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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Famvir- my story

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by jsfm, Oct 3, 2013.

  1. jsfm

    jsfm

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    Yesterday was day 1 on famvir. I don't expect to having to many side effects yet but I am scared I will get more sick before I get any better. I still work (very sedentary job with flexible hours) so I am scared that I will be forced to quit working. However, I have already been needing to slow down on working, if not quit due to how ill I am.

    I have read numerous posts about others taking famvir but my brain fog is so bad that I miss most of what I am reading.

    Can anyone give me their rundown of side effects and the timeframe from first dose of famvir?

    I really appreciate everyones advice and help.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Firstly try not to quit your job, first start of if u can to reduce your hours. I say this as it can be hard to get a diagnosis of cfs/me and than get disabilty payments.

    I didnt get any side effects at all from famvir but took 3 months to notice the effects which initially was realising i wasnt crashing, then steadily improved from there. Cant predict side effects unfortunately.

    good luck.
     
    L'engle likes this.
  3. Ruthie24

    Ruthie24 Senior Member

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    Have been on Famvir for 7 months now. Only had a couple really bad days of side effects. Doc decreased the dose and I built up a little slower. Then I seemed to hit a "tipping point" as he described it and I was able to quickly tolerate higher doses after a few weeks.

    I think it was a couple months when my family started commenting that they were noticing changes in my mental state. I didn't notice it at that point. After about 3-4 months I started noticing it and was having a pretty good time all the way around, both physically and mentally. Of course, I then started really overdoing things as my son was getting married and I started going back downhill after that. I still think cognitively things are better than they were before I started it (but not as good as before I relapsed), but physically things have been pretty challenging again.

    I'm taking a fairly high dose of Famvir I think.

    Good luck!
     
    L'engle likes this.
  4. jsfm

    jsfm

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    What dose did your doctor start you out on? Mine started me out on 500mg 3x/day (total 1500mg). How high is your dose now? Are your titres any better?

    I am super nauseated and have loose bowels multiple times a day. I wonder if I should just take the 1500 mg all at night and maybe I won't feel so yucky.
     
  5. SOC

    SOC Senior Member

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    I would definitely NOT take the entire dose all at once, especially if you're already having side effects with the distributed dose. It's already upsetting your GI system, putting more in at once is not likely to help that. You would also be hugely increasing the amount of med in your system at one time which could be dangerous. Just not a good idea.

    You should call your doc and see what he suggests before you mess around with your dosing. If you feel the need to relieve your side effects before you can talk to your doc, it would make sense to cut back on the dose until you can consult with him.
     
    L'engle, Ruthie24 and Little Bluestem like this.
  6. Ruthie24

    Ruthie24 Senior Member

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    New Mexico, USA
    Are you taking it with food? That might help. I remember having quite a bit of GI stuff at the beginning. My doc decreased my dose to 500 mg 4x a day when I couldn't tolerate the full dose at the beginning. It did get better over time, but was pretty miserable the first few weeks. Every time he increased my dose I would also have really nasty migraines as well for a few days. Eventually I got to a point where it pretty much all stopped and I could increase and didn't have any side effects. Since everybody is different you still should be checking in with your doc about your own situation.

    Haven't had titers re-tested but from what he said, of the patients who respond to antivirals only around 50% drop their titer levels so he doesn't think that's necessarily a great indicator; it just happens to be one of the few that they have to work with.

    Good Luck!
     
  7. surethom

    surethom

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    Where can I buy Famvir from online that will ship to the UK without a prescription as my Dr is useless & will not even talk about takin Antivirals for my EBV & CMV. Cheers
     
  8. maryb

    maryb iherb code TAK122

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    How do you know you have EBV and CMV?
     
  9. surethom

    surethom

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    I have had loads of blood test from my Doctors & a couple of months ago the blood test showed EBV & recent CMV virus loads, but all they keep saying is its a virus & antivirals do not work on them (though posts on here & other sites, some say Famvir can help & others say Valtrex can help?), they will clear up over time, but I have mild flu/chills symptoms will body & face flushing/rash & currently off work.

    Been on Aciclovir for 5 months still no better, would Famvir or Valtrex work better as I have read?
     
  10. maryb

    maryb iherb code TAK122

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    Your doctor is right to some extent - much better to try to let your body heal itself from viruses if it can.
    The decision to take a/virals depends on a nunber of factors and its not a good idea to take them without medical supervision. Even ME doctors don't automatically prescribe a/virals.
    Doctors like Prof de M-erleir would treat co-infections first,
    When were you diagnosed with ME/CFS?
    Its unusual for GPs in the UK to test for viruses if they suspect you have ME.

    If you've only recently become ill you may have PVFS, the best thing for this is rest rest rest and as little stress as possible.
     
  11. surethom

    surethom

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    Hi thanks for the relpy, I have been ill for the last 5 months now, but bad the last 2 weeks & have been off work since then, body does not seem to be healing self & I think it needs some help.

    I have not been diagnosed with anything yet, just that I have EBV & CMV, they just seem to say it is viral & not much else.?
     
  12. surethom

    surethom

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    Been back to the Dr & he Refused point blank to try me on Famvir or any other antiviral because there are no clinical studies & he does not care about what I have read on blogs.

    Help can anyone suggest any websites that I can buy Famvir without a prescription (I hear from india are the best)
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
  14. surethom

    surethom

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    Heapsreal, Many thanks, I will look at this website & have found the thread with other links. Cheers.
     
    heapsreal likes this.
  15. surethom

    surethom

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    I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake after 5 hours or so. Not sure if Acyclovir was helping keeping viruses (ebv, cmv) at bay ish or famvir reaction??

    Off famvir & back on Acyclovir for now. Anyone had any sleep problems on famvir/Acyclovir
     
  16. Christopher

    Christopher Senior Member

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    depending on what's going on in your body, that acyclovir dosage could be way too low to be doing anything useful.
     

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