My family is conscientious about our health. I’ve found supplementing with fish oil, taking probiotics and eating organic, fresh foods essential to our wellbeing. Despite this, I have suffered from multiple viral and bacterial infections for years. It was only because my daughter presented with extreme and severe symptoms that I was finally diagnosed with Lyme disease.
Lyme, a disease thought to be transmitted through a tick bite, exists in North America and Eurasia, but health authorities have always said there is little evidence it occurs in Australia. In May 2013, however, against a backdrop of more doctors diagnosing the disease, Australia’s chief medical officer established an advisory committee to look into Lyme further.
In late 2012, my two-year-old daughter was bitten by a tick in our backyard in Thirroul, NSW. Although we didn’t realise it at the time, she developed the bullseye rash that’s a classic marker of Lyme.
The bites on my daughter’s tiny legs looked like large, hard mosquito bites. She had two or three dots that appeared like chicken pox and a red hot flush that covered her cheeks, ears and joints. We bathed her with colloidal oatmeal and she drank plenty of fluids. I believed her immune system was so strong from our lifestyle choices that this might be how she presented chicken pox.
She began scratching her sinuses and eyes incessantly. Our GP said it was probably a staph infection and told us to treat it with a topical lotion, like calendula.
We attributed the initial bullseye rash to a bug bite or food allergy and it took weeks to get a diagnosis. Our daughter has never been given an antibiotic or vaccine. She has rarely been ill. We’ve always eaten organic, whole foods and gluten-free grains and steered clear of processed foods and additives. As we ruled out food allergies, our diet became sugar-free, dairy-free and eventually grain-free.
Our two-year-old began waking up from scratching her feet furiously in her sleep. I was working at a preschool at the time, so I thought we must have picked up some bug and immediately combed our house for pests. We slathered our bodies with neem oil day and night.
My daughter became uncomfortable in the day and unable to sleep at night. Our nights turned frantic as we ruled out possible parasitic infections, scabies, lice, food allergens and worms. We treated her with natural remedies I discovered online, which helped alleviate many acute distresses.
I first read about Lyme disease while searching the internet to find out what type of worm or parasite was making my daughter so ill. Every person affected with Lyme apparently displays different symptoms, but when I discovered a list of Lyme symptoms online, our daughter ticked (no pun intended) nearly every box.
Our family would wake at night to the sound of our toddler screaming. She complained that the light hurt her eyes as she writhed around, tensing her arms and legs. Her palms were red and swollen, as were the soles of her feet. Some nights her heart would be racing. She sweated profusely from her head and often had “electric shocks” at night: her whole body would jerk, like when someone falls in their sleep. She stopped wanting to walk and run. Her arms and legs were sensitive to our softest touch. One day, she walked across the room on her heels; three weeks later, she dragged one foot behind her as we walked to the bathroom. Terrified is not a strong enough word for the emotions our family was going through.
We drove five hours to Laurieton to see a Lyme specialist. He ran some tests, which had to be sent to the US. Some weeks later he informed us that our entire family had Lyme, as it is spread sexually, through breast milk and blood transfusions, as well as from infected ticks, fleas and mosquitoes. He mentioned that we did not even have to see a tick. (Ed’s note: Lyme is commonly accepted as being transmitted via a tick bite, but some scientific studies indicate theories on these other transmission methods may have validity.)
Lyme disease is a bacterial infection called borreliosis. It’s caused by a species of spiral-shaped bacteria called Borrelia, which can invade the bloodstream, corkscrew into body tissues and replicate. Once in the body, the bacteria suppress the immune system and make it easier for a variety of bacterial, viral, fungal and parasitic infections to thrive. From our reading, we discovered that Lyme is commonly misdiagnosed because it mimics the symptoms of these co-infections and can cause multiple conditions.
We got a diagnosis relatively quickly. Some people will spend decades chasing after the phantom that is called Lyme, as it moves through the cells and tissues, mimicking hundreds of other conditions.
After the initial diagnosis, we found a doctor who was rounded in her knowledge of herbs, nutrition and homœopathy, as well as experienced in treating many patients with Lyme. She emphasised that each treatment must be intricately balanced. If one area is unbalanced, the bacteria, parasites and biofilms can be disrupted and move around, attacking more sensitive nerve cells. Herbal treatments must be rotated every week or so to keep the bacteria from adapting.
We’re currently in the midst of treatment, using a combination of herbal remedies and detoxification regimes. The conventional treatment is antibiotics but specialists have told us the bacteria will adapt to antibiotic treatment, while the patient’s immune system pays the price.
Being treated has a bitter-sweet element to it, though, as we’ve discovered. This is the Herxheimer reaction, or herx. It’s hard to tell if a herx is an actual flare of symptoms or a symptom of recovery. The reaction comes from killing off toxin-producing micro-organisms: their excrement and carcasses release toxins into the body, which can produce horrible symptoms. To me this feels like a horrible flu, but it eventually dissipates and leaves you feeling better (if not totally exhausted).
We also have the additional worry of getting our herbal treatments, all of which come from overseas. The cost and distance puts additional stress on an already demanding situation. All blood tests must be sent to America or Europe to get an accurate diagnosis because the blood needs to be cultured in a specific way, which also comes with a steep pricetag.
It’s been a tough journey for our family, though we’re gradually getting well. We hope more awareness will come to Australia, bringing with it the essentials, like testing, and opening new doorways to recovery and the promise of restoration, vitality and complete wellbeing.
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