Hi all,
I've had a brutal couple of months. Long/short of it, I've consulted with Dr. Dantini and he thinks I have CFS. Here are the details:
- in mid-May I developed neurological problems: tingling in my fingers, then loss of strength, then muscle twitching (mainly on left side), then slight paralysis (left leg dragging a bit, lower lip was drooping). After seeing several doctors and having tests to rule out things like MS, ALS (MRI, CT scan, EMG, etc.) I saw a neurologist who says his best guess is I had a mild case of Guillain Barre syndrome.
- by mid June the GB symptoms had largely cleared up and I was feeling much better. Then around June 17-18 I came down with flu-like symptoms: sore throat, cold sweats, upper abdominal pain (liver/spleen?), pain just behind my jaw/inner ear (tinnitus?), and profound mental and physical fatigue. These symptoms were severe for about two or three weeks; during this time my sleep became disrupted, and I would wake up earlier each day, and having progressively lighter sleep. The flu-like symptoms mostly cleared up but I was left with a severe sleep disorder and associated fatigue.
- By late July I was barely sleeping at all. I had a sleep study which confirmed a complete lack of deep/slow wave sleep (only stage one sleep the entire night, plus restless legs, which is a new problem for me). Sleep medications were not helpful.
- in mid-August I consulted with Dr. Dantini. Based on my symptoms, he suggested his usual protocol of viral testing. We consulted again with the test results: I have a recently active EBV infection, with signs of a less-severe CMV infection (I don't have his write-up yet so I don't have the exact numbers). He advised he would be recommending acyclovir because my infection is not that severe.
- I saw a throat specialist next due to my persistent sore throat. I advised him of Dr. Dantini's recommendations, and he RX'd acyclovir at 400 mg X 4 times daily, for ten weeks.
- Dr. Dantini also recommended high dosage of melatonin to help with the sleep disorder. I found this has helped greatly and I am getting around 8-9 hours per night, although it is still not the greatest quality sleep and I wake up feeling not completely refreshed. The mental and physical fatigue persist throughout the day.
- Dr. Dantini also found I had low vitamin D (40?) which is odd because I take a lot of it (4000 iu per day, now up to 10,000)
- I can no longer tolerate any alcohol whatsoever. I instantly feel sick/dizzy after two drinks. This was never a problem before.
- Lastly, but perhaps of greatest concern: when the insomnia became severe in late July, the neurological problems (muscle twitching, mainly on my left side) seemed to come back. This is a minor annoyance but still of great concern because of what this can potentially signal.
my questions....
- Does anyone have experience with acyclovir for EBV infection? Results? I have been on it for five days so far.
- Has anyone experienced liver problems associated with viral CFS?
- Has anyone associated neurological problems (Guillain Barre, Parkinson-like symptoms) associated with viral CFS?
Thanks for reading.
I've had a brutal couple of months. Long/short of it, I've consulted with Dr. Dantini and he thinks I have CFS. Here are the details:
- in mid-May I developed neurological problems: tingling in my fingers, then loss of strength, then muscle twitching (mainly on left side), then slight paralysis (left leg dragging a bit, lower lip was drooping). After seeing several doctors and having tests to rule out things like MS, ALS (MRI, CT scan, EMG, etc.) I saw a neurologist who says his best guess is I had a mild case of Guillain Barre syndrome.
- by mid June the GB symptoms had largely cleared up and I was feeling much better. Then around June 17-18 I came down with flu-like symptoms: sore throat, cold sweats, upper abdominal pain (liver/spleen?), pain just behind my jaw/inner ear (tinnitus?), and profound mental and physical fatigue. These symptoms were severe for about two or three weeks; during this time my sleep became disrupted, and I would wake up earlier each day, and having progressively lighter sleep. The flu-like symptoms mostly cleared up but I was left with a severe sleep disorder and associated fatigue.
- By late July I was barely sleeping at all. I had a sleep study which confirmed a complete lack of deep/slow wave sleep (only stage one sleep the entire night, plus restless legs, which is a new problem for me). Sleep medications were not helpful.
- in mid-August I consulted with Dr. Dantini. Based on my symptoms, he suggested his usual protocol of viral testing. We consulted again with the test results: I have a recently active EBV infection, with signs of a less-severe CMV infection (I don't have his write-up yet so I don't have the exact numbers). He advised he would be recommending acyclovir because my infection is not that severe.
- I saw a throat specialist next due to my persistent sore throat. I advised him of Dr. Dantini's recommendations, and he RX'd acyclovir at 400 mg X 4 times daily, for ten weeks.
- Dr. Dantini also recommended high dosage of melatonin to help with the sleep disorder. I found this has helped greatly and I am getting around 8-9 hours per night, although it is still not the greatest quality sleep and I wake up feeling not completely refreshed. The mental and physical fatigue persist throughout the day.
- Dr. Dantini also found I had low vitamin D (40?) which is odd because I take a lot of it (4000 iu per day, now up to 10,000)
- I can no longer tolerate any alcohol whatsoever. I instantly feel sick/dizzy after two drinks. This was never a problem before.
- Lastly, but perhaps of greatest concern: when the insomnia became severe in late July, the neurological problems (muscle twitching, mainly on my left side) seemed to come back. This is a minor annoyance but still of great concern because of what this can potentially signal.
my questions....
- Does anyone have experience with acyclovir for EBV infection? Results? I have been on it for five days so far.
- Has anyone experienced liver problems associated with viral CFS?
- Has anyone associated neurological problems (Guillain Barre, Parkinson-like symptoms) associated with viral CFS?
Thanks for reading.