What is Lyme disease?
Lyme disease is a bacterial infection spread to humans primarily from ticks, though in recent years we have come to understand that Lyme can also be transmitted via mosquitos, blackfly and also spider bites. There is research suggesting that a mother can pass it to her child during pregnancy and the possibility it can be passed from person to person through sexual intercourse, though at the moment the evidence for this is still anecdotal. People also believe that Lyme can be dormant in someone’s body for years, even decades but can be activated by a traumatic event or a period of extreme stress, making it all the more confusing to diagnose. The bacteria species of Lyme disease is scientifically referred to as Borrelia. There are different strains of Borrelia but the most common is Borrelia burgdorferi. Borrelia are spirochete bacteria. Under a microscope it looks like a tiny corkscrew shaped worm and it is this shape allows them to burrow into tissues and organs with ease.
Why Lyme disease is on the rise.
Lyme disease is the fastest growing vector borne disease in the whole world. It first came to attention in Lyme, Conneticut in 1975 and since then the disease has been mutating and spreading rapidly. Till recently the UK has been largely unaffected (unlike the rest of Europe) because our island has kept us relatively safe from the spread of ticks and Lyme disease. However, Lyme disease carrying ticks have now been recorded in every county in the UK. The wet British climate is also the perfect breeding ground for ticks and our rich and varied wild life and green open spaces have also had a huge influence on the spread of ticks and disease. Climate change is also impacting the spread of Lyme disease, with ticks flourishing in warmer weather and an increase in the number of deer also playing its part. For more information on Lyme disease in your area you can refer to the tick threat map created by the big tick project
Why many people could have undiagnosed or misdiagnosed Lyme disease.
Despite seeing the tick, removing it and becoming almost immediately ill, it took me six weeks to understand that the tick was responsible for my ill health. I grew up in the countryside and was bitten by insects as a child but I had never seen a tick before. I didn’t know anything about ticks up to that point because they weren’t common in the UK. I didn’t know that insects could carry diseases and that something as small as the head of a pin could make me so incredibly unwell. I have had five NHS Blood tests for Lyme disease and they all came back negative, although I soon found out that the test has a low accuracy rate. My doctors were also incredibly dismissive, telling me that you couldn’t catch Lyme disease in Oxfordshire and that as my tests were negative I didn’t have Lyme disease. It didn’t take me long to realize the doctors were going to lead me in the direction of an autoimmune diagnosis like ME or MS and if I had any hope of beating the disease then I had to find my own path and go it alone. If I hadn’t seen the tick (most people don’t because ticks can be the size of a poppy seed), then I don’t think I would have been so convinced that I had contracted Lyme disease, in spite of what the doctors were telling me.
It was also very clear to me that the GPs I saw weren’t up to date with the current thinking coming from America about Lyme disease and the NHS infectious disease specialists were very dismissive of the evidence for persistent Lyme disease. This experience with the NHS is all to common for Lyme sufferers.
As a result of not seeing a tick bite, inaccurate blood tests for Lyme, ill-informed GPs and dismissive infectious disease specialists, many people could be living with the wrong diagnosis, particularly as Lyme disease mimics many other conditions. Despite testing negative five times for Lyme disease with the Elisa test, I have tested positive twice at two different laboratories in Denmark and Germany using the much more accurate Eli spot blood test.
Why the UK Blood Test for Lyme isn’t accurate.
The bacteria responsible for Lyme disease have changed somewhat since 1975. They have developed various tricks that allow them to hide from our immune system and it is our immune system response that the blood tests check when confirming a case of Lyme disease. When the tick punctures the skin, immune modulators in the tick’s saliva coat the bacteria which hides it from the immune system meaning that it can take several weeks before our immune system realizes a foreign invader has entered our body. Any test done before that period would be null and void.
The bacteria can also disguise itself by changing its outer cell wall proteins, which essentially enables it to hide in plain sight from our immune system. When the body finally detects these foreign invaders, it sends out white blood cells to fight the bacteria but the spirochete disguises itself by changing its outer cell wall. The white blood cells, in a state of confusion, start attacking our healthy tissue, which causes inflammation and makes the sufferer feel extremely unwell. Borrelia are the masters of disguise.
Another reason someone can get a false negative on the Elisa test is that they may be immunosuppressed, so their immune system isn’t able to mount an appropriate response. This could be due to long term illness or medications (like steroids) which can suppress the system. Lastly, there are new strains of Lyme disease emerging which require a different immune response to the one the Elisa test looks for. This means our current test can’t identify all strains.
Why antibiotics don’t always work to kill the disease.
If you’ve kept up with me this far you’ll have learnt that Borrelia are the geniuses of the bacteria world. Not only can they hide from the immune system but they can also hide from antibiotics. By forming what has been termed as cyst or a bio-film which is a slimy glue like substance made up of other micro-organisms that stick together, they form a kind of coat of armour. Underneath the bio-film the organism is protected from antibiotic attacks and can remain dormant for long periods of time, then when the antibiotics have left the patients system they will re-emerge and launch another attack.
That is why the standard prescription in the UK of a months’ worth of doxycycline can often fail, as doxycycline is only effective against an active infection of Lyme. There are antibiotics that can kill the cyst and bio-film forms of the disease, though they currently aren’t being prescribed in the UK for Lyme disease. Borrelia are also the only known organism that can exist without iron. One of the immune systems tricks when dealing with pathogens is to starve it of iron but Lyme disease uses manganese instead of iron to feed on.
Why my GP might not be able to help me.
Currently, many NHS doctors are not aware of the very real national threat that Lyme disease is posing (mostly because the evolution and spread of this disease has happened very recently in the UK). GPs don’t seem to know much about the other infections that patients can contract along with Lyme disease, some of which have very distinctive symptoms. Until the guidelines for Lyme disease were changed recently, doctors were not aware that a clinical diagnosis of Lyme disease should be made based on symptoms and that they couldn’t fully rely on the blood test as a diagnostic. Some GPs also do not realize that Lyme disease has now been detected in every county in the UK. However, you may be lucky and have a very sympathetic and knowledgeable GP, certainly more and more are educating themselves about Lyme disease.
Children and Lyme disease
My Lyme disease support group represents every demographic in the UK. This means that anyone and everyone is susceptible to Lyme disease. Unfortunately, we see a lot of parents on the group as young children are one of the demographics most at risk for catching Lyme. For parents of children with Lyme disease, I recommend finding a Lyme literate doctor as soon as possible, although this might mean leaving the UK for treatment. Please refer to our recommended list of specialists here.
You will also benefit from joining the LDUK facebook support group where you will find other parents who can offer support and guidance.
Lyme disease is incredibly tricky to treat but it becomes much more complex if the patient has also been infected with co-infections. Co-infections are bacterial, parasitic and viral infections that may also be carried by your original source of infection. I myself have tested positive for the co-infections Mycoplasma, Ehrlichia, Chlamydia Pneumonia, Anaplasma and I've been clinically diagnosed with Bartonella and the worst of all the co-infections, the parasitic infection Babesia. All these infections I contracted from a tick bite in Oxfordshire. Some of these co-infections are a lot more aggressive in nature than Lyme disease and much harder to treat. There are also new strains of these infections evolving all the time and even the best laboratories in Germany and America don't have tests for all the strains. That is why some of the infections need to be diagnosed according to symptoms by experienced Lyme doctors. Bartonella and Babesia infections have very distinctive symptoms that can help with the diagnosis of tick borne diseases and in fact some experts suggest that Bartonella might be more prevalent than Lyme disease. Bartonella may cause pain on the soles of the feet, pain in the shin bone and a rash that looks like stretch marks. Babesia's most distinctive symptoms are air hunger, insomnia and night sweats.
How could I benefit from this website if I have been diagnosed with an Autoimmune condition?
I have outlined above how easy it is to misdiagnose Lyme disease. There are experienced Lyme doctors outside of the U.K. who believe that at the root of nearly every autoimmune patients diagnosis is an infection. Experts have claimed that they have had multiple patients with diagnosis’s like ME, MS, and Fibromyalgia that have tested positive for Lyme disease and/or coinfections using more accurate testing than we have access to in the U.K. An example of how rife these infections are and how they often get misdiagnosed comes from American pathologist Dr Alan MacDonald.
Dr MacDonald tested ten Alzheimer brains from the Harvard brain bank and found that seven out of the ten were positive for Lyme disease. We know that Alzheimer’s is a build up of protein and destruction of neurons in the brain but what triggers this?
For seven out of the ten patients, the most likely trigger was the bacteria responsible for Lyme disease, Borrelia Burgdorferi, but what was the trigger for the other three? In this website we also address other possible triggers of autoimmune conditions such as heavy metal build up, chemicals, plastics and genetic mutations.
Because chronic Lyme disease and co-infections are multi systemic and can affect every single organ and process within the body, we have to approach the treatment of Lyme disease by addressing multiple systems in the body. By doing this we not only help sufferers of Lyme disease but also sufferers of many other conditions.
Autoimmune conditions that Lyme disease and or co-infections can trigger and mimic are listed below.
- Chronic Fatigue Syndrome
- Crohn’s disease
- Alzheimers disease
- Fifth’s disease
- Gastroesophageal Reflux disease
- Infectious Arthritis
- Interstitial Cystis
- Irritable Bowel Syndrome
- Juvenile Arthritis
- Ménières Syndrome
- Multiple Sclerosis
- Psoriatic Arthritis
- Psychiatric disorders (bipolar, depression, etc.)
- Raynaud’s Syndrome
- Reactive Arthritis
- Rheumatoid Arthritis
- Sjogren’s Syndrome
- Sleep disorders
- Thyroid disease
Why would I benefit from this website if I consider myself to be healthy?
In my journey with Lyme, I have often questioned why some people who contract Lyme disease have made a near total recovery after a few courses of antibiotics and others who have had the same treatment have gone on to develop chronic Lyme that has devastated and destroyed their lives. What I often find is that the people who recovered lived a clean and healthy lifestyle with minimal toxic exposure before being bitten. Meaning that their detox pathways would have been clearer, their toxic burden lighter, their bodies richer in nutrients and their immune system stronger and more equipped to deal with infections.
Our environment is contaminated with man made chemicals, plastics, pesticides and heavy metals that are being stored in our bodies, compromising our natural immunity and triggering diseases. Babies are being born into the world with over 200 different toxins, toxins that we weren’t exposed to over 50 years ago. Illness and disease is on the rise and reaching endemic proportions. Infections and viruses are mutating and becoming harder to cure. Our best defense to this changing and biologically hostile new environment is prevention.
Anyone who is interested in maintaining a healthy lifestyle and looking to preserve their health will benefit from many of the recommendations within the website. Information on detox methods, mineral and vitamin supplementation, dietary advice, product usage awareness, immune boosting methods and alternative therapies will be useful to anyone who is interested in total and optimum wellness.