Help Ellen Fight Lyme Disease!

Please Help Support Ellen’s Ongoing Battle with Lyme Disease

We’re posting this GoFundMe in support of Ellen Sweezey, who has been struggling with the physical, mental and financial consequences of having contracted Lyme disease. If any of you have spent time with Ellen in the past couple of years, you may have witnessed the devastating impact that Lyme disease has had on her quality of life.

Before contracting Lyme disease, Ellen was a highly energetic and fun-loving person; a roller derby rock star, who would often be seen training at the gym or running trails in the woods with great ease.

Ellen had to abandon this lifestyle due to a sudden change in health that included a long range of symptoms such as neurological issues, chronic fatigue and extreme allergic responses. You may have observed times when Ellen has required the use of a wheel chair in order to get through a day of teaching.

For those who don’t know, Lyme disease is a serious bacterial illness commonly transmitted by infected deer ticks, usually the size of a poppy seed. Ellen’s active outdoor lifestyle put her at a high risk for tick bite and Lyme disease infection. Although in some cases, Lyme can be identified at an early stage by the presence of a “bullseye”-shaped rash. Most sufferers (like Ellen) did not observe the tick bite or rash when it occurred.

If left untreated, Lyme can damage many areas of the body (e.g., brain lesions, arthritic symptoms, neurological problems, muscle wasting, heart issues, etc.). Lyme disease can make life unbearable, and can sometimes be fatal. Lyme patients have often been misdiagnosed with other disorders such as Fibromyalgia, Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, ALS, and Bell’s Palsy. Without diagnosis, sufferers are often told their symptoms are psychosomatic.

Unfortunately, if Lyme isn’t detected at an early stage, it is not easily eliminated through a simple course of antibiotics, as the bacteria is believed to evade antibiotics by burrowing, hiding and forming protective films. Lyme is also commonly transmitted with a number of other co-infections such as those identified in Ellen’s tests. Collectively, these infections can cause many other problems and can also weaken the immune system causing further complications.

The tests conclusively showed that Ellen had been exposed to the Lyme bacteria (Borrelia), as well as four common co-infections of Lyme: Bartonella, Babesia, Rickettsia and Ehrlichia. Although the test proved exposure, Ellen was also experiencing textbook symptoms of active Lyme infection. However, the results of these specific tests and presentation of symptoms is not currently sufficient under Canada’s health system to warrant a diagnosis for Lyme disease. Unfortunately, Canada is playing catch-up on Lyme and Canadian doctors have not received appropriate training in the identification, and/or treatment of Lyme disease. As a result, it’s estimated that only 3-4% of Lyme disease cases are detected in Canada and most suffering from Lyme disease don’t get the treatment they need.

https://www.cbc.ca/news/canada/new-brunswick/lyme-disease-under-detected-1.4869944

Following the sudden onset of her symptoms, Ellen was given a variety of medical tests through public health care in New Brunswick for which no diagnosis was determined. Ellen took it upon herself to further seek possible causes for her ongoing symptoms and found a private specialist in Moncton who advised her to complete additional testing including tests for mold and a more powerful test for the detection of Lyme disease offered at state-of-the-art laboratories in California and Germany.

As a result, Ellen was forced to seek medical treatment from a Lyme-literate doctor in the United States who now treats over one hundred Lyme patients from the Maritimes. This doctor has helped many Canadian Lyme disease sufferers. Based on Ellen’s history of symptoms, the American specialist determined that she had likely contracted Lyme disease around 2015.

Ellen was also diagnosed with toxic black mold illness which can also cause a suite of serious health problems, many of which are similar to those caused by Lyme disease. In combination, bacterial infections along with toxic black mold illness exacerbated Ellen’s physical and mental health and further complicated the treatment process.

The treatment plan for Ellen is expected to be long, arduous, and extremely expensive. It includes a variety of treatments, pharmaceuticals, supplements, and therapies. Ellen will be monitored throughout treatment and her regime will be continuously modified based on her progress. Unfortunately, there is no magic pill for the treatment of Lyme disease at this time.

To further complicate matters, Ellen cannot rely on Canada’s health care system to support her treatment, and will be joining a large group of Canadians infected with Lyme disease who spend tens of thousands of dollars seeking treatment in the United States. Ellen currently has treatment-related, out-of-pocket expenses that include:

•   Ongoing travel and associated costs of appointments with a Lyme-literate specialist in the United States, costing approximately $1000/visit.
•   Ongoing medications and treatments costing over $800/month.
•   Over $25,000 spent on appointments, testing, travel, medications and therapies since becoming ill with an outstanding balance of over $15,000.

So far, the treatment process has been physically, mentally, and financially exhausting for Ellen and we’re asking for your support to help her through this difficult time. Ellen has enhanced the lives of countless individuals through her friendship, positive attitude and philanthropic nature. Any donation, however small, would be a tremendous help. All collected funds will go directly toward her urgent medical care.

Thanks so much for taking the time to read about Ellen’s journey and the future challenges she now faces. Please feel free to share her story on any and all social media.

Unfortunately, you may have heard that there is some controversy relating to the existence of persistent or chronic Lyme disease. This phenomenon is reminiscent of HIV denialists in the early 1990s who believed that HIV was not the cause of AIDs and, therefore, shouldn’t be studied further. Rest assured that the most recent scientific literature on the subject has shown that live borrelia bacteria (which causes Lyme disease) persist following the recommended antibiotic treatment in Canada in patients experiencing the symptoms of chronic Lyme disease (see below articles). The Canadian medical community is, unfortunately, playing catch-up with new discoveries in this field and it’s anticipated that views will change in time following further study.

https://www.mdpi.com/2227-9032/6/2/33

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6136917/