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Help Maryel Bite Back & Fight Lyme

$19,165 of $20,000 goal

Raised by 187 people in 7 months
Created January 27, 2018
Michele Sant
on behalf of Maryelizabeth Carter
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. 

If you would like to learn more about Lyme Disease visit  www.lymedisease.org for additional information.

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I want to thank all of my friends from next door to the other side of the world for donating to my gofundme. You are amazing, caring and generous. Without you, I wouldn't be able to pay my medical bills off. Unfortunately, they continue to add up. A lot has happened since my last post. Apparently, Lyme disease can trigger a number of viruses and diseases when your immune and nervous system are attacked. I am currently working with a new team of physicians that are determined to make my quality of life better. Over the next few weeks, I will be having numerous tests done. I'm sick and tired of feeling sick and tired. I want my life back.

Thank you to those of you that have donated or checked in on me. Special thanks to Michele for keeping the Underground Trainers going strong!
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Thank you to everyone who has supported me and sent me cards, emails and checked in on me. A lot has changed in a month but I think it is all for the better. I have a new medical team I am working with and
I am really excited. It is a bit tough because it is as if we are starting at the very beginning trying to figure out why certain things are the way they are. How do I feel great one day and then violently sick for 6 days? I have met with or talked to a number of medical professionals around the states and some have given me great advice. Most recently I got on a plane to speak to a highly recommended doctor in the LA area. I spent more time sleeping in bed than I did doing anything else but the weather completely took the pain off of my joints and It really helped. The flight was pretty rough and that is a lot coming from someone who would fly around the world for hours and hours. I have been building my strength up since I lost 90% of my muscle this past year and I have been trying to stay positive. Ever since California, I have been absolutely positive on my situation and the support that I have. Thank you so much to all of you. I have some really funny stories and also some crazy ones that I hope to share with you as time goes by. If I didn't laugh at all the crazy, I would just cry and who wants to cry? I just want to smile and feel 100% again. I love hearing from you all and just like you have been here for me, I am here for you. Will write an update after my next group of tests over the next month.
Lots of love,
Maryelizabeth
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We are coming up on the one year anniversary of Maryelizabeth's diagnosis and we wish we had good news but it has been a rough month. She had to shave half her hair off due to hair loss. She said she would look kind of cool if she were 20 years younger but it is just hair. She was given a few new medications which made her violently ill sending Maryel to the hospital via ambulance. We would like to thank the Rutherford Ambulance Squad for showing up within minutes of the 911 call. You guys are fantastic! Almost all medication has been temporarily stopped due to side effects from the prescribed medication which has also set her back in any progress she was making. Maryelizabeth will find out tomorrow what steps will be taken next to stop or slow down any neurological damage or spreading of the disease. A 4th virus due to the Lyme disease was detected in Maryelizabeth's most recent bloodwork. It has been a rough month and we are just staying positive. Due to side effects from the Lyme disease , Maryelizabeth has trouble reading and typing but she is determined to send everyone a thank you so she wants us to let you know that if you have donated and not received a response that you will get one. She will be writing her own update once she gets an evaluation from the new physician she is meeting with this week. A very big thank you to Norberto Maldonado FFC Mortgage in Rutherford for having a bake sale fund raiser for Maryelizabeth! Jessica Maldonado and staff went above and beyond raising close to $1500 for Maryel. Thank you to every one who donated, baked and just showed up. Maryelizabeth was absolutely moved by all of the messages from those that attended. It was a great example of a local business owner and the community getting together to help a fellow small business owner and Rutherfordian. Thank you so much for everything! Maryel continues to fight and will send an update later this week. Thank you for your continued support.
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I was asked to do an interview later this week and I realized that I haven't posted an update recently which is incredibly rude. Thank you to everyone that attended the fantastic fundraiser that Norberto Maldonado FFC Mortgage held for me. My mother and friends attended and said it was absolutely beautiful and to everyone that baked and took the time to make it so special thank you thank you thank you. Tears are running down my face when I tell you that they raised upwards of $1,700. I have never met these sweet people before and this was a perfect example of our community coming together based on an article that I didn't know was being written. I continue to write thank you notes to everyone so if you did not get a thank you yet from me, I promise it is coming and I am not intentionally being rude. Unfortunately, my health has gotten a bit worse and it has prevented me from doing most things but I am going to have to seek out a few other opinions of some doctors in the states to prevent permanent neurological damage. All things considered, I am in good spirits. The Underground Trainers is open and doing well! Michele is taking on clients So, if you are looking to get that summer booty in shape, you can email her at theundergroundtrainers (at)gmail.com I want to thank everyone that has called, texted, donated, sent me a card, etc.
Every single message I hold so close to my heart. I want to thank the Daily Voice for writing the story which brought me and Maldonado FFC Mortgage together and also for checking in on me to see how my health is. To the amazing people at FFC Mortgage, I have been just so down and out but as soon as I can, I will stop by and visit you all. Thank you so very much for everything. Just...thank you. From the bottom of my heart. Thank you.

http://lyndhurst.dailyvoice.com/neighbors/lyme-disease-has-rutherford-woman-fighting-for-her-life/732290/
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$19,165 of $20,000 goal

Raised by 187 people in 7 months
Created January 27, 2018
Michele Sant
on behalf of Maryelizabeth Carter
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