I thought I was just burnt out. I thought I was working too hard, pushing myself too hard. I thought it was just stress.
I didn’t go from working out 7 days a week, working 3 jobs, happy, successful business person to almost bedridden overnight. This is not a story of someone having a stroke or a heart attack and in an instant, being disabled. This is a story of a long, ongoing, undiagnosed and misdiagnosed illness that would have left me bed-ridden and dying at 25 years old if we hadn’t figured out, by fluke, what was ailing me, with no help at all from our medical system.
I have my suspicions that I may have contracted this disease as a child, and that it may have contributed to my mental illnesses, endometriosis, IBS, and other ailments I had as a teen, however, for the sake of accuracy and keeping this short I will stick to what I know for sure was Lyme in disguise.
By summer of 2015 the following ailments had begun to surface:
- Numbness in fingers and toes (Reynaud’s?)
- Bloating and severe cramping in pelvic area
- Found 3 minor disc bulges
- General feeling of over-whelm in my body
- Sudden severe sensitivity to noise
By winter of 2015 I had the following:
- Weakness in hands, wrists, legs, ankles and feet, both sides
- Hair thinning from the scalp
- Heart racing or fluttering
- Trouble concentrating
- Electric shock nerve pain
- Feeling like all my insides are vibrating against my skin
- Feeling like my eyes are vibrating
- Feeling like my brain is vibrating
- Involuntary movements/muscle spasms
- Muscle pain
- Joint pain
- Pain all over/migrating
- Worse vision
- Eye pain
- Confusion/forgetfulness/memory loss
- Unsteady Ness
- Tingling /pins and needles
- Muscle fatigue
- Intense night sweats
- Cold sweats
By summer 2016 I added the following to my ever-growing list of symptoms:
- Dots in my sight
- Stomach pains
- Disrupted sleep
- Random bruising
- Heart palpitations
- Jaw stiffness and pain
- Tingling pressure sensations in my forehead
- Eye pain
- Antsiness in my muscles
- Extreme pain upper abdomen
- Weak legs
- August 6th collapsed
- Feels like my eyes aren’t processing properly. For example when a train goes by I can’t look because it feels very uncomfortable and intrusive. Same with any rapid movement or even reading or shadows as I’m driving.
- Collapsed again
Throughout this process of doctor appointment after doctor appointment I was given the following answers:
- Chronic Fatigue Syndrome
- Central Sensitivity Syndrome
- Somatoform disorder
- Central nervous system issues caused by disc bulges
And most recently I had an MRI that showed a possible lesion like MS. (But I already know that Lyme causes these lesions as well.)
I had the Canadian Lyme test done. No one told me that it only picks up approx. 30% of cases or that it doesn’t include the most common strain of Lyme. I had no idea that our doctors in Canada didn’t recognize Lyme disease or that they weren’t allowed to properly treat it. I didn’t know that even if I was one of the 30% of cases that was picked up by our testing, that our doctors here would only give me a few weeks of antibiotics and then blame any persisting symptoms on “Post Lyme Treatment Syndrome” when really they would be caused by the bacteria still floating around my body, corkscrewing their way into my tissues, bones, organs and brain.
I had no idea that our Canadian medical system would sit back and watch me as I eventually would become bedridden and die, before recognizing that I was suffering from advanced Lyme disease.
There were days when I thought for sure I was getting Alzheimer’s, or MS, or Parkinson’s. Even physiotherapists told me that it sounded like MS. For months, I felt like I was losing my mind. I knew that the symptoms were real. I knew in my gut that something was severely wrong inside of my body, even when no one else believed me.
One day my co-worker told me, “Denise, I know you don’t believe its Lyme disease but you have to talk to my client. She has Lyme disease and what you’re going through sounds exactly like what she went through.” So I reached out to her and she explained to me why the medical system wasn’t finding what was wrong with me, and how the same thing happened to her. She added me to an online support group where I shared my story and my symptoms and I could not believe the number of responses saying, “yupp sounds like lyme,” and “welcome to the club!”. Thankfully they also told me what LLND (lyme-literate naturopathic doctor) to go see, as well as what LLND and LLMD meant! This group of 2000+ Canadians with Lyme have supported me through every step, answering questions and pointing me in the right direction. Without them and my LLND, I would be severely disabled by now.
I had my first visit with my LLND, Dr. C, in late May 2016 and started treatment in August 2016. I have now been actively treating for 9 months, and for the first time I can finally say that I am seeing progress. Treatment often made me sicker than ever – nausea, vomiting, migraines, psychosis, suicidal ideation, panic attacks, anxiety, depression, uncontrollable sobbing for no reason, severe pain and more. Most of what makes us so ill during treatment is referred to as a herxheimer reaction. This is when the bacteria in your body die, and as a result turn into toxins which your body must process and get rid of. When your body is full of so much toxins that it cannot process it all, it causes a flare up of symptoms – a herx. Between herxing and medication side-effects (I’m currently on between 250-300 pills per week) treatment is bound to make you sicker than ever.
If we had caught this disease early enough I could have been treated early with a couple months of antibiotics and been cured forever. Instead, because it was left misdiagnosed for so long, my hope is to reach remission and to stay there for as long as possible while living a normal life. I still have a long road ahead of me before remission, but at least I now know that I am on the right path.
Because doctors in this country are not properly educated on this complex disease, which mimics over 300 other diseases, the majority of people go misdiagnosed and may suffer their whole lives when it could be easily cured if caught early. For those who do eventually discover that Lyme is behind their lack of wellness, they are forced into very expensive life-or-death treatment that is not covered under medical. I’ve watched friends have to re-mortgage or sell their homes, host fundraisers or gofundme pages, partner’s getting second or third jobs, all so that they can access the healthcare that they need. I would never be able to put myself through my own treatment if it weren’t for my parents help, and even with that I don’t know how long we’ll be able to keep doing this.
May is Lyme disease awareness month. My wish is for no one to have to live with this debilitating disease, that those who do can have appropriate access to healthcare the way anyone with any other disease does, and that early intervention increases so that people can be cured easily rather than suffering for a lifetime. It may be too late for me, but its not too late for you, or your family, or your children. Please spread this message and always check yourself and your children for ticks. I know several people who have contracted Lyme in their own backyard in the lower mainland – just because you don’t travel or hike does not mean that you are immune to this! Educate yourself, educate your doctors, and educate your politicians, please! The standards of care for Lyme patients in Canada needs to change!
Some other good resources for Lyme are: