May is the month where globally Lyme Disease charities, researchers, treating doctors and patients come together to try to lobby governments, raise awareness and support one another with various initiatives. In so doing, collectively we hope to not only educate the general public about how to protect themselves from tick bites, but to also raise both awareness of this disease and to encourage donations for desperately needed research.
Heres my daughter and I in 2016 Taking a bit out of Lyme to raise awareness
In 2018, I completed my Msc dissertation research which involved analysing online questionnaires from 18 UK Lyme patients. This was a qualitative piece of research, which means I wasn’t interested in numbers and statistics, but instead, I wanted to understand in detail, the livid experiences of this group of individuals. Their stories were at times hard to read and through my analysis of their narratives
5 key themes emerged.
Theme 1. Dissatisfaction with mainstream medicine.
This exposed the difficulties of living with a contested disease where obtaining diagnosis and treatment was protracted and problematic. Many received a psychological explanation, where potential gender bias resulted in doctor/patient distrust, leading to the need for strong self-advocacy.
NO SINGLE RESPONDENT HAD AN OFFICIAL NHS DIAGNOSIS OF LYME DISEASE
Theme 2. ‘Controlling food’
Here the therapeutic use of Nutritional Therapy was highlighted, where “Food as Medicine” led to improved symptomology. Respondents demonstrated strong adherence and innovative strategies to offset oftentimes onerous and time consuming compliance demands. At times, in trying to ‘control’ ones food intake, dietary needs began to control peoples lives. However in living with this misunderstood disease, where so much can seem out of ones control, there was comfort from being in charge of a powerful therapeutic tool, plus it fostered a sense of unity and community amongst fellow patients.
Theme 3. ‘CAM’- a work in progress (CAM = Complimentary and Alternative Medicine
This theme revealed that Lyme patients are a well-researched patient group, who often experienced dissatisfaction due to consulted practitioners’ lack of knowledge, where they were presented with overly complicated and generic NT protocols.
Theme 4. ‘A life changed’
This theme revealed the extent to which lives have been devastated by years of chronic disease with feelings of loss, invisibility, isolation and altered and fractured relationships.
Theme 5. Financial issues.
All respondents reported financial sacrifices and difficulties, including debt, loans, and borrowing, where lost earnings due to disability, left some unable to afford treatment.
Are you a Lyme disease warrior?
Does any of this resonate with you? Do any of these themes seem familiar? Have you experienced any of these issues? I’d love to hear from you, and for you to share your experiences, lest we not be ignored and forgotten again.
I admit to it…..Confirmation bias! (Was this just in my research?)
I can’t say it was the most well written piece of research, and undoubtedly, despite my best efforts, I would have bought bias to it. Despite this, I do believe that it offers powerful insight into the difficulties faced by UK Lyme patients, something which has not been hitherto researched in the UK. It also revealed, that in this patient group, nutrition represents a vital part of the journey to recovery.
I finished writing my dissertation just as the NICE draft guidelines for Lyme Disease were published. Here, there was not a single mention of dietary or supplement interventions, and yet my snapshot revealed that all respondents reported improved symptoms through Nutritional Therapy. However this was hardly surprising given the guidelines barely acknowledge the existence of Chronic Lyme Disease.
The full NICE guidelines were finally published in 2018. The only positive I can take from these is that patients recently bitten, who are lucky enough to have a GP who actually recognises the tell tale bulls eye rash or is prepared to accept after a differential diagnosis, that symptoms and exposure mean its likely that you have been bitten, you are now more likely to get 3 weeks of an effective antibiotic regime, and then hopefully, a further 3 weeks of treatment should symptoms persist.
But beyond this, very little has changed!
Unfortunately patients with a chronic infection, who were not treated in a timely fashion, are mostly denied a test, denied treatment and are left high and dry. They then begin the merry go round of endless trips to different “specialists” who work in their own area of speciality, where no one stops to look at you as a whole and say…
“Hang on a minute, this person has multiple symptoms involving multiple body symptoms…what is it that could be causing this systemic ill health?”
To be honest, this is probably an unrealistic expectation. Modern medicine does not work like this and probably never will. That’s why as a Nutritional Therapist, my training enables me to adopt a Functional Medicine approach. If your not familiar with this here is a definition:
Functional Medicine is a systems biology–based approach that focuses on identifying and addressing the root cause of disease.
As such I don’t look to your “illness”, but instead I gather detailed information about your symptoms, your history, your journey to ill health and together we try to unravel what what could be the underlying cause.
Any way I digress……
Tomorrow I will be wearing Lime Green to raise awareness. Check yourself when you’ve been out walking, lying on grass in the garden, playing sports on grass. Ticks are everywhere and can transmit more other infections(for which there are no available NHS tests!) Estimates on numbers of ticks infected varies, showing anything from 5 – 40%. Check your children, behind the ears, in their hair line, in their armpits, between their toes, everywhere! And don’t forget check your little furry 4-legged friends too! They could carry infected ticks into the house.
Tomorrow I will be wearing Lime Green to show support for all the doctor and researchers, some of whom put their necks on the lines treat patients and to speak the truth.
Tomorrow I will be wearing Lime Green to show my support for the chronically sick. Many are lonely, stuck in bed, disabled, in constant pain, wheel-chair dependant, forgotten, dismissed and ignored.
Tomorrow I will be wearing Lime Green to show my support for my daughter who’s resilience and determination is unfathomable.
I have included below links to some of the leading UK lyme charities. It would be amazing if you could think about making a donation, big or small….as a leading supermarket int the UK says….. Every Little Helps!
UK Lyme Charities
Vis a vis symposium – Hosting conferences to help educate and disseminate research to UK Docters.
Lyme Disease Uk Support – Supporting UK Patients through sharing of information on treatment and offering a FB support group.
About Time for Lyme – Raising awareness of Tick hotspots and removal.
Lyme Disease Action – Providing information for Patients, researchers and doctors. Working to produce GP training and explanation of guidelines.
Caudwell LymeCo Charity – Raising awareness and pushing UK government to commit to much needed funding for research.
Lyme Aid UK – Helping raise funds for UK patients to get grants to pay for overseas testing