Lyme – Worldwide Protest Days – 10, 11 May 2013

On these two days, around the world, Lyme Disease sufferers, their friends and families, from 29 countries will protest about the poor response of their political and medical systems to Lyme Disease.  I will be going to London, flying 700 miles, to take part in our event at the Department of Health in Whitehall.  Awful though the disease is, it’s good for us in the UK to hear that we are not alone in having to fight for timely and correct diagnosis, and recognition of the disability the disease can bring.  It has struck me, just this morning, that although many of these countries have quite different medical systems,  and they operate in different political contexts, the controversies are the same.  So I wondered what they do in China, where both medical and political contexts are about as far from ours as can be imagined.

Web browsing for the official Chinese position on Lyme I stumbled on this from a USA Congressman’s (Virgina) site.  It’s just over a year old and refers to the outdated IDSA guidance having been reinstated without revision. and I wrote to the 3 named Congressmen to congratulate them and find out how it has progressed since then.  Anyhow, it seems the Chinese have isolated about 9 different strains of borrelia but the majority are afzelii and garinii, the most common in Europe.  While I was in the writing frame of mind I dropped a line to my old mucker Charles Kennedy (MP), and HRH Prince of Wales for good measure, as well as helping NS (a.k.a. ‘Limeywifey’ – look for her blog) send press releases to news outlets.

The other BIG news of the day was that my dear, wonderful, funny GP agreed to extend my antibiotics for a further 8 weeks!  What a star!!  Given that many people can’t get past 14 days of Doxycycline it’s nothing short of miraculous that he would let me go 32 weeks of the triple drugs.  Of course I had more blood tests to do, to make sure my liver is coping.  I have been wondering about why, if I started treatment within 5 months of a known bite, the Lyme is so entrenched with me and came up with a theory: I’ve had it a lot longer.  I’ve been bitten by ticks pretty much every year, sometimes more than once, since we moved here in 1998.  In 2003 (I checked my records) I went to the doctor with a curious set of neurological symptoms that obviously resolved.  With the benefit of my pseudo-expert hindsight these symptoms look pretty much like Lyme.  It’s a ratbag of a disease: it can lie dormant for week, months, years – maybe kept in check by a strong immune system – only to emerge when you are down for some reason.


Lyme – playing the odds..

Do you do the Lottery?  You have a greater chance of getting Lyme Disease.

The odds against winning a life-changing jackpot in the UK lottery are roughly 45,000,000 to 1.  Forty five million to one, and yet you think it’s worth a gamble.

However, and based on official (underestimated) statistics, your chances of getting Lyme Disease, also life changing, in England or Wales are 60,000 to 1, in Scotland about 17000 to 1.  How do you like those odds?



Should BBC journalist consider ‘Korea change’?

Well, after all the furore about the BBC ‘Panorama’ secret filming of North Korea, what did we see?  Not much, actually: a few odd clips of John Sweeney’s profile on a bus, empty streets and passers-by from fixed camera positions, an empty hospital clinic and a farm that wasn’t a farm.  The whole programme only lasted 30 minutes, a good chunk of which was stock and ‘YouTube’ footage, interviews with dissidents, analysts, and experts, none of which required clandestine filming in-country.  There were precious few penetrating questions: why did nobody ask why the lights kept going out?  And if they did, wouldn’t the answer have been illuminating (pardon the pun)? The first minute set the context for broadcasting this programme, and I quote: an “unstable, aggressive” country “marching towards armageddon” and “threatening thermonuclear war on the USA”.  One analyst stated that, while North Korea wouldn’t want a nuclear war, one was certainly possible due to a “disastrous miscalculation”.  On this evidence the decisions taken by the BBC to expose the whole world, and the ‘human shield’ LSE students, to risk were wholly unjustified. Two expatriat-dissidents said that dissent, even questions, would inevitably lead to summary execution: on that basis what justification do John Sweeney and the BBC offer for the consequences for the two hapless tour guides whom they have so publicly humiliated?

We learned so little that was new about this closed society that I can’t help wonder why the BBC bothered to air it at all.  It may have been a coincidence that the programme was filmed at a time of “escalating tensions” (to quote from the programme) but I am more certain than ever that the decision to broadcast it now, despite the delicacy of the situation, had more to do with BBC opportunism than the need to inform the “public interest”.  Shame on you BBC.

I can’t even be bothered to GRRR.

Ding Dong the World is Dead

The death of Margaret Thatcher has spawned a popular protest, in the form of a re-release of a record from The Wizard of Oz – “Ding Dong the Witch is Dead”.  The BBC decided that it would not ban playing it, but would only play a 5 second excerpt as it was deemed potentially offensive.  Days later the same BBC decided to broadcast, in full, a Panorama film made clandestinely in North Korea, under cover of a London School of Economics study trip – at a time when the North Koreans are hyper-sensitive about outside pressure and have their finger on the nuclear trigger.

That’s double standards, isn’t it?  The BBC doesn’t want to cause offence by broadcasting a record that, in the context of MT’s death, might be tasteless, but cites “an overwheming public interest case” in support of showing the Panorama film at this time; I would sugggest it smacks more of an overwhelming journalistic case.  From the North Korean end of the telescope it can’t be seen as anything else but an example of western duplicity and spying, at least that’s what they’ll say.  And, would they be wrong?  All through the ‘cold war’ the west routinely ‘spied’ on communist bloc countries by infiltrating tourist or educational study groups.  I wouldn’t be at all surprised if some of the footage (and notes) not broadcast ended up with MI6 or the CIA and maybe was part sponsored by the security services in the first place.  The LSE was, at best, naive if it didn’t consider that possibility.

Whatever the truth of that, it is monumentally stupid, and self-serving, of the BBC to poke a caged, dangerous, and angry animal with a sharp stick when it could just wait for things to calm down.


Gotcha Thatcha

There can’t be anyone in the UK over the age of, say, 40 who hasn’t spent some time this week reviewing their opinions of Margaret Thatcher, who died last week.  I’ll nail my colours to the mast right away and say I hated her and everything she stood for. Last year I went to see Meryl Streep portray her in “The Iron Lady” and was quite taken aback by how angry I felt.  I first became aware of Thatcher when I was a student and she, as minister for education, withdrew free milk from primary school children.  “Maggie Thatcher, Milk Snatcher” was the chant then.  I am also angered that, even in death, she is manipulated by the grey suits of Tory politics to take the blame for what they, and some of the rest of us, were and are responsible for.

In many places this week she has been blamed for single-handedly creating the greedy ‘loadsamoney’ culture that ultimately bore fruit in the global financial crash.  Tosh.  She, and her backers, just created the conditions in which it thrived: the greed and selfishness of the 80’s and 90’s was just waiting to be unleashed and so it was embraced by many ordinary people.  She was doing what the rest of the Tory party wanted to do but didn’t think they could get away with.  Thatcher was quickly dumped by her own party when they realised she was an electoral liability (remember the Poll Tax?), so it wasn’t all conviction about a new order: hanging onto power was more imortant.  That’s how we got John Major instead of Neil Kinnock.  While it suited her party and her backers, they let her run her chariot all over the lives of ordinary people, as well as destroy the industrial base of Britain, and for what?  Buy your own council house (what a legacy of underprovision that has left for social housing)?   I see in one paper today that one of the first council houses sold to a sitting tenant back then for a  measly, and much subsidised, £8315 has so far been sold and resold for a total of £680,000 – yes, £680K.  Now you could argue that the wealth created by the sale and resale of that one house, in estate agencies, DIY shops and lawyers offices, is the epitome of free enterprise.  And let’s nor forget the individual wealth created for the erstwhile owners: the first owners sold it on for 7 times what they paid for it.  But it fuelled the notion of home ownership being a neccessity, not an option as it is in many less property-owning European countries, and the use of unsustainably ludicrous increases in value to underpin debt.  It appears we haven’t really learned from that: I saw an advert today offering ‘buy now-pay later’ terms on some IT kit – at 29% APR – and Pay Day loans, at up to 4000%.  I was absolutely staggered to recently have my ‘ethical’ bank offer me a loan, which I hadn’t asked for, down the ‘phone.  Apparently we are so wedded to consumerism that we are still up for debt to underpin a bankrupt lifestyle.  Ask any ‘Big Issue’ seller how they feel about the right to buy.

How about selling us shares in the industries we already owned as taxpayers, and which she privatised?  I know it will be argued that injecting the profit motive and “modern” management techniques revitalised otherwise ailing industries.  But what happened?  Energy companies, mostly foreign owned, make obscene profits while pensioners and the under/unemployed go cold in winter.  Our banking system is corrupted by roulette croupiers, our car industry is almost all foreign owned, as is what is left of our steel, while our railways stagger from one franchise crisis to another on 19th century infrastructure with shiny trains (with Richard Branson leering at us) that are overcapacity, and a fares and timetable structure you need a degree to understand, and an IT qualification to get the best value from.  The East Coast mailine franchise failed twice and, wonder of wonders, is running profitably under state control.  Meanwhile the Civil Service, and Local Government, having embraced the private business ethos, are heaving with private sector graduate-speak about mission creep, inputs, outcomes and risk analysis – but are they any more efficient at the coal face, where the ‘customer interface’ is?  Are they buggery.

Anyway, back to Mrs T.  What she presided over was a wholesale abandonment of the idea of “society”, in fact she said there was no such thing.  She sold us the idea that we would all be better off if we put ourselves first.  She took us, conveniently, to war in the Falklands; she cosied us up to Raygun Ronnie when he showed her the size of his cruise missile(s).  She emasculated the historic, honourable, trade union movement (leaving care of the weak and vulnerable to charities), destroyed our coal and steel industry, in the process disembowelling whole communities and consigning generations to unemployemt, and the even more cancerous poverty of hopelessness.  She gave us the conditions where the only ambition of a generation is “to be famous”.

One good thing she did was turn Scotland into a Conservative free zone.  It may be that an unintended part of her legacy is an Independent Scotland, but it would be a mistake to think Scotland is, or the rest of the UK will ever be, really Tory-free.  My dear old Ma would say “Scratch a Liberal and you’ll find a Tory underneath”; these days it’s hard to tell the difference between the parties as they fight over the so-called centre ground trying to out-tory each other.  I for one am glad to see the back of her but I’m happy to extend condolences to her family in the loss of their mother.  That’s the limit of my compassion, and as for a triumphal funeral procession through London – round Canary Wharf might have been more appropriate.

When Her Majesty’s Nuclear penis, HMS Conqueror, sank the Argentine cruiser Belgrano in the Falklands war, The Sun newspaper had the headline “Gotcha!”  Vile and tasteless as it was in that context I can’t think of a more fitting headline for this week’s Socialist Worker, or Daily Star.  ‘Gotcha’!



Lyme – To go ‘private’ or not?

Many Lyme sufferers that are failed by the state system go to private clinics, mostly abroad although there is one in Hemel Hempstead that specialises in Lyme.  Common themes in the described treatments from these clinics are:-

  • A long period under treatment (many months or even years)
  • A ‘core’ of standard antibiotics
  • A huge range of supplemental “naturaceuticals”
  • Testing for so-called co-infections, like Babesia, Erlichia or Bartonella  (almost invariably positive)

All of these are, pretty much, unheard of in the NHS resonse to Lyme Disease.  I, naturally, want to get completely well; there are endless stories of relapse on the standard drugs alone so I wonder about taking supplements.  I’ve always been open to an holistic approach to illness, so I am not worried per se by the addition of enzymes, vitamins and herbal preparations, but I don’t know what they are supposed to do or how they might interact with the drugs I am taking and I lean toward minimal intervention.  Some common additional medications are antimalarials, for co-infections, but I have read that they are also immunosuppressants which is not a good idea – I’d want to be supporting my immune system.  Commonly added enzymes seem to be Nattokinase and Lumbrokinase (and I have been using Bromelain).  These are used to disrupt biofilms which ‘cloak’ borrelia colonies and I have no doubt that when taking Bromelain I have had herx-like reactions which, I think, indicates that the pathogen has been made ‘free swimming’ and available to be killed.  There is quite a lot of talk about the role of iron in sustaining infection and I have seen it claimed that ‘starving’ the infective agent of iron would be helpful.  However the body needs iron to function properly, and I have also seen it said that increasing iron inhibits infection, so I don’t know.

I have been tested for these co-infections on the NHS, and the results were negative, BUT I’ve also read that a lot of these NHS tests are insensitive, or even ineffective: many Lymies who go abroad end up with positive test results when they have been negative in the UK.  So I wonder if I should pay for testing in, say, America and risk putting myself outside the care of my wonderful GP, which is the sort of thing that routinely happens to others (NHS doctors refuse to accept the ‘foreign’ test results as correct and deny further treatment, sometimes for anything and everything!).  If I can’t get my GP to continue my treatment beyond 24 weeks (regarded by some as too short a course) should I try to source antibiotics abroad or on the internet, with all the risks of drug security that this implies?

It’s a quandary.


Lyme – Sloppy TV Journalism

Yesterday, April 1st, Channel 4 TV aired a piece on Lyme Disease, as part of its series “Embarrassing Bodies”.  I’m not clear about why a feature on Lyme Disease would feature on a largely voyeuristic (if fascinating) programme on embarrassing conditions.  Any coverage on Lyme Disease is to be generally welcomed.  Short slots on programmes are, by definition, not able to cover a subject in depth so whatever they do say needs to be 100% accurate.

It was good to see that they estimated the number of cases at 3000 a year, and to state that it is becoming more common, but the programme makers stated that the most common symptom of Lyme Disease is a “bullseye” shaped rash at the bite site.  This is incorrect, as Channel 4’s own website for this programme, states – as few as 30% may present with a rash.  As any sufferer would know, the range of symptoms is wide, and often baffling to GPs, and it would have been more helpful to show how, taken together in the absence of the classic rash, they can nevertheless lead to an accurate diagnosis and, critically, early treatment.  It was good to see that they at least featured a sufferer who has been paralysed by the disease, but perpetuated the myth that you have to be walking in forested undergrowth to be at risk.  You could get Lyme Disease in your garden, and the sooner the population wakes up to that the better.

THEN, the very next day, another edition of the same programme said that you are more likely to get Lyme in the eastern USA than anywhere else, and that you are especially at risk paddling in fresh water!!  There was no mention of the large chunk of northern europe where you are equally at risk – especially if, in these straightened times, you holiday closer to home.

It turned out that this episode predated the 1 April edition but it is inexcusable to rebroadcast information that has previously been shown to be inaccurate and misleading (apparently it was widely flagged up to Channel 4 at the original airing).  The very least they could do is broadcast a correction.