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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Coldsores/herpes

Discussion in 'General ME/CFS Discussion' started by digital dog, Aug 22, 2015.

  1. digital dog

    digital dog Senior Member

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    I used to get these all the time. I only get one a year now but if I have this virus could I be benefit from a particular drug?
    I don't mind the coldsores but is there more going on with people with this virus?
    Many thanks
     
    Hutan likes this.
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    I used an antibiotic when my herpes was raging. It worked for a couple weeks, then I reacted to it. I then went on to olive leaf extract, which worked at least as well. Tea tree oil for topical application. My understanding is that herpes is one of the things that becomes an opportunistic infection, further dragging our systems down. Following detox efforts, I now only very rarely get a single lesion, when something else is stressing the system.
     
  3. Hutan

    Hutan Senior Member

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    Prior to the illness I got a cold sore about once a year. After the illness I started getting them more frequently and after about a year i continuously had them. As one healed, a new one started. I was prescribed Valtrex and I now take two 500 mg tablets a day.

    If I miss a day or two, I get a cold sore. I keep testing it as it is a bit hard to believe. But yes, every time I miss the tablets, I get a cold sore.

    The idea of increased vulnerability to latent infections makes sense to me. My children (who got ME at the same time as me) have not had problems with cold sores; perhaps one a year just as they got prior to becoming ill.

    I don't know. For me, taking Valtrex is obviously an easy decision. But I'm not sure if it makes me feel better other than by stopping the coldsores. My son, who is still sick, tried Valtrex for a while but did not notice any significant improvement in his symptoms.
     
    Last edited: Aug 22, 2015
  4. digital dog

    digital dog Senior Member

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    Thank you for the replies. I don't care about getting coldsores (I'd happily swap a face full of them to feel semi-normal) but I wondered if having the virus could be a prerequisite for getting ill.
    I will look into Valtrex. Thank you for that Hutan.
     
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  5. Tammy

    Tammy Senior Member

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    l-lysine and Zinc are good for coldsores.
     
    Last edited: Aug 22, 2015
  6. belize44

    belize44 Senior Member

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    I always start dosing with Lysine and zinc too, as well as seeing a doctor for a prescription for Acyclovir. Like others have said here, I usually get this once a year. It is usually pretty severe, and I am usually in bed for about five days with extreme malaise and grogginess.
     
  7. rosie26

    rosie26 Senior Member

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    I've never had a cold sore but I have a close family member who gets them every now and then. I often wonder having lived so closely, I have never caught it off them and I have had lots of contact where I could have caught it off someone. I actually feel like I might be resistant to it?
     
    Last edited: Aug 22, 2015
  8. Eeyore

    Eeyore Senior Member

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    Any reasonably competent PCP should be able to help you with this. The treatments for the 2 herpes simplex viruses are well established and highly effective, although we have no cure. The basic drugs are aciclovir and penciclovir. The first can be taken orally or used topically (or IV). The latter is only used topically. Topicals do not work very well but are available OTC - I don't know the name but I'm sure it can be googled.

    They should be taken orally if you wish to control symptoms. The problem is that both are broken down rapidly and not well absorbed, so only a bit gets into your system intact. With aciclovir, you can take more of it more often to compensate. A better option is to use prodrugs (chemicals that are converted into the relevant drug in the body, usually by the liver). In this case, the prodrugs are stable and easily absorbed at high concentrations.

    The prodrug for aciclovir is valaciclovir and the prodrug for penciclovir is famciclovir. These are the best drugs to control recurrent outbreaks of the herpes simplex viruses. They can be taken either to suppress (i.e. every day, whether or not you have symptoms) or to treat an outbreak (higher doses, only when you already have an outbreak). Suppressive therapy also reduces the risk of transmission to others, although it does not eliminate it.

    They are generally considered to be very safe drugs. I don't have either herpes simplex virus, but I did take very high dose valtrex (1g q6h) for ME and I did not have any side effects, although at those levels it's a potential concern - but they were trying to treat HHV6 at the time (which unlike HSV1/2 is not very susceptible to valtrex). This was many years ago, and I believe that there is little merit in trying antivirals in ME at this time. It didn't really help me (although it knocked down titers on my lab work for HHV6). However if you have herpes simplex virus 1 or 2 and are getting outbreaks, regular doses (much less than what I was taking) are generally very safe and your regular doc should be willing to prescribe it.

    Also - are you sure you have cold sores? Do you know the difference between cold sores and canker sores? Where are they located, what do they look like? Canker sores are found generally inside the mouth, usually on the inside lips and cheeks as well as the tongue and even soft palate. Cold sores are found usually on the lips, the vermillion border between the lips and regular skin, and sometimes on the hard palate inside the mouth or on the attached gums. Canker sores are usually white with a red halo. Cold sores start as blisters and rupture, coalescing into larger cold sores that scab over.

    Canker sores are not viral and are not contagious, and they cannot be treated by antivirals. The true cause is unknown but probably immune related. Topical steroids can help canker sores but make cold sores worse. Cold sores are caused by herpes simplex 1 usually (and occasionally herpes simplex 2, but this is rare). They are viral and contagious, even when not visible/active (although less so when not visible). They respond very well to valtrex (valaciclovir) and famvir (famciclovir). The former, in particular, reduces rates of transmission to others.

    If you are not troubled by your cold sores themselves, and not worried about transmitting the virus, but are looking only for a clue as to ME treatment, I'd advise you to look elsewhere. I tried it in my much younger, less skeptical days on a doctor's advice, and while I suffered no harm, I also did not benefit. High doses can be dangerous, but normal/low doses as indicated by the FDA prescribing information are unlikely to cause problems.

    If you still aren't sure if you have cold sores or canker sores, ask your doctor to swab a sore and PCR it. Also, get a type specific IgG herpes blood test. IgM testing is not useful. Western blot is the current gold standard for blood testing and is both more sensitive and more specific, but not as widely available.

    I'd urge you to view theories that suggest ME is a result of herpes virus infections with a high degree of skepticism. The only thing high dose valtrex did for me was lighten my wallet (about $7500 over 6 months). Fortunately it's generic now and much cheaper, and you wouldn't be on crazy high doses for herpes simplex anyways, so it's probably not a lot of money now for that indication.
     
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  9. digital dog

    digital dog Senior Member

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    Thank you eyesore for your detailed response; very much appreciated.
    I did wonder if their was a link between coldsores and ME but obviously it is not that simple.
     
    Eeyore likes this.
  10. geraldt52

    geraldt52 Senior Member

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    My bolding. Double check the spelling on Eeyore's "name", digital dog...:). Thanks for today's laugh though!!!! You have to love how a ME/CFS brain works!
     
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  11. Violeta

    Violeta Senior Member

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    Blame it on autocorrect. ;)
     
    Eeyore likes this.

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