Famvir or not?

[Judee]

EBV is expressed in the saliva, so there may be a link.

I did have Mono when I was about 12 and I don't remember how the doctor tested for that so I've always thought it's possible that I do also have EBV but it didn't show on testing on one test in later years so maybe it's in hiding which I've read it can do. ??

Talking about saliva...this was really interesting and maybe it was posted on the site recently by someone so you may have seen it already: https://www.frontiersin.org/articles/10.3389/fimmu.2022.949787/full

Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with myalgic-encephalomyelitis/chronic fatigue syndrome​

I believe for me it has helped cmv as shown by lower cd8 lymphocytes.

Was it a test like this: https://www.walkinlab.com/products/view/cd4-cd8-ratio-profile-blood-test

I don't know if I could afford to take it but just wondered.

Edit: Oh, I should ask if you remember having a similar reaction in the beginning when you started any of the antivirals that have benefited you?

 

[godlovesatrier]

I got tonsillitis on famvir lasted 2 days - wasn't the real deal and then went - convined it was ebv dying. EBV does this btw it's proven in studies, it creates a non productive infection where it produces part of the protein chain required for replication but not the full chain, so you get symptoms of ebv but it's not actually ebv - really fascinating stuff.

As Heaps said Dr Lerner proved with thousands of patients that responders to valtrex would feel a lot sicker for the first 3 months, with worsened syncopy, malaise and fatigue. In my case this was true, my fatigue worsens briefly - for maybe a week - neurologically I get worse brainfog for about 3 to 4 weeks. Then after that I do feel a "a bit" better.

I crashed in March and due to kidney issues I've had to stop valtrex as it makes my kidney pain a lot worse. But I now believe that my 90% functional level (which I am still really shocked about) with a fully treated hpa dysfunction was due to 12 weeks of 1g valtrex per day. However it could have been due to increased reishi dose as well - my microbiome also looked healthy for the first time in 2 years at the same time. So I have a lot of work to do to unpick all this.

But if you tolerate famvir and are having viral symptoms I'd stay on it, for six months, try not to second guess it before then.

 

[heapsreal]

I did have Mono when I was about 12 and I don't remember how the doctor tested for that so I've always thought it's possible that I do also have EBV but it didn't show on testing on one test in later years so maybe it's in hiding which I've read it can do. ??

Talking about saliva...this was really interesting and maybe it was posted on the site recently by someone so you may have seen it already: https://www.frontiersin.org/articles/10.3389/fimmu.2022.949787/full

Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with myalgic-encephalomyelitis/chronic fatigue syndrome​

Was it a test like this: https://www.walkinlab.com/products/view/cd4-cd8-ratio-profile-blood-test

I don't know if I could afford to take it but just wondered.

Edit: Oh, I should ask if you remember having a similar reaction in the beginning when you started any of the antivirals that have benefited you?

When I've had lymphocyte subset testing done they test the number of different cd T cells and also do a cd4/cd8 ratio.

Cd8 is non specific but is elevated during active herpes infections. I mentioned it once before but was only able to get an actual cmv igg titre level tested once and it would be considered high going by Dr Lerners standards. I saw my cd8 numbers come down significantly with famvir but rarely into normal range though.

The last 8 years, using cd8 for me to track cmv would be accurate now as I also get regular varicella/shingles reactivation every couple of months which would probably increase my cd8 count. Although the shingles has been good of late.

I didn't have any negative reactions at all to valtrex or famvir. Valcyte was a different story and took me a few goes before I could tolerate it. It's a rough ride.

 

[Judee]

I'm still getting what I think is immune activation in paratid and other salivary glands as well as crimson crescents. Adding a 1/4 tablet of andrographis midday in addition to the morning and evening Famvir doses seems to make that reaction a bit stronger.

It's day 18 now for me on the Famvir. I'm extra tired but that may also be from the low dose (12.5mg) Metoprolol Succinate ER I'm taking.

 

[godlovesatrier]

Nice

Did I tell you I got this weird tonsillitis when I took famvir for about 3 days and then it vanished? My tonsils have felt loads better ever since that happened and I haven't had tonsillitis once.

Famvir herx made me very tired. It's amazing it doesn't keep you awake tho jesus it gives me brutal insomnia. Which is why I can't take it sadly.

I guess in 3 months you'll know if it's helped. What level of function are you these days judee?

 

[Judee]

I'm was moderate to severe but I think in the last couple of years that has moved more towards severe so I'm really hoping as I get towards the 3 month mark, I'll be able to feel some improvement.

 

[heapsreal]

I'm was moderate to severe but I think in the last couple of years that has moved more towards severe so I'm really hoping as I get towards the 3 month mark, I'll be able to feel some improvement.

My first 3 months I didn't notice anything like more energy etc but I did realise I hadn't had my usual cfs crashes that I'd get every few weeks.

I remember thinking a normal person who gets glandular fever/mono can take 3 months to feel better but that's a normal person. We are starting from a different level.

It's hard to monitor how we are functioning as we are so up and down normally. Honestly for me it wasn't until the 6 month mark that I noticed improvements, which probably happened from not crashing all the time. It was the not crashing and seeing my elevated t cells start to come down that kept me going.

It's hard to know when to call quits. Sometimes it takes stopping a treatment to notice the benefits if any you may have been getting from it.

Good luck

 

[Judee]

@heapsreal and @godlovesatrier do you think it's okay to go off the Famvir for about 5 days? I'm having a NASA standing test done on Tuesday and a 48 hour Holter test that starts on Wednesday.

I just don't want anything to give me a false negative.

???

 

[heapsreal]

@heapsreal and @godlovesatrier do you think it's okay to go off the Famvir for about 5 days? I'm having a NASA standing test done on Tuesday and a 48 hour Holter test that starts on Wednesday.

I just don't want anything to give me a false negative.

???

I wouldn't think it would matter but also don't think it would interfere with the tests your getting done.
For me I wouldn't do it only because of my reoccurring shingles, which has comeback with a vengeance in such a short time period of stopping famvir. I wouldn't think ebv, cmv would hit back so quickly though but I can't be certain??
Do you feel you have made progress on famvir in the short time on them??

 

[Judee]

Do you feel you have made progress on famvir in the short time on them??

Idk. I'm still so completely exhausted all the time.

However, between Famvir and the extended release beta blocker I was taking, my Garmin watch tracking numbers were improving. It seemed like the numbers would bounce back more quickly too when I rested even after some exertion.

They were already improving with the beta blocker but when I added the Famvir they seemed to improve even more making me think rest was becoming more effective.

Plus, I still am getting immune activation with the swollen glands in my face and neck.

???

 

[heapsreal]

Idk. I'm still so completely exhausted all the time.

However, between Famvir and the extended release beta blocker I was taking, my Garmin watch tracking numbers were improving. It seemed like the numbers would bounce back more quickly too when I rested even after some exertion.

They were already improving with the beta blocker but when I added the Famvir they seemed to improve even more making me think rest was becoming more effective.

Plus, I still am getting immune activation with the swollen glands in my face and neck.

???

I think taking 5 days off might be interesting to see if things change. May let you know if it's helping or not??

 

[Judee]

I think taking 5 days off might be interesting to see if things change. May let you know if it's helping or not??

So I'm probably driving you crazy going back and forth this way...drives me crazy too, but I just wanted to update you and ask about hypersomnolence.

I think I decided you're right about it not affecting the testing (at least the Holter) as I'm still getting arrythmias while on the Famvir.

So I still took a dose today. I didn't want to go too long without it but I think I will wait until after tomorrow's test to take the next dose. I just don't want to give the virus a chance to get strong again if the medication is working for me.

Also do you think hypersomnolence is a good sign? I had two 8-hour nights of sleep* but still needing several naps each day now too. I feel like I need another one right now.

*I took Benedryl (tiny dose) as usually before going to bed but didn't have to take any when I woke mid cycle again. I just went right back to sleep which is how I used to be.

I always used to be someone who could fall asleep in 5 minutes or less but the last few years that changed and I've had to fight to fall asleep. So I hope at least that part seems like I'm going back to where I was before and maybe a positive.

But the hypersomnolence is new, pretty much since I started the Famvir = negative???

What do you think? Or could the hypersomnolence be a sign of healing? I'm hoping.

 

[heapsreal]

So I'm probably driving you crazy going back and forth this way...drives me crazy too, but I just wanted to update you and ask about hypersomnolence.

I think I decided you're right about it not affecting the testing (at least the Holter) as I'm still getting arrythmias while on the Famvir.

So I still took a dose today. I didn't want to go too long without it but I think I will wait until after tomorrow's test to take the next dose. I just don't want to give the virus a chance to get strong again if the medication is working for me.

Also do you think hypersomnolence is a good sign? I had two 8-hour nights of sleep* but still needing several naps each day now too. I feel like I need another one right now.

*I took Benedryl (tiny dose) as usually before going to bed but didn't have to take any when I woke mid cycle again. I just went right back to sleep which is how I used to be.

I always used to be someone who could fall asleep in 5 minutes or less but the last few years that changed and I've had to fight to fall asleep. So I hope at least that part seems like I'm going back to where I was before and maybe a positive.

But the hypersomnolence is new, pretty much since I started the Famvir = negative???

What do you think? Or could the hypersomnolence be a sign of healing? I'm hoping.

Could be a good sign. Your body wanting to recover????
I think alot of sleep disturbances in cfsme can be related to inflammatory cytokines from the immune system fighting infections. Maybe, just maybe your viral load is coming down, so less inflammatory cytokines being produced to disrupt sleep????

 

[Inez]

I'm experiencing a major crash after 6 weeks on famvir. I didn't have much of a herx to begin with but now I'm at the time point that I'm supposed to start feeling better and I feel worse...is it possible to herx after 6 weeks?

 

[Judee]

I'm supposed to start feeling better and I feel worse...is it possible to herx after 6 weeks?

Did you add anything like maybe even an herbal? If I take Andrographis (even just a 1/4 pill) with the Famvir, I get a stronger immune reaction.

Also what dose are you using? Because of finances I'm only taking 250mg x2 a day which may also be keeping any reactions down a bit.

~~~

I also wanted to give an update on my antiviral usage.

When I reordered one time, I did add some Valaciclovir to my order (just 6 pills) just to lower the shipping. I figured I'd use those extra pills if the shipping for the next order of Famvir was slow which is what is happening now.

However, I'm finding that anytime I take one of the Valaciclovir I get a much stronger immune reaction.

I'm wondering now if I should have started with that med instead though the reaction is really hard to live with. It's the same reaction as the Famvir (sore jaw/salivary glands) but dialed way up and really painful.

One thing that makes me think that's a good thing though is my Garmin watch body battery reading was climbing like crazy today even with the pain.

I even got to 100% which is only about my 5th time that's happened within the last two years. 3 of the times have been within the last month while I've been on these antivirals. Otherwise, most of the time, I'm below 60% even with not much activity. With activity then I'm between 5-20%.

Edit: No additional energy though and brain fog is the same.

Edit #2: I forgot to add that I did go back on the beta blocker but it's timed release and I think it stays in my system longer than 24 hours so I've only been taking it eod to avoid the constant low bps and depression. It's my version of a happy medium. (The beta blockers lower my hr which also helps some with the body battery reading but I didn't get to 100% again until I went on the antivirals.)

 

[godlovesatrier]

sounds like those tissues are full of hsv1 or another valtrex acting virus, but the compounding on valtrex india is absolutely horrendous so you could also be reacting to a bad compound. If I take valtrex from india I get strange pains in my body and generalised hip pain that haven't had in 2 years of taking european valtrex. So bare that in mind.

I do herx on valtrex tho for about a month if I have to take a break, and generally feel a bit better once it's over. I intend to stay on valtrex for life now, the benefits seem to be pretty huge. Although I am not currently at 90% like I was earlier in the year.

 

[Judee]

So I was in hospital so had to go off the antiviral and haven't been able to get back onto it yet. I feel a little worse but that could be because of dental infection and problems that is/was causing. It's also why I ended up in hospital. (Long story that I talk about here: https://forums.phoenixrising.me/threads/new-book-about-thirst-in-me-cfs.90710/#post-2442861)

So the feeling worse could be from crashing from that and subsequent dental appointment with still more to follow.

I think it's gonna take me at least another week to add it back in. I also may try a few other meds before that just so I'll know what's helping and what isn't.

Just wanted to give another update.

 

[heapsreal]

So I was in hospital so had to go off the antiviral and haven't been able to get back onto it yet. I feel a little worse but that could be because of dental infection and problems that is/was causing. It's also why I ended up in hospital. (Long story that I talk about here: https://forums.phoenixrising.me/threads/new-book-about-thirst-in-me-cfs.90710/#post-2442861)

So the feeling worse could be from crashing from that and subsequent dental appointment with still more to follow.

I think it's gonna take me at least another week to add it back in. I also may try a few other meds before that just so I'll know what's helping and what isn't.

Just wanted to give another update.

That sounds reasonable. You sound like you have a read on your body and symptoms but I understand where you are coming from as issues can overlap symptom wise. Similar to you, I've had a newish type episode of fatigue and I'd have problems distinguishing between a cfs/viral type crash, frontal sinusitis issues or a low sodium issue. It would take me a couple of days to work it out completely.

They all cause that initial intense fatigue but take a couple of days for other symptoms to play out. Eventually I worked out the low sodium was the most intense fatigue, literally fall asleep exhausted anywhere but maybe the easiest Eventually, to rule out and treat once I understood it. I'd just take a couple of Salt tablets and wait a couple of hrs and maybe take a couple more. Sometimes I'd automatically self regulate it and have a big salty carbohydrate mung out like a big packet of chips. I'd feel markedly better, than I'd realised, oh my body was telling me to eat/crave all that salt. Not a regular thing I eat as I usually eat low carb. I use to think it was a low sugar thing but then I realised it was more a low salt thing and the carbs help push the sodium into the system better.

So, keep following what your body tells you and you may need to give yourself some time to understand what it's trying to tell you. Going by your other post in the other thread, your getting a grasp on your sodium symptoms , which is good in that as you know, treat or rule it out first.

Good luck,

 

[godlovesatrier]

I think if it's having no discernible effect on fatigue and/or cognition it's worth stopping.

My dry mouth at night, choking at night, dehydration at night, sore throat and easily inflamed sore throat on exertion say talking a lot. All these symptoms disappear with valtrex. Reishi does help as well with the last symptom but not the others. Women according to research suffer far more from hhv-6 than they do ebv. So that might explain why it isn't working that well.

My current update is that I'm still pursuing microbiome treatments. I've replaced all my prebiotics with inulin and I've increased my dietary fibre intake as much as possible. Pomegrenates have 11g of fibre! Who knew.
The reason is that when I felt loads better at the start of this year my dietary fibre content was much higher and vastly more varied.

I also found another study today showing that long covid is much more likely in patients with weak microbiomes. But I'm convinced mines not as strong as it was when I got COVID last year because I was bouncing back from exertion much quicker last year. However that was due to a combination of glycine and sodium benzoate taken together. Essentially microbiome modulation can get me to a good place. But I'm still trying to figure out how best to do it therapeutically whilst dodging unpleasant side effects.

I tried the youth and earth spore forming probiotic again made up of bacillus subtilis hu58, clausii and coagulans and had a far less severe response this time but dizziness and brainfog are tons worse after taking it. Subtilis is part of remission biomes prep schedule hence the reason for retrying it.
I also need to retry trybutyrin which is also part of remission biomes prep protocol. Last time I took it I felt terrible

I still have no idea why I react so badly to things. But I do have it in common with so many pwme.

 

[Judee]

Eventually I worked out the low sodium was the most intense fatigue, literally fall asleep exhausted anywhere but maybe the easiest Eventually, to rule out and treat once I understood it. I'd just take a couple of Salt tablets and wait a couple of hrs and maybe take a couple more. Sometimes I'd automatically self regulate it and have a big salty carbohydrate mung out like a big packet of chips. I'd feel markedly better, than I'd realised, oh my body was telling me to eat/crave all that salt. Not a regular thing I eat as I usually eat low carb. I use to think it was a low sugar thing but then I realised it was more a low salt thing and the carbs help push the sodium into the system better.

I agree with you. I think the salt tablets are even improving my sleep the last couple of nights. I'm getting tired at normal bedtime hours and even though I may have one bathroom wake up in the night when I wake again, I can't believe it's morning already. That's how it used to be when I was a kid.

(I also did add a new kind of b12 capsules with just the methylcobalamin and cellulose in them. So that could be helping maybe. Ironlion37 talks about how liquid starts to degrade the methylcobalmin so I tried for something that wouldn't even be processed into lozenges.)

My dry mouth at night, choking at night, dehydration at night, sore throat and easily inflamed sore throat on exertion say talking a lot.

I think @L'engle mentioned goldenseal helping with dry mouth at night. ?? IIRC I think it also has some anti-viral or anti-microbial properties. I think it's in the ragweed family though so if you have an allergy be careful. ???
(This is all from off the top of my head memory. I'm sorry. I'm too tired right now to look it up but if you try some please research first so you won't react.)

I also need to retry trybutyrin which is also part of remission biomes prep protocol. Last time I took it I felt terrible

I did wonder about a butryate supplement. Someone on PR keeps mentioning it as part of studies but hasn't indicated so far whether he/she has actually tried it yet. ??