Out of the closet & into the Lymelight

October has been declared a month for building Lyme Disease awareness, and to this end I would like to share with you my story. This is a piece close to my heart, close to a place I am not sure I am ready to share. But this is in aid of raising awareness, and hopefully helping others along the way. 

I have Lyme disease, a bacterial infection that affects me on all levels from my organs, tissues, and cellular function, to my energy, emotions, hormones, fertility and capacity for life.  The toxicity, inflammation, depletion and damage that results from this infection causes me both chronic degenerative symptoms, overlaid with cyclic acute flare ups, affecting every system in my body.  
 
In 2004, near Torquay Victoria, I was bitten by a tick.  In other parts of the world, tick carried Lyme disease is at epidemic proportions, affecting millions of people worldwide.   In Australia though, the Government and Medical system fails to acknowledge the existence of Lyme disease locally.  As a result I went undiagnosed for over eight years, allowing the disease to deeply take root.  

Each day brings something a little different. It is a cyclic disease with ebbs and flares as the life-cycles of the Lyme bacteria phase through, and different organs battle through the effects.  There are staple symptoms though: pain, lethargy, scary heart pain & beat fluctuations, tremors, cold sweats, memory loss, hormone imbalances, numbness, and foggy brain – they are all part of my everyday life.   

I HAD to adapt my life to the limitations this disease puts on me, but I refuse to let it bring me down.  I consciously choose to push through, to force my body by pure will most days, so that I may live my life.   I built a career around Yoga for this reason; it is one of the few things that helps me function and feel a little more ‘normal’.  It helps keep me sane while avoiding the inflammatory seize-up effects in my body.  It supports me mentally, emotionally and physically, keeping my body strong while stimulating my immune system to help fight this war.  
I’d be lost without it.

 Many people haven’t heard of Lyme disease, let alone understand how debilitating it is.  Lyme disease is considered non-existent in Australia, so as a consequence this disease is relatively unknown, often being defined instead by the symptoms and pathologies it causes – Fibromyalgia, Chronic Fatigue, Motor Neuron Disease, Guillain-Barre Syndrome, Lupus, Alzeimer’s, Juvenile Reumatoid Arthritis, MS, Parkinsons, etc.  The irony is that is preventable if it is treated early.  A preventive course of antibiotics and an antifungal straight away for six to eight weeks after a tick bite or possible  infective exposure, this disease can be entirely diverted.  If, that is, the medical system doesn’t let you down by misdiagnosing and delaying treatment.   For me, eight years undiagnosed after a tick bite, means I have extensive and permanent damage to most systems of my body, and I will be dealing with this for the rest of my life.

 My name is Korinne McNeill and I have Lyme disease. This is my story.

The alarm goes off. I breathe.  All I can feel is pain, pulsing through my joints, my bones, my muscles, my  head. Pain as though I have run a marathon, pulled an all-night bender …then got hit by a semi-trailer.  My head pounds. It feels as though I have a clamp wrapped around it.  Any movement, any light, any noise
making it tighter. My heart… it scares me, it’s beating so hard and fast, and it
hurts too. I want to throw up. 
 
My arms, my legs, are heavy. They feel as though they are made of lead. I try to move them, try to roll over, trying to wake up, trying to send life into this
lifeless body. But all I can do is breath.  Just think, with every breath, “You can
do this.” I look at my fingers, and ask them to move. I look at my arms and ask
them to move. Then slowly, with more breath, and more time, I can sit up, but I
can’t see clearly yet. My vision is blurred, my head is spinning, I feel like I
am dying. I want to throw up. 
 
A bit  more breath, a bit more time, and slowly I make my way to the kitchen where I know that coffee and a few handfuls of supplements will offer some life
  support. Breakfast, and my blood sugar starts to rise, the energy will come and
  I will start  to pretend to be normal. The pain, still there, the nausea, still there, my heart, still paining, my arms, still numb. “You can do this.”

 I get in the car and drive to work, as what choice do I have? Every day is a battle – and I can’t call in sick every day. I fall asleep at the traffic lights, my body feels toxic, my body so tired, my energy eroded by pain. I pull over feeling the need to vomit. I breathe through it, “You can do this.”

 At work some of my co-workers imply that Chronic Fatigue Syndrome, which I had been diagnosed with, is all in the head. Those who really know me can see my  inflammation is out of control, I am in a dire state of dis-ease. My face is
puffy, my eyes are dull, my soul is drained.

For over eight years this was my un-named battle – I’d make it through the work week to crawl home and collapse comatose over the weekend, while Monday loomed all too soon to have to replay and do it all over again. Not every day was this bad, but many were, and any time I did something a little adventurous – like have an alcoholic drink, eat too much sugar or stay up past midnight, I was comatose for a week. 

Eight years and tens of thousands of dollars seeing GPs, physicists , endocrinologists, hematologists,  neurologists, chiropractors, osteopaths, physiotherapists,  Traditional Chinese Medicine practitioners and more. Eight years of CAT scans, ultrasounds, MRIs; countless blood tests all confirming that things were not right – yet not providing enough evidence to put a name it. I ran the gauntlet.  The western medicine system bounced me from specialist to specialist to no avail.

 “You have chronic fatigue syndrome.”  I refused to believe it.  A syndrome
  is a symptom, not a cause, and I knew that there was something else. Other practitioners declined to treat me because they didn’t understand it, and where perplexed by the way my body behaved.  I looked okay on the outside, but my blood test results and symptoms painted a different picture. 

That is one of the biggest challenges for those with Lyme disease, they don’t always look sick, so people think they’re faking, or seeking attention. 
 
I am an absurdly healthy person, I have to be.   I do everything within my power to stay as healthy as possible. Yoga, meditation, clean diet, no alcohol, supplements, lots of sleep and more. But this didn’t help me with my diagnosis. As someone who presents healthy, when you sit in front of a GP with a list of over 30 big complaints like heart pain, difficulty breathing, hormonal problems, brain dysfunction, neurological issues – they look at you like ‘there’s something wrong with you alright’ – here’s a script for some anti-depressants, as they give you that ‘you’re a hypochondriac’ look. 
 
To make matters worse I had  friends telling me the same thing. “Perhaps it’s in your head. Maybe you need to talk to someone.” For me this was the worst and most challenging part of the disease. 

The physical elements I could deal with but the mental and emotional effect of constantly being told  it’s in your head – even when you have tests showing that you are unwell and your body is not functioning properly – was the most defeating part. It created a mental war within me. As a result, I shut down. I stopped talking.  I never spoke about how sick I was with anyone. This was the loneliest time of my life. 

My Naturopath, Monica Williams, my guardian angel, was the only person who knew the extent of how sick I was, the only person who believed me, and who I truly confided in.   In fact it was her, my Naturopath, who suspected the Lyme disease, and suggested I see a GP in Melbourne who specialized in it.

On March 16th 2012 I received a phone call that changed everything.  My GP called to tell me that my tests for Lyme disease had come back positive, but that’s not all, all the other precursors that point to Lyme and other possible
co-infections came back positive.  This was the most emotional day of my
life.  I ended up curled in a ball, crying my eyes out for hours. Not because I had Lyme disease, but because of the relief, I finally had an answer.  I was not crazy.  I also knew that now I could identify the battle I was fighting, I could use more appropriate weapons. And finally I didn’t have to expend so much energy pretending I was okay. 

The treatment began and helped me feel much better, but it continues – an ongoing combination of alternative therapies and western drugs.   

I can be almost normal on some days, but totally debilitated on others.   My digestive system is weak, I live on a gluten free, lactose free, soy free, low fructose and vegetarian diet – and even then I still have strong reactions to many things I eat.  All my intolerances cause severe reactions –nausea, vomiting, blurred vision, headaches, diarrhea, and an aggravation in pain and inflammation that lasts for days. 

I have a low functioning pituitary gland, adrenal glands, and thyroid – and at this stage it is unlikely I will be able to have children. My liver is like a temperamental child – often leaving me exhausted and toxic, and throwing a tantrum whenever I overdo it.  Drinking is not an option. Sweats, tremors, numbness, shortness of breath, dizziness, black outs – all symptoms that come and go. My heart still scares me, waking me up in the night with pain. Sometimes feeling like it will explode, other times feeling like it wants to conk out. My brain struggles, memory the most obvious symptom with many others as well. Pain and the lethargy always there, the toxicity, the inflammation determining how severe. 
 
But I am doing this. I am choosing not to be a victim to this disease. I am fighting it. I am riding the ebbs and flows, the growth of the bacteria, the killing of the bacteria and just doing what I can. I am ok. I choose to be happy. I choose to think strong. I may  not feel the kind of ‘normal’ I felt nine and a half years ago, but I have made a better life along the way.  My condition forced me to leave a stressful Marketing role in the corporate world, and rebuild my life from the ground up. It has led me to a life that I love,  sharing my passion of yoga, health and life with other people. I am so grateful I can make a living doing this. Yoga is the one thing (other than sleep) that consistently gives me more energy than it takes, and it is now my work. 
 
Others have not been so lucky. Lyme disease can be paralyzing, disabling and even fatal. My doctor said that if I wasn’t as stubborn, healthy and grounded as I am, I most likely would have been paralyzed by the time I was diagnosed.   

Through this experience I have realized that I have to share my story.  I now tell people that I have Lyme disease, not for sympathy, but to raise awareness. 
I want people to know what it is, so that others don’t have to go through the suffering of misdiagnosis, and long term implications that I went and am going 
through.

If you or anyone you know are really unwell with a host of unexplainable symptoms, have a look at the website below, familiarize yourself with the symptoms of Lyme disease. If you suspect it, then get in touch with one of the GPs through the Lyme Association of Australia and get tested. Lyme disease is a world-wide problem. If you have it, and you catch it early enough, you can treat it.  The method of transfer still needs a lot of research.  It is possible
that if a tick can infect a human, could mosquitos? With or without a tick bite, knowing about this disease could change your life, or someone else’s. 

 http://www.lymedisease.org.au/about-lyme-disease/about-lyme-disease/ 

Written by Korinne McNeill.