How are you?

Whenever anyone utters those three little words "How are you?" what do we reply?  "I'm fine!" of course!   Unless it is my daughters or my husband and then I say "I am 'as usual'" and they know that means I am no better and no worse.  But we still say 'fine'.  Why?  Because it saves us a lot of disinterested responses and also saves our enquirer from having to change the subject!   Unless a person truly cares, unless a person is truly interested, seriously, they do not want to really know! ;)  But, because I feel like it and because I have nothing else to do, I am going to tell you.   You may leave this page now if you are not really interested, I'll let you. ;)

I am knackered.  I had 9 hours sleep yet I woke up feeling like I had none at all.  In fact, I could not even raise my head from the pillow for a good 20 minutes upon waking and all I wanted to do was go back to sleep.  Often though, I do not sleep at all until say, 9am the next day so imagine how I feel then?

I ache.  Every bone, joint and muscle aches and burns.  A slow, dull ache that never leaves me in spite of taking codeine and paracetamol at least twice a day.  I hide my pain.  Nobody wants to see that do they?

I sit here with the curtains closed most of the day.  I cannot stand bright light and our living room is south facing.  Bright light actually hurts my eyes so much now that it makes my teeth ache?  I wear sunglasses in the day time, even through winter, unless it is very dull and cloudy.

My hearing is hypersensitive.  I cannot be in busy public places because of it.  That background hum of many people talking that you are so used to makes me want to run away (if I could) and induces such an anxiety inside me that I can almost have a panic attack!   I cannot abide the sudden loud squeals of children or sudden loud laughing from adults.  Even something like the TV where presenters are rattling on and on and then the blurb of adverts can also make me feel bad.  I carry around small sets of musicians ear plugs to drown out back ground noise.

Skin crawling, sudden stabbing sensations etc.  I take a pill three times a day for these and luckily it works for the most part - but not always.

Dizzyness.  This one sneaks up on me and it does not care where I am either!   The ground 'moves' and I sway.   I might bang into things or stumble.   I am usually pretty good at hiding it though as I fear people might think I am drunk.

Nausea.  Luckily not one of my worst symptoms but again something that can sneak up on me.  As I have a bit of a phobia about being sick, this is not a symptom I actually enjoy to say the least!

Depression.  This laps at my heels like an over attentive puppy.  It is partly frustration because I so want to do something that is now beyond my capabilities and partly despair because this illness seems to be never ending, with no respite.  But, I suck it up and I carry on.

Headaches.  These can be as severe as a sudden vice like grip on the top of my skull or just an annoying, persistent mild ache.  You are unlikely to notice as I hide them a lot. 

Cognitive impairment.  I forget a lot.  An awful lot!   I cannot concentrate.  I cannot take in new info.  I can however tell you what I learned even 30 years ago but tell you what I did yesterday?  I might have to consult my husband about that!

So yes, this is how I feel most days, sometimes worse, sometimes not quite so bad but it is usually pretty consistent.   This is why I cannot work and socialise as I used to.

With the advent of social media, nobody bothers to come round to see how a person is anymore much less phone.  Sad fact.  If I deleted Facebook, I would be almost totally lonely.  Yet because I do use Facebook, I feel isolated from society and 'left behind'.  What a quandary!

Nobody likes a moaner huh? Unless it is a common cold of course and then everyone weighs in with the sympathy! :D  But that is gone within a few days.....  Aww!   I actually feel like I am getting flu most days, or suffering from the remains of a hangover?   I have felt like that for over 8 & 1/2 years now and counting!

But, I am fine!

New Year musings

I realised that it has been 2 & 1/2 years since my last blog post and so, here I am again.  Not much has changed, not a thing, a big, fat, nothing!   Well okay I lie!  Physically I have gone downhill.  I cannot walk far unaided any more without ending up in a lot of pain.  Even with aids like a walking stick or wheeled walker, I cannot be upright for too long.   Even a short stint round the local supermarket leaning on a trolley leaves me mentally and physically exhausted.  I actually do not go to such places alone now as I fear I may have a funny turn.  I also feel very vulnerable.  My visitor list to my home gets shorter by the year and instead, I keep up with the lives of friends past and present via Facebook instead.  I also keep up to date with goings on in the world generally, especially where Lyme Disease is concerned.  Theer are a couple of friends I have not seen for years who do not live that far away!  But they are 'busy' and in good health so......

Do I have any hope of a cure coming my way?  To be perfectly honest, I am a realist and though this may annoy the positive thinkers like hell, no.  I do not hold out much hope at all for a cure because a) I am still diagnosed with CFS by the NHS anyway and b) even if they do find a cure, by the time the UK gets with it, it could be too late for the great misdiagnosed like me! 

But, I carry on and I do the best that I can.  I refuse point blank to make myself more miserable by chasing rainbows, I mean treatments, via special diets, cutting out this and that and other assorted faddy tricks!  My spirochetes do not care about all that!  I also refuse to spend thousands of pounds taking huge journeys that can risk me ending up worse than I am, chasing after expensive treatments abroad!  Sorry if that is your thing but it isn't mine, end of!  Pushing such therapies, diets and protocols down my throat will result in me spitting them back out at you!

I think this illness has made me more stubborn but also more conscious and caring about the suffering of other people?  I know damn well most people won't care about me, won't care that I dropped right off the dog training scene and declined socially because of this illness of mine.  Only a few actually show any concern for me and that's fine but I won't be the same about other people.  I am now one hell of an armchair warrior.  I share articles, sign petitions and also write to my MP, all these about many different subjects, not just about Lyme.  I tend to look at what I have got and what i can still do.  But even now and then, a depression will grab me, usually of the 24 hour kind and I will have my own pity day, cry, talk about it to my husband and then, I pick myself right back up again and I carry on.  

I have been abandoned by the medical profession in this country, to a diagnosis of Chronic Fatigue Syndrome.   That means no care as such, apart from renewing prescriptions every few weeks for an increasing variety of the more serious symptoms.     Lyme is on the increase but the media are downplaying it and the NHS pretends it is not really there.  Our politicians don't care either, well maybe some do individually but the majority won't listen to them.  This reminds me of when HIV/Aids became an issue back in the 80s, with the lies, cover ups and indifference such people showed until it reached a point where they could no longer ignore it!

I guess I will be writing more posts as time goes on but I doubt anything is going to have changed much when I next do it.   In the meantime, look after yourselves and your loved ones if you go walking in the great outdoors and even in your own gardens!   Learn what Lyme is.  Learn how to take ticks off correctly and get ready for a battle if you or loved ones are unlucky enough to be infected!   Oh yes, you should already know how to do all this, all those articles I shared?

That you probably skimmed past as it does not apply to you..... yet!

But everyone gets..........

Many sufferers of Lyme Disease and other illnesses that affect people in similar ways will nod their heads all the way through what I am about to put there.  We have all heard it and experienced it, from friends, relatives and strangers alike.  It never gets any easier to bear either!

"Oh but I get tired too!"  "Everyone gets tired!"  - True.  Of course 'everyone' gets tired. But when you get tired, you go to sleep and wake up refreshed.  I don't!  You can sleep 7 or 8 hours and wake up and go to work.  I can't.  I still feel like I could sleep another 8 hours!  

"Ohh I get aches and pains - it is part of getting older, didn't you know?" - When you ache, you can sit down and rest for a while and it will go away.  I sit down and I still ache.  I ache after wandering out to get the post.  I ache after standing a little while, or bending down to retrieve something from the floor.  Or standing in the bathroom to clean my teeth.   Or raising my arms to brush my hair or tie my hair up.  It does not go away after rest.  I wake up aching!  I get shooting pains that migrate around my body, often for no reason at all.  I do not complain as I am so used to it now.

"The sun hurts my eyes too!  Oh and I hate loud noises." - Well yes, that's why there is a good market for sunglasses & earplugs!   But when I am affected by the sun, it can even be behind the clouds and it gives me a headache!  I am bothered by normal daylight so unless it is very cloudy or dark outside, you will see me wearing sunglasses when out!  Everyday noises like the burble of several people talking at once, children shouting and crying, TV commentators (especially those with the higher, nasal voices!) strimmers, mowers, clippers etc can all make ill people like me feel anxious, irritated or even tearful.   We do not just 'not like' noise, we absolutely dread it!

"Everyone gets depressed sometimes!" -  Very true!  But do you get depressed because you have lost friends, even family who won't come to see you anymore because you are 'boring' and cannot jump to it and go out, do this, do that with them?  Do you get depressed because you can no longer pursue the sports and hobbies you once loved?   Or because you had to give up working?  Or because you have no been outside for weeks because there has been nobody available to go with you?  Some people even find their marriages flounder because of this type of illness because after all, not everybody is cut out to be a carer and they want to have a normal life, not a restricted one.

"Oh I forget stuff all the time too!" - Yes!  It is normal to!  What is not normal is forgetting what somebody told you minutes after they said it.  Not being able to recall what you did yesterday never mind last week!  Reading the same passage in a book over and over because you forget where you got to!  Wondering where somebody has gone, even getting up to search for them although they told you several times where they were going!  Crying because you feel so frustrated at forgetting how to play a board game that you have played lots of times before.  Ordering the same book or DVD twice because you forgot you already had it.   Watching a film like it is the first time you have seen it yet you are assured that you only watched it a few months ago.   I could go on... but that could get depressing!

"You would feel better if you exercised more/thought positively/ate better"  - Now, where did you get your medical degree huh?  I would LOVE to exercise more, but to do so costs energy and a major part of my illness is pitifully poor energy levels.  People like me run on an almost flat battery and we do not recharge simply by resting like you do.  15 minutes exertion can mean 3 hours sleep afterwards.  An afternoon out, even using a wheelchair or scooter can lay us up for three days afterwards from the visual and aural stimulation we have to endure.  As for thinking positively, one thing being ill like this teaches you is to be realistic and not to waste energy chasing after expensive, fake 'supposed' cures etc.  Now if that is negative thinking then here, you have it.  Go do it and see how far you get (and how much out of pocket too)!  I will stick with being realistic thank you very much!  As for eating better, if you had my digestive problems, you would soon realise that you have no other choice but to eat a decent diet as I have done for years now.

"But you look so well!"  - Why thank you!  You don't see me the rest of the time though do you?  Oh yes, I can come out and I make sure I look as good as I can when I do.  But you won't see what happens when I get home and have to go to bed for several hours because I am exhausted.  Not just a 'bit tired' but bone crushingly, mind numbingly exhausted, slurring my words and moaning as I get into bed because I ache so much.  Many illnesses and disabilities are not visible anyway.

I try not to talk about my illness too much to people apart from my husband anyway, because someone inevitably comes out with one of the above remarks and it gets a bit tedious after a while.  I know they mean well and are not trying to patronise me or belittle my illness but really, their version of tired, achey etc is 'normal' and is sorted out by proper rest- mine is not.  

I really do wish that thinking positively would cure me!  If only it were that simple!   However, the borrelia spirochetes that the tick so kindly injected into my body during its bite (sarcasm intended!) giving me Lyme Disease as well as a myriad of co-infections, do not care how positively I think as they burrow their way into my tissues, bones, nerves, sinews and vital organs. 

Please, please be tick aware and do not end up like me.  Don't ignore a tick bite and insist on prompt and proper treatment if you are.  Do not take it for granted that the NHS will help - many of them do not even know about it and those who do have their hands tied and their minds closed by out of touch guidelines originating from the USA, bound up in politics and red tape.  It is actually, a sobering thought that the veterinary profession is actually much more knowledgable about it and that your pet is likely to receive thorough treatment until it is cured if it is affected by Lyme Disease!  Humans just get told they have CFS (Chronic Fatigue Syndrome) and are cast aside to cope alone instead!   
A good site for more information is Lyme Disease Action if you wish to know more.





  

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....

Update

Well it is October 2012 and I am still no further forward in getting the true nature of my illness recognised and heaven forbid, actually treated!   Oh yes, I could spend over £1200 to get a test done by a lab in Germany but even if that result was positive, the UK NHS will not recognise it nor act on it!  Any private doctor in the UK who has been seen to help Lyme patients have been silenced by the GMC and the remaining few are so expensive that we would need a second mortgage to get treatment and who is to say that they too won't end up being restricted part way through my treatment anyway? 

I am not one for trying quack cures but I do take several supplements that I hope will at least help to alleviate the severity of symptoms including magnesium mallate, vits A,C, D & E, Selenium and Ubiquinol. (high dose CoQ10)  But they can keep their 'talking therapies' and strange herbs and potions, peddled by unqualified people whose only interest is making money!

I MISS being able to work.  I MISS being able to have an active social life.  I MISS being able to walk my own dogs.  There are so many aspects of my life that I miss but I am resigned to this fate - fretting about it won't cure it!   There are worse things I could have after all. - I suppose!

Some thoughts

3 & 1/2 years ago I was diagnosed with CFS.  This was after six months of the same symptoms followed by bog standard blood tests to see if anything obvious was causing them.  There is no diagnostic test for CFS - the diagnosis is made on symptoms alone!  My symptoms all closely followed a strange circular rash on the side of my hand/wrist which persisted for about 3 months.  It is my opinion therefore that my symptoms may be caused by Chronic Lyme Disease.  Because the NHS do not recognise CLD it therefore does not exist so I cannot have it, particularly as their test is next to useless, a test condemned by Lyme specialists all over the world!

'CFS' was a term coined by the medical profession as an alternative to 'ME'.  ME is considered by some to be a different condition altogether!!!  It probably is but nobody will ever know until there is some proper research done that everyone can agree on.

In the meantime, people like me are flailing around in a quagmire.  Our work lives are in the trash.  Our social lives are severely limited.  For some, their families are falling apart because of misunderstanding and suspicion. (that people may be putting this illness on!)  Sadly science and politics are inexplicably intertwined so any sign of proper help and treatment for sufferers is still just a dream!

It is so frustrating!

Letter to my GP

I have written this letter to my GP and will get it to the surgery tonight.

Dear Doctor,

I just wanted to write and thank you for believing me when I approached you about the possibility of my CFS symptoms being caused by Lyme Disease.

I have since had an appointment with an Infectious Diseases Consultant at Nottingham City Hospital, on the 4^th of July. Sadly the young male consultant has already got preformed ideas about Lyme disease and stated to me that he did not believe I had it because of the following reasons;

• My test was negative.
• According to him, Nottingham is not known for Lyme Disease so it couldn't be that! (well it won't be if so few diagnoses are made!
• As the NHS does not recognise 'Chronic' (that is, long term) Lyme Disease then of course, neither did he! People who contract it must miraculously make recoveries then when untreated yet still retain the symptoms!
• I should not believe everything I read on the internet – people have only to look at the symptoms of a disease after all and they assume that they have it! (So I am imagining it? Nice!)

So basically, he IGNORED my history – I gave him a copy of the time line from rash to symptoms to CFS diagnosis plus the list of my symptoms and photographs of the rash. He did decide to repeat the Lyme Serology test, denying of course that it is unreliable. He also decided to run other blood tests, the nature of which I cannot remember, He had an ECG performed on my heart on account of the palpitations I occasionally get. He examined the results of the ECG afterwards and my heart is absolutely fine.

So anyway, thank you for what you have tried to do for me. Should you be able to get me a second opinion with a consultant who knows a bit more about Lyme Disease then I will happily go. But if you can't then at least we have tried. If only I had realised what that rash and subsequent symptoms possibly were at the time, I may have been taken more seriously then.

I never expected a cure – I just expected to be believed. You believed me – he didn't.

Yours sincerely

...

My consultant appointment/debacle today

It wasn't ideal really that I only managed to sleep last night for 3 hours and after getting up for a couple of hours, I managed another 3 after going back to bed.  So of course, I was not at my best after driving the 25 minute journey to the hospital, going in by the wrong entrance, then having to return to the busy main road to go back the way I came to find the right one!  Other than that I got a disabled space straight away near the doors of outpatients and found my way to clinic 5 easy enough.  It went downhill again from there.

I was called in after a 20 minute wait and found myself face to face with a very young oriental doctor and his student, a nice young woman who said nothing throughout.  I was asked about how I had been before the rash and symptoms, what sort of life I led, how active etc.  That was quite hard for me actually as I guess I am still grieving for all that I used to be able to do.  Then he asked for details of the timelines of events from the rash to when I got my CFS diagnosis.  I had pre-empted this by printing off the relevant part of the letter I had done for my doctor before and also included photos of the rash.  He read through it all then asked me again so I went through it, slightly puzzled as I had included this information in the letter I had just given him!  Then he asked to examine me, checking my glands, listening to my heart and lungs etc.  He noted my shortness of breath - me being foggy through lack of sleep I had totally forgotten to tell him I was asthmatic!

He then sat down and started the fobbing off.  (I knew this would happen!)  He went on and on and on about how people look on the internet and think they have something from the symptoms they can identify with and how people go to private doctors and get tests which are not NHS ones, not done in the safe conditions of an NHS lab etc etc.  I zoned out at this point, partially because I was so tired and partly because the words 'Fob off' were running through my mind and distracting me!  He went on and on every now and then asking if I understood.  I had gone into a decline by this point and just stared at him with a "Yes".  He decided to repeat the Lyme Disease test 'to be sure' but said that in his opinion, I hadn't got it.  (This is despite my history with the symptoms starting after the rash etc and also despite the fact that the NHS does allow for clinical diagnosis based on history and symptoms even with a negative test!)

Anyway I went off for my bloods to be taken and then  for the ECG, both of which I have to say were done in record time with hardly any waiting!  I took the ECG results back to him and he said they were fine and that if the blood tests did show anything of concern, that they would be back in touch.  Other than that I was discharged!

I knew this would happen - I had already been forewarned how suspected Lyme Disease cases are ignored and discounted.  Yet it does exist!  But the NHS stance on it is that it doesn't!  It is a well known fact that the tests the NHS does are notoriously bad at picking it up and that indeed, the Lyme Disease bacteria  (Borrellia Spirochetes) 'hide' away in bones, muscles, organs etc and may not always be picked up.  People can have 6 NHS tests and only one will show positive - but that consultant only emphasised the risk of a false positive result, completely ignoring the fact that there are also many false negative results!  I now know why, in America where LD is rife in some areas, why they are taking to the streets to demonstrate against the Center for Disease Control ignoring them!

So, I am too knackered to keep fighting.  I feel fed up and weary of it all. I wish I had known about Lyme Disease back when I first had the rash and the subsequent symptoms then  maybe I could have got my problem taken seriously.  Now, 3 years after the event, it appears that it is all just supposition and that I am probably 'imagining' it according to them.  My GP believed me.  It all made sense to her.  But the NHS Infectious Disease consultant is casting it aside with an "I don't think you have Lyme Disease." and that's that.

Mind you, even if they did accept that this is what is behind my symptoms, their treatments for it are as lacking as their ability to diagnose it!  I just have to accept that I have this blasted 'Chronic Fatigue Syndrome' diagnosis and be done with it.

CFS - the dustbin diagnosis for "We don't know what's wrong with you and we aren't too bothered about finding out either.'

Had the test

Yesterday I went for the blood test for Lyme Disease Serology.  I then made an appointment to see my doctor in just over 3 weeks time, to allow for the results to return.  Regardless of whether or not it is a positive result or not, she can then refer me to the consultant who can then start trying out whatever treatment protocol he thinks is appropriate.  The Lyme Disease tests are notoriously inaccurate as the Lyme bacteria can 'hide' so diagnosis is not dependent upon a positive result as the timeline of the rash and then the symptoms starting are enough for the consultant to base a diagnosis on.  I am so glad now that I took photos of the rash and that I had to seek my old GPs help in clearing up its infection as nobody can say tht I am making it up.  Having been diagnosed with CFS for so long, I have become all too aware of peoples scepticism when you have symptoms that cannot be seen!

The GP visit and success!

Well I have just been and she had read my letter & documentation I gave her about Lyme Disease. She had rung an infectious diseases consultant who recommended that I was actually tested for LD then regardless of result, to refer me to him! LD tests are notoriously inaccurate due to LD bacteria 'hiding' at will so he will see me anyway based on my symptoms which they say are neurological and indicate it anyway, especially with me having had the rash etc. So it is, at long last, being taken seriously! It has taken me three years to get a gp to look further than the CFS diagnosis! I have been warned that even after treatment, I may still be left with all my symptoms but at least if the LD bacteria are annihilated, I should not get any worse.

I am going with an open mind - I do not expect a miracle cure. So, I have my LD serology test done on Tuesday and am then to see my GP again three weeks later whereupon she will probably refer me to the consultant for Infectious Diseases.

I would never have got this reaction from my old GP so am glad that I have changed.


If you are ever bitten by a tick, get your GP to take it seriously if you start getting symptoms. A positive Lyme test result is not necessary as the test throws up false positives anyway as they can diagnose you on symptoms alone if they suspect a tick was involved. Not all ticks carry Lyme Disease but some do and I was just unlucky. 


My love of yomping through local woodlands with my group of dogs came to an abrupt end because of this.  I can no longer ride horses, do agility with my dogs, walk my dogs for any  length of time, go out clubbing with friends or swim 50 - 60 lengths 3 times a week like I used to.   I break out into a sweat even doing something like dusting and polishing.  Pushing a vacuum cleaner causes me such pain in my hips and back.  I wake up every morning feeling like I haven't slept!  I ache, I get nagging pains and sudden stabbing pains anywhere and everywhere on my body.  I cannot stand loud noise, I cannot go out into bright daylight without sunglasses on.  When it is sunny outside our curtains have to be closed.  I perpetually feel as though I am coming down with a cold or the flu.  My short term memory is stupidly bad and I can no longer absorb new knowledge and information like I used to.   This disease leaves you with a 'half life'  Don't let it happen to you - it IS on the increase! Educate yourselves and learn how to avoid getting bitten and how to deal with it if you are.  Keep this page on your favourites - you never know! -> http://www.bada-uk.org/defence/indexdefence.php

Be safe.  Be Tick Aware no matter where you live.  They have even been found in gardens.

My cfs/ME (possible Lyme Disease) journey

I have decided, with the assistance of BADA to have another go at getting a proper diagnosis of what set me off with these cfs symptoms.   I feel that I was fobbed off by my old GP (they have a reputation for 'not caring' there sadly!) and have recently changed to another surgery in the next village.

So, I have today delivered this letter to the surgery along with pictures of the rash I had back in 2008 and also a 9 page document aimed at GPs produced by the Chief Knowledge Officer of the NHS.

I will keep this blog updated with my progress as to this matter along with other items of interest to cfs/ME/Lyme Disease sufferers and their family, friends, colleagues etc.


Here is my letter, kindly edited by people from BADA.

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I have suffered with health problems since 2008 and was diagnosed with Chronic Fatigue Syndrome in 2009. It has been considered since that I may have had Lyme disease but at that time I was given a week's course of antibiotic treatment for a suspicious rash and have been told since that this would have been sufficient to treat the infection. However, treatment guidelines suggest that a minimum of 21 days is needed and I am concerned that, if I did indeed have Lyme disease, it may be unresolved and be the cause of my continuing ill health.  I have given a summary of events below:

May 2008 - After walking in woodland with my dogs I developed a circular rash over my hand and wrist which expanded to approximately 4-5 inches.  I do recall brushing some sort of insect from my hand but thought nothing of it at the time. The rash became infected and I also developed a stiff neck at this time. (Pictures of rash enclosed on separate paper)

June 2008 - Rash was treated with antibiotics and cream but it did not clear. I took photographs of the area. I became exhausted and was dropping off to sleep in the day. My neck and upper back were still stiff.

July 2008 - Rash still present.  I felt as if I had a cold and developed intermittent blurred vision. It caused problems when I was driving and sometimes I had to stop to rest my eyes before I could continue.

August 2008 - Rash still visible but fading. Neck stiffness improved but bouts of exhaustion still a problem and I developed insomnia. I took a week's holiday to try to recoup but had to sleep every afternoon to recover from outings.

September / October 2008 - Rash healed but other symptoms debilitating. Visited GP but blood work normal apart from a slightly elevated liver enzyme test. I rarely drink alcohol so this was unexplained.

January 2009 - Diagnosed with Chronic Fatigue Syndrome and referred to CFS/ME clinic. Attended an 8 week course about pacing etc.

January 2010 - I read about Lyme disease and saw a photograph of Erythema Migrans very similar to the rash on my hand and wrist. I discussed this with my GP and he said I may have had Lyme disease but the antibiotics I had for the rash would have treated it. I continued pacing and do to this day. My symptoms remain:

·         Chronic fatigue and pain / stiffness after activity (use a wheelchair, walker, and stick)
·         Joint aches
·         Burning sensation in muscles
·         Dry mouth and eyes
·         Intermittent dizziness / vertigo
·         Noise and light sensitivity (difficult to cope in noisy situations and need sunglasses outside and curtains drawn indoors)
·         Visual disturbance (blurring and floaters)
·         Poor memory and cognitive difficulties
·         Gastric and bowel problems (bloating and diarrhoea and acid reflux)
·         Weight gain (I try to exercise but my health issues make it difficult. Swimming has become a problem so I walk in the pool rather than not go at all but am exhausted afterwards)
·         Sleep disturbance / insomnia
·         Sweating bouts, even if I am fairly inactive
·         Stabbing pains and itching mostly of face, arms, legs and feet (I take antihistamine to combat the itching)
·         Slurred speech with the exhaustion.

I understand that most of my symptoms are rather non-specific and could be attributed to many other conditions, but the events leading up to my ill health could be suggestive of Lyme disease and I would like to discuss the possibility of further investigations / treatment  in case I have an unresolved infection.

I have enclosed a copy of the NHS 'Map of Medicine' guide to Lyme disease in case you are not aware of this resource. It highlights some of the current issues with testing sensitivity and that both false-negative and false-positive results may occur. It also discusses the two standards of care that seem to have resulted from two conflicting sets of American Lyme disease guidelines. It concludes that some patients may require treatment beyond 21 days.

Due to the fact that my history is rather complicated and that appointment time is limited, I felt it would be preferable to write to you detailing my history and I will follow the letter up with an appointment in a week or so’s time so that we may discuss things further.

Thank you for taking the time to read this letter and the enclosed NHS guide. I would also like it noted that due to my cognitive difficulties I had help in writing it.


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Pictures of my rash (which unfortunately do not represent how bad it actually looked - people thought I had suffered a really bad burn!)

I also included a print out of this link - http://www.bada-uk.org/downloads/nhs%20map%20of%20medicine_lyme%20borreliosis_2010..pdf

I have taken this in to the surgery today and will leave it a week before making an appointment for the following week.   I will then update this blog with what the GP says and what treatment he agrees to give, (if any!) and then keep this blog updated as to whether I improve. (or not as the case well now be!)