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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July – August 2014

imageI begin with looking back to the summer months this year as my treatment continued. I was put on a number of different antibiotics as my infection load was still very high and I was still battling Lyme and co-infections. This included Doxycycline, Septra, Malarone, Tinidazole and Valtrex. Although antibiotics were key, the herbals have continued to play a huge part in my protocol too. I have always been aware to keep the balance of herbs in the protocol as I feel they have the power to really heal the body in so many ways. I also trust that they help to un-do the detrimental effects of long term antibiotic use. One of the most difficult parts of this disease is the fact it is such a long term journey to recovery, and there is no guarantee that each medicine I try will work. I have noticed whilst taking each medicine, that it often seems to have the desired effect on the infection it is targeting, but then the remaining symptoms of others infections tend to escalate. Its like you can never catch up! It is also not possible for each antibiotic to be able to treat all infections, or to take too many at once, as the body and more importantly the liver just gets totally overloaded. The toxin load can be so dangerous and already being aware that my genetic make-up doesn’t make it simple for my body to detox, I have had to take treatment slow and steady. Doxycycline & Tinidazole: I was on high dose of Doxycycline for a long period over the summer and this has its own complications. Firstly at such a high dose it makes the skin extremely sensitive to the sun so it was a shady seat under the garden umbrella for me! On a more complex note, when you treat Lyme Disease at such a late stage, it becomes disseminated throughout the body and the spirochetes play a game of hide and seek. With the infections spread from the blood to a variety of organs and joints of the body, it makes it so difficult to try and combat. When treated with Doxy it continues to try and avoid destruction. Like a chameleon it can change formation and takes on a cyst structure, protecting itself from the medication. This means because of the bacterias behaviour under attack, I had to take an additional medicine at the same time called Tindiazole. This impairs bacterial enzymes and removes the biofilms which can block both the immune system and the antibiotics. Septra DS: This is a medicine that has been used for years to treat a host of actute and chronic infections. I was mainly targeting the Bartonella infection with this. My symptoms with this infection have been debilitating headaches, light sensitivity, restlessness, back pain, and what I can only describe as a more heightened sense of irritability and often very emotional state. I feel like the infection has the ability to really have an effect on someones mental state and whilst treating this I definitely felt on edge and more irattional. I have previously tried Rifampin for this co-infection, but as mentioned in previous posts my reactions to this were much worse than a herx reaction. My body could just not tolerate this medicine at all and it even landed me in hospital. Malarone: Malarone is more commonly known in both the treatment and prevention of Malaria. This is a combination of two main anti-parisitic ingredients atovaquone and proguanil hydrochloride. It is used in the treatment of Babesia. This co-infeciton is a protozoal parasitic infection, not a bacterial one like many other of the tick-bourne infections. Malarone and Mepron are two of the primary medications used in the treatment of Babesia, and the choice to go with Malarone, was purely down to it being marginally less expensive as my treatment is till being self funded with no support or medication being issued by the NHS. Whilst being on all of the above mentioned antibiotics, it has been really important that I had routine liver function tests and full blood count. This is to ensure there is no detrimental effects from taking the medicines, just the zapping of persistent bugs that have invaded my body! So, as it has been a while since I last posted this is just select information as a start to update you all. I have so much to tell you, but I don’t want to hit the information overload button! I will continue to discuss medication and the highs and lows of lyme life in more posts to follow. Thanks for reading and for continually supporting me on this journey back to good health. I would not have the strength to keep fighting on some days without this support network. It means the world. There will be life beyond Lyme Disease and I will discover it. Big Love, Chantelle x

“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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Reflecting in the Home-Land

I know I am still sick but this past week since being back home from the USA, I just feel a massive amount of determination to not let this disease win. Right now I am so grateful for even the simple things in life and I just feel lucky to be alive and kicking even if I am still quite broken! The support I have received from people has been incredible, every message however small really helps to keep me going.

On the other side of the coin let me share with you that becoming so ill turns your world upside down. When you are unable to socialise or work you soon realise before you know it that you have lost more than a handful of friends. I am still not sure wether this is because people don’t know how to deal with this type of chronic illness or because they can’t understand how someone can maybe look well and still be too sick to party. That’s life of an invisible illness. Apart from the weight loss due to an additional H.pylori infection which has massively effected my GI tract, ‘I look well’. I suppose it’s times like this when you find out who your real friends are. Some you lose and some you have to give away. I have been both shocked and saddened at this reality, especially when during this time one longs for company. This illness is truly isolating. I don’t want a pity party or friendships out of guilt, I am just feeling reflective and am stepping out of he box and accepting that those who walked out of my life made room for all the lovely people who have walked in, what more could I ask for. It makes me happy to see people progressing with there life, but I am not going to lie there are times when all it takes is one more fun adventure photo or a new baby announcement to start the tears rolling. I feel like my life has hit pause whilst everyone else is on fast forward. Who knows when the play button will be pushed or how quickly I will catch up on life. When will I be well enough to build a career and follow my dreams? So many questions and unfortunately not many answers. That is the nature of this illness, so un-predictable, a world of the un-known.

On a positive note I also feel like I have gained a huge amount of support and guidance from a new group of people, an online community of other Lyme sufferers, also known as ‘Lymies’! Believe it or not we don’t just sit in a state of misery and mourn our past lives, well not all of he time! In fact many feel motivated to fight this disease, to help others unravel the complexities of diagnosis and treatment, and to do our best to raise awareness of this world wide problem. By using the internet sufferers can be connected from the comfort of their homes and realise that we don’t have to be alone. I have even had the chance to meet up with some of these inspiring people, even if it has been sitting opposite each other in a medical environment getting ‘prodded and poked’ with needles! I am happy to say I have also made some really special friends globally, that I know will last beyond my life with Lyme. Just imagine the mahoooosive party when we are all celebrating the return of our health, my excited face will be off the scale!

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