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Mestinon + Famvir - whoa!

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Small update. I am at the 4 month mark, and am trying to have an EBV flare. I had noticed that I was feeling more tired, then my throat started to hurt and my glands enlarged.

I don't know why, but it tends to flare every year in late January, early February. Indeed my first inkling that I felt unwell was February 2011, when I could still bike 10 miles a day and run 5 miles. 7 years later, and I doubt I will ever run again.

Anyway, I hope the virus comes out of latency, fails to replicate, and gets its ass kicked by my immune system. I am trying to get extra rest and really listen to my body.

I had wondered why I didn't have the energy surge at 3.5 months that Lerner predicts, and this flare up explains why I was feeling worse rather than better.
 
Messages
32
Location
New Salem, Massachusetts
Sorry to hear this. Perhaps you didn’t get the energy boost at 3.5 months because you’re not on the high dose of antivirals that Lerner recommended? Maybe consider adding monolaurin and/or L-Lysine. It also may be that you are rundown for some other reason...cold, flu etc. The same thing happened to me after two years on Famvir 1500mg daily. So my doctor switched to Valtrex, and I’ve had some benefit. Now I’m in the process of adding monolaurin. Having wicked herx, so it must be hitting something that the Valtrex and Famvir didn’t. Herx always makes me hopeful.
The fact that you relapse in late winter makes me wonder about your vitamin D levels. Hope you recover from this flare soon.
 
Messages
20
Updating. I am 2 solid months into Famvir. The herx symptoms have gone away. I had labs done and my liver is perfectly happy.

The sickly feeling is subsiding and my glands and sore throat are mostly gone. My air hunger is alot better. Palps are also not bad, I don't notice them when I am up and moving very often.

The best part so far is I have had two separate episodes of having two days in a row where I feel pretty normal energetically. I had two days just before Thanksgiving, and two days this week. It doesn't last, but its giving me hope. I am trying so hard to mind my pacing and not crash on those days.

I restarted methylation this week. I had discontinued it in summer when I was very ill and it made heart and sleep issues worse.

I have been able to start walking a little farther some days and even walking up a small hill. Not every day, but on weekends. I am tentatively starting to feel like I can build back up ever so slowly instead of going backwards.

I am a long ways from pre crash last winter, going to the gym 3x a week to lift weights and unlimited walking. Hopefully will get back there eventually.

Hello my name is natalia and I was wondering how you have been since your post. Are you still on
Famciclovir?
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Thanks, I do already take Lysine and C daily, and olive leaf extract. I had added some Lauricidin and Cat's Claw when symptoms started. I also increased my Famvir temporarily.

I have flared in this exact time period so many times now that I think there is some environmental trigger. Last year my flare stared on Feb. 2.

I am not unhappy that the virus is trying to come out of latency, but I do hope it will not result in a lengthy illness. If my system needs more help, I will ask my doc to raise my Famvir dose.

This is my first real test of how my body handles a flare while on AVs and I am very interested to see what happens next.
 
Messages
20
Thanks, I do already take Lysine and C daily, and olive leaf extract. I had added some Lauricidin and Cat's Claw when symptoms started. I also increased my Famvir temporarily.

I have flared in this exact time period so many times now that I think there is some environmental trigger. Last year my flare stared on Feb. 2.

I am not unhappy that the virus is trying to come out of latency, but I do hope it will not result in a lengthy illness. If my system needs more help, I will ask my doc to raise my Famvir dose.

This is my first real test of how my body handles a flare while on AVs and I am very interested to see what happens next.
At the beginning of
Famciclovir did you feel terrible?
 
Messages
32
Location
New Salem, Massachusetts
Thanks, I do already take Lysine and C daily, and olive leaf extract. I had added some Lauricidin and Cat's Claw when symptoms started. I also increased my Famvir temporarily.

I have flared in this exact time period so many times now that I think there is some environmental trigger. Last year my flare stared on Feb. 2.

I am not unhappy that the virus is trying to come out of latency, but I do hope it will not result in a lengthy illness. If my system needs more help, I will ask my doc to raise my Famvir dose.

This is my first real test of how my body handles a flare while on AVs and I am very interested to see what happens next.
Please keep us posted.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
My understanding is the only way the immune system can kill infected cells it is when it comes out of latency in those cells. Which is why it takes so long for AV's to work - they prevent viral replication but can't kill it.

If things are working as they should, my symptoms should be from my body detecting and actively killing virused cells. If it can't kill it even with reduced viral load, then I have another problem to suss out.

Hence I am not unhappy about the small flare as I consider it a necessity to clear the virused cells out.
 
Messages
20
My understanding is the only way the immune system can kill infected cells it is when it comes out of latency in those cells. Which is why it takes so long for AV's to work - they prevent viral replication but can't kill it.

If things are working as they should, my symptoms should be from my body detecting and actively killing virused cells. If it can't kill it even with reduced viral load, then I have another problem to suss out.

Hence I am not unhappy about the small flare as I consider it a necessity to clear the virused cells out.
Has
Famciclovir been good for you though?
 
Messages
32
Location
New Salem, Massachusetts
I did, I do apologize for i am disoriented from having started
Famciclovir and I feel absolutely heartbroken that it’s been doing so much bad to me :(
Start at the lowest possible dose, then very gradually work your way up. It took me 2 months to work up to 4grams of Valtrex. It can be a very slow and unpleasant process. But worth it if you get benefits. Best wishes
 
Messages
32
Location
New Salem, Massachusetts
My understanding is the only way the immune system can kill infected cells it is when it comes out of latency in those cells. Which is why it takes so long for AV's to work - they prevent viral replication but can't kill it.

If things are working as they should, my symptoms should be from my body detecting and actively killing virused cells. If it can't kill it even with reduced viral load, then I have another problem to suss out.

Hence I am not unhappy about the small flare as I consider it a necessity to clear the virused cells out.
Oh I see! I knew that antivirals don’t actually kill viruses, they just encapsulate them and prevent them from replicating. Sadly, I’ve given up on the capacity of my immune system to kill them. Although it did do a good job of keeping it in check for 8 years after many months on high dose Valcyte.
 

JES

Senior Member
Messages
1,324
Yep, and the way these antivirals work means it takes several months, sometimes even over a year to get the benefit from antiviral effect alone (the couple of stories I have read have been noticing improvement around the 3 month mark). The negative reaction you get is probably not from killing of anything, but due to immune system modulation. I get a massive reaction from Valtrex, I cannot sleep on it and my nervous system goes to some kind of overdrive mode. Impossible for me to take it for more than a week or so.
 
Messages
20
Yep, and the way these antivirals work means it takes several months, sometimes even over a year to get the benefit from antiviral effect alone (the couple of stories I have read have been noticing improvement around the 3 month mark). The negative reaction you get is probably not from killing of anything, but due to immune system modulation. I get a massive reaction from Valtrex, I cannot sleep on it and my nervous system goes to some kind of overdrive mode. Impossible for me to take it for more than a week or so.
So how do you go about treating your symptoms if you can’t take it for more than a week?
 
Messages
32
Location
New Salem, Massachusetts
Yep, and the way these antivirals work means it takes several months, sometimes even over a year to get the benefit from antiviral effect alone (the couple of stories I have read have been noticing improvement around the 3 month mark). The negative reaction you get is probably not from killing of anything, but due to immune system modulation. I get a massive reaction from Valtrex, I cannot sleep on it and my nervous system goes to some kind of overdrive mode. Impossible for me to take it for more than a week or so.
Wow, was that even on a very low dose?
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I have noticed Famvir causing some sort of nervous system up regulation, causing the pounding heart and sleep issues. Feels like higher adrenaline or something.

The sore throat and glands definitely feels viral. I was sure I had caught a cold or the flu, but as with my previous flare ups, it never develops into a normal cold or flu.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I though I'd post an incremental update.

First, my viral symptoms seem to have abated after just a couple of weeks! The sore throat is better, the glands are shrinking. Usually when I have a flare this time of year, it lasts for months and months. This has been the shortest one ever! I am trying not to get my hopes up that I won't relapse this year, but it's a little hard not to think about it.

Second, I had started low carb Jan. 1, and also started methylation around the same time and had not been feeling the greatest energy wise. Lately I started having PVCs (premature ventricular contractions - really uncomfortable palps) and some air hunger. After some research, I decided to try taking the high dose potassium tablets my doctor prescribed ages ago, and they are really helping! PVC's stopped, air hunger is a LOT better.

I had lowered my thyroid med dose of T3 due to the PVC's and high heart rate, but hopefully now I can bump that back up a titch as it helps energetically.

So all in all, if Famvir really did cut this flare up short after 2 weeks, its a huge success for me that I'm up and walking around and back on track.
 
Messages
32
Location
New Salem, Massachusetts
I though I'd post an incremental update.

First, my viral symptoms seem to have abated after just a couple of weeks! The sore throat is better, the glands are shrinking. Usually when I have a flare this time of year, it lasts for months and months. This has been the shortest one ever! I am trying not to get my hopes up that I won't relapse this year, but it's a little hard not to think about it.

Second, I had started low carb Jan. 1, and also started methylation around the same time and had not been feeling the greatest energy wise. Lately I started having PVCs (premature ventricular contractions - really uncomfortable palps) and some air hunger. After some research, I decided to try taking the high dose potassium tablets my doctor prescribed ages ago, and they are really helping! PVC's stopped, air hunger is a LOT better.

I had lowered my thyroid med dose of T3 due to the PVC's and high heart rate, but hopefully now I can bump that back up a titch as it helps energetically.

So all in all, if Famvir really did cut this flare up short after 2 weeks, its a huge success for me that I'm up and walking around and back on track.
Great news! Thanks for letting us know.