AV's are working

[heapsreal]

I have posted before how valtrex and famvir have made a big difference to me. Every few months i take a break, probably to reassure myself its helping and also just to see if i can function without them. Anyway just as in past experiences, within a week i started to feel like crap with return of cfs symptoms. It reminds me just how sick i was. So at the end of the week im back on valtrex, usually with a bit of a loading dose which is 1000mg twice a day for first day then 500mg twice a day, within 3-4 days Im feeling good, actually much better then before my break. This seems to happen in the past as well. I think there is something to having a break, maybe letting these little buggers reactivate again and letting the av's get a better hold of them. I know there was someone on the prohealth board who use to use av's intermittently with good success, Im just not too sure about doing it to regularly in case of becoming resistant to valtrex. I think i will just take breaks when im feeling abit below par after being 'on' for a few months as i think the short break helps the av's work better.

Hope this is of interest to someone, like to hear from others who have noticed something similar, or can explain this occurrence.

 

[cfs since 1998]

Thanks for posting this. I plan to start Valtrex in a few weeks, and will probably take 2-3g per day indefinitely. Dr. Lerner uses 4g/day and claims it is safe if you drink a lot of water.

I've been on olive leaf extract for over a year. I haven't improved much although I did have a huge herx for the first two months which included severe headaches, body aches, and other symptoms. Now I am fine. But if I stop the OLE, it comes back and within 2 days I get way worse. I think what happens is, when you start an antiviral, the virus temporarily reactivates because it is threatened. Eventually the antiviral works and the virus is inhibited. If you stop the antiviral, the virus reactivates again because there's now nothing inhibiting it. ??? If this is what's happening, I suppose starting and stopping antivirals every now and then could deplete latent viral reservoirs, although I wouldn't do it too often. Maybe no more than twice a year.

And this was something interesting I found. Maybe the word "herx" that many of us use is inaccurate and it is something called Immune Reconstitution Syndrome (IRS/IRIS). Ironically enough this is seen in people with a certain infamous retrovirus, HIV. From the Wikipedia article Immune reconstitution inflammatory syndrome: (sorry if this is off topic)

Immune reconstitution inflammatory syndrome (IRIS) or immune reconstitution syndrome (IRS) is a condition seen in some cases of AIDS or immunosuppression, in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.​

 

[flybro]

heapsreal i find this with anitbitoics i am on

but i am on a low dose, but at the moment i am the healthiest i have been in years.

Although i cud still be experincing a steroid high, but fingers crossed.

and totally chuffed that the av's are gud for u.

i can smell the cure.

 

[fingers2022]

I have posted before how valtrex and famvir have made a big difference to me. Every few months i take a break, probably to reassure myself its helping and also just to see if i can function without them. Anyway just as in past experiences, within a week i started to feel like crap with return of cfs symptoms. It reminds me just how sick i was. So at the end of the week im back on valtrex, usually with a bit of a loading dose which is 1000mg twice a day for first day then 500mg twice a day, within 3-4 days Im feeling good, actually much better then before my break. This seems to happen in the past as well. I think there is something to having a break, maybe letting these little buggers reactivate again and letting the av's get a better hold of them. I know there was someone on the prohealth board who use to use av's intermittently with good success, Im just not too sure about doing it to regularly in case of becoming resistant to valtrex. I think i will just take breaks when im feeling abit below par after being 'on' for a few months as i think the short break helps the av's work better.

Hope this is of interest to someone, like to hear from others who have noticed something similar, or can explain this occurrence.

Thanks for the info HR, I imagine it's of general interest.

Do you experience any side effects? What does it say on the tin about these?

Do you get the drugs free?

All the best, hope you continue to win the battle.

F

 

[clive powney]

Heapsreal, Good to hear you are doing well. Have you had some specific tests done that pointed you towards valtrex , or are you like many others here (and me) you have basically tried everything else ?? Do you get your drugs from cipla or magicpharm????

regards and best wishes

Clive

 

[heapsreal]

I get my meds through 4RX, i havent had any side effects at all from av's(18months on), last blood test showed my liver function was normal as well. My cfs started with chickenpox and ebv and since then have had elevated lymphocytes(lymphocyte subset test), so going the antiviral route was an educated guess so to speak with symptom improvement correlating with blood test improvement. Antivirals dont kill viruses they only supress the virus from reactivating, so probably a med i will have to stay on forever to feel well.

 

[aquariusgirl]

Curious whether any of you ran or are running tests to show the immune system is in good shape to fight these viruses.

I feel the need to kick things up a notch but am concerned about the toxicity of antivirals and wondering if the timing is right,... ie whether I am in any shape to kill these bugs...

CFSsince1998...it will be interesting to see how you respond.. sounds like the herbs just aren't powerful enough?

 

[Andrew]

I know there was someone on the prohealth board who use to use av's intermittently with good success

I've heard of this too. The idea was to spend X amount of time on, then X amount of time off. I just can't find the info now.

BTW, did you test positive for any of the routine viruses that are associated with CFS?

 

[jackie]

Heapsreal...Your last sentence post#6 (I don't know how to do the highlight thing yet!) That's exactly right...and I'm so glad somebody else feels the same as I do!

When I started av's (acyclovir...per my Neurologist, pending an appt w/I.D. doc)...I asked him how long I would need to stay on them...he said probably for my lifetime (although he was assuming the dose would be 800mg.)

I was soon "turned over" to the ID Dr. for long term treatment - I was titrated up to the maximum 3200mg. (nearly 4 yrs.) and I've never asked if I could EVER stop - although we do discuss REDUCING the dosage (I've asked how much longer I can stay at this max dosage..he is vague (I don't think anyone really knows for sure)...its been mentioned maybe another year at best before reducing.

This is what I FEEL...I will never be able to stop...just hoping to get down to say 800mg. When I have tried to reduce in the past..I feel terrible (symptoms exacerbated immediately).

And at this point in time (i do have chronic shingles with the rash always present - I'm sure this makes a big difference) I've been advised to NOT try and titrate down until I've started an immune modulator with the AV.

I had a peroiod of time during the second year on the highest dose of AV where my liver enzymes got really wonky...we (I should say "I") tracked them for about 6 months and they leveled off to the normal range. Kidney function ok.

I've searched for anectdotal info on long term acyclovir...it's so hard to find (think I read of 20+ year use...might have been in aids patients in addition to hiv drug regimine).

I don't care about any "studies" that say acyclovir doesn't do any good (as I can attest that it does, for me anyway...I've done nothing else differently for 4 years)...I'm only concerned with the safety factor in long term use.

I'm "stuck" I think....like you, Heapsreal, I believe I will need it to supress viral activity for my lifetime.

Personally, I can't imagine "pulsing" (from past experience I think I know what would happen to me. Although every once in a while I'm tempted to simply stop and "wait it out". If I was braver - I would!)

I hate having to take so much of this - and I wonder what it may mean over time (AND I don't like the idea of starting an I.M. like Equilibrant or Oxymatrine and perhaps needing THAT forever as well, but I'm going to give it a shot).

Secretly...I feel like all my docs figure that since I'm older (59) I'll just conveniently die of something else before too long...and they won't have to deal with me or my endless questions. That's just how I feel.

BTW...I'm somewhat worse physically (in all ways) BUT...I must credit the AV with an improvement in my memory and my cognitive abilities (I sort of got my brain back!)....and I think I rebound from PEM more quickly. To me, that's priceless.

good luck to everybody....jackie:Retro wink:

 

[heapsreal]

hi jackie, have u thought of asking your doc about changing av's, the newer ones are stronger at a lower dose where i think they might be better for your liver etc on a longterm basis, valtrex or famvir, famvir is what i started on but only changed due to price, famvir is suppose to quite good for shingles and once this is down switch again to valtrex. Your response like having your brain back is sort of similar to mine, just waiting for the other 1/4 now, lol, and yes bounce back from PEM.
I know its not normal to keep having these herpes infections active all the time, so im looking into other aspects as to why, eg my dhea levels were quite low so maybe i have adrenal fatigue so maybe fixing this will help my immune system to suppress the virus when off av's. I do have other hormones out of whack slightly so will investigate that further.

cheers thanks for the reply Jackie

 

[IntuneJune]

Anti virals and Mikie

Heapsreal,

Was it Mikie from PH you were referring to???? She used to post about "herxing" and pulsing her antivirals.

She registered here but has not posted since November.

To tell you the truth, if she were doing THAT much better, and knowing her, I believe she would post not to worry about her.... that she was so improved, she would be moving on.

I am hoping though, that is the reason we have not heard from her.

June

 

[cfs since 1998]

I have posted before how valtrex and famvir have made a big difference to me. Every few months i take a break, probably to reassure myself its helping and also just to see if i can function without them. Anyway just as in past experiences, within a week i started to feel like crap with return of cfs symptoms. It reminds me just how sick i was. So at the end of the week im back on valtrex, usually with a bit of a loading dose which is 1000mg twice a day for first day then 500mg twice a day, within 3-4 days Im feeling good, actually much better then before my break. This seems to happen in the past as well. I think there is something to having a break, maybe letting these little buggers reactivate again and letting the av's get a better hold of them. I know there was someone on the prohealth board who use to use av's intermittently with good success, Im just not too sure about doing it to regularly in case of becoming resistant to valtrex. I think i will just take breaks when im feeling abit below par after being 'on' for a few months as i think the short break helps the av's work better.

Hope this is of interest to someone, like to hear from others who have noticed something similar, or can explain this occurrence.

Are you taking anything else heapsreal? You suggested Echinacea to someone in another thread. Are you taking that or any other of the "immune boosting" supplements?

 

[heapsreal]

your right intunejune, it was mikie, she also used transfer factors too and immunovir, i think? I never had any herxing from av's though.

cfs98 I take astragalus to help strengthen my immune system, my doc recommended me to do this at one stage when my cd4 lymphocytes were low as this can indicate the immune system is getting tired, and it worked at increasing these lymphocytes although i didnt notice anything inparticular from it, i use it for 6-8 weeks then have a break from it. Low cd4 lymphocytes is a measurement they use in aids patients to say they are hiv positive or negative, dont quote me.

Most of the supps i take are for general health like high dose vit e, NAC, lipoic acid, fish oil, antioxidant type stuff. I dont think theres any particular supplement that has a direct affect on cfs, i think its a matter of just trying to keep your body as healthy as you can with supplements. Other meds i use are sleeping tablets etc as i dont sleep well at all, also just started taking DHEA as a recent blood test showed i was quite low, its only been a few days but im starting to feel more energetic, hope i overcome this konking out at 3 o'clock. Also was low in vitD but have corrected that with supplements from prohealth 50000iu tablet i take every couple of weeks, this has increased my blood levels but i didnt find any noticable improvement with this.

The av's and sleep medications been my biggest help, getting me to the 90% range, so now Im hoping that the dhea can give that extra 10%.

 

[cfs since 1998]

cfs98 I take astragalus to help strengthen my immune system, my doc recommended me to do this at one stage when my cd4 lymphocytes were low as this can indicate the immune system is getting tired, and it worked at increasing these lymphocytes although i didnt notice anything inparticular from it, i use it for 6-8 weeks then have a break from it. Low cd4 lymphocytes is a measurement they use in aids patients to say they are hiv positive or negative, dont quote me.

Most of the supps i take are for general health like high dose vit e, NAC, lipoic acid, fish oil, antioxidant type stuff. I dont think theres any particular supplement that has a direct affect on cfs, i think its a matter of just trying to keep your body as healthy as you can with supplements. Other meds i use are sleeping tablets etc as i dont sleep well at all, also just started taking DHEA as a recent blood test showed i was quite low, its only been a few days but im starting to feel more energetic, hope i overcome this konking out at 3 o'clock. Also was low in vitD but have corrected that with supplements from prohealth 50000iu tablet i take every couple of weeks, this has increased my blood levels but i didnt find any noticable improvement with this.

The av's and sleep medications been my biggest help, getting me to the 90% range, so now Im hoping that the dhea can give that extra 10%.

Thanks. I think I might add astralagus to my protocol. I've heard good things about its immune modulation properties second hand but never really looked into it. I found a few interesting studies. In one controlled study it improved Th1/Th2 immune balace in patients with herpes keratitis. It seems it might also have direct antiviral properties. A search of pubmed revealed studies in which it inhibited herpes simplex virus in vitro (however, it says the IC50 was about 1g/ml, that is very high, maybe a typo? it was translated from Chinese) and coxsackie B3 virus in mice in vivo.

Most of the other things you mentioned I have tried but have side effects from them, but maybe as I slowly improve I will try them again. Anyway, thanks again for sharing your experiences. Not enough people that improve keep hanging around the CFS discussion to tell us about it. Hopefully you will be able to get that last notch back.

 

[heapsreal]

As i have mentioned previously, my lymphocyte subsets have been out of whack, probably due to reactive ebv and helped by antivirals. Anyway i am in a cfs study here in australia where there is a cfs group and a healthy control group and they are study natural killer cell function. Results of our 6month blood test shows most of us in the cfs group have poorly functioning natural killer cell function, mmmm maybe we're not just 'depressed'. So the dr's helping run the study have suggested that because of this we are more prone to ongoing infections, i know this is stuff we probably already know but its more validation that our immune systems are not working and may explain why different infections are connected with cfs, it may not be the infections as such but our immune systems or it just maybe xmrv upsetting our immune systems making us prone to all these different opportunistic infections.

I think we are slowly getting close to an answer to our questions on cfs, just hurry up, lol.

cheers!!!

 

[Sunday]

Glad to hear there are some tests going on; even if we already know this stuff, the rest of the world doesn't seem to. Good luck!

 

[heapsreal]

hi all, I have been feeling abit crappy/rundown of late, then not long after my lymphocyte test showed they were all elevated, which my doc explained to me that the av's dont stop it from reactivating but from infecting other cells, well i hope those other cells are feeling better then me, lol, then after struggling through the working week with a sickie in there, i got man flu bad, 3 days in bed with a box of tissues, antihistamines and some panadeine. Them back to work, first few days not to bad, but then started to drag my feet. Wedding anniversy was coming up this weekend we had planned away, well the thursday before i worked 2pm till mignight, slept ok but woke up with the gastro bug from hell. My wife was out at that moment when i didnt know whether to put my head down the toilet or sit on it, lucky i practised all those forward rolls in school gymnastics, lol. I was in the shower when she walked in, "dont go in the toilet"! if u see it u clean it, lol.

So we managed to cancel one night and wing the next. All day my brain was throbbing and after a few bout of my belly button touching my spine it was time to jab myself with maxolon for the nausea-belly-button touching spine SYNDROME. Well this eased this part, next these chronic bloody headaches, i thought of going to hospital ,but temp was normal, later after my wife worring about an anuersym(her cousin recently went through) I thoight i would do the next self doctoring, wife darling when i take my head out of this green bucket can u take my BP, it was 130syst, picture of health. She then asked me what they would do for me in hospital, being a paramedic i have a good idea, sit outside with this plastic bag and have 2 panadol, doctor will see you in 3-5 hours. I said to my wife i have a few things up my sleeve, Im going to lie down with cold pack on my head, then a cocktail of neurontin, valium and mersyndol, this bought the pain down to a dull roar and was then able to yell at the kids to shut up, lol. Bed time not long after. When i woke i was feeling ok and getting better. We made a dash for the casino to have a quiet night, well within half hour that wasnt going to happen, they bought in a bottle of plonk on ice, i laughed, the bottle was called summersault, hoping it wasnt the same thing coming out of me the night before when i was suumersaulting, lol. It was a good enough drop and we were out having a dabble and a few drinks. It was good because we havent done that in awhile any we nilly mist it

 

[heapsreal]

sorry the moral of the storey is im feeling rundown, also have constant cold/flu thing and got the 24hr gastro bug from hell and my recent blood test shows my immune ststem is working overtime. So after all this im looking into going back to work part time so i can enjoy some of life, but with less money, probably look for some casual type of work for when i feel well etc. When i have these crashes my sleep is crap(it could be alot more desciptive if we could use swear words,mmm). The 3462 different type of sleepills dont work, its like watching pay tv with 300 channels and theres nothing on. Its all about ups and downs, just crawling along to get to the bottom of the up, rest awhile, then start heading up.

cheers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Sallysblooms]

It would be wonderful if there was an antiviral that would actually get rid of the worst viruses. Building up our immune system is the best hope. Among many things, I take Mushroom drops and Proboost Thymic A. I think if I would have known about them when I had surgery can caught a terrible cold in the hospital, I would not have gotten the Disatonomia. The CFS was bad enough. I also wish I had taken them years ago.

 

[CBS]

AV's and a narrow therapeutic window?

sorry the moral of the storey is im feeling rundown, also have constant cold/flu thing and got the 24hr gastro bug from hell and my recent blood test shows my immune ststem is working overtime. So after all this im looking into going back to work part time so i can enjoy some of life, but with less money, probably look for some casual type of work for when i feel well etc. When i have these crashes my sleep is crap(it could be alot more desciptive if we could use swear words,mmm). The 3462 different type of sleepills dont work, its like watching pay tv with 300 channels and theres nothing on. Its all about ups and downs, just crawling along to get to the bottom of the up, rest awhile, then start heading up.

cheers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Heapsreal,

Thanks for sharing your experience. I am also on antivirals (acyclovir in my case) and I was wondering if you had discussed the possibility of side effects to the AV's being responsible for your worsening symptoms. Even though acyclovir is amongst the mildest of antivirals I may have reached a point shortly after seeing some significant improvement where my fatigue increased and lots of cold-like symptoms started. We reduced my dose to a level below what it was when I last was experiencing nothing but improvement. I understand that it may take four weeks to see if the side effects abate and are really side effects and not just more symptoms of CFS.

Thought I'd throw out the possibility of a very narrow therapeutic window for AV's in CFS patients as your recent "downs" sound similar to mine.

Best of luck.