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!)
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