I made it home…finally!

Back in November last year (2015), it was finally time to head back the UK after a long 8 months in California having intensive medical treatment for this Chronic and life alliterating  illness; Lyme Disease. Packing was a mission to say the least, with approximately 20 kg of Medication and IV supplies! There were spreadsheets, to-do lists, medical letters covering me ‘fit to fly’ and forms to clear me through customs for over staying my US Visa requirements and to explain why I had this ginormous stash of meds! With so much medicine to packing it was like a strategic game of real life Tetris, removal of excess packaging, twisting, turning, unpacking and repacking until it all fit in and my luggage was within the weight limit! Two large suitcases, a smaller carry on case, a backpack full to the brim and of course a handbag with everything in it but the kitchen sink, I flew home.

 

It was a difficult travel schedule back to home turf with the physical pain, and lack of sleep, but the endorphins were flowing just knowing I was on route home and I powered through. I felt such a sense of relief that I was going to be in the same time zone as my family and close friends again, i just faced the travel as another moment of mind over matter. Unfortunately nausea got the better of me during the plane journey home and I was ‘at one’ with the porcelain bowl on multiple occasions. Let me tell you being sick in an aeroplane toilet cubicle is awkward! There is barely enough room to turn around in there let alone lean over! I was trying to casually prop my self up holding on to the wall, for obvious reasons not wanting to touch the toilet and accidently hit the flush button, I literally thought my head was going to be sucked into oblivion! Needless to say I survived both the toilet flush and the plane ride and landed safely, a little dishevelled but in one piece!

The final 2 months of my California stay, I started back up with a full regime of IV antibiotics; Ceftriaxone, Metronidazole and Azithromycin. This ‘triple threat’ combination of medicines were given to me in a pulsing regime of 5 days on 2 days off. These are three particular antibiotics commonly used to treat Lyme and Co-infections. Herxing was really tough at times, but over-all  I was able to see some much needed improvements in this last stretch.

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Meds, meds & more meds!

 

Although of course I am so happy to be home in England, I would be lying if I said that being so far away from the clinic was easy. Not having access to the specialists treatments makes everything that much harder and recovery that bit longer. I also now miss greatly the special friends that I have made through the clinic and at the various places I found welcoming homes to rest my head. I have certainly made some friends for life through this ordeal (both human & hound!) and for that I am forever grateful. I continue to have regular Skype appointments with my Doctor from a distance and medicine is shipped over and continued to be paid for out of pocket. I am now totalling spends of over £65,000 since getting sick with Lyme and the payout is showing no signs of stopping just yet. The financial burden scares me like crazy and does make me worry about my future. I am 31 and now have no savings left, let alone a house or a job! I at least have shed loads of determination!

It frustrates me that I can’t access even the basic antibiotic treatment from the UK via the NHS that I require in order to heal. I have also realised that the chances of getting empathy and understanding from the medical system here anytime soon also remains slim. Patients should NOT be forced to travel great distances or spend extortionate amounts of money on fighting this disease. I think access to medical treatment is a human right, especially when the country is capable and could provide the majority of the basic medication should they wish to educate themselves more on this crippling disease and change the treatment guidelines. I still don’t understand that when it is so obvious that this disease is causing havoc in my entire body that they still persevere to deny or accept a diagnosis of Lyme Disease. I have positive laboratory results for Lyme (Borrelia Burgdoferi) from the US and it is like they think I am enjoying this journey from hell! I am literally fighting for my health and fighting a medical system who are covering up what could potentially be an epidemic. I believe there are significant numbers of people who have been potenitally misdiagnosed or undiagnosed. From recent research, it even suggests that Lyme could be the root cause of illness’ such as ME, MS and even Alzheimer’s. I feel like there is almost a conspiracy to cover up this up as they know deep down the problem is far bigger than anything they understand or can maybe afford to treat. It is without a doubt that the treatment guidelines in the UK need drastically reassessing because as long as patients in the UK are being denied treatment for Chronic Lyme Disease than this country is essentially playing Russian Roulette with human lives.

Thankyou for reading my update on Lyme life and I please ask if you wouldn’t mind taking a few minutes to click the following link and sign the current UK Government and Parliament Lyme petition, it would be appreciated by all who suffer from Lyme in the UK.

https://petition.parliament.uk/petitions/113475Please Click Here.

This petition is to request the development of more accurate NHS Lyme tests and effective treatment protocols. This needs to get a minimum of 10,000 signatures in order for the government to respond and consider this for debate at Parliament. Two minutes of your time could literally save many years of someones life.

Remember… Little Tick, Big Problem! Prevention is better than cure.

Much Love and Happy New Year, may your 2016 be health, happy and full of adventure. Cx

 

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Whatever you do you have to keep moving and never ever give up…

Hello! It has been so long since I have posted a blog on here, and I am gearing up to updating you all with my current medical ‘status’ soon I promise! It is not that I haven’t had anything to update you with, it is the complete opposite! It has been one crazy ride this past 6 months and I haven’t known where to start to put this experience into words, or really had the mentally capacity to do so! My body right now is beyond complicated!

This is just a brief post as I start a new week with some new positive thinking as I try and keep myself and others going through whatever battle they also may be facing…

I have come to realise that success isn’t measured by just what you accomplish in life, but also how you can inspire and support others. I will keep fighting this battle, not only for myself but for all of you who suffer too. Wether this be from Lyme Disease or another chronic, debilitating and often invisible illness. I want to inspire and motivate people to hang on that bit longer, to fight that much harder and to become mentally stronger when you feel at your weakest. I want to hear someone say ‘because of you I didn’t give up’. Keep believing anything is possible and whatever you do never ever give up hope.

I love this quote by Martin Luther King:

‘If you can’t fly then run.

If you can’t run then walk.

If you can’t walk then crawl, but whatever you do you have to keep moving.”

Right now I would be lying if I didn’t say I feel physically and mentally knocked down by this illness, but I’m trying to move with it and keep changing my perspective. I am just in a new and temporary position/situation, I will take it lying down (literally), but I will roll over and look at the stars until the next phase begins. I’ll do my best to find a positive in all these challenging situations and I WILL get through these days. They are the stepping stones to my future, my destiny and to better health. I can still breathe, see and laugh. I can feel loved by my family and friends and although I can’t currently dance with my feet, I can still dance in my dreams, and thats something right?

I’ll be back soon with info on my treatment and until then remember to make the most of everyday, make it count and remember life isn’t what comes to you, its what you bring to it.

Much love always, Chantelle  xXx

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PICC Line

Two days after arriving in California I headed to the hospital to get a PICC Line inserted. A PICC is a Peripherally Inserted Central Catheter. It is a thin tube which is inserted into a large vein in the upper arm and this is then threaded into another vein that leads to the heart. The PICC line can be used over and over again to  administer antibiotic medications, nutritional supplements and also for blood draws. When needing multiple intravenous medications daily this is often the next step as having needles inserted daily becomes painful and also veins begin to fail. During my first trip for treatment my veins became very problematic and this was just another layer of stress to add to what was already an erupting volcano of chaos!

There are of course risks with having this access line put in, but I feel in my case the benefits far out weigh the risks right now. The procedure itself wasn’t too bad. Luckily I had the support of a friend of mine who was also in the US getting treatment for Lyme. We met through an online Lyme support group but she has become a true friend and support to me daily and our similarities go beyond life with lyme. We are both the same age, have big dreams and are grabbing onto all treatment opportunities in the hope to achieve remission. To have her and her mum by my side was just such a huge relief and comfort too. The hospital was really efficient and before I knew it I was in my glamorous gown and cap and ready to be wheeled into theatre. The doctors and nurses were good at making conversation and distracting me from the procedure.  It didn’t take very long and insertion was not really that painful either. The area on the selected arm was numbed and carefully disinfected and then the only small pain was what I would describe as a hard pinch and the rest was pretty painless.  The line was inserted using an X-ray as a guide to ensure it was correctly placed and not touching the heart.  It was not long before I was wheeled back out of theatre with my new ‘accessory’, it was all a bit surreal! Later the same day I had increased pain in the arm but this is normal, it was just the medication wearing off and my body adjusting to this new foreign object.

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I felt very aware of my line at first, nervous to catch it or to move my arm too much and disturb the placement. You just have to be very careful, your range of movement is more limited and you can’t lift anything heavy with that arm, but most of the time you forget that it is there. The connecting tubes can neatly coil under a small fabric arm cover and this prevents the line getting pulled or caught in clothes. I was aware at first that people could see it, but I feel used to it now and just know it is part of the process to help me heal and I must just roll with it the programme, so to speak.

Having a PICC line or a Port seemed to be my only options for this next stage of treatment and be more beneficial long term too. For now I accept that it is just part of the process and it is providing reliable access for the medication I need daily. Showering is a palava and the arm can’t be submerged in water. Finding a reliable waterproof sleeve has proven difficult when you have a super skinny upper arm but with added strapping, cling film and medical tape I am just about managing! I have the dressings changed weekly at the clinic and the insertion area carefully cleaned in a sterile environment to reduce the risk of infection. Mixing and administering medication is becoming part of a daily routine and pretty much my full time job! I have to keep a track of ordering supplies and medications and I rely on multiple lists and spreadsheets as an extra brain! Sometimes it can all feel quite overwhelming but I know I must stay strong for getting through this difficult time now will allow me a future.


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Keep your eyes peeled for the next instalment of my journey in the Lyme light where I will be giving you the low down on the past four weeks of treatment and life so far on this side of the pond.

Thanks for reading and for your continuous support.

Chantelle xx

2015 Continues…

February and March continued to be both challenging months: Symptom central and yet more doctors appointments. It also saw the start of my new fundraising campaign for this on-going and madly expensive medical treatment.

March brought around my first A&E trip of 2015… I had huge reservations about going, as from previous experiences I know there’s never much they can do to help me. They have no understanding of this disease nor the impact that it has had on my body.
I always get approached the same response as I tell my story and get passed around the various nurses and doctors… “What’s Lyme Disease? How do you spell that like the fruit?” I can’t blame the individuals specifically as it’s not their fault that they have not been educated sufficiently about this disease, but never the less its ridiculous and wrong that they are not taught about this matter. Some medical professionals have been introduced to the basics but unfortunately, this has been taught using old research, inaccurate testing methods and the UK’s Lyme treatment guidelines, which are flawed like a book with too many missing pages. The vital bits of information are no-where to be seen, you only get half the story and there doesn’t seem to be a final closing chapter. As a patient you are left with a cliff hanger, not sure of where to turn or who you can trust, not knowing how your story will end.

I began to accept the fact that I was not going to get any help in the UK, but at times you have no choice but to visit the GP, especially when symptoms spiral out of control and you just simply need help. When this happens I am never able to see the same doctor, so once again I have to begin by filling them in on the last few years of my life with Lyme and of course I am expected to do this in a 5 minute appointment slot! An experience this time round I see yet another unfamiliar Doctor, the clock is ticking, and they are looking as baffled as always. They continue to look at both me and their computer screen even more confused than ever…They have no idea why my skin has turned a bright shade of red and stinging like I have been burnt. They finish up by telling me that they have lost my blood tests for the third time and that they still won’t be able to give me any of the medication I need. I get frustrated, more emotional and I feel like I am almost begging for help and I am once again disappointed.

The painful burning skin episode!

The painful burning skin episode!

A&E proved a similarly destructive experience, causing more stress than comfort and I was still non the wiser to why a sudden increase in pain. I try and avoid going to hospital at all costs, especially at 10pm on a weekend. After developing a surge of chest pains and strange heart palpitations, I thought it best to be safe than sorry. Complications of Lyme Disease include heart problems such as Tachycardia and Myocarditis, so I just wasn’t prepared to take the risk. I had both my bloods taken and an ECG performed. It didn’t come back completely normal, but due to their limited knowledge in Lyme I was just told I wasn’t having a heart attack so I was safe to go home. I also randomly got told by a doctor at the hospital that “I look too well to have Pneumonia”, bearing in mind I didn’t go in there with symptoms of this nor ever thinking this could be a possibility! It proved to be yet another insightful experience I would rather forget, and I finally crawled into bed at 4am exhausted and still having chest pains!

As some of you reading this may already know I have had to re-launch a new fundraiser for continuing treatment in the USA. Thanks to such a supportive network of family and friends who contributed to my initial fundraising page, I was able to travel to a specialised clinic in California for almost 4 months. There I received further diagnostic testing and intensive medical treatment, from which I made noticeable progress. My treatment is on-going, with both oral antibiotics and herbal supplements, of which I am still self funding. I have already spent £30,000 – £35,000 on medical tests, treatments and my first trip to the USA clinic. I have seen so many physical and neurological signs of improvement throughout the past year, but there has been a recent plateau in my progress.

This fundraiser is allowing me to return to the clinic and continue with ’round 2’ of intensive medical treatment, which is vitally important for my recovery from this debilitating illness. The NHS continue to have severe difficulty understanding or treating this disease and without the intravenous antibiotics and supportive treatment therapies readily available to me in the UK, my recovery is compromised greatly.

I am so determined to fight this disease and with the help of donations and the Lyme literate doctors in the USA, I really do have a great chance, not to mention hope. Treatment is a long and gruelling process, but I keep in mind the end goal of becoming symptom free and with a prognosis of remission.

You can visit my current fundraising page via the YouCaring site here or via my main website http://www.biteback4chantelle.co.uk
I am still very much in need of donations to enable me to stay in the US and receive medical treatment and continue to ship oral medication to me once I arrive home in the UK. If you are able to help in any way this would be hugely appreciated, no donation is too small.

Now I am back in the US I will be sure to update you all soon with my treatment plan, progress and how things are going state side. This first few weeks has been a tough transition and the medication is hitting hard, so unfortunately I haven’t been up to spending much time on my computer, but I will do soon, promise! Lots to tell you all about my adventures in the ‘Lyme Light’!

Hope you all had a fab Easter weekend…

Much Love and positive thoughts, Chantelle x

The last chapter of 2014

December seemed to completely fly by. Maybe it was all the distraction from the festive movies on the box and decorating the tree! I have always been a huge Christmas fan, maybe I was an elf in my past life who knows?! In an ideal world I would have been joining in with all the fun in the build up to Xmas, but for the second year running I really just didn’t have the energy for it.

I continued to suffer from an array of symptoms and there just didn’t seem to be any signs of relief from these. I was back on the antibiotics, now that the toxic load had decreased, and was starting back on the meds slow, and steady by building doses up little by little. I know that some of my symptoms were increasing due to the herxheimer reaction (die-off) and others were infections which were still determined to thrive in my body, finding me an ideal host! Really not very idea for me at all! This was a difficult time and I was spending increasing amounts of time lying horizontal and feeling generally weak and nauseous. When I am experiencing such exhaustion and pain, even showering becomes a mammoth task and sometimes that might be all I achieve in a day. Other days I am more able and can walk round the block and cook a meal, it is all just a lottery. I never really know form day to day how I am going to feel.

My Lyme Doctor and her team had put their heads together and came up with the next plan of action. It seemed out of all the infections I have it was currently the Lyme Borrelia bacteria and its partner in crime Babesiosis (Babesia) that were causing me the most problems. Babesia is a protozoan parasite that infects the red blood cells and it is extremely persistent. As it enters the red blood cells it matures and divides and within 1-2 weeks of incubation it starts to cause havoc. One of my first noticeable symptoms of this illness was night sweats, which started sporadically, until eventually occurring up to 4 times a night and were drenching in nature. This then escalated to myalgia, nausea, loss of appetite, air hunger and pressure headaches. Last year the GP also discovered I had developed low Iron levels, yet another common symptom of this co-infection and another daily pill to add to the pile! I sometimes still struggle to comprehend that this tiny tick has transmitted such aggressive infections into my body.  It has definitely been a shock to my system both physically and mentally!

The Morphology of Babesia – Photo Source: http://web.stanford.edu

On a more positive note, over Christmas I made it back to Cornwall to see my Family and some friends too. I was happy to be there in person even if the brain fog was making it difficult to be there in full focus. I spent most of my time in the house but made sure I I was wore my novelty santa jumber. I was able to live through the excitement of the festive period through the eyes of my little Nephew which was magical. I also won’t deny that a hug from my Mum and Dad, sometimes can make things feel a whole lot more bearable, even at the age of 30! I also tried to remember that although I am still stick, This Christmas I was in a slightly better place than the year before and finally in treatment and for that I am grateful.