Famvir or not?

[godlovesatrier]

Realised I've replied to the wrong thread woops. Anyway if you're taking things as part of a regime to treat pillars of ME disease pathology you should see improvement. The issue is when you're only treating one area it doesn't have a huge effect.

Good luck titrating back up

 

[L'engle]

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.)

Yes I have found it had that effect of helping dry mouth over night. I haven't taken it very much so I can't give any proper warning about long term use. It does seem powerful so be careful.

 

[Judee]

I haven't gone back on my Famvir since I am having dental issues right now. However, I just realized I had 2x (maybe 3) where my BB on my Garmin watch got to 100% when I was on it.

That has only happened 4 maybe 5x since I got the watch about 2.5 years ago.

I just haven't wanted to go back on it again because it stirs up my parotid glands which are in the same area where my teeth are causing me pain. Not sure I can take both happening at once right now.

I do want to try to go back on it again though at some point since considering this makes me think it was doing something.

 

[Hoosierfans]

Hey all — wanted to pop in here as there are some folks experienced w Famvir. My PCP and I are considering trying the Pridgen Protocol (Famvir + Celebrex) for my symptoms. I’m post viral onset (EBV) but may also have HHV-6, HSV-1 and Coxsackie B. We are re running my viral titers as they haven’t been done in a few years.

Curious what to expect from Famvir. I briefly tried antivirals with a different doc but we did very low doses (500 mg 2 x day of Valtrex) for a short period of time (6 weeks). They helped a bit but then stopped…and by then I was on to a different doc to pursue IVIG.

If you look at my symptoms, they scream a herpesvirus infecting my nerves — tons of neuro issues, POTS, and what feels like shingles everywhere, but without the rash.

So we are discussing Famvir in earnest since it seems to be helpful for pain patients…and Meneires patients (I don’t have Meneires but do have constant dizziness that goes hand in hand w the nerve burning).

Would love any feedback….cheers!

 

[heapsreal]

Hey all — wanted to pop in here as there are some folks experienced w Famvir. My PCP and I are considering trying the Pridgen Protocol (Famvir + Celebrex) for my symptoms. I’m post viral onset (EBV) but may also have HHV-6, HSV-1 and Coxsackie B. We are re running my viral titers as they haven’t been done in a few years.

Curious what to expect from Famvir. I briefly tried antivirals with a different doc but we did very low doses (500 mg 2 x day of Valtrex) for a short period of time (6 weeks). They helped a bit but then stopped…and by then I was on to a different doc to pursue IVIG.

If you look at my symptoms, they scream a herpesvirus infecting my nerves — tons of neuro issues, POTS, and what feels like shingles everywhere, but without the rash.

So we are discussing Famvir in earnest since it seems to be helpful for pain patients…and Meneires patients (I don’t have Meneires but do have constant dizziness that goes hand in hand w the nerve burning).

Would love any feedback….cheers!

All you can do is give it a try. I'd say give it 3 months before coming to any conclusions though.

My personal experience is I need to continually stay on it, which has basically been since 2009. A few periods where I've been off for different reasons and relapsed when off, rather quickly.

Good luck.

 

[Hoosierfans]

All you can do is give it a try. I'd say give it 3 months before coming to any conclusions though.

My personal experience is I need to continually stay on it, which has basically been since 2009. A few periods where I've been off for different reasons and relapsed when off, rather quickly.

Good luck.

Thanks Heaps. I appreciate your posts here and feedback.

I’m really hopeful that it will help, at least in part. I’ve often described the burning pain I have all over as “shingles without the rash”. It’s torture and it’s 24/7. Unfortunately I’ve been through loads of painkillers but they tank my BP and make my POTs worse, so I can’t take them. I’m hoping by hitting it at the source with the antivirals and then doing whatever I can to tampen down the neuroinflammation —I’ll get somewhere.

Up until now I’ve tried lots of nueroinflammation supplements like high dose Cercumin, PEA, LDN and they don’t work — I wonder if it’s because I need to hit the virus and the inflammation at the same time ( ie trying to tamped down the neuroinflammation while the virus is active / making noise is like pouring water on a fire when someone else is also adding gasoline).

 

[heapsreal]

Thanks Heaps. I appreciate your posts here and feedback.

I’m really hopeful that it will help, at least in part. I’ve often described the burning pain I have all over as “shingles without the rash”. It’s torture and it’s 24/7. Unfortunately I’ve been through loads of painkillers but they tank my BP and make my POTs worse, so I can’t take them. I’m hoping by hitting it at the source with the antivirals and then doing whatever I can to tampen down the neuroinflammation —I’ll get somewhere.

Up until now I’ve tried lots of nueroinflammation supplements like high dose Cercumin, PEA, LDN and they don’t work — I wonder if it’s because I need to hit the virus and the inflammation at the same time ( ie trying to tamped down the neuroinflammation while the virus is active / making noise is like pouring water on a fire when someone else is also adding gasoline).

I understand. I have chronic reoccurring shingles on my head as well as cmv which I think famvir helps with.

For neuro pain you could try Benfotiamine which is a fat soluble form of vitamin b1, 150mg a day i found enough. If not needle shy, b12 injections can be helpful for neuroinflammation also, worth talking to your Dr about. They might help while you give the antivirals time to work. Hydroxocobalamine b12 form is probably better than cynocobalamine form if you try the b12. Alpha lipoic acid is also used for nerve pain.

Something else that may help speed up getting the viruses under control is cycloferon. It is an interferon inducer which has antiviral properties but also can increase natural killer cell function. Worth looking into.
https://cosmicnootropic.com/products/cycloferon/
If you can find a good affordable source of immunovir it could be used instead but I find it hard to source compared to cycloferon.

 

[Hoosierfans]

(Cross posted)

Ok, so call me shocked. I had an appointment with my allergist / immunologist today (the doc who prescribed IVIG last year) and came away with the following recommendations:

1. Trial of albumin, 1 x week for 4 weeks for hypotension / hypovolemia / POTS

2. Go get the shingles vaccine (thanks all here who suggested it)

3. Talk w my autonomic neuro about doing plasmapheresis, to try and rid my body of all the GPCR antibodies (my doc was up to speed on Prusty’s research and all the docs in Germany doing plasmapheresis / a pheresis for LC, and he even started discussing WASF3 (!))

4. Script for Famvir, 500 mg 3 x day for the “probably smouldering shingles with out a rash”

It's also noteworthy that shingles can occur without a rash too. (https://www.medicalnewstoday.com/articles/321217#_noHeaderPrefixedContent)

Thanks @Treeman for letting me know such a thing exists. It’s exactly what my pain feels like. It’s horrible and 24/7 and all over my arms, legs and face (yeah typically shingles is one sided so this would be a weird presentation).

My doc def believes in the “smouldering viruses” theory and thinks this may be why my pain has been so severe and gone on for 5 years now with no let up.

Let’s hope the Famvir knocks it down, and then insurance let’s me do plasmapheresis for all the nasty antibodies I’ve got swimming around.

Anything I should know about starting Famvir? My doc prescribed 500 mg 3 x day. Knowing im sensitive, im kind of contemplating doing 250 mg 3 x week and then bumping up. Thoughts??

 

[Judee]

Maybe start with 125mg the first day and slowly build from there. I think that's what badbadbear (?) did.

 

[Hoosierfans]

Hey all — any ideas here? I started Famvir two weeks ago, roughly. First few days of 250 mg 3 x day gave me pretty significant relief from my 9/10 burning pain, dizziness, fatigue etc. Probably 40% overall improvement in my condition (I’m mostly bedboubd).

Then it stopped and hasn’t done much since. All symptoms returned. I’m gonna bump up to 500 mg 2 x day and see what happens.

Interestingly, after I started the Famvir, I got my viral labs back. EBV is reactivated. No active HSV 1 or 2 or Varicella zoster, and IGGs for those weren’t crazy high (unlike EBV IGG which is through the roof).

We started this with the idea that I was having “shingles without the rash” or maybe shouldering HSV-1 (due to the burning pain). I’m seeing different views on whether Famvir hits EBV.

What would you ask from your doc? Switch to something else (like high dose Valgancyclovir or TAF)? Or keep going with the Famvir?