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!

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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