Monday, 26 September 2011

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!

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.'

Wednesday, 25 May 2011

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!

Wednesday, 18 May 2011

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! ->

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

Thursday, 5 May 2011

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.


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.


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

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!)