Help Maryelizabeth and fight Lyme Disease
Though Maryelizabeth has struggled with chronic health problems most of her life, it was the end of 2016 when things took a sharp downward turn. What initially started with abnormal pains in her extremities rapidly progressed to the point she was unable to use her arms and, later, walk without assistance. After months of appointments with nearly two-dozen specialists, she was finally diagnosed with having Advanced Lyme Disease. This is a brutal disease that is often misdiagnosed. In Maryelizabeth’s case, she was diagnosed with having three different strains of the disease, likely caused by three different tick or bug bites going back more than 30 years. That’s right; since she was eight years old Maryelizabeth has been in and out of doctors’ offices fighting a disease that medical professionals continued to miss. But anyone who knows Maryelizabeth knows she’s a fighter. This inner drive built her a career in the music industry, where she was a celebrated radio DJ, artist manager, music industry professional, and mentor to many. She challenged bands and inspired colleagues to give their best, often in spite of adverse conditions.
I remember when Maryel was transitioning out of the music business and heading into the fitness industry. She had spent the previous two years focusing on her own physical health and lost an immense amount of weight. The two of us found each other while she was pursuing certification as a personal trainer and nutritional counselor. She was so excited about improving her own quality of life that the next logical step was for her to use that knowledge to help others. Because that’s how she is. The Maryelizabeth that is my best friend was purpose-driven, always laughing, and in great shape.
Unfortunately, one of the worst aspects of Lyme Disease is that it eats away from the inside first. She has lost the majority of her muscle mass, often making it difficult to do things as simple as hold dishes or even stand. Her eye sight is likely permanently damaged. The disease has attacked her brain, meaning her short and long-term memory suffers, as do her motor skills. And when she is in otherwise good condition, she gets exhausted after mere minutes of conversation. She is truly a ghost of herself.
Another terrible aspect of dealing with Lyme Disease is that most insurance companies won’t cover treatment for it. The doctors that specialize in treatment of Lyme, called Lyme Literate Doctors, generally don’t accept insurance either. It’s immoral and inexcusable that such a debilitating disease falls outside the scope of most insurance coverage. Maryelizabeth has been fortunate to be treated by one of the best Lyme Literate Doctors in the world. Her treatment began back in May 2017 where the true threat of this disease was revealed.
Maryelizabeth likely saved her own life by being in such previous good shape. It’s said that Lyme Disease is recoverable when caught in time; she was well past that time. To put it in perspective, at the first appointment which I was with her and the doctor, she told Maryelizabeth she was fortunate to have previously been in such great shape as, according to the blood tests, anyone else would be dead.
The doctor put Maryelizabeth on a crazy regimen of antibiotics and supplements, not to mention another bucket full of pills to counteract the symptoms that were wrecking her body from the inside out. The biggest concern at the time was sudden organ failure while her body struggled to save itself. As she was able to transition to more invasive antibiotics, the doctor had a PICC line inserted directly into Maryelizabeth’s heart. She had to sit for six-to-seven hours each day as an IV bag was administered every morning and every night for over four months. For months she and her family managed a schedule of home nurses, administering IV medication, and the occasional emergency room visit. That she was able to mentally get through this, much less the physical issues, is in itself a remarkable accomplishment.
The bulk of this treatment has not been covered by insurance. Last year alone the family has spent more than $20,000 in uncovered doctors and medicine. These costs are not going away anytime soon. I have created this GoFundMe to help lessen the financial burden on Maryelizabeth and her family. In addition to ongoing medical costs for the Lyme directly, Maryelizabeth has suffered an enormous physical toll. One aspect of that is she suffers from a neurological disease in her face brought on the disease that is similar to bell’s palsy, but unlike Bell’s Paulsy, it has caused the muscles in her cheek bones to detach from her face causing immense pain. Her eyelids have also lost all muscle control and need to be replaced with the skin surrounding the eye that still has muscle function. According to five different doctors, there is no alternative other than corrective surgery. This is a hugely uncomfortable situation for her to suffer through. As insurance companies are also deeming corrective surgery a non-essential elective she is forced to pay for this reconstructive procedure out of pocket. A trustworthy reconstructive surgeon is willing to perform this surgery for around $10,000. We are hoping to raise enough money to help cover this facial surgery in addition to the next few months of Lyme treatment costs.
If you’ve read this far then it’s clear Maryelizabeth means as much to you as she does to me. My best friend and business partner has been sick for 30 years and, for more than a year, has been completely broken. Thank you in advance for any help you might give. Please pass this along or share it on any social media pages you may have.
These past few weeks we can not thank everyone enough for your support and willingness to share Maryelizabeths GoFundMe page. Because of you The Daily Voice Bergen County heard about Maryelizabeths story and wrote a wonderful piece expanding the reach even further than we imagined. Thank you Daily Voice !
Click here to read the Daily Voice article.
The support and kindness hasn’t stopped there. If it weren’t for the article a fellow community member and small business owner, Jessica Moldonado from, FFC Mortgage in Rutherford, wouldn’t have known about Maryelizabeth from, the Underground Trainers. Jessica came across the article saying she was moved to read the story and wanted to do something to help and has decided to host a fundraiser for Maryelizabeth. The fundraiser will be held at FFC Mortgage in Rutherford, NJ on February 16th, 2018 from 9am – 5pm. If you or anyone you know is in the area help share the love this Valentines week. Thank you Jessica and FFC Mortgage for hosting this. We are touched and grateful.