Lyme and Co-UK v USA.I have probably seen around 20 different doctors and physicians in the last 4 years, trying to understand what is happening in my body. Each person I have seen has not given me ‘THE’ answers, rather small clues. This was frustrating in the beginning, as most of us rely on these professionals to sort our health out for us.
When I began to travel out of the UK to see specialists, I was struck by how unempowered we are in the UK with regards to our health. We expect our doctors to tell us whats wrong, and expect, most of the time, to be able to take something to fix us, and we DON’T expect to even look at our test results. In America they seem to find this absurd, even the most oblivious tended to organise their own health; ensuring they receive their own copies of all the reports their doctors receive. It is not unusual to question a diagnosis and request exactly what they feel needs to be done with regards to diagnosing and treating. This is of course due to the fact that in the US, with the exception of more recent advancement in free medical treatment in the form of Obamacare, medical treatment is covered by insurance ensuring it’s 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 puts it quite bluntly when he says;
“The National Health Service is, as all Americans know and fear, a completely public “socialized 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, but that may depend on what is wrong with you. In the case of those with Chronic Illness’s, such as Lyme Disease and its many associated Co-infections (Lyme Disease never travels alone, often its co-infections are more debilitating and destructive than Lyme itself), the NHS appears to be lagging far behind.
The large majority of people diagnosed with Lyme Disease in the UK had to get their diagnosis outside of the UK in the private sector, the same goes with the treatment. With regards to the diagnosis, the problem is that the testing system they use in the UK is very out of date, therefore very inaccurate.
A clinic that was set up by the NHS in Hampshire to treat Lyme Disease was closed down after only 6 months, leaving no support for those suspected of suffering with Lyme nor those diagnosed.
After being negative in the UK (I was warned I would be), I was diagnosed positive in Germany at one of Europe’s most renown Lyme clinics the BCA , it cost around £3,000 with flights and accommodation, but sadly on my return 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, but what is it like in the USA?
Firstly, Lyme Disease is for the rich, it is an expensive disease to diagnose and to treat, even without treatment it is an expensive disease as you must keep a clean organic diet, food and supplements alone can break the bank, for some. It is like running a false immune system.
It is a very controversial disease not least because the insurance industry in America will not cover treatment for it, though at least they do have MD’s who know about it, and are licenced to treat it, but at a very high price. Waiting lists can be up to a year in many states, and appointments often around $300 to £1,000 per hour. Even if you can manage this, there is no guarantee that what is prescribed for you is going to help you, as I learned, Lyme Disease is a complicated problem to tackle. No wonder the NHS refuses to touch it.
What was useful about being seen in America, was that 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 had had Lyme for such a long time, I was suffering with Biotoxin Illness which was made worse with Anti-Biotics. The thing is, it was me who worked out I had Biotoxin Illness and the horrible complications surrounding it such as Multiple Anti-biotic Resistant Coagulase Negative Staphylococcus, or MARCoNS. This took nearly four horrible years to discover, and at around £20,000 and with the average person spending £60,000 upwards to treat Lyme D, apparently that was cheap. Though I had to do most of the work myself, each specialist had only a snippit of information to add to the bottomless black hole of my researching mind, the truth is, that If I had not been in the States, I would not have been able to diagnose nor treat any of these problems and I don’t think I would be alive right now.
You see the complications and co-infections of Lyme Disease have proven to be far more debilitating for me than the Lyme Disease itself, which is a walk in the park compared to say systemic disseminated parasite infections, or Tachycardia symptoms and not every Lyme Literate Physician will be able to understand how to help you with these symptoms.
You could have all the money in the world, and as we have seen with the latest media coverage around 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, there is Acute and Chronic, but the problem lies within the fact that the main body which the American Centre for Disease Control, 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.
The other organization that spearheads Lyme research and treatment guidelines is the International Lyme and Associated Diseases Society, or ILADS, which opposes the guidelines set up by the IDSA and the contention between these two groups continues to grow. But whilst the arguments in what has been coined as the’ Lyme War‘ continue, many many lives are lost. The sad fact is that Lyme Disease kills. Mostly it kills slowly and quietly, many people are not diagnosed and instead are given the all too familiar diagnosis of illness’s such as Fibromyalgia, M.E, Depression, Chronic Fatigue even MS. Also in its late stages more serious diseases such as heart attack and autonomic dysfunction are common place. In the meanwhile peoples lives can be made miserable, people live a half life, loosing their ability to work, their zest for life and on top of this being treated as hypochondriacs, they all too often loose their will to live.
If, like me, your initial infection was as long as 20 years ago, the picture is going to be very complicated. I realised soon into my rocky road to recovery, that standard Lyme therapy, even if it was long term was not going to work for me. After the first few courses of basic Tetracylines, Anti-biotics just could not be tolerated and after several attempts, with the outcome that things had gotten worse, I had to go back to the drawing board. This was hard to do, when your very sick and your health is deteriorating fast, you really need someone to help you but alas, even the specialists in the US of A were not aware of some of the issues that I was faced with. I did not meet one specialist that was able to teach me more than I had already learned online, but still my information wasn’t enough. There was only so much progress that could be made at a set time, and I often 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 in itself, all the different layers of diseases had to be addressed in an order of urgency, and knowing which was what was confusing and frustrating. One has to take into account, mineral balancing, heavy metals, fungal infections, parasites and gut dysbiosis as well as good old fashioned killing off of bacteria, I learned that the bacteria are not always top of the list. But the hardest thing of all, is tackling Biofilm. This is because, I found that 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 D: http://www.publichealthalert.org/parasites-and-worms-the-new-lyme-disease-co-infection.html Tachycardia and Lyme D: 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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