My Autoimmune Experience

Constant blog posts, articles, Pinterest homeopathic recipe boards, and entire books are dedicated to living with an autoimmune disease (AD). These diseases have created a cult community to rival even Crossfit, but we somehow take even more supplements than our fitness-obsessed counterparts.

Yet, if you are like me and suffer from a considerably rare AD, seeing constant posts about how bone broth and essentials oils can cure my disorder is disheartening and frustrating. I’ve struggled for four years with treatment after treatment, both homeopathic and medical, with no end in sight. There seems to be a trend online of painting ADs and AD treatments with a broad brush, when in reality that is far from the truth.

25.3 million people in the US suffer from over 80 autoimmune conditions. What works for one person won’t work for the next. For this reason, I wanted to share my autoimmune experience, from diagnosis to treatment, in hopes of showcasing and bringing to light what one life with an AD looks like.

My Diagnosis

A quick diagnostic montage: I began noticing red bumps on my skin in March of 2014. After 2 weeks with no change or improvement, I went to the doctor. It took 2 months, 2 doctors, 2 labs and a skin biopsy to get an answer. I was given the diagnosis of Lymphomatoid Papulosis (LyP) in May of 2014.

LyP affects 1.2 to 1.9 people out of a million so, scientifically speaking, I get to tout that I am in fact 1 in a million. Describing my condition is complicated, and can sound dramatic, but bear with me. The easiest way to describe it is to imagine a three-tiered cake.

LyP blog imageThe base layer is comprised of an unknown inflammatory condition. The second tier is a direct reaction to the first tier, and it is a lymphatic response to the inflammation. My body creates an excess of white blood cells to help attack and heal whatever is causing inflammation in my body. Lastly, the third tier is a result of my excess white blood cells, with no real job to do, transforming into CD-30 positive T-cells, a cancer cell found in patients with lymphomas. These cancer cells gather on my skin, creating red, inflamed spots.

LyP was classified by the World Health Organization as a cutaneous T-cell lymphoma in 2004. It appears as a malignant form of cancer under a microscope but is histologically benign.

So it’s cancer, but not like cancer cancer…

My Treatments

LyP is a relatively new condition, discovered in 1968. Therefore, there isn’t much known about it. There is no known cause and no known cure. Like most ADs, it is about managing symptoms. Yet, with so little known about it, finding a treatment that works is unique for each person. Generally, people with LyP will be able to go into a remission and stop treatment altogether. I am going on four years with no remission in sight. Because of this, I have run the gamut of LyP treatments.

TREATMENTS.pngDuring my almost four years living with this condition, I have tried more treatments than I care to count. After medication such as minocycline and doxycycline failed to make an impact, I was prescribed methotrexate, an oral chemotherapy drug used for a variety of conditions such as cancer, psoriasis, and RA. Yet, my body appeared to become immune to the starting 10mg a week dosage. I tried coupling medication with tedious light therapy sessions three times a week with no results. I’ve tried steroid creams, even steroid shots with no effect. The only solution to be found was continually raising my medication. After three and a half years, I’ve maxed out my methotrexate at 20mg a week, the highest dosage used for someone with LyP.

Living with LyP is frustrating, in large part due to the treatments. Methotrexate causes mouth sores, headaches, and nausea, and can cause serious damage to your liver and kidneys. Due to its past use as an abortifacient drug, I would be unable to carry a fetus to term while taking the medication, or even for months afterward. Not to mention the irony that while methotrexate is used to treat cancer, there is a side effect of developing lymphoma. Because of these side effects, I am required to get blood work and a pregnancy test every three months. This, coupled with light therapy, is the most common treatment for LyP.

Light therapy is, in my opinion, the most tedious and useless LyP treatment. It requires driving to a doctor’s office three times a week, stripping naked in front of a new nurse everytime, lathering up with medical grade lotion, and being shoved in a box of blue light, wearing only green goggles and a paper drape over your face while being forced to make small talk about the weather. Oh, and the actual treatment only lasts between 30-120 seconds. If I were of less sound mind, I imagine it would feel as though I were being abducted by aliens.

Why I Choose to Share My Experience

Treating an AD isn’t just about finding gluten-free recipes or immune boosting teas, although these methods work for some AD sufferers. The majority of the time, those methods are merely icing on a cake already comprised of endless doctor’s visits, blood draws, new medication, biopsies, ultrasounds and so much more. I hope by sharing my experience I can connect with fellow AD suffers and hear their stories, as well as educate those who may not know much about them.

If you are a fellow AD sufferer, I’d love to hear your story in the comments! If you have any questions for me or about my specific condition, feel free to drop them below.
I'd love to hear from you!

 

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5 thoughts on “My Autoimmune Experience

  1. This was really helpful for me to understand your diagnosis better! And it totally sucks. Hang in there, AD sister. I’m going to take my supplements with some dandelion detox tea and go to bed now!

  2. Hi
    I just read you’re post it cheered me up! I’ve had lyp for 5 years and been on Methotraxte for 5 years with no sign of remission. It’s so hard to explain to people what it is your post explains it so well!

    • Thank you, Ivy! Even after four years, it is still so hard to find a way to describe this condition to people even within the medical community. I’m so glad you found this helpful 🙂

  3. I developed Lyp in 2000 although it took 8 years to get a diagnosis. Seven or eight (male) dermatologists shook their heads, told me to wait and see and come back if the lesions reappeared. They did, of course, hence the number of referrals by my GP. One even told me that a huge lesion on my face – they were almost exclusively on my face – looked like ‘a picked spot’. I finally saw a female consultant who recognised how distressing and frustrating the past eight years had been and ordered a biopsy which gave a diagnosis and an effective treatment plan. Methotrexate works for me. I still find it hard to forgive all those men who treated me like a vain woman concerned about a few spots. The early years were spent trying to cover up disfiguring lesions with makeup when I had to go out or else staying indoors. I now have a wonderful consultant but would urge anyone with suspicions about the cause of similar symptoms to persevere in finding a diagnosis and refuse to be fobbed off. Take photographs as well. As the lesions waxed and waned, there was sometimes nothing to show the doctors when I eventually got an appointment, apart from the scars. Thank you for your post. There is still so little information out there available to non-medics. I know little more about my condition today than I did 10 years ago.

    • Margaret,

      Thank you for the comment, I really appreciate it! It took me three doctors and multiple second opinions, and even then my current doctor doubted the diagnosis, requiring a total of 5 biopsies in under a year. I am lucky most of my lesions are on my arms, legs, and torso but have experience one or two on my face before. I am so glad you were able to find a doctor you connect with and a treatment that works for you!

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