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.
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
Ticks are members of the arachnid family, like spiders – they have 8 legs
Ticks carrying Lyme Disease are now endemic across all areas of the UK
Deterrents – sprays and essential oils
Cover skin – tuck trousers into socks
Avoid long grass and overgrown areas
It's very important to check yourself and your loved ones very thoroughly for ticks after being outdoors. Include hairline, groin and skin folds.
It is essential to remove ticks correctly, to avoid increasing the risk of infection from Lyme bacteria. Do not stress the tick or squeeze it. You can save the tick and get it tested for Lyme Disease.
Buy a simple tick removal tool, which are very cheap, and make sure you have it with you at all times.
You can find videos on YouTube showing how to safely and correctly remove a tick using a tick removal tool.
Speak to your GP in the first instance
A leading Lyme Disease Doctor, Dr Richard Horowitz, has created a free online Lyme Disease Symptoms survey, which you can find at https://doyouhavelyme.com/online-test-form/
The Lyme Disease UK charity also have many good resources on their website.
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
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.
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
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.
I am not medically qualified, and I cannot give anyone medical advice. Lyme Disease is very different for everyone, as it depends on how it is interacting with your body, where your infection is, whether you have co-infections, and particularly how your immune system responds, and whether you have other viral or bacterial or fungal infections. In particular, previous or current mould exposure is something to think about when dealing with Lyme, as that can have a huge impact on your response to Lyme bacteria, and many people find that they need to resolve their mould issues first, before being able to recover from Lyme.
In addition to using a Rife machine, the following areas, below, are key ways that I have supported myself through Lyme Disease.
Chronic Lyme Disease is fundamentally an inflammatory condition, because it provokes the immune system to release pro-inflammatory cytokines, and that is what causes the lyme disease symptoms. The amount of ‘load’ on your immune system is a key factor in determining how severely Lyme will affect you, and why it can look different in different people. Calming the immune system and doing everything possible to reduce inflammation is key.
According to some leading Mast Cell Activation Syndrome Doctors, Lyme Disease can be a key factor in provoking MCAS in their patients. Consider whether MCAS might be a factor for you, and seek advice on how you can calm your Mast Cells.
Good nutrition is key to living well with any chronic illness, and especially with Lyme Disease. An anti-inflammatory diet, low histamine diet, and low carb diet can be beneficial. Many people choose to follow a low-carb, or even a Keto, diet, because carbs, and in particular, sugar, feeds Lyme bacteria. Cutting out sugar is also a very anti-inflammatory way of eating, and so helps reduce inflammation. I would advise you to get some good advice from a Functional Nutritionist who has a good understanding of working with Lyme and also with histamine and autoimmune issues.
Symptoms and immune system inflammation is driven by the toxins that the Lyme Bacteria releases. Working hard to eliminate these toxins has a big impact on how well you feel. What worked for me has been daily infra-red sauna, lymphatic drainage massage (Perrin technique), Epsom Salt foot baths, binders and supplements. All of these need to be introduced slowly and carefully, and in the correct order. Again, work with a registered Functional, Naturopathic or Perrin practitioner to support you with this. It is very important to start any of these very slowly and build up gradually, as Lyme sufferers can be very sensitive to detox.
When we have Lyme, our bodies struggle to cope with normal, everyday toxins that we are all exposed to - chemicals from plastics, toiletries, cleaning products, artificial perfumes, food packaging, air pollution etc, all add to the toxic burden our bodies face. We can develop chemical sensitivities and this can make our symptoms worse. Work at removing artificial and toxic products, focus on natural, chemical-free cleaning products and personal care products, and cook using glass or ceramic. Invest in a good quality water purifier and air purifier. Make sure you don't have mould in your home or work environment.
Living with the symptoms of Lyme Disease can have huge impacts on our mental and emotional health. It is imperative to support yourself with self-care techniques. In addition, Lyme and MCAS can both have huge physical impacts on the nervous system. It is important to integrate practices that can support your autonomic nervous system, including meditation, Mindfulness, gentle restorative yoga, and vagus nerve stimulation. I have found all of these to be very beneficial for me personally.
These are a list of resources that I, personally, have found helpful in my own Lyme journey. I am not linked with or affiliated to any of these organisations, and I cannot take responsibility for external content.
Particularly useful interviews and videos about the link between Lyme and MCAS
Why Can't I Get Better - Richard Horowitz
Rising Above Lyme Disease - Julia Greenspan
When Antibiotics Fail : Lyme Disease And Rife Machines - Bryan Rosner
Lyme Disease is a serious medical condition, and you should always seek professional medical advice if you suspect that you or a loved-one may have been infected. All of the information presented on this website is based on my own personal lived experience of Lyme Disease. I am not medically qualified and I do not claim to be able to cure or treat any medical condition. Chronic Lyme Disease is a medically controversial area, and the information on this website should not be considered to be medical advice. The information contained in this website is for educational purposes only and I can't accept any liability for its accuracy. You should seek out qualified medical professionals to support you with any health diagnoses and conduct your own research.