Under Our Skin came out in 2009, and aside from small victories, things are very similar in Lyme disease diagnosis and treatment. I'll give you an example from my personal experience. I was in the hospital for a flare up of my chronic co-infection of brucella, which is recognized by conventional doctors, as opposed to chronic Lyme. Now, during this short hospital stay I was seen by an infectious disease doctor who said to me, "Lyme is cured in 28 days, so you don't have that anymore." I was at the top hospital in Illinois and this person is supposed to be an expert in infections yet she had no understanding of one of the most common and fastest growing infections in the country.
It's astounding to me that with so many people are speaking up, including well-known celebrities, no one hears us. This film is a voice for the silent sufferers of Lyme disease.
The film follows a few specific cases of Lyme. The one that stood out to me was a young, vibrant woman, who had severe Bell's palsy and frequent seizures. She was referred to a psychiatrist and told it was all in her head. I don't know how anyone could fake Bell's palsy and seizures. Her desperation was heartbreaking.
There were some moments in the film that I could relate to:
One featured patient travels with U2 on tour. At one point she said, "The hardest thing is everybody thinks I'm normal." On the outside she looked perfectly healthy, but she was walking around in constant pain. I can relate. I look very healthy, no one would ever know I was sick and people who know I'm sick often forget that I have certain limitations.
Another patient recalls a time when a doctor said, "You don't have Lyme Disease." Hearing this struck a nerve with me, because one year before my diagnosis, through Igenex testing and the iSpot test, a doctor said these exact words to me and refused to conduct a simple blood test. I don't know if a conventional ELISA or Western blot would've been positive, but I know in my time as a "undiagnosed" patient I had never been refused any other tests. It makes me wonder why the doctor was so adamant that I didn't have Lyme.
The movie left a bitter taste in my mouth. I've said many times that all I wanted was a diagnosis, not a controversy. But on the other hand the Lyme community is so incredibly supportive. I know we will stick together and find a way to be heard.
There is one point in the movie when a doctor says, "We're going to learn more about chronic illness." This is one way to look at the controversy in a positive light. I think as we solve the mystery of Lyme disease and other chronic infections there will be a breakthrough in conditions previously thought of as incurable, such as certain autoimmune diseases and Alzheimer's disease. In my opinion many of these conditions are caused by chronic bacterial or viral infections and can be treated through antibiotics or, preferably, another safer treatment we have yet to discover.
The movie runs 144 minutes and you can stream it on hulu for free with occasional ads or stream it on Amazon if you have a Prime membership. You can also buy the director's cut on Amazon here:
This is a must see for any Lyme patient and the people who love us.
"You can damage the brain, you can damage the body, but the center of...the person you meet...she was whole." - Karen Cavanagh from OWN's Belief
On May 30th, 2014 my life changed forever. In the shower I noticed one of my ankles was swollen. Fearing a blood clot I went to urgent care. The doctor sent me to the emergency room. After a negative ultrasound and x-ray I was sent home. I wasn't satisfied with the diagnosis of unexplained lymphedema. That day I became a health detective. I vowed never to quit until I found the answer.
Months passed, and what felt like hundreds of doctors appointments, and I still had no diagnosis. The pain continued to increase culminating in a 5 day hospital stay in December of 2014 that rendered no answers. Through reading hundreds of threads on the internet, while searching for answers, I learned I was not alone. It seemed many of us had exhausted all of our options—but still needed help.
I was at a crossroads. It was time to look at things in a new way. I surrounded myself with exceptional practitioners and read as many books as I could get my hands on. Looking back I see that every blood test, biopsy, and MRI was another clue that led to my eventual diagnosis of Lyme disease.
I wonder if the infectious disease doctor would've done a simple Western Blot test when I asked her to almost a year before my eventual diagnosis, would I have grown as a person? With any difficulty it ends up being our greatest teacher.
From this experience I've learned...
...mindfulness is the most essential tool in healing.
...no one is as invested in my health as I am.
...I am my own best advocate.
...illness is a catalyst for transformation.
What have you learned on your healing journey?
"Wholehearted living is not a one time choice. It is process. In fact, I believe it is the journey of a lifetime." - from The Gifts of Imperfection by Brene Brown
I'm Kerry and I am a licensed therapist, writer & speaker. This is a positive space focused on how to thrive in any situation and the transformative power of suffering.