Help Carmel fight late-stage Lyme disease
Carmel has been sick for over 15 years and is now in the late stage of Lyme disease. She is getting progressively worse. We are asking for help with treatment costs so that she can regain some quality of life. No donation is too small. Here is her story:
I can't remember the last time I felt 'normal'. Not sick. Not in pain. Not struggling. I have had evolving symptoms for the past 15 years. I was treated as a mental health patient for most of that time. I did all the things: counselling/exercise/dietary changes/supplements/etc but I didn’t get better. Doctors said I was “just depressed”, and when the psych meds didn't help they said I was just resistant. I felt so weak and exhausted. I couldn't read or focus or remember things. I went from honour roll student to failing my University courses. I managed to work part-time for a while but eventually I couldn’t do that either. Friends started to disappear because they didn't understand. It felt like my life was falling apart.
I got to a level of desperation that resulted in a suicide attempt and was taken to hospital in critical condition. After that I decided I was done with psychiatric meds (which obviously weren't helping) and began searching for answers elsewhere. I had this sense that something wasn’t right inside my body, but I didn't know what it was.
I know now that I have Neuroborreliosis, a neurological manifestation of Lyme disease, and that’s what caused my early symptoms.
Lyme Disease
Lyme is a great imitator. It can look like many other diseases (Multiple Sclerosis, Fibromyalgia, Bipolar Disorder - just to name a few) which is what makes it so difficult to diagnose. Lyme is an infectious disease spread through the bite of infected ticks. Most humans are infected through the bite of immature ticks called nymphs which are the size of a poppy seed. Adult ticks can also spread Lyme.
Ticks can carry many other lesser known diseases as well. Some people get a tell tale rash around the bite called a bullseye, but ticks are very small and their bites are usually painless, so you may not know that you have been bitten. Early detection and treatment are key in stopping the infection from spreading. It’s scary to think that something so small could change your life in such a big way.
If you don’t know me well, I’m 37 years old and I live in Calgary Alberta. I grew up in Manitoba where I believe I contracted Lyme Disease and 3 other tick-borne infections as a teenager.
I was not properly diagnosed until January 2018, when I paid for testing through a private accredited lab in the United States.
The longer these infections go undetected the more damage they do, and the harder they become to treat. At this stage I am severely ill and housebound. I have experienced many complications from Lyme, including needing major surgery 5 years ago which seemed to accelerate the disease. I started developing new symptoms and the ones I already had got worse; Episodes of rage, panic and dissociation. Dizziness and heart palpitations. Cognitive and sensory impairment (I can no longer read books or watch movies). Muscle spasms and joint dislocations. An increasing number of food allergies and chemical sensitivities, which has taken away my ability to spend time in public places. I haven’t been home to see my family or friends in over 5 years because I can’t travel. I have lost my independence, and feel like a prisoner in my own body.
Treatment
After getting my test results I was referred to a Lyme specialist at a hospital in Calgary. He is the only Lyme-literate doctor that works within public health care. I was informed that the waitlist is over 320 people long, and that my expected time to be seen is some time in 2023 or later. I can’t possibly wait that long, which hasn’t left me with many options...
A lot of people with Lyme travel outside Canada to get the treatment they need. There is a private hospital in Germany that has an intensive 6 week treatment program for Lyme disease. Whole body Hyperthermia (induced fever done under sedation) is used to kill the bacteria. There is no comparable treatment in Canada. This is something we would like to consider trying in the future, if I become well enough to travel again.
The plan in the meantime is to work with an LLND (Lyme literate Naturopathic doctor). My body is very weak and dysfunctional, and that is something an LLND can assist with. Things like healing the digestive system and making sure internal organs are functioning properly are important parts of Lyme treatment, and often need to be addressed before antibiotics can be safely started.
Lyme still isn’t recognized as a chronic illness by most doctors here in Canada, but that’s slowly changing as the number of cases increases. Late stage Lyme disease requires *years* of ongoing treatment. I will need IV antibiotics which will have to be administered at a private clinic. Unfortunately, our insurance won’t cover either the IV medication or the clinic visits. Because of this, the financial burden is very heavy. My husband and I are trying to survive on a single income and it’s really hard with the added expense of clinic fees and high cost medications to treat this chronic illness. We are worried about the future and we need your help on this journey.
If you are able to give - any amount, small or large - we would be so grateful. And if you can’t help financially, even something as simple as sharing this page on your social network could make all the difference in the world to us. This disease has taken a part of me, and I desperately want my life back.
Thank you,
Carmel + Justin
For those that would like to learn more about Lyme disease, I have included a link to ILADS below. They are a nonprofit medical society dedicated to the diagnosis and appropriate treatment of Lyme disease. I’ve also included a link for the hospital in Germany that I’d like to go to in the future.
International Lyme and Associated Diseases Society
https://www.ilads.org
St. George Hospital, Bad Aibling Germany
https://www.klinik-st-georg.de/en/klinik-st-georg/lyme-specialized-center/
