International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Mestinon + Famvir - whoa!

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

  1. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    hannaO_, 1gooddog, sb4 and 9 others like this.
  2. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    1,574
    Likes:
    543
    Mestinon plus Famvir. Sounds a lot like Dr Pridgen's protocol.
     
    MEMum likes this.
  3. rodgergrummidge

    rodgergrummidge Senior Member

    Messages:
    124
    Likes:
    272
    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
     
  4. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    MEMum, merylg, Binkie4 and 1 other person like this.
  5. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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

    Messages:
    1,574
    Likes:
    543
  7. rodgergrummidge

    rodgergrummidge Senior Member

    Messages:
    124
    Likes:
    272
    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
     
    adambeyoncelowe likes this.
  8. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    Mariesak and rodgergrummidge like this.
  9. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    Mariesak, pattismith and heapsreal like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,983
    Likes:
    8,362
    australia (brisbane)
    Might be just the immune system functioning better in general as the viral load is reduced??
     
  12. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    pattismith and heapsreal like this.
  13. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    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.
     
    Learner1, Mariesak, ryan31337 and 3 others like this.
  14. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    Quick note for week 10 on Famvir. My brain has had a couple of distinct episodes of the brain fog lifting.

    Once was feeling curious about what was in a clothes bag I had packed in June and literally hadn't even be able to see or notice it in my bedroom. It was like it came into focus and I wanted to know what was in it and had energy to follow through and empty it. It was strange to feel the flicker of curiosity and motivation.

    Also felt like playing piano a little. Haven't tried that in about a year. Playing music often kicks off dysautonomia, especially if I play at normal volume. I still have some of that but can feel things calm down inside as I play. Can't play too long, but a little bit seems good. It isn't making things worse, as it does at times.

    My walking is continuing to improve a little, air hunger and heart issues are much better. But its the moments of freedom from brain fog that are giving me the most hope.
     
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,956
    Likes:
    32,125
    USA
    I just discovered this thread and have some questions for you guys...

    @rodgergrummidge I am trying to figure this out right now as well. My EBV PCR is now positive but I would not have known outside of seeing the test results and have no symptoms of Mono like I did in 2012.

    This confuses me... if the PCR test picks up actual viral DNA in the blood (assuming it should be at zero and if the virus is present by PCR, I assume this means it is actively replicating?), then why would a PCR test show viral DNA in a healthy person? And by healthy I don't mean ME/CFS vs. no ME/CFS versus just in general?

    This is really fascinating to me and may pertain to my situation. If EBV is in the B-cells and the B-cells were bascially killed by Rituximab (in my case), then could the EBV be leaking from the B-cells into the blood and now showing up on a PCR? Or does this make no sense whatsoever? I bolded one of your sentences and was wondering if that is a theory or proven (b/c I don't know enough about this to form a coherent theory)! Could increased EBV serology be a bystander in an autoimmune flare?

    @BadBadBear Are you considering Ritux for next year for EBV or for autoimmunity (or for both or neither)?

    I will pray that you do not follow my path from 2015 either b/c it was a path straight to hell :fire: that I do not wish on anyone. Thank God my MCAS & allergic reactions went in remission and have never returned but it was horrible at the time. I truly do not know if taking the anti-viral had anything to do with it b/c I also had severe mold exposure as one of the triggers of the MCAS. But it sounds like you are doing great on the anti-viral and that is good news and I will continue to follow your progress!
     
    MEMum and BadBadBear like this.
  16. Janice Hargreaves

    Janice Hargreaves

    Messages:
    72
    Likes:
    229
    UK
    I too am interested in EBV and ME although brain fog stops me making much sense of it all.
    These I found caught my attention https://www.ncbi.nlm.nih.gov/pubmed/29225606 and https://www.ncbi.nlm.nih.gov/pubmed/28604802.
    It seems that there are few animal models for EBV and since the prevalence is so high (90 - 95%) then there is not much interest in it's disease causing abilities.
    However with transcriptomics and personalised medicine I wonder if this might slowly change?
     
    MEMum and BadBadBear like this.
  17. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    I am now at ~day 90 of Famvir/Mestonin/Celebrex. The sickly feeling has stayed gone since the last update, and I can't remember having any more episodes of air hunger or major palps since then, either.

    I am not 'well', and I still have major fatigue. I still do better with a daily nap. When I am tired, I get terrible brain fog.

    That said, I have had some shining moments, for example an few incidents of feeling a little curiosity and motivation to explore or clean up things in my environment. I hadn't even really considered it over the last year, and now I occasionally have a small bit of energy for that. Like cleaning the spice rack and all the bottles. Just silly little things that are so simple but were totally out of reach energetically.

    I have played piano a few times now, but have not had energy for it lately. But it was lovely to try it, as I hadn't even given it a try in over a year.

    I have been able to ride on a car trip with a friend. I had not gone more than 30 miles from home in a long time. This was 300 miles, and I didn't have a lot of pain from sitting, nor did my brain really conk out (when it does, I start stuttering and stammering and that didn't happen). I was very tired after, of course. But this was a huge milestone. I couldn't do it very often, but now at least I know its a possibility. It didn't cause days of PEM.

    I even took a small drive on my own to pick up a load of rescue dogs that needed transport, and it pretty much made me cry to even think that I COULD get in the car and go somewhere and do something useful.

    To that end, I am seeing doors open. It's tricky because I still have a certain allotment of daily energy, and going over it is not good. Some days I can move around quite a lot, some days I cannot. If anything, it's more tricky now because one voice in my brain tells me I'm better, and my deep wisdom is that I am not and I must be careful.

    I am not back to where I was before this crash, but I am getting close to where I was before starting Famvir (8 months into a bad crash).

    Things are compounded at the moment by me starting keto on Jan. 1. I had gained ~50# since the start of my illness in 2012. I lost about 15 last year, and wanted to try to lose another 10-15 this year. I have electrolyte issues and cannot stay on keto very long - hopefully 12 weeks or so will be possible. Then I'll try to stay at my new weight for the coming year.

    The difficulty with keto is it has disrupted my sleep, so at the moment I am in a phase of going a bit backward on my progress. However, I did not feel nearly as ill this time when starting keto, which I think is a good sign. I guess the next update will hopefully help me track how it has gone.

    My hope is that by April 1, I'll be ready to come off of keto. I had planned to try reducing my AV's then as well for summer months, as my flares always start in winter months. And then we will see where I am really at. I am hoping I can reduce AVs for summer, and will look at an increase from Oct. - Feb. to protect against a winter flare.

    I will try to update again in about 45 days, when I have used up my next bottle of Famvir as that is the easiest way for me to remember to do my writing. :)
     
    Mariesak, ErdemX, MEMum and 1 other person like this.
  18. Mariesak

    Mariesak

    Messages:
    28
    Likes:
    32
    New Salem, Massachusetts
    I was on Famvir & Celebrex for two years. Similar to you, I didn’t see any improvement for a couple of months. Those were a rough couple of months. Then things started to improve for nearly 2 years. This past Feb/Mar I had a major EBV relapse and switched from Famvir to Valtrex. I didn’t start seeing any improvements until nearly 4 months. Still struggling with many symptoms. I noticed the other day that when I took a 325mg aspirin I felt much better. I could feel my blood circulating. Given that we already have thick, sticky blood, adding the increased red blood cell volume that comes with antiviral treatment, may be part of the reason we feel so crummy while on antivirals. Pridgen says you have to be on them for the rest of your life. Sadly his protocol is not a cure.
     
    sb4 and BadBadBear like this.
  19. BadBadBear

    BadBadBear Senior Member

    Messages:
    460
    Likes:
    629
    Rocky Mountains
    @Mariesak Do you know what caused the major relapse? That must have been very frustrating after making good progress.

    I do often take aspirin. In place of Celebrex, I often take a combo of propolis, boswellia, and baby aspirin. Its effective for my pain issues, less expensive, and I don't seem to have side effects.

    I have tried higher dose aspirin, up to a gram a day, and feel pretty decent on that as well.
     
  20. Mariesak

    Mariesak

    Messages:
    28
    Likes:
    32
    New Salem, Massachusetts
    Not entirely sure what caused the relapse...there were some family stressors, but nothing unusual. Yes, it was a shock after being in partial remission for so long. It sounds like you are taking lower doses of Famvir and Celebrex than I was. I’m still taking 200mg Celebrex twice a day. I was taking 1500mg Famvir a day. I’m not even sure if it’s ok to take aspirin while on such a high dose of Celebrex. I’ve been too chicken to just skip a Celebrex and substitute with aspirin. It’s good to know that you’ve been able to do that. Thank you for posting your progress. It’s really helpful for us all.
     
    Binkie4 and BadBadBear like this.

See more popular forum discussions.

Share This Page