posted
Anyone have intense joint pain/stiffness, etc. from taking Acyclovir?
I'm having a hell of a time after Acyclovir for a little over a week now. I'm only taking ONE 800mg tablet a day -------- even though I'm supposed to be taking THREE 800mg/day!
Incredible neck/back/wrist/hand/finger/hip/knee/ankle pain and stiffness ------- you get the picture.
Curious if anyone has had this type of reaction. I'm taking this med for my HHV-6. I've been putting off taking anything for the HHV-6 for a couple of years now, due to all the other health issues I've had to address.
I also feel "creepy," like my skin feels icky and sensitive........really tired......just lots of "regular" everyday sx that I normally have from Lyme & everything else.........
But this feels a little amplified. Haven't called my doctor(s) because, well, you know the standard answers (or lack of) that go along with questions of this nature. Blah, blah, blah....
Any feedback is much appreciated. I'll check in later because I've got to try to run at least a couple of errands before the downpour starts here in Texas!
Thanks so much for any words of wisdom.
Take care,
terri3boys Posts: 268 | From Texas | Registered: Aug 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I did 4800 a day for 2 yrs. I did feel more tired at first but it did help over all.
Maybe you are just stirring up the virus by not taking the recommended dosage?
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Thanks, dmc! One doctor recommended 2400mg/day, but one of my other doctors (who knows me & my body's reactions to high doses of meds, etc.) said that was waaaaayyyy too much for my weight ----- under 100lbs.
He wants me to go slow right now. Too many other issues that are pending, etc. I trust his judgement, as he's known & treated me for GI issues and overall "Body/Brain Issues Gone Wild!" since '96.
(Call the 800# and Joe Francis probably has some perverted video on something like this available for "19.99" if you call in the next 30 minutes!) Only kidding folks, just a stupid joke! Hope you're shaking your head or laughing in pity at that scumbag. He'll get what's coming to him someday............I'll stop at this point before I get this post deleted!
Back to moi: The Lyme didn't even surface until Aug. '07 with the bulls-eye rash, etc. with one of my OTHER doctors. Loooonnnnnnnggg story........
Anyway, I don't know if this joint stiffness/pain, etc. is due to the Acyclovir or the high parathyroid labs we're currently dealing with or what the nerve biopsies taken from my leg by the neurologist have revealed (which I haven't been priviledged to hear the results ---- which are back) or if Jack went up the hill & Jill came tumbling down..............!!!!!!!!!
But, I hear you. Maybe the virus is being stirred up like you said. Could it be stirring up the EBV, CMV, etc. as well?
Thanks for your input! How much did the Acyclovir help you? What did it do for you as far as feeling better or your titers going down or what? I'm really interested.
I've been putting off taking an anti-viral for at least 2 years, and at least 3 doctors have been strongly recommending I take it. Right now, they've pretty much scared me into "Terri, you HAVE to start taking this. This is the Leader of the frat party going on in your body right now."
That's why I'm doing it.
Thanks again! At least I got a response from *somebody*!!!! (Sniff, sniff!)
Appreciate your experience with this. This is how everyone learns! I'm going to check out Timaca's past posts on HHV-6 as well.
I hope you're doing better after taking it for 2 years. Here's to better, happier, healthier days ahead for you and everyone else!!!!!
Wooooo-hoooo! terri3boys (who's boys don't stink as much as all these dx's!)
WHAT'S WRONG WITH ME TODAY???? I'm delirious!!!
Posts: 268 | From Texas | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Terri~ I take 800 mg acyclovir daily. (This was after a 9 month course of valcyte). It did make me ill.
Scroll down to the Oct. 30th posting. It is near the bottom of page 9. It will describe my first two weeks of being on acyclovir. You will need to sign in to read the posts.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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1Bitten2XShy
Unregistered
posted
Terri-
I 2nd your motion. I am 5 weeks into taking 1600MG daily and I ache so bad it is not funny. I wake up stiff, I am stiff thru out the day...even my hands are stiff.
I hope this is a sign that something in there is on its last legs, and it is not me!
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posted
Thanks for everyone's replies. (Timaca, I did check out your posts on the HHV6 board. I appreciate all the knowledge I gained there!)
All I know is that I haven't quite completed even TWO WEEKS of this, and I'm only taking 800mg ONCE A DAY! I feel so many sx: achy, stiff everywhere, feverish/random chills, ear ringings. head pain, nausea, moody, brain fog, extra fatigue, sleep changes, and on and on.
What's the difference in these sx vs. Lyme sx? I mean, really!
It seems like I'm following the same pattern everyone else does on this Acyclovir ---- I could sure come up with a more "fitting" name for this med!
Hopefully, it's doing something productive! I'll be patient and see what happens. I've still got to get an I-31 nuclear scan to look at my parathyroid glands.
My parathyroid hormone labs are still way high ----- something to do with calcium being "sucked" out of my bones? However, my blood calcium levels are normal. Just another ???????? on what's going on!
My skin punch nerve biopsies are back and I see the neurologist on the 28th. I wish she would give me the results on the phone, but her nurse called to tell me she wants to see me in person. which is not really like her........I'm a little nervous about that.
I'm sure things are fine ------ it's probably this Acyclovir making me crazy! I've got to get in bed. Why am I still up????????????
Night & thanks again! Take care,
terri3boys (the last time I counted!)
Posts: 268 | From Texas | Registered: Aug 2007
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posted
Never mind.......
Posts: 268 | From Texas | Registered: Aug 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have been taking it for a year... and i cycle between it giving me relief from symptoms you describe.. to.. them coming on stronger.. I have heard that sometimes when you attack one thing in the body that it can cause the other bugs to come out to play? Not sure that makes sense but a doctor did tell me this....
Such as when i concentrated on viral issues the lyme was more active. When i concentrated on lyme issues the viral issues became more active...
I have noticed this myself anyway.. and end up having to treat very much all i can at the same time......
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Have you tried LOMATIUM to see if it helps at all? It's an anti-viral herb that completely cured and eradicated my Herpes simplex lip sores. It's anti-flu also.
A bottle doesn't cost much.
I'm very curious to know if it helps against other viruses such as HHV-6.
----Polly Polygonum
Posts: 1226 | From USA | Registered: May 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Terri~ You might consider asking your doctor about staying at the 800 mg daily dose for quite awhile. I've been on that dose for some time. It took me 4 months before I started to feel better.
There is a decent chance my doctor may up my dose at my next appt. Either that or change my antibiotic. We have a couple of things to work on yet.
And you are right, you cannot tell the difference between lyme symptoms and viral symptoms...something I've said all along on this forum. Which is why you have to do the testing for lots of pathogens and treat what looks most obviously wrong.
Hang in there...it does look like you are killing off some viruses. Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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