In short, I have Persistent Late-Stage Neurological Lyme Disease. Despite being initially treated within weeks of getting infected almost 5 years ago, I am still very ill on a daily basis. I have spent days and even weeks at a time bedridden for large parts of the day as a result of the numerous Lyme symptoms and side effects from medications. My treatments over the last 5 years have improved my health, but not significantly enough to allow me to return to work full time or care for my family in the way I could if I were healthy.
I have created this GoFundMe campaign to help cover the cost of an amazing treatment, available in Germany, which Lyme sufferers have repeatedly referred to as a cure for their symptoms (something rarely said about conventional treatment programs here)! My medical team has advised me that my best chances of healing to a point where I can resume what I consider a full and productive life would be for me to undergo a 3-week intensive treatment at Klinik St. Georg in Bad Aibling, Germany (the Klinik). The costs for two rounds of hyperthermia and antibiotic treatments, recovery and detoxification programs, supplements, lodging and travel will be very expensive and will have to be paid for out-of-pocket.
I have been working closely with the Klinik and thankfully I am approved for their treatment! As of March 23rd, 2019, the Klinik has reserved a spot for my care during July 8th through 24th of this year and I need your help to get there! The Klinik has had outstanding success treating patients like me with Late-Stage Neurological Lyme Disease and reports around 70-90% of similar patients are successfully treated. Those numbers are supported by the numerous stories I hear from those who have returned feeling like themselves again for the first time in years.
All the funds raised during this campaign will be used directly for treatment and associated costs both at the Klinik St. Georg as well as at-home medical expenses. A Lyme foundation has awarded me a grant to help pay for this treatment. However, it only covers part of the treatment costs.
Here is the breakdown of costs as provided by the Klinik:
My Treatment is 23.000,00€ , plus room and board for Matt and I for 21 nights at 2.849,70€, and since it has been scientifically proven that Lyme can be transmitted sexually, Matt will also undergo a Lyme partner treatment for an additional 4.000,00€, which equals a grand total of 29.849,70€, or approximately $33,366.
*This will ALL have to be paid prior to arriving at the Klinik and does NOT include travel and other related expenses.*
I would greatly appreciate ANY and ALL support you could give, be it financial, prayers and/or positive vibes or simply just sharing this campaign, for I believe it is of utmost importance to spread awareness about this debilitating disease.
For those that do not know the full story, my journey started innocently enough. As I often loved to do, I was spending time outside, hiking and simply enjoying nature in July. I never found the tick on me, never had a ‘bulls’ eye’ rash (PSA this is the case with about 70% of people infected with Lyme Disease), but about 3 weeks after spending a lot of time outdoors I came down with debilitating flu and meningitis-like symptoms. It was so bad I didn’t sleep because it was too painful to lay down. After my second night of barely sleeping sitting up in a fetal position on the couch my husband Matt reminded this was one of those times I need to go to the doctor. I consented and the doctor quickly sent me to the ER, where I stayed overnight. They performed multiple tests, but did not reach any diagnosis so I was released the next morning with a “clean” bill of health. Of course, this was terrifying because nothing had changed except for being given pain medications upon discharge, which for the record did nothing to ease the neck and shoulder pain I was experiencing. The one pending test result was the Lyme panel and 4 days later I got the now obvious call that I indeed had Lyme Disease.
Over the course of my Lyme journey I have come to know probably hundreds of chronic Lyme warriors and honestly I count myself as a lucky one. I had a doctor who pushed the ER to run that Lyme test and as a result I had my diagnosis and started a full course of treatment within weeks of infection. But I’m also unlucky that I’m in a small group (less that 5% I’ve been told) of patients who get treated right away but have symptoms that persist.
I’ve since learned that, like many others, I was suffering from the effects of multiple tick-borne co-infections including Babesia, Bartonella and Ehrlichia, which require different treatment regimens to eradicate. In the intervening time, my body responded to the infections that manifested with dysautonomia, POTS and adrenal fatigue, all contributing to debilitating fatigue, burning pain throughout my body that is centered around my back, neck and head, dizziness to the point where a simple one-on-one conversation typically makes me feel like I will pass out, brain fog that makes following a simple conversation an impossible chore, social anxiety and honestly with all that going on how can I not get depressed at times. It's left me unable to work at my beloved profession as a school counselor. For the past 5 years it's made it at times impossible to function as a mother to Charlotte and Matt has had to take care of us both, which of course he says he doesn't mind, but let's be honest it has been a huge burden.
Despite all the hardship, I am lucky that my family believed me and acknowledge the severity of my illness, which for many others is not the case. I am lucky to have family, friends and neighbors leap into action to help babysit Charlotte and drive her to school, deliver food or drive me to appointments. Unfortunately, and despite my luck, my symptoms persist and routinely it has been almost impossible to get out of bed due to my dizziness, fatigue, nausea and pain. We have done all we can think to do. Over time I’ve seen about 10 doctors with different lyme related specialties and average about 4 doctor appointments per month. For the past 18 months I’ve taken groups of 4-5 antibiotics at a time along with several expensive supplements. The majority of these appointments and supplements are not covered by insurance and as a result we spend on average nearly $1000/month for medical expenses. And at this point there isn’t an end in sight for that road of treatments. This is why I am committed to going to the Klinik St. Georg so that I can return to a full and productive life!
I am FOREVER GRATEFUL for Your Support!
--- There WILL Be Life Beyond Lyme! ---
Offline donations are also welcomes via:
Check: Mail to Sarah Steuer Wilson, 162 Brookline St #3, Cambridge MA 02139 (let me know it's on the way because we're not always great at checking mail ;)
Learn more about Lyme Disease here: https://www.lymedisease.org/
Learn about Hyperthermia Treatment from Dr. Douwes (see video) & Klinik St. Georg (https://www.klinik-st-georg.de/en/klinik-st-georg/lyme-specialized-center/)