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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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.