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Thought on AVs and die off's

heapsreal

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10,089
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australia (brisbane)
Theoretically we arent suppose to get a die off reaction from avs as they only stop the virus from replicating but people do seem to get some type of reaction from them. Herpes viruses avoid our immune systems by lowering our ability to make interferon, interferon has antiviral properties and also strengthens nk function, so these viruses lower our ability in some of us(cfs people) to overcome them and supress them. My thinking is that with av's we lower the viral load, with this lowered viral load is the reduced suppression of our interferon production, so our interferon production is increased and our nk function is increased so our immune system is able to again start to fight these viruses. While fighting these viruses our body produces inflammatory cytokines etc that can make us feel crappy and give us die off type symptoms, painful glands etc

I think if u can keep soldiering on these symptoms will fade but if they dont then maybe have to consider lowering the dosage or taking a break for a week. if having alot of reactions maybe doing a 2 weeks on and 1 week off type regime and slowly increase the length of time on. As far as resistance to avs go, i dont think it would be common as these drugs are used alot for other herpes infections in short cycles of 1-2 weeks with off periods and then repeated again etc and there doesnt seem to be any resistance problems with them.

These are just my thoughts after recieving a PM from someone wanting to know about die off reactions to AV's.
Anyone have any other thoughts? please post.

cheers!!!!
 
Messages
19
I think that I am having some sort of die of heapsreal! I actually have increased dose for 5-7 days thinking that it may quicken the process. Your thoery is interesting I just wish we had access to better testing in Oz to see what is going on in our bodies. I have asked my GFP to email my blood results and give your GP a call. I would like to know what was happening to my basw line bloods!
 

heapsreal

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Messages
10,089
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australia (brisbane)
Has increasing the dose changed anything?? So have u got your lymph subset results yet? Testing here is very limited, we are flying blind compared to others. If we could get viral titres measured, that would be good but i dont think the govt want to pay for antivirals under the PBS, thats why they keep saying igg titres are just a past infection, its just crap. If xmrv stuff catches on in australia it could change things for us.
 
Messages
19
XMRV may be the key to the two things that plague my family, CFS, and autism all in my generation and done, Oh and Cancers in my parent generation! I thought of emailing the makers of Famvir and tipping them off what people re using them for???

Am nursing the mother of all headaches with stiff neck and swollen glands, a valium has esed the pain nurefen didn't touch it. Interestingly sore throat is now only mild. Saw physio which has helped a little. Will stick with my plan and cut back on Wednesay!! At least I will get 150% loading on Australia Day and will work under any duress!

Night

Beth
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Sometimes u have to think of the money Beth, its not cheap having cfs. I think valium is a good drug for cfs as it helps sleep, pains, muscle spasm, tired wired feeling, helps with lots of things. The painful neck glands is a bit of a giveaway the ebv/cmv are playing up. I find financially just try and get through work and rest every other minute of the day, dont even think of exercise until your feeling alot better, maybe a short stroll but thats it. I have found lyrica a good med for when feeling crappy, but i dont use it all the time, good for nerve pain which i think is how herpes viruses cause their problems. Just a financial tip, look at maybe getting some part time work at a medical centre as they get heaps of free meds from drug reps like lyrica etc it all helps financially.
 

guest

Guest
Messages
320
I want to throw in my two Cents as well. How do you know that you have a "die off" reaction? The problem is, you don't. In my eyes you just look for a optimistic explanation for bad side effects. Viruses are much smaller than bacteria and are intracellular. How are they supposed to cause a herxheimer reaction? Do they die off so quickly that the body suddenly starts producing interferon again? Do we have any really good working antivirals? Not to my knowledge.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Im not saying they die off but replication stops and this reduces viral load which inturn helps interferon production which causes symptoms from the immune system like cytokines inflammation etc. All this is just a stab in the dark to try an explain why some people feel worse on av's.
 

m1she11e

Senior Member
Messages
333
Location
Florida
Yes, this is a huge mystery to me. We all know that anti virals are not causing a "die off." For most there IS a worsening of symptoms though. I still am confused as to why only 1 Valcyte, one little pill, made me VERY sick. When I was trying to take it even my doctor tried to tell me it was killing off the virus and I had to back off to let all the dying virus clear from my system and hit it again. I get so sick of correcting my doctor that I didnt bother telling me that it stops viral replication and doesnt kill the virus at all. :-0 We really are in the dark here!!

Regardless, I have seen people get a "sicker than before" reaction on anti virals. Valcyte kicked my butt and I gave up after about 12 pills with breaks in between them. Famvir at 500 mg, three times a day never caused any "sicker before better." So, that kind of blows all the theories. I have heard that most doctors are having people back off of anti virals if the worsening gets too bad though and slowly working back up.

As far as contacting the Famvir people (I read this some where that some one thought they should), I was told it would cost way too much money for them to go back to the drawing board and get it approved for other Herpes virus'. Maybe we dont even know how these anti virals really work or dont work.

There is 2 worthless cents....
 

alice1

Senior Member
Messages
457
Location
Toronto
I started Famvir 5 days ago and was doing just fine until last night.I felt so lousy I took several ativan to stop the panic.Today has been a pretty decent day I'm happy to say.Did all my errands,had a visit with a friend and am only now ready to take a wee nap.I have no explanation to any of it but maybe it also kills off certain co-infections.Who knows but I'm so grateful for today.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Yeah, i think theres something to famvir. I think valcyte is probably just to toxic, probably the liver struggling to break it down. I have tried famvir at higher doses but didnt find any difference with 250mg twice a day which is good for me and my bank balance. It would be good to question the makers of famvir. I would also like to know where the author of 'reviving the broken marrionette' got the info that famvir has effect against retroviruses and this was before the xmrv craze. Plus it also is said to work against hepitittis B, so it probably works against alot of other things we dont know about, anyway im a supporter of famvir.

cheers!!!

Yes, this is a huge mystery to me. We all know that anti virals are not causing a "die off." For most there IS a worsening of symptoms though. I still am confused as to why only 1 Valcyte, one little pill, made me VERY sick. When I was trying to take it even my doctor tried to tell me it was killing off the virus and I had to back off to let all the dying virus clear from my system and hit it again. I get so sick of correcting my doctor that I didnt bother telling me that it stops viral replication and doesnt kill the virus at all. :-0 We really are in the dark here!!

Regardless, I have seen people get a "sicker than before" reaction on anti virals. Valcyte kicked my butt and I gave up after about 12 pills with breaks in between them. Famvir at 500 mg, three times a day never caused any "sicker before better." So, that kind of blows all the theories. I have heard that most doctors are having people back off of anti virals if the worsening gets too bad though and slowly working back up.

As far as contacting the Famvir people (I read this some where that some one thought they should), I was told it would cost way too much money for them to go back to the drawing board and get it approved for other Herpes virus'. Maybe we dont even know how these anti virals really work or dont work.

There is 2 worthless cents....
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've been a Valtrex for a while. No sign of any die-off reaction and real help with ME symptoms. Imunovir also - no die off.

I've never had a herx or die off reaction that I have felt better after. Antibiotics and many supplements have caused a downturn in my health that last for a very long time after I stop.

Hope the ARV's are as good as the AV's have been for me (fingers crossed and hoping!).

XMRV+
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Hi ukxmrv

What dose of Valtrex are you on? (Apols if you've told us this before!)

Jenny
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Sometimes u have to think of the money Beth, its not cheap having cfs. I think valium is a good drug for cfs as it helps sleep, pains, muscle spasm, tired wired feeling, helps with lots of things. The painful neck glands is a bit of a giveaway the ebv/cmv are playing up. I find financially just try and get through work and rest every other minute of the day, dont even think of exercise until your feeling alot better, maybe a short stroll but thats it. I have found lyrica a good med for when feeling crappy, but i dont use it all the time, good for nerve pain which i think is how herpes viruses cause their problems. Just a financial tip, look at maybe getting some part time work at a medical centre as they get heaps of free meds from drug reps like lyrica etc it all helps financially.

Something else that Valium (low dose) is good for is that it stimulates appetite. It is used for this purpose often in elderly patients that might have tendancy to not eat as much or as often as they are suppose too.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I had a die off type reaction from antibiotic doxycyline too, it did get me out of a hole a few years ago so maybe i had some type of bacterial infection back then, have tried it again since but it hasnt really helped.

Cool your on ARV's, make sure u keep us posted on how u go. are u going to keep the av's going and imunovir??

I've been a Valtrex for a while. No sign of any die-off reaction and real help with ME symptoms. Imunovir also - no die off.

I've never had a herx or die off reaction that I have felt better after. Antibiotics and many supplements have caused a downturn in my health that last for a very long time after I stop.

Hope the ARV's are as good as the AV's have been for me (fingers crossed and hoping!).

XMRV+
 

ukxmrv

Senior Member
Messages
4,413
Location
London
No worries, I am on 1000mg per day only. Financial problems mean that I cannot afford more. It's love to try some Valctye.

Will keep going. Had Doxy many times over the decades but never a good effect sadly.
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
I agree. I know I had Epstein Barr in the 90's, I felt the same way. They would not test, saying that everyone over 30 had it. Well, I was tested in the fall and the titres were through the roof. Imunovir is helping a lot but I am going through another flu stage again. I understand that means it is working. Has anyone here taken it?
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I have Lyme and possibly viral coinfections (I'm relatively new to this so I'm not sure all the details). For the past week I've been taking various supplements for the immune system including elderberry extract, Larch/Arabinogalactan, and Noni juice which are supposed to have antiviral properties. I also started probiotics about 3 days ago. Although I'm exploring other possible causes such as a problem with my antidepressants, I've been really depressed the last few days. Generally I associate die-off with physical symptoms, but I recall being depressed sometimes when I've taken Pau D'Arco tea.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Antibiotic use for me has usually led to a lowering of mood and different emotional responses. It very obvious to an outside observer. My mood is normally good but with AB use I feel depressed, tearful and my normal resilience just isn't there. Stopping the AB leads me back to my normal self quickly.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Antibiotic use for me has usually led to a lowering of mood and different emotional responses. It very obvious to an outside observer. My mood is normally good but with AB use I feel depressed, tearful and my normal resilience just isn't there. Stopping the AB leads me back to my normal self quickly.
So theoretically probiotics could cause the same effect since they are supposed to kill the bad bacteria?