Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I've had CFS since 1989. For the past couple years although I haven't been able to work I have been able to cope and do so limited things. When I had better insurance in 2008 I tried Valcyte with my Dr. in PA for a few months and didn't notice any difference so I went off.
I am now in FL and a Dr. started me on Azithromycin 250mg 3x a week. After 2 months my fatigue was slightly worse, so the Dr. had me go off for 2 weeks to see how I felt. Before the 2 weeks were over I got worse fatigue like I haven't experienced in years. I went to Him and he wanted me to go back on the Azithromycin and start Valcyte again. Now the Valycte would cost me thousands and it didn't work before so I refused to go on it. He prescribed me Valtrex instead because he said it was cheaper.
I decided not to go on it until I talked to my Dr. in PA about it because I am concerned about the effects of being on antibotics long term. I am seeing the numbers for my liver on the blood tests going up. I have also had c-defecile in the past when I went on antibiotics. My fatigue has been pretty bad this past month and a hald and I am far more limited than I have been in years.
On other boards I see people saying how this antibiotic, antiviral protocal is helping everyone. Are there any people that it doesn't work for? The side effects for the antiviral are quite scary too.
I am now in FL and a Dr. started me on Azithromycin 250mg 3x a week. After 2 months my fatigue was slightly worse, so the Dr. had me go off for 2 weeks to see how I felt. Before the 2 weeks were over I got worse fatigue like I haven't experienced in years. I went to Him and he wanted me to go back on the Azithromycin and start Valcyte again. Now the Valycte would cost me thousands and it didn't work before so I refused to go on it. He prescribed me Valtrex instead because he said it was cheaper.
I decided not to go on it until I talked to my Dr. in PA about it because I am concerned about the effects of being on antibotics long term. I am seeing the numbers for my liver on the blood tests going up. I have also had c-defecile in the past when I went on antibiotics. My fatigue has been pretty bad this past month and a hald and I am far more limited than I have been in years.
On other boards I see people saying how this antibiotic, antiviral protocal is helping everyone. Are there any people that it doesn't work for? The side effects for the antiviral are quite scary too.
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I never felt any better on it, I just didn't want to get worse because I was already practically bed ridden.
Since I stopped taking it my hair has stopped falling out and the weird internal vibrating that I was having has stopped. I don't know if that is a coincidence or not.
I switched to ayclover in January but am only taking it every other day. I hope I see some more improvements.
I've seen two of the leading researchers/clinicians and neither suggested an antiviral. There may be a viral component to CFS but antivirals have not been shown to be effective.
If it's costing a lot of money, I'd quit taking these meds. Especially if they aren't working.
There are many that are taking antivirals and doing well. There is a whole section dedicated to
Antivirals, Antibiotics and Immune modulators on the Phoenix Rising site where people share their experience. You might check there.
http://forums.aboutmecfs.org/forum.php