Help Sophia Get Well
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Hello everyone,
This page was originally set up to get some help towards funding my Lyme Disease treatment in America. It is also to help with ongoing private treatment in the UK for my chronic illness.
I have been ill for over 6 years now and have suffered with chronic neuropathic pain for about 10. Despite our very best efforts, investigating every possible treatment pathway and spending many £000’s on appointments, scans and tests, we made very little headway here in the UK. Because the NHS doesn't recognise or doesn't fully understand the complexities of my illness, I had no option but to travel to America to get the expert knowledge and treatment I needed to start the process of hopefully getting me well again. Since returning, I have had very little understanding or support from the NHS and as each month goes by, the disease continues to progress and my symptoms get more severe. I am getting sicker and weaker.
The story so far
I graduated from Sheffield University with a Speech & Language degree in 2012 and started working in Cornwall where I lived with my partner, but shortly after but had to give all that up when I became sick. I am now 30 and still suffering with chronic life-changing pain. Try to imagine burning, stabbing, cramping, and deep intense aching pain all over your body 24 hours a day, with skin sensitivity so extreme that even soft cotton seamless clothes are painful and sheets touching me feels like sandpaper. I have tried many pain meds but nothing so far that we've tried gives me any relief or respite. About 6 years ago I began to experience a lot of other symptoms on top of the pain: chronic fatigue, muscle aches, migraines, dizziness, sound and light sensitivity, racing heartbeat, gut issues and memory and concentration problems. NHS doctors were baffled and could not offer an explanation, passing me from pillar to post and refusing to acknowledge that I had Lyme disease. I can now no longer stand up and can only sit for a short period in my wheelchair with a head rest due to extreme dizziness and fatigue. I have not been able to go outside for over a year and spend all day lying on my bed in a darkened room without anything to distract me as I can't tolerate sound, light or visual stimulation. I really miss my life, my friends and my independence.
Getting tested for Lyme Disease
I was tested for Lyme Disease in 2014. My first test came back positive – which was a shock but at least I knew what I was dealing with. However, a second test was described as ‘inconclusive’, casting doubt on the first test and meaning no access to long term antibiotic treatment. Since then trying to get help has been exhausting and expensive. (I have since discovered that the UK testing system is often inaccurate and that two of the positive bands from that second test were specific to Lyme disease. )
“PUBLIC HEALTH ENGLAND ADMITS ONLY 10% OF UK LYME DISEASE VICTIMS GET DIAGNOSED BY THE NHS EACH YEAR.” Caudwell-lyme.net
Due to the controversy around the accuracy of Lyme Disease testing here in the UK, we decided to get tested privately through an accredited German laboratory. This confirmed that not only do I have Lyme Disease but also several co-infections and viruses. The test also confirmed that my immune system is very suppressed. The NHS consistently refuses to recognise or act on these tests.
I have also since been diagnosed with POTS (postural orthostatic tachycardia syndrome) which is often caused by Lyme.
How Lyme Disease has affected me
My health is very poor and I'm continuing to deteriorate. Contracting multiple chronic infections has left me almost totally debilitated and bedbound. My immune system is severely compromised, my central nervous, autonomic and digestive systems have been severely affected and my neuropathic pain levels are extreme, plus I have terrible vertigo which makes me feel very unsafe. I find it very difficult to interact due to being overwhelmed by stimulation of any kind. I am often described by medical professionals as the most complex patient they have ever had - which is not helpful to me.
Before all this happened I was fit and healthy. I loved running, swimming and boxing and had an active social life and a future to look forward to with my partner and our pet dachshund in Cornwall.
What we've done so far
My amazing Mum gave up work to research everything there is to know about the many aspects of my illness. After thoroughly weighing up all the options in terms of clinics/specialists abroad (because there are NO lyme specialists within the NHS), we felt that the Stram Centre in the USA would be able to help me. Thanks to some amazing fundraising by my lovely family and friends we travelled there in October 2016 where I received intravenous and oral antibiotics, vitamin infusions, antimicrobial infusions and holistic therapies.
When we returned to the UK the plan was for me to continue with oral antibiotics but, due to becoming so sensitive after the intensive treatment, I had to stop taking them shortly afterwards and have since then been working with private therapists and nutritionists in the UK (who understand lyme and chronic fatigue) to reduce the load on my immune system. Unfortunately, I have not yet made the improvements we are all desperate for and the intensity of the pain has continued to increase, causing so much stress on my body, and we are getting no help with this or with my chronic fatigue from the NHS.
The treatment I need now
2 years ago my pain became so severe I was admitted to the Royal Free Hospital in London for neurological testing. My Neurologist has diagnosed small fibre neuropathy akin to CIDP and has suggested a treatment that could help significantly with my pain and my POTS. As I am too sick to travel to London now, he asked a local Neurologist her in Gloucestershire to administer the treatment but he refused. We are still weighing up the risks of somehow getting me to London for this treatment. We are also working with a private pain doctor who is trialling a new treatment which we desperately hope will help soon.
Getting well again
I have lost so much over the past 6 years but still believe that, with access to the right treatment for my pain, gradual improvement is possible. Once that is under control, I will be more mobile and able to see the specialists I need to see for my other conditions. I am absolutely desperate to get some quality of life back. I don't expect a full recovery and would be so happy to be able to enjoy the simple things in life like going to the beach, watching films and having cuddles - without pain. The picture below is me in my chair at the park with Copper 4-5 years ago and I would love to get back to that as a starting point. Although I am now incredibly weak physically, I have a very strong mind and I’m determined to get through this incredibly difficult period of my life and start looking forward again.
Thank you for your support and for helping me on this journey.
My mum regularly updates this page (as I can no longer type or use my phone) so please check back in when you can.
Thank you so much
xx
*Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by the Borrellia bacteria. It can be transmitted to humans by the bite of an infected tick, flea or biting fly. Symptoms include feeling flu-like, extreme tiredness, muscle pain & weakness, joint pain, upset digestive system, headache, disturbances of the central nervous system and insomnia. Treatment is with antibiotics and is most effective if started as early as possible in the disease. Chronic Lyme Disease is much more difficult to treat and involves longer courses of antibiotics, combinations of antibiotics and additional therapies.
For more information on lyme disease please visit ILADS, Lyme Disease UK and caudwell-lyme.net
Lyme Disease Guidelines – an evidence based critique by Caudwell-lyme.net explains the flaws in the NHS guidelines on the testing, diagnosis and treatment of Lyme Disease.
This page was originally set up to get some help towards funding my Lyme Disease treatment in America. It is also to help with ongoing private treatment in the UK for my chronic illness.
I have been ill for over 6 years now and have suffered with chronic neuropathic pain for about 10. Despite our very best efforts, investigating every possible treatment pathway and spending many £000’s on appointments, scans and tests, we made very little headway here in the UK. Because the NHS doesn't recognise or doesn't fully understand the complexities of my illness, I had no option but to travel to America to get the expert knowledge and treatment I needed to start the process of hopefully getting me well again. Since returning, I have had very little understanding or support from the NHS and as each month goes by, the disease continues to progress and my symptoms get more severe. I am getting sicker and weaker.
The story so far
I graduated from Sheffield University with a Speech & Language degree in 2012 and started working in Cornwall where I lived with my partner, but shortly after but had to give all that up when I became sick. I am now 30 and still suffering with chronic life-changing pain. Try to imagine burning, stabbing, cramping, and deep intense aching pain all over your body 24 hours a day, with skin sensitivity so extreme that even soft cotton seamless clothes are painful and sheets touching me feels like sandpaper. I have tried many pain meds but nothing so far that we've tried gives me any relief or respite. About 6 years ago I began to experience a lot of other symptoms on top of the pain: chronic fatigue, muscle aches, migraines, dizziness, sound and light sensitivity, racing heartbeat, gut issues and memory and concentration problems. NHS doctors were baffled and could not offer an explanation, passing me from pillar to post and refusing to acknowledge that I had Lyme disease. I can now no longer stand up and can only sit for a short period in my wheelchair with a head rest due to extreme dizziness and fatigue. I have not been able to go outside for over a year and spend all day lying on my bed in a darkened room without anything to distract me as I can't tolerate sound, light or visual stimulation. I really miss my life, my friends and my independence.
Getting tested for Lyme Disease I was tested for Lyme Disease in 2014. My first test came back positive – which was a shock but at least I knew what I was dealing with. However, a second test was described as ‘inconclusive’, casting doubt on the first test and meaning no access to long term antibiotic treatment. Since then trying to get help has been exhausting and expensive. (I have since discovered that the UK testing system is often inaccurate and that two of the positive bands from that second test were specific to Lyme disease. )
“PUBLIC HEALTH ENGLAND ADMITS ONLY 10% OF UK LYME DISEASE VICTIMS GET DIAGNOSED BY THE NHS EACH YEAR.” Caudwell-lyme.net
Due to the controversy around the accuracy of Lyme Disease testing here in the UK, we decided to get tested privately through an accredited German laboratory. This confirmed that not only do I have Lyme Disease but also several co-infections and viruses. The test also confirmed that my immune system is very suppressed. The NHS consistently refuses to recognise or act on these tests.
I have also since been diagnosed with POTS (postural orthostatic tachycardia syndrome) which is often caused by Lyme.
How Lyme Disease has affected me
My health is very poor and I'm continuing to deteriorate. Contracting multiple chronic infections has left me almost totally debilitated and bedbound. My immune system is severely compromised, my central nervous, autonomic and digestive systems have been severely affected and my neuropathic pain levels are extreme, plus I have terrible vertigo which makes me feel very unsafe. I find it very difficult to interact due to being overwhelmed by stimulation of any kind. I am often described by medical professionals as the most complex patient they have ever had - which is not helpful to me.
Before all this happened I was fit and healthy. I loved running, swimming and boxing and had an active social life and a future to look forward to with my partner and our pet dachshund in Cornwall.
What we've done so far
My amazing Mum gave up work to research everything there is to know about the many aspects of my illness. After thoroughly weighing up all the options in terms of clinics/specialists abroad (because there are NO lyme specialists within the NHS), we felt that the Stram Centre in the USA would be able to help me. Thanks to some amazing fundraising by my lovely family and friends we travelled there in October 2016 where I received intravenous and oral antibiotics, vitamin infusions, antimicrobial infusions and holistic therapies.
When we returned to the UK the plan was for me to continue with oral antibiotics but, due to becoming so sensitive after the intensive treatment, I had to stop taking them shortly afterwards and have since then been working with private therapists and nutritionists in the UK (who understand lyme and chronic fatigue) to reduce the load on my immune system. Unfortunately, I have not yet made the improvements we are all desperate for and the intensity of the pain has continued to increase, causing so much stress on my body, and we are getting no help with this or with my chronic fatigue from the NHS.
The treatment I need now
2 years ago my pain became so severe I was admitted to the Royal Free Hospital in London for neurological testing. My Neurologist has diagnosed small fibre neuropathy akin to CIDP and has suggested a treatment that could help significantly with my pain and my POTS. As I am too sick to travel to London now, he asked a local Neurologist her in Gloucestershire to administer the treatment but he refused. We are still weighing up the risks of somehow getting me to London for this treatment. We are also working with a private pain doctor who is trialling a new treatment which we desperately hope will help soon.Getting well again
I have lost so much over the past 6 years but still believe that, with access to the right treatment for my pain, gradual improvement is possible. Once that is under control, I will be more mobile and able to see the specialists I need to see for my other conditions. I am absolutely desperate to get some quality of life back. I don't expect a full recovery and would be so happy to be able to enjoy the simple things in life like going to the beach, watching films and having cuddles - without pain. The picture below is me in my chair at the park with Copper 4-5 years ago and I would love to get back to that as a starting point. Although I am now incredibly weak physically, I have a very strong mind and I’m determined to get through this incredibly difficult period of my life and start looking forward again.
Thank you for your support and for helping me on this journey.
My mum regularly updates this page (as I can no longer type or use my phone) so please check back in when you can.
Thank you so much
xx
*Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by the Borrellia bacteria. It can be transmitted to humans by the bite of an infected tick, flea or biting fly. Symptoms include feeling flu-like, extreme tiredness, muscle pain & weakness, joint pain, upset digestive system, headache, disturbances of the central nervous system and insomnia. Treatment is with antibiotics and is most effective if started as early as possible in the disease. Chronic Lyme Disease is much more difficult to treat and involves longer courses of antibiotics, combinations of antibiotics and additional therapies.
For more information on lyme disease please visit ILADS, Lyme Disease UK and caudwell-lyme.net
Lyme Disease Guidelines – an evidence based critique by Caudwell-lyme.net explains the flaws in the NHS guidelines on the testing, diagnosis and treatment of Lyme Disease.
Organizer
Sophia Galpin
Organizer