"Lyme disease "
Posted by Joanne60 (as ),
I was bitten by what I now suspect was a nymphal tick in 2003 and then twice more in 2005 each time I developed a bulls eye rash at the sight which lasted about 4 weeks. After the first bite I developed a flu' like illness like no other flu' I had experienced, during the summer months with a feeling of rigidity throughout my body on waking.
I then progressed with migrating arthralgias between the first and later bites but after the second bites a full blown chronic condition of arthritis and muscle weakness developed.
As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Arthritis and muscle weekness, Musculoskeletal disease, Polymyalgia Rheumatica (for which I was put on steroids a no no for an infectious disease).
Over 4 years I saw 5 doctors and 3 Rheumatologists but it was a chance course of antibiotics which significantly improved my symptoms that led GP to suspect Lyme Disease. By then they had other cases of Lyme Disease presenting in the early stages at my surgery. GP said but you haven't had a bite. Oh yes I have I said and she was able to scroll back on her computer to the times I had attended the surgery with bites, bulls eye rashes and migrating arthralgias when the locum doctor had never suspected they could be connected with Lyme Disease.
Having been on steroids for 20 months I don’t think it was a surprise when the blood tests came back negative as they are antibody tests. According to the makers of the test kits a negative test can not rule out Lyme Disease and research shows that tests can miss up to 50% of cases.There are many reasons why these tests are not 100% not least because of the over 300 known strains of Borrelia.
Not surprisingly as the opportunity to treat with a short course of antibiotics was missed in the early stage of infection that course failed to resolve my problems. Our Health protection agency (HPA) would advise no further antibiotics because they follow the much contested guidelines of the Infectious Diseases Society of America (IDSA).
However the NHS Map of Medicine advises that for some patients alternative Guidelines those of the International Lyme and Associated Disease Society (ILADS) advocate longer courses of treatment with antibiotics.
In my case on antibiotics my symptoms improved and off antibiotics they deteriorated. Of course the HPA who follows IDSA advised my GP that my symptoms would be improving because of the anti inflamatory affect of antibiotics, in my case I was still on steroids although able now to reduce the dose gradually, and so any anti inflamatory affect would have been overshadowed by the steroids and also I was on an antibiotica not considered to have an anti inflamatory affect. They also advised that of the placebo affect well over 7 months into treatment and having the 'lazarus' affect whilst on antibiotics rather negated that opinion.
So against the standard advice given by the HPA my GP continued to treat me and I continued to recover my health.
For 3 1/2 years I had been unable to walk up or down stairs properly and at my worst had difficulty standing from a chair and walking across a room. I was retired early on ill health grounds but now I am recovered, I have no pain, no disability and have just returned from my daily cycle. How amazing is that?
I knew about Lyme Disease but had always thought it was unique to USA although I had asked one doctor if my arthritis could be linked to an insect bite to which she said no.
There is so little awareness of Lyme Disease in the UK even though there are many areas known to be endemic and I am in touch with patients through chat line Eurolyme who have been infected from most areas of the UK.
Where I live in Surrey many more patients have been diagnosed both in the early stages and in the chronic stages of this disease and yet doctors are taught that it is rare and many tell patients that you can't catch it in the UK.
There is a Worldwide controversy over diagnosis and treatment of this disease such that doctors are not being given all the available information in order for them to make informed choices and with time restrictions they just do not have enough time to do their own research.
This is an emerging disease rarely found in isolation the few doctors who specialise in treating patients privately find their patients are multiply infected sometimes with different strains of Borrelia and sometimes with various co infections most never tested for in the UK and some only recently being recognised as being prevalent such as the recent research done in Ireland on new strains of Babesiosis a Malaria like co infection.
Recently the Institute of Medicine had a workshop on the State of the science in Lyme Disease and Tick borne illnesses it is available to watch on their website and leaves those watching in no doubt of the complexity of all these tick borne illnesses with inadequate testing and capacity to cause chronic illnesses.
The short course of antibiotics advocated by the HPA/IDSA was introduced over twenty years ago before Willy Burgdorferi discovered that it was a spirochetal infection. Yes similar but more complex than syphilis and like syphilis it can affect every system in the body causing a muti system illness. However Lyme is more complex than syphilis and is on a par with TB and Leprosy who ever would treat patients for those diseases on a couple of weeks antibiotics and then say the remaining symptoms are 'all in your head' 'the aches and pains of daily life' or 'must now be a different disease' which is what patients are currently being told.
For more information see UK Charity Lyme Disease Action.