Bliss' fight with Lyme Disease& CFS
Donation protected
Help Bliss fight Lyme Disease and CFS
Hi my name is Bliss and I’m 24 years old and thank you for taking the time to read my story.
I have made the difficult decision to set up this GoFundMe page to help raise funds and awareness for my ongoing treatment for Chronic Lyme Disease and Chronic Fatigue Syndrome – my parents and boyfriend will tell you my story below:
In 2012 Bliss’ Dad was diagnosed with Lyme Disease and CFS/ME forcing him to take ill-health retirement in order to focus on making a good or as near a full recovery from both as possible. This was a really difficult time for the family and coincided with Bliss commencing a Dance Degree at Leeds Beckett University. Her Dad having no private healthcare had no option but to self fund his treatment by using his pension lump sum as there was no available assistance from the NHS for the chronic conditions.
Whilst her Dad was dealing with the illness in 2014 unknown to her Dad and Mum Bliss started to feel unusually tired and worn down. Being very busy with her course, she didn’t think this out of the ordinary and put it down to the demands and pressures of completing a dance degree where daily practical rehearsals and routines followed by hours every night writing essays were the norm.
In March 2015 Bliss was diagnosed with CFS/ME, but to her credit and through determination and perseverance she was able to complete her degree and received a 2:1 BA (Hons) in July 2015.Over the coming months she started to improve whilst undergoing Lymphatic Treatment from Dr Ray Perrin who was already treating her Dad. Although not well enough to start her teaching training course as she had intended , she was able to lead a restricted life with her activities heavily paced.
In March 2017 however, things started to change. Daily short walks became more strenuous and tiring, everyday tasks such as preparing meals, watching television, reading, listening to music and podcasts became increasingly difficult. By this point, we were now concerned that a second member of the family may have contracted Lyme Disease. Whilst her GP was supportive, he was governed by the NHS protocols for Chronic Lyme Disease which meant our only option was to take Bliss to Breakspear Medical, a private hospital in Hemel Hempstead specialising in environmental illnesses and where her Dad had been a patient since 2012.
In February 2018 with her Dad making a good recovery from the illnesses and now Bliss’ full-time Carer, we took her to Breakspear to undergo a range of tests to ascertain exactly what Bliss was suffering from. Our suspicions were confirmed and she was diagnosed with Chronic Lyme Disease, and a series of co-infections including Babesia, Bartonella, Yersinia, Ehrlichia and Mycoplasma as well as HSV 1&2 and Epstein Barr Virus. We were all taken aback by the fact that she not only had Lyme like her Dad but that the list of co-infections was so long and the levels of bacteria so very high intimating infection many years prior.
Lyme disease is caused by Borrelia, a spirochete bacteria transmitted by a tick bite and is the most common borne infectious disease in the northern hemisphere. Ticks carrying Lyme disease are common in many parts of the United Kingdom, particularly in woodland or heath-land areas but disease carrying ticks can also be found in towns, cities and gardens. Lyme disease affects people in many different ways, but in the majority of cases like Bliss’,it can go undetected for months or even years and the longer undetected and untreated the harder it is to combat and overcome. At this stage the disease can affect each system and organ within the body developing much more serious symptoms.
Currently some of Bliss’ symptoms include
1. Extreme fatigue- Bliss is currently bed bound and has been for months and requires constant care throughout the day. This includes support in sitting her up to get out of bed into her wheelchair, feeding throughout all meals and also being given a daily wash and taken to the toilet.
2. Nausea.
3. Vibrations throughout the body and headaches.
4. Muscle pain and de-conditioning.
5. Cognitive problems such as memory issues, word finding difficulties and ‘brain fog’.
6. Sensitivity to light and sound which has resulted in Bliss not listening to music, Headspace or watching television for the past nine months.
Whilst awareness does seem to be growing in regards to the dangers of Lyme Disease, many people, including ourselves ,have experienced minimal support and treatment from the NHS in seeking to receive a diagnosis and then overcoming the illness. By supporting this fund, we can continue to fund the treatment that Bliss so desperately needs as there continues to be no provision through the NHS for someone in Bliss’ position. Treatment over the next twelve months will cost £20,000 and will include the following:
· Regular 3 monthly cycles of the Persister’s Protocol for Lyme and Co-infections
· Regular 3 monthly cycles of additional Medication and Supplements for Viruses and Mitochondrial issues
· Regular 3 monthly cycles of Immunotherapy to address food sensitivities and nuclear antigens
· Weekly treatment of Lymphatic Massage and Cranial Work
· Consultations with Hospital Doctor and on-going tests to evaluate progress and monitor response to Borrelia and Co-infections
Before Lyme Disease became an everyday fact of life for the family, Bliss was a larger-than-life person, full of energy, living life to the max and it breaks all our hearts to see what this disease has and continues to do to her especially after her Dad’s experience. Thank you for taking the time to read our page and to consider donating. As a family we have learnt to appreciate the small things in life and to appreciate that whilst illness remains at our door we are still here fighting. Whether or not you are able to donate, your support is needed just as much to raise awareness about this terrible disease. Bliss remains determined to get her life back and with all our support we remain hopeful that in the not too distant future we will have our exuberant, energetic and extrovert Bliss back.
Thank you
Barry, Cath, Clark and Phil (& Bliss)
For more information on Lyme Disease please look at:
http://lymediseaseuk.com
Hi my name is Bliss and I’m 24 years old and thank you for taking the time to read my story.
I have made the difficult decision to set up this GoFundMe page to help raise funds and awareness for my ongoing treatment for Chronic Lyme Disease and Chronic Fatigue Syndrome – my parents and boyfriend will tell you my story below:
In 2012 Bliss’ Dad was diagnosed with Lyme Disease and CFS/ME forcing him to take ill-health retirement in order to focus on making a good or as near a full recovery from both as possible. This was a really difficult time for the family and coincided with Bliss commencing a Dance Degree at Leeds Beckett University. Her Dad having no private healthcare had no option but to self fund his treatment by using his pension lump sum as there was no available assistance from the NHS for the chronic conditions.
Whilst her Dad was dealing with the illness in 2014 unknown to her Dad and Mum Bliss started to feel unusually tired and worn down. Being very busy with her course, she didn’t think this out of the ordinary and put it down to the demands and pressures of completing a dance degree where daily practical rehearsals and routines followed by hours every night writing essays were the norm.
In March 2015 Bliss was diagnosed with CFS/ME, but to her credit and through determination and perseverance she was able to complete her degree and received a 2:1 BA (Hons) in July 2015.Over the coming months she started to improve whilst undergoing Lymphatic Treatment from Dr Ray Perrin who was already treating her Dad. Although not well enough to start her teaching training course as she had intended , she was able to lead a restricted life with her activities heavily paced.
In March 2017 however, things started to change. Daily short walks became more strenuous and tiring, everyday tasks such as preparing meals, watching television, reading, listening to music and podcasts became increasingly difficult. By this point, we were now concerned that a second member of the family may have contracted Lyme Disease. Whilst her GP was supportive, he was governed by the NHS protocols for Chronic Lyme Disease which meant our only option was to take Bliss to Breakspear Medical, a private hospital in Hemel Hempstead specialising in environmental illnesses and where her Dad had been a patient since 2012.
In February 2018 with her Dad making a good recovery from the illnesses and now Bliss’ full-time Carer, we took her to Breakspear to undergo a range of tests to ascertain exactly what Bliss was suffering from. Our suspicions were confirmed and she was diagnosed with Chronic Lyme Disease, and a series of co-infections including Babesia, Bartonella, Yersinia, Ehrlichia and Mycoplasma as well as HSV 1&2 and Epstein Barr Virus. We were all taken aback by the fact that she not only had Lyme like her Dad but that the list of co-infections was so long and the levels of bacteria so very high intimating infection many years prior.
Lyme disease is caused by Borrelia, a spirochete bacteria transmitted by a tick bite and is the most common borne infectious disease in the northern hemisphere. Ticks carrying Lyme disease are common in many parts of the United Kingdom, particularly in woodland or heath-land areas but disease carrying ticks can also be found in towns, cities and gardens. Lyme disease affects people in many different ways, but in the majority of cases like Bliss’,it can go undetected for months or even years and the longer undetected and untreated the harder it is to combat and overcome. At this stage the disease can affect each system and organ within the body developing much more serious symptoms.
Currently some of Bliss’ symptoms include
1. Extreme fatigue- Bliss is currently bed bound and has been for months and requires constant care throughout the day. This includes support in sitting her up to get out of bed into her wheelchair, feeding throughout all meals and also being given a daily wash and taken to the toilet.
2. Nausea.
3. Vibrations throughout the body and headaches.
4. Muscle pain and de-conditioning.
5. Cognitive problems such as memory issues, word finding difficulties and ‘brain fog’.
6. Sensitivity to light and sound which has resulted in Bliss not listening to music, Headspace or watching television for the past nine months.
Whilst awareness does seem to be growing in regards to the dangers of Lyme Disease, many people, including ourselves ,have experienced minimal support and treatment from the NHS in seeking to receive a diagnosis and then overcoming the illness. By supporting this fund, we can continue to fund the treatment that Bliss so desperately needs as there continues to be no provision through the NHS for someone in Bliss’ position. Treatment over the next twelve months will cost £20,000 and will include the following:
· Regular 3 monthly cycles of the Persister’s Protocol for Lyme and Co-infections
· Regular 3 monthly cycles of additional Medication and Supplements for Viruses and Mitochondrial issues
· Regular 3 monthly cycles of Immunotherapy to address food sensitivities and nuclear antigens
· Weekly treatment of Lymphatic Massage and Cranial Work
· Consultations with Hospital Doctor and on-going tests to evaluate progress and monitor response to Borrelia and Co-infections
Before Lyme Disease became an everyday fact of life for the family, Bliss was a larger-than-life person, full of energy, living life to the max and it breaks all our hearts to see what this disease has and continues to do to her especially after her Dad’s experience. Thank you for taking the time to read our page and to consider donating. As a family we have learnt to appreciate the small things in life and to appreciate that whilst illness remains at our door we are still here fighting. Whether or not you are able to donate, your support is needed just as much to raise awareness about this terrible disease. Bliss remains determined to get her life back and with all our support we remain hopeful that in the not too distant future we will have our exuberant, energetic and extrovert Bliss back.
Thank you
Barry, Cath, Clark and Phil (& Bliss)
For more information on Lyme Disease please look at:
http://lymediseaseuk.com
Fundraising team (4)
Bliss Geden
Organizer
England
Phil Davies
Team member
Cath Geden
Team member
Clark Geden
Team member
