Hi everyone
I found out after 9 years of an ME diagnosis that I had a pseudomonas aeruginosa infection that I caught in hospital 10 years earlier that spread spinal chord, brain causing ME. I had originally got treatment via IV antibiotics and thought no more until it returned. It is resistant to all drugs I have tried and last one ciprofloxacin and gentimycin I have had over 4 months of cipro plus loads more of the gentimycin for ears. The ciprofloxacin improves everything and I can walk and get around alot easier but it will all creep back again. My seizures have improved as I have epilepsy from childhood, had brain surgery 22 years ago but started having seizures but due to having previous ones it was put down to surgery not being successful when it was infact the infection as I now have very few since treatment.
My neurologist at the national queens square referred me earlier this year for CBT at the Royal London Hospital for integrated medicine where I am also under a neuropsychiatrist who has already said its not psychological and was going to pass me back to neurologist but I turned up looking really ill and she has since kept me on as a patient. I started the CBT around 5 weeks ago and so far dont think its done any good but them forcing me to do more and more each week. As I have epilepsy I cant drive so have to get around on foot and public transport. At the first appointment she said that ME is a real condition and asked me what I know and went through loads questiions. 2nd week she asked me to bring in a book I read and still had from when I first got diagnosed, book is by Charles Shepherd. I spoke to her following week and she wanted me to do more then I was able and I told her I felt relly ill so couldnt do what she asked and she wasnt happy and said that this is something I am going to have to put up with for the rest of my life. She has told me to get some dumbells to do some exercise to strengthn arms more and do things bit by bit and gradually improve without crashing. I cant see how this is going to help me when I have spent 12 years paceing and have improved as much as I can. She also said about fibromyalgia that I have to put up with as I taking pregabalin and few other epilepsy drugs. Do I just stop this as not sure how many weeks I have left. I think maximum is 9 weeks so would have about 4 left. Should I just continue do as they say and then when I end upback to square 1 again prove it dont work. I said to her what about end of the day or first thing in morning when I get home and am exhausted with severe pain or wake up exhausted and cant get up. Do I try to not think about it like they say and pretend the pain isnt there. My nerves become all inflamed and tingling from brain down like fire so I cant do nothing for days.
I found out after 9 years of an ME diagnosis that I had a pseudomonas aeruginosa infection that I caught in hospital 10 years earlier that spread spinal chord, brain causing ME. I had originally got treatment via IV antibiotics and thought no more until it returned. It is resistant to all drugs I have tried and last one ciprofloxacin and gentimycin I have had over 4 months of cipro plus loads more of the gentimycin for ears. The ciprofloxacin improves everything and I can walk and get around alot easier but it will all creep back again. My seizures have improved as I have epilepsy from childhood, had brain surgery 22 years ago but started having seizures but due to having previous ones it was put down to surgery not being successful when it was infact the infection as I now have very few since treatment.
My neurologist at the national queens square referred me earlier this year for CBT at the Royal London Hospital for integrated medicine where I am also under a neuropsychiatrist who has already said its not psychological and was going to pass me back to neurologist but I turned up looking really ill and she has since kept me on as a patient. I started the CBT around 5 weeks ago and so far dont think its done any good but them forcing me to do more and more each week. As I have epilepsy I cant drive so have to get around on foot and public transport. At the first appointment she said that ME is a real condition and asked me what I know and went through loads questiions. 2nd week she asked me to bring in a book I read and still had from when I first got diagnosed, book is by Charles Shepherd. I spoke to her following week and she wanted me to do more then I was able and I told her I felt relly ill so couldnt do what she asked and she wasnt happy and said that this is something I am going to have to put up with for the rest of my life. She has told me to get some dumbells to do some exercise to strengthn arms more and do things bit by bit and gradually improve without crashing. I cant see how this is going to help me when I have spent 12 years paceing and have improved as much as I can. She also said about fibromyalgia that I have to put up with as I taking pregabalin and few other epilepsy drugs. Do I just stop this as not sure how many weeks I have left. I think maximum is 9 weeks so would have about 4 left. Should I just continue do as they say and then when I end upback to square 1 again prove it dont work. I said to her what about end of the day or first thing in morning when I get home and am exhausted with severe pain or wake up exhausted and cant get up. Do I try to not think about it like they say and pretend the pain isnt there. My nerves become all inflamed and tingling from brain down like fire so I cant do nothing for days.