A life destroyed by undiagnosed Lyme disease. I write this lying in my bed where I have been held a prisoner for 4 years, that’s 4 years of my life that I will never get back. Years that I should be out with friends, family going to nice places, travelling, getting married, enjoying my life, pursuing my singing songwriting but my life was ruined when I got infected with lyme disease and multiple infections.
I first became ill in 2011 after collapsing with a seizure and was taken to A&E in an ambulance after waiting hours to be seen I was treated like a hypochondriac told there is nothing wrong with me. I was sent home with no testing no help whatsoever. My life became a nightmare every night we spent going to hospital just to be sent home. Eventually I was kept in by you a junior doctor he said oh my god we need to do some tests you cannot walk! I had every test possible all came back normal was told we can’t find anything wrong with you??? this was so frustrating I just wanted a diagnosis.
Eventually I was diagnosed with a specialist with M.E/CFS but told nothing about it except there is no cure and to just go home and live with it for the rest of my life. I was not accepting this I had to get better! so I started researching myself and found out lots of information. The more I read all my symptoms matched with lyme disease but the doctors said I did not have this but I kept saying to my partner I really think I have this so we arranged private testing in another country as the tests in the UK are very poor and totally unreliable and even if you get a negative result you can still have lyme disease. So after my bloods came back I was quite shocked to see that they was a strong positive for borrelia and co infections and loads of viruses I was finally diagnosed. When I found out I cried I was actually relieved to find out the truth about what was really wrong with me after all these years of being fobbed off and misdagnosed with anorexia depression chronic fatigue syndrome, tmjd, fibromygalia.
Now despite having these positive results my doctors will not treat me for lyme disease they refuse to give me the treatment I need to treat it as they do not accept nor understand long-term chronic lyme disease in this country nor private testing. The standard 2 weeks of abx will not cure it even if you’re lucky to get that. Also there are no LLMDs in this country experienced in successfully treating it. When you have had lyme for so many years it is much more difficult and complex to treat it has caused serious damage to my brain, heart, body. I have stage 3 / late stage Lyme disease.
I am in serious pain everyday so weak so exhausted I am unable to stand or walk, talk. I can’t eat foods tolerate lights or sound and have seizures. Even if I sleep I wake up feeling like my body weighs a ton and I can’t move. Imagine everyday feeling like you have been hit by a truck the worst hangover the worst flu that you have just run a marathon and have not slept in a year, that’s what my body feels like everyday I am just left to rot to waste away. I miss my life so much. I want my life back. I want to be healthy again. I am being seriously let down by the NHS i have a life threatening infection but I cannot get treatment here…Why??
We need to have Lyme Specialists LLMDs in this country who can research lyme disease and put in place better diagnostic testing, to treat patients long term, to stop ignoring this spreading epidemic, more and more people are getting it everyday it’s serious. How many more innocent lives have to be destroyed and lost before they will stand up and take responsibility??? Give us the treatment we so desperately need and deserve!!!