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?

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.

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.