year!

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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.

My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.

I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.

So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.

So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!

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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...

I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.

All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.

The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.

Hope you are all doing well ~ until next time!

Adrianna

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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.

Cindy

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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!

Mary Lou

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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?

I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...

I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.

Thanks for sharing and I hope to hear more great news from you and everyone else!

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mary lou Hello, I hope this
mary lou

Hello,

I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!

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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!

I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.

Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.

I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.

with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100

And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?

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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!

Mary Lou