TOUCHED BY LYME: Songwriter no longer “Paralyzed” by Lyme
When Marina Morgan was 13 years old, she developed an auto immune disease called acute disseminated encephalomyelitis (ADEM). According to the National Institutes of Health, ADEM is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers.
The condition put Marina in a wheelchair, and she spent months in a children’s hospital, relearning how to walk and use her arms. Once past that episode, however, all seemed well for the next 10 years. She even became a runner—healthy, energetic and full of life.
Then, last year, at age 23, a new constellation of weird symptoms descended on her body. Esophageal spasms made it almost impossible for her to swallow food and keep it swallowed. Muscle weakness in her legs and arms made it difficult to walk and maintain her balance. She lost the vision in one eye.
Her doctors didn’t think it was a return of ADEM, but they didn’t know what was causing this cascade of troubles. Many specialists tested her for many things. Nothing.
“For a while, I thought I might be going crazy,” Marina recalls. “People would make me feel like I was over reacting and making it more than it really was. But I knew there was something seriously wrong.”
After almost a year of no answers, somebody finally decided to evaluate Marina for Lyme disease. Bingo. She started treatment last May. After three months of IV antibiotics, Marina says, the vision in her right eye has returned. However, due to lingering problems with depth perception, she still can’t drive a car.
Other issues are improving as well, though Marina says progress is slow.
She has written a song based on her experiences and posted it on YouTube. It’s called “Paralyzed.”
“I hope this song sends the message that no matter what kind of obstacle you are facing in your life whether it is illness or personal crisis, just know that you are strong enough to beat it. You don’t have to be paralyzed, ” she says.
“I hope this song will inspire people who suffer with this disease to fight and see that there is a light at the end of the tunnel.”
“Paralyzed” is also available on iTunes, Amazon, and Spotify.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com.
- October 31, 2016 at 1:06 pm
Hey, I think you have a coinfection called babesia. I’m not a health practitioner, just another lyme/babesia/bartonella patient. I’m writing to thank you for writing this song- it’s great- and to tell you the two things that have made the most difference for me: seeing a naturopathic doctor and being on a mepron 3 days off-4 days on + zithromax MWF combo of antibiotics. Plus sacromyces bouladii and other probiotics.
Way to keep fighting! I finally have a glimmer of hope after 2 years of treatment.
All my best ♡
- November 2, 2016 at 7:14 pm
I had about 7 years of treatment from 2002 to approximately 2009. When my treatment was jerked, my health went downhill very fast. You need to be able to afford treatment all your life. I lost my job and ability to pay, so I continue to get worse. Without the treatment I had, I probably would be dead or in a wheelchair. Treatment is better now, not because of all the researchers who keep their work to themselves, but because the doctors who do treat are learning. I do not hold any confidence in researchers or the criminal medical establishment. The ABX IV, or other ABX is now pulsed, and that seems to work much better. Wish my doctors had realized this.
- April 14, 2017 at 11:31 pm
Use herbs instead of abx. More potent and cheaper.
- November 2, 2016 at 6:13 pm
- November 9, 2016 at 9:36 am
Her voice and this song is amazing! I’ve had Lyme for 4.5 years and could so relate to the lyrics and tone of the video. Thanks Marina!
- November 30, 2016 at 1:54 pm
Thanks Marina for your story. I have a similar one. In 2000 I had a severe pulse aching headache, similar to when I had Shingles, but no head rash, I became very fatigued, the left side of my face drooped with Bell’s Pulsey, and I lost the lower half of my vision in both eyes through optic nerve damage. Doctors could not diagnose the problem. Then, in 2010, after completing 6 months of chemotherapy for leukemia in a clinical trial, I became bedridden with what was thought to be Hydrorcephalus, excess in fluid on the brain, A neurosurgeon determined it was not Hydrocephalus and thought it was Jacob’s dementia and told my wife he estimated I had 4 or 5 months to live. In the meantime, he ran more tests, and checked for Lyme. It came back positive. I was diagnosed with Lyme Menengo encephalitis. I was given 2 weeks of antibiotic, ceftriaxone, via IV and PICC, and recovered, and had to learn to talk and walk again by speech and physical therapist. Sometimes we get a lucky prognosis but I sometimes wonder how many do not get lucky and end up in nursing homes without treatment.
- January 23, 2017 at 8:14 am
What physician treated her?
- October 11, 2017 at 8:34 am
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