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getting worse from imunovir?

Messages
25
Good idea. keep going down the valtrex line for awhile longer, maybe at 12 month mark trial cyclo again but start low like 1 tab. With a short time on valtrex you would still have a high viral load to still knock down. Its good that valtrex is working for you. Are u positive to just ebv or have other herpes viruses?

cheers!!!

I have EBV. My CFS was triggered by Glandular fever. I have had very good results with Valtrex previously, I had over 2 years very good health following treatment with valtrex, but relapsed again in august of this year. My health had been improving this time around, with some noticably better days, so just hoping i can get back on track again.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I had a similar experience with famvir where i was almost recovered after 12 months and then stopped av's and went backwards within a few months. I have improved again with famvir and its now past the 12 month mark, my viral markers though this time are all within normal range, hard to know when to stop. A few studies have people of av's for several years before these viruses are in a permanent suppressed state. I have a few other abnormal tests that i want to improve before i think of stopping av's this time.

good luck,
cheers!!!
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
Hi all
I am in my second week of immunovir (2 tablets a day this week). Some good news, some bad news.

The good news is no obvious reactions and also I have a small but very welcome increase in my energy and reduction in general malaise. That could be coincidence, or it could be the immunovir.

The bad news is that 5 days into taking it I got labyrinthitis again (vertigo, nausea, vomiting). The doctor thinks this is viral and a recurrence from 4 weeks ago (which the doctor also says is common). Again, maybe coincidence, maybe not.

Interested to hear how anyone else is going with either drug.

OTH
 
Messages
25
I had a similar experience with famvir where i was almost recovered after 12 months and then stopped av's and went backwards within a few months. I have improved again with famvir and its now past the 12 month mark, my viral markers though this time are all within normal range, hard to know when to stop. A few studies have people of av's for several years before these viruses are in a permanent suppressed state. I have a few other abnormal tests that i want to improve before i think of stopping av's this time.

good luck,
cheers!!!

Its great to hear that you've found success with Famvir. I've found previously that i haven't needed to stay on a/v's for an extended period though i have used a maintenance dose in the past or taken them when i feel symptoms coming on. Hadn't taken them for about a year at the point i relapsed in august so i guess that they are probably for the long term! I do wonder how long its safe to be taking them for?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Its great to hear that you've found success with Famvir. I've found previously that i haven't needed to stay on a/v's for an extended period though i have used a maintenance dose in the past or taken them when i feel symptoms coming on. Hadn't taken them for about a year at the point i relapsed in august so i guess that they are probably for the long term! I do wonder how long its safe to be taking them for?

I think av's like famvir and valtrex are quite safe long term as dr lerner has patients on these drugs for several years and use quite high doses. All up i have been on av's for 2 years and my liver and kidney function tests comeback good so far.

cheers!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Hi all
I am in my second week of immunovir (2 tablets a day this week). Some good news, some bad news.

The good news is no obvious reactions and also I have a small but very welcome increase in my energy and reduction in general malaise. That could be coincidence, or it could be the immunovir.

The bad news is that 5 days into taking it I got labyrinthitis again (vertigo, nausea, vomiting). The doctor thinks this is viral and a recurrence from 4 weeks ago (which the doctor also says is common). Again, maybe coincidence, maybe not.

Interested to hear how anyone else is going with either drug.

OTH

Thats interesting overthekills, alot of symptoms we get from infections are actually caused by our own immune system producing certain cytokines etc to fight these infections. I think sometimes with chronic infections our immune system tires and cant mount a defence like it once did and then the virus gets the upper hand and we become fatigued and achy etc But when we introduce something that perks up our immune system and it begins to fight these viruses again it produce cytokines once again and we can feel crappy until we overcome this infection. This is referred to a cytokine storm.

I sometimes wonder if our relapses and crashes are just our immune systems starting up again. I know when interferon is used for viral infections, the side effects a flu like symptoms, so interferon inducers like immunovor and cycloferon can do this. My readings on cycloferon have shown that normally it only stimulates the anti-inflammatory cytokines where interferon given itself has both inflammatory and anti-inflammatory effects. but judging by a few peoples response to cycloferon, its not as selective of inflammatory or antiinflammatory as they say. I had a good response from cyclo which i think was because i had been on av's for awhile before using it.

We dont really know until we try something.

cheers!!!
 

mellster

Marco
Messages
805
Location
San Francisco
There could be some truth to it - I seem to have gotten over the exhaustion issues but I still struggle with what I call "cytokine-relapses", i.e. flu-like and other inflammatory pain. Viruses have a tendency to resurface and then taper off symptom-wise in a diminishing sinus wave pattern but after months with no glaring infections I think a lot of these reactions could be blamed on cytokines. I wanted to start up a separate thread about what helps best against inflammatory responses but wasn't sure how many people would chime in as for the majority of patients relentless exhaustion seems to be the major issue. cheers
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Mell, its a tough call, if we used an effective anti-inflammatory for these cytokines it would help our symptoms but also these cytokines are also what help us fight these infections. Probably a good thing to use when symptoms become unbareable. But then im also trying to lower cytokine IL6 with dhea to help improve sleep. I think theres good merit invovled in controlling this inflammation for symptom relief.

cheers!!
 

mellster

Marco
Messages
805
Location
San Francisco
Heaps, in a past serology test I had slightly elevated dheas (which can be converted back and forth to and from dhea), so I am not sure whether I should try dhea although I would really like it. Will ask the doc soon. It would help if docs and labs would finally have tests ready to measure the kind of cytokines at play in every patient although it's my understanding that their presence can wax an wane quickly.
 

gu3vara

Senior Member
Messages
339
Out of curiosity, am I the only one who can't increase his DHEA-S number despite taking large doses of DHEA? I tried taking up to 100 mg a day, no change whatsoever in my results. DHEA has an extremely short half-life and the liver sulfate it to store it btw.

My guess is that a methylation block had something to do with this, don't know if it makes sense. Could have mean that it was converted rapidly to metabolites in my case.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Out of curiosity, am I the only one who can't increase his DHEA-S number despite taking large doses of DHEA? I tried taking up to 100 mg a day, no change whatsoever in my results. DHEA has an extremely short half-life and the liver sulfate it to store it btw.

My guess is that a methylation block had something to do with this, don't know if it makes sense. Could have mean that it was converted rapidly to metabolites in my case.
Have u tried a slow release formula or maybe transdermal cream for slower absorption. Another dosing strategy is multiple lower doses throughout the day. just a thought.

cheers!!!
 

kaffiend

Senior Member
Messages
167
Location
California
There could be some truth to it - I seem to have gotten over the exhaustion issues but I still struggle with what I call "cytokine-relapses", i.e. flu-like and other inflammatory pain. Viruses have a tendency to resurface and then taper off symptom-wise in a diminishing sinus wave pattern but after months with no glaring infections I think a lot of these reactions could be blamed on cytokines. I wanted to start up a separate thread about what helps best against inflammatory responses but wasn't sure how many people would chime in as for the majority of patients relentless exhaustion seems to be the major issue. cheers

I'm probably at this point as well. For about 48 hours after any physical activity or a full day of work, my processing speed is slow, I have word finding difficulties and what I call "action-finding" difficulties. By that I mean, when I go to do something like use the phone or even pick up a pen, I pause and struggle to "know" what I'm trying to do.

After reading some papers on the normal inflammatory response to exercise and some studies looking into how l-theanine and NAC might prevent neutrophil dysfunction and overtraining syndromes, I'm supplementing with those (100mg theanine 2/day and 600mg NAC 1/day). I'm also trying curcumin. It's been about 1.5 weeks and I've definitely been more functional after the last two easy trips to the gym. I'm still slow/off after going to the gym yesterday but at least I could drive and function today, so I'd say there's some improvement.

Another thread on the inflammatory response to exercise might be interesting. I'm starting to think that exertion causes swings between being immune compromised for a brief time, followed by an over-response.
 

gu3vara

Senior Member
Messages
339
Have u tried a slow release formula or maybe transdermal cream for slower absorption. Another dosing strategy is multiple lower doses throughout the day. just a thought.

cheers!!!

Tried all that yes, no changes!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Tried all that yes, no changes!

Interesting, do you know if dhea converts rapidly into either testosterone or estrogen, did tests show these increased with dhea? I think sometimes hormone pathways dont go by the book. pregnenolone is suppose to convert into progesterone and then into cortisol in one stream and on the other convert to dhea and then testosterone or estrogen. Pregnenolone increased my cortisol and testosterone levels with minimal effects on dhea and no effect on progesterone, maybe with me pregnenolone was being pushed straight into cortisol?? Maybe something similar is happening to you, not sure if dhea converts to cortisol, which is normally what happens when chronically sick and stressed.

cheers!!!
 
Hi:

Just wanted to chime in with my experience taking Immunovir. Right now after 4 months I'm doing really really well on it and am feeling better than I have in years. However I would say my first ten weeks were pretty awful and my symptoms definitely got much worse. In addition to increased fatigue and feeling more weak and unwell, I got throbbing headaches -- the kind you get when you have a bad dose of flu. And I had more swollen lymph nodes. I spent my first three weeks on it sleeping most of the day and getting up to eat, shower, etc and then going back to bed again. At one point I got very discouraged because prior to starting on Immunovir I had seen some dramatic improvements from taking increasing doses of T3. And Immunovir seemed to have taken all that away from me. About week 7 I was almost ready to give it up but my doctor insisted I continue with it and I'm really glad I did.

My suggestion to anyone thinking of starting on it is to plan for a couple of months of bad days and, if you can, line up some extra help and some emotional support because you're going to need it. Also in the first couple of months I took one in three weeks off to give my body a rest. But in my experience, if you can get through it, it's really worthwhile sticking with Immunovir.
 
Messages
25
Hi:

Just wanted to chime in with my experience taking Immunovir. Right now after 4 months I'm doing really really well on it and am feeling better than I have in years. However I would say my first ten weeks were pretty awful and my symptoms definitely got much worse. In addition to increased fatigue and feeling more weak and unwell, I got throbbing headaches -- the kind you get when you have a bad dose of flu. And I had more swollen lymph nodes. I spent my first three weeks on it sleeping most of the day and getting up to eat, shower, etc and then going back to bed again. At one point I got very discouraged because prior to starting on Immunovir I had seen some dramatic improvements from taking increasing doses of T3. And Immunovir seemed to have taken all that away from me. About week 7 I was almost ready to give it up but my doctor insisted I continue with it and I'm really glad I did.

My suggestion to anyone thinking of starting on it is to plan for a couple of months of bad days and, if you can, line up some extra help and some emotional support because you're going to need it. Also in the first couple of months I took one in three weeks off to give my body a rest. But in my experience, if you can get through it, it's really worthwhile sticking with Immunovir.

Thats great news that you have done so well on Imunovir. Out of interest when you started taking it, how long did it take before you noticed your symptoms getting worse?
 

gu3vara

Senior Member
Messages
339
Interesting, do you know if dhea converts rapidly into either testosterone or estrogen, did tests show these increased with dhea? I think sometimes hormone pathways dont go by the book. pregnenolone is suppose to convert into progesterone and then into cortisol in one stream and on the other convert to dhea and then testosterone or estrogen. Pregnenolone increased my cortisol and testosterone levels with minimal effects on dhea and no effect on progesterone, maybe with me pregnenolone was being pushed straight into cortisol?? Maybe something similar is happening to you, not sure if dhea converts to cortisol, which is normally what happens when chronically sick and stressed.

cheers!!!

I can't say for sure because I was taking testosterone as well, but me estrogen level were close to zero (I am a male but still we need to keep decent levels of those) before testosterone and dhea were started, at the same time.

I think that it's testosterone that rose my estrogen, but I didn't retest after stopping dhea tbh, so maybe it had an impact on those.

Anyway, I stopped all those hormones because of the lack of benefits, I don't want to hurt my chances to have kids some day.
 

niall

Senior Member
Messages
100
Location
Florida
I have been on Imunovir four times since 2006, each time for six months duration. The first time I took it, I had a decent response to it in that I got back much of my energy but still had the reddened irritated throat. My immune system crashed after eight months of stopping it when I returned from vacation. Each time I took it thereafter, I had a poorer response from it; only getting some more energy but no relief from symptoms, otherwise. Since I have CFS and fibromyalgia, I think that the Imunovir significantly increased my body pain, especially when I was on the week which required taking 500mg (two tabs) three times a day. I now think that my diminishing response could be due to the fact that my body is becoming resistant to the immune modulating mechanism of the medication. So the next time I take it, I plan a course of therapy with three months on the medicine and one month off, then another three months on and one month off. I will also reduce the second week of three grams a day Monday through Friday to three grams on Monday, Wed. and Fri. and 1.5 grams on Tues. and Thurs. to help reduce the overall body pain. In fact, I did the reduction of dose the last time I took it and was not in quite as much pain as before.
 

mellster

Marco
Messages
805
Location
San Francisco
I think Immunovir is a good option but in case of "resistance" effects you can always modulate with different substances and "cycle", there is so many more immune-modulators such as LDN, Cycloferon, Graviola, Andrographis, Thymus Protein and many more.. cheers