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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My Fight For Remission Continues…

It has been 3 months since I arrived in California and began round 2 of magic medicine. I can’t believe I am still here or how quickly time has gone! I had originally booked a return flight for the middle of May, but as time crept up, reality kicked in… I still needed more medicine and this meant time. I was hit with the dilemma of how can I afford to stay in the USA for longer? Fundraising has slowed right down, the hotel was so expensive and I just didn’t have the funds for this as a long term option. The decision to return to the UK may have seemed more affordable, but for treatment this would be detrimental. Leaving California would mean pulling out my PICC line and therefore no more intravenous antibiotics. My infections have progressed to the difficult stages due to the length of time it took for an initial diagnosis and it seems I really don’t respond to the oral medication and therefore this wasn’t really proving an effective option for me. Bearing all this in mind its not surprising I had a full on week of worry and tears trying to work through options and scenarios in my head. Financial and geographical limitations were putting up barriers and the additional stress wasn’t great for my body.  I was then super lucky to find an offer of a room rental in someones house. It came just as I was loosing hope and I grabbed the opportunity with both hands. A kitchen I could finally cook in, this seemed like luxury after creating all sorts of interesting dishes in my hotel room, not easy with dietary restrictions and lack facilities! I also craved that home environment, a sense of normality in the midst of a situation which really didn’t seem all that normal! After all I have travelled over 5,000 miles by myself to get medical help, this didn’t shout normal and was definitley never on my 5 year plan!

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I was soon packed up and moved into my new temporary home… I seemed to have double the luggage I arrived with, medicine and IV supplies galore, kilo bags of epsom salts and not to forget the IV pole! I quickly adjusted into the new environment and know how ever hard it was to still be away from home I had to jeep focused, positive and motivated. No one ever said fighting for remission was going to be an easy one, but its definitely a fight I am willing to take a good shot at.

IV Meds in the hammock! Making the most of a 'better' day & the beautiful californian climate.

IV Meds in the hammock! Making the most of a ‘better’ day & the beautiful californian climate.

My medicine has been changed up on a regular basis since I have been here, research suggests that the infections really respond to this pulsing method long term. Un-like other illness’, Lyme is not text book and there really isn’t a ‘one fits all’ protocol. You can be infected with an array of infections from a tick and not only does this vary  from person to person, but also how the body and immune system cope and responds to these bacteria vary significantly. I often have people ask me ‘what medicine do you take, I have a friend with Lyme and she need to start medication?’. The thing is there is no simple answer, one must consult a Lyme literate doctor, have various lab tests done and be treated based on these results and also on a clinical level too based on current symptoms. My symptoms can change on an hourly basis, let alone a daily basis! I may wake with a crushing headache and pains in my feet, then an hour later I may feel really alert but shaking and by the end of the day I might be hugging the porcelain bowl! Its the most unpredicable situation to be in and it doesn’t make it easy to make any plans! I never really know if it will be a good hour or one where I hit foetal position and just rock! I can look so well from the outside but inside I often feel like I am breaking internally in so many different ways… like my body has been hijacked and there really is a monster inside me!  This for me is particularly frustrating, I can’t see or always understand what is going on inside MY body and yet I have to almost accept that ‘it is what it is’ and just deal with it. I am control freak and it makes me feel ridiculously out of control!

The main intravenous antibiotic medication I have been working with this past few months is Rocephin/Ceftriaxone, Azithromycin and Metronidazole/Flagyl. All of which focus on fighting the different persistent bacterial infections which I have. These are administered sometimes multiple times a day and have multiple side effects and interactions. Its often one medication for one problem and then another to reduce or eliminate the side effects!

The other IV medications I take are Phosphatidylcholine, Glutathione, Colloidal Silver and Myers. The latter is a  nutritional cocktail of high dose Vitamin C, various B Vitamins, Calcium, Magnesium etc. All of which have clear roles in detox,  supporting my immune system and helping me bite back against Lyme and the multiple co-infections.

I also take a daily concoction of probiotics, herbal tablets and tinctures which are a natural and vital part of my protocol. With all these pills, potions and drips it soon fills my day as you can imagine! In addition to medication I am also using food as another avenue of healing. I am currently gluten free, sugar free, dairy free and and following the Low Fodmap Diet. This eliminates high fodmap foods which are poorly absorbed into the small intestine and this helps reduce the abdominal pain, bloating, and bowel problems that have been caused by the infections and medicaitons . By eliminating these short-chain carbohydrates such as Lactose and Sucrose, it helps to eradicate this process of malabsorption and in addition to the other dietary restrictions I am hoping long term this will help to re-program and eventually heal my gut.

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I am really careful about keeping a log of all my medication and symptoms as this allows both the doctor and I to have a more accurate view on how things are going, what may be helping and in some instances what could be making things worse. You really begin to see patterns over time and get a much a clear insight into the flare-ups and also the better days too. I have a notebook which I have used to log every day of treatment since all this began. I recommend this for anyone juggling a difficult health problem and a lot of medication, especially if your brain has become a little more on the foggier side!

The trusty notebook... an insight into Lyme life!

The trusty notebook… an insight into Lyme life!

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

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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

Oh What A Night! Thankyou so much …

*A letter from me to all who contributed to my recent Fundraising Event (12/02/14)*

An evening of ‘Live music, an Auction & Raffle’ @ the Eastney Tavern, Portsmouth.All washed down with good food and beer, and broadcast live on the internet…

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I have just sat here staring at the computer screen trying to think of how I even begin to say ‘thank you’…”the phrase is small and the words are few, but behind them lies a world of appreciation”.

After becoming so un-well, the constant physical and emotional battle has been so difficult. This was not helped by the realisation of the enormity of the recovery journey ahead and the lack of support from the medical system back home in the UK. There became a point where I was questioning if I would even have the opportunity to have the medical care I so desperately needed, this was terrifying. I was not ready to stop living, and nor was I willing to accept that this constant pain would control the rest of my life. I am 29 and I feel as if life as only just begun, apart from when I spot the odd grey hair! Is that too much information!

At first I really was unsure as to wether or not I should begin a fundraising page. Of course no one wants to ask for money, but having had to stop working for almost 8 months now due to this disease, I really had no other choice. The huge sums of money needed for this treatment, is by far more than what people have in their rainy day fund! Coming to the USA for treatment was not a decision that was made lightly, all I knew for certain was that the life changing possibilities with the medical treatment there, really would save my life.

There is no beating around the bush, I simply would not be here making progress had it not been for each and every one of you here tonight. Please know that just by walking through the door of this pub tonight and buying a pint, you are supporting me and my fight against Lyme. So a massive ‘cheers’ to that. I could fill up this whole page with Thankyou’s and it would still not feel like enough!

I am now half way through my intensive treatment programme here in California. There are very difficult times where I may not leave my room for days at a time, but I am already noticing small but very positive changes, which really give me hope. I am being completely honest when I say I will not arrive home at the beginning of April cured, but definitely making progress. This is a complex disease that has attacked the whole of my body, so it’s one step at a time! What I do know for sure is that you are all giving me the best chance of recovery with your constant support. I am truly grateful for everything from the bottom of my heart.

I would like to do a few individual Thankyou’s without sounding like I have just won an Oscar!

Nick & Denise Courtney, Helen Buteux, Chris Moon, my brother in law Paddy Taylor and my two sisters Justine Lewis and Sabrina Taylor … You have gone above and beyond everyday to spread the word about my battle. You all have your own life, jobs and families, but you have all still made time to organise this event and create an online network of communication to help me. My brother Oliver Lewis wishes he could be here tonight but logistics can’t make this possible, but his support has also been never ending. My dad is currently here in America with me doing the ‘carer/dad’ role and unfortunately my mum is in hospital unwell herself…but they have both shown endless love and support now and always.

Thankyou to the talented musicians providing quality tunes this evening; ‘The Milkmen’, ‘The Monkey Butlars’ and ‘Paddy Taylor’. To every individual or business who has donated auction and raffle prizes, to everyone who has taken a few minutes out of there day to send me messages, post me letters and ready my blog! I often feel very isolated from life outside these four walls, so this really keeps me going. Everyone who has donated directly to my fundraising page or who is here tonight really is making a difference. As Tesco supermarket advertises so well ‘every little helps’, it really does.

Ok, I have a tendency to ramble so I should stop now so you can all continue with the vino and the beers…I give you all permission to get ‘merry’ even on a school night!

I will never forget how you have all helped me in some way, and I will never take this for granted.

Thanks a million, lots of love and hugs!

Chantelle xXx

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Mad Money!

As you can see from the title of this post, I am focusing on the financial consequences of having Lyme and co-infections. Not only does your body and brain get hit hard by this disease, it can demolish your bank account too. It’s hard enough realising that medical professionals in the UK could determine your fate when you are struck down with this illness, and personally I can tell you emotionally that this is hard to comprehend, but it doesn’t end there. I was told face-to-face by specialists in the UK, that there was nothing more they could do for me. So what was I meant to do…remain ill for the rest of my life? No way! Those who know me will be fully aware that I have always had a lust for life, ambition and determination, and I would not be prepared to slowly fade away with time.

After extensive research with regards to treatment options, I came to the conclusion that to get any medical help, let alone a chance of a future, I had to come to the USA for treatment…hence I am now in California being seen by a ‘Lyme literate medical doctor’ (LLMD). To enable this trip and the start of a long journey of recovery, I had to set up a fundraising page – https://fundrazr.com/campaigns/3erIe – There is no doubt that without the donated funds, I simply would not be able to have the treatment opportunity that I am having now.

I initially set my fundraising target at £20,000. I thought that this amount would cover one medical trip to California plus monthly medication and supplements once home in the UK for at least 6 months – 1 year. Unfortunately once starting treatment you soon realise how complicated the illness is and the recovery process. There is no set amount of time that one can be given to recover. One person may take 3 years, another may take 10. There are many factors that determine this, for example; how long you have been ill, what co-infections, you may have, not to mention the difficult neurological and gut complications which myself and many other Lyme patients encounter.

Since starting treatment I have also discovered I have 2 “dreaded” genotypes which I explain in more detail in the previous blog post. A basic summary of this is that I am highly sensitive to both environmental toxins as well as the toxins released from this disease especially when I have a ‘die off’ of bacteria. It is scientifically proven that having these genotypes, results in the inability to recover from Lyme with antibiotics alone. In fact my sickness would worsen and my health continue to deteriorate as my body is unable to detox without additional support from supplements and alternative therapies. This gene complication will without a doubt have an effect on the time it takes my body to recover from this illness and methods of detox will in large play a part In the treatment programme.

Last night I sat down and did some all important sums, and I can tell you now, this was not easy with my brain-fog! I feel as if the ‘brain fairies’ snuck in one evening whilst I was sleeping and replaced the content of my head with Play-Doh! No joke! OK back to the maths!

I have kept a weekly log of the costs of coming to America and it has far exceeded my original estimations. The first week was considerably more expensive as expected, as this included travelling to the airport, a nights accommodation at the airport due to my extreme fatigue, return flights, initial consultation costs and a number of medicines and supplements. Oh yeah, and not to mention my un-planned trip to ER! Even with travel insurance there was an excess charge.

For the initial 6 weeks that I have been in the USA, my outgoings have totalled £8237.86

When working out the costs per week, excluding week 1, the average equals £1100.00 per/week. This includes accommodation, food (not cheap when on gluten, sugar and dairy free), taxi to the clinic 3 times a week, hep-lock insertions and IV antibiotic medications and administration kits, blood ozones, IV and oral herbal/nutritional supplements, doctors appointments, and regular and specialist blood tests.

My IV medication has now begun and I need a minimum of 10 weeks of this form of antibiotic and nutritional treatment. This would mean my stay here in California would total 3 months bringing me to the first weekend in April to fly home. Using the average costs worked out above, my 3 month stay here will total £17,000 – give or take a few hundred pounds for an emergency, extra blood tests etc… If my current fundraising page reaches the total of £20,000 I would take home approximately £18,500. This is because the website itself takes a percentage of each donation. All sites do this as I am not a registered charity such as Macmillan or Cancer research. Although this total will just cover this trip here, my treatment by no means is then over. I must continue to pay to have regular phone appointments with my Lyme doctor. This monitoring by a professional doctor is vital when on such large amounts of medication. I must also source supplements and monthly oral antibiotic prescriptions from the USA, as well as feed myself!

I will not be able to return to work for the foreseeable future and this leaves me with huge worries and stresses for what the future holds. To stop treatment after this trip would be so detrimental to my health and I may as well have not even bothered starting if I don’t continue. Each bacterial infection has to be irradicated thoroughly over a long period of time to enable the best chance of becoming symptom free and in remission.

This leads me to now change my total on my fundraising page significantly, and I was keen to share with you this breakdown of costs. I also feel it is only right to account for all the money that has been donated to date. I know when I have donated in the past to many charities I am always intrigued as to see how my donations have contributed to the bigger picture. I am filing and keeping every receipt of all monies regarding this treatment, so I am able to be open, honest and accountable. Money is a difficult subject to discuss, but the fact is my Mum was right, “money trees don’t grow at the bottom of the garden”!

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