Mestinon + Famvir - whoa!

[BadBadBear]

Update at about 4.5 months.

Just had labs done, and liver enzymes were fine. It ended up my potassium levels are fine, but sodium was unfortunately even lower than usual, and I'm nearly into hyponatremia. I doubled down on taking my salt 3x a day, and hopefully it will rebound. That is likely the cause of the PVC's.

Of interest, my MPV (mean platelet value) is up to normal for the first time in years. My albumin level has rebounded after being chronically low. And my vitamin D status is finally excellent. My body seems to be building up resources that have been chronically depleted. More of my labs are matching up to the labs I had from before I was sick, which is great.

My white cell count was always depressed from chronic infection, and it is creeping upward a bit at the high end of the 5.x range. Hopefully my immune system is sharpening its knives and slaying some viruses.

I also had to lower my thyroid meds again due to it causing over-stimulation. I started at being stable on 75 mcg of T3 for years, and after several reductions, am now at 50 mcg. My doctor posits that my body is not needing as much of it due to the viral storm quieting down.

Anyway, due to the overstimulation I've had for the few weeks, I had cut out all supplements and medicine except T3 and Famvir. I did decrease Famvir to 750 mg per day, and plan to stay at that level unless I have a flare - then I will go up to 1,500. I had planned to drop my dose during summer anyway as I don't ever seem to have flares then. I will likely drop to 500 mg per day in April - Oct., then back up to a higher dose in Fall and winter.

I am planning to add Mestonin back in as I sometimes feel bad in a way that I've come to associate with a need for a Mestonin dose. When I need it, my body feels very heavy and hard to move. Not fatigued, but I feel a distinct unbalanced heaviness in my chest and body.

I am not sure if I will resume methylation or not - I tend to overmethylate, and did not do well or sleep well with that overstimulated feeling. Maybe just add a methyl supp once a week and take dessicated liver as I feel I get enough B12 from that.

My energy is still not as high as I wish, but I'd say I'm getting about to where I was before I started Famvir (which was not great, because I was in a viral flare). But I'm inching upward. I have been able to sleep the last couple of nights and the overstimulation is subsiding.

I'll update again when I hit the end of my Famvir bottle or if something happens.

 

[BadBadBear]

I have just hit the end of a bottle of Famvir, and I now have 5 months under my belt (or will have on the 2nd).

I have mostly quit methylation, and am staying on reduced meds. My staples are thyroid med (T3), Famvir, CBD oil. I am taking Celebrex as needed for pain & inflammation, but no longer taking it proactively. I am taking a low dose of B vitamins, trace minerals, D, C, lysine.

My last labs revealed that my sodium level was worse than ever, and I read that Celebrex and NSAIDs can cause acid/base and electrolyte disturbances. Since this is one of my worst annoyances, I decided to cut back for a while and use CDB instead. So far that is going OK.

I have been off of Mestonin, and that is also going OK. Keeping up salt intake and fluids and electrolytes seems to help a lot in that regard.

Finally I think I may be having the "burst of energy" that is supposed to come at 3.5 months. The last few week or so, I've been feeling a crescendo of energy. I have been able to do extra daily activities, and am not paying dearly for it. Yesterday was my most active day since I was better in 2016 when I was able to do unlimited walking.

I have worked very gradually on my walking and my strength since my crash in Feb. of 2017, and I can now do my daily activities, go get groceries, and come home and walk dogs. I sometimes now saddle my horse and take her, walking as far as I can and then riding home before I get tired. This greatly helps me extend my walking range, just a little bit at a time. Yesterday I had a very exceptional 21,000 steps, though a good portion of them were on my horse's legs.

While I was sick last year, I did not do any extra walking and could not groom and saddle a horse. So I am slowly but surely starting to build up strength and endurance. I do not walk fast. I do not do anything that makes me breathe hard. If I get tired, I come into the house in my recliner and rest.

Today has been much easier and I am not pushing it, and I am at 10k steps which has been my normal amount lately (6k - 12k being pretty normal). So hopefully this is the energy increase, and hopefully I will be cognizant to not overdo it and let my body use some of that energy for healing. I hope that writing it here will encourage my brain to remember the limits this time.

 

[BadBadBear]

Minor update: I am having my second cold while on Famvir, thanks to DH being sick . I never had colds during my time with CFS until being on Famvir, my immune system is definitely shifting. This time, I had a head cold, lots of sneezing, and a fever. Crossing my fingers that my EBV won't kick back up!

 

[heapsreal]

Minor update: I am having my second cold while on Famvir, thanks to DH being sick . I never had colds during my time with CFS until being on Famvir, my immune system is definitely shifting. This time, I had a head cold, lots of sneezing, and a fever. Crossing my fingers that my EBV won't kick back up!

I found over time when i had a different viral infection like a cold and then my glands in my neck start to hurt. I will then increase my av dose for a couple of days. Sometimes i found it hard to tell if my cfs viruses are reactivating.

It was quite common for me when i had a sinus infection that cmv or shingles would reactivate and also vice versa. I would also attack the sinus infections with abx as soon as i noticed them coming on. I think dealing with another infection is enough to drop our immune function enough for other viruses to be triggered off.

 

[BadBadBear]

I found over time when i had a different viral infection like a cold and then my glands in my neck start to hurt. I will then increase my av dose for a couple of days. Sometimes i found it hard to tell if my cfs viruses are reactivating.

Hi @heapsreal ☺

I had wondered if there was some reactivation attempt going on, and did increase AVs a few days ago. My immune system is reacting pretty robustly for it to only be a cold virus.

That said, I am alot better today, day 4. I usually feel better overall after having fevers. I also had a couple of days of being curiously hypermetabolic, I ate everything in the house and didn't gain any weight. ☺ .It felt good, like an engine trying to turn on.

 

[SunMoonsStars]

@BadBadBear
So glad your pulling out of your flare. Nice to read a story where things are improving. I hope things keeping going in upward direction. I rate success on ability of number of steps a day too.
I’m way back to near none sadly 1000 at most 1 x a week. but used to be around 5000 about 5x a week. I think 10-12 is fabulous.!! That’s my goal.
Keep It going but be careful as we must !

 

[JayneM]

Thanks for posting these updates. I’ll be starting Famvir and Celebrex at the end of next week, so I’ll continue following your story. I hope you continue to see improvements.

 

[pattismith]

i am happy for you that your are really improving and started to lower T3.
It seems that your cells are more sensitive to it!

your success with Famvir gives much hopes, thank you for updating!

 

[BadBadBear]

My next small update is that I think I am indeed having a small reactivation, as @heapsreal suggested. The cold itself got better and was over, but I'm developing a sore throat, swollen glands, and fatigue (which I did not have with the cold).

I will update when/if the reactivation passes. I am taking care to sleep during the day, and spend a lot of time in the recliner at rest. I have cut my activity level way back. One step forward, two steps back for now.

Oh well, needed to re-watch Harry Potter.

 

[heapsreal]

My next small update is that I think I am indeed having a small reactivation, as @heapsreal suggested. The cold itself got better and was over, but I'm developing a sore throat, swollen glands, and fatigue (which I did not have with the cold).

I will update when/if the reactivation passes. I am taking care to sleep during the day, and spend a lot of time in the recliner at rest. I have cut my activity level way back. One step forward, two steps back for now.

Oh well, needed to re-watch Harry Potter.

Yep all you can do is outrest it, maybe add a couple of grams of lysine 3 times day may help. Its cheap enough to throw it into the mix.
Good your taking care of sleep as its more important now then ever during these stages.

 

[BadBadBear]

@heapsreal I like the idea of outresting it and have thought alot about that since you mentioned it! Seems like an oxymoron, but it's true.

Yesterday morning I woke up knowing that the worst of the fatigue from the little relapse was had past. I don't know how I knew, I just did. The sore throat and other physical manifestations had ended about a week ago, but the horrible weakness/fatigue lingered. I had dropped my walking and activities down to the bare minimum, and exceeding that amount made me feel like I was going to fall over dead.

Yesterday, some switch inside flipped and I was able to tolerate a good amount of activity, about a third of what I could tolerate before the cold and the reactivation. I was tired by the end of the day, but 'good' tired, not horrible tired. I was able to walk a mile at an unhurried pace with the dogs. I had not been walking with them at all, leaving it to DH.

I was also finally able to sleep really well last night - slept all night and only woke at 5 AM for my thyroid med, then back to sleep (no bathroom trips).

Today is mostly a rest day, tomorrow will be more busy and I'll see what I can do activity wise. It seems this reactivation also cleared in about 3 weeks from my first noticing the subtle signs. The reactivation in Feb. was similar. I have been sick most of Feb. and March, alas, but then it clears up for a while rather than continuously getting sicker.

I had hoped for longer remission periods, but I guess this tells me how heavily virused I am at this point. There seems to be a lot of immune system clean up work that needs done.

One observation is that for the second time, I have noticed that I am experiencing 'tiredness' as a side effect of Celebrex. It seems when I am reactivated, Celebrex B.I.D. helps alot. As the reactivation ends, there's a point where I feel excessively tired, and going off the morning dose of Celebrex improves that feeling. It is one of the listed but rare side effects of Celebrex. I am switching to bee propolis in the AM, and Celebrex for night time use only.

I also should note here that I'm finding CDB to be very useful. It has really helped with the anxiety of a relapse, and it's a great mood booster for me. I am using it 2x per day (+CDB brand). I am not having a lot of body soreness or 'coathanger' pain this time, and that might partially be the CDB.

 

[heapsreal]

also should note here that I'm finding CDB to be very useful.

Anything that can help you rest during a crash is good. I use to say have a valium sandwich and a lay down. The other thing i found helpful during a crash was b12 injection but not so much when not in a crash. Maybe it has a calming effect on the nervous system.

I guess i use to get pee'd off when in a crash and that doesnt help you rest. I learned to give up on getting angry and just think to myself, its time to rest and curl up in the fetal position with my valium sandwich.

 

[1gooddog]

In February, I had a severe EBV flare which made all my symptoms much worse. It especially bothered my heart. As a result, I ended up tapering off of Cytomel to see if the high heart rate would resolve. It did, but it threw me into low BP, low heart rate, but I still had shortness of breath and heart palpitations like mad (along with the full body constellation of symptoms).

My doc ended up letting me try Mestonin for the autonomic issues, but I immediately washed out of the trial because it sent my pulse and pressure even lower. I finally went back on Cytomel and the pulse and pressure stabilized (low but acceptable).

Next I decided to finally try Famvir, I've been on it ~4 weeks and am having some major discomfort with palps and shortness of breath. I am back to having high heart rate and a lot of discomfort. I have to split the Famvir into 250mg 4x per day to tolerate the heart effects.

I decided to trial Mestonin again 4 or 5 days ago - and WOW has that helped! I am only taking a quarter tab 4x per day with my Famvir. The high pulse is GONE. The palps are GONE. The insomnia is much better - I had been staying awake at night with a racing heart and now it is quiet at night and I'm sleeping all night!

There is a theater production that my husband loves to go to once a year (3 late nights, the only thing we ever go out to at night, LOL). I had planned to only go one night and expected to struggle, but tonight will be the 3rd night and I've actually enjoyed it!

I wanted to post in case anyone else is struggling with the heart effects of going on Famvir in hopes that a combo with Mestonin may be helpful. It does, to me, point to the idea that Famvir or its effects somehow depress vagus function further, and cause some of the really bad side effects.

As always with any positive 'improvement', I am knocking on wood that the effect lasts.

 

[1gooddog]

I just want to say that i have struggled with heart issues for iver 10 yrs. Many trips to ER. Many tests. Results always the same. I do take a heart rate med. However I have been going through a very severe crash involving my heart struggling and me feeling very winded. Some research led me to plain old used for over 2500 years. My nasal passages were also congested I could not breathe. I was smellin g dust everywhere. No meds working. I took 650 aspirin for two days. Within a few hrs the first day my heart calmed down and my nasal p massages returned to normal.
Aspirin is an anti-inflammatory. And it worked for me. 2 weeks later and heart and nose still clear.

Being my age and taking coumadin it is a risk, but I just doubled my intake if spinal and tomatoes. Lol

 

[BadBadBear]

Ok, I'm at 6 months. Or is it 7? Hell if I know.

Short version:

The good: I can occasionally tolerate quite a lot of activity on a particular day. I even had a day where I woke up and felt "normal" most of the day.

The bad: The sore throat is back, the cyclical low grade fevers are happening, and I have days where I can't tolerate much activity. As well, my thyroid meds are making me crazy.

Long version:

Exactly the same as last year, I started having low grade fevers in April and also started feeling like my thyroid meds were overstimulating. My journal from last year showed exactly the same problems. I tried reducing my T3 meds, and even tried tapering off back then, too. I am currently trying NDT meds (under doc supervision) but my most recent tests show I'm profoundly hypothyroid despite having fevers. Usually my BP tanks when I go hypo, but it's still doing OK. So its like I'm hypothyroid, but not. We just raised my thyroid meds and will retest in a few weeks.

I also checked my regular labs, liver enzymes are a tad high - not out of range but above optimal - but are OK. WBC has really gotten "normal" and shows no indication of infection (or reason for fevers). My MPV (mean platelet value) is low again. Elytes are OK.

I have been doing a protocol to treat my sore throat involving gargling with Listerine then a zinc chloride mouthwash, and also using Xlear nasal wash. I am definitely breathing better, but still have a sore throat of unknown origin, and I have the "red crescents" in my tonsil area.

I have had one day where I tolerated a LOT of activity - 20k steps! Wasn't trying to do that much, just did. Did not have PEM, but was OK tired the next day. I think its possible I'm overdoing it, but also I really am getting a lot of rest days and recliner time daily.

At the moment I think the low thyroid issue is generally draining my motivation, so it's difficult to unravel things. I also think my changing thyroid status reflects changes in my body from AV therapy, and its causing general body confusion. It may be that low thyroid is letting EBV flare a bit and causing the sore throat.

As I tapered off my T3, I felt this huge sense of "something" that had been blocking my T3 receptors cleared and I got really hyper for a few days. It was great, huge motivation and energy - but too much of it. I am hoping with NDT I can find a place where my body functions well and doesn't use any of its energy having to make blocking hormones.

So I'm in limbo and not sure how much improvement I really have. I think until the thyroid levels are optimal, it's impossible to tell. I hope that sub optimal thyroid has been masking my progress and that I'll eventually bust through a wall.

Hey Kool Aid!

 

[Lisa108]

Hi @BadBadBear, if this is happening for the second time in April, maybe you are allergic to any kind of pollen? Could explain low-grade fever, sore throat, and the feeling of overstimulation... maybe trying an anti-histamine would help?
Kind regards!

 

[BadBadBear]

Hi @BadBadBear, if this is happening for the second time in April, maybe you are allergic to any kind of pollen? Could explain low-grade fever, sore throat, and the feeling of overstimulation... maybe trying an anti-histamine would help?
Kind regards!

I have thought about the possibility of it being allergies, but I have no real symptoms of allergies or histamine. No sneezing, running nose, itchy eyes, etc. Is it possible to have allergies but not have symptoms of high histamine?

I have had multiple doctors look at my labs and ask if I have allergies (high neutrophils? eosinophils? something like that) , and I always say no as I am not symptomatic.

I definitely think something seasonal happens, though.

 

[BadBadBear]

I wanted to post an update.

Short version, I am starting to do better. I can tolerate more activity than I could at the same time last year. PTSD is even starting to improve, I don't know if that's CFS related or AV related, but I have to think it probably is.

Longer version, I did finally get switched off of T3 meds onto a combo of T4 + a small amt of NDT. I am feeling well on it, and having less issues with overstimulation. It has taken about 2 full months to feel well, but it's kicking in and I'm able to do more.

For ex. I take one of my horses to a clinic for training for an hour ride once and a great while when my fav. trainer comes to town. Last year, I really should not have done it energy wise. I felt horrible, it took days to recover, but I did it anyway. This year, I went to the clinic, rode 1 hr for 3 days in a row, and was able to sit and watch other people ride for a few hours in the company of some other riders. I absolutely could not have done this last year. I am tired after the clinic, but still able to do things and don't need extensive recovery.

I still take lots of rest breaks during the day and try to nap in the afternoon. But I am up from 1 major activity a day (like grocery shopping or a short ride on my horse) up to 2-3 major activities. If they don't involve walking, I do better. Riding the horse does not tire me like walking does, so there's still an element of hampered energy but it's much better.

I also can take a shower every morning and get through the 'cost of living' activities which I could not do last year, if I wanted to have an activity day.

The PTSD issue was interesting, and I'm going to write it in the next post to keep this one from getting too long.

Anyway, I'm still on a gram of Famvir and still taking Celebrex in the PM, and taking other anti-inflammatories in the AM.

My night sleep has gotten really good, and I generally don't wake at all during the night for a bathroom trip anymore, nor do I have any lengthy wake-ups. I often don't move at all from 9 PM to 4 AM, and wake a little sore from not moving.

So it's good. My friends and family are noticing the energy shift, as well I have feel like my mood is better with a bit less anhedonia.

ETA: forgot to add, the combo of manuka honey before bed and an oral probiotic seems to be helping the endless sore throat! I am not sure which component does it since I started at the same time, and I'm now afraid to stop. Lol.

 

[BadBadBear]

This post is going to be about my PTSD and how it is shifting, so feel free to skip it. Just documenting it here to see what develops in the future.

So I have some really gnarly PTSD from childhood abuse/neglect/etc. My brain shuts down when it affects me, I don't go into hyper-arousal or re-living the experience. Rather I go into dissociation and shutdown. I can get pretty severely affected being around certain people and horses at the same time.

I didn't expect it, but the first time I went to a riding lesson with a trainer who comes through about 3x a year (that I really like), being around him provokes severe dissociation, he looks too much like my stepdad for my brain's liking (side note, my step dad was a decent person, he was just very trauma-adjacent). Last year was my first try to ride with the trainer, and it was horrid. I could not stay in my body. At all.

But I felt safe and I decided to keep going back and riding, 1. because I have a hellacious stubborn streak, 2. I wanted to show myself I could face my 'flashbacks' and they would not kill me. So I let him know what happens to me, and I kept going back anyway. I rode with him on two other occasions last year, the last just before starting Famvir.

I just went and rode with him for the first time this year about 2 weeks ago. My brain had suppressed the idea that I have PTSD around him, so I forgot about it and just tried to ride. As usual, it took me a while to figure out what was wrong but I realized I was still having PTSD shutdown & dissociation (and f-me it's hard to ride and take instruction and dissociate, but I did).

On the 3rd day, something happened. The dissociation stopped cold. It was like a fog lifted, and honestly I was so shocked to be able to clearly see his face and know who he was and what his name was that I felt completely unable to think for the rest of the ride because it had become so dazzlingly clear.

I don't know if the Famvir or the thyroid or just the balm of time is working, but something is starting to let up in my PTSD. As with some other CFS'ers, my psych issues have been HORRID at times since I've been sick. I am hoping this is a sign that my brain is starting to heal at some level.

Since that clinic, I've had some other things happen where I feel like the anhedonia and 'depression' are getting better (I never get sad, just flat like a soda you opened last week and forgot). I have not had an episode of laughing so hard I cried and couldn't breathe in a long time, and had one of those the other night.

So maybe, just maybe, some of this stuff will lift over time and drag me down less. My brain spends a TON of energy suppressing these old memories and experiences right now, if those can let go maybe everything can become simpler and more clear and a bit dazzling.

 

[Iritu1021]

I've had similar psychic experiences... I don't know if they are better described as dissociation or depersonalization. I felt very disconnected from external world, it didn't feel convincingly real to me and my brain didn't seem to be processing the incoming sensory information in the right way. It's as if I could make sense of it logically but not enough energy to process it through feelings.

Early in my illness when I was taking stimulants, I felt like I was autistic - which is very opposite of my pre-illness personality. I used to be very much of a feeler most of my life and found it easy to read people and then I lost those seemingly inherent skills.

For me, having moments of intense inner emotionality (usually with crying spells) and strong feelings about my past happened on the way to brain function improvement - so take it as a good sign. What really helped me to get through the dissociation was Jungian psychology, Myer- Briggs and learning about different cognitive functions, and how they process the world in different ways.

I never took any antivirals, to me it always felt like a bad case of hormone and neurotransmitter imbalance in the brain. Short course of lithium orotate also seemed to have helped with my brain function though I think it made my thyroid function worse but I think I used too high doses.

I agree with you that it's a terrible state to be in, and I think I'm still scarred by the whole experience but it also gave me a new perspective on myself and life in general. In the end, I've chosen to view it as a spiritual experience.