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Mestonin + Famvir - whoa!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by BadBadBear, Oct 29, 2017.

  1. BadBadBear

    BadBadBear Senior Member

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    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.
     
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  2. aquariusgirl

    aquariusgirl Senior Member

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    Mestinon plus Famvir. Sounds a lot like Dr Pridgen's protocol.
     
    MEMum likes this.
  3. rodgergrummidge

    rodgergrummidge

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    Hi @BadBadBear
    Whats an EBV flare? (I assume its different to a primary EBV infection)
    How do you diagnose an EBV flare? Is there a test?
    What symptoms does an EBV flare cause and are they different to primary EBV infection?

    Also: Interesting results @BadBadBear with the Mestonin. I dont know much about it. Seems like its a cholinesterase inhibitor and so increases ACh levels. Is that how its supposed to work in CFS? Have others found benefit?

    hope your improvement continues

    Rodger
     
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  4. BadBadBear

    BadBadBear Senior Member

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    Hi Rodger, yes, I apparently get viral reactivations. My early antigen number for EBV goes higher when I get sick with it and I get all the symptoms of mono (fevers, swollen glands, sore muscles, sore throat, worsening weakness and fatigue, etc.), plus a bunch of autonomic nervous system issues. I have had it on and off for 5 years since the start of my CFS/ME issues.

    There's is a good series posted here about EBV diagnosis, etc.
    http://phoenixrising.me/research-2/...-barr-virus-i-ebv-rides-again-a-laymens-guide

    I have tested for a bunch of other autoimmune diseases and viruses, but EBV seems to the only one that I have, and that the numbers change for and match my symptoms.

    I had read one of Cort's articles about Mestonin and that lead me to try it. It explains the proposed mechanism: https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/

    I am also curious if anyone else has tried it, and if it will be helpful for the antiviral side effects.
     
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  5. BadBadBear

    BadBadBear Senior Member

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    Didn't he use Famvir + Celebrex? I have a script for Celebrex as well that I have not yet filled. I was having a lot of pain early last week and asked my doc for a script, but the pain seems to have settled down as well. And I need to wait a while to be sure about the Mestonin before I add Celebrex, in case there is a reaction to Celebrex.
     
  6. aquariusgirl

    aquariusgirl Senior Member

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  7. rodgergrummidge

    rodgergrummidge

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    Yes @BadBadBear thanks for the link. I must admit the EBV reactivation theory is confusing to me. Do all your EBV antigens go up during a flare? IgG-VCA? IgG-EA? IgG-EBNA? How much do they go up? Do any other antibodies go up? Measles? Mumps? any other pathogen you already have antibodies for? If your serology for multiple antigens go up, it may not necessarily be due to EBV?

    Some dont believe the EBV reactivation theory because anti-EBV antibodies can vary so much in an individual and it is thought that the variations in serology are nothing to do with EBV reactivation. I havent read enough on the topic, so I'm not sure.

    The other issue is that apparently EBV reactivation can occur in healthy individuals with no symptoms. Some studies suggest that the EBV virus (not antibodies) can be detected in healthy individuals by PCR. Does your EBV viral counts go up (determined by PCR) in a flare? I guess my question is; what does 'viral reactivation' mean in the context of EBV and CFS? Is it really causal, or simply correlative?

    Could it be possible that you have autoimmune flares (such as occurs in a range of autoimmune diseases) that creates a 'cytokine storm' which i) induces your ME/CFS symptoms and ii) over-stimulates your immune system which would result in increases in a whole range of your B-cell clones, which would just happen to include those that produce your EBV antibodies? In such a scenario, the increased EBV serology would simply be a bystander effect arising from autoimmune flares. It wouldnt be causal.

    Just a thought. Not sure if it makes sense.

    Rodger
     
  8. BadBadBear

    BadBadBear Senior Member

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    Rodger, it makes sense to me that EBV may be a secondary issue. I just can't bring myself to believe it is the cause of my ME/CFS on its own. I have run out of ideas for what my personal smoldering gun is.

    I do think I have mono flares because the symptoms line up, and my early antigen numbers go up when I have a bad flare up, and trend down as I recover.

    I have had mumps and measles as a kid, and I have had Chlamydia pneumoniae. But it is not active since I have been testing it.

    Like you, I have more questions than answers, and hopefully will know more about my own situation after the Famvir has time to yield whatever improvements are possible. I am eyeballing Ritux therapy next year if there is not significant improvement.

    Each flare up seems to bring with it new and worsening symptoms. My first flare up started in Oct., since then it happens annually in the winter, and lasts 4-10 months. This was the first one that brought lots of heart and lung discomfort.
     
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  9. BadBadBear

    BadBadBear Senior Member

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    FWIW, I finally picked up my Celebrex script and will add it in. 100 mg BID. Hoping it helps the coat hanger pain, and that reducing COX2 will hamper viruses.

    I started coming down with a cold (first one in several years) yesterday. Seems like I have read of this happening with other people who start antivirals.
     
  10. BadBadBear

    BadBadBear Senior Member

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    Thought I'd update. I am ~5 1/2 weeks into Famvir. Some of the uncomfortable side effects have diminished, and I'm now able to take my dose as 500 mg 2x per day instead of splitting it into 4 doses. I am still taking the Mestonin with it, and the heart palps and air hunger have been fairly minimal.

    I am starting to be able to walk a little more without negative symptoms. I have always been able to walk a little during my illness, often recliner bound during the day but not bed bound. I am still needing more naps that I did before I started Famvir, and I spend a good portion of daytime in my recliner.

    I just realized that when I was in town today - husband drove us in - I was able to walk up a small hill to the car without even noticing the effort. I needed a nap after town, but am tolerating small bouts of physical effort without heart misery.

    The other notable thing is that my glands below my jaw have started to shrink! The sore throat is still there, but is minimally annoying.

    The one thing really troubling me today is another incidence of "allergic reaction" to something I am not allergic to. This has happened a few times lately. A few days ago I reacted to nettle tea - something I drank often prior to starting Famvir. Today my face has been hot and swollen all day, presumably from eating shellfish yesterday (never had a shellfish reaction before).

    This represents an interesting immune shift. Prior to CFS, I was only known to be allergic to sulfa. During my illness, I had a small reaction to turmeric. Now I seem to be reacting much more strongly to previously non-problem foods. Is this a TH2 > TH1 shift or what could be the cause of this?

    I will update as I progress.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Might be just the immune system functioning better in general as the viral load is reduced??
     
  12. BadBadBear

    BadBadBear Senior Member

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    Man, I kind of liked the suppressed immune system better! :D I think theres an extra gallon of water just in my face at the moment. I have to admit I thought about Gingergrrrl's trip into severe autoimmunity & allergies after starting antivirals and am praying that I am not following that path. I remember reading that she got allergic to almost all foods.
     
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  13. BadBadBear

    BadBadBear Senior Member

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    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.
     
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