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!)