MISDIAGNOSED

By BF (co-written by Bella)
I don't know what anyone is going through dealing with Lyme Disease, Chronic Lyme Disease and the Co-Infections. I had never heard of it until my best friend, Bella was diagnosed with Lyme Disease in 2002 (by Dr. Sweet, in Fort Myers, Florida) after being bit in 1996. She was misdiagnosed by other doctors for so many years and when finally diagnosed, it was too late as it was already in the late stage. She has been through 5 miscarriages. Sent to an Infectious Disease doctor (Dr. Kluge in Florida) after having a positive Elisa (Enzyme-linked Immunosorbent Assay) Test the doctor wouldn’t hear of it that she has Lyme. She was told she had a fever with a swollen spleen, and then sent to an Internist, then a Rheumatologist, then Aquatic Physical Therapy. All non LLMD’s saying she had Fibromyalgia and Chronic Fatigue. The Physical Therapist told Bella she didn’t have either one, then read to her from a medical book, looked at her and said “…I really think you have Lyme Disease…” She asked the Physical Therapist to tell her doctors, which they did and she was taken off PT and put on muscle relaxers and anxiety meds. She left home in 2008 in search of treatment in CT, NY & now in NC (her first 4 treatments and remissions were in Florida). She was so appreciative of her remissions to be able to dance, play, work and feel like herself again. Unfortunately, she fell ill with MRSA & relapsed again. She hasn't been able to do much of anything since. She was interviewed for "Into the Light" in hopes of walking again and much faith in medical system & treatments. “Into the Light” Gala for Lyme back in 2009 with new famous LLMD that was very involved in Andy Abrahams Wilson’s documentary "Under our Skin". During treatment the Edema was so extreme; she was so swollen and weighed 170 pounds. She currently has Chronic Lyme Disease and many of the Co-Infections that go along with it. She is too sick and her body to frail for treatment at this point. But her current LLMD is working on that - improving her muscle atrophy with Aquatic Physical Therapy exercises in her bathtub, as well as Magnesium baths for cleansing & detoxing. She drinks most of her food made in a blender with organic veggies, fruits, with green powder with lots of minerals and adds protein powder, which is her breakfast. Her LLMD has made diet changes as well. She takes a lot of pills both holistic & pharmaceutical. She will take a lot more pills when treatment starts. She will be starting 2 new pharmaceuticals in hopes of making her body stronger and eat more. Then more blood tests and treatment for Borrelia, Bartonella (both types), Babesiosis, and Rocky Mountain Fever. She also has Stage 4 Endometriosis& Mono. She has a positive Elisa Test with bulls eye rash. Positive Western Blot with 9 bands, positive Necrotic Lyme node (said to be cancer initially in surgery), but proved to be Bartonella. Yet still no one treated her for Bartonella, or anything else. She has had a positive Spinal Tap & MRI showing white matter in brain suggesting progressive MS, however the Spinal Tap proved otherwise. No MS flags in Spinal Fluid, rather evidence of Lyme & Co-infections. She is currently in a wheelchair and has been for 6 years, since MRSA destroyed her body with lots of help from Lyme & Co's. Now in 2014, weighing less than 90 pounds, still in a motorized wheelchair, bedridden, life has become harder each day. Her vision is going, which scares her. And, EXTREME PAIN is her main companion. Always with nausea, too much suffering! Her organs are under attack. She soaks in her magnesium filled tub, drinking water, listening to music to try and make herself feel better. Remembering the days of who she once was and wishing for the day to be that person again! I 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! This disease is a growing epidemic with cases emerging regularly. I will continue to support this disease in whatever way I can and spread the word.
Bella’s story … to be continued …