Hello,
I am new here and before talking about my current situation I just want to introduce myself shortly.
I am 37 years old and came down with CFS/ME in January 2013 with an acute onset of a respiratory infection. I was not completely bed bound but severely affected. Could go to doctors but had to rest. Orthostatic intolerance was very bad. Could only sit for a few hours. Had to quit my job for 9 month and could luckily return to work in October 2013. I would say I reached 35% of my former healthy level. I was able to work 80% but had to rest after work at home. Housework (grocery, cooking, cleaning ...) was done by family. My employer is only 2 min drive far away from my home but could not walk, had to go by car. At the weekend I could go for a walk for 30 min once a day, resting, doing light housework and meeting friends at home, cinema or restaurant but no shopping tours and or long walking was possible. I relied on my car.
I was pretty much stable till march 2016. End of March I got an infection with campylobacter . My GP did not took it seriously and did not prescribe my antibiotics. Sadly the situation in Germany with regard to CFS/ME is not very good. Although my GP went with me through 2013, she seemed to forget that I am seriously ill. The campylobacter infection itself good better after 1,5 week, although cramps lasted for 2 weeks. But after 1,5 weeks permanent goosebumps started and I had the feeling something had started. I went to work but realized something had been triggered.
In the beginning of May the first relapse of campylobacter came and I went downhill and could not work any longer. I persisted of a second stool sample but the second one was negative in comparison to the first one. And so I did not get any antibiotics. I rested at home and tried to get appointments with alternative doctors. But after 3 weeks the next relapse occurred. It was very mild but took me deeper into my CFS/ME. I had trouble to leave the house and just 2 weeks later in the beginning of June the 3rd minor relapse occurred and left my bedridden from one night to the other.
Since June I cannot leave the house, I can shower only every two week, I have to lay down 23 hours and still my body is not recovering. I cannot speak for a long time. Cannot watch TV, read. Just on occasion got into the Internet with my smart phone. I am totally shocked to be bed bound do suddenly.
I cannot go to doctors any more. I am totally reliable on my family.
Since this situation my GP is overwhelmed and was now willing to contact the charité in Berlin (prof Scheibenbogen).
First the charité said it makes no sense to take an antibiotics but now they say I should try ciprofloxacin although all stool samples with exception of the first one in the beginning of April are negative. All stool samples were done with antigen test EIA.
I am now so afraid to take an antibiotics. I should have get it right from the beginning. But I don't now if I am benefiting from it now?
Do you have any recommendation?
I also could not find someone who got CFS or worsens after a campylobacter infection.
Do you have other tips what could help me?
I am so terrified that I am so suddenly bed bound since the 3rd of June, and I cannot get out for therapy.
And even though I am lying in bed 23 hours my body does not recover and I wake up with exhaustion.
Thank you
Lilly
I am new here and before talking about my current situation I just want to introduce myself shortly.
I am 37 years old and came down with CFS/ME in January 2013 with an acute onset of a respiratory infection. I was not completely bed bound but severely affected. Could go to doctors but had to rest. Orthostatic intolerance was very bad. Could only sit for a few hours. Had to quit my job for 9 month and could luckily return to work in October 2013. I would say I reached 35% of my former healthy level. I was able to work 80% but had to rest after work at home. Housework (grocery, cooking, cleaning ...) was done by family. My employer is only 2 min drive far away from my home but could not walk, had to go by car. At the weekend I could go for a walk for 30 min once a day, resting, doing light housework and meeting friends at home, cinema or restaurant but no shopping tours and or long walking was possible. I relied on my car.
I was pretty much stable till march 2016. End of March I got an infection with campylobacter . My GP did not took it seriously and did not prescribe my antibiotics. Sadly the situation in Germany with regard to CFS/ME is not very good. Although my GP went with me through 2013, she seemed to forget that I am seriously ill. The campylobacter infection itself good better after 1,5 week, although cramps lasted for 2 weeks. But after 1,5 weeks permanent goosebumps started and I had the feeling something had started. I went to work but realized something had been triggered.
In the beginning of May the first relapse of campylobacter came and I went downhill and could not work any longer. I persisted of a second stool sample but the second one was negative in comparison to the first one. And so I did not get any antibiotics. I rested at home and tried to get appointments with alternative doctors. But after 3 weeks the next relapse occurred. It was very mild but took me deeper into my CFS/ME. I had trouble to leave the house and just 2 weeks later in the beginning of June the 3rd minor relapse occurred and left my bedridden from one night to the other.
Since June I cannot leave the house, I can shower only every two week, I have to lay down 23 hours and still my body is not recovering. I cannot speak for a long time. Cannot watch TV, read. Just on occasion got into the Internet with my smart phone. I am totally shocked to be bed bound do suddenly.
I cannot go to doctors any more. I am totally reliable on my family.
Since this situation my GP is overwhelmed and was now willing to contact the charité in Berlin (prof Scheibenbogen).
First the charité said it makes no sense to take an antibiotics but now they say I should try ciprofloxacin although all stool samples with exception of the first one in the beginning of April are negative. All stool samples were done with antigen test EIA.
I am now so afraid to take an antibiotics. I should have get it right from the beginning. But I don't now if I am benefiting from it now?
Do you have any recommendation?
I also could not find someone who got CFS or worsens after a campylobacter infection.
Do you have other tips what could help me?
I am so terrified that I am so suddenly bed bound since the 3rd of June, and I cannot get out for therapy.
And even though I am lying in bed 23 hours my body does not recover and I wake up with exhaustion.
Thank you
Lilly