Help Nys Beat Lyme Disease

Help Nys Beat Lyme Disease

“Anyone who has met Nys knows she is a beautiful, kind, authentic, compassionate, determined, big-hearted and generous soul. She is a loving mother, partner, daughter, sister, aunty, god-parent, friend, psychologist, and a valued community member.

It has been heartbreaking to watch her experience this life-shattering disease and to see both her, Arlo (her 4-year-old son) and her family suffer. It is time for us to support her to access the treatment she deserves so that she can get well and live her life again.”

- Rachel, close friend of 34 years -

The Short Story

Hello beautiful family, friends, loved ones and friends of loved ones,

This GoFundMe page is dedicated towards raising money to help fund my Lyme disease treatment. I have been suffering from this horrific and not easily diagnosed disease for over 20 years. I now need your support to get my health, life and independence back.

My family and I have spent years and upwards of $100k trying to beat this harrowing chronic illness, which isn’t covered by Medicare or private health insurance. At times it seems like a bottomless pit of pain and suffering that sucks your energy dry and leaves you in a constant state of despair with little hope for the future.

It’s not easy to ask others for help, but this is where I’ve landed. The full story of my journey and struggle for my health is below. It is a painful reality but I’ve not given up.

I have recently found renewed hope in my healing journey through researching more advanced treatment options available overseas where Lyme disease is more widely recognised.

I have been offered a much sought-after appointment at a specialist Lyme clinic in the United States in July. This treatment will teach my immune system to re-target and eliminate Lyme disease and other associated infections. I will require a follow-up treatment in approximately four months, as well as ongoing supportive treatments between sessions. Many others like me, who have suffered for many years from chronic Lyme have had promising results from this treatment, commonly sharing it “gave them back [their] life”. Their stories fill me with so much hope for myself and my young son Arlo, who is my main motivation for fighting.

Everyone knows that life as a parent is unpredictable, messy, chaotic… and full of love. I was expecting the unexpected when I had Arlo nearly five years ago, but I wasn’t prepared for the brutal reality we have ended up in. Lyme disease has stolen so many of the magical moments that being a Mum brings. Our weeks, days and hours are ruled by my pain, sickness and exhaustion.

It’s the simple things that create long-lasting memories that I am fighting for. I desperately want to be able to pick up my son, chase him in the park, tuck him into bed, make his lunch boxes and drop him off at pre-school. I am sick and tired of being too sick and tired to be able to live this wonderful life we have. I want us to explore the world together. I believe he deserves a healthy, pain-free Mum and I will do everything it takes to make that happen – even if it means being vulnerable and publicly admitting I can’t do it without your help.

The initial aim of this GoFundMe Project is $50,000. The reality is that this is more than likely a modest target as this disease is not easily beaten and overseas treatment is very expensive.

Every little bit helps - whether it’s as much as shouting me a cuppa, or a little more. Any help you can offer would be gratefully received.

I am not asking for the world - but for Arlo and I, this does mean the world.

I just want a chance. Your help will give me that chance.

You can also support us by sharing this page with your networks to help spread awareness of Lyme disease and the many others who also suffer in silence.

With much love and gratitude,

Nys and Arlo xxx

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The Full Story

As many of you know, I have been on a long chronic health journey suffering from many mystery symptoms since I was 18 years old. When I started university, I began experiencing debilitating daily migraines, gut issues and food sensitivities, chronic fatigue, hormonal issues, rashes, and my immunity was so low that I would catch every single virus or flu.

When I should have been enjoying my first years at university, I was instead in and out of doctors’ offices, EDs and specialist clinics trying to find answers to my worsening health. This continued through my twenties, with doctors throwing their hands in the air, and not taking me seriously when through my own research I asked if it could possibly be Lyme disease.

In my thirties, after the birth of my son Arlo, my health rapidly deteriorated even further. I could no longer rely on my body to function and started spending whole days unwell in bed. By this stage I was experiencing 30+ daily symptoms, including debilitating chronic fatigue, widespread pain, joint and muscular issues, spine and pelvic dysfunction, gut issues, nausea, migraines, cognitive dysfunction and severe insomnia.

I also started having severe reactions to my environment and became unable to safely enter most buildings due to mould exposure. My mould reactions became so severe that my Mum had to sell our family home of 20+ years where Arlo and I were living at the time as I could no longer safely reside there. As well as mould, I now react to many foods, chemicals, noise, light and even get severe reactions to Arlo as he returns home wearing different sunscreen, laundry detergents, bug sprays and shampoo etc. To feel like I am allergic to my own son is heartbreaking.

The Impact

My health issues have made my parenting journey utterly devastating. I have tears as I write this. For Arlo’s entire life, I have been extremely unwell and relied on my family and Arlo’s Dad to care for him. My beautiful Mum has turned her life upside down to support us. Arlo has become used to Mummy being too sick to get out of bed, to play or do the fun things he deserves in a Mum. He regularly asks “When will you be better Mummy?”, which is impossible for me to answer. It absolutely breaks my heart that I cannot offer him more right now as he rightfully deserves.

With so many daily symptoms and all my limited energy going to Arlo and healing, I rarely have energy to socialise and have lost many relationships because of this. I have missed funerals (including my Grandma’s), weddings, birthdays, babies being born and all other major life events these past few years. It is also very difficult to relate to friends and peers as I am constantly in survival mode fighting the next health crisis, and my health reality is difficult for people to understand.

I have also been unable to work for several years. Anyone who knows me knows how hard I worked to become a psychologist. I was newly registered when Arlo was born. To not be able to do the work I love is devastating personally as well as financially. Serving others is deeply important to me.

The loss of my ability to work has also come with a dramatic increase in health-related expenses (roughly $1-2k per month on supplements and treatments), none of which are covered by Medicare or health insurance. This is entirely unsustainable long-term. With my personal savings exhausted, my family has been generously supporting me financially these past few years, but this is no longer financially viable for them.

The enormous amounts of pain, grief and loss I have faced these past few years has taken its toll mentally and emotionally. Whilst I feel I have made tremendous emotional and spiritual growth on this journey, many days it is hard to keep fighting… especially when hope and opportunities are limited.

What is Lyme Disease?

Lyme disease is a tick-borne illness caused by a bacterium which the tick injects into the host. The bacterium then multiplies and can affect any organ of the body including the brain, nervous system, gut, muscles and joints, and the heart. Unfortunately, if not treated in the early days Lyme disease can become chronic, at which point treatments and recovery become extremely complex as well as increasingly expensive.

Lyme disease is often referred to as ‘the Great Imitator’ because it mimics many other diseases including MS, fibromyalgia and chronic fatigue syndrome (all of which I have been previously misdiagnosed with).

You can read more about Lyme disease at this link: https://www.lymedisease.org/

Diagnosis

Getting a Lyme diagnosis is technically challenging, expensive and emotionally draining, especially in Australia where it is not yet medically recognised (despite being widely recognised in Europe and the United States). This means local treatment options are limited, often ineffective or outdated and not supported by Medicare.

My personal journey with Lyme disease has been a long and confusing one. It was only within the last two years, because I never gave up searching for answers and advocating for myself, that I was finally diagnosed with chronic Lyme disease through consulting international specialists. Sadly, my difficulty getting a diagnosis is a very common story for Lyme Disease sufferers, making symptoms more severe and treatment much more difficult.

My last recalled tick bites were as a little girl, meaning I have been affected by this disease for more than 20 years. Because of the speed at which Lyme bacteria multiplies, if left undiagnosed for a long time, it can infiltrate nerve cells, the brain, other organs, collagen and connective tissue, making it difficult to purge from the body. The organism is extremely tenacious and develops defence mechanisms that make it largely ineffective to kill with antibiotics (unless treated early within 4-6 weeks), despite this still being the main treatment available in Australia.

Treatments

Unfortunately there is no single effective treatment for chronic Lyme disease infections. All treatment options are expensive and experimental. What works for one patient may not work for another. Usually it’s a combination of trialling many different treatment options in order to finally heal and regain quality of life. To further complicate things, no Lyme treatment is quick or easy, and most worsen symptoms at least temporarily due to “die off” (or “herxheimer”) reactions. Furthermore, there are very few effective treatment options available here in Australia.

I have been very tenacious and proactive in finding and attempting new treatments, including: mainstream medicine, naturopathy, chiropractic, physiotherapy, psychology, somatic therapy, frequency medicine, acupuncture, chinese medicine, herbals, extensive supplementation, radical diet changes, nervous system regulation, kambo, ayahuasca, and consulting with some of the leading Lyme and Mould specialists in Australia. I have also had multiple PRP and cortisone injections into affected joints with an orthopaedic surgeon.

Moreover, I have completely changed my way of life, reducing most of my daily activities to prioritise rest, treatment, healing and spending time with Arlo whenever I am well enough. Our home has become its own “health clinic” with $30k+ of my own and my family’s savings spent on health equipment such as a hyperbaric oxygen chamber, far infrared sauna, rife machine and ozone generator.

I spend approximately 1.5-2 hours every morning doing necessary detox activities to help my body remove toxins and reduce chronic inflammation. On the good days where I am not bedridden, I must manage my energy by resting from midday each day, including spending 2 hours in the hyperbaric oxygen chamber. I have made radical diet changes and implemented extensive supplement and herbal protocols. I am also working on brain retraining and nervous system regulation to further support my healing.

While these things may help to manage my daily symptoms, none of them can solve the underlying problem: the decades long Lyme disease infection.

I need your help

And so I am here, vulnerably asking you to please help me and my family. Lyme disease has taken so much from us, and we need your help to keep fighting it.

The daily pain, sickness and suffering have become relentless. Both Arlo and I deserve more. But we cannot do this alone.

Your support for this fundraiser will enable me to pursue the more advanced and promising medical treatments for Lyme disease that are available overseas. These include Lymestop, hyperthermia, stem cell therapy, ozone dialysis, SOT and specialist Lyme clinics.

All of the funds raised will go towards my treatment and directly related expenses (such flights, accommodation, etc).

Please also support us by sharing this page with your networks. This will not only help to raise funds for my own treatment but will also spread much needed awareness of Lyme disease. This cause has become very close to my heart, as through my own journey, I’ve come to know just how many others like me are also suffering in silence with very little recognition, support or hope for healing.

I will do my best to keep this page and my social media pages updated with my journey.

Instagram: @nyssclaire

Facebook: Nys Claire

Nys xxx