Many of you may know that I have had Chronic Fatigue for thirty five years now, combined with Endometriosis, Migraines, Panic attacks, Depression, Inner ear vertigo, Fibromyalgia, Hashimoto Disease (where my thyroid disappeared all together) and finally they now have accepted that I have Lyme Disease too.
These, I now believe, are all interlinked autoimmune issues that need to be seen and treated as a whole.
Standard medicine has let me down and GP's either don't know what to do or just don't care any more as they wilt under the weight of patient numbers and insufficient funding.
It has been such a frustrating experience for me and I feel I have had little real support from the medical establishment to help get me better.
I've been left on my own to try and find an answer. Anyone else recognise that?
Earlier this year I finally found someone helpful and went to London to see Oliver Barnett at the London Clinic of Nutrition.
We did various specialist tests that were sent to labs in Germany. I came up positive with Lyme’s disease and various other bacteria .
He has me on a special protocol which I have followed for about 8 months now and I would say there is a 20% improvement although I have plateau'd recently.
Before that, I had had many standard blood tests from various doctors in the UK and France including tests for Lyme and they all came back negative. The regular blood tests that are ordered by general practitioners are not always accurate and are always the cheapest option.
The standard basic Lyme test for example is known to often show up a negative whereas the specialist expensive test is more accurate.
I believe one day they will have to find another way of testing patients because many auto-immune diseases are hidden in the cells and basic blood tests just don’t pick up that information.
Cell based testing is needed but until drug companies and Big Pharma put people before profit, that isn't going to happen.
There are thousands of people like me all over the world. Brave warriors, left un-diagnosed, totally let down by the system, fed up and angry at being left on the side.
I have spent three quarters of my life in bed for the last thirty five years now.
And still - we are consistently told that it is all in our head. We are depressed or just imagining it.
Isn’t it about time there was more funding put in place to find some kind of cure for these horrid diseases that come in so many forms? We need to band together and fight for our rights to a full and healthy life.
We live in a toxic world. Bacteria has become monster unto its own and is beginning to out smart the human world due to the overuse of antibiotics for people and food livestock and of course genetic adaption over time. We need to take this seriously before it really is too late.
I want to say to anyone out there with CFS or an auto-immune disease.
You are amazing.
I know, when year after year you live with pain in the body, a fatigue that is nothing like normal tiredness, a foggy head and so much more.
When just getting up in the morning is a grand feat.
You are not alone! Together we have to make a change!!!
If you want to read more on my history with Chronic Fatigue / M.E / Lyme go to https://www.madeleinelee.com/chronicfatigue-autoimmune-lyme