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General Survey re: Anti-virals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jul 20, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    One more question... :D @knackers323 asked this in another thread re: Dr. Bateman and I wanted to bring the question over here to the a/v thread. If someone who was unclear which viruses they had (or was never tested) took an a/v, would there be any harm in this?
  2. Misfit Toy

    Misfit Toy Senior Member

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    I have a ton of Valcyte from 2008, but never took a pill. I was scared of the liver info about it. Actually, remembering back...I did take Valcyte and had a hard time with it. Took Valtrex in 2007 for a month. I can't remember how I felt other than exhaustion, but there was so much going on then....I had reason to be exhausted. It did not hurt me, I remember that.

    Acyclovir :eek::eek::eek::bang-head: ---See how that blue little guy's tongue is red, well mine turned white. Now, after 2 days of stopping, back to it's normal hot red color. Also, my hand became like a stroke victim (It curled up) is back to normal. I became insanely sick from 3 days of this medicine. holy. cow. Pain like I have never had and neuropathy in hand. NEVER AGAIN. OR, maybe I will try it again to see if I am absolutely right in that it caused pain and stroke like symptoms in hand.

    I have to do something as my EBV titers are too high and I now have intercostal neuralgia which no one can figure out why. Well, upon looking it up, the main reason people get it is SHINGLES. A herpes virus. I have never had shingles, but what started me with CFS? A full blown case of rapid EBV virus and I have never been the same.

    I think my body is exhausted from fighting it. I think it lives in my brain. I think my CVID or my lymphopenia either brought it on and is DEFINITELY allowing it to stick around or the EBV is killing my immune system and bringing on all of these other diagnosis' and no one is connecting the G-damn dots! Connect the dots.

    I need prescription coverage, but can be in touch with companies for free meds, as I do qualify. My doctor is not huge on the whole viral theory and it's something we talk about, he listens and doesn't know what to think. HE used to be really into it, but swears there is no hard core proof that any of it works.

    This is what I know for fact: I have fever blisters. The only thing that makes them go away is Valtrex. So, there is a correlation. For sure. So, if valtrex makes fever blisters from a virus go away...maybe it can help the viral load dissipate. My adrenals are also a problem. Why? Maybe, just maybe because they are exhausted from fighting this damn virus and other bacteria's that are involved due to immune system tanking and not having enough IGG to fight it.
    Last edited: Jul 21, 2014
    Gingergrrl likes this.
  3. SOC

    SOC Moderator and Senior Member

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    Valcyte is not the right med for EBV. Valtrex or Famvir is usually what is prescribed. Valcyte is for CMV and HHV6. Valcyte is a VERY serious medication with potentially serious side effects -- liver problems and neutropenia. Both are reversible if caught in time, which is why you need frequent blood tests while you are taking it. If you have a serious CMV or HHV6 infection, it's doing a lot of damage on it's own, so you need the medication to stop that damage. The benefits of taking Valcyte outweigh the risks in that case. If you don't have CMV or HHV6, then why risk the side effects of Valcyte when it's not going to help much?

    If you have EBV and one or both of CMV and HHV6, then your doctor will probably prescribe both Valcyte and Valtrex, either at the same time or sequentially.

    IMO, yes. Antivirals are not entirely benign. Like most medications, they have side effects. To make the risk from the side effects worth it, you want to be taking the medication most likely to clear up the infection you have. So you need to know which virus(es) you have and what the best medication(s) for that would be.
    NK17, Hip and Gingergrrl like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A few have done this with valtrex or famvir for say 6 months as a treatment trial, if it works then you could say one of these viruses are an issue. Sometimes its probably cheaper to just trial and antiviral as mentioned for 6 months would work out cheaper then doing alot of testing that may not be able to give you a 100% answer???
    Testing is still an educated guess, nothing thats 100% at the moment.
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @heapsreal Thanks for your answer (b/c I had been curious what you thought re: someone taking an a/v without knowing which viruses they tested positive for!)
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cfsers from uk or australia are limited to testing. General viral testing just says positive or negative to igm or igg with no viral titre levels. SO igm is generally only present in the very beginning of herpes infections and igg is a sign of previous exposure to the viruses, so cant tell us if its currently an issue for us. Some of us when first coming down with an infection may have had our docs test these and got a positive result and generally married up with a full blood count which shows elevated lymphocytes and or high or low neutrophils.

    So when people talk about how high their viral titres are etc , these tests just arent available to us in australia and the UK. So to tell if these viruses are an issue the only way to know is to treat it and see what happens. As mentioned above, i wouldnt do this with valcyte as it needs constant monitoring. Famvir again is a good option and quite safe.
    AndyPandy, Gingergrrl and SOC like this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    @heapsreal, thanks again and Famvir for all the reasons you and a few others have stated is my first choice (so hopefully my tests match up with this!)
    heapsreal likes this.
  8. IreneF

    IreneF Senior Member

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    I took Valcyte for nine months two or three years ago, with modest benefits in cognitive function. In June I started Valcyte + colchicine, and I feel much better. I still have the same symptoms, but my crashes are shorter and less intense, plus I have enough energy to cook every couple of days. This means chopping a couple of vegetables, lying down for an hour, then repeating the process until done.

    We added Plaquenil about three weeks ago to see if it would help my hands. I've been getting pain and neuropathy, but I have pre-existing RSI.

    I'm going to see my regular doc (non-specialist) on Friday to discuss my drug combo and set up liver and kidney function tests. I've got a ride set up in case I can't drive myself. I hope I can arrange for someone to come to my house and draw blood, but I'm not hopeful about that. If I can get a standing order for blood draws I can go when I feel up to it or can set up a ride. Cabs are too dicey. I've been in situations where I've waited over an hour for a cab.
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  9. Hip

    Hip Senior Member

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    @SOC has I think mostly answered this question, @Gingergrrl43, explaining that Valcyte is a medication with potentially serious side effects, and so you'd want to think carefully about using it. But Valcyte does get results in ME/CFS patients, as it is significantly stronger than many of the other herpes family virus antivirals, and is effective for a wide range of herpes viruses.

    The main herpes family antivirals used in ME/CFS are the following:

    ———————————————————————————————————————————————————————————————
    Antiviral Drugs for Herpes Family Viruses
    ———————————————————————————————————————————————————————————————

    Valtrex (valacyclovir) · · · EBV, VZV, HSV-1, HSV-2
    Famvir (famciclovir) · · · · EBV, VZV, HSV-1, HSV-2
    Valcyte (valganciclovir) · · EBV, HHV-6, CMV, VZV, HSV-1, HSV-2
    Vistide (cidofovir)· · · · · EBV, HHV-6, CMV, VZV, HSV-1, HSV-2

    Falcigo (artesunate) · · · · EBV, HHV-6, CMV, HSV-1
    Nexavir· · · · · · · · · · · EBV, HHV-6
    Foscavir (foscarnet) · · · · HHV-6, CMV, HSV-1, HSV-2

    ———————————————————————————————————————————————————————————————

    Source: here.
    Sources for artesunate: 1, 2, 3, 4.
    Sources for Nexavir: 1, 2.

    Note: the drugs in red above have potentially serious side effects.

    Note: Valtrex (valacyclovir) is the prodrug of Zovirax (acyclovir)
    Famvir (famciclovir) is the prodrug of Denavir (penciclovir)
    Cytovene (ganciclovir) is the prodrug of Valcyte (valganciclovir)

    As you can see, for EBV you can use Valtrex, Famvir, Nexavir or artesunate, which are pretty safe drugs, and are usually quite well tolerated (ie, you don't feel bad when you take them). Though they are not as strong as Valcyte.

    Note that as far as viral testing is concerned, you don't always need high viral titers to benefit from an antiviral. There are people on this forum who have not had high herpes family virus titers, yet have still done well on Valcyte.

    And indeed, in this study by Dr Jose Montoya on ME/CFS patients with HHV-6 or EBV infections, he found that Valcyte treatment was just as effective in patients with mildly elevated viral titers as it was in patients with highly elevated viral titers.
    Last edited: Oct 6, 2014
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @Hip Thank you so much for all this info and it was exactly what I was trying to sort out. I have an appt this morning and am going to read through it again more thoroughly when I get back. You are so kind to post it all for me. You ROCK!!!
  11. jimells

    jimells Senior Member

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    A year ago a doctor told me I had an HHV6 infection, not based on viral titers. I took Valtrex for two months, then asked the doctor to try Valcyte after I read that Valtrex doesn't usually work on HHV6. How come the "expert" doctor didn't already know this?

    I took Valcyte for six months, then gave up. I did experience a partial remission, which ended before I stopped the Valcyte, so there was no correlation. The required monthly blood tests showed adverse effects; I don't know if the doctor ever noticed.

    Last month I showed the lab results from a year ago to my neuro. He said the tests don't show I have a current infection. Should I believe him (a clinician who also researches Alzheimer's at a VA facility near Boston) or the other doctor (an alleged expert in chronic/environmental illness)?

    I've given up on the doctors who prescribed the anti-virals. They are 500 miles away and impossible to deal with over the telephone. Plus they wouldn't bill Medicaid, and they sent blood to labs who wouldn't bill Medicaid, which is supposed to cover deductibles and co-pays not covered by Medicare.

    I've given up on the idea that there is any treatment that will help me. I've also tried LDN, the methylation supplements, other supplements, chinese herbs, acupuncture, etc. etc. It's all been a waste of my very limited strength and money, except perhaps CoQ10 has helped the severity of migraines that are triggered whenever I do more than the minimum activity required to stay alive.

    I'm sick of grasping at straws and finding nettles instead. I'll probably be one of the 20% who are "cured" of this illness by suicide.
  12. Hip

    Hip Senior Member

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    There are many people on the forum that have more experience with herpes antivirals that I do; I have only really tried Nexavir, and have yet to try Famvir or Valcyte, which are commonly used antivirals on this forum. If you search this forum for Famvir or Valcyte, you should find accounts from people who have tried these two drugs.
    Gingergrrl likes this.
  13. Hip

    Hip Senior Member

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    Have you ever added to your regimen other supplements known to be useful for migraine, such as feverfew, riboflavin and magnesium? Ref: Supplements and Herbs for Migraine | The Migraine Trust
  14. jimells

    jimells Senior Member

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    I used the "Calm" magnesium citrate for a few years, until the local health food store went out of business. Any more than a very small amount seemed to bother my gut. I don't think it particularly helped the headaches, but it seems to help muscle spasms. For me, the best preventative is to avoid triggering PEM.
    rosie26 likes this.
  15. jstefl

    jstefl Senior Member

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    Help!

    I am trying without success to fine Nexavir on the naturalcompounder site.

    A search tells me they can't find it, and I looked through their pictures without seeing it.

    What am I doing wrong?

    Does this require a doctors prescription?

    John
  16. Butydoc

    Butydoc President

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    Hi Hip,

    I wonder if the positive experiences some patients have received from Valcte are more due to the inhibitory effects on microglial cells rather than it's antiviral effects. This would explain why some people with relatively low titers of HHV6 seem to respond to this drug. Apparently acyclovir doesn't have the same inhibitory effect on microglial cells as Valcyte.

    Best,
    Gary
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Hip, I have read a lot of anecdotal experiences now on PR re: a/v's but you helped me summarize (from manual & studies) which a/v's are indicated with which viruses, which are better tolerated, etc, which is exactly what I was trying to find. You are excellent with finding the precise info and putting it together in a really clear way and just wanted to let you know it was really helpful to me (who is still fairly new to all this!)
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  18. Hip

    Hip Senior Member

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    That is a very interesting idea. I did not know that Valcyte acted on microglia. But indeed, this study says that ganciclovir, which Valcyte turns into in the body, potent inhibits microglial proliferation and neuroinflammation, and the study authors say that "Our experiments suggest ganciclovir may have beneficial effects in the CNS beyond its antiviral properties."
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  19. vamah

    vamah Senior Member

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    I took valcyte for a year for hhv6. My titer dropped from 1:1280 to 1:320 (still considered high) and stuck there, so I stopped taking it. I recently decided to start taking it again because I think I have felt progressively worse since stopping. I never had any major side effects bu I did get regular blood tests to make sure there was no liver damage, etc happening.
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  20. IreneF

    IreneF Senior Member

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    I tolerated Valcyte very well, no probs.

    I recognize that I'm at a point where I need to take risks if I'm going to get better.

    I also think that viral titers can be misleading, because we tracked mine (EBV & HHV-6) for years, and the level had no relationship to how I felt. Neither did my Mycoplasma titers. In fact, if Mycoplasma goes up again, I won't take antibiotics unless I get symptoms. So Gary's theory about microglia may be closer to the truth.
    Valentijn, NK17 and Gingergrrl like this.

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