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Hello Dear Ones,
Many of you know my story already but for those of you who don't .... it is a long and windy road. My name is Kylie - I am 44 years old - a lover of the colour pink, animals, beauty, the sun and all the layers of love. I am a wife, sister, daughter, dog-mom, friend, listener, traveller, and lover of the Great Mystery. I am still here because of LOVE, even after 25+ years of navigating chronic illness and many surgeries, all the ways love has found me, has helped me to keep going. Thank you for reading my story....
It starts back in 1999, when I was travelling in New Zealand and Australia. I was bitten by something (likely a tic) and soon after developed a rash, flu-like symptoms and eventually multiple bouts of strep throat. When I returned to Canada all the tests were done and negative so they removed my tonsils to see if that would help. My symptoms seemed to quiet down, and I got engaged to Johnny Judge and moved to Edmonton to finish my Education degree. In 2002, I had my wisdom teeth taken out and six weeks later had jaw pain and trouble opening my mouth.
This led to several surgeries to rebuild the joints and jaw, including bone graphs and was a hugely traumatic experience that I would not have managed without the incredible support we received.
During these years of being distracted by my jaw pain, I started to have sore swollen joints appear and one by one, and they let me know that something systemic was very wrong. This began another new chapter of being diagnosed with zero-negative poly arthritis, and trying multiple different medications to try and find relief. For the next 12 years, I went from a healthy vibrant 18 year old to a very sick, immobile young woman. I tried everything I could, saw countless practitioners and nothing seemed to help. We took on health debt to try various treatments and to do our best find what was really going on. Every test came back negative.... we had no answers and I felt my life and all my dreams slipping away. Dreams of having a family, being able to travel and explore the world faded to become just making it through the day. It felt like ground-hog day for years and it was a daily challenge to get out of bed.
In 2012, I was introduced to a new practitioner who told me about Lyme Disease and my blood was sent to the USA. It came back positive for Lyme and Co-Infections and another HUGE new journey began. We dove deep into learning about Lyme and various treatments - as there is no one-size fits all approach to Lyme. I worked with several different practitioners from traditional medicine to herbalists, naturopaths and unconventional but powerful healing medicines. I slowly started to improve and in 2014 I felt well-enough to travel to Central /South America for an extended period of time. We had discovered in 2007 that my symptoms improved drastically in Central America, so we decided to see how I did over a year-long period. With a huge back-pack full of medicine we headed out and I hoped for a miracle. However in August of that year, in rural Bolivia, I found over 300 nymph tics in my legs after a walk in the forest. I had a huge relapse and we found ourselves back at square one.
I made it home to Canada very unwell and began again to search for support - I tried IV therapy, more testing, worked with a health coach and eventually learned the connection between Lyme and Mold. I worked with a Shoemaker trained Naturopathic Doctor from the USA who through rigorous testing, eventually diagnosed me with a condition called CIRS - Chronic Inflammatory Response Syndrome. Here is a link to read more about it:
I started the very expensive treatment protocol, driving back and forth to the USA. And meanwhile we received some heartbreaking news regarding a very, very special little human in our life. Everything changed again and we shifted gears to be with our dear friends and move through the most painful experience of our lives. We spent the next 6 months in and out of the Children's Hospital, trying to survive the pain of every day, while this very special little being fought for her life. Many of you know her story, I am not going to share it here, but her life and her death changed all of ours forever. It shattered every aspect of my life and I found myself beginning again in so many ways.
I completed the CIRS treatment at the time, and was deep on the grief road - following the bread crumbs and taking life one breath at the time. The next few years were a blur but I miraculously found some wellness though many of the people and places that I ended up in. I slowly re-entered my life and began a new chapter again; I went back to school and started taking some more steps towards re-building my life and then in 2019 I started to re-lapse again.
For the past 5 years, I have again tried many things ...but couldn't figure out why the joint pain and immobility was returning. The CIRS treatment had held for a few years but then something had shifted. We couldn't consider driving back to the USA for treatment so did our best to manage things here with all of the amazing practitioners we had met along the way. I had bilateral TMJ replacement surgery for my jaw in 2022, which left my face partially paralyzed for 4 months and was a very slow intensive recovery. Following that, I had to have a hysterectomy due to hormones malfunctioning and then from there have been working to slowly rebuild my life again. However 2024 was a very difficult year and my joint pain and swelling was steadily worsening.... and I started to wonder.....
What other approaches are there to healing ? What stone has been left unturned ?
This lead to my feeling some clarity around trying an approach that we had not yet tried - an Ayurvedic approach. Following yet another jaw surgery to remove some problematic screws from my jaw in Sept. 2024 - I boarded a plane to India in October to attend an Ayurvedic Hospital for 6 weeks. Unfortunately after having to leave the original location in Delhi, I unknowingly ended up staying in a room with mold for 6 weeks. I became very ill and it took me a long time to figure out what was happening because it showed up as multiple infections in my ear, jaw and sinus. I required several rounds of anti-biotics and barely made it back to Canada.
The silver lining of the trip to India and the mold exposure, is that it re-oriented me back to CIRS and to the treatment that originally helped me to make a recovery. I started searching to see what had changed since 2015 and the good news was that there is a CIRS trained practitioner in Cochrane, Alberta! There are only 15-20 of them in the world and now one in my home-town. I met with them at they clinic and shared my long-story and one of the practitioners Mark said to me - yup sounds like a CIRS journey ! The other thing is that in the last 10 years they have learned a lot more about CIRS, including some new pieces that affect recovery, which are relevant to me and my genetics!
I have just received back all of my genetic testing and have been officially diagnosed with CIRS - and the good news is that the testing provides a solid map for treatment. There is some new clarity now around why I likely relapsed in 2019 and that will be a part of my treatment this time around. The support through the Flourish Clinic in Cochrane has been just incredible so far and I know I am in really good hands. Here is a link to their site if you would like to read more: https://fatiguetoflourish.com/about/
The most difficult part here is that the cost of the treatment alone, is $18,000 over a 12 month period. It is all-inclusive to the treatment that they provide and testing needed. However additional costs like home remediation, IV support, and collaborative treatments are not covered. This is leaving us with a very daunting financial future, and currently we are not sure how we are going to make it work. We have already taken on a huge amount of health debt along the way, especially in this past year and we need some help if we are going to be able to make this happen.
I was sharing this with a dear friend and she said - let's put it out the community and see what happens! SO ..... here I am friends, family and world-wide community. I could really really use your help right now, to make this treatment accessible so that I can start to re-build again. If you have made it to the end of this writing, thank you for reading my story.
Any support you can offer would be humbly and gratefully received ... I have a huge heart for being of service in this world and I need to be well in order to do so. Thank you from the bottom of my heart for your care, your friendship, your love and any financial support you feel moved to contribute. Every little bit will help us so much.
I truly wouldn't still be here if it wasn't for the incredible love and care, support and cheering of my family, friends, practitioners and so many of you .... THANK YOU WITH ALL OF MY HEART <3
Love in the widest, deepest ways ..... xo Kylie
Organizer
Kylie Judge
Organizer
Calgary, AB