My Introduction to Lyme Disease
About 20 years ago, when I was in my early 20s and travelling through India, I became sick with a terrible fever.
I remember being delirious for many days as I slept in a mosquito-netted bed slipping in and out of strange dreams and suffering joint pains. This didn’t stop until the day I looked in the mirror and saw a strange lump behind my ear. I was repulsed as I realised it was an insect – a tick. It had obviously been there a long time, as it was about a centimetre in length and had been passing the bacteria it carries – Borrelia Bugdofori – into my system for a long time. I began to improve immediately after removal of the tick. However, 16 years later I learned about Lyme Disease, and how it is spread by a tick bite.
My health had deteriorated since that bite. Firstly, it was fatigue, followed by joint pain. A few years down the line, I was diagnosed with IBS, then fibromyalgia, then EDS, a connective tissue disorder. Sadly, I relied on the NHS to solve my health issues. As is the case with many ‘modern day’ diagnoses such as mine, there were no answers, no helpful treatment, no fix it. I accepted these vague diagnoses but knew there must be a missing link. Why me? I would ask myself, why all these health issues? My immune system was always weak and I was susceptible to respiratory and throat infections. Later in life, I had some quite serious but unexplained bacterial infections, such as painful abscesses in my tonsils which I was hospitalised for, and infections in my gallbladder.
I tried to carry on as normal. Eventually, I was unable to work regularly. Some 16 years after the bite, I had developed a disorder of my autonomic nervous system called Postural Orthostatic Tachycardia Syndrome or POTS. This negatively impacted many aspects of my working life. For starters, I could not control my heart rate, and any minor anxiety would cause havoc with my body. Standing for long periods became intolerable, and I frequently felt dizzy and weak. Night sweats and panic attacks haunted me and tiredness dominated my everyday life. Still I kept denying that there was anything wrong, because I looked ‘normal’, and the doctors didn’t show much concern or offer support, other than years of prescribing NSAIDs.
Down the line, I realised these had helped damage my intestinal lining, causing stomach ulcers. The IBS was debilitating and a referral to a NHS nutritionist culminated in being advised to “eat less vegetables”- at the time, it was considered that vegetables can produce too much gas and, therefore, cause IBS. Eating less vegetables wasn’t the best advice I’ve been given over the years, but it wasn’t the worst either.
My pain began in my arms, wrists and neck. Later, I started to get strange ‘electric shock’-type pains in my hips. Sometimes, this would be so sudden and intense that I would fall down or loose my balance. A trip to a chiropractitioner informed me that I had some worrying twists and deformities in my spine – scoliosis, kyphosis and spondylolithesis.
The NHS pretty much told me that nothing could be done. I was referred to a rheumatologist by the chiropractic clinic, and also to a specialist in Hypermobility Syndrome in a London hospital. The rheumatologist diagnosed me with fibromyalgia, and the Hypermobility specialist with Elhers Danlos Syndrome, or EDS. I was later diagnosed with POTS, which is associated with EDS.
Eventually, I struggled with writing and simple number-crunching. My letters would come out the wrong way round and numbers seemed to fly all over the place when I tried to do simple arithmetic. I carried on working but was ridden with anxiety, and quickly began to lose confidence in the work environment.
My health remained something of a mystery for me. One day, I simply couldn’t take any more unexplained and unsupported degeneration, so I decided to Google my symptoms.
Now, this can be a dangerous thing to do! Many GPs warn against consulting ‘Dr Google’, but very few things in life are in ‘black or white’ and level-headed researching can be a lifesaver. I joined an online health forum. Desoite originally feeling overwhelmed, I soon learned that the tick bite I had received many years ago could be causing my decline in health.
It took a long time to persuade my GP that I may have Lyme Disease. He was unhappy with my homemade research, and was clearly annoyed with my conclusion. I persisted, and eventually had a test for Lyme Disease. I had been warned by other Lyme sufferers that it would most likely be negative in the UK, and to visit either Germany or the USA to be adequately tested, at a high price. I simply could not afford the price, as I had been out of work for some time. I was even struggling to afford the vitamins that I had been advised to buy.
The Miss-diagnosis Shambles
There was little in the media about Lyme Disease at this time, and friends and family clearly thought I was being dramatic about my self-diagnosis. Eventually, friends were kind enough to club together and help me have a test in the Borrelia Clinic Augsberg, or BCA, in Germany.
The testing system used in the UK is seriously outdated and inaccurate – many people are said to remain undiagnosed because of this system. The true figure of people suffering with Lyme Disease and its many co-infections in the UK is impossible to estimate.
Sadly, on my return from Germany with a positive diagnosis, the NHS still would not offer any support with my swiftly-diminishing health. On the contrary, I was met with disdain and treated like a troublemaker for going abroad. This is not an uncommon story for those with Lyme Disease in the UK.
The sad truth it that the NHS probably cannot afford the treatment of Lyme Disease. It is a very difficult illness to treat, not least because the Lyme or Borrelia spirochete can mutate its form into four different types, thus avoiding antibiotic treatment. Consequently, few people are cured within the few weeks’ period of antibiotic treatment that is recommended buy the USA’s Centre For Disease Control (CDC). There’s also the dilemma regarding the worrying trend towards increasing antibiotic resistance in health care. The NHS appears to be trying to restrict the use of antibiotics for ‘minor’ infections these days. My doctor used that as an excuse for leaving me without treatment.
Two distinctions exist when it comes to Lyme Disease – i.e. acute and chronic. A problem exists because the Centre for Disease Control in America (CDC) takes its guidelines from the Infectious Disease Society of America (IDSA). Unfortunately for ‘Lymies’, the IDSA will not accept that such a condition as chronic Lyme exists. It maintains that, after the standard 2-4 week treatment of oral antibiotics, if a person still believes they are suffering with Lyme Disease, it is termed ‘post-Lyme syndrome’. This seemingly minor detail endeavours to save the beast that is the insurance industry of America, and the NHS in the UK, a vast sum of money. As with so many other politicised situations, Britain and America are in tucked in bed together. This controversial situation has been termed by some journalists as the ‘Lyme Wars’.
Alternative Treatment Options
In his interview with Dr Mercola, Dr D Klinghardt, a renowned functional medicine practitioner who uses many different alternative approaches to healing Lyme Disease, says:
“Conventional Lyme treatment hinges on long-term use of antibiotics. While this treatment can indeed be effective, there are many reasons to opt for alternatives such as those detailed by Dr. Klinghardt, as antibiotics will disrupt your gut flora, thereby exposing you to a whole host of other pathologies.”
Lyme disease affects all the bodily systems and is especially debilitating in how it affects the immune system. Frequently, sufferers are left immune-compromised and vulnerable to other infections.
One thing that Dr Dietrich Klinghardt questions is: why does the disease affect some people and yet others can be non-symptomatic?
On many forums, I have observed increasing numbers of people who have genetic mutations. Known as the MTHFR gene, these mutations are very common. On Dr Frank Lipman’s website, guest writer Amie Valpone explains the relevence of this gene: blog
“Methylenetetrahydrofolate reductase (MTHFR) is both an enzyme and a gene; it is crucial to the body because it processes folate (folic acid) for our bodies to utilise it. Mutations in this gene result in decreased activity of the enzyme, which causes issues with the methylation in our body, leading to important body functions to become disrupted – which include the ability to eliminate toxins properly. Methylation is an important biochemical process that is essential for the proper function of nearly all of your body’s systems; it occurs billions of times each second and helps repair your DNA, controls homocysteine, recycles molecules your body needs for detoxification, helps keep inflammation in check and maintains your mood. To avoid serious conditions that are caused by the breakdown in methylation, the key is to maximise methylation (protect your methylation) by understanding what affects your methylation process such as toxic exposure, smoking, medications, poor diet, malabsorption and decreased stomach acid.”
Many mutations appear common in ‘Lymies’. After I tested my DNA, I discovered that I had many of them, including a gene called HLA. In simple terms, this can result in a weakness of the immune system:
“The HLA gene family provides instructions for making a group of related proteins known as the human leukocyte antigen (HLA) complex. The HLA complex helps the immune system distinguish the body’s own proteins from proteins made by foreign invaders such as viruses and bacteria.”
(information copied from my gene variance report from Livewello).
The Great Masquerader
Lyme Disease is known as the great masquerader. Some common misdiagnoses and symptoms commonly reported by sufferers are:
IBS and gut dysbiosis; fibromyalgia; EDS or connective tissue disorders; autism; chronic fatigue; depression; anxiety disorders; respiratory infections – particularly upper respiratory; throat infections; food allergies; auto-immune disorders; tachycardia; autonomic nervous system disorders such as POTS; restless leg syndrome; methylation disorders; a myriad of pathogenic diseases including fungal, parasitical, protozoan and bacterial.
We are learning that antibiotic treatment, be it for Lyme Disease or any illness, is basically not enough. It can be a useful tool when treating seriously ill patients, but Lyme Disease and its many co-infections must be tackled using different elements. The most fundamental of these is detox. One must remove before one can continue to add.
Soon, I will be going into more detail about how to detox the body, strengthen the immune system, and protect it from further degeneration. Also, how to learn about your specific body’s strengths and weaknesses.
To learn more about how to stay safe from Lyme Disease, and its prevention, identification, and treatment please read here:
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