A design by NikkiJo, focusing on hope (sun), new life/new beginnings (Butterflies and koru), the hand of God or something bigger than ourselves, and the love of her homeland, New Zealand (Silver Fern)
first time to a retail store in four years manageable from improvements due to treatment. Still took all day to get me up, dressed and ready so we only had about 45minutes til close by the time we made it. I collapsed afterward from the exertion but it was an awesome achievement. October 2015
A logistical mission to travel when so ill, requiring wheelchair, special foods, meds, oxygen and much lying down, but a success and maintaining a smile!
December 2015
Nikki:
The cost of battling Lyme and M.E is phenomenal.
I became ill when I was a full time student (veterinary medicine) so, even though I had always had part time work through school and university days, I started the illness with no savings, and a hefty student loan.
I am fortunate that over the years my parents have been able and willing to support me in trying various treatments. whilst these treatments have not been a cure, they have been vital in slowing progression of the illnesses, giving me some respite at times from the worst of the symptoms and, much like in the treatment of cancers or other life threatening illnesses, 'buying time', so that I can a) improve quality of life as much as possible for as long as possible and b) survive the worst of this illness and stay as strong as possible for as long as possible so that if a new treatment option comes along, it is not too late to try it and have it help me.
We have not tallied the total costs of treatment over the 18years I have been ill and do not wish to, though ball park figures it is well over $150 000. This does not include the loss of potential earnings, nor does it take into account that everything my parents are paying for is coming out of their retirement and savings ... a standard middle class, hard working family, both parents are retirement age but still work full time, in large part to continue to allow me to access treatment. The sacrifices they continue to make for me are truly humbling. There is no doubt though that after so many years, and with no guaranteed 'finish line' in sight, it is a strain.
The past 18months alone (since mid 2014, when I found I had Lyme disease and began with intensive treatment), have cost $50 000 for IV medications, hyperbaric treatment, travel and accommodation costs, specialist fees, specialised testing, unfunded medications and miscellaneous medical costs.
This year 2016 and next 2017, we are looking at needing a minimum of $40 000 for each year, total $80 000, so that we can 'hit it hard' and get a good run on the intensive hyperbaric and IV treatments, the plan being 'more now less later' approach. The hope is that I will continue to improve and eventually need less and less treatment and be well enough to earn my own income etc.
We looked at every possible way of minimising costs, including whether it was feasible to purchase our own hyperbaric chamber, however the portable chambers are not as effective and it still comes down to having someone with the medical and technical expertise to safely operate the chamber and monitor the patient inside, something that we could not cater for outside of the treatment centre that I am attending. The chamber I receive treatment in is fully OSH approved with full time hyperbaric nurses and doctors in attendance. the medical knowledge and support is second to none.
I often have seizures and collapses during and after treatment, including in the tank, so it is vital that the staff monitoring me know what they are doing!
Each session is $287, currently I am doing treatment in blocks of 20-25 sessions at once daily five times a week, then a few weeks off then beginning again. It is possible for me to look at twice daily sessions if I become well enough to cope with the demands of this. we may also look at more continuous treatment, should funds allow.
Even if we do a bare minimum of 100 treatment of hyperbaric this year, that without any other treatment will be $28 700, a huge sum of money to need to find - but vitally important.
The IVs are $200 each, give or take a little according to what goes in the mix each time. these are up to 3times a week for the full IV, and up to 5x a week for IV pushes (at a lesser cost). Currently we have slowed down on these IV treatments as I wasn't coping with them however we will look to reintroduce them when it is feasible and will provide benefit.
Initially, the IVs and high dose Vit C were the first thing in years to provide any improvement. I was seriously unwell with the 'herx' reaction (Herxheimer response, bugs dying, causing inflammation etc), with an increase in seizures and sweats and generally feeling terrible ... I would be sitting at treatment on 30degree days in a puffer jacket, about four layers of clothing on, plus blankets and a heat pump and I'd still be shivering and have my head in a bowl, but it was worth it and was the beginning of getting some form of life back, little things like being able to shower or walk around my own home
So are the costs worth it? Absolutely. The difference from being completely housebound and bedridden even to where I am at now is so huge. I will post another update shortly on the milestones that have happened since starting treatment.
Thank you again for your support!
From Nikki:
I often struggle with the concept of how much money is being spent on me to allow me to receive treatment. How can I justify such costs, am I worth this amount of money?
It's terrible when my own life and health comes down to a financial figure. Two things helped me overcome this struggle toward receiving help and such expensive treatment:
1) someone reminded me that other treatments, such as for cancer, are all equally as expensive and often more-so, it's just that the tax payer foots the bill, so for instance chemotherapy patients don't see the $300 000 per year bill, or open heart surgery patients don't see that bill. The list could go on.
2) I have always lived my life in the best way possible, no drugs, no alcohol, highly motivated, always trying to help others and be the best version of myself I can be. I have retained this attitude to life in regard to beating this illness, I have never given up, I constantly strive to better myself and make the best of a bad situation and constantly seek out new options that may assist me getting my life back.
I know how much I have suffered and I know how much I can offer the world if I can get well ... I will definitely be paying it forward when I am able ... and so I have accepted that in the meantime, I need to allow others to give me a helping hand so that in time, I can return to being a functioning member of society and really make a difference in the world
a) from Nicola: "we know from test results that I am basically functioning as a 'facultative aneorobe' ie my blood can saturate normally with oxygen but it then cannot transport oxygen into the cells efficiently, meaning I am effectively always trying to function on anaerobic energy rather than aerobic, constantly starved of oxygen. (A bit like your body trying to live life at a sprint with no recovery in between, all its reserves constantly get used up and cannot replenish with enough oxygen and nutrients for the cells and muscles, including heart muscle, to function properly)". It is the underlying infection that causes this 'facultative anaerobic state' and leads to, amongst other problems, dire cardiac and neurological symptoms including hypoxic seizures and severely reduced cardiac capacity/output.
We also know that the borrelia and co-infections (that infect every part of the body but in particular the brain, heart, kidney/urinary tract and central nervous system) are anaerobic. Thus by increasing the oxgyen concentration to hypersaturate the cells, not only are we giving my body a chance to oxygenate properly but we are making the environment aerobic and therefore as unsuitable an environment as possible for the anaerobic organisms that are causing the illness.
b) The benefit of the hyperbaric approach is also is that it is systemic - the oxygen hypersaturates every part of the body and brain and reaches the bugs that the antibiotics alone cannot easily target (Borrelia and co-infections are extremely difficult to treat as they hide in the deep muscle tissues and brain and often evade the immune system). It is also effectively 'broad-spectrum' ie it will kill all the infections and in all the phases of their life cycle or forms (eg cystic phase, cell wall form, cell wall deficient form) unlike antibiotics and antivirals that are limited to their particular specificities.
c) Hyperbaric therapy is showing significant benefits for patients with various forms of brain injury, stroke and neurotoxicity, including that seen in Lyme and M.E patients. (The neurological aspects of M.E and neuroborreliosis are essentially an 'infectious brain injury with extreme neurotoxicity and distinct cerebral hypoperfusion', often with evidence of multiple 'mini-stroke' like episodes or brain injury).
d) Hyperbaric medicine reduces inflammation, a crucial aspect in treating Lyme/M.E as the inflammatory pathways in these illnesses become overexpressed, creating many of the neurological and immune symptoms associated with the illness.
e) Many people with M.E/Lyme have genetic mutations that contribute to the chronic nature of this illness. These mutations need to be addressed in order to have any significant chance of reversing the illness and regaining any quality of life. We will be testing for these mutations and utilising various treatments to address these issues however the hyperbaric therapy will automatically aid in this treatment, with patients showing positive changes in epigenetic expression post-treatment. ('Epigenetic expression' refers to the fact that the genes/mutations themselves cannot be changed but the right treatments can 'switch off' the expression of the offending mutations and 'switch on' expression of beneficial genes).
f) Hyperbaric treatment shows a significant increase in stem cell production after the duration of treatment, significantly aiding in the recovery from progressive chronic illness
g) Hyperbaric therapy is non-invasive and no on-going adverse side effects, when utilised correctly. This is in stark contrast to many treatment options (including chemotherapy, which has been shown to be useful in some M.E/Lyme patients and was discussed as an option for Nicola but we felt it was too experimental with too many negative side effects for too little promised gain)
