Harm and Hippocrates

A month on and the Samento and Banderol have gone out of the window again. I was herxing so badly I was unable to do any work and this is my other busy period in the year.  The 6 weeks between the end of October and the fist week in December is prime Christmas selling time and I have been inundated with orders. So I'm back on my normal regime of arthritis meds and pain killers. 

I'm also worried about my increasing inability to walk more than about 20 yards and this is giving me real problems at shows when I have to stand for the best part of the day and where you rely on legs to get you about. Coupled with the fact I seem unable to carry anything at all, doing a show on my own is almost impossible unless I can park right next to the venue. The purchase of a mobility scooter is looking a lot more likely. WH does all the fetching and carrying for me but his arthritis is worse than ever this year, so bad in fact he's booked a GP appointment which is almost unheard of.  Between us we are a right pair of old crocks!

I'm planning on doing the samento etc again after Christmas when I have 3 months of work purely at home. My Gp has agreed to refer me to the new National Lyme Clinic in Winchester, that was a couple of weeks ago and I have heard nothing since. A request for extra antihistamines for my ever increasing itchy rash was met with agreement to my face and total refusal when I tried to collect the prescription. I am also awaiting yet another dermatology appointment, but I'm not holding my breath. Meanwhile the antihistamines are an OTC drug so guess who's buying loads in Boots?  

Once again the NHS conspires to confound those of us who really need their help, the chronically sick. The GMC website has a fascinating page on the duties of a doctor. It makes interesting reading. I thought that one of the tenets of the Hippocratic oath was do no harm, all my dealings with NHS medics seems to be at odds with this, harm is done by omission.   It's about time someone started to take some notice.

Fuzzy-headed with boots on.

Well this week so far I've been scanned twice, had some blood taken, seen the bones in my hands on-screen looking like join the dots and been radio active. Yes, it's all happening here folks.

Dr Thorough ordered all this lot and the scans originally were a day apart but with some help from the receptionist at our Medical Imaging Dept I managed to get the second one done whilst I was waiting for the isotopes to start working for the first one.

Interesting experience being rendered radio active. One of the many warnings were to ensure no-one else came into contact with my urine for 24 hours. I was amazed they thought they needed to tell people that. Maybe they thought I was some sort of fetishist but well really, how odd, seeing as I am fully capable in that department. I was also to avoid kissing babies, so wouldn't do for politicians then. I had no warnings, however, about the weird, fuzzy head which seemed to come on almost immediately the liquid went in my arm. To kill time whilst it activated, a period of 3 hours, I went to Tescos and did the weekly shop, I forgot half and had to go back last night. Not cheap though, I managed to spend £95 the first time and the stuff I forgot was £32. Frightening for 2 people and 2 cats for one week. But I digress, I was walking round Tescos as though in a trance (hence the purchase of a set of baking tins and some roasting tins too) and I was trying so hard to concentrate that even the till woman seemed to think that I was a druggie or something. Didn't go well either when I chucked a pot of nacho dip straight over the conveyor and onto the floor, cue colleague announcement, "Cleaner to till 4 immediately, customer spillage." No one came.

I returned early to the hospital for a regular bone scan, hips and lower spine. The scans only took 4 minutes. Getting into position for the lower spine was another matter. Lie flat on back, bum pushed towards bed. Place feet 2-3 feet apart. Then turn toes in towards each other, making legs as flat as they will go. At this point some sort of plastic wedge was shoved between my knees to keep my legs still. Finally a thick plastic strap was velcroed over which pushed my toes each side down into the bed. If I couldn't get my legs flat apparently they could then weight them with sandbags. Luckily I was deemed flat enough. Then "Relax, and keep as still as you can for 4 minutes."

10 minutes later I still couldn't get off the bed and my sacro-iliacs were screaming. "Now that wasn't too bad was it? " I muttered something unintelligible and fled to Nuclear Medicine who were by then almost ready for me.

Having been asked at the MRI last week to remove all my clothes and to wear surgical scrubs in order to 'preserve the cleaniless of the examination rooms and equipment', I was expecting to get changed or remove outer clothes at least. The Bone scan required no shoes and the removal of anything containing much metal, underwear OK, biker's leather belts, NOT. The Nuclear scan however required nothing in particular, only removal of my glasses lest the moving bits of the machine damaged them. I was nevertheless still totally unprepared when I had the foot image done to be asked to put my feet, which were STILL INSIDE my walking boots, flat to the table and bend my knees so the soles were flat on the bed. No problem. "This machine can see through boots." Yeah but what about the metal bits? And the dirt?

Lastly, I had a separate scan of my hands and for this I could seen the screen clearly as the image was produced; I was by now sitting with my hands on an imaging table. I asked what the strange scan was in the left-hand of the two screens.

"Oh we're not interested in that, it's just part of your head and arms and your head's all fuzzy." You bet it was by then.

The NHS lets me down again

Two weeks ago I saw a new Rheumatologist, new to me but not new 'in post'. WH had seen this chap once and we were both impressed with his approach, study ALL the notes, ask endless, seemingly unrelated, questions, quick-fire fashion all whilst his brain was processing the information at lightening speed. As it happened, he didn't think WH's problem fit his diagnostic criteria and recent events have confirmed that. I was thus prepared to be dazzled with the speed of a clever doctor's mind working overtime for me and overwhelmed by having to answer and hundred questions at once. I was also apprehensive that he would, like his colleagues dismiss me as another, over worrying 50-something.

Disarmingly he greeted me with a smile and with the words that he had studied my entire medical history and had noticed a large number of random ailments which he thought just might be connected. He said I had previously seen all the Rheumatologists in the district and now maybe I should get some answers. He proceeded to outline my collection of symptoms, starting at age 12 and a problem with my wrist, through sacro-iliac problems following being hit with a hockey ball the following year until he reached recent matters with my hands and feet, via skin rashes, allergies and the myriad investigations of the typical heart-sink patient. He then examined me and again surprised me by seemingly ignoring my hands other than a cursory glance and paying far more attention to my arm (long standing rash) and my feet which he poked and prodded and caused more pain then I have ever had in them and that's saying something. He asked me about cortisone I had had in my hands, shoulders and feet and got me generally confused and reduced to a gibbering wreck as I tried to answer him succinctly and quickly. After all, who can remember the precise date they had an injection in the sole of the foot, the pain, yes, but the month, possibly, the year probably. And so it went on. He told me to get dressed and then shouted from the other room to ask if I had ever had anything wrong with my scalp. I had, I have right now. He rushed back in and stroked all over my head, with a gentle version of an Indian head massage. 'Very extensive' was his only comment.

Returning to the office fully dressed, he appeared to be surfing the internet. I sat and waited. Finally he asked me about my family if anyone had arthritis - all except my mother, or psoriasis - my sister, my cousin. He then delivered his verdict. I have probably had psoriasis most of my life and now have full blown Psoriatic Arthritis. He described in detail symptoms I had which no doctor has ever made much of, the rash I can feel but is invisible, the joints which feel like they will burst, the itch I have had for upwards of 10 years but which will not go away, the sores I had on my head and which lead to long term bullying at school. My miraculous recovery last year was due to 2 things, the eradication of the Lyme bug from my system and the fact that the Lyme treatment is an old fashioned treatment for arthritis. A classic case of killing two birds with one stone, or in this case two illnesses with the same treatment. Which is why the arthritis and psoriasis have returned to fight another day but the Lyme symptoms have not. My previous diagnosis of Rheumatoid Arthritis was similar but he felt only part of the picture.

He wrote me 3 prescriptions there and then and I had 4 x-rays, some blood taken and have to have a full bone scan and a MRI of my hands. 'About the only two tests you don't appear to have had already,' he joked. After the scans I can take some of the heavy duty stuff he has prescribed but for now I have pain killers which work (makes a change) and some weird cream made from chili peppers which magic the pain away in minutes. I have to be careful where I put that stuff though!

He smiled, was gentle and caring. I liked him, I trusted him, even more so when he said he has relatives with the same complaint. His aim is for me to be pain free in the long term and significantly better in a couple of months. After all he said you've seen enough people who had missed it, it's about time I had some treatment.

So once again I have been failed by the NHS and their cost cutting, time saving piece meal approach to patient care. When someone took the trouble to view me holistically and look at all the information instead of a tiny part the answer was staring him in the face and probably had been for 40 years.

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?

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.

Psychiatrists play God - Again.

Cartoon unashamedly pinched from Dr Speedy's Nice Blog

NHS Blogdoctor is on the case again, this time railing against the influence Psychiatrists have on the NHS in a post with a wider theme, that of the Rise of the Healthcare Professionals.

This quote from the Times yesterday (26.06.08) particularly took my eye:

People suffering from mental illness are frequently being misdiagnosed or receiving inadequate treatment, according to a group of leading psychiatrists. The doctors say that patients with serious problems are often referred to psychologists and social workers rather than clinicians and do not receive the medical therapies they need.

“If a GP suspected a patient had cancer, he wouldn't dream of referring him to anybody other than a cancer specialist. A cancer patient might need jollying along, but what he really needs is the correct diagnosis and treatment. That's what he gets from a specialist. But patients with mental illness are not automatically referred to psychiatrists. If they only see a social worker, there's every chance that mental illness, or underlying physical illness, will be missed. Patients are getting a bum deal.” (Professor Nick Craddock)

Now substitute the words 'mental illness' with ME. See what I mean? Looks like now the psychiatrists are too busy treating people with ME, which of course as we all know is 'all in the mind', to be bothered to treat their own patients.

Two week rule part 2

WH got his appointment through yesterday for his urgent test. 24th June. You will recall his GP referred him under the Two Week Rule as his symptoms were consistent with a possible cancer. This will be 45 days since he presented with those symptoms.

This is the NHS's own statement on the subject, taken from their document 'Choose and book: implementation guidance for urgent referrals for suspected cancer two week waits'

2.1 The two week wait standard
The two week wait (2WW) standard for all
cancers was introduced in 2000 and guarantees
that everyone with suspected cancer referred
urgently by their GP will be able to see a
specialist within two weeks. It is an important
milestone to achieving the 62-day target from
urgent referral for suspected cancer to first
definitive treatment, set in the NHS Cancer Plan.
Compliance with the 2WW standard has been
achieved for some time, and Trusts are now
focusing on consistent delivery of the 62-day
standard.
(my italics)

Oh no, not in this area seemingly. The NHS has done us proud once again. WH now has to wait another 4 weeks until he has this test, with all the attendant problems, worry, lack of efficient pain medication, lack of sleep etc etc. Once again the patient is the last consideration.

I don't think Alan Johnson would be looking so smug if that were him.

Two week rule, don't make me laugh, I'm already crying

The NHS apparently has a two week rule that means that if you present to your GP with some new, serious, possibly cancer-related symptom, you get tested and see an 'expert' within 2 weeks. 3 weeks ago WH did just that. Although the GP thought there was a slight chance of it being related to medications he is taking, nevertheless he was referred immediately for an endoscopy to have his gut checked out and stopped from taking any of his regular medication.

Seeing another doctor in the practice last week about another maybe-related-symtom and being in excrucuiating pain with the lack of pain relief, this guy also expressed surprise that the endoscopy had not been carried out. He promised to chase it urgently. On Monday two phone calls from different practice nurses had WH rushing to the surgery for a consult about yet another new medication. Again the GP was astonished that the endoscopy had still not been carried out and said she would chase it immediately. Now 3 days later WH still hasn't heard anything, and still can't take any arthritis medication which is leaving him is severe pain and unable to sleep at night.

I know the NHS is strapped for cash and I know that many doctors are unconvinced that this system is any good but does anyone consider the poor old patient? We go on holiday in 8 days, a holiday planned specifically for WH's enjoyment. WH has been told he has a potentially serious condition and needs an urgent test. He hasn't had the urgent test, can't take his usual meds so is feeling 10 times worse than usual and there is no apparent end in sight. The prospect of a holiday with 10 other people whilst feeling in this state is not appealing to him, never mind the worry of 'What ifs'.

Once again the NHS has caused this family no end of grief and is threatening to ruin our holiday of a lifetime.

The end of the Lyme

A couple of weeks ago I took myself off to see my Lovely Lyme Doc (LLD) in another part of the country. Alone. This in itself was a novelty, it was to be the furthest I have driven alone for 15 months. I took it slowly, arrived in time to have lunch in a wonderful cafe nearby and stock up at the Indian food shop around the corner. Thus fortified I sallied forth into the consulting rooms.

Apart from having a slight performance removing my clumpy, ankle-high walking boots, the consultation went very well. So well I had to stop and pinch myself afterwards to make sure I wasn't dreaming, and celebrate in style with the worst plate of supermarket fish and chips I had ever eaten. That brought me back to reality.

In a nutshell I am improving, vastly and quickly now too, every day brings some new realisation or surge of energy. A greater improvement than the LLD had dared hope and certainly better than I had ever dreamed about. I'm losing weight too, freed as I am of some of the medications that have coaxed me into life the last 16 years, and which I KNEW were causing me to gain and then retain weight. The end is beginning to be in sight. I remain on the treatment until May, when the sun and our family holiday in Corfu will pose problems anyway. This time it will be different however, I won't re-start unless I start to experience severe symptoms again, in which case I'll be racing back to LLD and begging for more antibiotics.

How long this break will be is unknown, it could be weeks or even months before those little hidden bugs come creeping out of their hiding places and make their presence felt. The worst case scenario is that after 4 weeks I will be sick again as I was after last year's holiday, the best case is that I remain well indefinitely, in which case we will know that all those horrid spirochetes have been zapped into oblivion.

Some of the symptoms will never completely go; WH asked LLD last visit what the prognosis was and was told a 95% recovery was possible in theory. This passage from Todors Online Journal of Bacteriology explains why:

Several antibiotics are effective in the treatment of Lyme disease. The present
drug of choice is doxycycline, a semisynthetic derivative of tetracycline. Even
patients who are treated in later stages of the disease respond well to
antibiotics. In a few patients who are treated for Lyme disease, symptoms of
persisting infection may continue or recur, making additional antibiotic
treatment necessary. Varying degrees of permanent damage to joints or the
nervous system can develop in patients with late chronic Lyme disease. Typically
these are patients in whom Lyme disease was unrecognized in the early stages or
for whom the initial treatment was unsuccessful.

My GP remains supportive even though she is not allowed to prescribe my treatment on the NHS. Odd really, as she can see that I am so much better than I was 12 months ago. Thank goodness I found out the real cause of my illness when I did. The state I was in last year leads to me think that by now I might not have been around.

Who cares about the odd 5%? You've got to agree, 95% of life is a much better prognosis than none at all.

Back on the case

Some extremely good news for the new year, Dr Crippen is alive and well and posting again. After rumours of his demise and a spoof obituary, John Crippen has surfaced again after his unscheduled autumn break and I for one am extremely pleased about it. His diagnosis of the NHS is spot on and the points he raises are the concerns of all of us, not just the chronically sick like me. As I have said countless times before, the NHS has done very little to help me over the last 16 years and my recovery and treatment are entirely due to the private sector.

I look forward to new ideas and ever more anger from the good doctor, it really is great to see him back.

The NHS strikes again

More and more this blog this turning into a rant against the NHS. I do give them a chance, honestly, but the more things that happen to me the more I seem to be turning into Dr Rant or NHS Blogdoctor, minus the medical degree of course.

This latest episode with my right foot has proved once again that GP's don't spend enough time with their patients to form a proper diagnosis and more importantly if you suffer from unfashionable ilnesses or diagnoses like I do, ME, Fibromyalgia, Lyme disease and a weight gain resulting from inappropriate medications, they don't always want to listen. It's the good old heart-sink trap again. But like the famous boy who cried wolf, sometimes heart-sink patients do actually have something wrong with them apart from the never ending list on the practice computer screen.

I was lucky yesterday. I saw a locum GP who was lovely, had no preconceived ideas about me and actually examined the foot in question for the first time in 9 weeks rather than casually glancing from the side. She left the room momentarily to fetch a nurse and we heard her say "Well she definitely has something in there, it's quite obvious, it must have been there for weeks". An hour later I had had 3 pieces of wood removed from my heel.

So why did it take 4 GP visits over 9 weeks with 3 different doctors to finally extract what was painful for me and clearly very obvious to the locum. In all this time I have been told to keep up my excercise levels (How, precisely, on one foot?), take some painkillers, ignore it and walk on it properly.

The locum sent me to A&E for a soft tissue Xray and then the balloon went up. The Xray was abnormal. Surprise surprise. I explained it was calcification due to Lyme Disease so some very old plates were found and a lot of old notes and they finally agreed that that was not the cause this time. I have strong antibiotics now for a week after which I have to return the A&E to get checked over by an orthopaedic surgeon if if the heel is not completely better. At least someone has finally taken notice.

The examination I had from the locum under a strong light was very different from the perfunctory look I was given initially. It took maybe 5 minutes longer. If this had been done in the first place, 4 appointments would have been saved and the trip to A&E and the 4 hour wait.

And the NHS is trying to save money. What a joke.

Not my left foot part 2

Well for 8 weeks I have been struggling on my right foot in various degrees of pain, ranging from mild to absolute agony, where I have been unable to put any weight on it at all. The GP decided weeks ago that it was another bout of fasciitis which I had in 1995 and has been treating me with anti-inflammatories. I however have not been convinced.

Last night I was proved correct. The side of my foot literally burst open and an abcess was revealed.

I am waiting for the surgery to open now so I can get it looked at properly. Maybe it will start to heal now and I will be able to walk again.

What a waste

When I first saw you, you presented with the highest number of Lyme symptoms I have ever seen in one person. You were really very, very ill. I can not believe that your regular GP missed it. Especially as you had the EM rash and a defined onset.

No, not a dream but the words of my wonderful consultant yesterday.

I was also told that I would never have 100% cast iron test results and in any case they were not that useful per se anyway and it was probably a waste of money testing for all sorts of things when all the clinical signs were there in such a massive number. And yet every other medic I have consulted over the last miserable, bloody, frustrating 16 years had missed them, ALL. A point not lost on me, WH and the consultant.

The medics who asked if I was really that bad, the medics who thought I was hysterical, the pain specialist who said "Well of course a lot of these symptoms are not proved to exist anyway", the medics who said "You'll just have to work through it", the medics who said "Try exercise", the medics whose faces fell when I walked into their surgery, the medics who said "Get out more," the medics who told WH to let me get on with it, the medics who said "really it's not that bad" the medics who said "Here take these antidepressants, you'll feel much better," the medics who told me to get a life.

I only wish.

This revelation seems to have really affected me. I know I was told before that Lyme was 99% likely and then the treatment started working so it looked as though the diagnosis WAS right, but never before had it been said in so many words, so definitely,categorically: "This is what you have got and have always had, since 1991."

So today I am still weepy and feel like I have wasted 16 years of my life but at least the end is in real sight now, it's not just a maybe. And also the realisation that all these odd things were not just me being awkward/attentionseeking/lazy they were a REAL illness.

And how many more people are there out there like me?

ETA Whats with the colour?? Blogger misbehaving again, at least it beats my dashboard coming up in German which was last week's surprise.

Life insurance medical

I saw my GP yesterday for a medical for my life insurance. I thought it was just me and my poor medical history that required it but I was told that they do it all the time now.

Anyway interesting reading going through my medical notes for the last 20 years and before, and an invaluable exercise for my GP too, as I have only actually been seeing this one for 9 months.

Things I found out:

I have been complaining about my hands for over 10 years.

My then GP in 1997 queried RA but never did anything about it.

They had me down as depressed, but when the GP dug into it, it was just a comment after I had 2 bereavements in the same year, 11 years ago. The diagnosis was removed from my long list of current problems

Another GP had frequently put 'unexplained weight gain' and never followed it up.

That same GP had documented my aversion to Amytriptiline and my refusal to take it on the grounds of weight gain but never tied the two things up.

My heart problems started immediately after I had Parvo virus as did the RA but it was never 'joined up'. The GP put that right too yesterday and said in the report that I had had both things as direct result of the Parvo virus, it being a well documented progression in adults.

If all this had been sorted out at the time I probably wouldn't have remained with the ME diagnosis and other problems I had would have been investigated more.

The GP concluded the report by saying that as conventional treatments had failed to have much effect I was now seeing my Lyme specialist and getting much better on this regime, giving credibility to the 'probable Chronic Lyme' diagnosis.

Interesting isn't it? When someone actually bothers to review all your notes not just the current appointment stuff.

I thought that this government was all in favour of 'Joined-up Thinking', pity it doesn't extend to Ms Hewitt's departments. Or then again it's really no surprise is it?

New house, new car, new baby?

We got the keys of the door on Monday. I bought a new (second hand) car on Wednesday. On Friday we are still awaiting the appearance of the 4th grandchild.

All week my stepdaughter has presented at her local maternity unit at 9am each morning to be induced. They have tried 5 times. Today she is 16 days overdue and is scheduled for a ceasarian this morning. To date they have had no beds. I hope to God they have one for her today.

She has gestational diabetes and group B strep. She was told she would not be allowed to go more than 7 days overdue as there was a risk she would have a very big baby. She was also told it would be 'out by Wednesday' - last Wednesday. She was told she would have a ceasarian last week. She was told she could not go more than 14 days overdue as it was dangerous. All conflicting and all disregarded as the time went on.

Now my anxious, depressed step-daughter, longing for her first baby, has been living on tenterhooks since last Thursday. Her partner has lost a week from work running backwards and forwards to the hospital each day.

Is this what the NHS calls primary care? Primary nightmare more like.

Read NHS Blog doctor on the subject of maternity care here

Lyme disease week 15

I've been on high level antibiotics (Doxycycline) now for 15 weeks. I'm doing OK, my activity level is 50% of what it was when I was well, ie 15 years ago. It is about 500% higher than when I was at my worst last autumn. I've had a few problems with the dreaded fungal attack but with a judicious dose of Diflucan once a week and by taking high dose probiotics I now have it all under control. The worst aspect is my high susceptibility to sunburn which is a small price to pay for such a brilliant recovery. This week it's no bother at all, having had wall to wall rain for the last 10 days (ever since my visitors arrived!)

I see Dr Thomas Stuttaford in The Times yesterday was writing about the perils of Lyme which seems to have become headline news over the last few weeks. One of the points he makes is this: if left untreated, about 60 per cent of patients who have had Lyme disease develop severe arthritis. Well stone the crows, my Rheumatoid Arthritis isn't rheumatoid after all. Actually we had already decided that. Despite the fact I am taking absolutely no medication whatsoever for Arthritis, it is going, I can move, the swelling is going and best of all the hard lumps which I had on the palms of my hands and the soles of my feet have gone. Completely. Bloods taken last week revealed, as the nurse reading them out to me said " better results than you have had for about 20 years". Markers for infection and arthritis were almost normal.

Now for the sting in the tail. A consultation with my GP last week made clear that although I was recovering better than anyone had hoped, the practice partners had had a meeting and confirmed their earlier decision not to prescribe any more of the antibiotics as they are "off licence". I must get them via a private prescription from my private consultant, for which of course, I must pay.

OK, I have posted on this topic before, but that was before I had definite proof that the treatment is really working.

You know what, NICE sucks and so does the NHS. I have been unable to work for 15 years, I finally have a treatment that is working but hey, as if I am not disadvantaged enough already, I have to pay for it myself. No matter that 2 years of NHS time and money was wasted trying to find an arthritis medication to which I was not allergic and pain relief for a condition I didn't have.

Dr Wonderful

I saw my Lyme doctor yesterday. He is very pleased with my progress and more to the point so am I and so is WH. Daily I can feel the layers peeling away and I am becoming almost human again. Eleven weeks of the antibiotic therapy is beggining to give some lasting benefit. I'm trying for another 12 weeks by which time I should be part way there.

Two things conspire to scupper my progress, the first is inbuilt, I am reacting to the sun big-time. I have to keep out of it and, for a died in the wool sunworshipper and lover of the great outdoors, this is hard. I wear factor 50 all the time but even so, a short drive to our nearest shops (6 miles) gave me a substantial burn on my right hand. Dr Wonderful suggests that on my forthcoming trip to Greece I stop the meds a few days before-hand to get the drug out of my system and don't take it for the duration of the trip. If this works I will be really over the moon.

The second blur on the horizon is the very real possibilty that my GP practice will not now prescribe me any more antibiotics beacuse they are 'off licence' in this treatment. It won't stop me taking them, however, as I shall obtain a private presciption and get the drugs elsewhere. It does beg the question though, which I have posed here before, would the NHS prefer for me to remain ill rather than stump up the cost of the drugs which are making a real improvement to my health for the first time in 15 years?

Aren't our service industries wonderful?

I had a summons yesterday morning because BT said I had not paid mother's last phone bill.

The bill was dated 4th April, I paid it on 10th April and the summons was dated 16th April. I was so mad and I getting very angry on the phone and I KNOW it wasn't that girl's fault so I just had to put the phone down.

When Mother died I called up and told them. I was told that I would have to transfer it into my name if I wanted to keep the line temporarily, which I did. I didn't get a bill at all, so on 4th April I phoned them and they said one had been issued but I had obviously not received it. It must have been lost in the post. I decided there and then to have it cut off as we were not doing all the trips up there that we anticipated and anyway we had now sold the flat. The girl said she would reissue the old bill then cut off the phone then a new bill would come which would be less than the first so not to pay that, just pay the final one which I did and of course she was right because it was £26 less than the first bill.

Then I get this summons for non-payment of £32. I went ballistic. WH handed me the phone and found my cheque book whilst I was dialling the accounts department. First off they said "Oh it's a new account and because you didn't pay your first bill they summons you immediately. "

What within 12 days? (or actually 6 working days)

When I said about it having been mother's phone I was then told "Oh you shouldn't have changed the name on the account because if it's a deceased account they give you 3 months to pay."

Hey? I did that because BT told me to.

Then they said "Yes but it doesn't alter the fact you had not paid the first bill on the account," so I reminded the BT person that I called up in the first place because I didn't get one.

"Oh well that's due to the Post Office, not BT. You will have to complain to them"

Looking on my calendar there were 6 working days between the date of the final bill and the date of the summons, Easter was in the centre which reduced tham a bit. The bill arrived on Fri 6th because they only send them out second class and I paid on Tues 10th in my bank, the very next working day. Can't see how I could have done it any quicker. That apparently was not acceptable. Yet when I eventually move house I have to give them at least 5 working days to move my phone line.

It then took a further week or 5 working days to go through BT's computer system and did not show up as a payment until 17th the day after the summons. Interesting the summons itself took 4 days to reach me, second class post of course. If BT are so hung up on short time scale maybe they should use a faster delivery service themselves.

I then pointed out that my other (home) BT account is paid by standing order and is £80+ in credit as their monthly payment scheme does not allow me to make a smaller payment and I only actually pay for the line rental and get cheaper calls elsewhere. I was told "Oh we don't check your other accounts even if they are the same address."

So actually BT still owe me money, and I am wondering what on earth this country is coming to and how many other people have fallen foul of ridiculous situations like this.

First the NHS is taking it's last dying gasps now our (once) national telephone service has gone the same way.