Wednesday, August 7, 2019

Continuing Bella's Story

We are going to take a turn in Bella's story and talk about behind the scenes and who has taken care of Bella for all these years, her husband, Jack.

Jack and Bella were a young couple, healthy, and so in love.  They had a beautiful home in Southwest Florida, jobs they loved and friends they loved.

After they found out Bella had Lyme Disease, Jack transferred MRSA from a co-worker to Bella which in turn triggered all the co-infections & Babesia.  Jack had to make a choice to either stay and work or to care for Bella.  Jack stayed true to his vows he made to Bella on their wedding day "...in sickness and in health, till death do they part..."  Jack quit his job and they traveled around to multiple states trying to get Bella treatments, succeeded in some states, not in others.  At one time, they lived in an RV at a campground, while Bella had a central line and Jack did whatever he had to do for work (cleaned toilets at the campground and other odd jobs) for money to get them by and for Bella's treatments/medical bills.  Jack was Bella's homecare nurse for 20+ years.

As Jack was doing everything he could for Bella, he unfortunately got bite by a tick as well.  He was taking antibiotics, trying to keep his health up, while caring for Bella too.  As their house in North Carolina was a rental, and they had to be out of soon, they were moving to a FEMA trailer to afford to finish "Little Bella Blue" house.  A house that Jack was building with 4 tools, for them to live without a payment so they could affordable Bella's treatments.

It is with a heavy heart that I tell you Jack passed away in their North Carolina home this past May.  Bella is currently in Florida with her 7 fur babies, trying to figure out what her next step is.  Trying to find a Dr. who will treat her Lyme Disease.  The day Jack passed away he was rolling quarters to get Bella's seizure medication.

From 2002, Jack videoed their whole journey.  We hope one day we can share their journey with everyone because this is a story that needs to be told.  This is a condensed version of Jack and Bella's life story.

We are starting a Go Fund Me account for Bella, to help her get re-established in life, and to help get her the blood cleaning treatment.

Sunday, July 14, 2019

Bella's Story

Written by Bella & her Best Friend Jules

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 Disease. 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 …