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Currently on Valacyclovir but looking to switch to Valcyte

Messages
48
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
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
I'm similar to you except I think for me cmv and shingles/varicella virus are my issues.
I also do well with famvir, if I stop these viruses reactivate.

I'd say go for it with the valcyte but I'd be tempted to stay on the valtrex as well.

The earlier protocols for valcyte started with high doses and then lowered the dose after a few weeks. Many people struggled to handle these doses as had unbearable start up/die off type symptoms.

Many seem to do better starting at 1 valcyte tab a day and after several weeks than move to 1 valcyte morning and night. Higher doses depended upon how one was responding and blood work.

Personally I found after 6 months, my improvement plateaued and I really didn't need to stay on it longer. Once you stop generally you can also notice improvements as valcyte toxicity clears out.

You still may need to stay on valtrex to keep viral load down. Trial and error is the only way to know.

I'm planning on doing a valcyte course for 6 months. I will only take 1 valcyte a day along with famvir 500mg twice a day. Previous responders to valcyte do seem to respond quicker to the drug. Astragalus herb is good for kidney health so it can help prevent side effects from valcyte as can NAC protect the liver.

Cheers
 
Messages
48
I'm similar to you except I think for me cmv and shingles/varicella virus are my issues.
I also do well with famvir, if I stop these viruses reactivate.

I'd say go for it with the valcyte but I'd be tempted to stay on the valtrex as well.

The earlier protocols for valcyte started with high doses and then lowered the dose after a few weeks. Many people struggled to handle these doses as had unbearable start up/die off type symptoms.

Many seem to do better starting at 1 valcyte tab a day and after several weeks than move to 1 valcyte morning and night. Higher doses depended upon how one was responding and blood work.

Personally I found after 6 months, my improvement plateaued and I really didn't need to stay on it longer. Once you stop generally you can also notice improvements as valcyte toxicity clears out.

You still may need to stay on valtrex to keep viral load down. Trial and error is the only way to know.

I'm planning on doing a valcyte course for 6 months. I will only take 1 valcyte a day along with famvir 500mg twice a day. Previous responders to valcyte do seem to respond quicker to the drug. Astragalus herb is good for kidney health so it can help prevent side effects from valcyte as can NAC protect the liver.

Cheers

Hey thanks for the response.

I’d also be tempted to stay on the Valtrex at least while I start up the Valcyte treatment

Who prescribed it for you? I wonder if I’d need to show CMV antibodies, which I don’t have.

Best of luck with your 2nd valcyte stint. I wonder how famvir would work with me if I mixed with Valacyclovir