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Mestinon + Famvir - whoa!

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
So a minor update.

I am still mostly in 'remission'. I can't do aerobic activity, but can do a lot of regular stuff now. I can do whatever I need to during the day, if it doesn't involve too much walking or other aerobic exertion. For example, I can do a short slow hike up a steep grade IF I go really slow. I rest as needed the day after any near-aerobic effort. I can do a lot of busy work most days, and have packed my camper and gone camping a few times now by myself. Hadn't tried that since I've been ill, but its going well and have gone for a week to visit my aunt. I can drive myself up to about 175 miles in a day (with frequent stops to get out and move).

I had been having problems with DOMS (delayed onset muscle soreness, sore muscles for a few days after any new type of exertion like walking farther than normal). The PEM is gone, but the DOMS was not pleasant. I read a study on curcumin's ability to alleviate muscle soreness and have been trying it, and it seems to completely eradicate the DOMS. Curcumin has made me want to try doing a bit more than I was doing, since there's less payback. I have not had a very long trial of it, so we'll see if the effect can last.

I am still taking inositol and it still has positive effects. The hypomania has subsided for the most part. I have had to decrease my dose as it was too energizing for good sleep, so now I'm taking a half tsp AM, quarter tsp at noon, and none the rest of the day. It seems to be 'enough'.

Overall my sleep has improved, though, which I think is also related to inositol vastly improving everything else. I don't need melatonin or any sleep supplements anymore, and I sleep all night.

I notice other things like being able to digest starch better and I feel like my gut is functioning better overall.

Add to that, I'm still decreasing my thyroid meds. I've gone from T3 only to Armour + T4 to T4 only, and now I'm decreasing my dose of T4. I'm down from 125 mcg to 75 mcg. My FT3 is at a great level, and I'm curious to see how my next labs look with this current decrease to 75 mcg.

I feel like my body is still making slow, steady improvements. I am looking ahead and thinking I may try going off of Famvir at some point to see if I can maintain. My doc wants me to try LDN at some point, and I think if I can stabilize on that, either late this year or early next, I'll try taking a break from the Famvir if things go well.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Well, I have come full circle back to this post. :) My update is as follows:

- my thyroid labs have normalized and I'm off of all thyroid meds. Started them in 2013 for low T3 syndrome, finished my very slow taper off about 6 weeks ago and my labs are really good. I am making a LOT of T3 now. I think the inositol/selenium protocol made a huge difference there in addition to decreasing viral titers with Famvir.

- I am on ~3mg of LDN per day. That is working well and helping my energy levels. I had to start really low on it and am still working up slowly, but it has gotten better with the last couple of increases.

- I still need Celebrex in the PM or I get restless leg type of symptoms at night.

- I am back on Mestonin and having some testing done to see if I developed Myasthenia Gravis from my EBV infection. Thankfully my blood pressure is high enough now to handle the drop that Mestonin provokes - my BP is currently around 102/60 while on Mestonin. My BP was much worse prior to my Famvir treatment and I have slowly gained ground on maintaining an OK BP.

- I am completely off of Famvir and not having EBV sickness issues. I do have a large stash in case I need it in the winter.

I am still not cured. That said, I am doing extremely well. My activity level is hovering around 85% of normal. I can do a full morning of activity. I still often need to rest during the day, and sometimes need to sleep.

I still get short of breath at odd times and have muscle cramping, soreness, etc. which is the reason I asked my doc if I could try Mestonin again. Mestonin makes it so I can sit at the computer and work without being short of breath. The air hunger seems positional, the more upright I am the harder it is to breathe. I notice it if I stand still and upright, or if I drive, or sit at the computer (I have good posture at the computer and while driving).

I have stuck with Egoscue and have gotten stronger and my overall posture is much better, but if anything, my breathing issues have been highlighted so now we are looking at MG as a possible cause. I am waiting on labs to come back.

My sleep has truly gotten excellent and restorative, I am only taking melatonin for it now. Anything else results in being tooo groggy in the AM.

I tolerate an occasional short bout of intense effort like an occasional short run (like 50' which used to make me bedridden). I have not pushed the aerobic envelope, but am able to have a really short burst of it now and then and not have major paybacks.

The DOMS has been a lot better lately. LDN seems to have helped. Egoscue helps.

So that's my almost 2 year update (it will be 2 years in Oct. since I started Famvir and truly started to get better).
 

godlovesatrier

Senior Member
Messages
2,561
Location
United Kingdom
Really interesting @Tammy

I'm just about to try mestinon. Hrv is definitely higher for 4 hours on famvir but it's got a lot better over time. Still one dose raises hrv for ages.

Hoping mestinon will stop the severe dizziness I experience when driving/walking and increase my energy envelope. Famvir just seems to stop fatigue and sore throat + some other viral type symptkms.
 

Tammy

Senior Member
Messages
2,197
Location
New Mexico
Really interesting @Tammy

I'm just about to try mestinon. Hrv is definitely higher for 4 hours on famvir but it's got a lot better over time. Still one dose raises hrv for ages.

Hoping mestinon will stop the severe dizziness I experience when driving/walking and increase my energy envelope. Famvir just seems to stop fatigue and sore throat + some other viral type symptkms.

@godlovesatrier.................not sure you meant to tag me? I'm not familiar with this thread.
 

godlovesatrier

Senior Member
Messages
2,561
Location
United Kingdom
Funnily enough I've noticed the same issues as badbadbear on the Joshua Leisk protocol.

I have a reactivation between January and March. I have sore throat February to April which seems partly pollen partly something else. Then from the end of May i acclimatise to the pollen. Then from June to October ( last year) experience a very good level of function. But do need to gather more data this year.

I've been on antivirals for about 6 weeks solid. Mix of valtrex and famvir. I had tonsillitis day 8 on famvir. After a 2 day break my sore throat effectively went away and I felt a little better but was still herxing like a son of a gun on the famvir.
I tried valtrex for a week which got rid of some remaining virus in my neck front and back. Globulus sensation in throat disappeared also. I experienced improvements with dry mouth and canker sores within days of starting famvir but didn't notice the same thing with valtrex.
I didn't tolerate the valtrex it gave me renal calculi - a CT scan in hospital showed calculi in my kidneys very tiny but enough to cause swelling and very bad aching in both flanks after food and water.

I restarted Famvir 2 days ago after a fainting spell and strangely felt better 24 hours after my first dose.

Famvir also gives me insomnia same as the poster and raised hrv. Which is interesting.

I have noticed improvements in energy and the like but I've also noticed reactivations occur quite easily after only so much exertion. I have tried higher doses of famvir but they make me so sleepy and fogged I can't get anything done (I still work).

Anyway I find it interesting how similair I am to the poster! Hoping mestinon may get me a bit further along with dizziness symptoms which could be dysautonomia.