Help Nikki beat Lyme disease and M.E

M.E is classified by the WHO as a Neuro-endocrine and immune disease with complications and symptoms as severe as cancer, MS, HIV/AIDS and Motorneurone disease – yet treatment or the cause of M.E is not yet fully understood.

In 2014, 16years ill and with continued deterioration and worsening of symptoms, Nikki embarked on further investigations via a Lyme and M.E specialist. This led to positive blood test results for Lyme disease and thus a secondary diagnosis of Neurological Lyme Disease (neuroborelliosis). Lyme disease is caused by a spirochete bacterial infection that, in particular, attacks the brain and cardiac muscle. Symptoms overlap with M.E however M.E is usually viral in etiology (Lyme is bacterial). You can have one illness without the other or both together.

It is an all too common theme in the world of Lyme disease to have it go undiagnosed - and thus untreated - for so long. Both Lyme and M.E are potentially fatal and are two of the most disabling illnesses in the world yet both are disregarded by 'the powers that be'. M.E is often dismissed as 'lazy person syndrome' or 'all in your head' and Lyme disease is being ignored - and thus appropriate treatment withheld - in Australasia with authorities denying it exists in either NZ or Australia, as well as denying that it can cause long term illness, despite copious evidence to the contrary. The result is countless thousands of people enduring insurmountable suffering with no support, no treatment and, often, not even an accurate diagnosis

For those who do finally receive a diagnosis, the damage has often already been done and the treatment process is long, painful, expensive with no guarantees that the illness can be halted or reversed. That being said, without treatment, the outcome is certain deterioration.

Many sufferers are completely bed-bound, some are tube fed, some have blindness and speech loss and other neurological symptoms such as violent seizures.

Prior to her Lyme diagnosis, Nikki had already endured 16years of crippling illness, for 14years of which she was almost completely housebound and bed-bound. Searing pain, daily flu-like symptoms, crippling insomnia, agonising chest pains (from the infection attacking her heart), violent and multiple daily seizures are just some of what Nikki endured daily. Most could not imagine this for a week let alone the better part of two decades.

Occasionally, with assistance, Nikki would be able to leave the house for short bursts but would always suffer for days and weeks with worsened symptoms, the 'post exertional' phenomena, that is part and parcel of both these diseases. From early 2013, Nikki could no longer leave the house at all except for medical appointments, and even these were sometimes non- achievable. She was no longer mobile around her own home, often unable to even walk six steps to the ensuite toilet, much less achieve the basics of daily living that most take for granted, like having a shower or cooking tea. (She would commonly have to go a week without showering as was too weak and had next to no support, with neither illness qualifying for carer support). Having visitors or interacting on the phone or computer was out of the question, she was simply too ill, and she would often need spoon feeding.

Her days have been long, lonely and tortuous. This is a person who was once a talented and ambitious age group athlete, scholarship veterinary student and talented musician and equestrian. She has motivation and talent to burn yet this illness has robbed her of nearly 20years and of everything most take for granted - completing a degree, earning a living, travelling, socialising, meeting a partner, starting a family, continuing her sporting career.

The outcomes of any Lyme or M.E treatment cannot be guaranteed - just as is the case for many more mainstream illnesses like cancer - however Nikki has already shown huge relative improvements with the treatment protocol she is now on and, the reailty is, that without treatment, Nikki will only get worse.

All funds raised are going toward enabling her to continue with this treatment, and any additional treatments that may assist in her goal of recovery.

In summary, the money raised will go toward:

- intensive hyperbaric therapy ($300 per session when able to afford it, up to five times per week during intensive rounds)

- her own hyperbaric chamber ($30. 000), this will enable continuous at home treatment rather than the stop start treatment currently determined by finances and ability to get to treatment (Nikki is fully reliant on others to get her to and from appointments)

- IV medication and high dose IV Vitamin C treatments (up to five times weekly, ranging from $100-$200 per treatment)

- PICC line for IV access ($900) - Nikki's veins are 'stuffed', often taking over an hour and countless attempts for doctors and nurses to get IV access through scarred and now leaking veins, leaving Nikki bruised and further exhausted from the additional time each appointment takes

- specialist fees

- unsubsidised prescription medication and prescribed supplements

- specialised unfunded testing to guide treatment protocol and assess progress

- carer fees and assistance with day to day living such as meal preparation

- overseas treatments: potentially Cyprus for intensive ten pass ozone therapy and combined treatments or Germany for hyperthermia and intensive combined treatments (patients are having huge success with both of these treatments and returning to life and work). The cruel irony is that Nikki is currently too unwell to travel for any treatment she desperately needs but if she can get stronger, it may be an option. She would also need to pay for a full time carer to travel with her and find a way to travel business class as she cannot sit upright for long periods of time

The treatment and recovery from Lyme and M.E is complex, on going and expensive but finally, for the first time in years, there is hope for Nikki. She maintains such a strong and positive outlook and believes wholeheartedly there is still a chance at a full life again. She longs to get well and to then help others who are in similar situations. If anyone will beat this, Nikki will, but we need your help.

Any support is gratefully appreciated.

Thank you so much