UVLrx – Let there be light!

Whilst I was in California accessing intravenous antibiotics, I also tried various other alternative treatments. One of which was an 8 week course of UVLrx. This is a new cutting edge treatment for infection and virus load and is getting great results for patients with Chronic Lyme. Ideally it would have been more beneficial for me to have up to 20 treatments of this but due to lack of financial funds it just wasn’t possible.

 

 

This treatment is the first of this type of direct-to-blood intravenous light therapy treatment to be available. For each treatment an intravenous catheter is inserted into a blood vessel in my arm and the Polychromatic light source administers multiple wavelengths into the insertion site for 1 hour per treatment. Other light based treatments only deliver a single wavelength where as this treatment delivers 3, therefore increasing the potential for healing and for destroying unwanted pathagons. The UV light in this treatment is a powerful antimicrobial agent working against blood born pathogens in the body. The additional wavelengths delivered have been proven to repair damaged cells in the body and enhance the immune system.

 

 

Prior to starting this I was slightly skeptical as to how much it would help, but after seeing other patients get such great results I knew I had to give it a go. I can tell you though, I literally noticed the difference after the first treatment, and during sessions 3-5, I actually noticed the difference during the hour of those sessions. My energy levels over all increased and on occasions it was like I had been given a double espresso! I found my mental clarity improved, and with each treatment my brain fog lessened considerably. The brain fog is on-going, but I do feel as a whole it has lessened in severity and my cognitive abilities have improved. I noticed over time, a considerable reduction of inflammation and pain. This was apparent especially in the back of my head and base of skull and neck, which after having encephalitis was a really troublesome area. During sessions 6-8, I felt I did herx much more than previous sessions, and our thoughts on this were that we were reaching infections at a much deeper level. Maybe it was some of those super persistent bugs who thought they were getting off lightly after invading my body!

I had noticed prior to this course of treatment that my tremors were at a high level and the feeling of internal vibrations/jitters was quite intense, and again although this does still exist on a daily basis the intensity of these type of neurological symptoms are greatly reduced. I believe for myself personally that I was responding well to this cutting edge medical technology and had I been able to afford further treatments of this type, that I would have most likely continued to see positive results.

UV light treatment has been used for over 80 years and has been proven to make rapid readjustments to a variety of health conditions. I think it was only a matter of time before a machine of this nature was invented and I hope that with time it can aid many patients in their healing journey. I am really pleased that Gordon Medical Associates have invested in this technology as it is another option which is less toxic to the body than conventional medicine.

As a whole I feel this treatment has reduced both my viral and infection load and I wouldn’t hesitate to recommend this to another patient who is also suffering with chronic levels of pain and inflammation.

Big love, hope and light! Chantelle x

 

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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

 

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

Whatever you do you have to keep moving and never ever give up…

Hello! It has been so long since I have posted a blog on here, and I am gearing up to updating you all with my current medical ‘status’ soon I promise! It is not that I haven’t had anything to update you with, it is the complete opposite! It has been one crazy ride this past 6 months and I haven’t known where to start to put this experience into words, or really had the mentally capacity to do so! My body right now is beyond complicated!

This is just a brief post as I start a new week with some new positive thinking as I try and keep myself and others going through whatever battle they also may be facing…

I have come to realise that success isn’t measured by just what you accomplish in life, but also how you can inspire and support others. I will keep fighting this battle, not only for myself but for all of you who suffer too. Wether this be from Lyme Disease or another chronic, debilitating and often invisible illness. I want to inspire and motivate people to hang on that bit longer, to fight that much harder and to become mentally stronger when you feel at your weakest. I want to hear someone say ‘because of you I didn’t give up’. Keep believing anything is possible and whatever you do never ever give up hope.

I love this quote by Martin Luther King:

‘If you can’t fly then run.

If you can’t run then walk.

If you can’t walk then crawl, but whatever you do you have to keep moving.”

Right now I would be lying if I didn’t say I feel physically and mentally knocked down by this illness, but I’m trying to move with it and keep changing my perspective. I am just in a new and temporary position/situation, I will take it lying down (literally), but I will roll over and look at the stars until the next phase begins. I’ll do my best to find a positive in all these challenging situations and I WILL get through these days. They are the stepping stones to my future, my destiny and to better health. I can still breathe, see and laugh. I can feel loved by my family and friends and although I can’t currently dance with my feet, I can still dance in my dreams, and thats something right?

I’ll be back soon with info on my treatment and until then remember to make the most of everyday, make it count and remember life isn’t what comes to you, its what you bring to it.

Much love always, Chantelle  xXx

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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