A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Antivirals, Liver Function, & Inflammation

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SDSue, Mar 4, 2015.

  1. SDSue

    SDSue Southeast

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    I've been on Famvir for about 3-1/2 months. I feel no better. I actually feel worse.

    My latest blood work shows elevated liver enzymes, along with vastly improved GFR (kidney):thumbsup:, and reduced titers of EBV and HH6. My doc is lowering my dose of Famvir from 1.5 gms/day to 1 gm/day after a wash-out period, if my liver enzymes return to normal.

    Questions:

    ***1. Does Famvir have the same anti-inflammatory effect that is found with Valcyte?
    2. If not, do I need to request low dose Celebrex or Colchicine to get some anti-inflam action going?
    3. If my liver enzymes are elevated on Famvir, does this rule out switching to Valcyte?
    4. Has anyone gotten better on Famvir as their only AV? Seems I only read Valcyte success stories.

    I'm rather frustrated. (and quite possibly impatient, lol). Thanks.
     
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  2. lnester7

    lnester7 Seven

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    Did u do the 1 gallon water while on famvir?
    I feel more inflamed in it. I am playing w celebrex.
    I have gotten much better on Famvir (not before 1000 a day and 2 years in)
     
  3. SDSue

    SDSue Southeast

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    I did NOT do the 1 gallon thing this past month (prior to latest blood work). My doc probably told me that, but for some reason I forgot and got out of the habit (normally do for my POTS).

    I'm glad to hear you improved on the Famvir. Did you have both EBV and HH6, or others? Thanks so much!
     
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  4. ahmo

    ahmo Senior Member

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    I reacted poorly to Celebrex. I found NOW celery extract to be an excellent inflammatory. I don't know how it would differe from another form of celery. And, my standard broken record response, coffee enemas for happy liver. ;)
     
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  5. acer2000

    acer2000 Senior Member

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    FWIW my liver enzymes went up on Valcyte (and I had RUQ pain). Its pretty much the only effect that I had from it...
     
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  6. SDSue

    SDSue Southeast

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    Do you know if Famvir offers anti-inflammatory action similar to that of Valcyte? I can't seem to find any references on this.

    Also, I noticed that you have have used both Colchicine and Celebrex. May I ask what your experience has been, and which you prefer? Thank you so much.

    May I ask how long you were on Valcyte? I'm sorry it didn't help you.
     
  7. lnester7

    lnester7 Seven

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    @SDSue My big problem is hh6v, At some point I got EBV (doctor told me Hh6 reactivated it???) But it went down on once I increased the Famvir.
     
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  8. SDSue

    SDSue Southeast

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    Thanks so much. I sure hope I follow in your footsteps and recover some abilities!
     
  9. acer2000

    acer2000 Senior Member

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    I was on it for about 6 months. Its a good thing to try if you have proven HHV6 or EBV activation. I know some people who have felt a lot better on it. My HHV6 titers weren't all that high and my EBV was not active. So it was always a long shot for me.
     
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  10. physicsstudent13

    physicsstudent13 Senior Member

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    are there any articles on how HHV-6 damages the brain and possibly increases glutamate excitotoxicity?
     
  11. acer2000

    acer2000 Senior Member

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    Yes there are quite a few. If you have active HHV6 its bad news. Thats why a lot of CFS docs will treat readily with Valcyte and/or Cidofvir. My doctor tested for active HHV via PCR in blood and spinal fluid. (I was negative). I get the impression that its a minority of people who show positive, but in those people treatment is very helpful. If you have high titers its more of an educated guessing game. Montoya's original paper suggested that for titers above a certain level, its more probable than not that HHV6 is active so its worth a shot to treat it. I don't think anyone has every explained why HHV6 is activating and causing problems in ME/CFS. Outside of cases of chromosomal integration that is...

    http://hhv-6foundation.org is a good resource.
     
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  12. physicsstudent13

    physicsstudent13 Senior Member

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    thanks! glucose can prevent damage from excitotoxicity. my viral infections actually resulted in being disfigured by bell's palsy and losing my hearing and taste. so were the years of metformin my endo prescribed me damaging to my brain?
    I'm not sure what causes my high glutamate levels and excitotoxicity, perhaps low oxygen from severe asthma/sleep apnea.

    http://en.wikipedia.org/wiki/Excitotoxicity
    http://hhv-6foundation.org/clinicians/hhv-6-treatment
    http://en.wikipedia.org/wiki/Excitatory_amino-acid_transporter
     
    Last edited: Mar 6, 2015
  13. lnester7

    lnester7 Seven

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    FYI, If you have any OI, you have to treat that to see results on treatment (heart rate variability, BP variability....).
    Also treat sleep and any other issues.
     
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  14. Butydoc

    Butydoc President

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    Hi SDSue,

    I don't know if Famvir acts also like an anti-inflammatory drug. Montoya prescribed for me Valcyte as a anti-inflammatory drug and acyclovir as an antiviral.

    I'm not clear if colchicine was a benefit or not. I was started on 0.6mg along with Valcyte and doxycycline. He increased the dose of the colchicine to 0.9mg since my progress was stalled. I had to stop all the drugs because of elevated liver enzymes and deteriorating renal function. Approximately 6mo later Dr Montoya started me on Valcyte 450mg/d, acyclovir 800mg twice daily and celebrex 50 mg twice daily. I have improved substantially with this regimen. Because celebrex and acyclovir were started at the same time, it is not clear which of these drugs are responsible for my improvement. I suspect it is the celebrex.

    Best,
    Gary
     
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  15. SDSue

    SDSue Southeast

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    @Butydoc Thanks so much for your response. I've also recently had to stop drugs due to liver function. The current plan is to resume Famvir at a lower dose (500 mg twice daily) once my liver enzymes trend toward normal. Seems it might be prudent to request Celebrex and, if that doesn't help, perhaps a low dose Valcyte as well.

    I'm glad to hear you are once again enjoying improvement. I hope it continues for you. Again, thanks!
     
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  16. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    I seemed to improve drastically when I took a 20 day course starting with cephalexin 10 days than roughly 10 days on amoxicillian. Before I was to the point where any substantive amount of work around my house would put me down for a day or two with sometimes severe PEM. After I was working days in a row up to 8 hours around my house with virtually no PEM. Effects completely wore off after about two months. Recently did a ten day course of Valtrex but it seemed to heighten all my normal symptoms and gave me mild "sharp type of" pain which seemed to be coming from my colon. I quit valtrex & switched back to amoxicillan again and seem to be doing better but it took quite a few days after I quit valtrex to start having some good days. And when I do I work around the house I usually have to rest the next day because of mild to moderate PEM. In the past before any of these medications have had PEM so bad that when I tried to stand up I got dizzy and extremely weak not to dissimilar to sea sickness. (from pushing myself to do things) Not a spinning type of dizziness though.
     
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  17. nandixon

    nandixon Senior Member

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    @antares4141
    It's interesting that a number of people are having success with beta-lactam antibiotics, like amoxicillin, ampicillin, etc.

    There are at least a couple of threads now on the ability of those beta-lactams to decrease the harmful effects of glutamate in the brain (via upregulation of a glutamate transporter). This is the most recent, I think, and it also references an earlier thread:
    Ampicillin increases GLT-1 expression
     
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  18. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    I don't understand any of this. I assumed I had some type of low grade infection and that is why abx helped me. Haven't had a chance to read through the thread you linked to. Any websites that explain the concept?
     
  19. nandixon

    nandixon Senior Member

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    antares4141 likes this.
  20. Hip

    Hip Senior Member

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    The basic idea is that beta lactam antibiotics, as well as having an antibacterial effect, also happen to increase the number of glutamate transporters in the brain, which are found on brain cells.

    Glutamate transporters work to pump glutamate out from the extracellular areas of the brain. So by having more of these transporters, you will be better able to remove glutamate from your brain.

    In one of @Marco's blog articles, he talks about the possibility that high levels of glutamate may be causing ME/CFS symptoms; if this is true, then one might expect that by increasing the amount of glutamate transporters in the brain, you would lower glutamate, and thereby would reduce ME/CFS symptoms.



    So it is possible that the benefits you experienced from the two beta lactam antibiotics you took, cephalexin and amoxicillin, may have derived from their ability to increase glutamate transporter numbers, rather than their ability to fight bacteria.



    I have tried to replicate the ME/CFS benefits that some people have obtained with beta lactams, but no luck as yet. I have just ordered some ampicillin, which seems to be the most potent booster of glutamate transporter numbers, to see if that works for me.
     
    Last edited: Mar 10, 2015

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