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ME/CFS: A disease at war with itself
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my famvir trial

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by clive powney, Nov 5, 2012.

  1. clive powney

    clive powney Senior Member

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    Week 6 update :

    Maybe there has been a slight shift in the right direction, but as ever it may be just the usual ups and downs of this stupid disease. For the first time in 10 years I actually slept through the night and didnt need to wake up for a pee or anything else for that matter. It was only one night but it was 1 night in the last 3650 - maybe coincidence. I was also back to yoga and have no real problems afterwards. I am not waving any flags or anything as I have had some improvements before over the years, only to slip back again as soon as I get any hopes up. I also get my results back on thursday for potassium levels.
    HTree, anniekim, L'engle and 3 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When I first started famvir I had little inklings it was helping but hard to really say if it was famvir or not but after six months it was definitely noticeable. Hind-site my mistake i think was swapping to valtrex and or stopping famvir to early, I should have continued until all my viral markers were 100% within normal range, from memory my cd8 T cells were something like .1 or .2 above normal, I thought close enough was good enough, I should have kept going as well as got onto immunovir. No black and white answers unfortunately, I think there is going to be quite a number of us that are going to have to remain on antiviral s for years, but if it helps then thats a good thing, now we just need it recognised as a treatment for cfs/me so health systems will help cover the cost of these expensive treatments.
    anniekim and L'engle like this.
  3. clive powney

    clive powney Senior Member

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    Week 7 update :

    Potassium levels back up to 3.8 which is low normal - spironolactone 100mg once a day did the trick in only 2 weeks.
    Need to keep a check on this so I have another blood test in a month or so. Doseage has been reduced to 50mg.
    Had a reasonable week up until saturday evening when I started to get a bit of a sore throat. This has now turned into a full blown cough and cold with a temperature of 37.4. Although this doesnt sound much , but my temp usually sits around 36.3 so for me it is a high temp. This is only the second time I have run a tempurature in many years so it may be a good sign? I also have an ear infection which the doctor has prescribed amoxycillin 3x500mg for 7 days. Seems I am going from getting nothing to getting every virus around!
    Merry Christmas to you all and hopefully a healthy new year.
    allyb likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Famvir might be lowering your viral load enough that now allows your immune system to start working.
    good luck dude
  5. clive powney

    clive powney Senior Member

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    Thanks for the comment Heaps - hope this is true.
    ukxmrv likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have u thought of adding an immune mod down the track?
  7. HTree

    HTree

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    Hi Famvir Friends -- what regular blood testing do you do? and how often?
    liver, kidney, electrolytes, ...?
    (and IgG viral check every 3 months i'm told)?

    I'm trying to decide when to start the imunovir; nexavir, the first modulator I tried, was bit of a nitghmare, but hoping i tolerate imunovir better. Have been on Famvir just a month though, so, shall I wait 3 whole months? 6 whole months before trying imunvoir?

    So far nothing too bad from Famvir so open minded to Imunovir (though scared about it!!)
    One thing with famvir: anyone have mood changes? I'm half-glass full person for the most part (believe it or not, with all this even!) feel like its switched a bit. Confounding factors however are winter time/darkness, and major illness in family (not me)-- So wondering if stress or Famvir...Thoughts?

    thanks :)
    Htree
  8. clive powney

    clive powney Senior Member

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    I have tried immune modulators , immunovir and equilibrant (separately of course) and had no effects with them after 6 months so moved on.
    heapsreal likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do get get any labs to see if nk numbers went up?

    I think sometimes the infections are to big for immune system to clean them up on their own but maybe once we have got them under control with av's then things like immunovir will help keep viruses down and or good add non with av's??
  10. clive powney

    clive powney Senior Member

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    Heaps, one thing you are forgetting is I am in the UK. My NK function would not be on the list of things to check by my doctor. If they checked NK function as part of CBT or GET then it would have been checked :cool:.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I know u in UK, thought u may have gone across the channel, maybe???
    They dont test nk function in the uk because then they would find something, lol.
    Sushi likes this.
  12. clive powney

    clive powney Senior Member

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    Week 8 update :
    The cold I contracted gradually subsided and I was back to base for a day or so until yesterday when I started to feel a bit nauseous and aching limbs. This morning I have woke up and my sore ears are back and my cold seems to have reappeared.
    No-one said this would be a breeze!
    Happy and healthy new year to you all.
    heapsreal likes this.
  13. clive powney

    clive powney Senior Member

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    week 9 update ;
    The cold that reappeared stayed quite mild until thursday when it became much much worse. I ended up not even getting dressed for the next 2 days. I had a very sore throat , from my mouth right down past my adams apple and into my chest. I was very tired with achey limbs and a really tight cough.
    Today, I still have a bunged up nose, sore throat and cough which is slightly more loose, although I am coughing up thick green gunk , especially in the morning. No-one else in the house has this at the moment so I am hoping it maybe something that has been in me for a while, but that is speculation and hope.
    ukxmrv and heapsreal like this.
  14. clive powney

    clive powney Senior Member

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    week 10 update :
    My cold has just about gone apart from a slight tickly cough and slight bunged up nose still. My wife now has this, but not as bad (unless it is the 'man flu' syndrome) so it doesnt seem to be any IRIS type reaction. Feeling back at baseline, Not much else unfortunately at the moment.
  15. clive powney

    clive powney Senior Member

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    Week 11 update :
    The cold did not subside but by wednesday went back to a full blown one. Sore throat bad cough bunged up nose and feeling tired and aching limbs. The cold is still with me and my nose it completely bunged up and I am still coughing up phlegm. I saw the doctor on thursday for my potassium results (down a bit at 3.4 - this is because I reduced the dose of spironolactone) and also to ask him about my sore throat etc. He examined me and said that I had a virus and it must be mutating and re-infecting. I have had this cold now for 3 whole weeks and I have thought that I had got over it twice only for it to return just as bad a day or so later. Maybe it is my body trying to get rid of virus debris as the famvir is stopping replication - or just as the doctor said? Time will tell.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Most secondary infections from cold/flu eg runnynose/sinus thing are generally bacterial infections, i would be pushing this doc for some antibiotics to get this latest infection behind you.
    hope u feel better soon
  17. clive powney

    clive powney Senior Member

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    week 12 update
    Well the cold I had just about went by Thursday and apart from a little phlegm in the back of my throat has remained gone. I seem to have a fe joint pains that have appeared over the last few days, my left wrist, left ankle and the left side of the bottom of my back are quite painful and have been for about 5 days now. Other than that the last 3 days have been quite reasonable. I seem to have lost the weird increase in symptoms that always seems to happen very late evening when I start to get tired. There may be an inkling again that I have a little more energy and want to do things rather than not. I will see if this lasts.
  18. clive powney

    clive powney Senior Member

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    Week 13 update
    The "better" feeling I had lasted until saturday (apart from 1 day in the middle) . So I would have scored myself a definate 6, for 7 out of 8 days. I was generally upbeat, feeling more energetic and was noticeably in a better place. The phlegmy throat was still there and so is the pain in the lower left of my back but the upbeat feeling was overriding these niggles. On saturday though I woke up feeling quite groggy and by the evening I was back to feeling crap. Same thing on sunday. Today not quite so bad but the sniffles seem to have started again and I think I have a slight ear infection back. I think this because I use sponge earplugs to bed to cut out the noise and when I put the left one in I get a pain as the air pressure increases - this is the same problem I had before Christmas and it has not cleared up properly. So I cant wear the ear plug - this has a knock on effect on my sleep as I am a very light sleeper. I am due to go on a plane in 10 days and I know this will be a problem when we come in to land so I am back to the docs today hopefully to get some antibiotics. Also got a retest on my potassium levels on wednesday with the results the following week.

    Heapsreal - does this pattern seem to be similar to your journey. It is frustrating , although so have the last 10 years been!
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think our journeys all have some differences but similarities. All i can say is that it looks like your immune system is chasing after something and maybe famvir has taken the load off the immune system so it can start working. antibiotics sound like a good idea, ask for doxycycline as its useful against alot of infection common in cfs as well as respiratory tract infections in general, look at a good couple of weeks and watch out for die off reactions as well. hard to negotiate if one has multiple infections.

    Do u feel in general you are slowly improving though? The first 6 months for me i didnt notice improvement as such, maybe a small amount but noticed i didnt crash which i use to do every few weeks. After 6 months i notice improvements in fatigue and stamina. Labs i had started improving too.

    hope that helps.
  20. clive powney

    clive powney Senior Member

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    As you expressed this is a difficult question. If you had asked me Friday last week I would have said that I was making a slow improvement, but today I would say, not sure. Unfortunately I have no labs to compare any results :(

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