1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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In Brief: Muscles and the 'myalgia' in ME/CFS
In the first in a new series of 'In Brief' articles, Andrew Gladman provides a helpful insight into the science behind fairly common topics and explores how they relate to ME/CFS. This time he looks at the muscles, exploring how our reported symptoms might be associated with our...
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  1. Timaca

    Timaca Senior Member

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    Anyone take valtrex? If so, how much for how long? Did you have an increase in symptoms or side effects from the drug? My doctor just increased my dose from 500 mg bid to 500 mg tid and I'm having significant issues....especially neurological ones.

    Also, have you seen any benefits from the drug?

    Anything you can share would be helpful.

    Thanks in advance,
    Timaca
  2. SOC

    SOC Back to work (easy, part-time work)

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    I've been taking Valtrex for more than a year. I haven't had any side effects so far. I've taken as much at 6000mg daily (that's a lot), but now I'm taking 4000mg daily.

    Just a thought -- it might be worth trying a different generic (assuming you're taking a generic). Apparently there is a noticeable difference in the generics -- maybe it's because there are different "inert" ingredients?
  3. Timaca

    Timaca Senior Member

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    Soc~ Thanks for your reply. Have you improved by taking the drug?

    Best, Timaca
  4. SOC

    SOC Back to work (easy, part-time work)

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    Yes, although I had much more improvement with Valcyte. I think what the Valtrex is doing for me most is keeping all the herpesviruses from reactivating frequently. My EBV titre isn't decreasing, but I don't have viral symptoms any more, which I consider a huge plus.

    I've heard good things about Famvir for EBV -- just as effective and fewer side effects. I'm considering asking for the change. It might be just enough different to take another bite out of these pesky herpesviruses.
  5. Timaca

    Timaca Senior Member

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    SOC~ What symptoms do you consider to be "viral symptoms"? What is your EBV titer? I don't think EBV is a proble for me now, but HSV1 seems to be.....
    Thanks,
    Timaca
  6. SOC

    SOC Back to work (easy, part-time work)

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    Viral symptoms -- sore throat, intermittent ear pain, swollen glands, constant body achiness, crushing fatigue (and sleepiness).

    I don't remember my EBV titres, but I can look them up if you like. I think Dr Lerner suspected an HSV1 neurological infection in me which was why I was on such a high dose of Valtrex.
  7. Timaca

    Timaca Senior Member

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    Hi SOC~ I don't have sore throat, ear pain or swollen glands. I do have fatigue (today it's great--hard to get out of bed today), burning, sparking crawling nerves all over my body and migrating joint pain. More in a PM.

    Best, Timaca
  8. SOC

    SOC Back to work (easy, part-time work)

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    Sounds terrible. :hug: And neurological (in my uneducated opinion)
  9. Timaca

    Timaca Senior Member

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    SOC~ Thanks for the hugs. I can use them. Which symptoms cleared up for you on the valcyte and valtrex? Did you have nerve pain too? Or was it the sore throat, ear pain and swollen glands that cleared up for you? I was on valcyte for 9 months.
  10. Timaca

    Timaca Senior Member

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    SOC~ Here's a hug for you too. :hug: :)
  11. SOC

    SOC Back to work (easy, part-time work)

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    I never had nerve pain, thank goodness. I had the joint and muscle aches bad enough to wake me up, but nothing like nerve pain. Those aches have improved, but I still have to take Cymbalta to keep them under control.

    Today, I would say that the only symptoms that are not under control are energy related -- PEM, tachycardia (POTS?) and exercise intolerance. I still take meds for sleep and the Cymbalta for muscle/joint aches.

    So I'd say the symptoms cleared up with antivirals are sore throat, swollen glands, severe fatigue, and cognitive impairments. I think that aches and MCS-type symptoms improved with antivirals, but other treatments had a greater effect.

    I don't feel sick anymore and I'm definitely not exhausted, or even fatigued. I am very limited in what I can do physically, though. If I tried to do more physically, I'd probably feel fatigued, but I don't think it would be that crushing fatigue that was with me every moment for years.
  12. ukxmrv

    ukxmrv Senior Member

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    I wonder if for some of us we take a drug like Valtrex, it begins to work on the herpes viri and then something else awakens, rears up and smacks us in the face?

    I'm saying this because of my recent Antibiotic experience. AB's without Valtrex and Imunovir = massive problems. AB's with Valtrex and Imunovir = not too bad for a short time only and short increase in functioning after.
  13. Timaca

    Timaca Senior Member

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    HI SOC~ I do think we are battling more than one pathogen. What kind of problems do you have when you take antibiotics? I have major issues.....last time it was stiff neck, severe spine pain, tachycardia, bad flu like day (chills, severe body aches and fatigue), and a horizontal day.

    I'm glad that you are feeling better. I hope you get even more improvements with your health.

    Timaca
  14. SOC

    SOC Back to work (easy, part-time work)

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    I'm not particularly sensitive to medications in general and have had no major problems with abx (except sulfa drugs). I took probiotics during and after the time I was on Clarithromycin, but I don't know if it made any difference.

    I had a rough 8-10 weeks with Valcyte -- about 4 months in. It was like the worst relapse plus shingles. :ill: But once I got past that I felt a lot better. No other antibiotic or antiviral has given me trouble.

    Have you or your doc considered IRIS or herx with your antibiotics problems? Maybe something to reduce inflammation (something serious, not OTC stuff) along with the abx might help...?

    I does sound like you have serious problems with abx. :( The severe spine pain would be very difficult for me to handle. Having problems with the meds makes the illness so much more difficult!

    I am feeling a lot better. :D Now if only I could beat this serious exercise intolerance/PEM thing.

    I think some of us may have IRIS-type reactions with antivirals. Perhaps our immune systems finally get a break from dealing with the herpes virus(es), start functioning better and turn up all kinds of nasty infections to go after. Then we feel like crap again. If the inflammation doesn't get dangerously bad, then we come out the other side feeling better. Or so the story goes. It certainly went that way for me.

    *IRIS = Immune Reconstitution Inflammatory Syndrome http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome
    heapsreal likes this.
  15. pine108kell

    pine108kell Senior Member

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    I started valtrex about a month ago and started a thread: http://forums.phoenixrising.me/index.php?threads/strong-and-quick-reaction-to-valtrex.19057/

    After starting at really high dose, I've been taking .5 g per day for 3 weeks and still am functioning below baseline: tachycardia, out of breath, sluggish, fatigue, aggitation, memory problems. Still waiting to get back close to baseline and increase dose but am now wondering if this will ever happen. my ability to interact with my family is currently very difficult with these symptoms but just don't want to give up yet.
  16. SOC

    SOC Back to work (easy, part-time work)

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    Are you keeping up with fluids? It's always a good idea with Valtrex because of the possibility of forming kidney stones. You're not taking a big dose, so it's probably not an issue, though. :) Your symptoms do sound a bit low blood volume-ish, so maybe some extra fluids and electrolytes would help -- one way or another.
  17. pine108kell

    pine108kell Senior Member

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    Yes, thanks, I drink plenty of fluids--this low dose of valtrex just kicks my butt, which has surprised and mystified me.
  18. SOC

    SOC Back to work (easy, part-time work)

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    That's too bad. :( There aren't a lot of options for antivirals, so it's tough when you can't tolerate one or more of them. I hope you can find something that works for you.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    your on a big dose, could always lower it, the minimum i have seen people use is 500mg twice a day. Or change to famvir??
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    the antivirals are obviously stirring something up but if using valtrex is making u feel alot worse for month on end maybe its time to take a break for a few weeks and then try it again. Maybe look into some immune modulators as well. I hope things ease up for you soon.

    cheers!!!

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