Thursday, 7 July 2011

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 4th 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


Monday, 4 July 2011

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.'