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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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    Thought I would start a thread to cover my trial on Famvir.
    Currently I am taking
    amitriptyline (25mg)
    Milk Kefir + collostrum 2 small glasses per day
    saurkraut as and when.
    I will be dosing 3 x 500mg of Famvir per day for 6 months (if possible) and continuing with all of the above also
    My current general overall fatigue/symptom
    score is around 4.5 - 5.5
     
    HTree, merylg, justy and 1 other person like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Cool, will keep an eye on this thread.

    good luck,
    cheers!!
     
  3. beaverfury

    beaverfury beaverfury

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    Go,Clive! I'm thinking of trialing famvir too. My activity level is about the same as yours. I'm 42.

    I'm getting virusy (if thats a word) along with PEM after every bout of physical exertion these days.
    Is that the same with you? Is that why youre going on famvir?

    I'm just trying to get a clearer picture of whether i should go down the antiviral route.
     
  4. beaverfury

    beaverfury beaverfury

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    So you have stopped the equilibriant, Clive? Not a winner for you?

    I was following the equilibriant thread.
     
  5. clive powney

    clive powney Senior Member

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    Beaverfury - I am 49 and have been ill (steady decline) since november 2002 - My MAIN symptoms have been problems whilst exercising and problems afterwards, balance, nausea with cloudy head, absolute inability to cope with even slightly stressful situations, secondary depression and feelings that I am on my way out or something dreadful is about to happen, panic attacks , disrupted sleep pattern etc etc.
    The reasons I am trying Famvir are -
    1) Tried many many things but never anti-virals
    2) Symptoms first started when I had shingles (stupidly just carried on without resting , 12hr working day as senior manager in a very stressful job , playing squash , other training ,running football team , young family etc etc)
    3) Had chicken pox 7 years previous to this and realised that I had had some symptoms not long after, that could be first signs of M.E. (very bad balance issues, IBS, sleep disturbance, anxiety)
    3) Checked out recent research and found that VZV virus is implicated in this desease as much as any of the other herpes virses (read the article on dorsal root ganglion chronic infection , here on Phoenix Rising)
    4) Have always had a gut feeling that VZV had something to do with this , but listened to doctors initially and wandered away from this route , but I still always looked back wondering if it was the problem

    I have stopped equilibrant but think it is worth a try for 6 months as others have seen improvements
     
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  6. maryb

    maryb iherb code TAK122

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    Fingers crossed that Famvir works for you Clive I know like most of us you've had no help from the UK GPs and tried so many things.

    I'm sure too that a virus is at the root of my illness too, I don't think its VZV but EBV and CMV both of which have re-activated several times over the past 5 years according to private test results.
    I've seen reports of people with ME who have shingles practically on a permanent level, for god's sake why can't the doctors get their head around it,

    Anyhow good luck with it.

    BTW
    Funnily enough I tried a couple of bottle of colostrum early on in the year, thought I felt a bit better on it, but didn't get anymore as it was so exxpensive.
     
    ukxmrv and heapsreal like this.
  7. clive powney

    clive powney Senior Member

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    Maryb,

    I use neovite colostrum powder and whisk it in to my milk kefir which I brew myself from the kefir company . It is not that expensive, I think about £15 a month for 2 months supply
     
  8. maryb

    maryb iherb code TAK122

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    Thanks Clive I'll check it out.
     
  9. clive powney

    clive powney Senior Member

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    week 1 update :

    After 3 days had 2 days where I felt soooo tired all day and slept two or three times each day as well as at night (I do get these sporadically anyway), Other than that no real changes , tolerating the drugs well (hopefully they are famvir and not talcum powder or something - you never know if you buy stuff on t'internet)
     
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  10. maryb

    maryb iherb code TAK122

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    Ewww Clive talcum powder - now stop it:)
    tiredness may be a good sign.
     
  11. clive powney

    clive powney Senior Member

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    Week 2 update :
    still taking same regime and no particular changes to report. No issues with the drugs.
    I do think my baseline anxiety has improved over the last few weeks although I think this was attributed to the amitryptiline, it seems to have dampened yo some extent whatever causes the low level background anxiety that I have had permanently for years. It hasnt though had the same effect if anything slightly stressful occurs - I still over react inside.
     
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  12. clive powney

    clive powney Senior Member

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    week 3 update :
    A few hours after posting last week I started to notice a sore throat and nasal soreness coming on and the day after woke with a heavy cold and sore throat. This got worse over the next couple of days and I also had a few odd looking small spots appear on my lower back which were itch and sore, These went after a couple more days and the cold subsided gradually over 5 days,I dont believe that the cold was a herx or IRIS as my son had had a cold just prior to this and my wife now has it, although it is probably one of only 3 colds I have had in about 4 years abd by far the worst one. Today I am back to my 'normal' ME state. Nothing further to report - I am still taking the same regime.
     
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  13. ukxmrv

    ukxmrv Senior Member

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    That's strange Clive. I also got some strange small spots on my lower back around this time of the year for a couple of years in a row, accompanied by a flu. Did you get any back pain at all?
     
  14. snowathlete

    snowathlete

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    good luck clive. good to see threads like this giving us others feedback.
     
    clive powney likes this.
  15. HTree

    HTree

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    Hi Clive, all,
    I've just started Famvir as well, though on a much lower dose. just 250mg.
    Interestingly, I too had a very small rash or something itchy! on my buttocks. As well as back pain, but that started prior to Famvir.
    Interesting though, I haven't had a rash.skin type things since a child. I wonder...
    Otherwise no effects yet..
    Good luck to us all!!
    Htree
     
    clive powney likes this.
  16. clive powney

    clive powney Senior Member

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    Ukxmrv - yes I did get some back pain and also a strange , but not particularly uncomfortable hot feeling down my whole spine for a couple of days
     
    ukxmrv likes this.
  17. clive powney

    clive powney Senior Member

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    week 4 update :

    Again nothing to report really. My cold has totally gone.
    Something that I havent posted is because I initially thought nothing of it, is that my potassium levels have dropped over the last 6 or 7 months. This seemed to co-incide with me trialling equilibrant and kefir mixed with colostrum. This has continued and is now becoming a slight concern. My levels started at 4.3 (have been good all through my illness) and are now at 3.1 , even though the doctor has been treating me with , firstly amiloride , then a few weeks of potassium chloride (100mg twice a day) supplement and it still has dropped. I have dropped those 2 and now am taking spironolactone 100mg. I know that others here have had issues with hypokalemia and it must be a sign of something going on good or bad - any views anyone??
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Try the amino acid taurine, it helps keep potassium inside the cells. Are u getting any fluid retention as well?? Taurine is a natural diuretic. It can also help calm the nervous system down.
     
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  19. clive powney

    clive powney Senior Member

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    Week 5 update :

    A usual 'M.E.' week. Woke monday morning with a desperate need for something sugary (one of my worst symptoms on and off although blood sugar has always tested fine) - after an hour or so felt really tired and slept for a while. Woke and felt quite good. Had a really good two days and probably overdid it and wednesday was feeling dreadful. This lasted until Sunday whereby I was back to square one.
    Potassium levels to be checked on Thursday again with results the week after.

    Clive
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its hard to readjust your boundaries when u get some improvement. I think sometimes it best to stay in previous boundaries for a few months before testing them again if u can. It sounds like your slowly moving forward, it is 2 steps forward and one back for most of us on antivirals.
     

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