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At 1 month old, I developed eczema on a large portion of my body as a result of prescription antibiotics and allergy laden genes. The remedy? A prescription of topical steroid cream (aka cortisone) to be applied to all affected areas continuously until eczema disappeared.
Around age 2, still coping with eczema, I began to experience severe environmental and food allergies. One of the remedies that I received was steroid shots to calm the inflammation. I was quite young to be receiving such aggressive treatment, but it was the allopathic method of the 70′s I guess.
The eczema never totally disappeared. Although I grew out of the majority of the eczema sometime between age 8 and 10, I still sustained tiny patches. I continued applying a generic over-the-counter version of cortisone cream to the effected areas through out my youth as recommended by our family physician.
In my late teens I developed acne. The remedy? My dermatologist would inject my blemishes with corticosteroids (in addition to non-steroid topical medicine). So I was enduring steroid injections while still using topical steroids.
Interestingly, during my teen years, I developed a lot of other random health problems like hair loss, mood changes, insomnia, brain fog, memory loss, digestive and bowel disorders, menstrual irregularities, cysts, extreme fatigue, dry goopy eyes and joint pain. These would alternate coming and going. I had many different blood tests and allopathic evaluations but was never diagnosed with anything to explain these symptoms. I was young and didn’t think too much of it, I wasn’t really a complainer.
A dose of Accutane cleared my acne when I was 20. This eliminated the need for facial steroid injections. Around this time I completely changed my diet to include a high quantity of vegetables and fruit and very small amounts of everything else. In addition, I began a rigorous exercise routine. I feel that this contributed to diminishing my eczema to almost nil.
During most of my twenties I don’t remember applying topical steroids very much. I think I just scratched a little bit here and there and applied regular lotions for the most part.
When I was 24, after a trip to South America, I was hospitalized for severe stomach problems. Despite testing for parasites and other pathogens, they were unable to make a clear diagnosis. So to be on the safe side I was prescribed 2 broad spectrum antibiotics (Cipro and Doxycyclin) that focused on eradicating susceptible organisms, particularly anaerobic bacteria and protozoa like parasites and amoebas. This is interesting to note because I was later prescribed similar antibiotic/anaerobic medication for Lyme Disease.
By this point I was frustrated with the allopathic medical community and would only seek their assistance for acute care. This led me to try all sorts of alternative therapies like acupuncture, shiatsu, foot reflexology, herbal detoxing, muscle testing, massage and chiropractic care. These things were much more effective in helping me to endure some problems and eliminate others. I was pretty healthy and energetic by the time I was about 26.
Here is where it all begins to unravel.
When I was 28, I woke up one morning with eyes swollen shut, not the usual eczema patches. But because my eyelids had eczema on them, I sought out a dermatologist. The remedy? A steroid injection and topical steroid prescription. Interesting to note a common symptom of Lyme disease is swollen eyes, autoimmune symptoms such as arthritis, etc. The physicians never considered the swollen eye lids to be anything other than eczema and treated me for allergies and my history of eczema. After finally being diagnosed with chronic Lyme Disease, I realized this initial swelling of the eyes treated by topical and injected steroids was what led to the complexity of my illness.
As stated on the Lyme Disease Research Database (http://www.lyme-disease-research-database.com/chronic-lyme-disease.html) “…Misdiagnoses can contribute to chronic Lyme disease when doctors subscribe medications for diseases or conditions they believe their patients have, but in fact they do not. This can have disastrous results. For example, THE USE OF CORTICO-STEROIDS WILL REPLICATE THE SPIROCHETAL BACTERIA THAT CAUSE LYME DISEASE. Therefore, steroids are to be avoided where Lyme disease is suspected, and they are contraindicated. Some Lyme-literate doctors believe that steroid use while Lyme bacteria are present will cause chronic Lyme disease. But, ignorant of the possibility of the presence of the Borrelia burgdorferi bacteria, medical doctors have mistakenly prescribed steroids to control inflammation, with calamitous results for their patients.”
Over the next 4 years it seemed that no matter what I did, I couldn’t contain the eczema. In fact, within a short period of time the eczema increased to cover larger areas of my face, neck, arms, chest, abdomen and legs. In addition to the eczema, I spiraled into a series of weird problems like temporary facial and arm paralysis, female hormone problems, strange head pain localized to one area, sleeping problems, pruritis, allergy type reactions that triggered eczema and emotional stress. Although I increased my holistic approach to heal, I never discontinued using topical steroids and received yearly steroid injection over the course of 5 years – as it seemed to be the only thing that would bring me immediate relief from the “eczema”. In the beginning the steroid injections would eliminate all of the eczema and I would stay clear for 6-9 months. By the time I was 32 I was about 75% covered in eczema and it would no longer respond as completely to steroid injections. Interestingly the 4th and final steroid injection I received only lasted less than a week and my eczema came back raging worse then before.
It was at this time that the dermatology group I was seeing became worried that maybe I was experiencing a reaction to the steroid injections. My skin had become severely red, painful, thin, tight, difficult to move and burned. My skin had become so thin it would break open and bleed when I bent my joints. They prescribed Hydroxyzine and Doxepin to deal with the intense itching. I went through a gamut of antihistamines which only made me jittery, except for Zyrtec which I would take. Finally I was referred to one of their dermatologist who specialized in patch testing and bizarre skin issues.
“Yay!”, I thought. Someone who realized my intense suffering and would get to the root of the problem.
Over the next year, this dermatologist photographed, dictated, biopsied, patch tested, blood tested, referred me to allergists, gave me numerous topical immuno-supressants, topical steroids and other medications to try. She also collaborated with a physician in another medical university who specialized in rare skin disorders to try and figure out what was going on. I became an actual case study. In fact she told me she would be using pictures of my skin during conferences she would be lecturing at in several European cities.
It was recommended to do “soak and smears” and I received 50/50 compounds of a hypo-allergenic lotion and steroid mixture. I was to soak in baths with bleach and then smear the compound all over me after I got out of the tub. I also eliminated certain household cleaners, detergents and clothing dyes from my life. I actually had to get rid of 75% of my wardrobe due to being allergic to disperse blue dye which is found in black and blue clothing dye. Being from the NY metropolitan area, I wore a lot of black. It was a life altering experience to make such a drastic change to dress in color. (One of the best things that came out of my search for better skin.) Although she helped me find some relief, the “eczema” was never eliminated.
She was the kindest physician and most knowledgeable dermatologist I had encountered in all my years of seeking allopathic assistance. But it didn’t change the fact that after an intense year of testing, these physicians were unable to come up with any other explanation for my red burning and itching skin other than “eczema”.
Three more increasingly difficult years of search and suffering lapse. I quit my corporate profession and went to school for skin care, ultimately becoming an esthetician, so I could understand more about my body and skin health. I also took classes about the Lymphatic system and became certified to provide manual lymphatic drainage massage by the Dr. Vodder school.
My skin health continued to deteriorate. I sustained 9 staph infections on 30% of my body over an 18 month period and took 6 courses of antibiotics. I decided to become a vegetarian, completed intense detoxes, received manual lymphatic drainage and even water fasted. All the while, I never stopped using topical steroids of increasing dosages. And in 2010 I quit my Esthetician job and stopped working for a while. I began taking a nutrition program to educate myself and have a better medical understanding and became a certified Nutrition Consultant.
Due to my rigorous holistic lifestyle, by 2011 I was experiencing much better quality of health, I even ran Bay-to-Breakers marathon in San Francisco (my first ever marathon type experience). I finally felt like I was at my peak health and experienced very little health problems. I was thrilled when finally I had gone through an entire year without a single staph infection. But STILL the eczema would not go away completely.
That all changed. By the end of the summer I was diagnosed with fibroids, my knees started swelling and I got a staph infection after 1 year free. One morning in October 2011, I woke up eyes swollen shut and weird allergic reactions on my neck totally swollen and red. (I think it was an allergic reaction to Asian food I ate.) Then later that month I started losing my hair like crazy and had some type of eczema/dandruff in my scalp. I was at my wits end! I felt like totally giving up.
So I took the advice of a friend to seek the consultation of an integrative medical group about an hour away who specialized in autoimmune disorders and other random illnesses. I was so skeptical and didn’t think they would be able to figure anything out. But I went. They had me fill out a 30 page health history form. This was the first time I was ever in an allopathic type medical office that took an intensely thorough intake form. They wanted to know about every part of my body during every year of my life and the health of the lives of all my family members from grandparent to aunts and uncles to parents and sibling. I was intrigued.
Between October 2011 and April 2012, I underwent many blood tests and was ultimately diagnosed with Adrenal insufficiency, Thyroid dysfunction, Coagulation dysfunction and chronic Lyme disease. It was like a beam of light parted the clouds and shined down on me as the heavenly choir filled the universe with song. However, upon receiving treatment for the Thyroid I had crazy reactions to the medication and had to be weaned off right away. Something was not quite right.
My entire life, my mom has been my biggest health advocate. She has been my personal research analyst and R&D team. She has been researching, studying, documenting, discussing my health history with any knowledgeable person in the world of eczema who would listen and filing everything she could find with regard to eczema since I was a newborn baby. It was not uncommon for me to receive magazine articles in the mail, get plastered with some random skincare recipe she had concocted, have emails from her with links to all kinds of resources and discuss at pain staking lengths on the phone what I should dabble in and try to do to recuperate from my plague of eczema (and other health issues).
Back to the story.
Accidentally one day, my mother stumbled on to a blog of someone who had been able to overcome her eczema without a single recurrence over more than 10 years to date. This woman also had links to other bloggers who did the same thing. This eventually led my mother to find a website that had been published, just 1 month prior, established by a non-profit organization describing all of the epidermal symptoms I had been experiencing for the last 36 years. Except this time the diagnosis was not eczema. This anomaly has been dubbed officially as Red Skin Syndrome which is a really nice way of saying “Topical Steroid Addiction”.
I will never forget my mothers voice on the phone when she called to tell me I had “Topical Steroid Addiction”. Usually the conversations would be light-hearted and uncertain, in her nasally Canadian inflections and heavy New Jersey accent she would say things like “aw Heath maybe you could try this. Who knows it might work…”. But not this phone call. Her voice was stoically deep and hesitant. As she spoke I could tell she was overwhelmed and ridden with grief but unburdened all at the same time. I knew from her voice that this was it and the search was over. “…Heather…” she paused, “your addicted to topical steroids.”
I didn’t even wait to see the Dr. Marvin Rapaport of Beverly Hills, CA, who so kindly is helping to transform the health and wellness of more than 1500 patients world wide over the last 12 years with so profound a diagnosis. (He is 1 of only a handful of physicians in the world who diagnoses and treats this problem.) It was so clear from the description on http://www.itsan.org that I had Red Skin Syndrome – I discontinued using steroids on May 8th, 2012. Thank goodness I had already been ordered to bed rest by the physician treating me for Lyme Disease. I traveled to Dr. Rapaport’s office to receive my official diagnosis of Red Skin Syndrome due to topical steroid addiction. By June I was having horrific flares that made it impossible for me to get out of bed or have any semblance of cognitive function.
And THIS, my friends, is where I begin my journal entries.
Today is Day 149 topical steroid free!
And booooooy, has it been grueling.
Let’s just say that I hope the worst is over. My brain finally has enough cognitive function that I can now document my personal withdrawals description and other experiences with you, who like me, wishes to be Eczema Emancipated.
Best wishes to all of you coping with the same thing. I hope some of this information will help you, as many other individuals’ blogs have been helping me.