Statins again

Picture courtesy of the Alliance for Human Research Protection

I have been overwhelmed by the information sent to me about the problems with statins. Thank you to all the people who did refer me to the right places. Thank you too to my net-friend who has always counselled about their over-promotion and extreme side effects, the inclination for that person to say a big 'I told you so' has so far been ignored and I am grateful for that.

What I have learned though is that these days we can't take anything our medics tell us at face value. I'm not GP bashing here so I hope that NHSblogdoctor doesn't get all irate on me. Our front-line doctors are not specialists that's what they're called GENERAL Practitioners, they are only as good as the information they are given. If the government and Big Pharma is pushing a certain view it is easier and less time consuming to accept that 'wisdom'. I didn't initially think I needed to challenge the advice that WH was given either, and I didn't. Now I have I am shocked.

One piece of my research has really brought the message home. Just watching this was like looking at WH in the litle box, ignoring the northern accent and substituting a deep westcountry burr, is like watching WH in the little tv screen. It could be him up there reciting his experiences. So it looks like this statin problem really has come to haunt us.

It is a sad indictment of these times that patients with complex medical problems now have to research their treatments themselves to ensure that the drugs they are prescribed for 'their own good' are not the cause of much of their wider illness. The drug companies have a stranglehold over the governments, the medics and the public at large the world over and make obscene amounts of money by peddling their 'non cures'. The big question is, how the hell do we stop them?

Happy Birthday to me ?

yes, it's that day again when I turn another year older. I haven't had quite the day I expected but the second half has been pretty good, culminating in a tea party more reminiscent of a five year old's not a fifty something's. The only thing missing was the jelly.

I think from henceforth however, I'm going to ban all family celebrations, as for the last several WH has been ill each time. Today is no exception, he along with oldest step daughter appears to contracting a particularly nasty virus. With his shoulder surgery scheduled in less than a week, it looks like we may be in for a postponement. Sod's law again conspires against us. Maybe not such a good birthday after all.

Statins

I seem to have been really busy the last few days and having WH with a major relapse of depression hasn't helped. All this could have been avoided had he not revisited the statin problem. With statins he is verging on suicidal, without them his cholesterol rises to atomic levels due to his hereditary high cholesterol, he makes it as well as eats it! Of course when he's taking them the whole mood dampening thing kicks in and then he lives on junk food, refuses 'proper dinners' with veg and his level rises even further as soon as he stops them. They also appear to make him extremely tired which dampens the mood further. We've tried the healthy eating kick and the plant ester supplements but it's extremely dificult for someone who a) hates most veg with a vengeance b) detests yogurts and c) would live on meat alone if he could or in a pasty or some other type of pastry if he could get away with that.....It's doubly difficult when my cholesterol level is low to mid range and I exist almost entirely on veg and fruit.

Conversations, if that's what you have with someone who answers only in monosyllables, have been fraught but there do seem to be some alternatives out there without the dreaded statins. My GP said there were 'other choices' but did not elaborate, his says 'take statins or drop down dead', not much choice there then. Next move I think, if I can persuade, him is to seek advice at a higher level, presumably there is a consultant out there who specialises in this type of thorny problem. Until then, we both suffer the horrid side effects. I'm still at a loss to explain however why the GP would put him back on them given the fact he was suicidal on them before, his quality of life on them is rubbish so they're not exactly preserving him for much.

Yesterday he was like a new man, unbeknown to me he had dropped the pills for a few days. It took 3 days for the mood effects to go. Feeling confident that I DID notice the difference, he promptly took one again last night. Looks like I'm in for another crap weekend.

Yet another NHS rant....

Whoops they did it again..... and this time it's not anyone in this household but someone locally using the same GP practice and whose treatment, or rather non-treatment, has shocked us to the core.

About 2 years ago this lady pulled a muscle in her side moving something awkwardly in the stockroom at work. A few days rest with a couple of analgesics a day had failed to improve the dull ache she felt. Six weeks later and the pain was still there. her GP said it would take time to heal, these things always did. A whole year later she was still experiencing pain in the affected side. Still the GP recommended, gentle exercise and to stop thinking about it so much. Eighteen months later and the pain was worse, she became yet another heart-sink patient," keep on taking the pain killers; take your mind off it; maybe you're depressed, have some antidepressants" ad nauseum. A appointment with a second GP, the first being on holiday reinforced the 'non-treatment'. Maybe it WAS all in the mind.

Eight weeks ago when the pain at night was unbearable her husband said he'd had enough and took her to A&E. After a few blood tests and such like she was kept in and had an MRI scan. The next day she was informed that she had something seriously wrong internally, most likely cancer of the liver. The following week she underwent a liver biopsy and another scan. Four weeks later she was finally told they had lost the results and she must undergo another. Last week she was admitted again for the second biopsy. By now weak and quite poorly it was questionable whether she was fit enough to undergo it. She had yet another scan and more tests. The day of scan dawned and she was told early on that she wouldn't be having one. The doctor would be down later to speak to her about it. By then the family was distraught, finally in the late afternoon a junior doctor appeared and bluntly told her there was no point having any biopsies, the cancer had spread to the pancreas, was widespread throughout her system. She failed to take it all in and in case was not told the prognosis in layman's terms, her poor husband had to relay the 'simple' explanation, "He means it's too far gone, they can't do anything". Cue to go home, although it was suggested a couple of days in the hospice might 'help her sort herself out'. A planned course of chemotherapy at the local centre of excellence had been cancelled. 2It wouldn't do you any good". Home she went to face a bleak future, no sign of any additional treatments for the now numerous weakening symptoms.

This week the chemo team rang, "Where are you? You should have started treatment today". On being told that it was all cancelled as it would be pointless all that was rubbished, "Nonsense, we can make you feel more comfortable, deal with some of the symptoms and give you a bit longer with your family. She declined the opportunity unwilling to throw her hat in with the NHS any longer.

National Health SERVICE? If that's what they call service you can keep it.

The honeymoon is over - again

I've had my last GP for just under two years. I've always got on with her pretty well and she has been very supportive of my Lyme treatment within the confines of this practice. I wasn't too impressed that she hadn't spotted the problem with my foot last year, see here, here and here , but then neither did 2 other GPs and a nurse, but overall I'm as happy as anyone relying on the NHS can be. Until yesterday that is.

As I have blogged about recently my Lyme symptom free period has come to an end and I am awaiting a consult with my LLD (Lovely Lyme Doc). Obviously then I have some symptoms to consult about. My hands are like wood which are trying to curl up at the sides as well as along their length and which are very painful most of the time, my feet which are trying to do the same and are painful to walk on, and stiffness everywhere for at least 2 hours each morning and then periodically throughout the day. All in all symptoms of Lyme related Rheumatoid Arthritis. My weight loss has slowed right down too, but given that I am not so active and that Lyme tends to make you put on weight I wasn't too worried about that in the light of my 3 stone loss this year so far.

So, my suggested treatment to help me put up with this lot until I can kill a few more spirochaetes with the appropriate medicines? Go on, have a guess. Walking. A 30 minute brisk walk 5 times a week. It will help me lose weight and keep up the good work. I should examine my diet again too, to rev up the weight loss which of course will make me feel a whole lot better. My carpal tunnel syndrome which only appears when the RA is at it's worst will go because I will have lost weight around my wrists. No mention of the horrid lumps which have formed on the palms and the soles of my feet and which went shortly after beginning the original Lyme treatment. No mention of anything for the pain. And if I want to lose weight even faster perhaps I could come off the beta blockers which I have taken for over 10 years because of strange palpitations, valve anomalies and other Lyme related heart problems, it slows me down and makes me sluggish and stops me losing weight.

"How do I walk that much when I'm in agony?" I asked. Answer: Think of the good it's doing you. Walking is apparently much better for you than anything else including hard digging as it raises your heart rate and gets you breathless, you can work your arms too as you walk to increase the calorie uptake. Having done a lot of digging in the last week, (3 hours a day on 3 separate days admittedly interspersed by lots of little rests), I have been removing concrete from the patio, raking and wielding a pick axe then sorting flints and stones for a drainage bed, I realise I was wasting my time I should have been walking instead.

I relayed all this to WH tonight as he dug out part of the lawn for a flight of steps, with the pick axe on our extremely heavy clay. If the doctor can do this at this speed without losing her breath then she's in the wrong job" he retorted, "I do it for a living and I'm still knackered and out of breath".

What is it with these GPs? Are they now only trained in certain illnesses/problems as determined by the latest fads of Her Majesties Government? What happened to old fashioned medicine, compassion and seeking to help the patient? The Hippocratic oath states "I will keep them from harm and injustice", perhaps it no longer applies to todays doctors?

Settling in - part 1

We're a two cat family again since the demise of Goggins a few weeks back and the fur babies are finally settling down. I still think of them as kittens although they were six a couple of months ago. The house was very strange to them at first but now Misty is taking it well in his stride and Nelson is getting there slowly.

The day of the big move I was awol in Exeter whilst WH and mates did all the hard work. Firstly he caught up the three babes (we still had Goggins then) took them round the corner in the van and deposited them in his new bedroom which was all furnished and lovely and complete with their toys, other favourite things, food, water and litter tray he'd made from an upturned manhole cover. So far so good. He shut the door on them and the move commenced. So did the noise. All three started howling as only a cat can and kept it up for a good couple of hours. I'm glad I wasn't here. When all was done about noon, WH duly opened the bedroom door so that they could have a look round. Misty shot off and wasn't seen again, Nelson and Goggins had decamped to either side of the window cill and would not be prised off, not no way. No food had been eaten and the litter tray untouched.

And there they stayed until I got home at about 7pm. Misty was still missing though how he could have got outside was a mystery but then he's that sort of cat. I wasn't so convinced, I was sure he was holed up somewhere and just knew that when his stomach got the better of him he'd re-appear. The other two still stayed put too. Eventually I began to sort out my room and make up the bed, emptying bin bags full of clothes into drawers and all the while talking to myself in a very loud voice.

The scuffling started in the corner of the soon to be second bathroom behind a pile of mattresses, then a whimper, then an anguished cry. Finally a little face peeped out of the side of the pile and the hiding place was revealed. Misty had been there all along, not a metre from the door of the bedroom. Nelson stayed on the window cill but Goggins bravely followed WH downstairs, had a quick, manly cuddle, a mouthful or two of tuna and went out of the back door to explore the garden with WH, down the side of the house and back in via the front door. Piece of cake. He'd got his bearings and went in and out a few times quite happily. Being senile I suppose he forgot where he was and so long as he had WH in his surroundings he was OK.

We tried to feed Misty and Nelson their supper in the hall, hoping they'd come downstairs. They didn't. I took some smelly fish on to the landing and they still stayed put. Eventually we gave up worrying and went to bed. Once in the dark, they shot out of hiding and jumped on my bed, only to spend the entire night as close to my head as possible to make sure it was really me. About 2am they were joined by Goggins who had spent the intervening period walking up and down the landing looking for WH and not quite finding him. I was second choice so I had to do. Needless to say I had no sleep whatsoever although WH did his customary 'head-on-pillow, sleep-for-10-hours' trick. At six am I got up and was followed downstairs by two starving, grey cats. I fed them then let them out into the garden, going with them for a few minutes. Nelson shot back in, Misty shot off over the fence. Nelson retreated back to bed for safety. Later I spent a few minutes showing him where the cat flap was but he hated it, he'd rather go through the patio door. Goggins was fine, had a second breakfast and went to sit on his garden chair which we had thoughtfully moved to the new garden and placed in the sun for him.

At about 10 I thought I'd take some stuff to the other garage, I drove up, parked, and then my neighbour accosted me, just as Misty peered sheepishly out from behind a bush glaring at me and staring at the old house. I must have been on form that day as I quickly grabbed him, shoved him in the back of the car, covered him with an upturned box weighted down with another heavier one, and drove the 200 metres back to the new house. He was mad at me for doing that and kept up a stream of abuse even whilst I got him out and put him back in the kitchen. I gave him some fish to reinforce the fact he was now 'home' and he forgot his anger for the thirty seconds it took him to eat it. Since then he always returns. Now Nelson is the problem. He goes visiting his old haunts and can't remember his way back.

Meet the gang 'cos the boys are here........

We haven't seen many birds in this garden yet. Several reasons 1) it still looks like a building site and at any given time there is likely to be someone out there making a noise of some description 2) the bird feeding station WH had for his birthday was really put in the wrong place, in the centre of an open space backed by a neighbour's eucalyptus tree 3) the resident cats are still staking out their new territory and patrolling fences to repel any potential invaders and 4) there are not nearly so many big trees. Despite the fact we are only 150m as the crow (or any bird for that matter) flies from the old place it really is quite a different habitat to get used to.

Yesterday, however, I took advantage of the good weather to remove the timber mountain from the future lawn, move all my pots of stuff awaiting transplant and had a general tidy up. I had to leave the cement mixer as it is needed later this week but 7 builder's dustbins were moved to the yard along with bags of sand and enough tools to stock a shop. I also moved the feeding station adjacent to the apple trees, with a neighbour's buddleia and a laurustinus nearby for extra cover.

This morning large as life I had a small flock of about 15 long tailed tits casing the joint and sampling the menu. They hung around for about half an hour until a neighbour's cat (thankfully not one of mine) appeared over the fence and looked menacingly at them. I took that as my cue to frighten him off and so the birds went too although half a dozen were back again in less than 5 minutes joined by a couple of great tits and a coal tit. I'm hoping this will be the shape of things to come and that they liked the new restaurant and will bring their mates. I now just need to attract the flock of goldfinches which fly past several times a day but as yet have not seen the niger waiting for them and it will finally seem like home.

Barking Mad

Before I moved I was looking for peace and quiet and a calmer existence than I had in the other house. After 23 years behind a noisy estate, the last 12 of which having noisy dogs next door I thought I was due a little quiet. Well the old adage 'you never know what's round the corner' certainly rang true here. I sit writing this to the sound of a dog frantically barking and whining. This will probably go on all morning. I've started recording the dates and times and find it sometimes barks for 5 hours at a time.

A chat last weekend with my neighbour about this only elicited the response that she'd never heard it and it was 'only' because the dog, a Jack Russell, was caged when everyone is out of the house, the reason being it chews the furniture when it's alone. The problem which became apparent when we were building the extension has worsened, we thought it was due to strange noises and builders being around, we didn't realise it's ALWAYS like this.

My hands are now tied on all this, if I take further action, ie. involving the local council noise people I would have to declare this as an impediment to a sale should I wish to sell the house at a later stage, it's part of these new Home Information Packs. Seemingly I may as well talk to the dog as talk to the owner for all the good that did.

How do I get out of this one? Will my ears ever be free of barking dogs? This one is slowly driving me nuts, I can't think and I can't seem to escape it. Stressed out just doesn't begin to cover it.

So that's how they shorten the waiting lists

This is the diary of someone I know on a NHS waiting list.

Mid January: Patient goes to their GP and is referred to a speciality clinic.

February: An appointment is received for 9 March.

9 March: Patient turns up to the clinic and is told that they had been sent the wrong date by mistake; there was no one there to see them. A new appointment is made.

12 March: Patient attends first session at clinic which is basically filling in some forms and a brief 5 minute chat. An appointment is made for to begin a course of treatment in April.

April: The treatment clinic appointment is cancelled by telephone the day before it is due to take place because the patient has been referred to 'the wrong type of person'. A referral to another clinic will be made.

May: Patient calls up and asks why they had heard nothing. They are told that their referral letter has been lost and the clinic will have to ask the GP for another one.

Early June: GP calls the patient and says he has been asked to do another referral, do they still need it.

Mid June: Patient receives a letter for an appointment on 9th Sept .

Late June: Patient receives a phone call saying the appointment date on the letter was wrong and a new one would be sent. Receives another letter changing it to 10th Sept

9 Sept: Patient receives a phone call cancelling tomorow's appointment because the referral should have been sent to the Primary Care Trust and not the Community Health Team so the referral has to be made again.

NHS Choices has this to say about waiting lists:

Since 01 January 2006, no patient in England should have to wait more than 13 weeks from when they see their GP and the decision is made that a referral to a specialist is necessary, and their first outpatient appointment.

Well we know better don't we? This way, the patient gets off the waiting list and has to start again, best of all they receive no costly treatment so are saving the NHS money too. Wonderful isn't it? There is no involvement from any medically qualified staff at all, it can all be managed by pen pushers.

RESULT! A cost saving and a shorter waiting list to boot. And I thought that the NHS was here to treat us.

It's just a shame that NHSblogdoctor is still on holiday, he'd enjoy this one.

Lyme rears its ugly head again

Borrelia burgdorferi, the bacteria responsible for Lyme Disease; Nature,

International Weekly Journal of Science

I stopped taking the antibiotics prescribed by my Lovely Lyme Doctor (LLD) 5 months ago. After the side effects (extreme photo-sensitivity) wore off I felt brilliant. This continued for the next 16 weeks or so. I have done so much this summer that I never even dreamed about.

Now I have to report that a few of the Lyme symptoms are creeping back, notably the Rheumatoid Arthritis which is making life somewhat difficult now. As always it's my hands which are affected worst; on waking every morning my right hand is locked solid and I have prise open my fingers one by one. My left hand is stiff and feels like wood like the right one but at least my fingers do open albeit somewhat painfully. On a bad day I am now unable to use my right hand for much for about 3 hours, having very little movement or indeed grip. Dressing is a pain and recently we have had to resort to WH dressing me, not least because the Depressed Painter has been in residence and he arrives at the unearthly hour of 7.40am; confronted by a partially dressed me, he would be twenty times more embarrassed than me so I HAVE to get dressed. Dancing at the Hayseeds gig the other night had the effect of making both my hands swell up to Michelin proportions after which I had no real movement and certainly no grip, good job then that it wasn't me who had to drive our little party home.

Luckily the crushing tiredness isn't there (touches wood frantically) but I've had the odd bit of peripheral neuropathy and the dreaded crawling sensation across my right shoulder blade. My weight loss has come to a halt too (at 19kg or 3 stones) it's proving almost impossible to get back on track and I so wanted to lose a further 6kg or so before Christmas making it 4 stones in twelve months. I already have my eye on Monsoon's window!

So all this leads me to the conclusion that I will have to start the treatment again, those Borrelia bugs must have come out of hiding in my nervous system and be multiplying again. Got to stop them in their tracks. To this end I am awaiting an appointment with the LLD which neatly leads me to my next revelation. It seems that WH may have Lyme Disease too. He is now in a worse physical state than me with all the symptoms I had at my worst and then some. He is extremely poorly right now and struggles to carry on working. He had an NHS Lyme test a couple of weeks ago and as yet we have no results. For the mean time his GP has referred him to the LLD too. A double appointment (and a big bill) beckons but it will be worth it. I am still overall fitter than I was for the last 16 years, I just hope and pray that WH can improve as much too.

Net Friends

A few weeks ago we travelled north spent two evenings in the company of those Boys from Deer Lick Holler and also had the opportunity to spend some time with a couple of my closest friends. The amazing thing is that one of those, I had never met 'in the flesh' as it were until then. I have known this person almost 7 years here on the net and because of the distances involved and the fact that neither of us are particularly well we had never been able to engineer a meeting before.We originally met on an American run chat site specific to our ailments, or in my case the the 'wrong' diagnosis I was being treated for. Eventually Board Wars caused that site to disperse and we moved elsewhere to another American site. The same thing happened again, so we gave up the chat sites and contact each other directly now. The third member of our little group comes down here on holidays and we endeavour to meet up then, the last time being about 4 months ago. It was a lovely meeting, we all gabled away as though we had been around each other for ever. It felt comfortable and easy, not at all like being in the company of strangers, even the Worst Halves felt like they had known each other a while.

Tomorrow we travel to Bristol to see the band again and will meet up with other friends originally found here on the net. Wonderful to think that our paths would never have crossed had it not been for the internet.