"ME/Lyme disease"

The following is a record of the terrible time I have had over 25yrs of this illness called ME/Lyme disease

Occupation: Shop Manageress and yes it did stop me working at the age of 45yrs- it took me all my time to get out of bed to go to the toilet when I first became ill.

Suffered :25yrs

I was originally diagnosed within 12/18mths as having ME by both NHS specialist as well as privately but GP refused to accept the diagnosis and I was removed from 3 GP's panels because I would not accept it was 'all in my mind', and refused tranquillisers, but all I wanted to do was get to the bottom of what was wrong with me and get treatment and get back to work.

How as it affected me?: I was so ill I prayed to die on a number of occasions, even contemplated suicide, I lost my home as got behind with my mortgage, ruined relationships, took away all the things I loved doing such as gardening, cooking, painting and decorating, making my own clothes and making light furnishings such as curtains, duvet covers etc.

Diagnosis of Lyme: About 2006 I was diagnosed as having borrelia infection from 3 blood tests done. The doctor sent my blood to a vet in Italy that specialised in cross over viruses/bacteria between animals and humans but once again the diagnosis was not accepted by GP's. I tried to get funding from PCT to go to Breakspear but after 2yrs of sending info in I was refused treatment although they did fund initial assessment but I was then told I could get the various treatments locally through the NHS and so I tried. All I can say is that from my experiences I think the NHS is way behind in the treatment of ME/Lyme disease and allergies from which I have suffered for 61yrs.

The College of Physicians have done a report for Gov Social Service committee called, 'The Unmet Needs' that shows how lacking allergy treatment is in this country, consequently no treatment except to be offered nostril inhalers for hay fever that are not a bit of good (prescribed 40yrs ago) and told by rheumatologists that they did not deal with ‘Lyme ‘disease and told by surgeon that I needed new knees but he was reluctant to operate because of the bacteria. (He did accept the doctor’s diagnosis of Lyme)

About three years into the illness (1989)I had to have operation on both feet, three years later I had to have another operation on feet but they were not successful as shortly after I had to have boots and special insoles made at infirmary and podiatry treatment every 8wks and have ended up with arthritis in back, feet, knees, hands and shoulders, (Lyme arthritis?) I have had some GP's say terrible things to me such as 'I am not furthering your career of being ill,' 'This obese woman came to see me', (don’t doctors know steroids put weight on?) 'You will have to go back to work otherwise the DHSS will be on to you'. When I saw one doctor she looked at my file and said, 'This file is like someone of 90yrs old (I was 45), I have recently been called into the surgery by the manager to be told that the doctors had had a discussion and were not prepared to accept I had Lyme disease and that I went to see the GP too often, (these last two yrs I have been going about once every 6/8wks as I have been trying to get help with arthritis (now lost 3 and a half inches in height!)

I have not recovered, the arthritis is terrible and of course I still get the pain and fatigue but cope as not as bad as I was at first with the fevers and all over flu pain. Initially I could hardly get out of bed, the fatigue and pain was terrible and afraid I prayed to die on a number of occasions.

Because I have had very little help from NHS doctors I have recently paid to see a doctor privately and paid nearly £800 for tests etc and due to go down again for allergy/food intolerance tests doing that will cost me about £1000. Positive result again for Lyme

I cannot believe the attitude of the majority NHS doctors I have come into contact with. In my opinion they simply did not listen to me and have their own pre-conceived opinion. ME/Lyme disease is a viral/bacterial illness that I believe involves contaminated vaccinations./GERM warfare. I believe the gov has secret papers we cannot read for 70yrs the same as David Kelly the GERM warfare expert. WHY?

I worked, brought 4 children up as a one parent family (all are working, three have degrees)and coped with chronic asthma/hay fever taking 4/5 different inhalers and drugs including steroids and to be labelled as 'not wanting to work' as one doctor did I find insulting. I would gladly have my story published. I have lost 25yrs to this illness, but even worse is the young ones that have committed suicide, it is them that I really feel the injustice for.

Yours sincerely