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Antivirals--pain from taking them anyone?

xrayspex

Senior Member
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hey I am pretty sure that I have correlated taking lysine and valcyte to bad pain reactions--headaches, neck and spine pain----I pulse them usually when take them and don't take the continuously. I figure its something to do with fighting viral stuff but when I google it not much comes up. Has anyone dealt with that? it really sucks. (I also wonder if its killing parasites too--I add that as an aside,knowing I risk losing more credibility with that one :) )
 

SOC

Senior Member
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I had no pain with Valcyte or Valtrex. BTW, I'd be concerned about not taking them continuously. The last thing you want is to develop an antiviral resistant form of the infection from intermittent use. :eek:
 

xrayspex

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thanks SOC, appreciate the feedback

yea, I am not sure what to think about the pulsing
I saw Dr Cheney once and he utilizes pulsing a lot...I have intense chemical sensitivities and cannot handle the pain and side effects of any daily medications...but I need to take antivirals sometimes to nip certain things in the bud quickly....but I won't be able to handle my job if took them several days in a row--too much pain---its a conundrum, and frankly I am sick of it

I realized after trying vit d again recently and feeling real bad again like I did in the past from taking it that it could be due to antiviral properties it had
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3308600/
Vit d is also a hormone and I do recall Judy Mikovitz warning against taking hormones for CFS people
 

SOC

Senior Member
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thanks SOC, appreciate the feedback

yea, I am not sure what to think about the pulsing
I saw Dr Cheney once and he utilizes pulsing a lot...I have intense chemical sensitivities and cannot handle the pain and side effects of any daily medications...but I need to take antivirals sometimes to nip certain things in the bud quickly....but I won't be able to handle my job if took them several days in a row--too much pain---its a conundrum, and frankly I am sick of it

I realized after trying vit d again recently and feeling real bad again like I did in the past from taking it that it could be due to antiviral properties it had
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3308600/
Vit d is also a hormone and I do recall Judy Mikovitz warning against taking hormones for CFS people
Pulsing might make sense for some supplements, but not so much for antibiotics and antivirals, I would think. Having a resistant form of some of these infections could be fatal -- or at least seriously nasty. ;) But if the doc prescribing the Valcyte is okay with the pulsing, who am I to say nay? :D

FWIW, my chemical sensitivities improved tremendously with the Pall Protocol. But then I wasn't so sensitive I couldn't take these supplements.
 

heapsreal

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the valcyte initially made me alot worse with headaches etc.

Im just not sure on resistence to antivirals. My doc said that its alot harder to get resistence to av's unlike antibiotics. The example he gave is that av's are used in an as needs bases for genital herpes etc and they seem to keep working for this without resistence occurring like antibiotics. I think acyclovir has been out now for over 30yrs and its only recently that they have seen some resistent cases.

I wonder if using the av's in an as needed basis allows these viruses to come out of hiding and then avs can act on them when this occurrs, but thats just a theory?? I still think when one starts on valcyte it would be preferable to do 6 months straight first to hammer the viral load down, then after that maybe on an as needed basis.

Theres alot we just dont know about this. Montoya has found that those who relapse when off valcyte respond when given valcyte again. avs get the viral load down but we need something to get the immune system to function properly to keep the buggers down somehow. I wish ampligen came in a cheap pill, then after lowering viruses with av's then ampligen could keep them down by firing up immune function??
 

heapsreal

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Prevention of CMV Disease in Transplantation:
Resistance was studied by genotypic analysis of CMV in PMNL samples collected i) on Day 100 (end of
study drug prophylaxis) and ii) in cases of suspected CMV disease up to 6 months after transplantation.
From the 245 patients randomised to receive valganciclovir, 198 Day 100 samples were available for
testing and no ganciclovir resistance mutations were observed. This compares with 2 ganciclovir
resistance mutations detected in the 103 samples tested (1.9%) for patients in the oral ganciclovir
comparator arm.
Of the 245 patients randomised to receive valganciclovir, samples from 50 patients with suspected CMV
disease were tested and no resistance mutations were observed. Of the 127 patients randomised on the
ganciclovir comparator arm, samples from the 29 patients with suspected CMV disease were tested, from
which two resistance mutations were observed, giving an incidence of resistance of 6.9%.

I found this about valcyte resistance, interesting?

http://www.roche-australia.com/fmfiles/re7229005/downloads/anti-virals/valcyte-pi.pdf
 

xrayspex

Senior Member
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u.s.a.
thanks you guys for input
you know it might be valtrex, sorry, get them mixed up, but 6 of one....

I have been pulsing it since like 2008 and nothing bad has happened yet...been doing it more in last couple years, will keep ya posted...but anyway, this bad pain from antivirals...dunno what to do
 

SOC

Senior Member
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7,849
thanks you guys for input
you know it might be valtrex, sorry, get them mixed up, but 6 of one....

I have been pulsing it since like 2008 and nothing bad has happened yet...been doing it more in last couple years, will keep ya posted...but anyway, this bad pain from antivirals...dunno what to do
There's a big difference between Valtrex and Valcyte. Valtrex doesn't work for CMV or HHV6. It's much easier on your body than Valcyte, so you don't want to be taking it if you don't have to.

My ME/CFS specialist says her office is seeing quite a bit of Valtrex-resistant herpesvirus (I think she was talking about EBV) from people not using Valtrex properly.
 

SOC

Senior Member
Messages
7,849
Prevention of CMV Disease in Transplantation:
Resistance was studied by genotypic analysis of CMV in PMNL samples collected i) on Day 100 (end of
study drug prophylaxis) and ii) in cases of suspected CMV disease up to 6 months after transplantation.
From the 245 patients randomised to receive valganciclovir, 198 Day 100 samples were available for
testing and no ganciclovir resistance mutations were observed. This compares with 2 ganciclovir
resistance mutations detected in the 103 samples tested (1.9%) for patients in the oral ganciclovir
comparator arm.
Of the 245 patients randomised to receive valganciclovir, samples from 50 patients with suspected CMV
disease were tested and no resistance mutations were observed. Of the 127 patients randomised on the
ganciclovir comparator arm, samples from the 29 patients with suspected CMV disease were tested, from
which two resistance mutations were observed, giving an incidence of resistance of 6.9%.

I found this about valcyte resistance, interesting?

http://www.roche-australia.com/fmfiles/re7229005/downloads/anti-virals/valcyte-pi.pdf
Yes, that's with people taking Valcyte properly -- for 3-6 months. I think the concern is more about taking only 2-3 weeks at a time. It's just like antibiotic resistance -- you don't take it long enough and you only kill off the weak ones and leave the ones more resistant to the antimicrobial to propagate. Then you end up with (and potentially transmit to others) a strain of the virus that is not susceptible to the med. Not good since we don't have many options with antivirals.

But honestly, I don't think we know enough to be sure about any of this with regard to antivirals.
 

heapsreal

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Also I think to really avoid the type of drug resistance from things like pulsing etc then dosing valcyte once or twice a day could also cause resistance as the half life is so short, there would be periods during the day when valcyte would be negligible. Thats why I dont think its as big of an issue as say abx. Also unsure if antivirals would have any effect on dormant viruses. My thoughts are that they only work on reactivated viruses that are replicating.

We just dont know I guess. We also need antivirals that kill viruses not just stop replication as we will never truly clear these infections.
 

Tristen

Senior Member
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Location
Northern Ca. USA
Years ago when I tried Valtrex, I did get more ill, but don't recall an increase in pain. I thought it was herxing, if that's even possible with viral die off. My understanding is that yea, there's a huge difference between vatrex and valcyte.......not only is valcyte more potent with a greater potential for toxicty, but also with it's kill power. My doc told me that Valtrex is worthless for tx cmv. Likely true for hhv6 too.

Your probably aware that pulsing is quite common with Lyme tx, but that's antibiotics treating bacteria.
 
Last edited:

minkeygirl

But I Look So Good.
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Left Coast
With Famvir I had bad back pain that was too much on top if other back spasms I was having so I stopped

When I started valtrex I had back pain the first day and then again when I raised my dose. With valtrex I have a bunch I'd other bad side effects. Agitation is big. I stopped for a week to see and it got much better.

I also had back pain with oxymatrine

There is a doc who said taking breaks was ok. I can't remember who it was though. He also said it would help those who had to spend a lot a meds.
 

xrayspex

Senior Member
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Location
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minkey girl did your doctor or yourself come up with hypothesis on back pain with valtrex? I can get a similar pain now from ibuprofen too....my body is really reactive...I am trying to use food as medicine more these days...and other natural methods
 

minkeygirl

But I Look So Good.
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Location
Left Coast
@xrayspex, if you look at the side effects of Valtrex, it says lower back pain is a side effect. I'm not sure about Famvir but it was pretty easy to determine that it was from that. I also had the same problem with Oxymatrine. The Valtrex problem went away pretty quickly. If I wasn't having other issues with back spasms I'd be on the Famvir.

I also think Heaps said that he had a lot of pain when he started Valcyte.

I just think it's the virus not being very happy.
 

xrayspex

Senior Member
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Location
u.s.a.
I suspect its the virus not being happy too although I think it could be the kidneys not being happy too
:) i didnt just google to make sure but valtrex detox process might involve kidneys more than liver
 

SOC

Senior Member
Messages
7,849
Lower back pain from meds can be related to kidney issues related to inability to process the med well....or something like that. :confused: I can't take Codeine because of that problem. I think one is supposed to call the doc if one has lower back pain with any med since it could be a serious prob.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Couple of things Xrayspex but not sure how useful they will be.

I remember the original Acyclovir research done by Strauss and how some of his patients developed "acyclovir-induced nephrotoxicity and were withdrawn from the study". At that time CFS doctors who were using Acyclovir said that Strauss didn't tell patients to take lots of water with the drug. My own doctor who prescribed Valtrex told me to take lots of water. I've not had an increase in pain so far (it's been a few years on Valtrex now)

Something I read about a trial of Valtrex and Celebrex for FM recently got me thinking. I had an accident and developed terrible pain due to that (pre-Valtrex) and the drug that has helped most with this is Celebrex. The new doctor I saw who prescribed this says he thinks it is the immune system effect that is helping his FM and he's interested in these drug trials. By luck, this seems to be the combo I am on now and the pain/stiffness is getting better.
 

SOC

Senior Member
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7,849
At that time CFS doctors who were using Acyclovir said that Strauss didn't tell patients to take lots of water with the drug. My own doctor who prescribed Valtrex told me to take lots of water. I've not had an increase in pain so far (it's been a few years on Valtrex now)

Good point. My docs who have prescribed Valtex were also very insistent that I drink lots of water. I've been doing it so long it's just habit, so didn't even occur to me as a possibility for Valtrex-associated lower back (kidney) pain.