Dear friends and loved ones of Heather,
As you may or may not be aware, my wife Heather is currently facing a serious medical crisis. She was misdiagnosed with an auto-immune disease 20 years ago, after waking up with no movement of her neck that lasted for four months. This was accompanied by severe fatigue, flu like symptoms, joint and muscle pain that was incapacitating.
Earlier that same year she was also bitten by a deer tick and exhibited a bulls eye rash. She tested negative for lyme. At the time we did not know typical ELISA and Western Blot performed by your PCP are less than 50% accurate and false negatives are the norm. She was also tested immediately after being bitten, but Lyme antibodies will often not show up on blood work for 2-6 months. This is when she began living with an invisible illness in chronic and debilitating pain, with no awareness that this was in fact Lyme Disease and not Fibromyalgia.
I have watched Heather live in pain all these years with a host of medical problems, ER visits, surgeries, and hospital stays. I am acutely aware of the fact she has had to work 10 times harder than a healthy person to accomplish her goals, but she has never given up. In spite of living with chronic illness Heather has always gone after her dreams and has lived life to the fullest.
She worked in film, traveled, and later earned her graduate degree. She became a psychotherapist, using her gifts to help others, providing therapy to military personnel, and doing grief work with terminally ill patients and their families. In addition to her work in hospice she opened her heart even further working in a hospital setting in pediatric oncology and also took on the role of managing programs and providing therapy services for adults and children for a non-profit cancer organzation. While her work has been so meaningful to her, by far her greatest joy has been becoming a mother. With her health issues bringing our son into the world was not an easy journey. Again, Heather never quit. She has always been an ambitious, loving, giving spirit, with a great sense of adventure, who appreciates all the beauty of life.
This is what living with invisible illness looks like
Heather and Baylin before Lyme treatment
After our son was born in 2011 further health problems began to manifest and she was unable to return to work. She began to rapidly decline over the summer of 2017 with severe symptoms that impeded her ability to physically function daily. We knew something was terribly wrong.
This past July, she received the answers to the medical issues that have plagued Heather her entire adult life. It was not until Heather had a full IGeneX DNA blood panel for Lyme and co-infections that she was finally properly diagnosed with a rare strain of Chronic Late Stage Neurological Lyme Disease (Borreliosis/Relapsing Fever). This strain of Lyme causes inflammation of the brain, severe neurological symptoms, seizures, involuntary body tremors, impaired muscle movement, flu like symptoms, joint, nerve, and bone pain. Heather has also been diagnosed with three co-infections known as Babesia, Ehlichiosis, and Rickettsia. These co-infections have infiltrated the body causing further damage.
Lyme has been called the great imitator mimicking fibromyalgia, chronic fatigue, MS, and ALS and other illnesses. Because doctors are typically not educated on Late Stage Neurological Lyme, and often use ineffective testing, it is not uncommon for people to go misdiagnosed for 15-20 years. Since Heather spent 20 years treating symptoms of the illness but not treating the infection itself, her illness has progressed unchecked and is affecting many of her organs, tissues, and systems, including her brain and central nervous system.
In September, Heather began aggressive Lyme Disease treatment with her Lyme specialist and neurologist. Unfortunately, she began having seizures, and now has daily difficulty with her speech, cognition, and suffers with painful involuntary full body tremors that can last all day. This is due to antibiotic treatment, which causes herxheimer reactions as the bacteria dies off and often makes symptoms worse before they get better. In addition she lives with head pressure, extreme weakness, fatigue and severe pain. She recently suffered a Transient Ischemic Attack (mini stroke) and has been in the ER 3 times since the onset of treatment. Heather's seizures are now accompanied by complete temporary speech loss. She is primarily bed bound; and currently requires use of a wheelchair, which makes it difficult for her to function daily and care for our 6 year old son Baylin.
ER with seziures, loss of speech, elevated heart rate
$1,088.00 Out of pocket on medications this month
The financial burden that comes with Lyme disease treatment is significant. It is my hope we can create a network of financial support to aid us on Heather's fight to regain her health. With the lack of awareness and research that comes with Neurological Lyme Disease, almost all of the costs are out of pocket due at the time of service. The political division of the medical community around proper Lyme treatments is a major culprit in insurance companies refusal to pay medical costs such as diagnostic tests, bi-monthly labs, doctor visits, brain scans, certain medications, and supplemental treatments that can help the body detox and increase bacterial die off while easing symptoms.
The total treatment protocol will last approximately 2 years and will most likely require installation of a picc line for IV antibiotic treatment once all three co-infections have been targeted. Each co-infection will take 3 to 6 months individually of oral antibiotics to treat. IV treatment may be 6-12 months and can be up to $25,000-35,000 a round. All donations will go to these medical expenses, medications, and supplemental treatments not covered by insurance, in addition to medical meal delivery service and caregiver for her and our son.
Another day in the life of Lyme treatment
Brain Scan not covered by insurance, payment due at the time of service
Heather continues to fight against what seems like a insurmountable journey with grace and humor. She remains a loving wife and mother in the darkest times and is still envisioning the life she will regain. Her heart is broken for Baylin, who has lost the mother he once knew. He has had to endure seeing Heather having seizures and witness medical personal caring for her. She remains acutely aware of how precious life is and what a gift family and friends are. We consider the love of friends, family, and strangers our personal arsenal to remain steadfast in our determination to beat this illness.
Thank you for reading and for your support, friendship and love. Please consider donating towards Heather’s medical treatment and giving her the chance to live life as it should be lived: thriving and healthy. We would appreciate you sharing Heather’s story with others and encourage them to donate if they feel called, or to simply send prayers and healing thoughts for her long challenging journey of treatment.
Chris, Heather and Baylin
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