My Introduction to Lyme Disease
Ticks BiteAbout 20 years ago when I was in my early 20’s, travelling India, I became sick with a terrible fever. I remember being delirious for many days and stayed in a mosquito netted bed slipping in and out of strange dreams and suffering joint pains. This didn’t seem to stop until the day I looked in the mirror and saw a strange lump behind my ear. Of course I was repulsed as I realised it was an insect, a tick. The tick had obviously been there for a very long time, as it was easily about a cm in length, and so 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, but sadly it wasn’t until 16 years later did I learn what Lyme Disease was, and the fact that it is spread by a tick bite.
Slow DegenerationMy health had deteriorated since that bite, firstly it was fatigue followed by joint pain, then 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 for me, but like so many ‘modern day’ diagnosis such as mine, there was no answers or helpful treatment, no fix it. I accepted these vague diagnosis but knew there must be a missing link, why me? I would often ask myself, why all these health issues? My immune system was always weak and I was very susceptible to respiratory and throat infections, and later on in life had some quite serious but unexplained bacterial infections, such as painful abscesses in my tonsils, and infections in my gallbladder. I tried to carry on as normal, but eventually lost my ability to work on a regular basis, 16 years after the bite I had developed a disorder of my autonomic nervous system called Postural Orthostatic Tachycardia Syndrome or PoTS. Which had a negative effect on many aspects of my working life; 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 often very dizzy and weak. Night sweats and panic attacks haunted me, tiredness dominated my everyday life. Still I kept denying that there was anything wrong, because I looked ‘normal’, and the doctors didn’t seem to show any concern or offer any support other than years of prescribing NSAIDs, which later on in life I learned 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”, as it at the time was considered that vegetables can produce too much gas and therefore cause IBS. Eating less vegetables I didn’t consider to have been the best advice I had been given over the years, but neither was it the worst. My pain began in my arms, wrists and neck, but later on in life I suddenly began 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 chiro-practitioner informed me that I had some worrying twists and deformities in my spine, scoliosis, kyphosis and spondylolithesis. I was never granted any support for this from the NHS, but told there was 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. It was later on in life I was diagnosed with PoTS, which is associated with EDS. Eventually I struggled with writing and simple number-crunching, my letters would often come out the wrong way round and numbers seem 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 loose confidence in the work environment. My health still remained somewhat of a mystery for me, and when one day I simply could not take any more unexplained and unsupported degeneration, I decided to google my symptoms. Now often this can be a dangerous thing to do! and most GP’s would warn against consulting ‘Dr Google’, but I don’t think anything in life is black or white, and a level-headed researching mind can be a lifesaver. I joined an online health forum, and whilst originally quite overwhelmed, I began to learn that the tick bite I had gotten many years before could well me the cause of my decline in health. It took a long time to persuade my GP that I may have Lyme D, of course he was not happy with my homemade research, and clearly annoyed with my conclusion, but I persisted, and eventually had a test for Lyme D. I had been warned by other Lyme sufferers that it would most likely be negative in the UK, and that they had to go either to Germany or USA to be adequately tested, at a very high price. I simply could not afford this, as by now I had been without work for a long time, and was struggling to afford just the vitamins that I had been advised to buy.
The Miss-diagnosis ShamblesThere was very little in the media about Lyme D at this time and friends and family clearly thought I was being dramatic about my self diagnosis, but eventually after some recent media coverage, some friends were kind enough to club together and help me get to the Borrelia Clinic Augsberg or BCA, in Germany, to be tested. The testing system used in the UK is seriously outdated and inaccurate – many people are said to have been un-diagnosed because of this, the true figure of people suffering with Lyme D 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 and 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 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 has the ability to mutate its form into as many as 4 different types, thus avoiding antibiotic treatment. Consequently few people are cured within the few weeks period of antibiotics that is recommended buy the USA’s Centre For Disease Control, the CDC. There is also the dilemma regarding the worrying trend towards increasing anti-biotic resistance in health care, and more recently it seems that the NHS is trying to restrict the use of anti-biotics for ‘minor’ infections these days. That is what my doctors excuse was for leaving me without treatment.
Lyme WarsThere are two distinctions when it comes to Lyme Disease, there is Acute and Chronic, but the problem lies within the fact that the main body which the CDC, takes its guidelines from; the Infectious Disease Society of America or the IDSA. Unfortunately for ‘Lymies’, the IDSA will not accept that such a condition as Chronic Lyme exists, that in fact after the standard 2-4 week treatment of oral antibiotics, if a person still believes they are suffering with Lyme Disease it is what they term ‘post Lyme syndrome’. This seemingly minor detail endeavors to save the beast that is the insurance industry of America and the UK NHS, a vast sum of money. In this like so many other politicized situations, Britain and America are in tucked up in bed together. This controversial situation has been termed by some journalists as the ‘Lyme Wars’.
Alternative Treatment OptionsIn his interview with Dr Mercola, Dr D Klinghardt, a renown functional medicine practitioner who uses many different alternative approaches to healing Lyme Disease, he says that:
“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 bodies systems, but one of the most debilitating is how it affects the immune system, often leaving sufferers immune compromised and vulnerable to other infections.
Genetic MutationsOne thing that Dr Dietrich Klinghardt, questions is why does the disease affect some people, and yet others can be non symptomatic? What I have observed on many forums is the increasing numbers of people who have genetic mutations. Mutations such as what is known as the MTHFR gene 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 utilize 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 maximize methylation (protect your methylation) by understanding what affects your methylation process such as toxic exposure, smoking, medications, poor diet, malabsorption and decreased stomach acid”.There are many mutations that appear to be common in ‘Lymies’, and after I tested my DNA I discovered I had many of them, including a gene called HLA, which in simple terms 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 MasqueraderLyme Disease is known as the great masquerader and here are some of the common misdiagnosis and symptoms commonly reported by sufferers including myself; 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 and Methylation disorders and of course a myriad of pathogenic diseases including Fungal, Parasitical, Protozoan and Bacterial. What we are learning is that Antibiotic treatment, be it for Lyme D or any illness, is basically not enough. It can be a useful tool when treating seriously ill patients, but Lyme D and its many co-infections must be tackled through many different aspects. The most fundamental of which is through detox. One must remove before one can continue to add. I will further the information on this post, going into more detail about how to detox the body, how to strengthen the immune system, and how to protect from further degeneration and how to learn about your specific bodies strengths and weaknesses. Follow me on the path to health and realising your full potential!
Trackback from your site.