Help Louise with her medical treatment

In 2003 I was fit healthy and loving life. One morning I had swelling, headaches, and a raging temperature; I also noticed that I had been bitten. I went to bed that night with the worst headache imaginable. I woke the next morning and my legs collapsed. I had a widespread rash throughout my body, and went to my GP who said it was an allergic reaction. Gradually I became worse and my symptoms were horrendous. After years of going back and forth the GP'S and hospitals, I read an interesting article on lyme disease, so I went back to my GP ,who again didn't take me seriously. I continued to deteriorate and spent several years like this. I found a specialist in Cardiff who treated me on symptoms and I gradually got better and went into remission. 80 percent of My symptoms improved but not all.

3 years ago I had a horrific accident and broke my neck; 6 of my ribs; and had a collapsed lung, which was incredibly scary because I'd already had back surgery at 20 for a curve in my spine (the rods in my back actually saved my life when I broke my neck). I got over this trauma as much as I could, and last summer, just as Covid was starting to lift, overnight my symptoms returned. Going from working full-time to struggling to walk, breath with chest pains, joint pains and neurological problems was soul destroying. Again, I went back to my GP who said I had fibromyalgia and that the NHS guidelines would not allow him to treat me for lyme disease was so devastating. Debilitated and not wanting to live with this painful illness I kept on trying to find an answer as I knew in my gut that I had Lyme and not fibromyalgia. I found a clinic in London, and one of the only clinics in the UK who treats lyme disease. I had tests sent to Germany and America confirming that I have a severe case of lyme disease and need urgent treatment...

My symptoms are:

Eye floaters
Widespread pain
Crunching of my joints (arthritic lyme)
Swelling headaches
Pins and needles
Neck pain
Rashes
Burning pain all over my body
Shaking to my legs and arms
Nausea
Extreme fatigue to arms and legs
Nausea
Insomnia
Heart palpitations
Anxiety
Swollen lymph nodes
My knee caps literally move as if they're not connected to anything.

The NHS still refuse to treat me after 15 years of me working as a dedicated, caring nurse practitioner. Now I'm 3 hours away from home, really unwell, and scared I will not pull through this. I have to pay private at the cost of £9000. I have had to leave My little boy and tell him that I have to go on a course, because if he knew the truth, it would be too much for him. I'm devastated.

People are suffering due to this awful illness and when I'm better I'm going to raise awareness as cases are rising in England and Wales. I have never felt so ill and I'm scared for my future. Nobody should be left to suffer like this. The thousands of people I have helped, and I feel really let down. All I want is to make a full recovery, work hard, and be happy and healthy for my little boy and enjoy life. I hope my family and friends can help me, and anyone else who understands how difficult this is.

I would greatly appreciate any help you can. Thank you for taking the time to read my story.

Louise xxx



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Organizer

Louise Coles-Jones 
Organizer
Caerphilly, UK