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First noticed brainfog, fatigue, and mild PEM around this time 3 years ago. Full blown mono a few weeks later and my symptoms got much worse. My PCP put me on 3 grams valacyclovir and the mono went away within a couple days but the symptoms I noticed beforehand persisted.
Came off the Valacyclovir(VAL) because I thought the infection was over and I’d feel better in a few weeks. Turns out I was wrong because I would get EBV flare ups about 24 hours after taking my last pill. They would improve in just less than 24hrs after taking a VAL pill.
These flare ups feel like a less severe form acute mono. The first symptoms I notice is that I get ulcers all over my tonsils(which become very swollen) and mouth along with a low grade fever. Then worsened PEM during the flare up and even long term after flaring up, and of course terrible fatigue.
I do believe this is an EBV flare up. I’ve been tested for other herpes viruses and always test negative. My EBV PCR is sometimes positive while off my VAL.
Considering the first symptom I notice is ulcers on my tonsils about 24 hours after my last VAL dose, I wonder if the EBV infection is lingering in my tonsils and my immune system can’t clear it. I’ve read that the tonsils can be a reservoir for EBV. Maybe a tonsillectomy will solve this problem.
Many doctors I’ve seen tend to believe that VAL does nothing for EBV other than inhibit oral replication, linking me to a study they’ve read (I will find this when I have time!). This makes me wonder if the benefit I receive from this drug is in line with EBV not replicating in my tonsils which causes less of an immune response thus improving my CFS symptoms. In my mind, removing the tonsils will remove EBV infected cells that are being targeted by my immune system.
-extra info-
3 years later my CFS is moderate/severe and I still have this problem but don’t dare to come off my antiviral because this will absolutely happen again and I may get worse. I missed a couple pills a few months ago and the same thing happened.
I’ve tried modest doses of both famvir and valcyte but they did absolutely nothing to stop these flare ups. Lysine, monolaurin, and several other herbal antivirals did absolutely nothing while while off my VAL, although lysine seems to help with brain fog while I’m on my VAL.
Side note: NAC seems to be the best non- prescription drug for my CFS. It seemingly brings my symptoms down from moderate/severe to just moderate while I’m taking it consistently. Interesting for sure.
Any advice is much welcome. My hypothesis may be completely ridiculous and getting my tonsils out could be a mistake. Would love to hear your thoughts. I’m very very nervous about this potential procedure because it’s a rough one at my age.
Thank you so much !
Came off the Valacyclovir(VAL) because I thought the infection was over and I’d feel better in a few weeks. Turns out I was wrong because I would get EBV flare ups about 24 hours after taking my last pill. They would improve in just less than 24hrs after taking a VAL pill.
These flare ups feel like a less severe form acute mono. The first symptoms I notice is that I get ulcers all over my tonsils(which become very swollen) and mouth along with a low grade fever. Then worsened PEM during the flare up and even long term after flaring up, and of course terrible fatigue.
I do believe this is an EBV flare up. I’ve been tested for other herpes viruses and always test negative. My EBV PCR is sometimes positive while off my VAL.
Considering the first symptom I notice is ulcers on my tonsils about 24 hours after my last VAL dose, I wonder if the EBV infection is lingering in my tonsils and my immune system can’t clear it. I’ve read that the tonsils can be a reservoir for EBV. Maybe a tonsillectomy will solve this problem.
Many doctors I’ve seen tend to believe that VAL does nothing for EBV other than inhibit oral replication, linking me to a study they’ve read (I will find this when I have time!). This makes me wonder if the benefit I receive from this drug is in line with EBV not replicating in my tonsils which causes less of an immune response thus improving my CFS symptoms. In my mind, removing the tonsils will remove EBV infected cells that are being targeted by my immune system.
-extra info-
3 years later my CFS is moderate/severe and I still have this problem but don’t dare to come off my antiviral because this will absolutely happen again and I may get worse. I missed a couple pills a few months ago and the same thing happened.
I’ve tried modest doses of both famvir and valcyte but they did absolutely nothing to stop these flare ups. Lysine, monolaurin, and several other herbal antivirals did absolutely nothing while while off my VAL, although lysine seems to help with brain fog while I’m on my VAL.
Side note: NAC seems to be the best non- prescription drug for my CFS. It seemingly brings my symptoms down from moderate/severe to just moderate while I’m taking it consistently. Interesting for sure.
Any advice is much welcome. My hypothesis may be completely ridiculous and getting my tonsils out could be a mistake. Would love to hear your thoughts. I’m very very nervous about this potential procedure because it’s a rough one at my age.
Thank you so much !
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