Lyme Disease Resources
Explore below for more information about my Lyme Disease story, and resources that might help you.
My Lyme Disease Story
In 2018, when I was working in woodlands across the country, I became suddenly very ill, with a whole host of debilitating, systemic symptoms, and developed severe reactions to foods, chemicals etc. Initially, in common with many who develop Lyme, I faced a lot of difficulty in getting diagnosis and treatment, and was not able to find any answers about what was happening to me, and there was no medical help available. It was 8 months before I realised that I had developed Mast Cell Activation Syndrome, as a result of my own research, and a further 2 years before I was finally diagnosed with Lyme Disease, as the root cause of this.
Image Credit Erik Karits from Pixabay
What is Lyme Disease?
What is Lyme Disease?
Lyme Disease is when a person becomes infected with Borrelia Burgdorferi bacteria, which is carried by ticks. Ticks carrying Lyme Disease are now widespread across the whole of the British Isles, and are active all year round, not just in Spring and Summer. Anywhere where there are wild animals or birds, there can be ticks. When ticks are not attached to a living animal or bird, they hide in long grass, leaf mould, under stones, on logs and branches, anywhere were they can rest, waiting for another living creature to brush past, at which point they attach themselves to that host. You can be bitten by ticks anywhere, including in your own back garden, and they have even be found in sand dunes on beaches. This is why it is so crucial for people to become more tick-aware.
Ticks can be very small – many people are bitten by nymph ticks, which are the size of a poppy seed - see the photo on the right. This means it is possible to be bitten by a tick and not even realise, as they are so small you would never spot them, particularly in hairlines or skin folds. This is why many people don’t remember getting bitten. Many people suffer for years with mysterious Chronic Illness, and then discover that they have Lyme Disease, so it is important to consider this as a possibility.
Image Credit Getty Images Istock photo RobertAx
Lyme Disease Diagnosis
Testing and Diagnosis
Testing for Lyme Disease is very controversial and problematic, and therefore it is difficult to get a definitive diagnosis. There is currently no test which is considered to be accurate for diagnosing Lyme Disease, and the NICE Guidelines reflect this, stating that diagnosis should not be ruled out if tests are negative but there is high clinical suspicion of Lyme.
The NHS Diagnostic and Treatment Criteria for Lyme Disease were updated in 2018, to reflect new understanding of the disease, but many GP’s are not aware of this, and are following old protocols which are inadequate. It is vitally important when dealing with Lyme Disease that you educate yourself and advocate for yourself.
There is an RCPG Toolkit for GPs which can help them to help you, and it is a good idea to take this with you to your appointment. https://elearning.rcgp.org.uk/mod/book/view.php?id=12535
A classic bullseye rash is diagnostic in itself, and you do NOT need to wait for a blood test to confirm Lyme Disease. If you have a bullseye rash, then you should be started straight away on the correct dose and type of antibiotic treatment for Lyme Disease, according to the NICE Guidelines. However, it is important to note that not everyone develops the rash, and some studies indicate more than half of people who have Lyme did not have a rash. It is also worth bearing in mind that the rash can look different on dark or coloured skins, and they often don't get picked up. https://www.nice.org.uk/guidance/ng95?fbclid=IwAR0m7wFYROgszvxXGSWMRVXaRAPdV1ucqM0u6DxHb8X06f5If4iDxAoS64Y
Most Medical Professionals consider Lyme Disease to be an acute infection which is easily resolved by a course of antibiotics. Unfortunately, many of us who experience Lyme Disease do not find this to be the case. Chronic Lyme Disease develops when diagnosis comes too late, and the bacteria has spread systemically, or after a course of antibiotics which is not fully successful in eradicating the bacteria. This is a highly controversial area of medicine, and a minefield for any patients who find themselves in this position. The latest scientific research seems to confirm that Lyme bacteria is very difficult to get rid of, and can withstand antibiotics by becoming dormant. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/
It is important to consider this when symptoms persist after treatment, and work with a medical professional who is knowledgeable about Lyme.
More Information about the NICE Guidelines can be found on the Lyme Disease UK website
Treating for Lyme Disease
Some Possible Options
Conventional Antibiotic Treatment
An organisation called ILLADS trains medical professionals, known as Lyme Literate Medical Doctors (LLMDs) in the latest scientific research and treatment methodologies for Lyme Disease, and they often recommend long-term antibiotic use. This is extremely controversial, and most doctors in the UK are not allowed to do this. There may be side-effects and long-term consequences to using antibiotics long-term.
I personally chose not to go down this route, but many people do, with varying degrees of success.
As with all antibiotic treatment, it is important to remember that pathogens can become resistant to antibiotics over time.
Access to a qualified LLMD is limited in the UK, but information on practitioners is available from Lyme Disease UK.
Herbal Treatment
Lyme bacteria has been found to be highly responsive to treatment with herbs, and many people choose to go down this route and treat herbally. However, treating Lyme is a highly specialised area of herbal medicine, which requires a good understanding of the nature of Lyme Disease and the behaviour of the bacteria. There are a few herbalists in the UK who are trained in this way.
One of the best known is Napiers, in Edinburgh/Glasgow, and they have a clinic for treating long-term Lyme herbally. They do online consultations, so you can access their support from anywhere in the UK, if you want to go down the herbal treatment route. https://napiers.net/blogs/therapies/lyme-clinic
Dr Klinghardt is another doctor who uses herbal treatments for Lyme, and has his own Lyme Disease protocol, which is available on his website. https://klinghardtinstitute.com/category/lyme-disease/
Alternatively, Stephen Bhuner published many helpful books, available on Amazon, about treating Lyme Disease herbally, and many people choose to treat themselves following his protocol.
It is important to remember when treating with herbs that, similarly to antibiotics, Borrelia bacteria can also become resistant to herbs over time.
I do not personally have any connection with these doctors or organisations, and cannot personally vouch for them or the efficacy of their treatments. It is important that you do your own research.
Rife Machine Technology
I personally have seen big improvements to my health from using a Rife machine, or more specifically, a Doug Coil machine, and I have found this has helped me a huge amount.
Rife technology involves using a machine which generates a resonating electro-magnetic frequency, similar to a radio wave or a WiFi signal. Certain frequencies of electromagnetic pulses have been shown to kill Borrelia bacteria, and because the frequencies are temporary, the Borrelia bacteria cannot become resistant to them.
More Information on this type of technology can be found here
https://www.scirp.org/journal/paperinformation.aspx?paperid=106157
I also recommend reading Bryan Rosner's book 'Lyme Disease and Rife Machines - When Antibiotics Fail.'
I was sceptical about Rife technology when I first heard about it. But I have found it to be enormously helpful for me in my recovery, and I use it regularly.
I have my own Rife Machine. I am happy to provide information about my machine, if anyone would like to know more.
Rife technology is experimental, and there is no medical research to support its use in the treatment of Lyme Disease, or any other condition. If you choose to experiment using a Rife machine, make sure you do your own research first.
Image by Jerzy Górecki from Pixabay