Seeking treatment for chronic illness: when desperation takes over

Allyson Byers was desperate to find a treatment that worked for her painful chronic skin condition.

I recently read an article by Self magazine about a young woman named Allyson Byers who suffers from a chronic skin condition called Hidradenitis Suppurativa (HS). According to the Hidradenitis Suppurativa Foundation, HS causes painful abscesses and boils to form in the folds of the skin, often around hair follicles, such as the underarms and groin. While the exact cause of HS in unknown, it is believed to be autoimmune in nature.

Although the condition isn’t actually rare, with about 1-4% of the general population affected, HS is often misdiagnosed as other conditions, like cystic acne. Patients also frequently don’t tell their physicians about their symptoms due to embarrassment, until they’ve reached stage 3 of the disease (at which point, surgery may be required).

Allyson was fortunate to have been diagnosed six months after the onset of the disease, as a result of a knowledgeable family physician who recognized the tell-tale symptoms. She then went on to see a dermatologist, who prescribed a variety of treatments, from antibiotics, to diabetes medication, hormone-suppressing drugs and even immunosuppressants. But nothing seemed to quell the prognosis of the disease, and eventually, Allyson found herself in so much pain, she couldn’t even raise her arms or even walk, due to the abscesses in her underarms and groin. It even affected her sleep.

Needless to say, she was desperate for a cure- or at least a treatment. Allyson said that in her desperation, she turned to alternative medicine to help. She tried everything from special diets, like the autoimmune protocol (AIP), to supplements and topical solutions (like turmeric, tea tree oil and special soaps). She even saw a chiropractor for a controversial diagnostic test called applied kinesiology, which involves exposing oneself to potential allergens and measuring changes in muscle strength. She spent thousands of dollars on unproven ‘treatments’ in her quest to reduce her painful symptoms.

I know all too well what it’s like to be Allyson—I have HS myself. Unlike her, however, it took six years for me to get a diagnosis (the doctors I had seen in Canada hadn’t even heard of the disease). Before I got diagnosed, I was so desperate for a cure that I purchased different creams, salves and ointments online, that had no medical proof, but that claimed to ‘cure’ my symptoms. One of the salves I bought caused a horrible burning sensation on my skin; another, an oil made out of emu fat (I’m not joking!), did absolutely nothing other than make my skin oily. Some of these so-called ‘treatments’ may have even made my condition worse.

Several members of my family, who are big proponents of alternative medicine, even brought me to a naturopath in the hopes of combating my Sjögren’s Syndrome symptons. I followed various different diets to no avail, took all types of unproven supplements, and even tried chelation therapy, which involves the intravenous administration of drugs to remove heavy metals from the body (this can even result in death). Although I am not against exploring alternative treatments and making lifestyle changes, none of these treatments improved my condition, and they cost even more than science-backed methods.

Like Allyson, I am tired of always trying to ‘chase’ a new treatment, scientific or not, in the hopes of finding a cure. Although I will never truly give up, I would urge others suffering from chronic illnesses not to get desperate; or at least to not allow your desperation to cloud your judgement. If you’re going to try an alternative therapy, at least run it by your physician first, so that you can ensure it’s safe before testing its effectiveness.

Have you had any success treating your condition with alternative medicine? Comment below!

Related blog posts:

My favorite Autoimmune Disease YouTubers

Zach uses his platform on YouTube to share his story about ankylosing spondylitis

Zach from The Try Guys

Zach is best known for his work as a videographer for media giant BuzzFeed. During his time at Buzzfeed, Zach created a video about his struggle with an autoimmune disease called ankylosing spondylitis which received over 5 million views. In addition to having difficulty getting a diagnosis for his condition, Zach continued to struggle due to incessant back pain even after being diagnosed. He stresses the importance of being proactive with your treatment plan, no matter the severity of your symptoms. Check out his video below!

Zach’s video: I have an Autoimmune Disease

Live | Hope | Lupus

Samantha has been creating advocacy videos on chronic illness for the past 10 years. She created the YouTube channel Live Hope Lupus to create a space where those with chronic illnesses could get information and support. Samantha herself lives with the autoimmune conditions lupus, Sjogren’s Syndrome and autoimmune hemolytic anemia, as well as other related conditions, such as TMJ, costochondritis and Raynaud’s Phenomenon. She encourages others to subscribe to her channel to follow along with her journey. Check out her video below!

Samantha’s video: Lupus 101

Adamimmune

Adam started his YouTube channel two years ago after being inspired to share his story of healing. He has an autoimmune condition called Hidradenitis Suppurativa (HS), which affects hair follicles in the skin. After reaching stage 3 of the disease and experiencing significant pain, Adam implemented the Autoimmune Protocol (AIP) diet and found that his HS symptoms went into remission after three months. He is a big advocate for lifestyle changes in the treatment of autoimmune disease and shares his AIP recipes and grocery hauls on his channel. Check out his video below!

Adam’s video: Hidradenitis Suppurativa: Life Before Remission (My HS Story)

Surviving as Mom

Meredith, who goes by Meri, vlogs about her experience with an autoimmune disease called Sjogren’s Syndrome, which she says makes each day a little more challenging. She is an active stay at home mom with four sons, one of whom has various special needs. Meri’s channel contains many videos about her life as a stay at home mother, in addition to a Sjogren’s Syndrome video series. Check out her video below!

Meri’s video: Day in the Life with Sjogren’s Syndrome

Kalie Mae

Kalie recently started her YouTube channel in the hopes of being able to connect with other chronic illness sufferers. She discusses various autoimmune diseases and related conditions on her channel, including Fibromyalgia, Chronic Fatigue Syndrome, Sjogren’s Syndrome, Ehler’s Danlos Syndrome, Chron’s Disease and more. She is very candid in talking about chronic illness, including discussing the impact of her conditions on her mental health, career and relationships. Check out her video below!

Kalie’s video: Anxiety and Depression Chronic Illness Awareness

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Is there a link between diet and autoimmune disease?

About 8 years ago, I saw a powerful TedTalk by Dr. Terry Wahls, called Minding Your Mitochondria.

Dr. Wahls is a physician who was diagnosed with Multiple Sclerosis, a degenerative autoimmune disease affecting the body’s nervous system. After undergoing traditional therapies for the condition, including chemotherapy and usage of a tilt-recline wheelchair, Dr. Wahls studied biochemistry and learned about the nutrients that played a role in maintaining brain health.

After noticing a slow down in the progression of her disease after taking nutritional supplements, she decided to focus her diet on consuming foods that contained these brain-protecting nutrients. Only a year after beginning her new diet, Dr. Wahls was not only out of her wheelchair, but she had just finished her first 18-mile bike tour! She went on to develop a dietary regimen for those with autoimmune conditions, called the Wahls Protocol.

So, this raises the question, does diet play a role in the development of (and fight against) autoimmune disease?

There is evidence to suggest that there is a link between autoimmunity and one’s diet. For example, I recently wrote about a study published by NYU’s School of Medicine, in which researchers found that the autoimmune disease lupus is strongly linked to imbalances in the gut’s microbiome.

Furthermore, the Multiple Sclerosis (MS) Society of Canada also released a report detailing Vitamin D recommendations for MS patients, as a result of studies linking Vitamin D deficiency to the disease. Vitamin D is produced by our skin through sun exposure, but also comes from food sources such as fish, dairy and eggs.

Tara Grant, who has a condition called Hidradenitis Suppurativa (HS), an autoimmune condition of the skin, believes that there is a direct link between autoimmunity and diet, as a result of a concept called leaky gut syndrome.

Leaky gut syndrome, also known as intestinal permeability, occurs when the tight junctions between cells in the body’s digestive tract begin to loosen. This enables substances like bacteria, toxins and undigested food particles to enter your bloodstream. Consequently, your immune system reacts to attack these foreign substances, which leads to the development of inflammation and autoimmune disease.

After implementing a restrictive, dairy-free, gluten-free paleo diet, Tara has found that her HS symptoms have completely gone into remission. She now promotes the paleo lifestle on her blog, PrimalGirl, and even released a book, The Hidden Plague, which talks about her struggle treating HS through traditional means, and her journey to healing.

Now I’d like to hear from you Autoimmune Warriors- has changing your diet impacted your chronic health condition in any way? What changes have you implemented that have worked?

Learn More

To read more about the Wahls Protocol, check out Dr. Wahls’ website, and click here to get her book on Amazon.

To read more about Tara Grant’s journey to being HS-free, click here to get her book on Amazon, and check out her amazing gluten-free dough recipe, here.