Hello, my name is Patti. I am reaching out to raise funds for Long-COVID treatment through EPIC Brain Centers in Reno, NV, which medical insurance does not cover.
At age 58, I was nearing the end of my role as an active parent and planning the exciting next phase of my life—opening a body wellness clinic to provide Cranial Sacral, Myofascial, and FSM therapy as a manual therapist. However, my hopes for the future came crashing down in early March 2020 when it appears that I became the second person in Clark County, WA, to contract COVID-19. During the initial 90 days, I was fighting for my life as COVID attacked several of my organs, leaving many damaged. COVID induced both bleeding and clotting events throughout my body, as well as a brain stem stroke that caused sensory, motor, and vision loss. I assumed that once I fought to survive the initial virus, I would recover. Four years later, this is not the case. Unfortunately, it was only the beginning: COVID has since caused a severe autoimmune syndrome, chronic brain stem dysfunction, encephalitis, lung damage, immediate memory, cognitive, vision, and balance impairment, GI and sleep disorders, chronic fatigue, and abnormal activation of my sympathetic nervous system, resulting in chemical PTSD and extreme anxiety symptoms.
The PTSD and anxiety are particularly damaging as they appear to be accelerating the progression of the autoimmune disorder, mast cell activation syndrome (MCAS), which now includes anaphylaxis. The Electro Magnetic Brain Pulse (EMBP) procedure at EPIC Brain Centers has proven to be a successful non-invasive, non-pharmaceutical treatment for several of the cognitive/brain dysfunctions I am experiencing. I recognize that it will not address all of my current medical diagnoses, but the available data suggests that if the underlying PTSD and anxiety are treated, the progression rate of the MCAS disease will significantly slow, profoundly improving the quality of my life. This is a non-covered procedure: the CDC, NIH, and FDA have no treatment protocols for Long COVID, so any associated insurance claims are automatically denied as off-label use or experimental.
EPIC Brain Centers is located in Reno, NV, a nine-hour drive from my home, and daily treatments are required for a period of 2-3 weeks, depending on how quickly my body responds to them. I will necessarily have to travel with my husband, who will care for me and manage all transportation and meals during that time. He is currently arranging to work remotely while there. All of the funds that you graciously donate will be solely and specifically used to cover the cost of the procedure, car rental, fuel, housing, and food. The additional wish list is for financial relief of past and ongoing medical expenses of the past four years. Every contribution, no matter the size, will make a meaningful difference. My family and I are extremely grateful for any donation towards this promising treatment.
Those who know me personally can attest that throughout my career as an Occupational Therapist, I have been a tenacious patient advocate, determined to help my patients as much as I could. As Long-COVID is a newly emergent disease, I have dedicated these past years to researching the most current data published by the international medical community regarding symptomatology and treatments. I widely share this information with my health team and members of the Long-COVID support communities I belong to and will continue promoting patient advocacy through education and discourse. Although I am currently dependent on others due to cognitive, memory, stamina, and movement issues, and still struggling with grief and loss, I am not paralyzed by hopelessness. I am a strong woman of faith and take heart that this treatment will vitally increase my functional abilities so that I will be able to renew my plans and pursue my passion: facilitating healing in others.
Thank you for taking the time to sit with me while reading about my hopes and needs. In my case, it really does take a village to facilitate my healing.
Regardless of whether you are able to donate, if you could please spread the request and share the link, or repost on your personal accounts, or post the flyer of this fundraiser to any social media account, to friends, and churches/community organizations. Knowing of your kindness, thoughts, prayers, and actions truly lifts my spirits as I continue to fight to regain my independence and previous life roles.
****If interested in hearing the testimony of my spiritual journey to my congregation during this illness, check out the link.
As I said in my video, because I have exhausted all medical opportunities over the past four years, I believe healing will only come directly from God, from the people God brings into my life, and by listening to my own body. The EMBP connection qualifies as “God bringing a person into my life.”
In 2020, when I was acutely ill, before my stroke, I suspected my days on this earth were limited. In addition to the legal preparations my husband and I made due to the severity of my illness, I personally reflected on my life, important milestones, decisions, and the people who had positively changed my trajectory into adulthood.
Two individuals were instrumental in my youth and had faith and confidence in my abilities beyond what I could envision. Unfortunately, one of these people had already passed away. I wondered if I could find the contact information for the other person. During a search on Facebook, I found her name, but it appeared strange, and Facebook said she did not have an account. Not knowing if she would ever see it, I wrote my gratitude to her on this strange account anyway, thanking her for all her guidance and compassion as my high school counselor. Decades earlier, she had guided my path to college, which was the beginning of a passionate career and a full, fabulous life. I sent the message off, not expecting a response but going through the exercise of recognizing the gratitude and appreciation for her support during that milestone.
Four years went by with no response, then unexpectedly, I got a response. She had received my message through an obscure work account. In follow-up conversations, I eventually shared my illness, and she shared her life’s work and career. To both of our immediate surprise, we felt our reconnection was divinely directed, since she now works in brain health and could offer Electro Magnetic Brain Pulse (EMBP) treatments specifically to me. Her center has experienced positive results with EMBP and Long COVID. In addition to this promising news, the confidence of its delivery coming from a provider who genuinely cares about me is an added plus. Heartstrings still intact from almost 45 years ago, and she was able to secure me a family discount on pricing. I am so grateful and see this renewed connection as not coincidental.
GO FUND ME- Work sheet
Primary Focus and Hope for Experimental Treatment for Long Covid. The total for this priority treatment is just under $20,000 There is NO insurance coverage for ANY Long Covid Treatments as according to the CDC and NIH there are no treatments, nor will there likely be for at least a decade. Any treatments that do demonstrate hope or results, are according to the insurance company “Off Label use” or “Experimental” so they will not pay for any symptoms associated with Long Covid. Out of the box thinking Doctors may be willing to try to “find” a diagnosis similar but are often restricted when wanting to increase pharmaceutical dosages beyond the typical similar diagnosis. After 38 yrs. as a healthcare worker, I have never experienced such horrific politics of medicine. Insurance companies, not doctors, get to decide your care.
Estimated cost for procedure total is just under $20,000
The cost of 2-3 weeks daily treatment and testing. $5,000-$10,000
Housing for Patti and her spouse for 2-3 weeks. $2,500
Food for two for 21 days $2,520
Car rental $130/day for 21 days. $2,730
Gas: 5 tanks of fuel for driving round trip Vancouver - Reno and daily from apartment to clinic $713
Spouse will work remotely while I undergo treatments.
Dream/wish for help with financial and economic burdens from loss of Patti’s income, accumulated medical bills from the past 4 years, and delayed attention to domestic issues due to Patti’s new level of dependence.
Accumulated medical bills from past 4 years at $10,000 per year, with $20,000 remaining debt - on going
Pharmaceutical costs plus deductible $10,000/yr. - ongoing
Domestic help with cleaning the house $4,000/yr.
Acupuncture and herbal consultation for GI and Pain management - $2,100/yr. - on going
Counseling to deal with Grief, Pain management, depression and PTSD $1,250/yr. - on going
Help for paying for weekly drivers to/from medical appointments beyond ½ mile from home. $50 a week/ $2,600/yr. - on going
Total for procedure: $20,000. Total Dream Relief Request is $50,000 including fees to GoFundMe.