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Rachel's story (by Helen Gordon):
My 27 year old daughter, Rachel, has been ill for 12 years; nearly half her life.
She was formally diagnosed with Myalgic Encephalomyelitis( ME), commonly known as Chronic Fatigue Syndrome (CFS) in 2017. In December 2017, we discovered through private testing that she has chronic Lyme disease as well as 5 co- infections. Lyme disease is transmitted by infected animals and insects, not just deer, and left untreated can affect every part of the body. Rachel was relieved to finally have a diagnosis that explained all her symptoms and she has now embarked upon a herbal approach which has proved to be effective with others with chronic Lyme disease.
However, another kind of nightmare has descended. The thinking behind the treatment plan is that as the bacteria die off they release their toxins in the body, worsening all symptoms; the Herxheimer reaction which can last for months for those who have been ill for so long. Rachel has had to abandon her studies at the Royal College of Art and is unable to work or look after herself. She has been fighting for Personal Independence Allowance for the last 9 months and having been refused it twice, she is now waiting for her case to be heard at a Tribunal; another few months wait and even then she may not win her case.
Chronic Lyme disease is not acknowledged in this country. If you haven't had a diagnosis then you can't have Lyme disease. However, only about 40% of Lyme disease sufferers develop the tell tale bullseye rash, which was the case for Rachel, and UK test accuracy can be as low as 10% . As far as the NHS is concerned, Rachel's private tests are inaccurate, unreliable and irrelevant; they will not investigate further. In any case, the only possible treatment option would be long-term antibiotics; for an antibiotic-resistant bacteria this often results in later relapse into more severe illness. Consequently, Rachel has an official diagnosis of Chronic Fatigue Syndrome, best advice from the specialist ME clinic being ' Some people get better and some don't,' whilst her actual diagnosis is discredited and ignored.
As Lyme Disease suppresses the immune system, sufferers are vulnerable to other infections and Rachel has a mould infection amongst others. This causes her hair to fall out, severe headaches and congestion to the point where she suffers hearing loss, as well as affecting her immune system. She has been advised that she will not get better if she remains in an environment with mould. Most houses have some degree of mould, including ours, and neither family nor friends can offer long-term alternative healthy accommodation. So for the last month Rachel has been living in a tent in the garden.
However, this won't be possible in the winter. There are small but significant signs that the herbal approach and living outside are having positive effects but recovery could take many more months; a Lyme sufferer group report that recovery can take from 7 months-to 4 or more years. Many give up due to despair or lack of support and some commit suicide but Rachel has had an extraordinarily positive attitude and will to recover, to live. She has a wonderful mentor who has suffered and recovered from the same health conditions and is supporting others, for no charge, on this very challenging journey back to health.
We would really appreciate your support for this fundraising event. The money raised will go toward her expensive herbal protocol and healthy accommodation.
With hope and gratitude
Helen and Rachel
A quote from Dr Kenneth Liegner:
“ In the fullness of time, the mainstream handling of chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
Dr. Kenneth Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. He is currently a member of the Board of Directors of The International Lyme and Associated Diseases Society (I.L.A.D.S. www.ILADS.org) and is a member of the Association of American Physicians and Surgeons.
Any excess funds will go to help other Lyme disease sufferers.
We are also organising a Summer Ball - Rags and Riches - Saturday 14th July to raise funds to HELP RACHEL HEAL.
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Julie Stone started crowdfunding
Leave a message of support
Jan 22, 2019
Oct 25, 2018
Rachel, I hope you continue getting better! Keep believing!
Alex and chris
Jul 21, 2018
Best wishes Rachel
Jul 18, 2018
wilma de Jong
Jul 16, 2018
Sending you much love and hope for recovery
Jul 14, 2018
wish you better and lots of love
Roger and Pat Tarring
Jul 12, 2018
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