One Lyme Patient’s Challenging Quest to Donate Her Body to Science in Her Final Days

BAL Spotlight Series

In Puerto Rico, Donating Your Body to Science is Almost Impossible

Luisette Mauras Rodriguez is lying in bed at home in Guyana, Puerto Rico, waiting to die. She’s 46 years old, her body ravaged by Lyme, numerous tick-borne coinfections, and a multitude of other hits caused by environmental exposure to toxins like black mold, fungus, mycoplasma, and chikungunya virus. Family members do not understand her illness and laugh at her ‘exaggerations.’ Her husband left her because he fears getting sick and his religious convictions cause him to question the validity of her condition. Her mother, formerly a registered nurse, has abandoned her to her fate. Whenever Luisette gets desperate for help and goes to the ER, they refer her to the psych ward saying her illness is fabricated.

A former professional lab technician who worked in pharmaceutical development with US companies like Wyeth, SmithKline Beecham, and IPR Pharmaceuticals, Luisette has one dying wish: to donate her body to the Lyme Disease Biobank (LDB) so that samples from her brain, joints, organs, and tissues will be used to fuel much-needed research into Lyme and tick-borne diseases. She has registered with the National Disease Research Interchange (NDRI) in Philadelphia to have her body collected after her death, but as of writing this article, staff there are unable to find any medical professional on the island willing to partner with them to ensure this happens.

“We have been unsuccessful in securing anyone for recovery for the donor located in Puerto Rico. It has been very difficult getting anyone to follow up with us on top of the language barrier. We were trying to give the pathology department at the University time to get back to us but they seem to be very busy. The complexity of the recovery also makes it more difficult as well.” — Wauchita Green, Manager, Organ & Tissue Source Sites, NDRI, The National Disease Research Interchange

Finding Answers is Her Dying Wish

For a scientist with a degree in chemistry, the pursuit of knowledge and answers is a fundamental aspect of Luisette’s character. Her 20-year health struggle with Lyme is ending in absolute physical disability and ongoing mental anguish. Yet the idea of dying is made bearable by the prospect of scientists developing greater understanding of tick-borne infections by studying her tissues. But there are insurmountable barriers to her achieving this final, selfless act of courage.

“I know I will die soon; all the signs are there. My body is literally putrefying in front of my eyes. I can no longer eat or digest anything. I just want to donate my body to the Lyme Disease Biobank so others who come after me don’t go through this hell, but there’s nobody here in Puerto Rico who will help us do it.”

Although zoonotic diseases transmitted by mosquitoes like malaria and zika are widely understood and treatment is readily available in Puerto Rico, medical ignorance about ticks is a significant hurdle. With no doctors knowledgeable about treating chronic/persistent Lyme on the island, and almost zero awareness of tick-borne diseases in this US territory, it’s been impossible for Luisette to find anyone to take her illness seriously. Plus, Puerto Rico is an extremely conservative place. Cultural and religious beliefs add layers of additional pain to her already desperate situation. 

“My family believes that I have done something in my life that caused this illness. They believe that God is punishing me. And until I make it right with God, I will continue to be this way. They don’t understand—and they don’t want to understand—that there are pathogens in my body that have caused this horrible situation.”

The other major driver in Luisette’s determination to donate her body to LDB is her 17-year-old son, Louis. He is also sick and has faced a multitude of physical and mental problems since the day he was born. Luisette is convinced that she passed tick-borne pathogens to him when she was pregnant and that he has congenital Lyme. She worries about what will happen to him after she dies. “I believe he is already on the verge of the later stages of Lyme. He cannot get any treatment here. The doctors washed their hands of him—just as they have done with me.” Her voice breaks for the first time as she ponders her child’s fate.

Exposure to Ticks During Summer Internships?

Luisette was a model student. She did extremely well at school and always loved science. Studying chemistry, she worked to position herself for an excellent job in pharmaceuticals in Puerto Rico. For two summers, she worked internships in the contiguous US: in 1996 she won a paid internship at SmithKline Beecham Pharmaceuticals’ R&D division in King of Prussia, Pennsylvania. And in the summer of 1997, she worked in a lab at Cornell University in upstate New York. She was the youngest person in the lab and the only scientist who was an undergraduate at the time.

“After work each day during both of these internships, I would go out walking in the woods and on trails nearby. It was beautiful and I loved being out in nature. Nobody ever said anything to me about the dangers of ticks, or that they harbored pathogens. I remember picking ticks off myself numerous times. I didn’t think anything of it.”

Luisette’s battle with various inexplicable illnesses began with the onset of anxiety and depression in her early 20s. Her mental health declined, and she was treated for these symptoms, but showed little progress. Later, as physical issues began to emerge, like many Lyme patients, Luisette found herself on an endless quest for a diagnosis and treatments, but as all the standard tests performed on her kept coming back negative, she was quickly labeled as a ‘problem patient.’ Despite these ongoing challenges, Luisette married and gave birth to her son. But the decade following his birth brought more declines in her health and inexplicable medical problems. She went looking for answers online and finally started to uncover what was at the root of both her issues and her son’s developing problems.

Internet Searches Started Providing Answers

“In 2016, I started to learn about Lyme and tick-borne diseases and all of a sudden, I understood what was wrong with me. I would go to the ER and tell them that I had Lyme, and they would look it up according to the CDC protocols and say ‘Oh – that’s curable.’ But of course, by the time I was being seen, I was already chronically ill and the treatment would not work. I was stuck in a spiral, constantly dismissed, and abused. The doctors in Puerto Rico who did have any empathy or understanding of my condition would tell me they couldn’t treat me here and that I had to go to the US.”

As Luisette’s condition worsened and dragged on into years of not receiving appropriate treatment on the island, she sought help from doctors who promoted that they were knowledgeable about treating Lyme, so she traveled to the East Coast multiple times, seeing providers from CT to FL. Her experiences, so filled with hope, would quickly devolve into deepening despair as she found herself subject to questionable therapeutics, useless medications, and unproven protocols that left her sicker than before the treatment, plus tens of thousands of dollars poorer and even more isolated and afraid for her future. 

Reflecting on her situation, Luisette cannot help but be angry.

“I don’t understand how you can take your dog or cat to the veterinarian when they are sick and they can get tested for borrelia, or Bartonella or other pathogens and get treatment and get better! It’s scandalous to me. It’s a crime. When I think about the inhumane treatment I have gone through over the years and that I still cannot get anyone here in Puerto Rico to listen to me, I know I am a victim of medical abuse and medical malpractice. This situation is criminal.”

When Luisette learned about Bay Area Lyme and the Lyme Disease Biobank program, she felt that her search for answers may not be completely in vain. “I know it’s too late for me because I am dying, but maybe one of the BAL or LDB research projects will develop acute and chronic diagnostics that will prove that we are really sick and it’s not all in our minds. I just pray every day that it’s not too late for my son to get help.”