• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

nk function increased 5 months after immunovir use stopped

jeffrez

Senior Member
Messages
1,112
Location
NY
Hi:It seems like there are many variations in how doctors prescribe this drug for CFS. I take six pills a day on odd weeks and 3 pills a day on even ones. But I have a month off every two months.

That sounds like the Cheney protocol. I think the dosage size he was working with was 500mg/pill. Is that what you take?

I have some inosine I tried taking a few years ago, but I was afraid of the possibility of gout. One of my uncles has gout sometimes, and it does not look like a fun thing to have. I read somewhere when I was researching inosine that there was something you could take that would significantly reduce the risk, but I've long since forgotten what it was. Does that strike a bell with anyone?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I have seen 2 alternating protocols, one being the common one seen ie 6 tabs mon-fri alternated with 2 tabs mon-fri.
The other was 6 tabs mon/wed/fri and 2 tabs tues/thurs with week ends off as in the above, then the dosing is swapped with 2 tabs mon/wed/fri and 6 tabs tues/thurs. Who knows which is best protocol??

cheers!!!
 

currer

Senior Member
Messages
1,409
The dose my consultant uses is one 0.5g tablet three times a day for two months.

He gave up the higher dose course because some patients developed ME like side effects, and he had noticed that lower dose courses seem to be as effective.

I notice that all the courses are temporary, in other words one does not stay continually on this drug.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Yes i have seen other docs use a constant dose and wonder if there really is a difference. Someone on here awhile ago mentioned that they felt good using 6 tabs a day and worse on 2 tabs a day so they just stuck with 6 tabs a day until it stopped working then they would take a break for several months. Im sort of concerned that the protocols where they take every third month off, does their nk function drop off or over time does the nk function actually improve for a more prolonged time. Maybe as the viral load decreases, sustained improvement can be maintained?? Theres alot of questions and not alot of answers??

cheers!!!
 

currer

Senior Member
Messages
1,409
I seem to remember my consultant saying that the improvement continues past the point at which the drug is stopped.
The immunovir stimulates the immune system and this continues even without the drug.

So he felt that there should be a break.

Originally he used to give three grammes a day, (six tablets) for a month and then a break of four to six months, but it is evident that many permutations of this protocol are possible.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I suppose the article i posted in this thread does say increased nk function 5 months after stopping immunovir, so maybe one could smash up 6 tabs a day for a month and take a month or 2 off??
A thousand combo's i guess.

cheers!!!
 

Hugocfs

Senior Member
Messages
121
Location
U.S.A.
That sounds like the Cheney protocol. I think the dosage size he was working with was 500mg/pill. Is that what you take?

I have some inosine I tried taking a few years ago, but I was afraid of the possibility of gout. One of my uncles has gout sometimes, and it does not look like a fun thing to have. I read somewhere when I was researching inosine that there was something you could take that would significantly reduce the risk, but I've long since forgotten what it was. Does that strike a bell with anyone?
high carb, low protein washed down with plenty of water
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I have been on immunovir 3 days now and it does feel very different to inosine. The first day all my cfs symptoms increased as well as sneezing coughing etc but yesterday had a headache, today i havent had a morning dose and feel ok, will just take a night time dose for now as i dont feel an increase in symptoms. post nasal drip from sinuses seems to have stopped, maybe my nk cells are sorting my sinuses out??

cheers!!
 

Seven7

Seven
Messages
3,444
Location
USA
Yes function is up to the low normal end, But I was too acidic and it was peeling me when I had a bowel. So my new regimen (and before I got to the normal range is)

week1 and 3 = 3 pills a day (500mg each)
Week 2 and 4 = 4 pills a day
weekends Off, One month Off every 6 months.

But if you can handle the full protocol better to do so. I am almost with no symptoms now.
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
Yes function is up to the low normal end, But I was too acidic and it was peeling me when I had a bowel. So my new regimen (and before I got to the normal range is)

week1 and 3 = 3 pills a day (500mg each)
Week 2 and 4 = 4 pills a day
weekends Off, One month Off every 6 months.

But if you can handle the full protocol better to do so. I am almost with no symptoms now.

Thanks. And when you say "full protocol" I gather you just mean the immunovir, or are you taking other things that have contributed to your overall recovery that you would recommend as part of that full program?
 

Seven7

Seven
Messages
3,444
Location
USA
I meant handle the 6 pills a day, the biggest bank for my money was treating Oi, I am doing Florinef and midodrine
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
I meant handle the 6 pills a day, the biggest bank for my money was treating Oi, I am doing Florinef and midodrine
Got it, thanks for clarifying and for that additional information.

I've found the assertions on the Dr. Lerner site about left ventricle dysfunction to be interesting wrt the OI most of us seem to be dealing with. Dr. Kogelnik asserted to me that the issue was viruses in the nerve cells that are supposed to sense and handle blood volume as well as blood vessel dilation. Either way it appears this could be reversible if the viruses are eradicated.