Stephanie Wright's Fight To Beat Lyme

Following a long battle with Lyme disease, Stephanie is in need of a level 3 Invasive Cardiopulmonary Test (ICPET) at Mass General Brigham's Center for Chest Diseases in Boston. Her doctors have diagnosed her as having heart preload failure as a result of neurological complications caused by late stage Lyme disease. This specialized testing is the only way to confirm this diagnosis, the degree of severity and treatment but her insurance company, Anthem has repeatedly denied & delayed coverage of this costly medically necessary procedure. Stephanie was also accepted as one of 50 patients into an NIH phase 3 randomized control study being conducted at Mass General Brigham and led by Dr. David Systrom. This study is expected to close in late October and if she does not secure approval or funding in time, she will lose her opportunity to participate in this important trial.

Stephanie's story
Many of you know that I have been battling the complications of neurological Lyme disease for the last 8 years. My oldest daughter, Brooke launched this Go-fund medical campaign for me but I have been a bit of a coward and not promoted it. Today, I'm finally setting aside my pride to speak about my situation & openly share the campaign.

Putting my life on hold
It's been a long & difficult journey. My youngest daughter, True is now 15 yrs old and cannot even remember what life was like before I became ill. The aftermath of advanced Lyme disease has left me impaired to the point that even basic daily activities such as household chores, walking, driving, using my computer or socializing can trigger relapses of crushing fatigue, full body spasms & migraine like headaches that go through one side of my head and neck. I have better days and even stretches of time where I feel well enough to try to take part in normal life. These "better" days are amazing & I try to catch up with people, do the things I've missed or begin a project in clay and get as much out of them as I possibly can. But there is always a relapse. These relapses leave me too weak to sit up or hold up my rib cage and can take days or weeks to recover from.

Fatigue & pain are one thing but I also experience bizarre daily episodes of shortness of breath with a squeezing chest pressure that runs down my left arm, as my heart races, I become nauseous & weak. I'm sweating while my hands & feet become discolored & cold. Over the years I've had numerous cardio-pulmonary-neurologic studies in Maine, Boston & Connecticut. MRI's revealed inflammatory demyelination in my cervical spine. My neurologist diagnosed this as an HLA-linked autoimmune disease triggered by Lyme disease that occurs in some people who are genetically susceptible. But no test has ever provided an explanation for what exactly was happening to me. Without better options, ongoing treatment has focused on managing symptoms with immune modulating therapies, occupational intervention, physical rehab and nutritional support.

My breakthrough moment
This last year was especially discouraging, I lost a lot of ground, even pre-Covid19 spending much of my time housebound and unable to do any of my Mod Mud ceramic work. I returned to researching and discovered a new study paper released in 2019 by pulmonologist, Dr. David Systrom from Mass General Brigham that described many of the symptoms I've been experiencing. In February, I brought the paper to my primary care physician and requested a test that he agreed to do which revealed that I have Postural Orthostatic Tachycardia (POTS), which is a malfunction of the autonomic nervous system that results in vascular dysregulation. 

I was referred to MGB's Center for Chest diseases where NIH studies are being conducted with POTS, ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue) patients, many of which have a history of Lyme disease or viral illness. I've been twice to MGB where I underwent a series of pulmonary function tests that indicated I need this higher level testing procedure, level 3 CPET (ICPET) Invasive Cardio-Pulmonary Testing. It's a sophisticated form of exercise testing whereby pulmonary artery and radial artery catheters are placed to measure blood flow and filling pressures of the heart, oxygen content and other factors. Systrom & colleagues have found that in 99% of patients with my symptoms that they have tested have Heart Preload Failure (PLF) or low filling pressures of blood in the heart chambers due to insufficient constriction of veins and reduced return of blood to the right side of the heart. They believe I have PLF which is causing my POTS symptoms. ICPET is the only way to confirm this diagnosis, the degree of severity and treatment. 

I was then accepted to be one of 50 patients into a phase 3 randomized control study being conducted at MGB and led by Dr. Systrom. The study is limited to patients meeting the medical criteria for Myalgic Encephalomyelitis / Chronic Fatigue (ME/CFS or POTS) AND who have a clinically indicated ICPET. Participation in the study would immediately follow my ICPET where response to pyridostigmine (Mestinon) a parasympathetic drug that targets preload failure is measured by repeat ICPET along with other important data. This was such an exciting opportunity for me to be on the frontline of this breakthrough research & the insights gained by being a part of the study! I would be one of the few, if not only, LYME patients selected from Maine.

Battling Our Healthcare System . . . it will wear you down.
My ICPET was scheduled for 8/21/20 & was to be performed by Dr. Aaron Waxman, Director of Pulmonary Vascular Disease @ MGB but then Anthem denied coverage so my test and study participation were cancelled. My doctors filed an appeal which was denied. I then reached out to Consumers for Affordable Health Care, a wonderful organization in Augusta that has taken on my case. They are guiding me so that each step from here is properly documented and argued as well as possible. But the MGB study is expected to close by the end of October and if I do not secure Anthem's approval & funding in time, I will lose my place. 

To be so close to a proper diagnosis & potential treatment that could restore even some quality of life only to be denied access by Anthem has been heartbreaking. Battling with the Healthcare system & dealing with the expenses associated with my illness for years has just been a part of our "normal" life with chronic illness. But like so many people right now, my husband's business has been decimated by Covid19 and with Anthem denying & delaying coverage, we were seeing my chance to move forward with testing & treatment slipping away. 

This is a rare opportunity to be a part of something "Bigger than just me alone stuck in my own illness". Personally, being in this study provides not only meaningful insights into my own illness but an opportunity to share firsthand experience, spread awareness and hope for a path toward wellness for many others in the patient community who are also suffering without answers. I often have the feeling that I’m living an insignificant life, but I’m lucky to be surrounded by loving family and friends who honor my despair but they also inspire me, encourage me, value me and entertain me. 

My daughter, Brooke's perseverance to see me succeed in having this testing & treatment, has shown a bright spotlight on my personal plight. I'm truly humbled to find myself in this position. These are difficult times for so many people, the compassion and support that I am receiving are more than I could ask for and have renewed my commitment to not give up the good fight! I AM BEYOND GRATEFULl!!!

Thank you for reading, sharing and supporting in any way!

Donate
Any amount is welcome, no amount is too small and every contribution will help us reach our goal!

Your donation will help cover 
The costs of testing and treatment not be covered by Anthem even if we succeed in winning our full appeal. The out of pocket costs associated with the ICPET will be $13,000 with insurance coverage and more than $30,000 without.

The costs of ICPET that are not covered by insurance.
The costs of further neurological studies including nerve biopsy, not covered by insurance.
The costs of preliminary cardio-pulmonary tests that were not covered by insurance.
The costs of the second study-related ICPET & all follow ups related to the study will be covered by her participation in the Mestinon Study.

Other ways you can help
Please share this fundraiser link on social media, email or any other way that you feel comfortable. Read the links and share Stephanie's story to help raise awareness surrounding this complicated disease, the complexities of diagnosing & treating the growing number of people suffering due to misinformation, misdiagnosis, inadequately funded research and the barriers to care being put up by insurance companies. Please reach out to us if you have an idea to help!

Learn More About POTS, ME/CFS and Lyme disease
Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure.
Approximately 25% of POTS patients are disabled and unable to work. Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney for kidney failure.

https://www.ncbi.nlm.nih.gov/books/NBK459459/
https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
http://www.dysautonomiainternational.org/page.php?ID=34
https://solvecfs.org/about-the-disease/
http://www.mldse.org

Consumers for Affordable Healthcare
https://www.mainecahc.org

Learn More About the Study 
https://clinicaltrials.gov/ct2/show/NCT03674541
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860548/