Tidal wave

Well it's been quite an eventful week one way or another but not stuff I really want to write about just now. I have been upping the Samento and Banderol though. After I could tolerate 10 drops each time for a couple of days, I started increasing the dose exponentially so I'm now up to 25 drops of each in the morning and 10 drops at night with no extra effect. I am starting to see little improvement too, certainly a lot of the brain fog is lifting and I have slightly more energy.

Tomorrow in London is the PHE Conference on Lyme disease. What started out looking like a seemingly boring presentation of the same old same old in relation to the new Lyme unit being set up in Hampshire, now begins to look slightly more promising with the input of Lady Mar, the LDA and real live patients. I wish I could have gone but it is just too far and too expensive by public transport and driving on my own out of the question.  Several people from a group I belong to are going so I'm looking forward to their reports afterwards. PHE have promised some transcripts and videos afterwards but I admit I'm sceptical of some of their answers to questions about these provisions put to them in advance.

With various other pieces of research coming to light now and the recent statement regarding Lyme Disease and services in the HPA (Health Protection Agency) we can begin to see a tiny chink of light at the end of a very long tunnel. The tide is starting to turn for Lyme disease but I dont expect it to be even half way in in  my lifetime.

Herxing like Hell

Been back on the good old Samento and Banderol (herbal antibiotics) for a week now. I've got up to 5 drops a day of each and I'm permanently nauseous. The treatment protocol suggested by Dr Marty Ross a leading authority in Lyme treatment suggests starting at 10 drops of each TWICE a day and I can't even tolerate one quarter of this.  Presumably all this is a giant herx which rather points to there being a lot of Borrelia coursing round my system again.

I've started now as I have 5 weeks between craft shows so I don't have to work outside the house, however I would like to do some work indoors, out of the last 7 days I have achieved the equivalent about 2 days, not good. The rest of the time I am laid low with a permanent headache, fever, nausea, a rash, muscle pain and palpitations. Not good.

I'm going to persevere though as I'm sure if I can zap a few more of those pesky spirochaetes my overall health should improve and maybe my legs will start to work normally again. At the moment they are firmly switched off, the brain is willing but it's like the power supply just died. I've got an appointment with the NHS rheumatologist in a couple of weeks, wonder what he will have to say about the old legs.  Usually its  a case of 'oh well try and get some exercise,' he hasn't quite grasped that I am trying and I fail every time! Maybe I should start talking nerve damage and see what he suggests then. Meanwhile I'm just hoping I have the oomph to actually get to the appointment.

So much to do, so little time

It's been hectic round here, mainly because loads of things in the house are now taking shape. By this weekend we will have heating. That will be very welcome. We might also (weather permitting) have a finished patio and garden wall so no longer will we be trailing tons of red sand through the house. Tonight the electrician is coming to fit the fire alarms too, nice not have to look at the bare wires which have been poking through the ceilings for about 8 months now.

Our trip to the Lovely Lyme Doc last week was good. We took the Depressed Painter and he spent the afternoon taking photos of the town centre whist we sat in the consulting rooms. I have been 'discharged' as far as Lyme goes. No more treatment. I just have to get the RA sorted now. It looks like I am stuck with that but then it does run in my family so it may not be Lyme related at all though we suspect the Lyme triggered it.

WH was not so fortunate, he most probably has been bitten at some stage as he has a number of systemic problems which so far the NHS has not addressed or investigated the cause of. He has only ever been treated for the symptoms. (Sound familiar?) So in a weeks time he starts the antibiotic treatment to see if it makes a difference. He's doing it for 3 or 4 months to see what happens. He can't lose anything and he may well gain a lot. Watch this space.

Last week too WH had the dreaded shoulder decompression which so far has been relatively pain free although stopping him from over-using his right arm is more problematic. The only real downside is his depression is worse, he's totally lethargic 50% of the time and very agressive the rest. Even the Grandkids yesterday, playing I-Spy in the car, suggested 'MD' for Miserable Granddad. I seem to be referee most of time in the constant battle between WH and the rest of the world.

Me? I just keep smiling, doing far too much and trying to be 'infant teacher' bright and jolly at all times. Only when I sit here at the desk letting my mind wander do I let my my pasted-on grin slip and wonder if it is all worth 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?

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.

Reality check - pinch me if I'm dreaming

We finally cleared the new house of tools and rubbish last night prior to the carpet fitter arriving this morning. We now have painted bedrooms, all the light fittings and curtain rails. I am just about to load my car with all the stuff I need to clean windows, wipe down doors and paintwork and hang curtains. After 16 months it barely seems real. My stallwort friend and lifesaver T is arriving later to help. What I would have done this last twelve months without her support I do not know. OK she started as the 'hired help' but as in all the best stories she's now a part of the family and a great friend to boot.

My other 'dream' scenario is my energy level. Over the weekend I moved a lot of bricks and some builders sand which I was sick of seeing. Since then I have cleaned as though my life depended on it. I keep waiting for the crash and it doesn't come. Even 6 months ago I could not have done all this, so now I am testing myself daily to see how much more I can do. The results are amazing not just me but everyone around. For this I have to thank my Lovely Lyme Doc and his faith in my treatment.

And just to put the icing on the cake of this upbeat post, the nightingale has arrived and is singing not 20 metres from my window. What a joy.

Braindead

I don't have the brain power right now for a lengthy post, suffice to say I am probably busier than I have been for the entire last twenty years. Last weekend I was at a marathon festival locally, it didn't rain and the weather was almost pleasant. It could have done with being a tad warmer but otherwise it was OK. Now I have the clearing up, a house which looks like a bomb site and WH's dreaded VAT to do. We *might* be actually moving house shortly too. Now there's a thing. More news on this later. Tomorrow we will have owned our second house a whole twelve months, it would be nice to live in it sometime.

All this and I am actually feeling reasonably well. Tired maybe but not that desperate bone crushing, nerve tingling, fiery pain I had for so long. I've been off my treatment for almost 3 months now and things are definitely looking up. I'm well on my way to a 3 stone weight loss too, necessitating some serious clothes shopping. My new hobby perhaps, but right now I just don't have the time.

If I could just slow down I might come to appreciate that feeling of doing stuff, wells loads of stuff really, and afterwards feeling, well, OK. It's taken me almost 16 years to achieve this and I want to savour every moment.

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.

The boys from Deer Lick Holler

Just one of over 100 pix that WH took at the Borderline in London on Monday night where we went to see our fave band Hayseed Dixie on the second leg of their European tour 2008; they had played in Reykjavik the night before. It was a great night with a party like atmosphere, helped along by the shots of Jack Daniels the band provided us all with. Ostensibly it the was the press launch for the new album, but 150 dedicated fans didn't need a press presence to have a great time dancing and singing along with the old favourites. Too bad a lot of the press failed to show, we drank their JDs for them. Additionally, as the album had only been out 7 days we hadn't really had time to get word perfect by then; fuelled by JD, no-one noticed.

WH and I had spent the day trawling the shops around Oxford St and trying to resist the temptation of buying anything so we didn't have to carry it. By 5pm we had had enough and went to meet other Hayseed fans for a barbecue at Bodeans. Meal over, we trecked to the Intrepid Fox to met yet more fans and then hot foot it to the Borderline just around the corner. The evening continued in similar breakneck fashion culminating in a train ride back to our hotel in Slough at almost 2am, following an extremely decadent Greek kebab an hour before on Oxford Circus.

I am now paying for all this activity, aching in places I didn't know I could but strangely I haven't had the crash which would inevitably follow such behaviour over the last 16 years. I hesitate to say it but if I don't crash then I will KNOW I am on the mend.

Now I look forward to seeing the guys in Exeter in March. This morning I even talked our kitchen supplier into going too, another new recruit to the tie-dye and dungaree army.

Oh No it's the big O

WH has a birthday with a zero on Friday, we are celebrating on Saturday and a HUGE surprise will be revealed for the Birthday Boy. Can't say any more yet but it will be great. I'm so excited.

In other directions, I am so busy I don't know where to turn, trying to sell this house, tidy up, do the garden, sort the new house out, sort the business out and organise a monster party and THE surprise.

I saw my Lovely Lyme Doc last week and he is amazed with my progress, I am definitely 50% back to normal, maybe more on a good day. 3 more months of treatment and then I can stop for a while to see if the symptoms return or not. Met with a friend yesterday whom I had not seen for 6 months and she was stunned. This keeps happening a lot now, it's really odd, it takes a while for me to get used to the new improved version, let alone anyone else.

To celebrate both events we are off to the British Press Launch of the new Hayseed Dixie album in London next Monday. If you get chance have a listen, it's brilliant and just like the title, No Covers, there is not a 'cover' in sight. Time to take these guys seriously, especially the writing talent of John Wheeler. It's a new direction for them and we'll be celebrating a new direction for us too.

Time to take stock

Haven't had much to write about recently. Life plods on through January and now we're into February and it's still cold, wet, windy and depressing. We're still waiting for the roofers to put the roof on the extension, every time they go to start some other bad weather prevents them. We are now about 2 months behind with the build and all because of the weather. This has had the effect of driving the costs up too, the scaffolding seems to have been up for months.

The other house has been on the market for 7 weeks and despite loads of advertising since new year, progress is slow. The agent tells me that this has been the slowest January over all for years. Just our luck. Newspaper reports of a recession, uncertainty with the banks and the fact that this area is one of the most expensive in the country all conspire to make it harder to sell. I am begining to despair of ever moving from here. I was annoyed that I was here all last summer, now it looks like I will be here for part of this one too.

WH has moved on to other work, he's been full time on our place since then end of October and now his customers just won't wait. Meanwhile, as we weather yet another storm thoughts turn to Greece and warm weather and to wondering if, after this project is finished, we sell both places and escape. For good.

The Lyme treatment is working, I'm losing weight too and I know I'm ever better in the warm. The thought of permanantly living in more comfortable temperatures is very appealing. It's certainly more than a passing idea.

Better do a bit more of the Greek language study then.

The Wilder Network

A big hug and thanks to Terri for sending me the link for this brilliant Lyme Disease site, The Wilder Network. I can see already that it's going to take me ages to read all the info on there but it looks most comprehensive. My lovely doctor trained with one of the main names on there so I'm in good company I guess.

It's essential reading for anyone who lives in an area where deer ticks are prevalent. As you can see from the image they're not that big but boy do they cause some trouble if undetected. Get reading folks.

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.

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.

Six things I have done in the last few days

Just to prove I am actually doing something........

1. Made a jar of preserved lemons

2. Seen Hayseed Dixie in Bristol. Wow, best gig ever.

3. Turned another year older.

4. Driven for hours collecting building materials.

5. Received the biggest display of flowers I have ever seen. They are still filling the living room and scenting the whole house.

6. Started on the demon steroids yet again, only this time I am losing weight, not gaining it.

Back soon with more stunning highlights!!

The disappointment continues

Well the gig of the year was a wash-out, personally speaking. First off, the motorway was closed so we had a long detour via Wales. This meant that we were an hour late for lunch with the other Outhousers. Nevertheless we had a great time and a great lunch with lovely people. So far so good.

Later we left the hotel in brilliant sunshine, got to the Gig in a bit of cloud, saw the first two groups and by then it started to rain. And rain. And rain. Halfway through Hayseed Dixie we had to leave. By then my muscles were shaking and I could barely move. Our clothes were dripping wet and we could wring out the water.

One hour later we were dried off and sitting in warm clothes in the local Tandoori! Three days later I am still suffering the effects of getting so wet and sitting in pools of water for an hour, cold water and neurological Lyme do NOT mix. We didn't even get to see Status Quo, the headline group at all.

I thought that if I got my op date on Monday that would cheer me up. Last Friday I was told I could have it as soon as possible, by Monday that date was mid October. The surgeon didn't think to tell me he was on holiday for the WHOLE of September.

So I'm still waiting.

To alleviate the boredom I've booked to see the Hayseeds again in Bristol on 23rd September, indoors. This time it had better be good!

NOT My Left Foot

After a day when I have to all intents and purposes become a builder's supply delivery driver, I finally got home at 4.45 only to have to rush out again to a doctor's appointment in order to find out what ails my right foot. My request for a nurse appointment to 'just have a quick look' was met with dogged insistence that I attend the branch surgery 8 miles away to have a doctor examine it immediately.

Turns out the nurse was right, I have an infection in my sole, most probably I stood on a splinter or something and it started that way. Not that I remember doing anything like that, but a definite possibility as the house project resembles a building site more than anything else these days. So more antibiotics and a ten minute explanation when I told him that I already take them 'off licence' for Lyme Disease. And then that light-bulb moment on the doc's face as he realised that I was 'the one' they had had to have a partner's discussion about, whether to prescribe for me or not. (Answer = NOT)

I have however been prescribed the impossible this time. I have to keep off my feet for 3-4 days. Easier said than done in my new (but temporary) career. I can drive without my left foot at a pinch (in an automatic) but not my right. Solve that one doctor.

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?

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?

Compare and Contrast

I know I know, no post for a week then two on the same day but I am celebrating.

Just compare this post written last November and my other post today. What is the difference?

I'll tell you what.

I have a diagnosis after 15 years. I am not a basket case, I have a bacterial infection. That infection is the causative agent of Lyme disease. Most importantly I am having treatment. After 11 weeks treatment I feel wonderful, I can function more than I have been able for about 10 years. Yes I know I have wasted 15 whole years of my entire life, a whopping 29% of it. But now I have hope, recovery and and best of all some normal life.

The disturbing thing is that none of this improvement is down to our wonderful NHS. I found the cause myself (after I recognised a picture of the Lyme rash as one which I had had). I was advised by the Eurolyme website and I found a private doctor who had the training and the skill and most importantly the interest to want to treat me. In 15 years all the NHS wanted to do was either ignore me, send me to a psychiatrist or give me unproved, dangerous, half-baked quack remedies. No-one wanted to treat me as a whole person with one illness.

Even now I have a treatment I will have to pay for it myself shortly via private prescriptions. My GP practice said that they will no longer be able to provide prescriptions for such a 'controversial' treatment as it is 'off-guideline' and unproven. OK , so they would rather I stay ill then? Even though my private doctor is in full contact with my NHS ones the NHS ones choose to disregard his expertise and go their own way. Even my NHS arthritis consultant has written to my GP (after being informed, out of courtesy, that my medications had changed and that I had a new diagnosis) and stated that I should stop this new treatment immediately. Why? because I am getting better?

I am now in total dispair at the state of the NHS. It seems the powers that be would rather follow regulations than provide what actually works and they also seem to want to keep people sick for long periods rather than in the first instance test them for their condition and secondly treat them when they do get the results.

I find I am in increasing agreement with John Crippen, the NHS Blogdoctor. I was never politically minded as a youngster, I was always too busy on other things. This life of mine has taught me otherwise, after all, I have had 15 years to think about it.

The whole situation in this country with regards to ME and Lyme disease is a shambles. It appears that there are dark forces at work keeping patients with these illnesses in thrall to the pyschiatrists. Far be it from me to speculate further here, but a quick of review of some of my sidelinks will give you food for thought enough to keep you reading for a twelve-month.

Just ponder this, how much money would have been saved if I had not been on benefits for 15 years and instead had a full range of tests and consulations followed by a course of treatment for up to 2 years. Now of course my condition is chronic, harder to treat, has given me other associated disorders and I might not recover completely.

Now multiply that figure by the estimated 240,000 ME suffers in this country, let alone those with undisclosed Lyme. You can draw your own conclusions.