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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Part 2… Parasites, Porphyria & Osteopenia

Hello again!

Following on from my last post, I continue to update you on the highs and lows of treatment with Lyme disease and its many consequences and complications!

Over the course of my stay here, I have had to consult a new doctor at the clinic due to my increasing problems and complications. I have had some really insightful consultations with this change and in addition to learning so much new information, a fresh pair of eyes on my complex case has been extremely beneficial.

In terms of my viral load, I feel like this is much more under control, but by no means gone. We have had to keep shifting focus as there were still so many other problems to be figured out. I was experiencing more vomiting, more constipation and increased abdominal pain. I was loosing my appetite again, and noticing gall-bladder pain. I had a physical examination by my doctor and he suggested that due to the amount of tenderness across my abdomen, gall bladder and liver that I may in fact be suffering from parasites. This was an initial concern when I first fell ill 3 years ago, as I had been experiencing similar symptoms in addition to weight loss. I have previously had two stool samples sent to testing laboratories both here and in the UK, but they had both come back negative. Thankfully due to the doctors expertise and experience with other patients with similar symptoms, he felt almost sure that the cause of some of this pain had to be parasites. He explained that the type he thought I had doesn’t always show up in the tests. The reason being is that the parasites latch on to the mucus membrane of the small intestine and pretty much cling on for dear life! I was also suffering from low stomach acid and this enabled the parasites to thrive even more inside me! The suspected parasite was the ‘liver fluke’ and the doctor made the decision to start me on some treatment. Within days I was experiencing episodes of constipation. It was explained to me that this might happen and the reason being was because as the parasites begin to die off, they increase in size which can block the flow. They also pump out anaesthesia like chemicals which cause a temporary freeze of the bowel. The Parasite continues to swell and then shreds and is dumped out through the bowel, then causing episodes of diarrhoea. Throughout this period I was excreting multiple eggs and parasites and I couldn’t believe these things had been thriving off my insides for the past 3 years! It actually makes me shiver just thinking about it! Bleugh! I still have one other course of medicine to take for this which is called ‘Alinia’. It is well known pharmaceutical that is used in the treatment of parasitic infections of the intestine. This anti-parasitic agent interferes with substances in the intestine which are allowing the parasites to stay alive. This medication should finish off wiping out the final batches of gut monsters inside me… It better! This medication is costly here in the U.S at $46 per pill! Yes, No joke! With the help of my Doctor we have ordered this prescription from Canada at about one third of this price, but unfortunately it takes 3 weeks to be delivered and go through customs so for now I am just waiting. In addition to that medication I am also now on another antibiotic called ‘Actigall/Ursodo’l. This is to help concentrate the bile through the gallbladder which will help flush it out. This is needed as where the parasites have lived in the bowel they have also crept up and caused some congestion in this area. Nothing is ever simple!

Recently I have also been experiencing particularly difficult sets of days where I just felt much sicker than usual, a consistently ill feeling and bed bound with the pain. There was more nausea, vomiting, muscle weakness, heart palpitations, back pain and what I can only describe as an altered state of mind, sort of on another planet! These are also symptoms I do experience from the Lyme and Co-infections, but not always of such a severity. My Doctor once again had a thought that there may be something else causing this and in the next episode of this type, he requested that I sent a urine sample to the lab. His thought process behind this was suspected AIP – ‘Acute Intermittent Porphyria’. This is a fairly rare condition and due to the fact that the symptoms mimic other conditions it can go un-diagnosed. Although many can be genetically susceptible, only few seem to develop symptoms. It is usually activated by other conditions and in my situation Lyme Disease has done just that. In order to obtain a diagnosis, the urine has to be tested when experiencing an attack. The sample has to be carefully kept at a certain temperature and protected from light, so this meant trying to wee in a tiny pot practically in the dark! I managed to time this well with a suspected attack and as expected my lab tests confirmed, I do have this type of Porphyria. I am still very much getting my head around this new and additional condition and when I have absorbed more about it I will write a separate post with detailed information. When reading about it I am bombarded with science, and this isn’t always that easy to understand or explain. I am currently discussing with my Doctor ways in how I will control the attacks of sudden pain and neurological symptoms. There a variety of ways to help suppress the activity to a certain degree but not stop it entirely. This ranges from yet more dietary changes, some supplements and maybe injections. I am currently treating attacks with IV Glucose fluids and pain medications. I can do the fluids myself through my PICC Line, but long term if the attack is of this severity and I don’t have my PICC line, this would have to be treated in hospital.

As you can understand from reading my blog posts, It is not just Lyme Disease I am now battling its a host of other bacteria, virus’ and medical conditions! Life really has changed dramatically and I am certainly hoping that the list of problems will stop expanding!

In terms of the infection load, the Babesia is really at the forefront currently. I have written about this co-infection previously, but I will re-cap a little as I know all of this is pretty complex. Babesia is a malaria-like protozoan parasite and continues to thrive in my red blood cells. It almost seems invincible! I have been on multiple IV and oral medications and herbs for this and it just won’t shift. I have had periods where I felt like the load had decreased and then all of a sudden its like it multiplies over-night. My doctor often looks at my blood through dark field microscopy, and I have seen with my own eyes the damage and physical formations of this parasite in my red blood cells. It has caused me to have low iron levels, air hunger and huge disturbances in my sleep. I have insomnia, extremely vivid and disturbing nightmares and drenching night sweats. My temperature throughout the day can fluctuate from hot flushes to chills. The Babesia headache for me mostly occurs at the base of my skull and radiates pain down my neck. With all the infections I have, I have literally had some sort of headache continuously for the last 3 years, its ridiculous. Its not often I am found without an ice-pack or a heat pad. On a mental level, this seems to give me increased brain-fog, a feeling of disconnection in my body and a great sense of being overwhelmed. Sometimes the smallest daily tasks of a functioning adult seem like such an enormity. The knock on affect of this can be more tears and anxiety. It can make difficult days seem impossible, but I try and bear in mind that this is the bugs not me!

Last but not least, I focus on my skeleton! Dem bones, dem bones, dem lovely bones! Well in my case some slightly affected bones. I have a lot of physical pain, which has developed since getting sick and its not surprising knowing that the Lyme spirochetes have wiggled there way into my brain and joints! Lyme almost hunts down areas of weakness in the body and heads straight for them to get cosy and cause havoc! With the increased pain in my hip/pelvic area, it made the Doctor and I start to think that there may be some sort of underlying weakness there. I went for a Dexa Bone Scan and the results came back with Osteopenia in the Femoral Necks. These are the long connective bones just below the ball and socket hip joint. My scan revealed the osteopenia and this is basically low bone mineral density. It is not as severe as Osteoporosis but is often a precursor to this. I am hoping that catching it at this stage means I can work with my Doctors to halt any further deterioration. I have also read that it is possible to often reverse this damage with supplements, dietary changes and weight bearing exercise, so fingers crossed.

So, I leave you with all of this information to digest and hopefully this will answer some of your questions as to why I am still so sick, its just such a complex battle. Layers and layers that need un-ravelling and treating and timing is crucial. That being said, I still fully believe I will make it into remission from Lyme eventually and hopefully get all of the other conditions under control. It is not an easy task, but my determination continues to grow.

Much love and as always many thanks for your continued support from around the world.

Chantelle xXx

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!

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

2015 begins and the drama continues…

January has been a complete whirlwind; an unpredictable, rapid and destructive 4 weeks! It has been a challenge and not quite the positive start to a new year that I had hoped. For now, I have given up on the of idea of being able to predict how I will feel in the future, when these days I can’t be of sure how I will feel from the start to end of just one day! This is a complex illness, and needs to be un-ravelled bit by bit. I am always conscious of the bigger picture, but I am aware of the multi layer approach to healing for the long term benefits and chances of remission.

I began the new year with a totally un-invited bout of cold and flu symptoms which persevered for approximately two weeks. It is surprising how much this can knock you down when your body is already fighting so much. I had to halt taking my antibiotics as a die-off on top of this would have just been an overload for my immune system. It was mentally disappointing, as I know how the current infections will take any opportunity to thrive whilst I am not actively treating them with antibiotics. I followed Doctor orders and also kept in mind the words I often heard from my Mum growing up; “Feed a cold and starve a bug”! This was also particularly important as over the past 6 weeks I had began loosing weight again, regardless of consciously trying to increasing my calorie intake. Its hard to know exactly what is causing this, but it is something we are monitoring closely.
On top of this I have been trying to cure another mysterous rash which has covered my chest and back. Four different prescriptions creams later and more baffled GP’s the rash is still here!

Once the cold symptoms were clearing, I started a combination of new medications, Atovaquone (Mepron, Wellvone) and Azithromycin (Zithromax).

Mepron is an antiprotozoal medication that can penetrate the cyst form of Lyme and also treats Babesia. It is a thick, yellow suspension which visually reminds me of poster paint from school art lessons and it is ridiculously expensive. It costs a hefty £500-£600 per bottle, and with this price-tag it has been nicknamed ‘Liquid Gold! Mepron is known to be especially hard on the liver, so supporting this organ with supplements and constant detoxification is key. Not only does this prevent damage, but it also helps to clear my liver pathways, increasing my ability to handle the medication for a longer and more effective time period. This medicine is also absorbed better when taken with a fatty food, so a tub of organic almond butter and a spoon has been close to hand!

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Zithromax is prescribed for the treatment of acute bacterial infections. It is a broad-spectrum antibiotic, meaning it is active against a wide range of bacteria and thus being a good antibiotic to try as I have multiple tick-borne infections. A combination of Zithromax and Mepron is known as an effective Lyme and co-infeciton treatment protocol, and I am hoping I get some successful results from this.

The herx reaction from this combination has not been easy so far, but it is bearable. I bare in mind that when treating, there is a level of ‘No pain without gain’ to consider too. I ensure I get regular blood tests to measure liver and kidney functions and other important levels in my body. Unfortunately on this occasion Januarys test results went ‘missing’. I am non the wiser as to where or how this happened, but I will attend another blood draw in the hope that I can have some numbers on paper soon.

“They never said it was going to be easy, but I am hoping it is going to be totally worth it”.

perseverance

“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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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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