Wow!  Realised it had been a year since my last update!  So, without further ado <cue drumroll> here it is!

Well I tried.   But in about Feb/March I finally threw in the towel on the private treatment.  I was, in actual fact, starting to feel worse and also getting skin problems etc through the use of antibiotics for such a long time!  Thankfully those resolved once I stopped taking them.   Do I feel any better?  No.  Do I feel worse?  Well yes and no.  It is probably just a natural progression of the disease anyway but I have slowed down even more and had to move onto strong painkillers, Tramadol.  What?  OMG!  I hear you cry!  They are addictive.  Yes, yes, I knows that but....... do remember that one of my symptoms is a poor memory?  I am meant to take 6 - 8 of these per day in 3 - 4 separate doses?  I am lucky if I remember to take one dose and only take the second one because pain reminds me to!   So errmmm yeah.... I would not even make a good addict would I huh?

I am instead concentrating on making life as comfy as possible, doing what I can to feel as good as I can.   I appreciate the simple pleasures in life now.  To you, that might be smoking, going out for the occasional meal, taking regular holidays to nice places and drinking socially etc.  For me, my simple pleasures are things like watching the birds feeding, raising and releasing butterflies and keeping up with friends and happenings via the internet.  I am lucky in that I have a nice Macbook Pro laptop now so I can sit in a comfortable chair which reclines if I need it to, with the Mac on a table and all my stuff to hand like a drink (water or pop!) and stuff like moisturiser cream a pleasant spritz spray to freshen up with.   Last year we had a walk in shower put in instead of the bath as I was having difficulty getting in and out, so that made life easier.  Your favourite gadget may be an iPhone or  similar - mine is a machine to rest my feet on that sends electrical pulses through my feet to shift the fluid build up! :-D

I have actually come to terms with the fact now that a) I may never be diagnosed properly and b) I may never be cured.  A cure is very hard to find - some people may feel as though they have recovered but many find they relapse again later as unless every damn, sodding borrellia spirochete is ousted from your body, it WILL return!   This is a very insidious organism that invades every system of the body.  It bores into muscles, organs, bones etc and is known to retreat into cyst form to 'hide' when you try to treat it!   Believe me, if you got this, you would soon realise why you have to become your own expert on it because the medical profession just are not paying enough attention!  The info and research is out there, but it is being hidden and ignored.  Nobody wants to know and those who do, end up being hounded by the GMC or CDC (US) until they either quit or lose their license to practice!  I kid you not!  Conspiracy theory?  Yessums!  In spades!  Go look it up sometime.

According to the ill informed media and even less well informed medical body in America, IDSA, none of whose members are experienced in Lyme Disease though they think they are, this disease is 'hard to catch, easy to cure.'   I assure you that is the wrong way round!   Easy to catch and hard to cure is more like it as every well researched scientist who has studied it can tell you!

So no world.  I am not leaving you any time soon.  I am here to stay though it is a sobering thought that the second most common reason for a Lyme Disease sufferer (second to associated heart problems as the main reason) to meet an early death is suicide, usually through utter despair at lack of a cure, tired of the pain and limitations and their families and friends have either disappeared or given up on them.  I am very lucky to have a few supportive family members and loyal friends so no. :P  Shan't be going anywhere, at least not by my own hand!   Besides, I would miss too much!

As for quack cures.  Keep them!   I do not fall for flower remedies, herbal wonders or magical talking therapies.  Neither do my guys, the Lyme Disease bacteria.    They thumb their noses at such things!

So, there you go.  Another update!  Aren't you the lucky ones?!

Progress so far, such as it is

Have been on antibiotics now for nearly six months.  So, I hear the question being asked....Am I better now?   Depends what you term as 'better'.  Better in that because of the antibiotic (not your average run of the mill antibiotic either!) combined with an anti-rheumatic drug, I ache less.  Well, that's my 'better' if you like.
Am I cured?  No.  This is not flu, it's not a chest infection.  It is an invasive disease channeled by microbes that work their way into all your blood cells, vital organs, nerves, muscles, bones etc where it breeds and hides, often disguising itself against antibiotics in such a way that has even aroused the curiousity of germ warfare scientists around the world!  Regardless of what misinformed, poorly researched UK doctors try to claim, it won't be cured by a few weeks of antibiotics.   Those left still suffering from symptoms after being treated by the NHS (lucky them to even have it recognised!) are then told they have CFS, that convenient dustbin diagnosis so often used to end further investigation into why you really are ill!
Each month I also have a session on the Rife machine, a controversial treatment that is even outlawed in some states of America but hey!  What have I got to lose?  Besides, some people have had real success with it and as long as it does not harm me, well, gotta try!  Zapping the little microbes with electrical waves makes more sense to me than some of the alternative therapies people have suggested - not that I am knocking alternative medicine!  It has it's place but where such a stubborn, physical infection is concerned, I don't want to waste precious time on trying this, that and the other because someones uncles, best friends daughter found it worked etc.
In the meantime, I battle on, well aware that I am in it for the long haul, that I may never get 'cured' (Oh come on!  I am a realist!) but hoping all the time for some more improvement.

I am now on an antibiotic and an anti-rheumatic prescribed by my private doctor and have been on them for 3 weeks now.  I take the antibiotic for a week then stop it for a week then resume it for a week and take the anti-rheumatic every day.   One good thing I have noticed is that when I am taking the antibiotics as well as the anti-rheumatic, the constant pain I normally have in my bones completely disappears, which is rather nice as its a twisting, burning pain that is normally always with me.  But, when I rest from the antibiotics for a week, the pain soon comes back.  So, I deduce that combined, the two medications do  actually reduce my pain considerably which is a small improvement!  Does not mean I am getting cured though, it just means I get some respite from one of my many symptoms!  To me, that's a good thing! :) Ok so my energy level is still shite but, because I am not in pain so much, I feel 'better' than I have done for many months!
My heartfelt thanks to the NHS - NOT!  You lot have not helped me at all - you do not even acknowledge what it is I am really suffering from! <shakes head>  It is about time you guys and gals wised up!  People are suffering!

5 years on

I have now been ill for five years.  Swap you for your common colds, flus and tummy bugs any day?  There are over 100 studies showing that the borrellia spirochetes (LD bacteria) persist despite antibiotic treatment unless the disease is detected and treated very early.  Most of us remain misdiagnosed for many years so are being left to rot.  Alternative therapies may make us feel 'nice' but they are very unlikely to succeed against such an invasive, persistent infection. Likewise the many quack 'treatments' being touted by lay people and dubiously qualified 'health professionals' who know how to set up flashy websites and belong to fancifully named organisations often set up by themselves or their partners......
I am so used to this now that I accept this is how I am.  I persist with private treatment by antibiotics and Rife Machine because well, there is nothing else and I have to have 'hope'.  I have not given up, just come to terms with it.  My only real fear is that one day I could end up alone to struggle with this - but I am not going to waste precious energy worrying about 'what ifs'.  I just get on with it, such is life!  You get to realise what is really important, not the latest gadgets, not fancy holidays or the highest fashions.  But love, friendship, patience, inner happiness, stuff like that.

Test results etc

I went to see the private doctor again last week and she took blood for a test I last had done 3 years ago,  'ATP profile'.  We sent the blood to the laboratory straight away and on Monday the results were back with the doctor which she then sent to me.  The results show basically that the way my T cells convert used energy into new energy is now even slower than before and that my magnesium levels remain very poor despite having taken a 1000mg of Magnesium Mallate (it's considered to be a high dose) since the last test 3 years ago!  This is because Lyme Disease bacteria, the borrellia spirochetes, thrive on magnesium and suck your body dry of it!  They target the magnesium rich areas such as the joints which results in 'Lyme Arthritis', probably which I experience such pain in my joints as well as the stiffness!  So by taking the supplement, I am in fact feeding the little buggers but what can I do?  If I do not take it I risk getting so low in magnesium that I could suffer a stroke!  Please, take a while also to consider that I would know none of the above if left to the National Health Service who, because they do not perform ATP Profile test, do not even recognise the results!  So, when I say that Lyme Disease sufferers are left to 'rot', that is literally what I mean!

So, yes.  There is a very real, physical cause for my lack of energy!  So no.  Thinking positively will NOT cure me of my illness, but I do it anyway because well, getting depressed about it is not going to help is it?  I cannot exercise this illness away, nor will special diets, herbs or other potions help.  All I can do is to plod on with strong antibiotics 'pulsed' 4 days on, 5 days off etc and use of the Rife Machine once a month.  Te cost of the private treatment at this particular clinic are not that much really and it does mean that I get a ride out in the car at least nice a month, driven there and back of course.  I have been told that sadly, a total cure may not be possible as most people who think they are cured relapse again within months as the spirochetes hide so well.  But if this can go some way to alleviating my symptoms and slowing down the progress of the disease then all is  not lost and well, I have to try!

Interesting and well written article here to explain in very easy to understand terms, why LD is so poorly diagnosed and how it manages to evade treatment so well.

The Complexities of Lyme Disease - A Microbiology Tutorial: Part 1By Thomas M. Grier, MS

Update time - Treatment!!

Okay, time for an update.  A few days ago I was taken to see a proper private doctor (not a quack) at a private clinic 90 miles away.   She assessed and diagnosed me clinically (as the NICE guidelines do say you can for Lyme Disease, especially when there is photographic evidence, a timelined history and all the symptoms etc) and started me on a couple of weeks of very strong antibiotics (hereby known as abx) and also gave me a session on a Rife machine - a controversial treatment but it makes sense to me and as I am under the guidance of qualified medical professionals, I will give it a try.

Now fast forward to four days later......

Okay after 3.5 days on the antibiotics, I now have about 6 days without them. Then I start again. It's called 'pulsing' and is the best way to deal with the little fellas hiding in my blood. They think the onslaught is over, I then start to deprive them of magnesium (which I normally take a high dose supplement for as they eat it all!) and then, a few days later, I start to feed them again, they all come out of the blood cells and start to have a party and then THWAP! I start up with the antibiotics and zap a few more! That's how it will go now for months and months, maybe even years! It's a slow process for as many as the abx kill, they reproduce some more and also do their hiding and waiting thing just to make a cure that much more awkward. It's not like having abx for a chest infection, this bastard takes an age to get the top side of and even then it may never get cured as I have been left neglected by the health service way too long and its probably established through my entire body now!

So, how do I feel? I am not going to say 'fine' as that would be a lie. I feel like shit. There! Said it. I knew there would be a reaction to these abx - I just did not know how. I have struggled for the last few days and even someone 1000's of miles away has noticed I was quiet. (a good friend on Second Life - I talk more to virtual people in a virtual world than I do to people face to face now) Yes, they make me feel worse. It's all something to do with the build up of toxins as the abx do their stuff. So I have to remember to drink water, lots of pure, filtered water. It's hard enough for me to remember what time of day it is let alone remember to drink water! I have only just begun this journey towards a 'maybe' cure though so better get used to it. I just look towards that little light that beckons saying 'you might get better!' and keep walking slowly towards it.

For those of you looking forward to summer and long walks in the countryside, parks and woods - start looking at long summer trousers and getting some advice and also preventative stuff from http://www.bada-uk.org/
Remember, I was bitten in May/June 2008 and tick numbers are recorded as having increased a lot since then! You really do not want to risk getting this. Your social and working life will disappear fast as will your circle of friends apart from just a few who stay true and genuinely care. Lyme Disease is a steep learning curve as well as a pain in the neck.

Decisions, decisions!

IF I have blood tests performed by a German lab which specialises in Lyme Disease and its many co-infections (the best specialist lab for LD in Europe apparently), it will cost more than £1000 but the problem is that the UK NHS will not recognise the results even if found positive! UK tests are weak and unreliable, notoriously so. Even the manufacturers of UK tests warn that they throw up false negatives as well as false positives! But UK NHS would not treat me if German lab finds Lyme Disease and co-infections! So would then have to go to Germany for two weeks at a clinic which can begin treatment (staying in an apartment) which would cost at least £5000 in total. They then send you home with the meds which have to be given intravenously which means hiring a nurse to administer them from a private nursing agency - more expense. Then I would have to go back to Germany for a weeks review every few month and the treatment could take anything from six months to several years - imagine the costs if I made the decision to try this? All this and I should be able to be treated in my own country but to get treatment I would have to have a positive result from one of the lousy UK tests and thats so unlikely to happen even if I do have it!
It infuriates me that the antibiotics required actually would not cost the NHS very much at all as they are cheap drugs! But if they make positive diagnoses you see, they then have to admit that Lyme Disease does exist beyond a few weeks! Then that could affect the tourist trade and cause all sorts of political arguments! So, people like me have to suffer or spend what little we have trying to get better! I have been left so long now anyway that a cure is not certain and could take years to achieve, only to have the LD symptoms either return later or to be left with residual symptoms such as arthritis or heart problems etc etc!
Yes, we invested most of OH's redundancy but why should we have to spend it on what could be a futile attempt to get me better? Oh and I am sorry but please, nobody come at me with links to quack cures or websites of people who claim they can cure it with thinking therapies etc because they are bullsh*t, especially where an infection like LD is concerned! I am on relevant supplements, I do take painkillers only when necessary and I am grateful that I am not any worse than I am. So maybe we will just concentrate on making our home and lives as comfortable as possible if this is the way I am going to be left by the uncaring side of the NHS. I take magnesium mall ate, vits A, C, E and D, Selenium, Ubiquinol (which is high dose CO Q10), an aspirin once a day to thin my blood (which I know to be sticky) and codeine and paracetamol when the pains get really bad. Being ill is expensive!
Am still thinking about it though. Do I want to know I am positive and still get no help here? Do I want to know I am negative and have no explanation for these symptoms? people will say "Oh but you MUST try! Sell your house etc if you need to but try!" It's ok for them, they have not got it! Besides, going to and from Germany could set me back and put me in bed like other sufferers sometimes end up! No easy decisions I am afraid....