On high-alert and feeling toxic! September – November 2014

In my last blog post, I left you with an update as far as August. Things were going fairly well and I was definitely feeling and seeing progress across my body, brain and general well being. This was obviously too good to be true and before I knew it, Wham! I seemed to hit another bump in the long lyme road, and it was for sure another uncomfortable ride!

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So you may be thinking what caused this downturn? Well, although we have no concrete evidence, we think the culprit was a vaccine. I was given this as part of some immunology investigations. Having vaccines with Lyme Disease is without doubt a questionable task, but these tests were important as I needed to see if I had inherited my Mums rare and complex Primary Immune Deficiency, Hypogammaglobulinemia. This causes an abnormally low level of immunoglobulins, the antibodies that help fight infection. Research has shown this can be ‘congenital’, present at birth or ‘acquired’, developed later on in life. It is vital that we determine wether or not I have this as it could effect my chances of recovery from Lyme, and it could mean I have to have regular intravenous immunoglobulins in order to support my bodies immune system.

Ok, so back to the vaccine…Approximately 4 hours after this, I felt very nauseous and lethargic. I headed straight for bed in an attempt to sleep this off and when I woke an hour later, I was experiencing excruciating pain in my shoulder where I had had the injection. Although it is common for pain after any injection, it was my whole shoulder and upper arm not just the insertion site. By early evening I was in so much pain, in floods of tears and unable to move my arm at all. The level of discomfort was off the scale, and I was having to physically support the weight of my arm even in resting position as  the general weight of my arm felt unbearable. I headed straight to my GP where my arm was put in a sling and I was prescribed stronger painkillers and anti-emetics. This was a ‘dead’ vaccine so I really didn’t expect any reaction at all, let alone this!

Within 3-4 days the pain had subsided considerably but I continued to feel totally wiped out, it was almost like I had regressed 6 months. The physical symptoms from Lyme and the Co-infections I was fighting had all seemed to creep back to a much more aggressive level. My night sweats were back with a vengeance, I had air hunger, heart palpitations and the headaches were constant. My adrenal gland function seemed to be playing up too. This can be a common occurence with chronic infection. From having this problem earlier on in the year,  I have become aware of certain symptoms which arise when this is happening. I notice I am a lot more alert in the evening when I should be winding down. I get a real sense of restlessness and almost an internal jitter. My sleep feels completely not restorative and I often feel like a zombie until about lunch time, not to mention the brain fog! My insomnia also increases and my appetite too. I seem to loose weight although noticeably eating more! You may be aware of the ‘fight or flight’ response, which is a process of the sympathetic nervous system, our bodies reaction to the stress it is under. Its like the body goes into high-alert and the hormones of the adrenals contribute to this process.

So with all this going on in my body I was advised by my Lyme doctor to briefly stop my antibiotics while my body had a chance to get to grips with the latest episode! I stayed off these for almost two weeks and then introduced them again one at a time. Unfortunately it was not before long and I was feeling worse again, I was now vomiting, having chest pains and can only describe the feeling as hitting a brick wall. It then became apparent that my liver had also become congested, so I had no choice but to stop all antibiotics, again. I was toxic, literally and it was too dangerous to continue to load my body with medication especially as my faulty detox genes meant I was not able to rid of any of the die off I was experiencing from the antibiotics. I got myself into full on detox mode. I increased my intravenous Vitamin C and Glutathione, had 30 minute epsom salt baths daily, drank copious amounts of lemon water and had regular castor oil liver cleanses. I also continued to take the herbal tinctures and tablets such as Itires, Apo-Hepat and Milk Thistle.

I had to stay off all medications until mid November and I found this really disheartening. All I know is that to rid my body of all these infections I have to preserver with long term antibiotic treatment, so to be told your body is not tolerating it is simply frustrating. With that aside, it wasn’t long before I got my head back in the zone and reminded myself that I needed to stay mentally strong, that this was just a blip and before long I would be back on track. It is not easy trying to be positive day in day out and don’t get me wrong I have my moments! I cry, I feel angry and I ask that rhetorical question ‘Why Me?’ Surely though I wouldn’t be human if I didn’t have these moments and thoughts every now and then. Being continuously ill is not easy. It also didn’t help that my 30th birthday was approaching! I always had expectations and plans for where I would be in life when I turned 30. What I had hoped to have achieved and what my future plans where. Well obviously getting bitten by a tick threw a huge spanner in the works and I could no longer follow a plan. Right now my plan is just to get through each day, just one at a time and do my best to do so with a positive attitude. I always remind myself it could be worse, and it could. I have a roof over my head, a supportive network of family and friends, and a doctor who is trying everything to fix me. At least I have a chance to get better. I am lucky I am still alive and yes, I may be in pain for the majority of that time, but I keep the hope that this won’t be the case forever.

“If you keep hope alive, it will keep you alive” 

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“You look well”… Life with an invisible illness

96% of Chronic Illness is invisible… But just because a persons illness is invisible it doesn’t mean they are. It reminds me of a well known saying ‘never judge a book by its cover’. Looks can be deceiving, and this quote is so fitting when it comes to life with Lyme. Don’t get me wrong, I wouldn’t ever want to look sick. To be honest thank goodness I don’t look like what I have been through, for it definitely wouldn’t make a pretty picture! But at the same time, living through a chronic and complex disease when you ‘look well’ really isn’t easy either. When you step into a doctors surgery or hospital in the UK with Lyme Disease, you are looked down upon and told you must have depression or are seeking attention. I have been clearly asked on more than one occasion, ‘are you unhappy in your life? Would you like to see a counsellor?’. I can’t even begin to explain the hurt and upset that hits you when you hear these words, purely because it is their way of saying to me that this illness doesn’t exist and it must be all in my head. These medical practitioners are the very people I thought I could go to for help, yet help seems to be the very last thing I can get, more like no help at all. This lack of knowledge, ignorance and the neglect surrounding Lyme in a world of modern medicine is pure madness, though ‘we’ the patients are made to feel like we are the mad ones!

image In the last year I have been to A&E on 9 occasions as a result of painful complications from what at the time was an undiagnosed illness. These included chest pains, rectal bleeding, dehydration from continuous nausea and vomiting, kidney and bladder infections and excruciating migraines…this is just to mention just a few! All of which required some sort of treatment or further investigation as an outpatient or through impatient admission, but every occasion felt like a huge battle. Through tears, frustration and massively increased levels of pain, I still had to fight to be heard. I don’t really feel that at any one of these times my feelings were actually taken into consideration. I was flippantly told on one day that it must be Lymphoma Cancer, and other diagnosis ranged from Malaria to bold clots. Months down the line when they were still totally baffled by my symptoms I was then told ‘that there was nothing else they could do to help me’. I eventually had a diagnosis of Lyme Disease after paying out of pocket thousands on investigations and sending my bloods to the USA, but the fight for my health did not end here. It was just another nightmare chapter of which was only just beginning. I thought that not knowing what illness I had was difficult, but to be honest having a diagnosis and being clearly refused treatment is just as much of a struggle. In the eyes of the NHS my illness doesn’t really exist. I sit here now and wonder, how would they would respond being treated in this way. It’s not a great feeling to be ‘given up’ on or to feel like you are wasting a hospital bed, when you feel debilitating pain from head to toe. I once asked a doctor directly, how he would feel if this were happening to him or a member of his family…he was speechless and answered with a shrug of his shoulders. This lack of answer said it all. The fact is if it happened to him or any other doctors, treatment methods would take on a whole different approach. Lyme Disease is just one of many chronic illness’ which is highly misunderstood, not only here in the UK but world wide. There is very little accuracy within the current testing methods available in this country, which as a result means a lack of diagnosis or a highly inaccurate prognosis. Medics are currently unaware of how or if the bacterial infection can be transmitted among other humans, or what the long term consequences are after being bitten and untreated. There are just so many questions, and currently no where to go for the answers.There is no publicised Lyme Disease campaigns that are backed with positive media coverage or celebrity patrons. The few UK charities that do exist are struggling due to limited funds. There is no support for patients or for carers, we remain isolated as we struggle to be heard and acknowledged. This disease is a hidden epidemic and the medical system needs to stop with the denial before more lives are destroyed and even worst lost. People die from the complications of this illness, it suppresses the immune system and therefore your body becomes more susceptible to other infections and virus’s, on top of the multiple ones it is already infected with from the tick bite. There is currently not one clinic in the UK which is set up to deal with the complexities of Lyme or co-infections, Thank goodness for my truly awesome doctor in USA, she really is a superhero…I’m still convinced she has a magic cape hidden somewhere in her office! It’s a real struggle to continue treatment from a distance, away from the safety net of a team of doctors and nurses who really understand tick-borne diseases on a much greater level, but I would rather this long distance help any day, then no help at all. This disease has not only become such a physical strain but it has also become increasingly difficult to deal with on an emotional level too. I turn 30 this year and I can’t help but feel sad for the life I am not able to live. I would love more than anything to go back to work, to succeed and to socialise. The fact is although I am living I feel I am very much not having a life. I am determined though to keep fighting as I don’t want to be defined by this illness. I have always had dreams and aspirations and these are never going to go. I have worked hard my whole life to be something and I’m not prepared to allow a tiny tick to destroy my chances of happiness and to stop me from achieving at least some of my goals. If anything this illness is just going to make me even more determined to fight until I become symptom free and I will then share this hope with others. I finish off today’s post with a quoted paragraph by Medical Doctor, Kenneth Leigner… “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely appreciation or denial of treatment”.

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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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A little bit about me…

Hi and welcome to my very first blog!

I am Chantelle, 29, and have been battling Lyme Disease for the last 14 months. I became unwell whilst working at sea as a stewardess on a classic Motor Yacht Dona Amelia. I have been so lucky to work in the yachting industry and have had a chance to visit some amazing places on my travels.  I loved every minute of my time sailing the seas between idyllic Caribbean islands, but unfortunately in this instance I was faced with trouble in paradise. I first became unwell back in 2012 but was unaware that I had been bitten by a tick. Unfortunately, not only did I contract Lyme Disease from this bite, but I was also infected with two co-infections; Bartonella and Babesia.

As time goes by this disease takes every opportunity to slowly destroy my body in so many ways and has already shown signs of neurological damage.

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To ensure the best chance of recovery from this illness, I must travel to the USA for extensive private medical treatment and therapies to rid my body of the Lyme bacteria and re-boost the immune system.

I can no longer work, so I have been fundraising to pay for my flights, accommodation and treatment at a specialist clinic. It is going to cost me over £20,000 so I can beat this disease and get back to loving, living, life!

Over time I will post on how and when I fell ill, my symptoms and the numerous visits to hospital! I will primarily use this blog to log my journey of recovery from this disease. By sharing my story I hope to keep all my friends and family updated, as well as share my experiences to help others as they also fight Lyme. Online support has been a lifeline for me when I had little knowledge of this medical condition, so I feel it’s only right to help and support others, now and in the future. Chantelle x ⚓️

http://www.biteback4chantelle.co.uk

Bite Back!

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