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History: came down with CFS-like symptoms (brain fog and mild PEM) in late 2020 and then mono 6 weeks later. I personally link the CFS symptoms to the EBV incubation period which can occur for 4 to 6 weeks before acute mono.
Had typical mono symptoms for about a week but went away within a day after being prescribed 3 grams Valacyclovir as treatment. CFS symptoms were a little worse but nothing crazy. Came off of VAL within a week but immediately got mono again. At least I thought it was. This time with 20+ mouth ulcers. I started taking VAL again and they all went away except for the original CFS symptoms.
Have tried this 5 times since being prescribed and the same thing happens. The last time I tried to come off VAL a year ago, I flared up with mono symptoms at mouth ulcers and went from mild/moderate to moderate. It seems like I have to be on this medicine to keep myself from getting worse.
With all that being said, I’m fairly confident that active EBV is driving my symptoms.
I believe L-Lysine 2 grams helps with the fatigue a good bit and NAC 600mg has too along with reduced swelling of my collarbone lymph nodes that never returned to normal after the first acute mono spell. Not 100% sure about these but there seems to be a correlation.
All the docs are baffled and tell me that VAL doesn’t work for EBV and it’s something else. They’ll test for other herpesviruses and nothing comes back positive.
I should mention that my IgM titers were elevated for several months after mono but are now normal. PCR goes positive the majority of the time when I stop taking VAL for a few days.
I really want to try Valcyte as I’ve heard really good things about people with chronic EBV. Tenofovir as well. Thing is, I don’t know where to begin to get these. My PCP only allowed me to try Famvir as an alternative which failed miserably. I didn’t flare up as badly but it didn’t keep the virus activity nearly as low as VAL does even on an equivalent dose.
I’m also interested in trying more supplements and herbal treatments to fight this off. Monolaurin is apparently great for EBV and it makes me feel like I’m in a flare for the first few days I’m on it but I’m worried it could overstimulate my immune system and make me worse. Not sure if it’s even affecting the EBV as it’s a powerful anti fungal and my reaction could be from that.
Also, my TSH has recently skyrocketed to 48 and my fT4 is low. I’ve heard of the link between EBV and hashimotos so this is very frustrating. Doc hasn’t gotten back to me about running more tests/treatment.
Would love to hear opinions/recommendations/experiences
Thanks
Had typical mono symptoms for about a week but went away within a day after being prescribed 3 grams Valacyclovir as treatment. CFS symptoms were a little worse but nothing crazy. Came off of VAL within a week but immediately got mono again. At least I thought it was. This time with 20+ mouth ulcers. I started taking VAL again and they all went away except for the original CFS symptoms.
Have tried this 5 times since being prescribed and the same thing happens. The last time I tried to come off VAL a year ago, I flared up with mono symptoms at mouth ulcers and went from mild/moderate to moderate. It seems like I have to be on this medicine to keep myself from getting worse.
With all that being said, I’m fairly confident that active EBV is driving my symptoms.
I believe L-Lysine 2 grams helps with the fatigue a good bit and NAC 600mg has too along with reduced swelling of my collarbone lymph nodes that never returned to normal after the first acute mono spell. Not 100% sure about these but there seems to be a correlation.
All the docs are baffled and tell me that VAL doesn’t work for EBV and it’s something else. They’ll test for other herpesviruses and nothing comes back positive.
I should mention that my IgM titers were elevated for several months after mono but are now normal. PCR goes positive the majority of the time when I stop taking VAL for a few days.
I really want to try Valcyte as I’ve heard really good things about people with chronic EBV. Tenofovir as well. Thing is, I don’t know where to begin to get these. My PCP only allowed me to try Famvir as an alternative which failed miserably. I didn’t flare up as badly but it didn’t keep the virus activity nearly as low as VAL does even on an equivalent dose.
I’m also interested in trying more supplements and herbal treatments to fight this off. Monolaurin is apparently great for EBV and it makes me feel like I’m in a flare for the first few days I’m on it but I’m worried it could overstimulate my immune system and make me worse. Not sure if it’s even affecting the EBV as it’s a powerful anti fungal and my reaction could be from that.
Also, my TSH has recently skyrocketed to 48 and my fT4 is low. I’ve heard of the link between EBV and hashimotos so this is very frustrating. Doc hasn’t gotten back to me about running more tests/treatment.
Would love to hear opinions/recommendations/experiences
Thanks