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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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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 Comment32 Comments

EmpowHER Guest
Anonymous

I am curious what your final diagnosis was. My husband deals with unresolved itchy skin in his ears and ringing ears. Can't seem to get it figured out.

June 12, 2016 - 4:24pm
EmpowHER Guest
Anonymous

What a story!! God Bless you and your ability to hold onto any bit of sanity! And you are consistently better now? Whatever I have been experiencing for the last few years seems to be worse with each new major 'session' and altho it has been constantly active since the first outbreak that presented with 5 completely unique rashes (the itch and pain was not unique!) no one I sought help from named anything or provided any comfort. I take that back - the Prednisone did help dry up and partially clear up the oozing, blackened skin (not a lot of skin there, I guess) or rash on my shins and I was very grateful not to have to look at or touch that any more...

With my last 'flare-up' I decided I was not going to seek any more medical advice ( blood tests, biopsies, wasted time and money on useless creams and torturous experiments) and altho this time my entire body was involved with a rash, the pain, the itching, sunken, dark circled eyes, loss of energy AND as a bonus - loss of most of my hair!!! I have gone this round alone and do not feel that much worse for the wear. Last time the 'bad spell' with all the ridiculous help, lasted something over 18 months. This time, even with all of the unexpected new problems - I forgot to mention the edema and my lack of knowledge about what was happening with that - it has been 9 months and things are not too bad. The palms of my hands and soles of my feet have a thickening of skin (sound like psoriasis?) and the red, lumpy, skin shedding rash from ankles to mid-calves/shins is constant, but not intolerable...

Enough about me! I am very happy with your end result. Congratulations! Your last picture is a great change from your first picture!

BelindaV

June 5, 2016 - 9:51am

This is staggering, and so is ur resolve. I know how crucial it is to persevere, especially when u r an intelligent person, and while u know ur body best, like I did in my crucifying menopause. Besides, I know how abhorrent it is to hear a careless doctor's comment scoffing at ur opinion. Glad u made it here after that odyssey!
From a medical view point, though, I being a physician, I have few comments. First, the fact that it was a contact chemical allergy causing ur symotoms, I am surprised it was resistant to local, and even systemic steroids, and my question here is we didn't know exactly whether u fully avoided it and recovered or was it anything else. My second point is, ANA is a very significant indication of possible autoimmunity when the background symptoms are suggestive, and other immune studies should be done, but ur symptoms should have responded to steroids. Third, did the doctor do a progesterone injection to test for APD? Finally here, I could suggest for such recalcitrant lesions, that any steroid drug or antihistamine cream be withdrawn for an adequate period, of perhaps two weeks, while u could use oral antihistamines or local soothing agents-but no steroids, and a biopsy be taken for a definitive diagnosis,
Best of luck, and I would personally be interested in knowing your future evolution-

May 28, 2016 - 5:59am
EmpowHER Guest
Anonymous (reply to Maria Jasmine Freeman)

I just wanted to comment on a few comments you made, solely for the purpose of spreading information because I have been through a similar situation as this woman, and I, too, have problems with steroids. And I believe I can tell you WHY the steroids weren't working.

You mentioned: "I am surprised it was resistant to local, and even systemic steroids" and "ur symptoms should have responded to steroids" and "while u could use oral antihistamines or local soothing agents..."

Here is what the issue has been for myself and a few others I know who have allergic reactions to medication: our meds are more than their active ingredients in this day and age. And the majority of them contain a small list of very common INACTIVE ingredients that can make them a true horror for anyone who has chemical (or even food) allergies to one of those ingredients.

So when a person reacts to so many chemicals, it is nearly impossible to GET local steroids or systemic steroids or antihistamines or soothing agents that do not have some, or many, of the very chemicals that are causing them to react. This is as true of hypoallergenic meds as it is of anything else.

And if the reaction is bad enough to the chemical, the steroids are sometimes not enough to compensate for the increased allergic reaction to the added inactive ingredients in the steroid pill/solution itself.

I have had this specifically happen to me when I took steroids for an allergic reaction and they worked at first, but trying to taper off, I would hit a point where the steroids dropped below the level needed to deal with the reaction I was having to the inactive ingredients in the steroid itself and I would start reacting again.

Didn't make sense until we found out WHAT I was reacting to, and that it was in every vitamin supplement and medication that I was being given. I have to get my medication compounded now to avoid these reactions.

I don't mean this to take a slap at you, but I just wanted to say that as a person with this type of reaction, I can tell you that more doctors than not have had the same thoughts: steroids should work. And if they aren't working...it must be that the patient isn't taking them, is still getting the allergen, etc...

And yeah...the patient often IS still getting the allergens, only it is not necessarily due to a lack of care on their part. It can be due to exposure from the very meds that are supposed to help them. Assuming the patient IS doing what they are supposed to, and taking a step back to see what else might be introducing the allergen to their bodies, would really be a great help to those of us patients who have this type of issue.

June 4, 2016 - 7:32pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Have you also heard of topical steroid withdrawal syndrome/red skin syndrome?

August 1, 2016 - 7:15am
(reply to Anonymous)

Hi Anon,

You might find this article from the National Eczema Association to be helpful: https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/

It has some great information on topical steroid withdrawal/red skin syndrome.

Hope it helps!

Best,
Erin

September 21, 2016 - 3:11pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Incredibly insightful comment ypu have made here to the use of systemic or topical steroids and possible issues ( allergic reactions -even delayed reactions ) some may have with inert ingredients as potential unseen cause for ongoing reactions as steroid levels are reduced. Very thought provoking for those not succeeding with "tapering down " off of steroids .

July 31, 2016 - 9:57pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi anonymous. Thanks for responding to my comment. Just to point out in case others are confused, TSW/RSS is not actually an allergy to ingredients in the steroid creams, but a reaction to the steroid itself. God bless

August 2, 2016 - 10:09am
EmpowHER Guest
Anonymous

Terrible heartbreaking journey she went on and glad the author found a solution. I am having issues now and seems to be with histamine and staph causing bad rashes on the face now but that is an assumption only at this point from ruling out other issues. I would love to know what the authors actual final diagnosis was as I seemed to miss that in the article, rather than just finding what products do or do not affect her. Thank you

May 27, 2016 - 8:16pm
EmpowHER Guest
Anonymous

Wow what a journey. Thanks for sharing. Skinsafe sounds amazing. Will check it out.

May 25, 2016 - 10:02am
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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.