Help Helen Fight Lyme Disease

My name is Helen and I have Lyme disease/ Chronic Lyme/ Late-stage Lyme/ a tick borne disease. I am currently in Malaysia soon to commence my hyperthermia and IV antibiotic treatment at Dr Radzi’s Oncology and Hyperthermia Centre. I am in Malaysia as I’ve exhausted all treatment options in Australia, and my Dr believes that this is my next best hope of a more effective treatment regime to cure me of Lyme.

My Lyme Story:

I am 29 years old, and I have studied and worked to help people with their mental health issues. On the outside, I have tried to maintain my optimism, bright spirit and determination, and progress in my life and do things as ‘normal’ as possible. But under my skin, my body undergoes a daily hidden battle, a battle it is not winning. My full story is long and complex, however I have been silently suffering for many years, progressively getting worst. And after some time of attempting to find the reasons for my increasing symptoms, and not having the right treatment, I gained a diagnosis of borrelia burgdorferi (the Lyme bacteria) in 2016. At first a diagnosis was a relief as I finally had a name for what my symptoms were, and I knew I wasn’t being a hyperchondriac. However, in time I realised how difficult and long my fight to treat Lyme would be. Lyme: A complex invisible disorder has progressively affected all of my bodily organs. It has been very difficult to treat as it affects every patient differently and has very limited treatment options in Australia.

Some of my numerous symptoms include joint swelling, stiffness and pain, chronic fatigue, painful restricted breathing, nerve sensitivity, heart palpitations, nausea, abdominal pains, body chills, swollen glands, irritable bladder, irritable bowel, headaches, muscle pains, head eye pressure, muscular numbness, concentration, memory and thinking issues, intermittent reduced hearing, light-headedness, increased bruising, hair loss, body twitches, stiff neck, neck pain, body temperature difficulties, fainting, intolerance to heat, weight loss and sleep issues. These symptoms have become the norm for me and sadly I don’t even remember what it feels like to be physically healthy. Nearly 2 years’ worth of medical treatment, oral and intravenous antibiotics, nutrients, countless supplements, alternative therapies and radical dietary and lifestyle adjustments have helped slow the progression of my illness, however I have still gotten progressively worst. I have been bed bound at times and unable to function needing assistance from family. The unpredictability of the illness is one of the hardest things to manage.

 Why Ask for Help?

GoFundMe has been a last resort for me- to ask for financial help from family, friends and strangers. Since the age of 18 years old, I have always financially supported myself. Also, as a mental health professional I have always helped others. Like those people who have needed my help in the past, now I am too in need of asking others for help and I have set my pride aside. Ultimately, I need financial help to continue my treatment in a timely manner, as delaying treatment reverses the gains I’ve made.

I have not worked in nearly 3 years as I was completing a full time Masters with assistance and because I have needed more intensive treatment. My 2 years of Lyme treatment have been extremely expensive (as there is limited medicare rebate on treatment). I have lost count of how many $10,000’s I have spent on treatment in Australia. All of my life’s savings has been given to Lyme treatment, which is terribly sad, but I am also happy to have been able to support myself thus far. As mentioned above, I have exhausted available effective medical treatments in Australia and my medical Dr recommended that Malaysia would be my next best hope. That is why I am in Malaysia now. Malaysia is expected to cost me over $20,000 on a tight budget for the recommended 2 treatments. Between my 2 Malaysia hyperthermia treatments, and after these treatments, I will need to undergo further medical treatment in Australia for some time which will cost about $30,000 for 6 months. The future costs of ongoing treatment are unknown and quite frightening, so my need to find money to make this happen keeps increasing. However, I have hope and optimism that in time, these treatments will work and bring me back to normality.

Why Only Ask for Help Now?

I have been very reluctant to tell people that I have Lyme due to the debated view that chronic Lyme disease doesn’t exist, the stigma this brings that it is ‘in peoples head’, and the lack of awareness and understanding of Lyme in Australia. Upon my diagnosis, I was told my expected treatment would be from 6 months to 2 years, so I had hoped that I could financially support myself until then. Sadly this hasn’t been the case and my future treatment duration is uncertain. Additionally, it has taken me some time to actually write this (with help) and reach out for help as I have prided myself in being a hard-working, independent and goal-oriented person.

I never wanted Lyme to define me because I am so much more than this illness. However, in considering my decision to start a GoFundMe page, I decided that it was time for me to come out, tell my story, and no longer keep my illness a secret. I want to increase Lyme awareness, an illness that is now the focus of my day to day life, & has resulted in my dire financial situation. Also, most of my energy, time and money is focused on Lyme treatment now which has led me to reach out for help. Gradually over the last few years I have become more accepting of having this illness, I have started telling people about my Lyme illness, and I have been able to accept some help which I am forever grateful for.

Lyme Disease Awareness:

What is Lyme Disease? Put simply, it is a bacterial infection that is pervasive, penetrates the whole body and can be resistant to treatment. It is typically transmitted by a tick. It is often called the invisible, great imitator illness as Lyme symptoms change as the bacteria travels and changes forms in your body.

Lyme disease can be fatal and even when treated can leave irreversible damage. I am proud and privileged to speak out on behalf of people with Lyme- for those who can no longer read, write, walk, think, but yet have the courage to fight every day despite the many challenges they face.

In Australia, Lyme disease in any of its various names is not recognised. This also means that even if you have been bitten overseas (e.g. North America, UK where acute Lyme is diagnosable and treated) and present to a Dr in Australia, they cannot diagnose you with Lyme & then they cannot give you any medical treatment for it. So-diagnosis is impossible unless you are lucky enough to find a Lyme literate Doctor (who currently have 100’s on their waitlists). To those Drs and practitioners that do help to treat Lyme – THANK YOU!  Early diagnosis and treatment of Lyme, results in being cured in some weeks. Tragically, early intervention for any Australian is almost impossible, and so the Lyme population increases. 

Public Reaction to Lyme

Society has a lot of compassion for people with many medical conditions which is extremely justified. However in contrast, Lyme sufferers are often met with confusion, scepticism, questioning and dismissal, which can be understandable (partly due to lack of awareness). Unfortunately this is a very difficult thing to experience when you’re already dealing with crippling Lyme symptoms every single day. I hope to help raise awareness, so that Lyme sufferers are better understood J

Giving Back One Day

Once I’m more able to, I will transform my life in a meaningful way and actively be involved in directly helping Lyme sufferers with my knowledge, skills, insights, personal experience and advocacy stance. Until then….

Thank you!

Thank you for reading my GoFundMe page which I have poured my heart and soul into and for becoming more Lyme aware as a result of reading my page.

If you are able to donate anything within your means, no matter how small, I will be forever thankful of your kind heart. Your thoughtful, compassionate act is one that will never be forgotten. Hope is invaluable. Despite my current hardships, I trust that my journey will ultimately bring out the best in me and in others.

I have provided some links below if you’d like to become more informed of Lyme disease. Also, I am no expert of Lyme, but I am ever so happy to help others suffering from Lyme where I can.

Thank you again and I hope to update you further as my Malaysia treatment begins. Wish me luck!

Lots of Love

Helen

helen.lymerecovery@gmail.com

Link to newspaper: 8th April 2017 Australians living with insect borne illness dealing with high prices

http://www.news.com.au/lifestyle/health/health-problems/australians-living-with-insect-borne-illness-dealing-with-high-prices/news-story/7305d4497533ccce718e73c1250792b8

Link to: Lyme Disease Association of Australia;  http://www.lymedisease.org.au/

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Organizer

Akemi Baca 
Organizer
Sydney, Australia
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