Lee County, FL
Diagnosed: late 2002
Current health: Struggling with multiple co-infections and frequent relapses
This is not easy. Life gets harder every day. –Bella M.
This story was written by Bella’s best friend, Jules, and first shared on Suffering the Silence, a community website for those suffering from chronic illnesses, including post treatment Lyme disease (PTLD), also known as “chronic Lyme.”* Bella, like many, was infected as a young child but struggled for years with mysterious illnesses before being diagnosed with Lyme. She continues to struggle today. Here, her friend explains…
“I had never heard of Lyme disease until my best friend, Bella, was diagnosed with it in 2002 after being bit by a tick in 1996. Bella was misdiagnosed by other doctors for so many years and when finally diagnosed, it was too late – the Lyme was already in the late stage. Now weighing less than 90 pounds, bedridden and contained to a motorized wheelchair, Bella is finding life becoming harder each day. Her vision is failing. Extreme pain and nausea are her constant companions. Her organs are under attack. I so wish this story had a different path and wish for the day she becomes the person she once was.
“First sent to an infectious disease doctor after having a positive ELISA (Enzyme-linked Immunosorbent Assay) test in the early 200s, the doctor wouldn’t hear of it that Bella had Lyme. Instead, Bella was told she had a fever with a swollen spleen, and sent to an internist, then a rheumatologist, and eventually aquatic physical therapy. The doctors diagnosed fibromyalgia and Chronic Fatigue Syndrome (CFS). However, the physical therapist told Bella she didn’t have either one, instead saying, “I really think you have Lyme disease…” Bella asked the physical therapist to speak with her doctors and she was taken off PT (physical therapy) and put on muscle relaxers and anxiety meds.
“Bella left Florida in 2008 in search of treatment in Connecticut, New York, an North Carolina. Bella began to improve — she was able to dance, play, work and feel like herself again. Unfortunately, shortly after treatment, Bella fell ill with Methicillin-resistant Staphylococcus aureus (MRSA) infection and relapsed again. She hasn’t been able to do much of anything since. During treatment the edema was so extreme — she was swollen and weighed 170 pounds!
Co-Infections and Complications
“Bella continues to suffer with post treatment Lyme disease (PTLD) and many of the co-infections that go along with it. She also has Stage 4 Endometriosis and Mono. She has suffered five miscarriages. She is too sick and her body to frail for treatment at this point. But her current LLMD (Lyme-literate medical doctor) is working on that – improving her muscle atrophy with aquatic physical therapy exercises and magnesium baths for cleansing and detoxing. Most of Bella’s food is made in a blender — organic veggies, fruits, green powder with lots of minerals, and protein powder. She takes a lot of pills both holistic and pharmaceutical and will take even more pills when treatment restarts.
Why the confusion??
“Bella had a positive ELISA test with a bullseye rash. She had a positive Western Blot with 9 bands and a positive Necrotic Lyme node (that later proved to be Bartonella). Yet still no one treated her for Lyme, Bartonella, or anything else. She has had a positive Spinal Tap and MRI showing white matter in brain suggesting progressive MS, but ultimately diagnosed as further evidence of Lyme and related co-infections. She is currently in a wheelchair and has been for six years.
“I so wish every day I could be by her side and for “my Bella’ to get better and be who she once was when I first met her, so full of life, love, and happiness. Lyme disease is a growing epidemic. I will continue to support this disease in whatever way I can and spread the word.”
*Excerpts from Lyme stories have been shared between Bay Area Lyme Foundation and Suffering the Silence as part of an ongoing partnership between the organizations and with the permission of the authors.