valtrex/artesunate...can antivirals cause die off pain?

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Jul 22, 2009.

  1. simonedb

    simonedb Member

    Does anyone have experience/knowledge on that? If so, know how much and how long is ok to tolerate, any rule of thumb (as if any rules exist w/this stuff :).
  2. ladybugmandy

    ladybugmandy Member

    i've had die-off throughout my 2 1/2 yrs of antivirals. in fact, most of my days are spent in what i believe is die-off. cuz then i will have 2 "good" days.

  3. simonedb

    simonedb Member

    thx for info you guys
    geez its hard to gauge when having a bad reaction to a med or part of the healing process.
    i am thinking of my friend who had hepatitis and took bunch of hardcore meds and was homebound in pain for like 6 mo.s cus of it and hair fell out etc but she got better and was worth it. i dont feel like i know when its worth it to keep with a treatment sometimes. and i can't always tell the difference between spinal issues that are structural problems or weird pains in spine from allergies or wrong meds etc sometimes feels the same.
  4. heapsreal

    heapsreal New Member

    It is hard to judge how treatments etc are going or your going through a cold/viral infection. I think changes happen long term and hard to notice because cfs is so up and down but i just stop and think how i was functioning 6-12 months ago and yes i have improved as im more active and getting more done etc(able to work full time now). Still have some downs but not as low or last as long and the ups are up higher, if all that makes sense. This has all been since taking famvir in november 2008 and the last week have added acyclovir to see if i can get that bit more improvement.

    Keep in touch simonedb on how you go.
  5. simonedb

    simonedb Member

    heya heapsreal
    so how do you decide which abx to take, at what dose for how long? I am curious what you based your protocol on.
    I am trying to remember if it was doxy or amoxy that seemed to make me feel better the day i went to dentist.
    i dont nec. want to take hardcore abx for long time as i do heed dr cheneys warnings about messing with the good flora in the gut.
    i am also amazed at how easy apparently one can get abx without going to a clinic.
  6. heapsreal

    heapsreal New Member

    the stealth bugs/bacteria that have been found in alot of cfs patients are chlamydia pneumonia, mycoplasma, rickettsia and tic bites etc. These bugs dont have cell walls so bacterialcidal abx like amoxacillin kill bacteria by damaging the bug cell wall, so these abx arent affective against these 'stealth bugs'. Bacteriostatic abx interfere with bugs ability to replicate divide and grow so they have an affect on these stealth bugs, abx like doxycycline and azithromycin can affect on stealth bugs. By the way, they are called stealth bugs because they are hard to pick up on blood tests, alot of false negatives come from blood tests.

    So treating these bugs can help, not neccassarily a cure, maybe there opportunistic bugs and play avoc when our immune systems are down. The general protocol of doxy would be 50-100mg every second day and slowly build to 100-200mg a day, this is done as there can be an initial die off that can make you feel ill, so build up slowly. If feeling bad its ok to take a day or 2 off to have a rest from abx. If take abx in the morn then take acidophylis at night and for several weeks after finishing abx to help replenish the good bugs in your gut. Dont take minerals at same time as abx as they interfere with how they work

    They usually recommend 6 week courses and if symptoms return do another 6 weeks and so on. Have a google, look up dr garth nicolson who has a few antibiotic protocols.
    It is a trial and error thing too, mixed in with an educated guess.

    Good luck, keep in touch
  7. simonedb

    simonedb Member

    thx for the good info
    so I was messin around more seriously with valtrex and artesunate the last couple weeks, sorta pulsing sorta haphazard sorta not but then again yes....
    but then got into this bad pain spiral and couldnt tell if I had irritated my spine or if it was related to experimenting with them so stopped taking them and took charcoal and pepto bismal a couple days in case toxins and wow today felt better than have in along time, not bad pain and pretty good stamina.
    so now i am wondering if it wasnt spinal pain but something related to either the valtrex or artesunate. and i dont know how to interpret it, if they hurt but helped or just hurt and now i feel better cus i stopped.

    oh so i am curious if you think antivirals and abx sometimes get at the same thing in dif ways and whether you have considered doing both.
    [This Message was Edited on 07/25/2009]
  8. ladybugmandy

    ladybugmandy Member

    what type of spine pain do you get?

    i get very strange sensations in the back of my head, deep inside, while i am on antivirals. i lilke to think it is viral die-off.

    i also get some weird feelings in my upper spine.

  9. mezombie

    mezombie Member

    I haven't closely followed what you've been doing, but your posts on this thread have me intrigued.

    I am on antibiotics for mycoplasma and tick-borne infections, and have seen a bit of improvement in energy (physical endurance) over the past few months. But that's all.

    The thing is, my cognitive problems are still severe. I could barely read your posts! The abx prescribing doc insists my problems stem from TBIs and that any viral reactivation will subside with time. Maybe. I've done things his way for a year now.

    The thing is, my brainfog cleared up substantially on Acyclovir many years ago. Unfortunately, the stuff stopped working after about 2 months. (I have lab results suggesting reactivated EBV and HHV-6).

    What do you think of Valtrex on top of three abx as well as an antimalarial?

    Part of me wants to add Valtrex, yet part of me feels I may be putting quite a strain on my body already.

    And the idea of having a brief respite from Valtrex, only to have it, too, stop working is...well, would be heartbreaking.

    Any thoughts on this would be appreciated.

    [This Message was Edited on 07/27/2009]
  10. heapsreal

    heapsreal New Member

    i think its possible to have both a chronic viral infection and chronic bacterial infection. My cfs started from viral infections(chickenpox and ebv) I have had good response from famvir and in the past have had some symptom improvement with antibiotics. I believe my cfs is ebv reactivation and when this occurs can make us prone to other infections because our immune systems are down and bacteria that normally dont cause problems to healthy people like mycoplasma can get a foot hold and run wild, so to speak. I think it could also go the otherway where a bacterial infection can cause ebv to reactivate too.

    I dont think theres any real way to know other then a theraputic trial, in others words have a go. If on valtrex I cant see any harm in trying doxycycline for 6 weeks and see how you respond and maybe down the track try it again and judge for your self if its helping, doctors just cant test these things properly, trial and error is the way, within healthy reason. There's a few on this board who take antivirals and antibiotics without any harm and if under a doctor make sure you get regular blood tests and monitor liver function and immune system through lymphocyte testing which can give us an indication that our bodies are fighting some type of infection.

    ALSO HAVE TO REMEMBER to take probiotics during and a few weeks after abx course to help good bacteria in the gut. Theres also a possibility that abx help through reducing inflammation as they have anti-inflammatory properties(doxycycline/minocycline). All this info is stuff i have researched and tried as well as coming from a medical back ground which helps in 'trying' to join the dots.
  11. mezombie

    mezombie Member

    So how long have you stayed on Famvir? Are you taking it on and off, or pretty continuously?

    In my case, I'm on abx for the long-term (already a year-gulp!) as the only doc I could find nearby is an LLMD and as far as he's concerned EVERYTHING is caused by Lyme. (sigh)

    LLMDs seem to think the tick-borne bacterial infections allow viruses to reactivate, but that they'll go away if the bacteria are killed off.

    The vius-focused docs, like Montoya and Lerner, tend to see it the other way around, if they're willing to acknowledge that Lyme bacteria can cause long-term problems at all.

    How did you manage to find a decent doc? I mean, even if we figure out much of this on our own, we need someone to write the prescriptions and follow our bloodwork.
  12. heapsreal

    heapsreal New Member

    I have been on famvir since november 2008, and have had steady improvement, its not like a bolt of lightening type feel, 2 months down the track and i realised i hadnt crashed then 3 months then 4 and so on, until recently where i think i have just picked up a winter bug and trialed the azithromycin which has helped. I dont think im cured but its made a big difference which is hard to tell until i look at where i was pre antivirals.

    Im working fulltime now and it is tiring and do some exercise when i can, pre cfs was an exercise addict which i miss. After 12 months Im looking at stopping antivirals and see how i go. I will keep an eye on my lymphocyte levels as well as these have dropped since being on AV's although not within normal range yet. The famvir i take all the time as well.

    I have an intergrative doctor which means he's also into alternative stuff as well and he is up to date on cfs things so when i ask about trialling something i have read about he has usually already read up on it, he's open minded and willing to try things as long as they arent dangerous and we monitor it. I have worked as a paramedic for 20 years so i have a good knowledge of pharmamcology, anatomy & physiology and have encounted a few things in my time, we dont just drive people to hospital like most people think, lol. So i think maybe i can talk to my doc on a different level to most people, maybe? It is hard to find a good doc though, think i was lucky. I would suggest asking people on this board who are in your area about their doctors, might be of help.
  13. mezombie

    mezombie Member

    It is hard to find a good, open-minded doctor.
  14. simonedb

    simonedb Member

    thx you guys for info

    I stopped the valtrex and artesenuate to get a fix on the pain, and it did go away.
    my situation is complicated by spinal issues, injured neck and have stenosis djd so sometimes that causes pain but sometimes the m.e. or whatever does too, sometimes i can tell the dif sometimes i cant and sometimes i think they must trigger eachother somehow

    anyway, after a few days off those pain went away and then i tried wormwood/black walnut tincture again one night and the next day that bad pain in back came back, interesting cus wormwood is like artesunate. could be coincidences, going to keep experimenting. like i said the spinal problem makes it hard to separate out sometimes.

    i decided to call doc and report the pain possibly related to valtrex to get their feedback and the nurse said she had never heard of that, must just be "fibromyalgia", that goes against what you said though heaps, that the antiviral meds could cause pain as bad side effect and not just herx; she hadnt heard of that or herx. frustrating.

    heaps also i am curious what the doc does for you cus don't you get most of your meds off the internet anyway? sounds like you dont need the doc :)
  15. heapsreal

    heapsreal New Member

    Mostly the antibiotics of net and antihistamines like atarax(for sleep) that cant get in australia. The antivirals(most of my stuff) are from australian chemist. I think the medical community arent up with side effect of these drugs on people with cfs and generally they are only taken for 5-7 day courses where cfs people use it contineously for 6-12months. My doc said i could take antivirals when in a crash and sense ebv reactivating but when ever i went off i felt crappy and i would get pain in my neck/lymph glands which is a sign of ebv.

    Maybe you could take a 1000mg a day for 2-4 weeks with no artesenuate and then drop the dose to 500mg and see if that helps with pain or switch to famvir, thats if you think its the viral side of things getting at you.

    One thread i recently read was talking about head and spinal pain and mentioned it was from cfs/virus as ebv/hhv6 etc are located in these places and the original name me was very suited for it, myalgicencephalitis(spelling bad) which means brain/spinal cord pain and muscle pain. so it could be hitting the spot.

    How long have you been on valtrex, like i said earlier the effects are very suttle, i just relised i hadnt crashed and had small reduction in post exertional malaise which slowly improved, no real big increases in energy. Also look into artesenuate, maybe its a causing sides.

    Keep us updated, good luck
  16. simonedb

    simonedb Member

    thx heaps for suggestion
    have u read much about artesunate? curious why u favor valt over that?
    well i only tried valt for less than 2 weeks before it got weird, well on and off longer but just few days before that not much, i took it earlier in summer for like 5 days or so and felt better than usual, but pain came on this time when took it longer.

    yea thats interesting about the m.e. I have wondered about that. cheney's theory is that some folks with stenosis and chiari are inflamed from the m.e. and otherwise may not have become symptomatic with that structural stuff. i like that idea better than doing surgery.

    i dont get it though, whats the deal with getting awful m.e. pain when ya take an antiviral or abx, what is this herx business about if thats whats going on and how long should one tolerate it. guess thts the million dollar question. hell i am just going to go listen to wayne dyer or something and fuhged about it for a bit eh.
  17. heapsreal

    heapsreal New Member

    I tried antivirals for short periods acouple of times and didnt get much out of it, a little better on the famvir which is why i use it now, but after researching into it more, you need atleast a good 6 months on antivirals before you can say its not helping.

    The more i read about people and spinal problem from here the more im thinking my back problems are related to cfs/me also. I have had lower back problems off and on for years through weight lifting and contact sport(the odd strain) etc but not like i have lately. A RECENT ct scan says i have several bulging discs in my lumber spine, scans prior to cfs didnt show any of that and my exercise has been scaled way back compared to what it use to be, so i cant see how i could have injured my back since cfs. I get woken up through the night with back pain and struggle to roll over etc. Maybe the antivirals are causing a die of in the spinal cord, makes sense, they struggle to find herpes viruses in blood test, maybe if the did a spinal tap the stuff might start oozing out, lol. People forget the spinal cord and brain are connects and bathed in the same fluid which could host viruses.

    Artesunate i havent really looked into yet, i know here in australia is expensive same with avemar which is suppose to be helpful with these viruses. Another thing you might be interested in is inosine, it is an amino acid version similar to immunovir, a few cfs guru's say theres not much difference just alot cheaper. I have used it in the past and on it again now, i find it does help alittle and for the price just through it into the mix, costs me about $8 for 500mgx100 from

    keep in touch
  18. simonedb

    simonedb Member

    yea that georgetown study that sounds good they do spinal tap, I think those in the know with this stuff are onto it a little bit.

    wow thts good price on inosine! i have some of that too, didnt think i liked it cant remember why but meaning to experiment with it again. i tend to react to lots of stuff and so have to keep experimenting to make sure what did what, takes long time to try to gt to some sorta baseline again first.

    its interesting now that i think of it my dog has terminal cancer and they gave her this chemo called asbar or something like that, cutting edge, can only do it a couple times cus then it turns dangerous and it kills the cancer and the 2nd time they gave her a shot of it the next day she was writhing on the floor in pain crying, I had to take her back for sedative shot, it lasted a day or so, they said it was likely cancer die off causing pain from the chemo. maybe its analagous to that. I still dont know enough about that sort of science to understand what the actual mechanism is causing pain in these scenarios though. what is actually dying and why does it cause pain ie say if virus in spinal fluid which i wouldnt doubt. yuck though.