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.

IMG_2219

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

 

Advertisements

Part 1… Treatment Update from California

As you know my current predicament with Chronic Lyme Disease has brought me back to California earlier this year (March 2015) and I can’t believe I am still here! Yes thats right, just over 6 months in this sunny side of the world. It is still very surreal and sometimes I literally sit and say out loud ‘I am actually in California’! It has been a long trip, far longer than anticipated and it gets lonely here being thousands of miles from family and friends. I am homesick without question, and feel very much out of my comfort zone, but I have to just take one day at a time and Skype everyone back home ofter to ensure I don’t completely loose the plot!

My body feels massively overwhelmed with its current ‘issues’, and trust me there are a lot, like more issues than Vogue! It is a challenge to treat so many problems at any great speed. Things have to be addressed layer by layer and with such detail. Antibiotic treatment was really making great changes in my body, my energy levels and clarity of thought was improving and both the Doctor and I felt as if progress was consistent and the levels of infections were decreasing. Then bang! Another surprise spanner in the works… A virus! In mid June I had a 3 day bout of extra symptoms on top of my usual ever growing list. At first I was unsure if it was a herxheimer reaction to my medication which was treating the infections or a toxic build up from the die off, as this can be an ongoing problem for me and puts strain on my organs. As the following week passed the Doctor had to take me off my current antibiotic medication as my body needed to change focus to fighting the virus as this was only going to slow treatment down or cause complications if it continued. I felt disheartened at this and it felt like another ‘1 step forward 3 steps back’, a bit like a cha cha cha without the excitement and grace! It is unsure how the virus was transmitted. It could have been through something as simple as taking the bus to the medical clinic as I have such a suppressed immune system, but we now feel it was more likely from a mosquito. I cover myself in insect repellant daily, but obviously I was a tasty target for this particular flying beast. It was a real reminder that things can change in an instance and no matter how vigilant you are sometimes it is just avoidable. Over the 2 months that followed, things started to go down hill. It felt like the virus had really taken hold of my body and this was this causing increased levels of pain throughout, which were escalating rapidly . In addition the reduction of treatment for my other bacterial infections meant that these opportunistic bugs were thriving, not exactly the situation I was hoping for!

In mid August, pain reached new heights and I couldn’t get the level of pain under control. The pressure in my head was unbearable, I had a fluctuating temperature, vomiting, face palsy, tingling and numbness down one side of my body and dizziness. I felt severely exhausted although I was literally continually horizontal, sleeping the hours away! On the 14th August, I had no choice but to make my way to the emergency room, I was sure I couldn’t continue like this over night with symptoms showing no signs of slowing down, tears were strolling down my cheeks.

Waiting it out in the ER with a warm blanket and a sick bucket.

Waiting it out in the ER with a warm blanket and a sick bucket.

I made my way to a local hospital and after a triage assessment, blood tests and a 5 hour wait I was eventually seen my the main consultant doctor on duty. I was immediately put on fluids to rehydrate from all the vomiting and anti-emetics to stop the nausea and sickness. I was given shots of pain medication and within the hour I felt completely wiped out and on another planet! The medication made me feel almost drunk, but without that happy feeling! I spent the next 3 – 4 hours drifting in and out of sleep as the medicine got to work. Later that evening a wonderful friend Katherine, came to be with me in the hospital. She has been a great support since we first met in 2013, and due to her daughter being greatly affected by Lyme Disease, she is a world of knowledge and support. It was so comforting and helpful to have her by my side, especially as I became so drowsy I was struggling to communicate with the doctors and nurses, as well as my family back home. The doctor kept a close eye on me, and his primary concern was that I may have had a mild stroke, due to the droopy eye, face palsy and decreased sensation down my left arm and leg.

Hospital Bed Selfie!

Hospital Bed Selfie!

I was admitted into a ward and repeat bloods were run and a CT scan too. My bloods revealed I had very low levels of potassium, most likely caused by the increased vomiting over the previous few days and potentially the on-going use of antibiotics. Potassium is a mineral found at large inside the cells within the body and if levels reach a dangerously low range it can cause your heart to stop. I was immediatly prescribed potassium and given this every few hours by IV throughout the night and the following morning until my blood levels and electrolytes began to stabilise. I was given the all clear from a potential stroke and the diagnosis was viral encephalitis, inflammation of the brain! I only had to stay in the hospital one night and was gladly discharged within 24 hours. I went back home and continue to sleep, take meds and run fluids through my line. It was all more drama than I needed, but the treatment I received in the hospital helped to control the pain and symptoms.

By Monday I was able to communicate with my Lyme Doctor and begin more specific treatment for the virus. I was put on ‘Byron White A-V drops’, a potent concoction, which even one drop caused a painful reaction. Over the next few weeks I had to gradually increase the drops until I was taking them twice a day. This literally floored me initially, but I knew I had to persevere to treat and reduce the viral load.  Over time my level of toleration to this treatment grew and I started to notice a reduction in the viral symptoms and load. If only that was it! As those symptoms decreased, it then made way for all of the bacterial infections which had been escalating in the background to surface!

Thankyou for stopping by to read this new update.

To ensue this post isn’t text overload it will be continued in ‘Part 2’!

 

California…Round Two

On the 16th March I set off on a big bird (plane) for my next course of intensive medical treatment over in California to help my ongoing fight against Chronic Lyme Disease. I had no idea just two months earlier that I would need to return to the specialist clinic, nor that I had to once again think about raising ridiculous amounts of money again to do so. I had been deteriorating more noticeably toward the end of 2014 and by February 2015 I knew I really didn’t have any other option but to access more treatment overseas. The oral antibiotics I was having to ship over to the UK were not hitting the bugs hard enough and I wasn’t prepared to risk a complete relapse right back to square one. To be in the UK and have no intravenous antibiotics was hindering my progress massively and I could feel myself slipping more and more into the grip of the multiple infections; Lyme, Babesia, Bartonella and Mycoplasma.

The prospect of returning to California was a daunting one for many reasons. I knew what this type of treatment involved and how it was very much going to make me feel worse before better. I would also be flying solo for the trip this time too. I have got used to me, myself and I for company in these periods of illness, but there is only so much talking to the walls you can do! I also just felt an overwhelming amount of stress just thinking about trying to sort out the financial logistics of it all. This illness is more expensive than I can even put into words. You literally haemorrhage money and this is no exaggeration! I have spent approximately £35,000 so far trying to get healed and there often doesn’t seem to be a sign of the spending stopping. A working individual on a good salary would struggle to find this amount of money as ‘spare’, let alone when you are too sick to work and therefore have no income.

For about 4 weeks prior to my departure I feel like I cried almost every day…who knew one human could shed quite so many tears! The pain, the stress and the constant worry just seemed never ending. It was not just the forthcoming trip that made me anxious, but the continuos fight for survival and never knowing if and when the battle would end. This illness doesn’t give you a time frame or an end date. I can only describe my body at times like a shoe lace; when its tatty, worn and almost thread-bare and you don’t know if its going to last another day or just snap when you least expect it… and lets face it, there really is never a good time for a shoe lace to break! Lyme disease is inconvenient, intrusive, controlling and just one giant cloud of uncertainty. We learn all sorts of life skills as we grow up but nothing can prepare you for feeling like a hostage in your own body. This is Lyme, day in, day out.

With all this difficulty aside, I knew I had to get a grip and ‘crack on’! I would be flying to the US one way or another and I had to keep my mental strength in tact to enable me to do so. I wasn’t prepared to give up or be negative, this was just not an option. I wrote lists after lists and got to work kick starting my second fundraising campaign. As much as every bone in my body hates to ask for financial support I just don’t have a choice. Without fundraising there is no way I could access the kind of money needed for this type of medicine. Things started to take shape and before I knew it I had booked my flights and accommodation and dusted of my suitcase. It was happening! USA… Round 2.

I arrived in California completely exhausted, full of a head cold and barely able to string a sentence together! I am surprised I actually managed to arrive in one piece! I literally dumped my bags, power showered off the travel dirt and lay horizontal for the next 10 hours! Sleep is never to be underestimated, sick or not! I had a day to settle, unpack and get my head together for the next stage of treatment. I was ridiculously nervous but at the same time just so relieved to know I was only 24 hours away from some productive help towards getting my life back. I am beyond grateful to be able to access this treatment and I know without it my future would be merely existing or worse death.

My current fundraising page is very much an on going project and I just continually hope that I will somehow be able to raise the needed funds for treatment. Failing to do so doesn’t feel like an option, so I cling onto every bit of hope and believe that things will work out one way or another. For anyone struggling in any part of life right now my words of wisdom to you would be to believe that things will work out, and always make sure your dreams are bigger than your fears.

“Believe in yourself and all that you are…

Know that there is something inside of you that is greater than any obstacle”.

If any of you reading this are able to support my fundraising in any way at all please know that every penny is truly appreciated and a massive help. No donation is too small and would contribute to my journey in fighting for a healthy future.

Thanks for reading and be sure to subscribe to my blog if you would like to receive notifications of new updates and progress reports.

Much Love, Chantelle Xx

Lyme Poster jpeg