Sarah’s Chronic Lyme Disease Fight
Donation protected
Hi my name is Sarah and I have made the very difficult decision to create this page, as I greatly need to raise funds for life saving treatment in the USA.
I have been diagnosed with Lyme disease, which has caused me a great deal of suffering over the last five years, changing my entire world and life dramatically.
Lyme and coinfections have caused me to experience many unpleasant symptoms: brain fog, excruciating head and neck pain, night/day drenching sweats, eye problems, memory problems, dizziness/light-headedness, gastrointestinal problems, excruciating pain, nerve pain, tingling, extreme fatigue, sensitivity to light, noises, temperature dysregulation, disassociation (feeling like you’re on another planet), muscle twitches, weakness, confusion, mood swings, buzzing and tingling in my extremities, problems with word retrieval and articulation, seizures, anxiety, OCD... the list goes on!
I have had little to no help on the NHS, due to a lack of knowledge and understanding of Lyme Disease within the medical profession and was forced to seek treatment from a specialist in the USA.
Over the years I have been to many specialists here to try to get to the bottom of my frightening symptoms, all of which have labelled me with different illnesses, under different umbrella categories, within each area of each specialism. One diagnosis that really stuck was Postural Orthostatic Tachycardia Syndrome (POTS), whereby my heart rate is sporadically thrown into low to high rhythmic beats, when standing, where I can feel either like I’m going to have a heart attack, to a complete faint like episode. This diagnosis was received from a private cardiologist, after this I had further investigative tests on my heart with the NHS, which then resulted in open heart surgery, at the age of 28, to remove a small non-cancerous tumour, which I am now certain was caused by Lyme and Bartonella (another tick-borne infection).

Unfortunately, the surgery did not resolve my POTS, and my Doctor in the USA believes it will continue to be a problem as a direct result of the Lyme infection and several co-infections that I have picked up from a tick bite - if not treated aggressively.
I have been on and off various medications for Lyme over the years to try to help my heart and physical functioning, in the hope of getting better. Last year (July 2017) I had a complete collapse in a nearby supermarket and a subsequent MRI revealed that I had a severe seizure and damage to my brain. My UK neurologist acknowledged that Lyme had caused this, but was at a loss as to what to do as there is no expertise here.

I sent the MRI results to my USA doctor who told me that my case is becoming more concerning to him and that I will now need more aggressive treatment, which will most likely to lead to IV therapy, as the oral medications I have been on are no longer adequate to get to the layers of infection and damage in my brain and my heart. The neurologist and my USA Lyme specialist both said I’m at a very high risk of another seizure, so I am now on multiple anti-seizure medications to try to prevent any further episodes.
Before my illness I was a happy go lucky woman in her 20’s, enjoying and living life to the fullest of my abilities. I was a qualified hairdresser and loved my job. Standing on my feet all day was part of life and I was always on the go. In January 2013 I moved to Australia to pursue a career in hairdressing there and start a new and exciting life. I loved every second of living there, and the opportunities that lay before me in my career path were so exciting. But soon after being there I fell ill and had to move back home to be cared for by my parents and loved by my gorgeous Golden retrievers who have never left my side since becoming ill, whether I’m laid up on the sofa or in bed.

Today, at the age of almost 30, my life is entirely different to the one I had before. Since my seizure last year I am now entirely bedbound and spend most of my time connecting with the ‘real world’ online in support groups and online forums. I miss real life human contact and struggle every day to get washed and bathed, and if I get out of the house it is to go to a hospital or doctor’s appointment with the help of my long-suffering parents.
My life has become very distressing, I am worried for my future, and my parent’s future - as they have invested everything they can afford to help me get better, but sustaining that has become much too difficult and stressful and I can’t bring myself to burden them any longer.
So far, many private consultations, tests, in the UK and many trips to the USA (including obtaining mediations whilst out there) have already cost us at least £50,000.
Because I have had Lyme and coinfections since birth it has spread to every part of my body, organs, bones, blood etc. So, it makes it extremely hard to treat once it becomes chronic. I will be looking at up to a year in America having Intravenous treatment, costing approximately $48,000 for just 9 months (as advised by my USA doctor). I may even need it for longer than that. Then there’s the cost of accommodation, regular appointments at the clinic, flights, lab work, a PICC line/Hickman insertion, supplements and all the other things that IV monitoring involves.
I have always been fiercely independent and have never been someone to ask for help, but I am terrified, lonely and despairing of what my future might look like if I don’t reach the USA for more intensive treatment, so I ask that you please look kindly upon my situation. I will do everything I can to honour the gift of hope that anyone here offers me, in reaching for my future again and fighting hard to battle this disease.
The new NICE guidelines are currently under review for the treatment of Lyme disease within the NHS system. The draft guidelines are out for consultation and unfortunately the proposals will not be helpful to people like me, as they are tailored more toward those who have only recently been infected. So, the expertise for long-term chronic sufferers remains out of country at this point in time, and to access that care it is all down to the individual to fund.
Currently my Doctor in the USA is a leading expert in Lyme Disease, he gets hundreds of people well every year, and brings many back from the brink. So if anyone can help me, he can.
Anything anyone could give or donate would be so greatly appreciated. I want nothing more than to live my life again and contribute to society, meet my future husband and settle down and have a family. My hopes and dreams are much like anyone else’s, the only difference is that I have huge financial challenges involved in getting me adequate medical care in order to pursue life again. I am saddened that the specialist care I need is not within my home country, nor is it available without cost to my parents - who have worked their entire lives and contributed to the system throughout their employment, but it is the reality that we face.
Thank you all for reading, and please take a few more minutes to read some information I have attached to help prevent others from going through the living hell that I have. Lyme is preventable, please take precautions when outdoors, and make sure to protect your pets too, as many of our beloved furry best friends get this illness too and that breaks my heart to know.
Thank you all,
Sarah xxx

I have been diagnosed with Lyme disease, which has caused me a great deal of suffering over the last five years, changing my entire world and life dramatically.
Lyme and coinfections have caused me to experience many unpleasant symptoms: brain fog, excruciating head and neck pain, night/day drenching sweats, eye problems, memory problems, dizziness/light-headedness, gastrointestinal problems, excruciating pain, nerve pain, tingling, extreme fatigue, sensitivity to light, noises, temperature dysregulation, disassociation (feeling like you’re on another planet), muscle twitches, weakness, confusion, mood swings, buzzing and tingling in my extremities, problems with word retrieval and articulation, seizures, anxiety, OCD... the list goes on!
I have had little to no help on the NHS, due to a lack of knowledge and understanding of Lyme Disease within the medical profession and was forced to seek treatment from a specialist in the USA.
Over the years I have been to many specialists here to try to get to the bottom of my frightening symptoms, all of which have labelled me with different illnesses, under different umbrella categories, within each area of each specialism. One diagnosis that really stuck was Postural Orthostatic Tachycardia Syndrome (POTS), whereby my heart rate is sporadically thrown into low to high rhythmic beats, when standing, where I can feel either like I’m going to have a heart attack, to a complete faint like episode. This diagnosis was received from a private cardiologist, after this I had further investigative tests on my heart with the NHS, which then resulted in open heart surgery, at the age of 28, to remove a small non-cancerous tumour, which I am now certain was caused by Lyme and Bartonella (another tick-borne infection).
Unfortunately, the surgery did not resolve my POTS, and my Doctor in the USA believes it will continue to be a problem as a direct result of the Lyme infection and several co-infections that I have picked up from a tick bite - if not treated aggressively.
I have been on and off various medications for Lyme over the years to try to help my heart and physical functioning, in the hope of getting better. Last year (July 2017) I had a complete collapse in a nearby supermarket and a subsequent MRI revealed that I had a severe seizure and damage to my brain. My UK neurologist acknowledged that Lyme had caused this, but was at a loss as to what to do as there is no expertise here.
I sent the MRI results to my USA doctor who told me that my case is becoming more concerning to him and that I will now need more aggressive treatment, which will most likely to lead to IV therapy, as the oral medications I have been on are no longer adequate to get to the layers of infection and damage in my brain and my heart. The neurologist and my USA Lyme specialist both said I’m at a very high risk of another seizure, so I am now on multiple anti-seizure medications to try to prevent any further episodes.
Before my illness I was a happy go lucky woman in her 20’s, enjoying and living life to the fullest of my abilities. I was a qualified hairdresser and loved my job. Standing on my feet all day was part of life and I was always on the go. In January 2013 I moved to Australia to pursue a career in hairdressing there and start a new and exciting life. I loved every second of living there, and the opportunities that lay before me in my career path were so exciting. But soon after being there I fell ill and had to move back home to be cared for by my parents and loved by my gorgeous Golden retrievers who have never left my side since becoming ill, whether I’m laid up on the sofa or in bed.
Today, at the age of almost 30, my life is entirely different to the one I had before. Since my seizure last year I am now entirely bedbound and spend most of my time connecting with the ‘real world’ online in support groups and online forums. I miss real life human contact and struggle every day to get washed and bathed, and if I get out of the house it is to go to a hospital or doctor’s appointment with the help of my long-suffering parents.
My life has become very distressing, I am worried for my future, and my parent’s future - as they have invested everything they can afford to help me get better, but sustaining that has become much too difficult and stressful and I can’t bring myself to burden them any longer.
So far, many private consultations, tests, in the UK and many trips to the USA (including obtaining mediations whilst out there) have already cost us at least £50,000.
Because I have had Lyme and coinfections since birth it has spread to every part of my body, organs, bones, blood etc. So, it makes it extremely hard to treat once it becomes chronic. I will be looking at up to a year in America having Intravenous treatment, costing approximately $48,000 for just 9 months (as advised by my USA doctor). I may even need it for longer than that. Then there’s the cost of accommodation, regular appointments at the clinic, flights, lab work, a PICC line/Hickman insertion, supplements and all the other things that IV monitoring involves.
I have always been fiercely independent and have never been someone to ask for help, but I am terrified, lonely and despairing of what my future might look like if I don’t reach the USA for more intensive treatment, so I ask that you please look kindly upon my situation. I will do everything I can to honour the gift of hope that anyone here offers me, in reaching for my future again and fighting hard to battle this disease.
The new NICE guidelines are currently under review for the treatment of Lyme disease within the NHS system. The draft guidelines are out for consultation and unfortunately the proposals will not be helpful to people like me, as they are tailored more toward those who have only recently been infected. So, the expertise for long-term chronic sufferers remains out of country at this point in time, and to access that care it is all down to the individual to fund.
Currently my Doctor in the USA is a leading expert in Lyme Disease, he gets hundreds of people well every year, and brings many back from the brink. So if anyone can help me, he can.
Anything anyone could give or donate would be so greatly appreciated. I want nothing more than to live my life again and contribute to society, meet my future husband and settle down and have a family. My hopes and dreams are much like anyone else’s, the only difference is that I have huge financial challenges involved in getting me adequate medical care in order to pursue life again. I am saddened that the specialist care I need is not within my home country, nor is it available without cost to my parents - who have worked their entire lives and contributed to the system throughout their employment, but it is the reality that we face.
Thank you all for reading, and please take a few more minutes to read some information I have attached to help prevent others from going through the living hell that I have. Lyme is preventable, please take precautions when outdoors, and make sure to protect your pets too, as many of our beloved furry best friends get this illness too and that breaks my heart to know.
Thank you all,
Sarah xxx
Organizer
Sarah Jackson
Organizer
