"Lack of recognition for Lyme Disease."

My Record of ME/Lyme Disease

30 yrs ago I went down with what I thought was flu-body aching all over, wet through with sweat and dreadful back and headache -could not get out of bed. Doctor called out they diagnosed flu! I was no better by March and March the 8th - I prayed to die I was in that much pain etc. Happened again and ambulance was called and the young doctor said I was suffering from 'empty nest syndrome'. (I was 45 yrs old and all my children were either married or at university.) (they were so wrong-now the children had left home I wanted to set up my own business.)

Couple of months later when going shopping I had to come home the pain in my knees was that bad that I cried when I got home and it takes a lot to make me cry. Very foggy head I also had problem remembering where I had parked my car and had to sit down and trace my steps back. I eventually got my GP to refer me to rheumatologist in Burnley who diagnosed ME but when I later saw my GP they said 'Dont know why you want to prove you have ME for as there is no cure'.

Over the next 12yrs I developed severe arthritis and had to have two operations on my feet and gradually developed severe arthritis in knees and hands ( Public Health England -used to be the HPA states that arthritis can develop from Lyme without treatment- they are no advising doctors that patients that present with arthritis should be tested for Lyme disease!).

2007 - By now I had had a private diagnosis from a Dr of Lyme disease. They were the lead clinician and ME advisor to ME Asso - they sent my blood to a vet in Italy who specialises in cross over virus's/bacteria between animals and humans but GP etc would not accept the result so I went to Breakspear where I was once again tested positive for Lyme with tests done in US and Germany - again doctors did not accept the results.

I had antibiotics and penicillin IV injections from Breakspear Hospital but eventually my arthritis was so bad I could not travel and I ran out of money. I then tried to get treatment re NHS as by then my hands and knees were very disfigured and painful but although the the rheumatologist said I needed new knees they were very reluctant to operate as they did accept I had Lyme disease.

Over the past for 4yrs I have seen Neurologist Huddersfield HRI -did not accept Lyme and Infections disease specialist at both Manchester hospital and two at Seacroft Leeds hospital who also did not accept I had Lyme disease. In fact one said that if I had have had Lyme disease 25yrs I would be dead. They would not accept that Lyme disease could be chronic!! I have also had to have operation for prolapsed bladder as apparently borrelia (Lyme) loves bladders!

Have continual heavy night sweats etc and been diagnosed as having Community acquired pneumonia (I blame that on the pneumonia injection I had 3yrs ago) keep having bladder infections.

I have coped with chronic asthma/hay fever since the age of 7yrs -always worked as well as bringing up 4 children (one parent family through their teenage years. Three of my children have degrees -all teachers or social work and one is self employed ) always did my own painting and decorating-gardening-made my own and some of the children’s clothes-made my own curtains, duvet covers etc. I was a workaholic till the age of 45yrs when it was all taken away from me by Lyme disease.

I have tried complaining about the lack of recognition/diagnosis/treatment through the usual channels and wasted years of my life doing this- once again a brick wall and have lost count of the number of MP's/ministers I have wrote to. All I can say is that I am appalled at the ignorance when there is so much information and research papers out there.

Over the years I have been treated with disbelief and ridicule- just when are they going to accept it?