Saturday, 27 July 2013

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.

Monday, 3 June 2013

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!

Wednesday, 29 May 2013

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.

Thursday, 7 March 2013

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

Sunday, 3 February 2013

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
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.