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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Reflecting in the Home-Land

I know I am still sick but this past week since being back home from the USA, I just feel a massive amount of determination to not let this disease win. Right now I am so grateful for even the simple things in life and I just feel lucky to be alive and kicking even if I am still quite broken! The support I have received from people has been incredible, every message however small really helps to keep me going.

On the other side of the coin let me share with you that becoming so ill turns your world upside down. When you are unable to socialise or work you soon realise before you know it that you have lost more than a handful of friends. I am still not sure wether this is because people don’t know how to deal with this type of chronic illness or because they can’t understand how someone can maybe look well and still be too sick to party. That’s life of an invisible illness. Apart from the weight loss due to an additional H.pylori infection which has massively effected my GI tract, ‘I look well’. I suppose it’s times like this when you find out who your real friends are. Some you lose and some you have to give away. I have been both shocked and saddened at this reality, especially when during this time one longs for company. This illness is truly isolating. I don’t want a pity party or friendships out of guilt, I am just feeling reflective and am stepping out of he box and accepting that those who walked out of my life made room for all the lovely people who have walked in, what more could I ask for. It makes me happy to see people progressing with there life, but I am not going to lie there are times when all it takes is one more fun adventure photo or a new baby announcement to start the tears rolling. I feel like my life has hit pause whilst everyone else is on fast forward. Who knows when the play button will be pushed or how quickly I will catch up on life. When will I be well enough to build a career and follow my dreams? So many questions and unfortunately not many answers. That is the nature of this illness, so un-predictable, a world of the un-known.

On a positive note I also feel like I have gained a huge amount of support and guidance from a new group of people, an online community of other Lyme sufferers, also known as ‘Lymies’! Believe it or not we don’t just sit in a state of misery and mourn our past lives, well not all of he time! In fact many feel motivated to fight this disease, to help others unravel the complexities of diagnosis and treatment, and to do our best to raise awareness of this world wide problem. By using the internet sufferers can be connected from the comfort of their homes and realise that we don’t have to be alone. I have even had the chance to meet up with some of these inspiring people, even if it has been sitting opposite each other in a medical environment getting ‘prodded and poked’ with needles! I am happy to say I have also made some really special friends globally, that I know will last beyond my life with Lyme. Just imagine the mahoooosive party when we are all celebrating the return of our health, my excited face will be off the scale!

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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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Another Day, Another Hospital… Not quite how it looked on ER!

It has been ten days since I last updated my blog… Why? Well! My body decided that there wasn’t enough drama already in my life and decided to bring a little more to my daily life with Lyme! I would have much preferred a day symptom free, or gluten free, but obviously that was too much to ask!

So I was four days into my new medication programme, and it had been two days since I introduced the Rifampin. I seemed to be tolerating everything well (I thought!) and the only obvious change I had noticed was my new bright orange coloured urine!

Then the pain began to kick in at the end of day four. I was starting to experience head and neck pain which wasn’t like my usual Lyme headaches. Since becoming unwell I have experienced some really debilitating headaches. These can last for days or weeks at a time and have even needed morphine to control. I thought these episodes were bad, but this was so much worse. At first it felt like there was a heavy weight in my head which was rolling around and causing bruising and this was interspersed with various stabbing pains. It felt uncomfortable to walk around or make sharp movements with my head, so I made sure I was drinking lots of water and went to sleep.

At 4am I woke up to more intense pain, still in my neck and head but ten times worse. My head was throbbing and felt so full of pressure, as if it was a balloon full of air to the point of bursting. With every slight movement the pain increased and I was confined to lying horizontal like a corpse, trying not to move even a millimetre. I felt unable to put my chin to my chest like there was no range on movement left in my neck at all. I took some painkillers and lay for an hour in the hope I would sleep a little more. Unfortunately the pain was just increasing and I was soon in tears…again! I began to feel really nauseous and this was closely followed by frequent episodes of vomiting and urgent desires to empty my bowel! You get the idea! The logistics of this just weren’t good! Needing to get to the bathroom meant having to get out of bed and moving was just not a good option. I crawled slowly to and from my bed until this became too much. I gave up and decided to confine myself to the bathroom floor. Every time I was sick the pressure was increasing and I literally felt like my head was going to explode at any point. If I try to describe the pain, I would say it was like I had been shot in the head, stabbed ten times, had swords through every nerve and someone had taken out the contents of my head, mixed them in a blender and just dumped them back in again! It felt so wrong on every level. I put ice packs all around my head and over my eyes and lay in the dark. I felt really sensitive to light and sound and could barley open my eyes. They felt bruised to touch and to blink was just more pain I couldn’t handle.

By about 10am, I was now hysterically crying and could not find anything that would relive the excruciating pain, so it was time to phone a doctor. Louise made calls, explained how I was feeling and she was soon writing down the address of the local hospital. She picked up my medical file and helped me stumble to the hotel foyer to get a taxi. I had just made it to the ground floor by sitting crouched in the corner of the lift and then a couple of minutes later I fainted. Luckily there were a couple of good Samaritans in the reception and they kindly offered to drive us to the hospital. For once I didn’t hesitate to say yes, or worry about inconveniencing someone, I just couldn’t get there fast enough! I was so grateful for their kindness and wish I knew who they were to say a proper thank you. I lay in the car clutching my head as every turn or bump in the road was just adding to the pain.

I arrived at the ER department of the hospital soon after, and was wheeled to a cubicle straight away. I was handed sick bags and had nurses taking my vital signs within minutes. I had some blood taken and was soon hooked up to some fluids as they were concerned about dehydration. I explained the pain as best I could through the tears and informed the doctor of my current illness and all the different medication I had started taking. They administered a variety of Intravenous medications for the pain and nausea, as well as a type of narcotic to help relax the body, the tension in my head, and enable me to sleep through some of the pain. Within about three hours I had stopped vomiting and noticed a slight relief, the pain had gone from a ten to an eight and even this slight change made a world of difference. My blood tests came back and there was no major concerns or signs of damage. There were out of range neutrophils/segs levels in my blood but this has been picked up previously and seems to be due to to the chronic bacterial infections I am fighting. As a whole there was nothing which alarmed the doctors and he was happy that the pain would ease with time. He explained that this unfortunate reaction would not cause any lasting damage and suggested that I stop all new medications and consult my Lyme doctor the following day. A few hours later when I felt I was able to make it home, I was discharged with appropriate papers and prescriptions for painkillers and antiemetics.

Rifampin Reaction

I was soon back at the hotel, but still felt far from OK. Although the medication was helping to a certain degree, the pain was still very much there. For the next two days, I was looked after and barely left the bed. It still hurt to move my neck/head and so was even spoon fed at one point! Although eating was the last thing on my mind, I can’t really afford to drop any more weight, and I also needed something in my stomach when taking all these pills, or that will cause its own problems! I was exhausted, and the dizziness, drenching sweats and tremors had noticeably increased. I slept a few days away and then went to the clinic to have some more IV fluids with electrolytes. At this point I just had a small and bearable headache and thankfully the worst was over. (Massive sigh of relief!) I consulted my Lyme doctor as directed by the hospital and was told to stay of all current medication and a new medication list would be written up which I was to commence after a couple of days.

It seems my body just did not tolerate the antibiotics at all, in large due to my liver being so congested. The medication had killed of few bacteria but as this happens more toxins are released. By body was so ‘toxic’ that I was most likely having a bad herx reaction, but at a level which can be too dangerous to the body.

I have stopped two out of the three antibiotics, and replaced these with a number of new herbal supplements. I am having to start a more gentle approach to fighting these bacteria, one that my body can tolerate. This type of sensitivity is not unusual when suffering with Lyme and Co-infections, and does not mean I cannot treat the illness, it just has to be done gradually, and with a less aggressive approach. I felt a little disappointed at first, that I was unable to tolerate the other meds, especially as this new protocol will not be as time effective. With this in mind though, I have just accepted that it’s how it has to be and like the traditional Aesop fable of ‘The Hare & the Tortoise’ teaches us; slow and steady wins the race!!

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This is going to be a rough ride…

So it’s just before 6 o’clock here in California and finally the nausea of the day has began to subside. It has been a hard day and the tears have been flowing by the bucket load. I think all of a sudden the enormity of the recovery journey ahead has sunk in. It’s going to take over a year minimum to see the big changes, although hopefully over time my symptoms will diminish or lessen in severity and my immune system might eventually do some of the fighting!
This illness has been a whole lifestyle change, and will continue to be even when eventually I go into remission. I am going to have to watch how far I push my body in the future, both in work and play as I just can’t afford (literally) to relapse.
This 6 week trip alone is costing an estimated £15 000, for fights, hotel, taxis, food, appointments and the array of costly medications and supplements are not cheap! To give you an example just the IV medication alone per day is £200. It’s insane, this illness is for millionaires, which I am clearly not! There are not enough words to describe how grateful I am for the money that has been donated so far. Without this treatment I would deteriorate and eventually probably die. These initial costs only cover the first 6 weeks of treatment. I will have approx £500 of outgoings a month for my medication once I return to the UK and I won’t be able to work for a long time either. There will have to be another trip out here too at some point and depending on my progress I may need further IV. It’s all if, buts and maybe’s at the minute, and I will just have to take one day at a time.
I hopefully have a good chance of recovering from this, but as I mentioned before there is no simple or easy fix, I really wish there was. All three of the bacteria I am suffering with  are unfortunately really difficult to get rid of. They hide deep inside blood cells, and the bodies tissues and joints. They take on different formations and even build there own protective coating to try and avoid being killed off. Talk about perseverance! However much they try to multiply and thrive in my body,  hopefully in the long run, I will manage to win this fight.
I have lost a lot of weight with this illness because of the effect it has had on my stomach. Right now I resemble a bag of bones and have so much muscle wastage. This is not helped by the viscous cycle of nausea which makes it really difficult to eat. Today I struggled to eat some chicken salad and a gluten free wrap through the tears, washed down with hot water, lemon and ginger!  With all these tablets I need a hearty loaf of bread to line the stomach but this isn’t allowed with the new gluten free diet! I am going to have to force down food little and often, I need the calories and the strength to fight this through to the other side.
Well only the evening now to get through and then I can tick off another day! It’s worse than watching paint dry! I am a not so attractive shade of ‘pale’ and have some beautiful black rings under my eyes! I have had my 20 minute Epsom salt bath, and came out of that shrivelled and with massive tremors. This disease hates heat, but its tough as I have to detox as much as possible. The anti-sickness tablets have finally helped a little and copious amounts of lemon and ginger water are definitely helping. I will most likely spend the rest of this day horizontal but at least I have free wifi to keep me in contact with the world!
Tomorrow I introduce another new drug so watch this space… I am sure there is going to be some highs and lows to document!
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New Year, New Meds!

I am happy to say I finally attended my first consultation at GMA (Gordon Medical Associates) yesterday. Armed with pen and paper and my ever growing medical file, I managed to keep my concentration for two hours! I had to discuss the last 15 months of illness; not easy when the list of symptoms is probably longer than Santa’s naughty list!

It was refreshing to talk to a Lyme literate doctor who is used to treating patients with this illness and who has wealth of knowledge and understanding of the complexities that surround not only Lyme, but the co-infections too.
This disease is pure evil, fact!  There is not one part of my body that hasn’t been affected by it in some way. A symptom lottery is how I explain my day to day pain, because I never know how I am gonna feel. It can be anything from burning skin, tremors and nausea, to chest pains and bladder dysfunction and this is just to name a mere few!
So you may be wondering, what is my plan to try and fight this beast?
Well, here is the complicated part! Not only do I have Lyme, but I also have some  co-infections too. The Co’s I have are called Bartonella and Babesiosis, both of which are also tick-borne diseases, so it’s true bad luck does come in threes! Each of these bacteria needs different types of antibiotics and herbal supplements in order to effectively try and rid them from my body and lower the chances of me relapsing years down the line.
Over the next few days I introduce a two week course of three different oral prescription antibiotics, to start to treat the Bartonella. These are Clarithromycin, Rifampin and Diflucan. I have done a lot of research on different meds and Rifampin is the one that causes many difficult herx reactions. This will mean an  increase of symptoms and the severity  of them, maybe new symptoms too. It also has a reputation for causing extremes in mood and mental state, so looks like I will be hibernating in this hotel room till the worst is over, don’t want to scare away the other humans in the hotel!
In addition to the antibiotics, I have also started various new natural supplements. However hippy you might think this sounds, it’s a must in order to support the bodies organs and my immune system, which has become suppressed through this illness. I will now be taking Ox Bile to support my liver, Itires to help my Lymphatics, Cranstat Extra for my urinary tract and Magnesium for my bowels. With out going into detail on my symptoms, especially the latter, you can take my word I need to take these herbals! I will also continue to take the supplements I started a month ago, which are Chlorella, Co Enzyme Q10,  Allicin, Serrapeptase, B12, D3, Krill Oil, Vitamin C and a multivitamin. In addition I take Omeprazole to protect my stomach and help with the acid and a good probiotic. Both of which are important especially when taking a lot of antibiotics. With all these pills and potions I must detox with my Epsom salt baths and lemon water too, everything helps, trust me!
After two weeks of the oral antibiotics, I will then introduce the intravenous antibiotics to begin to treat the Lyme. This will be for a minimum of four weeks to start with, all dependant on how my body reacts. This may be combined with some IV vitamins too. Everything has to be added slowly so that body is not shocked by the sudden intake of medicines.
Besides all the medicine,  I have also had to start a gluten and sugar free diet, with minimum dairy intake… This is vital, as the bacteria feed off those food types and I need to make my body as natural as possible. Its neither going to be fun or easy, but I am sure after a few weeks I will be settled into a routine. It’s not like I have a choice in the matter so I am just going to have to crack on with it!
Last but not least, I would like to wish everyone a HAPPY NEW YEAR!
Life can change in an instant, so live for now, enjoy each day and worry about the future when it happens. Be happy, healthy and go and make your dreams come true. Smile, love and laugh…you have one life, live it.
Best wishes to you all for 2014, may this be the best year yet and more.
Chantelle x
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Almost Time!

So tomorrow is the beginning of my recovery journey. I will attend my first appointment at a specialist clinic called ‘Gordon Medical Associates’. I have spent the afternoon filling in the mammoth amount of medical forms and I am feeling mentally prepared for the information overload!

I currently have no idea how long I will be in the USA, it all depends if they think my body is strong enough at the minute to start the IV medication straight away. I am hoping it is, as I just want to get the treatment started so there is no chance of any permanent damage to my body. At the same time I feel nervous, as the bodies reaction to the antibiotics can be even worse than the pain I am already experiencing. This is called ‘herxing’. It is a reaction to endotoxins released by the bacteria as they are dying off within the body. All Lyme patients will herx differently, depending in the level of Lyme and types of co-infections the individual is suffering with.  With this in mind, this is why detoxing the body is so important. This will be done with a varied programme of additional supplements, epsom salt baths and massive dietary changes. This treatment programme will involve me doing all I can to help and heal my body, and no one says its going to be fun or easy!

Now to get some sleep before the big day. Night x

Gordon Medical Associates

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