My Lyme Story

I was happily working at sea as a stewardess, carefree, crossing the Atlantic, visiting idyllic counties, and living on a beautiful private super yacht, what more could I ask for? Then, soon after a season in the Caribbean, I was struck down with a mystery illness. There really was trouble in paradise.

It all began in the late summer of 2012, I had noticed I was becoming increasingly  fatigued I no longer had the energy to complete a workout or stay up and dance the night away. I was taking every opportunity to try and sleep, but with no restorative effects.
By November 2012, I began having drenching night sweats. They started sporadically but were soon a nightly occurrence, which was both embarrassing, uncomfortable and just a pure inconvenience. Along with irregular periods and stomach cramps I headed to the UK for further investigation. After various blood tests and examinations I was diagnosed and began taking medication for both Polycystic Ovarian Syndrome and Hypothyroidism, and was able to put many of my symptoms down to this. As many more months passed, although both of these conditions stabilised, my list of symptoms were ever growing. Doctors had ruled out further suspected premature ovarian failure and I was still non the wiser and no closer to a confirmed diagnosis.I moved back to the UK and the investigations continued. I was no longer the active, energetic and healthy young women I had been. I had severe exhaustion, weight-loss, tremors, bladder dysfunction, cognitive Mal-function, joint pain, and digestive problems. These are just a handful of the symptoms I now suffer with and are a daily occurrence.
Between the summer and winter of 2013, I had made numerous emergency visits to A&E with chest pains, and other infections needing IV antibiotic treatments, but I had no idea why this was happening to me. I had enlarged lymph-nodes and my immune system had become extremely suppressed. During many hospital admissions, I was checked for well known foreign bacterial infections and was seen by an array of specialist consultants. These included immunologists, neurologists, infectious diseases specialists and haematologists. I was thought to have lymphoma cancer at one point and underwent PET-CT scans, ultrasounds, and extensive blood tests. All of my test results were coming back normal, but I was still very unwell.
By this point, I had to resign from my job, I lost friends and much of my life. I spent most of my time sitting or sleeping at home, due to the sheer pain and debilitating effects the illness was having on my body. Doctors were baffled and I was still searching for answers. I clearly remember sitting in a consultants office and being told ‘I really don’t think there is anything else we can do for you’. At this point I am desperately trying to hold back the tears, but the flood gates well and truly opened. In response, firstly I sat in shock, and then I continued to fight for my health. I explained that no one becomes this sick for no reason, and no matter wether or not they are willing to support me, I would continue to search for answers and I would eventually discover the root cause of my illness.
I had read about Lyme Disease online and although I mentioned this repeatedly to medics, I was always told it was ‘way down on the list’, even though they could offer no other explanation for the obvious deterioration in my health. I was suffering greatly on a daily basis, but doctors continued to look at me as if I was crazy, offering me counselling and told me I should just head back to work. If only!
I spent £4000 on further investigations and had my blood sent to America for extensive lab tests. Four weeks later my results arrived. I tested highly positive for Lyme Disease. There was such a sense of relief to finally have a diagnosis and some proof that it wasn’t all in my head. I assumed that now I had some answers, that getting the treatment I required would be easy, but I couldn’t have been more wrong.

The NHS know very little about the the complexities of Lyme Disease and Co-infections. They are not aware how to treat the disease effectively and for long term results. Throughout the UK, doctors believe that treatment is quick and easy, when in fact its the complete opposite. It is only effectively treated if detected in the initial stages of contracting the disease. Chronic Lyme, causes havoc in the human body, and there is nothing simple or quick about the treatment.

Over the next few months I continued to research as I soon discovered that knowledge is power when you are fighting for your health. My family and friends have supported me both emotionally and financially by helping me to fundraise for treatment. This has enabled me to go to a specialist clinic in California, USA to begin my journey to recovery. I would like to emphasise that without the tireless efforts of others helping me, this treatment in California would not be possible and my situation would be very different. To finally meet with Lyme literate doctors is so reassuring, especially after having been considerably let down by the medical system in the UK. I have began an intensive treatment programme which consists of both IV and oral antibiotics, herbal supplements, immune and nutritional support and a very restricted diet. In addition to Lyme I have also been diagnosed with two tick borne co-infections, Bartonella and Babesiosis, both of which need specific and long term treatment.

The money that has been so generously donated to date, has allowed me to book my first eight weeks of medication at the clinic, as well as cover my flights, hotel and food costs. I will need to continue oral medication when I return to the UK and at some point return to California for further treatment and alternative therapies. My estimated costs long term are over £30,000 and the aim is to become symptom free eventually, with a prognosis of remission. I will not be able to work for the foreseeable future and for that reason my fundraising will be on-going in order to ensure I don’t have to stop treatment, as this will be detrimental to my recovery.

I am doing my best to remain positive, and just be grateful that I am being given the opportunity to beat Lyme Disease and that I am still alive. I will not give up without a fight. I will take all I have learnt from these unfortunate circumstances and do my best to raise awarness throughout the UK of this horrific disease.  I will continue to help and support others suffering, and together we will ‘bite back’ against Lyme.

I would like to take this opportunity to thank every single person who has given their time, words of support or donations to simply save my life.

http://www.biteback4chantelle.co.uk / chantellefightslyme.wordpress.com

 

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4 Comments

  1. Thank you for all the work you are doing with this blog. I’ve recently been talking with some Lyme patients in the UK, and I think your work could be of great help to them. I’d love to learn more about your experience.

  2. Hi! I like your spirit. Can you tell me please how much better are you feeling after the IV antibiotic cocktails? Are you planning to keep taking ABX for all your life? Aren’t you concerned about the risks associated with the long term use of ABX treatments? Are you a vegetarian/vegan? Did you manage to take your life back from this terrible disease, I mean are you symptom free now?
    Best of luck and may you continue to keep up the fight!
    Adrian (Neuroborreliosis now, start of Lyme with EM-Erythema Migrans was 7 years ago).

    • Hi Adrian, Thanks so much for your message and I apologise for the delay in responding, Lyme life is never straight forward is it! I personally respond well to IV antibiotics, but due to genetic complications my liver isn’t always happy with them! I struggle to rid of toxins form both medication and die off, so often breaks are needed in-between medications. I think with any treatment comes risks and I suppose each individual has to outweigh the pro and cons. For me not treating is not an option. After the first 14 months of not treating I felt at deaths door and I refuse to risk my life and go back to that point. I work with my doctor to also focus on the natural medicine I can do along side the antibiotics and that in my eyes is essential. This is part of the reason I chose Gordon Medical Associates for my treatment. They approach from all angles and support the whole body. I have been following a gluten free, sugar free and dairy free Diet since the start of treatment, and in April this year I added the FODMAPS diet too. Just recently I have had an added diagnosis of Porphyria which will change my diet slightly, mostly as I have to increase carbohydrates and glucose. I will however continue to keep my diet as clean and nutritious as possible and the best for my recovery. I am still symptomatic but making huge progress compared with the days prior to treatment. Take care and don’t give up the fight. Chantelle x

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