Flawed testing leaves Husband & Father with Lyme
Donation protected
To those who know Louis or have been impacted by rare medical conditions:
I hope after reading my letter, you can see the urgency I have in helping my husband, two sons, and several vulnerable Canadians who are experiencing the same issues with regard to Lyme Disease. On June 30th, 2020, our lives changed when Louis suddenly became disoriented and collapsed in an apparent vertigo attack. Louis would be misdiagnosed multiple times before reaching a final diagnosis of Lyme Disease.
My name is Rachel Themeles. I’m 31 years old, married, and a mother of two lovely boys aged 5 and 2. Louis's immediate family and I are reaching out to you for support to consider a social media share and/or small monetary donation to support Lyme disease treatment and awareness so that we can get Louis and several other vulnerable people healthy in Canada.
For many who know Louis, he's the one to offer help. Whether it would be to his students, friends, family members, or someone he had just met, Louis put himself second because it's who he is as a person. It's the reason why I built a life with him. I'm writing this public plea because I know he's not one to ask for help but wants to help others. However, at this time, the urgency is now with our family being left with no other medical alternative but to relocate for emergency treatment in Vancouver, British Columbia. We need your help.
My husband has always been selfless, put others first, and continues to live on his own accord despite his gradual physical deterioration. My husband Louis is a secondary teacher and head coach in the Mount Hamilton Youth Soccer Association and is still trying to be a societal contributor.
I hope you may consider a donation, as Louis has fallen between the cracks of our healthcare system. Ontario's Lyme Disease testing is infrastructurally outdated, and decades behind other Western nations such as the United States and Germany. In fact, our current Provincial Public Health Director, Kieran Moore, has also written various articles on Global News in 2017 about how our Lyme Disease testing is picking up only a fraction of those truly infected and suffering from acute and chronic Lyme Disease, as it has become an endemic disease in Ontario. Kieran Moore - Public Health Flawed Testing. Kieran Moore - Lyme Disease Tests Missed
Similarly, in August 2022, Pfizer recently approved the final stage trial for Lyme Disease vaccinations due to its silent and debilitating impact on tens to hundreds of thousands of Canadians and Americans annually. Nikki Kent, on CTV News is a prime example of someone who walked through Louis' footsteps based on an outdated and flawed testing system. Nikki Kent Undiagnosed Lyme from Flawed Testing.
URL: https://toronto.ctvnews.ca/canadian-has-brain-of-70-year-old-after-flawed-test-let-disease-go-undiagnosed-for-years-1.4847954
Louis loves the outdoors, and he, unfortunately, had a past history of tick bite, (he thought nothing of it), which we later learned was connected to his current and rapid regression. In Ontario, Louis tested negative for Lyme Disease, but he tested positive for Lyme Disease in the United States. Due to outdated Lyme testing criteria and methedology, OHIP by default will not treat him because Ontario's current testing system isn't sensitive, tests only a few strains, and reflects recent tick exposure, limiting the time window for positive test results.
In other words, false negatives are more prevalent than positive test results, unnecessarily leading to situations such as Louis' or several thousands of Canadians. Personally speaking, being employed by a local hospital, I'm witnessing a system that isn't functioning the way it is meant to, and as a result, it is negatively impacting people with Lyme Disease and other rare and complex medical conditions/disorders.
Lyme impacts each person individually different, which makes it a difficult diagnosis to make. In Louis' case, the bacteria, Borrelia Burgdoferi needs collagen or fascia (the layer between the muscle and dermis/epidermis) to survive and continue its life cycle. As a result of its host infection, it is systemically breaking down his body's collagen/fascia and causing structural/visible changes to his connective tissues. In addition, his nervous symptomology includes widespread pain, vertigo, collagen/connective tissue changes, abrupt blackouts, palpitations, electric shock pains, insomnia, twitches, tremors, numbness, and slurring of speech.
Two weeks ago, Louis was diagnosed with Lyme Disease based on multiple test results, including a positive serological test for the bacteria, Borrelia Burgdoferi. In addition, he completed a Brain MRI, Tissue Biopsy, ENG, serological tests, and clinical exams, pieced together by several specialists in Canada and the U.S. to confirm the diagnosis of Lyme Disease.
Over ten physicians and specialists have documented the physical/clinical and objective abnormal test findings of Louis’ physical deterioration, yet the “buck” keeps getting passed to another doctor, despite their recent unilateral agreement that he has a progressive deteriorative disease. On August 7th, 2022, we landed in Vancouver, British Columbia to receive an intake with Lyme Disease Specialists at Yaletown Integrative Institute.
Test Results and Lyme Disease Diagnosis
Specifically, Louis had multiple abnormal test results, pieced together by Canadian Lyme Disease Specialists in Burlington, Ontario and Vancouver, British Columbia, with a conclusive diagnosis of Lyme Disease. Specifically, his December 1st Brain MRI revealed Periventricular White Matter Changes; 1 in a 100 – similar to that of a 70-year-old (whereas he was only 33 when this initially happened). On March 11th, 2021, an ENG revealed an Abnormal High VOR Gain in Canada, with no explanation, and was later translated by a specialist in the U.S. that his (eyes were moving faster than normal calibrated motion due to connective tissue changes caused by Lyme Disease. On May 23rd, 2022, Louis was told he had a moderate heart valve leak and was given no medical direction. On April 12th, 2022, and again on July 23rd, 2022, Louis was diagnosed with an unspecified collagen/soft tissue disorder of the orbital regions, which are systemic in all areas of his body. Similarly, on June 1st, 2022, Louis was diagnosed with an unspecified connective tissue disorder by the University of Buffalo and Neuro-Surgery, (UBNS), and referred for ‘infectious disease manifesting as autoimmune’. On June 16th, a tissue biopsy (Pathology Report) diagnosed Louis with ‘Fibrosis and mononuclear cell infiltrate,’ which translated that his body is under systemic attack, 'similar to that of an autoimmune disease,' and causing widespread tissue damage. On July 16th, 2022, specialists of the MAYO Clinic also reviewed Louis medical documents and wanted him on two occasions to schedule an intake in Jacksonville, Florida, as the institution suspected an infectious disease based on his submitted medical documents/test results. Finally, a Lyme Specialist in Burlington, Ontario decided to test him for Lyme Disease. The results for Lyme Disease was positive Immunofluorescence Assay, (IFA) result with a titer of greater than 80, along with a number of positive bands for chronic Lyme Disease. He was diagnosed with Lyme Disease, and due to his two-year delay, flawed testing and lack of treatment options available in Ontario, he was referred to treatment facilities in either British Columbia, Arizona, California, or Florida for immediate IV and oral antibiotics, along with immunomodulators.
Below are some medical excerpts, which timelines Louis' Lyme Disease Diagnosis. Physician names are not shared as to protect privacy.
Despite Louis' two-year decline, his attitude hasn't changed, and we're confident that his disciplined and commitment-like qualities are what's needed to take on Lyme Disease.
Admittingly, Lyme Disease has taken a toll on Louis as an individual. He has myself and two young children, aged 2 and 5, who need their dad and husband to be healthy. However, he can’t be at his physical best without the appropriate resources to fight this systemic disease. Much like people need radiation or chemotherapy to fight cancer, oral / IV antibiotics and immunomodulators can only cure chronic infections. Lyme disease is systematically changing his life, and I believe with your help, along with other community resources, he, along with thousands of Canadians, can be better equipped to battle this endemic disease.
We all have a purpose in life; he became a teacher to help others and to give back to the community. That purpose has been partially taken away from him. In fact, despite his deteriorating health, he still volunteered to head coach his son’s soccer team for MHYSA because he understands the importance of community and wants his kids to have a positive experience. He also continues to teach part-time because he refuses to let this disease take over his life, and he enjoys helping others. I’m pleading for your help, so he can get back to what he does best, being a great parent, husband, and contributor to society. If there is any way for Louis to get some exposure, we can have a fighting chance.
The Treatment Plan
We had to abruptly temporarily relocate our family to Vancouver to a Lyme Disease Specialist. Doctors at Yaletown Integrative Medicine are treating Louis immediately with oral and Intravenous antibiotics, immunomodulating medications, and other medicines for an estimated six months (pending prognostic results).
We will use donation funding to urgently support Louis in the following ways:
Routine Intravenous, I.V. antibiotics administration (100% not covered)
Antibiotics Medication fees (40% not covered)
Immunnomudaltor Medication (100% not covered)
Transportation / Flights (100% not covered)
Housing Displacement (100% not covered)
All tax deductions/refunds will be posted via social media/Instagram, and will be re-donated/pooled back into the Avril Lavigne Foundation, (FIGHT LYME).
Warmest regards,
Themeles Family
Organizer
Rachel Themeles
Organizer
Hamilton, ON
