Sure fire TV hit format

I was watching another repeat episode of Antique Downton DIY Celebrity Gardening Bake-Off the other night and thought, wouldn’t it be great if TV executives would stop taking the easy way out and treat us all as sentient beings instead of ratings fodder.

British Gas In **se from Elbow shock

We moved to a rented house in August and, despite many ‘phone calls and e-mails up to now (6 November), have failed to establish a customer / supplier relationship with British Gas for energy.  I have just handed over to our landlord a sheaf of letters addressed to her, and two to previous tenants, all but one in error in one way or another.

Apparently the property is known to British Gas – power comes out of the sockets and the lights work as do the cooker and central heating.  The problem, or the main problem, is that until we have an account for each untility (it’s a dual fuel account) we cannot switch to another supplier, at a better rate, nor can we  take advantage of discounts for paperless billing and payment by direct debit and our landlord is still technically liable for all energy used.

I have spoken with so-called customer services agents in various parts of the UK and, believe it or not, South Africa: all to no avail.  I have been told that the problem at their end is a “systems issue”, but no-one can say what that means or how long it will take to fix.

I thought that privatisation was supposed to bring efficiencies to the utilities, but all it seems to have done is fragment industires, create duplication, minimise real customer care and maximise profits.

PS

Eventually this was resolved (we hope!), but it was VERY hard work.  It is no wonder that there is inertia in the public who are exhorted to ‘switch’ in all sorts of industires (telecoms, energy, banking, insurance, mortgages etc.,): I think they are legitimately fearful of the chaos that might follow – I know I am.

Lyme – Just when you think it’s all over…..

I stopped taking massive doses of oral antibiotics, after 9 straight months, in mid-August.  For a while, despite the physical and emotional stress of moving house, and country, everything was going well.  Then, towards the end of September, I picked up a virus – that awful coughing thing that lasts for weeks, which developed into a chest infection.  Having a stash of ’emergency’ antibiotics, for Lyme Disease, I put myself on a 7 day course of Amoxycillin, and that seemed to knock it out nicely.  I began to have the odd Lyme-like symptom but ignored them: as those who have Lyme will recognise, it is all too easy to see Lyme at the root of every ache and pain.  Then it was time to register with a new GP and have a through check-up.  I need to lose weight and my blood pressure (exacerbated by ‘white coat syndrome’) was a bit high but otherwise OK.  Come back in 6 months.  Then I had a few more symptoms, nothing heavy, but more things, followed by the flu-prevention injection in mid-October.  I thought it was time to check this possible resurgence of Lyme and put myself on the full-blown triple antibiotic therapy for 9 days.  It was only 9 days because I stopped with an unfortunate reaction (odd, given I had never had a stomach problem at all in the 9 months of treatment).  At about the same time a number of the symptoms got noticeably worse: muscle twitches and cramps are back (mild but there), my legs seem weak, poor sleep again,joint pain, more noticeable tinitus.  I’m off to the osteopath today because my back is playing up (I think this is unrelated).  So the $64,000 questions are:

1) after 9 months of treatment, did the Lyme come back?

2) or did the virus just knock me back (my immune system still being ‘flat’)?

3) or did the 7 days of Amoxycillin I took for the chest infection have some other effect (like attack some remaining Lyme)

4) or did the flu jab, which is supposed to be an inert vaccine, provoke something?

5) or did the 9 day ‘triple’ antibiotics actually provoke a Herxheimer reaction because there was some residual Lyme Disease?

I confess I don’t have a clue, although I definitely don’t feel as well as I did 2 months ago,  Any ideas?

Civic Delinquency

I recently began using my senior person’s railcard.  Quite good, in parts, but partly prompted by the concurrrent debate on HS2 (proposed UK High Speed Rail line) I thought I would use the experience to add my two pence worth.  It seems the management (aka government) reckon spending several billion is justified on the grounds of increased network capacity.  I reckon you could get more bums on seats, without spending much at all, if the train staff were empowered to charge fares for every seat occupied by a bag, pair of feet etc. as well as the owners of same.

Last week I travelled on a morning service from Axminster to Exeter, early enough for it to be crowded with late commuters and early shoppers (like me).  A young man was sitting alone in a table-for-four.  He had placed himself on the aisle and had his feet on the seat opposite, effectively blocking access to the other two seats.  Across the aisle was a ‘mature’ lady similarly spread across two seats from the aisle where her butt actually was.  In the disabled area a young woman had filled the extra foot space with shopping bags and was sitting cross-legged on one seat, sideways, while she used the other seat as a cross between a social-media hub and office.  The conductor came through asking for tickets, and said nothing.  A community police officer came through and said nothing.  It seems that those with the brass neck to ‘claim’ as much space as they want rely on the British reticence to cause a fuss and the fear of being embroiled in an altercation: people getting on further down the line passed by looking for a seat and opted to stand.  I call this civic delinquency.  If every seat had a fare paying bum in it wouldn’t that help the capacity shortage?  Of course, those trains in the rush hour that are full to overflowing round London have no spare space – but HS2 isn’t going to ‘do’ commuting is it?

I can’t understand how, from a safety perspective, the train companies get away with that: even a minor derailment in a sardine tin is going to result in more injuries or fatalities than if everyone has a seat.  Airlines aren’t allowed to have standing passengers, yet the take-off and landing phase of a flight is the most probable time to have an aviation accident and at speeds comparable with our existing trains, never mind ones that go at 200mph.

Lyme – Watching, waiting and getting on with life

After 40 straight weeks of the triple-antibiotic therapy, and on the very day I moved into a new home and a new country, I stopped treatment.  Now,  six weeks on, I think it is time for a review.  The first thing to say, as a headline, is that I am improved and I think I continue to improve.  It hasn’t been all plain sailing though: I’ve had two periods of ill health since then, one of which resulted in me self-medicating with Amoxycillin (antibiotic) for a week.  I got a respiratory virus which ultimately morphed into a chest infection.  After another two weeks I’m more or less clear of that.

A much more interesting episode occured about a week, to ten days, after stopping the medication which I think may have been my immune system somehow ‘resetting’ or my body ‘clearing out’ after the medication.  I suddenly developed a temperature which waxed and waned for 3 days, bouncing between normal and 102 deg.  I was sweating profusely, even when my temperature was ‘normal’, sometimes in the day and sometimes at night.  It was sufficiently worrying to cause me to register with a doctor who took blood and sent me off for a chest x-ray (for possible TB!!) – all of which came back unremarkable, except for a borderline result for a diabetes marker.

Meanwhile I have been able to walk further, and more regularly, and generally have suffered less muscle pain, fewer episodes of cramp-type feeling.  For the most part I am sleeping better and thinking more clearly .  During this period I have been coming to grips with a new home / location, doing more driving, helping look after my step-granddaughter on a regular basis.  I think all of this is really positive, but I still have 7 weeks-worth of the triple antibiotics in a drawer in case.  I’m monitoring my health and recording anything that might be Lyme rrelated  on my spreadsheet.  Next week I’m off to London for three days, one of which will be spent at a Lyme conference sponsored by Public Health England.

 

 

 

 

Lyme – Beyond the edge

Well, my GP prescribed more drugs; what a star!  That’s me well beyond the edge of what others have had, and particularly the English doctor whose article in the British Medical Journal started it off.  She went 24 weeks on this combination.  It was, probably, influenced by the news that I will be out of his care by mid-August as we have finally found a buyer for our house.  The stress of organising a house move in a short time, to rented accommodation 700 miles away (and yet to be identified), will probably have some impact on my recovery, but hey-ho.

So I’m trying to decide now whether to stop taking medication when my present stash runs out at the end of this week (32 weeks) and hold the new prescription, of 8 weeks worth, in reserve for any major relapse.  When we get to Devon I’m going to have to find a new GP, preferably one with an open mind (experience of treating Lyme would be too much to expect) but that will take time and, with ‘no fixed abode’, we will probably be treated as temporary residents.  The NHS is a national resource, but Scotland has devolved health care so my GP is writing a “to whom it may concern” letter, to help introductions to new doctors.  He’s also getting my blood test records to take away: I asked for the full record, that is not just “Positive” or “Negative” but exactly the type of test, where it was done and the detailed results (in medic speak).

Meanwhile I’ve had a mini-relapse: some tingling (including a new one on my face, like shingles), ankle swelling, tiredness, muscle pains and spasms.  This has prompted me to wonder if, after all, there is some grain of truth in the orthodox medical position that after appropriate treatment there is such a thing as “post-treatment syndrome”.  I don’t want to believe that after 31 straight weeks of aggressive treatment the Lyme has had a resurgence.  Perhaps it’s the first impact of house-moving stress?

Careers Advice

I overheard this conversation between a small girl and her father, at a bus stop in London, the day before yesterday.

Girl: Wha’ sort of fing would I be good at ven?  Could I do ve dogs trust, or maybe ‘airdressin’?

Father: Nah.  I should fink speech ferapist.

Lyme – Time to Take Stock

My existing stock of antibiotics runs out on 19th June, the day after I get back from a trip to Devon, so I have to think about making an appointment with my prescribing GP now, before I go.  By then I will have been on this ‘triple’ drug regime for 30 weeks and there is no doubt in my mind, and confirmed by my wife’s observations, that I am improved and still improving.  I am not asymptomatic but those symptoms that remain are less in frequency, amplitude and duration, but the trip will involve two flights, some train travel, a good bit of driving, sleeping in a strange bed and a lot more general ‘activity’: it is going to be tiring as well as stimulating.  It is for these reasons that I have been prompted to review the last 28 weeks and set them against what I see happening with others on the same or similar treatment, and on other treatments, as reported on various patient groups.

It is clear that we, the patients, all start from a different place: we are different gender, different ages, different genetic make-up, presumably different health baseline before getting Lyme.  Some of us have been bitten once, some many times, some of us were diagnosed relatively quickly, but may have been asymptomatic for a long time, some remain undiagnosed and self treat, some are on relatively uncomplicated treatment for short periods, while others (like me) are taking lots of stuff for a long time, some are repeatedly treated with varied drugs.  Very, very few are brave enough to declare themselves fully cured or even largely recovered – especially in the long term.  I have friends who are in periodic relapse, even after long (years) of treatment, and know others who are improving only very slowly and inconsistently on the same drugs that I take.

So, in thinking about what I should do after week 30, I have nothing much to measure against: should I just keep on doing the same (assuming, and it is a big assumption, that my GP will continue to prescribe), should I stop for a while and see what happens, should I try a different approach?  In the last month I have added a couple of herbal supplements to my pharmaceutical drugs: I was already taking an enzyme, Bromelain, as a biofilm disruptor.  Bacteria like to ‘cloak’ themselves in biofilms which drugs find hard to penerate.  Now I also take Astragalus and Ashwagandha because they both stimulate the immune system and are anti-inflammatory.  My memory is vastly better; I am able to hold a multi-threaded conversation, recall names and numbers, in short I can think straight again.  I have hardly any muscle spasm, cramp or joint pain.  I still have poor stamina, but then I am unfit and overweight, and effort does tend to take a couple of days to recover from.

I have come to the conclusion that we, patients, orthodox medics, so-called Lyme Literate doctors (LLMDs), all are scrabbling around in the dark experimenting: nobody really knows what is going on, if we did we would all be following a well defined and proven protocol from diagnosis to cure.  In short I think one of the main obstacles to finding a reliable, effective, treatment is the deluded belief that there is one answer, indeed any answer.  All we can do is try to be consistent in what ever treatment we decide to follow, to record what we do and what are the consequences, and keep an open mind.  It is understandable that pain and decline lead to desperation and panic but I believe that it is very counter-productive to our individual and collective well-being to ‘cherry-pick’, and skip from one treatment to another but it’s easy for me to say, from a perspective of relative good health, that we would all benefit from being less frantic.  It may only take one significant relapse for me to change my mind.

 

 

 

 

Cream Tea Mystery Solved!

Here is the latest piece of non-research for you to get your teeth into – courtesy of the Daily Mule.

Dr Eugenia Cheng, a mathematician at Sheffield University, has apparently devised a statistical formula for the perfect combination of jam, cream and scones for a perfect cream tea.  She says that the best weight ratio is 2:1:1, which means an average scone, weighing 70g, requires 35g of jam and 35g of cream.  Dr Cheng set the ideal thickness of the scone, with all its elements added, at about 2.8cm, allowing a relaxed open width of the mouth when taking a bite.  Curiously the composition of the scone itself (flour, fat, weight of fruit) is irrelevant, as they are not mentioned.  This poor piece of research also fails to mention wasps, splinters from the picnic bench, stainless steel tea pots that pour everywhere except into the cup, and cheap florid crockery (cracks and chips optional), all of which are traditional ingredients of a cream tea, essential for full appreciation of the British summer experience.  Oh, and rain.

Who pays these people?  Oh yes, we do.  GRRR.

More loony research

I was watching the TV news the other night and in amongst all the doom gloom, the mayhem and murder, was this gem: several universities working together have decided that penguins don’t fly because of…………………………………… their wings.  Thank God for that, it’s been keeping me awake.