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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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” 

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