Juliet's life saving surgery.
12/01/2018
PLEASE READ LATEST UPDATE FOR PROGRESSIONS AND ALTERATIONS IN MY CONDITION AND TREATMENT PLAN.
Thank you so much for your continual support.
- Juliet.
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Updated information as of 23/08/2017...
Hello everyone,
Juliet is unfortunately now too weak to update this page by herself so I (Juliet's sister Hannah) will update you all on her current situation.
Since first being diagnosed with Lyme Disease five months ago, Juliet had further declined in her health and was losing more weight and becoming weaker. She was since diagnosed with Microscopic Colitis after some extensive testing but this was now what we know to be just another secondary condition to her main condition we now know she could have been living with for a number of years.
Something someone had mentioned to her about a year ago which she had put to the back of her mind cropped up again recently, this time because her good friend Sian, had recently developed the same symptoms as Juliet and made it her mission to get to the bottom of it and save her own life. She was rapidly declining from an average functioning woman to being completely bed-bound and severely underweight and if it had not been for her thorough research on a rarely diagnosed condition, she would not know what was wrong with her and may have had to face an early death in her 20s. Like Juliet, she had suffered from debilitating symptoms throughout her life and just never felt well.
This condition is known as Vascular Compression Syndrome. We now have the missing piece to the puzzle. Sian had told Juliet about a fantastic doctor based in Leipzig, Germany; Prof. Dr. med. habil Thomas Scholbach who has the expertise on these conditions. We went to his clinic earlier this month for a consultation and special ultrasound scan and he immediately told us what was wrong, we could see very clearly the compressed arteries on the screen and the visual of water almost being thrown back up towards her throat, because the compressions meant that food and liquids could not pass through the digestive tract correctly. This is just one of many results and symptoms of these compressions.
Juliet has been diagnosed with three out of seven possible compressions and they are named as follows; Severe Nutcracker syndrome, Superior Mysentric Artery Syndrome (SMAS), also known as Wilkie Syndrome and May Thurner Constellation. In Layman terms, the artery compressions mean that blood cannot flow properly to the intestinal organs, the kidneys and the pancreas. Juliet's pancreas is inflamed and full of blood vessels as a result of this. The bigger result of all this means that nutrients are not passing through the blood stream at the percentage it should be, and waste matter is not being processed correctly through her intestines, hence why she has been unable to have normal bowel movements for almost a whole year. Past trips to A&E in the UK only resulted in laxatives for impaction being dished out, which did not help. Juliet knew in her heart and gut that something was really wrong. The gut never lies as they say.
Additionally to the above symptoms of this condition, toxic matter is not being expelled from the body as it should. This is why some people can live with parasites and diseases laying dormant such as Lyme but appear to be healthy; because their organs such as the kidneys, liver and pancreas are dealing with the toxins effectively as a healthy human body is designed to do.
Dr Scholbach also uncovered the reason behind her compressions was due to her spine being unnaturally curved, a condition she most likely could have been born with.
Sian has been diagnosed with all seven of the possible compressions which explains her state being worse than Juliet's.
Another British young Lady, who has been in the UK media could not eat a single morsel of food for two years and is now functioning completely normally. Her name is Emma Green and she also went to see Dr Scholbach and had her surgery in Germany by top Surgeon Dr Sandmann. The link to her story is below (please enable flash on your browser to view the video):
http://www.itv.com/news/central/update/2017-06-15/woman-eats-meal-for-first-time-in-two-years/
In her own words, Emma felt like she was “dying”, something Juliet has and is feeling. Emma's surgery was highly successful and she is well on her way to leading a normal life again. She has gone from being in a wheelchair like Juliet to starting driving lessons.
Juliet desperately wants to regain her life like Emma and fulfil her dreams of getting back to her passion of illustration, going out and seeing friends, working a part time job, working with charities, doing voluntary work and possibly going back to University to study. She wants to do all these things and more, and without this life-saving surgery she won't be able to see these things happen.
All of your kind donations towards the treatment of Juliet's Lyme disease has not gone to waste, and Juliet plans to follow up at Breakspear Clinic to address this once the structural damage of her intestines are corrected.
The truth is, if she doesn't get this surgery soon, the reality is that she could die. Very much like this lady, Lisa Brown who died earlier this year from one of the artery compressions Juliet has been diagnosed with (SMAS) http://people.com/human-interest/lisa-brown-starving-death-dead/
Juliet has already written letters to her closest friends and family to prepare for if this were to happen. I don't want to lose my sister. I love her very much and can't bear to think of her life ending soon. I honestly don't know how I will get by if this were to happen.
My grandmother is now 94 and if she heard this news I'm afraid it will kill her too.
My friends all know how I seem to deal with whatever life throws at me, I just get on with it. But truthfully, I am not as strong as I appear. I have faith in God and know whatever happens is in His plan, but I can't give up fighting for my sister.
We desperately need to raise the funds for her surgery which roughly will cost between £13,000 and £20,000 as well as the fees for the hospital stay and the follow up appointments and treatment(s) at Breakspear, and possible corrective surgery or treatment for her spine.
Below are a few pictures of Juliet when we were in Germany, now having to use a wheelchair to get around, weighing just 5 stone (31.7 KG).
Before surgery, Juliet needs to put on weight and her condition makes it very hard to do so. She will need to drink high calorie drinks and if this doesn't work she will have to go onto a feeding tube.
Success rates of the surgery are not 100% but if we do not try, she really could die. When we know more details about when and where the surgery is taking place and the exact amount we need to raise, I will update this page with more information.
Juliet's illness has made me realise just how much we take for granted. We take for granted the ability to eat food without choking, to digest food without any pain, to empty our waste matter with ease, to be able to eat from any food group without having severe reactions and to simply drink a glass of water without it trying to come back up.
Please donate as generously as you possibly can, and if you cannot afford anything please share this with all your friends and family.
Thank you for taking the time to read this update and may God reward you for your help. Please pray for Juliet's friend Sian too.
Hannah
Further links for reference:
https://www.karger.com/Article/FullText/431307
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3644149/
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5 months ago...
Juliet's Chronic Battle
In my own words
Dear Friends and Strangers,
I am a 24 year old woman slowly getting sicker...
I have recently been diagnosed with Lyme disease after many years of suffering with debilitating symptoms since childhood. This uncovering has been a small relief after decades of mystery. (I recall being ill since age 3-4). The small relief is clouded by the fact treatment options are limited, costly, time consuming and requires highly trained individuals.
SOURCE:(http://www.greenfacts.org/en/lyme-disease-borreliosis/index.htm)
I have, over the years, made it my quest to uncover the truth for my mystery illnesses, going back and forth to various specialists... All of which sticking labels on me such as 'IBS', 'Chronic Fatigue Syndrome/Myalgic Encephalopathy' , 'Depression/Anxiety' amongst others, yet not offering any plausible explanations or treatment plans other than various anti depressants and other drugs which have only made me worse.
Neurological Effects
During these past two years, neurological manifestations in my body have developed to such a degree that I now experience choking when eating because of failed muscle contractions in my esophagus, a term labelled 'dysphagia' which means difficulty swallowing.
This is primarily something stroke and Alzheimer's sufferers develop, not young women with their whole lives ahead of them. Shooting nerve, stabbing and other mystery pains, presumably due to my lack of vitamin and mineral assimilation are some other neurological issues I have. My diet has had to be mostly pureed and or liquidised and I am very limited in what I can consume due to triggering of symptoms. The other main neurological symptoms are crippling migraine headaches which give me extreme nausea, that I have dealt with since age 14 as well as cognitive/sensory issues such as poor short term memory, difficulty finding words, difficulty concentrating, what is known as a 'brain fog'. Additionally, I suffer from blood pressure issues that leave me prone to blackouts, a sign of autonomic nervous dysfunction. This is normally assigned the label of POTS(postural orthostatic hypotension) and is common amongst people with a variety of auto immune issues.
SOURCE (http://www.bada-uk.org/lyme-disease-borreliosis)
Hospitals/Tests
I spent the whole of last year in and out of hospital, getting tests/procedures, being on IV drips for pain and dehydration, only to be told they couldn't find anything significantly wrong with me.The only conclusion they came to was that I had 'Esophagal dysmotility' and thus slow gut transit. This was just a term to describe my symptoms, as was the IBS and CFS labels. The various consultants all frowned as they trialled me on acid blockers, motility drugs, anti-sickness, anti depressants and proton pump inhibitors, all of which have more side effects than benefits. I am now certain a lot of these drugs have made me worse.
The lower right side of my abdomen is sore and painful, with marked distention. I have discovered this is due to inflammation in my intestines presumably due to bacterial overgrowth and yeast, which all have their own set of individual symptoms. Please refer to SIBO(small intestinal bacterial overgrowth) which could quite possibly be linked to the Lyme bacterial agent itself - as Lyme causes a whole host of issues if it is left untreated which in my case is true as I have only just discovered it after two decades. The fact that my gastrointestinal tract has been so severely affected in this manner means that I cannot eliminate properly. In a normal, healthy individual, a person’s pivotal eliminative organ(the colon) should optimally be getting rid of waste products at least once a day without pain or struggle. Please refer to the Bristol Stool Chart and accompanying information regarding healthy bowel habits. The fact mine does not, means toxins are sitting there, fermenting and causing extreme pain, distention and affecting my other organs such as my bladder and kidneys. The Liver is also associated with dumping toxins. My liver cannot dump toxins effectively either because it requires the colon to work efficiently first and foremost as the toxins need to be released... What happens when one or more bodily processes do not function optimally, the toxins inside a person just circulate in the blood stream causing a perpetual toxic like state which causes sufferers to constantly feel fatigued and 'cold and flu like' - this is when we are either labelled as depressed, stressed OR given Chronic Fatigue Syndrome/Myalgic Encephalopathy or Fibromyalgia or even Lupus as a diagnosis...but again these are just labels to describe a collective set of symptoms.
'Umbrella Terms' is the general rule of thumb regarding Allopathic (Modern/Conventional medicine) Toxic agents are atroot!
SOURCE(http://www.nursingschoolhub.com/lyme-disease/)
back to my story....
NHS and my change of approach
More than 5 months ago, I was solely relying on the NHS for answers and help, but having failed me numerous times I decided to see nutritionists who practice naturopathy and integrative medicine. I was led to alternative ways of thinking and practice modes out of sheer frustration, determination and my newly acquired degenerative symptoms. However, I have spent a small fortune and not yet found the right person with the most adequate knowledge. It's very much been a case of me asking all the questions and leading my own protocols, whilst paying large sums to these private alternative doctors, all the while still declining because i'm pretty much left to my own devices and consulting with them to ask more questions costs money! I guess you could say at the end of the day, they still haven't yet mastered true compassion over greed.
The biggest plus is that through these doctors and my ongoing research, I have been able to pinpoint Lyme disease as a major factor in why I have been so sick all of my life to the point of today. The tests I've had which have organised for me through non-NHS doctors, are via certified labs that test for extensive markers and are the gold standard in detecting pathogens and lyme/other bacteria. These tests do not exist on the NHS. So you leave your average doctor's surgery thinking that nothing is wrong with you because your GP says so. But I am the one having to live with this, not them, so I did not accept their dismissal, tirelessly fighting my own corner.
I have lost faith in all of the practitioners I have seen so far as it is beyond their scope and I simply don't have the funds to keep having consultations with doctors who still seem to lack certain knowledge and care. (The naturopaths/functional doctors, despite their efforts, I still feel very much on my own after failed trial and error approaches).
I am losing more and more weight, approximately weighing just 5 stone 11 now, having dropped down from 7 stone 8 two years ago at my height of 5" 3.
(3 years ago to present day)
Everyday is a struggle to stay alive. I have all of the symptoms of Lyme disease which funnily enough echo the symptoms for CFS/Fibromyalgia/Thyroid issues/IBS and IBD/other auto immune conditions, so could it be that at the root cause is Lyme and/or other possible infectious agents? Instead of what we are spoon fed by traditional doctors who turn you away?!
These symptoms plague me everyday and flare up whenever they decide to. I cannot make plans. I have had to drop out of university, give up all my hopes and dreams and am housebound apart from going to medical appointments. At first I could use public transport but in recent times I have to take taxi's everywhere as my frail body cannot withstand the overwhelming strain of walking especially up and down stairs and along platforms.
Is there any hope left? They say that when you are so low the only way is up, once you reach that dark, dark place... It can't get any worse. Each day I surprise myself and surely, get worse, but I am still alive. I try to be hopeful, but this is eating me alive and i'm so sick of being this sick and watching the world go by.
Finding a light?
I have found a clinic called Breakspear who specialise in environmental illnesses, especially in chronic cases where people have been sick since childhood. I feel this is my last hope to get better and achieve the dreams I want to achieve. They follow the principles of treating root causes of illnesses by testing for as many things as possible and slowly formulating a plan to chelate(detox) the toxic agents that may be latching onto a person's DNA. This includes pathogens in the small intestine (which i was found to have), bacteria and viruses such as Lyme and it's many co-factors( which i still need further testing for as i was only tested for 3 others and it is widely accepted that Ticks can carry a number of other infectious diseases.
SOURCE:(www.LymeDisease.org)
The one found within me at cellular level is called Borrelia Burgdoferi, but there are others...see above) there is also the fact i could have Epstein Barr Virus, Coxsackie Virus(the antibodies on my recent test were very high), or any of the other main viruses that could still be active within an immune suppressed individual such as myself. There is also other toxic agents such as heavy metals or organophosphates, and methylation problems amongst others that I will need to be tested for. The reason being is that people who have been sick extensive periods of time have an accumulation of toxic agents preventing their healing, therefore what is needed a prolific and meticulous method to uncovering what could potentially be underpinning a person's symptoms and then devising protocols that the person will be able to tolerate as in some cases if a person is highly toxic they can often get very sick if the toxins are chelated too quickly or not in the right order.
Please refer to the wonderful work of Dr Sarah Myhill. Her books, 'Sustainable Medicine' and 'Chronic Fatigue Syndrome:it's mitochondria not hypochondria' honestly make the most sense to me even in my confused like state! I highly suggest everyone read her works. A scientist called Ron Davis is also tirelessly working to abolish the myth of Chronic Fatigue Syndrome being a manifestation of poor motivation and depression, as current treatment guidelines for this illness focus heavily on graded exercise therapy and cognitive behavioural therapy...suggesting a person needs to change their thinking patterns in order to overcome a very real physiological illness is beyond me.
Many patients have been made worse through this. The NHS still use these guidelines today. Please look into Ron Davis' work on the mitochondria. The mitochondria become suppressed and cannot produce ATP in cells, something Myhill echoes and focuses on too. At the root cause of this could be anything... From Lyme to other toxic agents, (see aforementioned in previous paragraphs). So what is suppressing many of these patient's systems? This is where we need highly skilled people such as those who follow Myhill's way of thinking. I mean truly and wholeheartedly follow this to the nth degree and not leave their patients on their own to employ the protocols! Someone or a team needs to be accountable for when things don't go to plan and this is something I have not yet had the opportunity to have. A place where you go in for all the tests and you are given care plans that take the strain off your already ailing body. A young woman named Emma went to Breakspear in a similar state of disease as I face today, and she is slowly making a recovery. Her blog is www.blondevoyage.org. You can read about her journey/treatment with them.
The team at Breakspear have been trained to deal with environmental illnesses, unfortunately most people's treatment (especially for Lyme disease) can cost anywhere between £10,000 onwards.
The NHS have repeatedly failed me, sending me away saying nothing is wrong, but year by year my health has slowly been diminishing. With that comes great anxiety and depression, secondary to my physiological symptoms, not the primary issue here, which I have repeatedly been fobbed off with. To be told that what I am feeling isn't ',real' and there's no such thing as feeling like this at a young age and I am 'just stressed or depressed' is highly patronising and demoralising. It can leave even the most self-assured and strong-willed suffering from low self esteem and confidence issues. When you are repeatedly told something by assumed people of authority, you sometimes question your sanity. Actually it is very much akin to the bullying I received growing up, in which I was mocked for my skin colour, my weight, my overall looks(because I've always been deathly pallid and gaunt due to sickness) so you internalise their words and your mindset merges with their own, over and over it sinks deep into your subconscious and you no longer have any self worth or autonomous thought patterns regarding that set subject. You lose your inner voice, you side with your oppressors. If you are profusely invalidated, the bigger the likelihood it is you will believe it. It is a fact of life. It's a form of manipulation. A person's mind can be trained, that's why many sufferers back down and give up.
For decades, I have put up with this, thinking that this was just the card I was dealt in life and I will die having not lives, having no idea there was a possibility I could get better. It was only until two years ago when my aforementioned neurological symptoms manifested and i could no longer do something as rudimentary as eat a meal with friends or family without suffering extremely (also developed numerous allergies and pain because the entire GI tract has been affected by the muscle and nerve issues) that I took matters into my own hands and decided to research day and night, reading as often as two books at once. I made it my mission to devise healing strategies. Embarking on this mission was tough, I felt overwhelmed and despairingly low because the wealth of contradictory information is so unfathomable even for the physically healthy to comprehend let alone someone who's health was rapidly declining.
Each time I thought I've found the right path/doctor/remedy, my mind became boggled again and ultimately the path/door seemed firmly shut. More dead ends. I had to face the fact that I could either keep taking these experimental risks, exhausting money which I've had to borrow/scrimp and save the minimal allowance the Department for Work and Pensions decided to pay me for being unable to work, or surrender and give up and just accept my fate...to die a slow and painful death.... To be honest everyday I feel like it could be my last, still, i must be resilient because there is a small glimmer of hope within my ailing body and soul. The fire isn't out just yet.
It is actually thanks to my dear friend whom has been a blessing throughout recent times, suggested Breakspear to me. I never knew a clinic such as this even existed. So at this stage of my life I will admit defeat. Doing this on my own is proving futile and fatal. I don't think I can afford the remaining tests and then treatment protocols at Breakspear, having already frittered away small fortunes on previous ventures. I simply don't have an income other than what I will be awarded monthly from DWP which will be minimal. There is an option to get funding from the NHS to get treatment from Breakspear, but given how they have failed me time and time again, i don't really see them agreeing and even then the funding process could take months or even years, time i haven't got.
My body isn't absorbing nutrients. I am losing weight day by day. I no longer have my menstrual cycle. Half of my hair has fallen out and gone grey. I fractured my thumb which still hasn't healed due to low calcium and vitamin D status. My joints and limbs ache and throb, my stomach hurts like knives and electric shocks, my head also hurts in the same way. I can't remember simple things from day to day. I set a million reminders on my calender, phone,notes on papers everywhere... I still can't remember things. I have to massage and press my bladder just to be able to urinate, and my bowels are so inflamed there is a chance of an obstruction which could be the reason for my severe IBS symptoms. Yet i was told by my NHS consultant last summer that i am not allowed to have a colonoscopy and sent me away with laxatives. I don't want to keep taking these horrible medicines which cause more pain and debilitating symptoms. I fear that if no intervention happens soon, i will lose part of my bowel or bladder/kidney. The consultants I've been passed from pillar to post with seem to have no idea how much i am suffering. 6 months has passed since they refused to investigate further. Now I am sicker and weaker.
I do not completely blame the NHS...there are some very sincere, hard workers there but there is no adequate funding or training amongst staff, and this is why people like me need alternative therapy because it's a matter of life or death.
I didn't want to even create this page because I felt too proud to ask for help, but the truth is at this stage i don't know how much longer my body will allow me to stay alive in this rapidly declining state. This is the lowest weight I have been since I had pnuemonia 3 years ago(following a course of anti depressants i reluctantly took which weakened my immune system further), and i don't even recognise myself anymore. My face is jaundiced from the liver being full of toxins and not being able to be eliminated. The bags under my eyes could sink a thousand ships with their heaviness. The hollows of my cheeks are so prominent and when I attempt to smile, it physically hurts. Who am I? I want to be that exuberant, happy go lucky, full faced youthful, abundantly-charged full of energy individual I have briefly been or only seen in my dreams. Not this deathly exhausted, yellowed, lacklustre, aching, scared and weary 24 year old. I don't want to accept I'll be like this forever.
I apologise for the long winded and perhaps incomprehensible nature of this essay, however my mind is not in the best way in terms of functioning right now. I do hope you, reader, can gather some sense in all of this and I will truly appreciate from the bottom of my heart any donation you can give, which will help towards the cost of my treatment at Breakspear. I should be getting my first consultation with them shortly as soon as they process my information. I will update this campaign as often as possible with the plans they have for me and any new results from tests that come to light.
I just want to go outside again and truly experience the world. I'd like to study again and finally gain that degree, go travelling, marry and have children, volunteer with charitable organisations, socialise with friends, take up new hobbies and reignite old ones such as singing and designing(i used to enjoy singing at public events and creating illustrations to sell). I just want to function normally again, I want to smile and laugh and know what true energy, joy, and pain free living feels like. What is it like not to wake up feeling like I've been kicked and punched and not slept a wink despite sleeping for 8+ hours? What does it feel like not to choke whilst eating or experience pain, nausea and burning, because i really can't remember those days? What does it feel like to be able to not worry about the nearest, accessible toilet because my attacks are so sporadic and unpredictable? Simple things most people take for granted.
It is my promise to any donors, that so wish to receive, customised illustrations(providing i make a remarkable recovery).
Like with anything, there are no guarantees, so although i am pinning all of my hopes on this specialist clinic.... Not everyone responds in the same way to treatment. There is a 50% chance of getting better and a 50% chance of getting worse. However the only alternative is not receiving any treatment and getting worse and dying anyway. I have to take this last chance, this last hope. Please join me on this. God bless all who join me on my journey.
Please subscribe to the updates to see new research, articles and information on my journey. I will be hopefully creating diaries/video blogs and more.
Thank you.
*References not already listed*
-> https://breakspearmedical.com/
->http://www.openmedicinefoundation.org/the-end-mecfs-project/
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