Mad Money!

As you can see from the title of this post, I am focusing on the financial consequences of having Lyme and co-infections. Not only does your body and brain get hit hard by this disease, it can demolish your bank account too. It’s hard enough realising that medical professionals in the UK could determine your fate when you are struck down with this illness, and personally I can tell you emotionally that this is hard to comprehend, but it doesn’t end there. I was told face-to-face by specialists in the UK, that there was nothing more they could do for me. So what was I meant to do…remain ill for the rest of my life? No way! Those who know me will be fully aware that I have always had a lust for life, ambition and determination, and I would not be prepared to slowly fade away with time.

After extensive research with regards to treatment options, I came to the conclusion that to get any medical help, let alone a chance of a future, I had to come to the USA for treatment…hence I am now in California being seen by a ‘Lyme literate medical doctor’ (LLMD). To enable this trip and the start of a long journey of recovery, I had to set up a fundraising page – https://fundrazr.com/campaigns/3erIe – There is no doubt that without the donated funds, I simply would not be able to have the treatment opportunity that I am having now.

I initially set my fundraising target at £20,000. I thought that this amount would cover one medical trip to California plus monthly medication and supplements once home in the UK for at least 6 months – 1 year. Unfortunately once starting treatment you soon realise how complicated the illness is and the recovery process. There is no set amount of time that one can be given to recover. One person may take 3 years, another may take 10. There are many factors that determine this, for example; how long you have been ill, what co-infections, you may have, not to mention the difficult neurological and gut complications which myself and many other Lyme patients encounter.

Since starting treatment I have also discovered I have 2 “dreaded” genotypes which I explain in more detail in the previous blog post. A basic summary of this is that I am highly sensitive to both environmental toxins as well as the toxins released from this disease especially when I have a ‘die off’ of bacteria. It is scientifically proven that having these genotypes, results in the inability to recover from Lyme with antibiotics alone. In fact my sickness would worsen and my health continue to deteriorate as my body is unable to detox without additional support from supplements and alternative therapies. This gene complication will without a doubt have an effect on the time it takes my body to recover from this illness and methods of detox will in large play a part In the treatment programme.

Last night I sat down and did some all important sums, and I can tell you now, this was not easy with my brain-fog! I feel as if the ‘brain fairies’ snuck in one evening whilst I was sleeping and replaced the content of my head with Play-Doh! No joke! OK back to the maths!

I have kept a weekly log of the costs of coming to America and it has far exceeded my original estimations. The first week was considerably more expensive as expected, as this included travelling to the airport, a nights accommodation at the airport due to my extreme fatigue, return flights, initial consultation costs and a number of medicines and supplements. Oh yeah, and not to mention my un-planned trip to ER! Even with travel insurance there was an excess charge.

For the initial 6 weeks that I have been in the USA, my outgoings have totalled £8237.86

When working out the costs per week, excluding week 1, the average equals £1100.00 per/week. This includes accommodation, food (not cheap when on gluten, sugar and dairy free), taxi to the clinic 3 times a week, hep-lock insertions and IV antibiotic medications and administration kits, blood ozones, IV and oral herbal/nutritional supplements, doctors appointments, and regular and specialist blood tests.

My IV medication has now begun and I need a minimum of 10 weeks of this form of antibiotic and nutritional treatment. This would mean my stay here in California would total 3 months bringing me to the first weekend in April to fly home. Using the average costs worked out above, my 3 month stay here will total £17,000 – give or take a few hundred pounds for an emergency, extra blood tests etc… If my current fundraising page reaches the total of £20,000 I would take home approximately £18,500. This is because the website itself takes a percentage of each donation. All sites do this as I am not a registered charity such as Macmillan or Cancer research. Although this total will just cover this trip here, my treatment by no means is then over. I must continue to pay to have regular phone appointments with my Lyme doctor. This monitoring by a professional doctor is vital when on such large amounts of medication. I must also source supplements and monthly oral antibiotic prescriptions from the USA, as well as feed myself!

I will not be able to return to work for the foreseeable future and this leaves me with huge worries and stresses for what the future holds. To stop treatment after this trip would be so detrimental to my health and I may as well have not even bothered starting if I don’t continue. Each bacterial infection has to be irradicated thoroughly over a long period of time to enable the best chance of becoming symptom free and in remission.

This leads me to now change my total on my fundraising page significantly, and I was keen to share with you this breakdown of costs. I also feel it is only right to account for all the money that has been donated to date. I know when I have donated in the past to many charities I am always intrigued as to see how my donations have contributed to the bigger picture. I am filing and keeping every receipt of all monies regarding this treatment, so I am able to be open, honest and accountable. Money is a difficult subject to discuss, but the fact is my Mum was right, “money trees don’t grow at the bottom of the garden”!

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