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My Itchy Journey: Overcoming 10 Years of Misdiagnosed Skin Allergies

 
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christina boland eyelid dermatitis Courtesy of Christina Boland

I collect allergies like Magic Mike collects panties.

I’m allergic to everything from makeup and moisturizers to nail polishes, and yes, I’m totally going there, personal lubricants. Each of these products—even organic, hypoallergenic ones—are comprised of chemicals that cause my skin to erupt into an itchy hell.

I’m not talking about a mosquito bite itch. I’m talking about a chicken pox itch covered with poison ivy sprinkled with fire ants on top of a Jurassic-sized mosquito bite kind of itch. I lived that itch 24/7 for ten years. Yes, TEN.

I challenged my doctors to think beyond idiopathic. Some did, others were content to drug me up and call me cured.

However, I refused to quit. It took eight misdiagnoses and 19 doctors on three continents to get me to the one doctor—Dr. James A. Yiannias, Board Certified Dermatologist and Associate Professor of Dermatology at the Mayo Clinic College of Medicine in Scottsdale, Ariz.—who nailed it. I have allergic contact and atopic dermatitis: I’m allergic to chemicals and botanicals that comprise fragrances.

Diagnosing chemical allergies is tricky. It becomes exponentially harder if, like me, you have person-to-person transfer reactions. Early on, I didn’t know any of this, and neither did my doctors; they tested for every malady under the sun, everything except for chemical allergies.

Into the Itch: Years 1 & 2

My symptoms developed in early adulthood. After moving from Ohio to south Florida, I developed red, itchy, painful lumps under my left armpit. The dermatologist I saw said I had developed a sensitivity to my deodorant. His advice: Buy different deodorant. I did. None helped, some made it worse.

When the painful itchiness spread to my right armpit I also noticed a come-and-go rash-like splotch on my décolletage. The diagnosis? My skin was adjusting to its new environment and would correct itself. In the meantime, try hypoallergenic deodorant. Really? Like I hadn’t thought of that. They were all at the bottom of my waste basket.

Christina Boland decolletage
Allergic reaction on my décolletage.

Months later when it didn’t clear up, the dart throwing game began.

Armpits: Dart on hydrocortisone. This’ll clear it up.

It didn’t.

Décolletage: Dart on sunblock. Use a higher SPF.

Nope.

Don’t shave under your arms.

Seriously? Bite me.

Tea & Humors: Years 3 & 4

Itchy pits didn’t halt life. Newly married and now living in Chicago, we were about to move overseas for one year. That year turned into eight years, three continents, four countries, and 12 more doctors—all who never trusted the previous doctor’s assessment, all rerunning the same tests.

Christina Boland hand dermatitis
Hand dermatitis.

One German dermatologist said, “What you have izz a spezial kind of rosacea.” No other explanation. Excellent! Rosacea of the Special Kind.

His advice was to purchase black loose leaf tea, brew a batch, discard the liquid, cool the leaves, and wrap them in a cheesecloth, then put it on my face/décolletage, 20 minutes, twice a day. The tannic acid in the tea, he promised (though I can’t verify), would help heal my skin and alleviate the redness that was spreading from my décolletage north. To. My. Face.

I bought some Black Oolong, went home and followed the directions. A week later, nothing had changed. In hindsight, maybe it would have worked if what I had really was rosacea, but it was not.

Next specialist, please!

Dart on thyroid. Clear.

Dart on more blood work. All within normal ranges.

Dart on food allergies. You have a slight allergy to mussels and barley. Super.

It’s an idiopathic itch. All we can do is treat the symptoms. But nothing I’ve tried has treated the symptoms!

Dart on a hippy-sounding sensitivity to UV light. It’s polymorphic light eruption. Really? How does the sun reach my armpits in this sunshine-challenged European land?

NEXT.

Dart on adrenal glands. You’ve got low adrenal function. Fantastic. How does this tie in to being itchy? We’re not 100 percent sure. But let’s focus there right now.

Dart on steroids. Prednisone will zap it dead. It didn’t. Moreover, when I finished the month-long course, my itching rebounded and I broke out 50 times worse. That sometimes happens. Thanks for the heads-up, Doc, the rebound totally ruined my vacation.

Dart on more blood work. You’ve got a positive ANA (antinuclear antibody), but no other obvious signs of an autoimmune disorder. The itching will clear up on its own . . . eventually.

Those early days were like the Dark Ages. Honestly, I wouldn’t have been surprised to hear the next specialist tell me that the Ancient Greeks were back in town and that one of my four Humors was out of joint. With every passing day the itch grew worse.

Sleeping with Icepacks: Year 5

I looked like a Rorschach inkblot with full-fledged hives bilaterally dotting my neck, torso, armpits, and hairline. My eyelids swelled and burned. The circles under my eyes grew darker. The area around my mouth was rough and scaly. My scalp was on fire. My face was constantly workout red. To dull the itch, I slept covered with ice packs. But I looked fine, a bit tired, and with some powder, a dash of mascara, and some soft, loose fitting clothes, I didn’t look itchy.

Idiopathic was growing old and my faith in the medical community was waning.

They wanted to drug my itchiness away. I wanted to know the root cause. I wanted a name. I kept notes. I charted my itchiness. I took photographs. I looked for patterns. I organized an Itchy File: skin tests, photographs, lab results, diagnoses, medications on, tried, and failed, and authorizations. I was staging for battle for it had now taken over my life.

Christina itchy file
My Itchy File.

The Metamorphosis: Years 6 & 7

My big splotchy hives morphed into pimple-like papules. One red spot a quarter the size of a pomegranate seed had a 3-D itch radius of a grapefruit. Cluster 40 of those suckers together and I wanted to scratch the flesh from my body. I was never without an itchy patch somewhere on my body, most of the time I had multiple clusters.

I could now distinguish between a “regular” itch and one that would last for weeks.

Also, I had discerned a pattern. Seven to 10 days prior to my period, my itchiness would ramp up; during my cycle it would hold steady; the week following it abated; then the ramp-up would begin again. Doc, this has to mean something, right? Hormones sometimes do that. They can make symptoms—lupus, MS, itching—worse. That’s it!? Someone should test you for Autoimmune Progesterone Dermatitis. Can’t you?! It’s not in my lane; I’m sure you’ll find someone.

I fantasized about how to bottle a one-month dose and give it to my doctors. I guarantee after two weeks, they’d scour the planet seeking the root cause.

Invasion of My Girly Parts: Year 8

I came unglued when The Itch invaded my girly parts.

My.

Girly.

Parts.

I flew back to the States to see an allergy specialist in Florida. He diagnosed me with atopic dermatitis (eczema) and recommended that I take three showers a day and moisturize like I was trying to rehydrate a mummy. I did, and my symptoms EXPLODED. I’m putting in a referral for chemical patch testing.

BULLSEYE!!!

I flew home to the Netherlands and had my first chemical patch test—the European Standard Series. It was confirmed that I was allergic to six ingredients. My nemeses had names like phenoxyethanol and cocamidopropyl betaine.

I didn’t care that my doctor’s medical counsel, literally, was to “stay away” from the ingredients.

At home I cross-referenced my products with the test’s results. I was shocked: Nearly every single product in my hypoallergenic arsenal was a culprit. Eliminate, toss and replace. Easy-peasy, right? Only if you are fine with being a smelly, unwashed, greasy-haired, non-makeup wearing, unmoisturized slab of human flesh. I am not that person.

Moreover, I realized that those six chemical allergens had nearly 44 separate names. I was at a loss. I “washed” my hair with a smoothie of lemons and cucumbers (it totally works). I changed detergents, gave up fabric softener, and tried botanical products. Nothing changed. Then we moved home to the States.

Female Hysteria: Year 9

Nine months into reacclimatizing to American life I broke out worse than ever. I lost eight pounds in a month. I couldn’t eat or sleep. I waited for my newest allergy referral, then made my appointment, brought my Itchy File, and walked into the office of a dermatologist kind enough to tell me that what I had was not in his dermatologic repertoire.

His parting gift? A medical book - Contact Dermatitis, by Alexander A. Fisher, M.D., Third Edition. Here is where I learned more about allergen cross-reactors (what I began to call “siblings” and “cousins”), such as, If you’re allergic to Basalm of Peru, you may also be allergic to clove.

My knowledge of all things itchy was growing, but my patience was gone.

Tweet: My knowledge of all things itchy was growing, but my patience was gone. http://bit.ly/itchy-journey via @EmpowHER

The next specialist was a misogynistic, crotchety creature who scoffed at my Itchy File, my symptoms, and then had the stones to tell me it was “female hysteria.” I ran out of swear words, then stormed out. I’m not a crier, but I bawled. This was NOT in my head. It was all over my body. I was angry, depressed, frustrated, totally pissed off, and so, SO itchy.

Next! Rheumatologist. Nothing new. Specialized gynecologist. We’re putting you on Lupron to stop your periods in hopes it will lessen your itch symptoms. Dermatology. Biopsy. New allergist. Idiopathic itch.

I was referred to an allergist three hours away. New blood work. And a new chemical allergy patch test—the North American Standard Series. I had no idea different tests existed, and that the EU and U.S. tests target slightly different allergens. For years I had been using a mix of American and European body and beauty products. Hmm.

Bingo! Another allergy: Methylchloro- and methylisothiazolinone  preservatives found in, amongst other things, jet fuels and baby wipes.

A week later came my lab results. I was now diagnosed with CAU, chronic autoimmune urticaria (hives). Hesitant elation followed by new medications plus Xolair (allegedly an end-all-be-all treatment for CAU patients), a further culling of products, and a six-month wait-and-see period. Nada. I still had mind-numbing rashes, hives, and blistery evilness.

The Mayo Clinic, Scottsdale, Arizona: Year 10

At year 10, I was worse, but I had a team: A rheumatologist, a specialized gynecologist, an allergist, a dermatologist, and my primary care doctor. I was in doctors’ offices two-to-three times a week. Finally my team petitioned for me to go to the Mayo Clinic’s Scottsdale Campus. When I got the referral letter to see Dr. James Yiannias—I cried. If this guy couldn’t help me, no one could.

I had my Itchy File under my arm, an Evernote folder dedicated to years’ worth of rash-hivey photos, lists of failed medications and diagnoses, a request to test for autoimmune progesterone dermatitis, and a firm determination to understand the “why” behind The Itch.

I sat and talked with Dr. Yiannias for THREE HOURS. He never once checked his watch. He listened. He made notes. I told him that, through trial-and-error, I had discovered I was allergic not only to my diagnosed chemical allergens, but also to their siblings and kissing cousins. I told him that I had transfer issues, and that my husband had to use “my” products. I told him about the special kind of rosacea, the female hysteria, and my hives morphing into pimple-like papules. I told him about polymorphic light eruption and Black Oolong on my face. I told him about my symptoms spiking around my period. I told him about the European Standard Series test and its American cousin. I wasn’t leaving until I told him EVERYTHING I knew about My Itch and my journey to his office.

I told him I wanted a doctor-patient partnership, not a dictatorship. I told him I wanted my quality of life back. I told him I wanted a name for what ailed me. A cure. A way back to normal.

Tweet: I told him I wanted a doctor-patient partnership, not a dictatorship. http://bit.ly/itchy-journey via @EmpowHER

And he gave it to me. Two months after our initial sit-down, I endured my third chemical patch test. But this test was different. I was being tested with the Mayo Standard Series, the Mayo Cosmetic/Botanical/Fragrance Series, and the Mayo Hairdresser Series. I had 168 patches on my back—nearly five times the number of potential allergens as either of my previous tests. And, at my request he tested for autoimmune progesterone dermatitis. It was negative.

In the end, we discovered that I was allergic to 20 separate chemicals which have an astounding 1,896 mandatory cross-reactors (siblings) and 1,289 optional cross-reactors (cousins).

christina boland today
Me today.

After ten long, miserable, itchy, sleeping-with-icepack years, my tenacity led me to the correct diagnosis. The best part? Dr. Yiannias had previously developed a plug-and-play list of everyday products designed to eliminate product guesswork for people like me. That database is called SkinSAFE, and it is where I find products designed just for me.

Now I am the me that I used to be: Itch Free.

Read more in Your Ultimate Guide to Beautiful Skin

Baseline series of patch test allergens. Dr. Amanda Oakley, Waikato Hospital, Hamilton New Zealand. DermNet NZ. Retrieved 18 September 2015.
http://www.dermnetnz.org/dermatitis/standard-patch.html.

Contact Dermatitis. Third Edition. 1986. Fisher, Alexander A. 

Investigating the Causes of Chronic Itch: New Advances Could Bring Relief. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIH). Retrieved 20 September 2015.
http://www.niams.nih.gov/News_and_Events/Spotlight_on_Research/2014/chronic_itch.asp.

Personal email communication. Yiannias, James A. Retrieved 15 September 2015.

SkinSAFE. http://www.skinsafeproducts.com/.

Your Ultimate Guide to Beautiful Skin

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Do Anti-aging Products Really Work? The Science Behind Them

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Why Are Some Women More Prone to Acne?

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10 Skin Care Ingredients Banned in Other Places, But Not in the US

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All in Your Ultimate Guide to Beautiful Skin

Add a Comment24 Comments

EmpowHER Guest
Anonymous

Shortly after giving birth I had 8 months of severe allergic symptoms very similar to what you have detailed. I visited 7 doctors, and had 6 rounds of allergy testing. In April I was diagnosed with allergies to 27 different contact allergens. It has definitely been an adjustment. I continue to flare up from products that are supposed to be safe, but it has gotten considerably better than prior to my diagnosis. I can't imagine dealing with that for 10 years. Thank you for sharing your story! It helps to hear there are others out there. I am going to ask about getting tested for the progesterone dermatitis. I have another autoimmune condition, and the dermatitis was most severe while I was breastfeeding (we breastfed to a year.) Have your symptoms gone away completely? Do you still run into allergens? Thanks!

August 3, 2017 - 7:50pm
EmpowHER Guest
Anonymous

After working as an OR nurse for many years I developed a latex allergy which forced me to change my career. I have since developed allergies to perfumes, hypo allergenic medical tape, hair dye and bio oil. Boy I can relate to the ice pack story. When the itch is really really bad nothing will help apart from ice packs. The hair dye and bio oil reaction has occurred in the last month. I'm seriously considering shaving my head because my scalp is so irritated despite a course of steroids. Even my ears are weeping and blistered. Its reassuring it know that I'm not alone. I didn't think about transfer issues. I probably should see my specialist again to come up with a plan to sort out my current issues. Thank you for sharing your story.

July 18, 2017 - 1:27am
EmpowHER Guest
Anonymous

I too had the unbearable burning itch, and slept with ice packs on my neck and body... Still haven't been diagnosed but I know this is what I have. What can I do to not be so itchy and lessen the burning all over especially my face?

March 22, 2017 - 2:13pm
EmpowHER Guest
Anonymous

I have very sensitive allergic skin and the Made from Earth Pure Aloe Treatment is in my opinion excellent it is not greasy and soothes the skin initially taking away the itch, a little goes a long way and worth paying a bit extra for a cream that works. This is also steroid free so you can use on the face and on a daily basis.

January 31, 2017 - 2:28pm
EmpowHER Guest
Anonymous

Great story, and I am glad you are now free from your torment. However, you did not say how Mayo treated you after the diagnosis. What did they give you to stop your misery prior to you changing your health and beauty products. This is a key part of your story and I would like to know. Thank you.

January 30, 2017 - 5:41am
EmpowHER Guest
Anonymous

I was so sick of itchy skin that I would try anything but I now use the Aloe & Jojoba Therapy from Made From Earth. It has calmed my itchy skin it has a nice smell not over powering.

November 5, 2016 - 10:41pm
EmpowHER Guest
Anonymous

I finally ended up at Mayo Clinic in Jacksonville Fl. Dr Hall patch tested me for 120 different things, like formaldyhide. I am allergic to 7 diff things. The itching has stopped. thanks to Skin Safe web site I only purchase what they filter for me. Finally relief. I too slept with ice packs. I was sleeping my life away because I had to take so much benydril for the itching. Oh, and the blisters. ugh. So bless you Dr. Hall and thank you to the dermotologist that sent me to mayo, Dr. Cappolla of Parks Dermotology in Port Orange Fl. & Skin Safe. You all have literally saved my life.

August 26, 2016 - 4:48am
EmpowHER Guest
Anonymous

Thank you so much for this honest story. It is hard to explain to people what I have been through. And I still get weird looks when I try to explain why I can't use the lotion, soap, etc in public places or even friends' homes.
This brought me to tears. It has to be easier than this! I don't want another person to have to go through this kind of journey.

August 1, 2016 - 5:29pm
EmpowHER Guest
Anonymous

I notice you are actually wearing makeup in the AFTER photo......I know everyone's allergies are different but I was wondering HOW you were able to find makeup that addresses all your allergies. I have allergies to nickel and cobalt and no USA company is offering nickel tested makeup, despite the fact that over 15 million Americans have at least a contact allergy to nickel. Mine is systemic, so it is more than "just a rash" although a facial rash alone is painful and horrible enough! I am going for more extensive patch testing soon and one of my goals is to be one day be able to wear makeup again and find QUALITY products that I can use for shampoo, antiperspirant, etc The ones listed as "safe" for the top 10 allergies often do not perform well for me.

July 31, 2016 - 5:45pm
EmpowHER Guest
Anonymous

Been on this same road to hell for over 6 years.
"The next specialist was a misogynistic, crotchety creature who scoffed at my Itchy File, my symptoms" OMG I think I am seeing this same specialist now. :(
I had a friend recently give me the advice that we should "stop looking for a cure and be satisfied with whatever small enjoyment we can obtain from life" NOPE sorry I am not going to settle for my current very poor quality of life. Doctors don't realize how PAINFUL and life altering these conditions can be. Look at her face, the first compared to now. The amt of swelling in the first may not look bad to the casual observer because she is thin BUT I know from experience that look....and the pain that goes with it. I went years without a good night's sleep due to pain and discomfort. This saga proves that there IS hope, and yes a small number of patients with money, good insurance, luck and persistence DO actually sometimes get answers and get better!!!

July 31, 2016 - 5:26pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.