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.