I know I know, no post for a week then two on the same day but I am celebrating.
Just compare this post written last November and my other post today. What is the difference?
Just compare this post written last November and my other post today. What is the difference?
I'll tell you what.
I have a diagnosis after 15 years. I am not a basket case, I have a bacterial infection. That infection is the causative agent of Lyme disease. Most importantly I am having treatment. After 11 weeks treatment I feel wonderful, I can function more than I have been able for about 10 years. Yes I know I have wasted 15 whole years of my entire life, a whopping 29% of it. But now I have hope, recovery and and best of all some normal life.
The disturbing thing is that none of this improvement is down to our wonderful NHS. I found the cause myself (after I recognised a picture of the Lyme rash as one which I had had). I was advised by the Eurolyme website and I found a private doctor who had the training and the skill and most importantly the interest to want to treat me. In 15 years all the NHS wanted to do was either ignore me, send me to a psychiatrist or give me unproved, dangerous, half-baked quack remedies. No-one wanted to treat me as a whole person with one illness.
Even now I have a treatment I will have to pay for it myself shortly via private prescriptions. My GP practice said that they will no longer be able to provide prescriptions for such a 'controversial' treatment as it is 'off-guideline' and unproven. OK , so they would rather I stay ill then? Even though my private doctor is in full contact with my NHS ones the NHS ones choose to disregard his expertise and go their own way. Even my NHS arthritis consultant has written to my GP (after being informed, out of courtesy, that my medications had changed and that I had a new diagnosis) and stated that I should stop this new treatment immediately. Why? because I am getting better?
I am now in total dispair at the state of the NHS. It seems the powers that be would rather follow regulations than provide what actually works and they also seem to want to keep people sick for long periods rather than in the first instance test them for their condition and secondly treat them when they do get the results.
I find I am in increasing agreement with John Crippen, the NHS Blogdoctor. I was never politically minded as a youngster, I was always too busy on other things. This life of mine has taught me otherwise, after all, I have had 15 years to think about it.
The whole situation in this country with regards to ME and Lyme disease is a shambles. It appears that there are dark forces at work keeping patients with these illnesses in thrall to the pyschiatrists. Far be it from me to speculate further here, but a quick of review of some of my sidelinks will give you food for thought enough to keep you reading for a twelve-month.
Just ponder this, how much money would have been saved if I had not been on benefits for 15 years and instead had a full range of tests and consulations followed by a course of treatment for up to 2 years. Now of course my condition is chronic, harder to treat, has given me other associated disorders and I might not recover completely.
Now multiply that figure by the estimated 240,000 ME suffers in this country, let alone those with undisclosed Lyme. You can draw your own conclusions.
4 comments:
Congratulations on finding the light at the end of the tunnel - commiserations for the cost of it.
Hope you continue to improve by leaps and bounds.
Vics XXx
So nice to hear you sounding like you do.
Something like I feel, I got feeling energetic and pain free with vitamins. In fact have lost 71 lbs since August 06, and am moving out of Montreal and entering into a great relationship. Strange what feeling well does for one.
Have you found out when your are moving yet?, I am leaving for the lake front house on April 30th.
When are you next going to Greece? Love your pictures.
Sorry for the book here, Hugs Jas, so happy for you.
Hi Vics, nice to see you here too!
Terry what news! Not moving for a while, due to no fault of ours but we are delayed a few weeks. Please send me your new addy and all the gossip!
Love Jas
xx
Jas, I can't find your email on my computer. It, along with many others, was lost when my daughter rebuilt this thing.
Are you still on MSN, if so sent me your email on my hotmail, as I still have you on MSN it should come up for you.
Would love more news.
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