A Lyme Disease Story to Inspire you
MY STORY
I was the girl who was never sick or injured as a child. I was Australian Champion and undefeated over 800m for many years from age 10. I then went to boarding school when i was 13 and while i continued to train and race, running was put on the back burner whilst i competed in numerous other team sports all at a state and national level.
In 1996 i can now say my life changed forever. I went on a school camp in north west NSW for seven days. Eight days after i returned i realised the itchy lump on my back was neither a mole or a pimple, it was a tick. It was removed by the school nurse and i thought nothing more of it. I got the worse flu i had ever had in my life but i definitely didn't get the characteristic EM rash. Not long after my glands became sore and swollen and i became extremely fatigued. Tests showed i had glandular fever and very low iron stores and an iron supplement was prescribed and rest was ordered until i recovered. I had qualified for an International Athletic Tour of the US later that year so i didn't want to stop training as i was really looking forward to traveling and competing again. I had a few weeks off and then did the best i could with my training leading up to the trip. I ran well considering my lack of preparation, picking up a few medals, but i came back exhausted and had the rest of the year off to recover. I will never know if it was that tick in country NSW that gave me Lyme Disease or even if i possibly picked something up whilst i was competing in the US, but either way my health issues started there and if only i or the doctors had known to test for Lyme Disease back then.
I continued to train and compete but never at the same level as i had previously to the glandular fever diagnosis. My right gland never went down and i often got sore throats, lost my voice, was run down easily, headaches for the first time and on and off got this weird rash on my hands and feet that i was told was a fungal infection. Doctors said it was because i had gone through puberty and my body was different now, which at the time seemed logical.
At the conclusion of 1997 i convinced my parents to let me leave boarding school and come home to train with my coach, Mr Manning, whilst completing my year 11 and 12 studies at the local high school and via correspondence. I was so excited to have the opportunity to train like i used to and get back my national title. But it didn't go to plan. I put hours of extra training and stretching in, fine tuned my diet, started visualising and did everything and more than i had ever done to get my health and fitness back. It wasn't coming as easily as it had before, i was getting niggly injuries, often felt run down and fluey. I blamed it on hormones, having gone through puberty and now carrying a little more weight than i used to as a child. I got picked in the 1998 Australia Oceania under 21 team and travelled to Tonga to compete. Although i came home with 3 silver medals i was quietly disappointed, as the times i was running were equivalent to when i was 13. After that trip my health declined and i started getting really bad cramping and stabbing pains in my calves. The more i ran the worse it got until one day i was racing school cross country and my legs gave way on me and i couldn’t stand up or feel my feet. I had a stack of tests done which came back saying i my iron levels were dangerously low and i was extremely magnesium and potassium deficient, so much so i should have been dead. I started supplementing with magnesium and potassium and eating 3-4 bananas a day as per doctors instructions but still the pain persisted. I had been taking iron on and off for a couple of years now so some questions were raised as to why my iron stores were still so low. I missed the national 800m final that year but 0.01 of a second and realised it had to be more than just a nutritional deficiency.
My mum and i travelled to Sydney in the school holidays to see all the top sports doctors and it was then i was diagnosed with compartment syndrome (where the fascia doesn't expand as the muscle does during exercise limiting blood flow in and waste products out). The options – surgery to slit the fascia or 6 months NO running and limited walking. I chose the latter, throwing myself into weekly physio and acupuncture and daily massage and stretching to try and stretch the fascia.
In April 1999 i did my first walk / jog session and slowly built the training back up. The calves felt fine but i just couldn't get fit. I could barely run the 2km warm up (as a 10 year old i used to run 8-10km with my yes closed) and the more i trained the more unfit i felt. I kept telling myself it was because i hadn't exercised for 6 months and my body was just really unfit. Then i started getting heart palpitations and then severe chest pain. My short term memory was affected which really affected my study for my HSC as by that time i was in year 12. I got sick, my glands were up, i had a dry cough that wouldn't shift and often had a sore throat and would lose my voice. I could barely get out of bed somedays, let alone run. My mum took me to the local doctor who did an ECG. Result – strongest healthiest heart he had ever seen. My mum then took me to see a cardiologist, i had every test under the sun, including an exercise ECG, angiogram, ultrasound — everything was normal. After multiple exams and tests by a plethora of doctors around the state, including a spect scan of my brain (as i was having excruciating headaches daily by this stage), it was decided it was all in my head and i was prescribed anti-depressants. My parents were beside themselves and thought maybe i should try taking the anti-depressants and see if that helped. I had rarely even taken panadol so i wasn't about to start taking some psychotropic drug as i knew it wasn't in my head. I was lucky that the only person who really truly believed i wasn't faking it or creating it in my head was my coach Mr Manning. He found a biochemist and suggested my mum take me to see him. By this stage i was sleeping up to 18 hours a day and was starting to become seriously depressed, wondering if i would ever be well again. I felt helpless and hopeless and i would often cry myself to sleep with my head under my pillow so as not to worry anyone.
The biochemist in Rutherford believed i had picked up a parasite whilst i was racing in Tonga as i had been much sicker since i had returned from there. He said my liver had a fatty build up (possibly affected by the glandular fever) and that my ATP levels were all over the shop affecting my energy. Being a biochemist he made all his on supplements and medications so to this day i could not tell you what he prescribed me but it worked! Initially i got really sick , a huge rash coming out all over my body. He said it was my liver detoxing and said i needed to have lots of water and veggie juices to support the detox pathway. Within 8 days the rash died down and my head cleared a little. Over the next few months i went from strength to strength and i had enough energy to start going to school all day again and doing some social activities. My right gland never went down and to this day is a warning to me to slow down if it gets sore. My short term memory was also never the same but i learnt ways around it by writing things down and getting good at using diaries and reminders. This biochemist that helped me is now in jail for fraud, having claimed he could cure cancer, meaning one of his patients ended up dying. Although his claims were not communicated well at his trial, i know his intensions were sound and i truly believe he saved my life at that point of time.
In 1998 i finished high school and my HSC exams and slowly got back into my training. I received a scholarship to study at ACPE (Australian College of Physical Education) to Study Sports Science and moved to sydney in early 2000 to pursue my beloved athletic career whilst also getting an education. Over the next few years i worked my way back to be ranked number 3 in Australia over 800m but my body was never the same. I had many injuries that kept setting me back, i would often get sick in my easy training week, and i would always struggle to run well if i had to travel. I was blood tested every 4 to 6 weeks to monitor my low iron levels and also had many tests such as stool tests, gastroscopes, a colonoscopy and many blood tests trying to work out why my body was either losing iron or not absorbing it. Once again multiple doctors were involved and no one could work it out so they decided low iron was ‘normal’ for me!
In 2006 i broke my navicular in half in a race after a stress fracture was misdiagnosed. I was absolutely devastated as i was in contention to be picked for the Melbourne Commonwealth Games. I was told i would never run again by the doctor if i didn't have an operation to put a screw in the bone. Whether i operated or rehabbed without an operation i wasn't going to get back in time for the Comm Games so once again i opted for the natural route. That meant having my foot in a cast and then a boot for 3 months followed by another 3 months of rehab. By this stage i had graduated from Sports Science and was studying Chiropractic part time. I decided to go back and study chiropractic full time so i could rehab my foot properly and have a masters behind me so i could pursue an exciting working career of helping others once i had finished competing. After finishing my masters of Chiropractic, getting a job, meeting the man of my dreams and starting Health Space with my now husband i never did go back to athletics.
Fast forward to 2012 both my husband and i got bitten by a tick in February. Once again we didn't think anything of it after removing it. In April we did a whirlwind trip to Vegas and LA and i returned feeling a little tired. As we were planning to start a family at the end of that year i researched and found a good holistic doctor and thought i should get some blood tests, check my iron levels and make sure i was ovulating all whilst doing a 6 month detox. I hadn't been to the doctor since i retired from athletics in 2006 so it was time! After what i thought would be some routine blood tests to give me a green light my second visit back to the doctor was both surprising and scary. My white cell count was dangerously low and there was likely something seriously wrong. Differential diagnoses that needed to be ruled out included cancer, lyme disease and HIV to name a few. My doctor, Dr Kate Norris from the start thought i had Lyme Disease and it really only because she was so thorough and dedicated that i was diagnosed with Lyme 5 months later. At the start i was in denial as i googled medical sites and the symptoms and diagnosis didn't exactly fit. As more tests came back positive such as mycoplasma pneumonia (explaining all the sore throat and dry cough symptoms over the years), EBV (epstein-barr virus), HSV1 (herpes simplex virus) a strong case was building up. All the Australian testing came back negative so i thought i was in the clear and went on a holiday to Europe for a month in July. It was while i was traveling i realised something was wrong as i was so fatigued, my hair was falling out, any scratch or sore i had would take ages to stop bleeding and heal, i became extremely constipated and had all these sores on my skin that just wouldn't heal. Once i got back i went back to see Dr. Norris and she convinced me to get the Western Blot testing sent off to Igenix labs in California. Five week later the results came back and they were positive for Lyme Disease.
I had a real struggle to come to terms with the treatment recommendation – three different types of antibiotics at very high doses indefinitely. I reached out to many doctors, friends and health professionals for advice and came to the conclusion that if i didn't do the antibiotic regime along with all the natural options it was unlikely i would get better. Once i made my decision i never looked back and i have no regrets. I was committed to everything i put my mind to and had in my head that i would be better in 3 months, and six months maximum. I convinced myself that in the scheme of things this wasn't that long! I cut out all dairy, gluten, caffeine and sugar out of my diet, purchased all organic produce, made sure all my home products (cleaning, cosmetics etc) were all certified organic, stopped aerobic exercise to give my adrenals a rest and allow my white cells a chance to recover. I took all the supplements that were recommended, started meditating everyday and i was committed to treatments such as rife, acupuncture, reiki, kinesiology, lymphatic massage and of course chiropractic. I would sometimes drive hours a day just to get these treatments. I was blessed to have so many colleagues, friends and clients to help me and it was rare that i paid for a treatment in which i was extremely grateful for.
Six months later i was so much worse, i was blacking out, extremely fatigued, had severe headaches and jaw pain, my eyesight had diminished to a blur, my hearing was super sensitive to the point that even the hum of a dryer could drive me crazy, i had a rash all over my fingers and toes that would burn like my hands were being held in a fire, my short term memory and brain fog were so bad i couldn't remember simple words like honey or my close friend’s last names, i was stressed and depressed and began to give up hope of ever getting better. I had a consultation with Dr Nicola McFadzean in which she recommended really focussing on treatment for babesia as she believed i had 90%+ of the symptoms. I also started looking into other treatment options and came across a clinic in Bali which i decided i wanted to go to. Then a friend of a friend suggested looking up Germany as there was a well established clinic there getting great results. I spoke to both clinics and realised i needed to detox before i could do either program. The next day i woke up and decided i had given the antibiotics a good go and i was done. That was it, no more antibiotics as of March 2013. The other thing i did that made a huge difference was to get a root canal tooth removed that i believed was harboring infection. All the different treatments i did are all outlined in detail in my book fthat is coming out for you -including practitioner registered, to help you find someone in your area. I ended up going to the St Georg Klinik in Bad Aibling, Germany. In hindsight i wished i had gone as soon as i was diagnosed. I truly believe this is what help me turn the corner to full health again. Details about the clinic and the treatment are also included in my book which is coming out soon.
I tell you my story not because it is so different from many other lyme disease sufferers but because i want to inspire you to listen to your heart and know there is hope. It is my hope that i can be the one person who makes a difference to you by providing up to date and specific information about lyme disease and its treatment options so you can get back to being the best version of yourself, just like i am. Take it one step at a time and remember you are not ever alone.
