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.

Some good things happened this week

1. I had a lovely card for Mother's Day from youngest step-daughter. That will be the 18th year running I got something from her. Usually hand made but sometimes like this one a really lovely 'bought' one with lovely words.

2. Took Grandaughter aged 4 into the village shop and she was asked what she had been doing at Play School. 'Oh I don't go there any more' she said 'I've got the Chicky Spots' and proceded to pull up her jumper to show everyone.

3. The first flowers are out on my Akebia. Spring is definitely just around the corner even though we had a blizzard on Monday, for 10 minutes.

4. Went to the dentist and for the first time ever, I didn't have to have anything done. The Lyme treatment has improved my horrid teeth too.

5. The dentist thought I looked a lot fitter too and said so.

6. Was promised some (free) tickets for Chelsea Flower Show again from one of our suppliers. Thank You so much.

7. I have now lost almost 2 stones in weight since mid-December. My GP prefers kgs but somehow I know where I am with pounds and stones. Either way it's good.

So nice to see you

I paid a visit to my Rheumatologist on Wednesday. This was a twelve week follow up from my last appointment in December, (no, I couldn't get the maths to add up either) postponed a further month by the hospital for one of 3 possible reasons, which one they did not specify.

First of all they have changed the waiting area, you check in one area and then are directed to sit in one of five jump seats along a narrow corridor facing a brick wall. This doubles as the chiropody area too so we were treated to a long monologue by an an elderly lady in a wheelchair parked at right angles so the corridor was not blocked. She talked of neighbours long dead,businesses lost and a full rundown of all her relatives faults. No actually she didn't talk she barked, droned and berated, monotonously for hours, or so it seemed. After a few minutes I approached by a nurse and told that I was 'next but one' but there would be a slight wait. The chap on the end groaned. He was the 'next'. He told me his appointment was some 75 minutes earlier. We sat and stewed on a boiling hot day in a corridor with no air. Eventually 'next' was called.

Two other couples then arrived all at once, names were taken and the nurse told me not long to go now, but it could have been worse, the previous two patients hadn't turned up. We all changed seats so the couples could sit together. the nurse came and suggested these late arrivals could go and sit in the coffee shop and she would fetch them. Luckily I had my bottle of water to sustain me. The elderly lady was taken to chiropody, the chap before me came out.

Some twenty minutes later another nurse asked if I had been forgotten. She disappeared, then came back and said "Doctor is reviewing your notes, you''ll be in soon. " Another ten minutes passed. Finally, one hour and forty minutes after my allotted time I was called in.

The consultant beamed, "I haven't seen you for a while have I?"

Er No. I had a locum last time and and the time before that and the last one was horrid. She mentioned his notes. I told her I did not like him. "He's from New Zealand," was the reply, "but he did put you on Methotrexate ." (Only after I had had specifically asked for another treatment when he had tried to end the consultation).

We discussed my diagnosis of Chronic Lyme. "How are you now? " I told her I was better than I had been for 10 years, was responding to the treatment, had good blood test results, all my 'lumps' had disappeared from the palms of my hands and other than the fact my hands are still curling up at night, I was heaps better. I asked whether or not I should see someone for the tendons in my hands which have been noticed by everyone I have seen for the last few years. They are thickened, painful and very stiff in the mornings causing this propensity for my hands to curl up.

"Can you make a fist?"

"Well yes, that's the problem, too much fist", she pushed my wrists up and down and cast a cursory glance at the back and front of my hands.

"OK then, you don't need to see anyone, you can move your fingers." Eh???

I demonstrated my ability to bend over, stretch up, put my arms above my head and behind my back.

"I am concerned that this private doctor is charging you too much. How much do you pay?" I named a figure I knew was about one quarter of her consultation fee as WH has seen her privately in the past. "Oh that's not too bad then." Not too bad, it more like a brilliant bargain. This chap is obviously not in it for the money. "What about the private prescriptions?" I didn't tell her I had stockpiled from the NHS prescriptions and would only need a few. I again named a ridiculously low figure. " You're quite happy then?"

Almost deliriously so I told her. I had found a doctor who believed me, a treatment that works and after 15 years I am improving ,albeit slowly and probably not completely. I am doing more, I had spent the previous morning gardening, I could go out more and what is more I have the stamina not to crash completely afterwards.

"Well we will have to agree to differ then. Your treatment is unusual and not at all main stream. It is very controversial; there are a lot of opponents both here and in the USA" The words left unsaid told me that she was one of them. I already knew that.

"I don't think there is any need to see me again until you want further hep from me. So nice to see you again."

The consultation was over. Why on earth did I bother going?

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.