Lyme and Co. – UK versus USAI’ve probably seen around 20 different doctors and physicians in the last four years, in a quest to understand what’s happening in my body. None of them has given me ‘the’ answers, rather small clues. This was frustrating at the start, as most of us rely on professionals to sort out our health for us.
When I started travelling out of the UK to see specialists, I was struck by how unempowered we are in our country regarding our health. We expect our doctors to tell us what’s wrong and also expect, most of the time, to take something that will fix us. We don’t expect even to view our test results. In America, people appear to find this absurd. In my experience, people tend to organise their own health and ensure they are provided with copies of all the reports their doctors receive. It would not be unusual for Americans to question a diagnosis and request exactly what they want done re diagnosing and treatment. In the US, with the exception of a recent advancement in free medical treatment thanks to Obamacare, medical treatment is covered by insurance. This ensures it is a profit-making industry where money talks and, therefore, the patient has some control.
The NHS, on the other hand, is a publicly-funded healthcare system. The investigative journalist, Jim Edwards, bluntly stated:
“The National Health Service is, as all Americans know and fear, a completely public ‘socialised medicine’ system. It’s dramatically different from the US’s patchwork system of private providers and insurance companies.”In his article, he cannot praise the NHS enough and quite rightly so. However, that may depend on what’s wrong with you. In the case of those with chronic illnesses, such as Lyme Disease and its many associated co-infections (Lyme Disease never travels alone), the NHS appears to be lagging far behind.
The majority of people diagnosed with Lyme Disease in the UK had to obtain their diagnosis outside the UK, in the private sector. The same goes for the treatment. With regards to the diagnosis, the problem is that the testing system used in the UK is outdated and inaccurate.
A clinic that was set up by the NHS in Hampshire to treat Lyme Disease was closed after six months, leaving no support for those suspected of suffering from or diagonosed with Lyme Disease.
After being tested negative in the UK (I was warned I would be), I was diagnosed positive in Germany at one of Europe’s most renowned Lyme clinics, the BCA. This procedure cost around £3,000 with flights and accommodation. Sadly, on my return to the UK, the NHS still would not offer support with my swiftly-diminishing health. On the contrary, I was met with disdain and treated like a troublemaker for going abroad. This is a common story for those with Lyme in the UK. What is it like in the USA?
Firstly, Lyme Disease is for the rich. It is an expensive disease to diagnose and treat. Even without treatment, it is an expensive disease. You must keep a clean, organic diet. Food and supplements alone can break the bank for some people. It is like running a false immune system.
Lyme is a controversial disease, not least because the insurance industry in America will not cover treatment for it. At least they have MDs who know about it, and are licenced to treat it, but at a high price. Waiting lists can be up to a year in many states, and appointments often cost around $300 to £1,000 per hour. Even if you can manage this cost, there’s no guarantee that what is prescribed will help. I soon learned that Lyme Disease is a complicated problem to tackle. No wonder the NHS refuses to touch it.
When I was seen in America, I wasn’t met with frustration or treated like a trouble maker when I asked questions. I could suggest what I needed, according to my research, and I was listened to with respect. As it turns out, my case was complicated because I’d had Lyme for such a long time. I was suffering with biotoxin illness, which had made worse with antibiotics. I worked out myself that I had biotoxin illness and the horrible complications surrounding it, such as Multiple Antibiotic Resistant Coagulase Negative Staphylococcus, or MARCoNS. This took nearly four horrible years to discover. At around £20,000 and with the average person spending £60,000 upwards to treat Lyme Disease, apparently that was cheap. I did have to to do most of the work myself, as each specialist had only a snippit of information to add to the bottomless black hole of my researching mind. If I hadn’t been in the States, I couldn’t have diagnosed or treated any of the problems and might not be alive right now.
The complications and co-infections of Lyme Disease have proven far more debilitating for me than the disease itself, which is a walk in the park compared to, say, systemic disseminated parasite infections, or tachycardia symptoms. Not every Lyme-literate physician will understand how to help you with these symptoms.
You could have all the money in the world, and as we’ve seen re famous celebrities such as Yolanda Foster, Avril Lavigne and even George W Bush. It doesn’t necessarily give you a fast-track ticket back to health.
There are two distinctions when it comes to Lyme Disease – acute and chronic. The problem occurs because the American Centre for Disease Control (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 states that, after the standard 2-4 week treatment of oral antibiotics, if a person still believes they are suffering from Lyme Disease, it is what they term ‘post Lyme syndrome’. This seemingly minor detail endeavours to save the insurance industry of America and the NHS in the UK a vast sum of money. In this situation, Britain and America are tucked in bed together.
The other organisation that spearheads Lyme research and treatment guidelines is the International Lyme and Associated Diseases Society (ILADS), which opposes the guidelines from the IDSA. The contention between these two groups continues to grow. While the arguments in what has been coined the ‘Lyme War’ continue, many many lives are lost. The sad fact is that Lyme Disease kills. Mostly it kills slowly and quietly, as many people are not diagnosed and are given the familiar diagnoses of illnesses such as fibromyalgia, ME, depression, chronic fatigue and MS. Also, in its late stages, more serious diseases such as heart attack and autonomic dysfunction are commonplace. Meanwhile, people’s lives can be made miserable. Sufferers live a half life, losing their ability to work, their zest for life and also being treated as hypochondriacs. Some may lose their will to live.
If, like me, you were initially infected was as long as 20 years ago, the picture will be complicated. Soon into my rocky road to recovery, I realised that standard Lyme therapy – even if it was long-term – wouldn’t work for me. After the first few courses of basic tetracylines, antibiotics just couldn’t be tolerated and I seemed to be getting worse. I had to go back to the drawing board. This was hard to do. When you’re very sick and your health is deteriorating rapidly, you need someone to help you. Alas, even the specialists in the USA weren’t aware of some of the issues I was facing. I didn’t meet one specialist who could teach me more than I had already learned online, but my information wasn’t enough. Only so much progress could be made at a time. I discovered that healing too fast could be as dangerous as not healing at all. This is known as a Herxheimer reaction, or ‘Herxing’, and became an unwelcome part of my life for the last four years.
Establishing a plan of attack took years. All the different layers of disease had to be addressed in order of urgency, and this was confusing and frustrating. One has to take into account: mineral balancing, heavy metals, fungal infections, parasites and gut dysbiosis, as well as killing off bacteria. I learned that the bacteria are not always top of the list. The hardest thing of all is tackling biofilm. This is because biofilm is more than the sum of its parts…
Further reading: Lyme Disease http://www.ilads.org/lyme/about-lyme.php
Lyme clinic UK: http://www.dailyecho.co.uk/news/11179170.Lyme_disease_clinic_to_close_after_just_six_months/?ref=rss
Lyme clinic Germany: http://www.bca-clinic.de/
Biotoxin illness: http://www.publichealthalert.org/when-antibiotics-dont-work-an-interview-with-dr-ritchie-shoemaker.html
Parasites and Lyme Disease: http://www.publichealthalert.org/parasites-and-worms-the-new-lyme-disease-co-infection.html Tachycardia and Lyme Disease: http://autonomicspecialists.com/chronic-lyme-disease/
UK Bioweapons HQ: https://en.wikipedia.org/wiki/Porton_Down
Fossilized Lyme D: http://www.livescience.com/46007-lyme-disease-ancient-amber-tick.html
IDSA Guidelines https://www.change.org/p/centers-for-disease-control-and-prevention-end-preferential-treatment-of-the-idsa-guidelines-for-lyme-disease-2
ILADS Guidelines http://www.ilads.org/lyme/treatment-guideline.php
Lyme War http://www.medscape.com/viewarticle/586226
Herxiemer Reaction (healing crisis) http://www.tiredoflyme.com/the-herxheimer-reaction.html
Biofilm and Lyme http://www.herbsforlyme.com/category-s/225.htm
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