I believe my Lyme journey started over 40 yrs ago...while on family vacation in New Jersey, I was 9. I received multiple bites, On a walk thru they forest. I remember knocking the body off one and the head remained for many hrs, until I was in the bath that night. I remember my brother teasing me about it living in me. Brothers!
It was 1975..Lyme didn't even have a name in North America.
We returned home without incident, but soon all but my mother got very very sick. When we got back to Ottawa, Canada, we were all told it was was told that my symptoms (fatigue, GI issues, IBS symptoms were all from Coxsacki virus B that was going around. Everyone else in my family seemed fine within a week or two but I spent 2 months in my dark quiet bedroom, I was so light and sound sensitive I had blinds pulled during the day and all I did was sleep.
I have been tired every since....at first they thought I was looking for attention, my emotional sensitivity lead to being diagnosed with depression by 11 or 12. I also had chronic gastritis, and IBS symptomology as well. My knees started dislocating and I was in a cast or in physio for a couple of years. I had started riding horseback at 5 and loved everything about it. They doctors felt my knee problems were from English riding and soon I wasn't able to ride anymore unless it was western and not for very long at a time. What made me happiest wasn't an option anymore. I was depressed. I was constantly teased at school, because I was always sick or disabled in some capacity.
I felt like I was crazy and that no one understood me. I was always nauseated and I didn't want to eat most of the time...at 13, I became an active bulimic. Purging came easy, I always felt like I was going to throw up anyways. I had been using laxative suppositories because my IBS made me very constipated, so it was a natural progression.
My behaviour and emotional instability made me a force to be reckoned with, and I became too volatile. I became a ward of the court and moved into a foster care situation. That didn't last long. An incident ended with me running away and I continued to run for the next few years. I didn't know where I was running to, just that I needed to get away from my life and how I felt inside my own skin. I lived on the streets for the next few years, lost and alone.
So next was my descent into hell using and abusing amphetamine for 5 yrs. I wasn't tired when I was high. I learned to self medicate and finally had energy to live. I don't know how I survived the streets, but many people had me dead and buried on a daily basis. I know I didn't do much to save myself. Most of the time I felt like death would be a step up. I had surrounded myself with other users and abusers and was victimized multiple times because of it. It all came to a sudden stop when I was arrested. The courts offered me addictions recovery as an option to jail. I knew certainly didn't belong in jail, I didn't hurt others, I hurt me. I was already imprisoned in my own body. So I got sober and clean just before my 19th birthday.
Cleaning up and coming off drugs brought stress and a bout of shingles (1985)....I was 19...another 2 months of agony.
For the following 20+ yrs anytime I would go to the doctor for pain in my knees and hips or fatigue,confusion, dizziness, twitchy legs,headaches, they would blame it on hormones and depression. It was all in my head, and if they could find the right medication, I would be okay. They were wrong. I attempted suicide twice and I was hospitalized after each. My psychiatrist at the time tried me on 4 different SSRIs within 9 months. The side effects of the medication left me 20 lbs underweight, and struggling for my life again.
Throughout these years I managed to attend and graduate from college. Hoping to be able to help kids was the one thing that motivated me. I wanted to help children, I wanted to be that person I so desperately needed when I was younger.
I meet my sons father when I was 33 and after another evaluation it was decided that I would not conceive naturally. So we started IVF (in Vitro fertilization). Surprisingly our first attempt was very successful, and I was blessed with twins., however I lost one at 8 weeks. I carried my second, my son to full term but couldn't deliver naturally and ended up with a c-section. During my high risk pregnancy I was very sick, losing weight at the beginning, unable to keep anything down, it turned out my gallbladder bile duct was blocked by gall stones and my gall bladder was removed within a 6 weeks after giving birth. Another surgery, another invasion to my body. I couldn't seem to recover and was so exhausted I couldn't get out of bed. Because of my history of depression I was diagnosed with post partum and put on antidepressants again. A couple of months after fighting with my doctor that something else was wrong, he ran bloodwork that showed insulin resistance and hypothyroidism.
So in 2001 I was put on metformin and synthroid and told to get a new doctor because I was not compliant enough for the doctor to work with.
My next physician was a palliative care specialist, who worked as part of the teaching hospital (I live in the city with one of Canada's best known medical programs) At one appt I talked to his resident about the possibility of West Nile virus. I had horses and knew about the concern....it came back 1:320 speckled and homogenized and I was then diagnosed with SLE. I was put on plaquenil for 2.5 yrs and had a bit of relief from pain. I was then sent to sleep clinic that revealed restless leg as well. Trips to rheumatologists out of town and steroid injection in my hips was the next step. The pain was incredible, so they put me on OxyContin for pain for 2.5 yrs. I became horribly dependant and aggressive and felt like I had lost my soul. I had a beautiful baby boy finally and all I wanted to to be pain free, after I had a lyme rage at the pharmacy for not having my drugs I realized it was time to stop, so without medical approval, I went cold turkey and detoxed myself off them.
Because they made me sick to my stomach and I couldn't eat I started using marijuana to give me an appetite. When I came off the Oxy I used it instead to deal with pain and ever present depression.
Other diagnoses I received along the way were chronic sinusitis, interstitial cystitis, restless leg, depression, vestibular neuritis, IBS, PTSD, SLE, that doctor retired (2007). My new one decided I had fibromyalgia, CFS and a bad attitude :). My next doctor was one of the residents who I had worked well with...I've been to see rheumatologists, physiologists, psychiatrists, neurologists, oncologists, ob/gyn, fertility specialists, ENT, internalists, and they all treated me like I was emotional unstable and as a difficult patient.
I had one doctor call a pain clinic to tell them I was difficult to work with(2011). My new doctor started me on neurobiofeedback, gabapentin and nabilone. Social anxiety, emotional instability, breaking down crying for no reason, angry outbursts, short and long term memory issues became worse. Another Dr took me off gabapentin and switched me to lyrica and I crashed October 2013. I was horribly sick over Xmas and lost 20 lbs.
I did have a great job working with special need students part time with the school board, and loved my job, but I couldn't stand for long, or bend over without getting dizzy and needing to throw up, so I stopped working. (I haven t worked for 2 whole yrs now). I was after repeated begging was referred to an internalist who was supposed to be like our version of Dr House. I welcomed someone who would look at all of me. He ran tests and suggested after wards that I need to walk for 45 mins a day to feel better. I couldn't even walk for 5 mins without having to sit and rest...another doctor who didn't see or hear me.
I got so feed up and tired of modern medicine I decided to quit. I was done. No one seemed to think there was anything but my attitude that needed changing. I was quitting. I guess my folks realized the seriousness and helped me see a homeopath in town. She had helped my dad with his migraines and who is also a physician in in Germany. She asked me some questions and after listening to my history she asked if I had ever been bite by a tick. I knew I had years before but didn't know where she was going. She gave me the Horowitz questionnaire and hey I passed...lol. I took that in hand and went for a blood test. Unfortunately I failed the ELisa test so I couldn't be treated for anything in Canada. I was refered to an LLMD in the states and ended up travelling 4 hrs to see my doctor.
The recovery process has been difficult, I was so weak and reacted so strongly against the antibiotics that my progress was very slow, it took me weeks to get to therapeutic doses instead of days. By my forth month of oral abx, and I had much less pain in my legs, but neurolyme symptoms got worse...I slowly came out of a deep fog, although my memories from the first summer treating are very cloudy...I continued to treat with a variety of antibiotics, anti malarials, herbals, homeopathics, acupuncture, biofeedback and supplements until the summer of 2015. I developed tendonitis symptoms in both my heels and elbow and after some research learned of how long term antibiotic use can cause it. I also ran out of money. The for one year of treatment I spent $13,000. I have since come off all pharmaceuticals including synthroid for my thyroid. It never worked and I have since switched to Cytomel or T3 and finally have a normal body temperature for the first time in years.
My journey is now about healing not killing bugs. It's time to focus on the positive and keep my eyes forward, the only time we need to look back is to see how far we have come. I can't change my past, anger doesn't help my healing, it keeps me stuck in yesterday. I want a better tomorrow, so I need to let go and move on and not drag all the pain from the past into today.
I have learned about so many things I didn't know about in the last few yrs. I took my health and the health of my son, into my own hands and searched for answers that made sense to me. I know the benefits of having a well balanced healthy diet consisting of mostly organic foods, sugar free, no processed meats, dairy, or pre cooked packaged foods. I have learned to trust my own gut, and to think very hard about what I expose myself to. That includes, people, places and things. If I do not treat myself better, no one else will either. My journey had to begin within.
It's been a horribly long journey to get to this point, and I have since found out many more things, like the congenital transmission of the Borrelia bacteria to my son. This website was created to help others learn from my journey and to encourage everyone to gain knowledge. Because despite what they say "What you don't know...will hurt you and those who you love the most.