Viruses use 'fake' proteins to hide in our cells.

[heapsreal]

@NK17 Thank you for reminding me that we are all in this together and I am not alone. I am not doubting my decision in any way and need to stop thinking of all the "what if" scenarios.

Dr. K told me that with anti-virals (assuming I turn out to have the viruses he suspects) that 1/3 make full improvement, 1/3 improve but once they stop a/v they go back to square one, and 1/3 do not improve.

Do you agree with those statistics?

Maybe and I mean maybe if he closely hand picked the appropriate patients with their labs.

 

[Gingergrrl]

Maybe and I mean maybe if he closely hand picked the appropriate patients with their labs.

@heapsreal I want to clarify that I don't think he was talking about a research study like Dr. Lerner's where people were hand picked to fit certain criteria.

I think he meant in his experience if any given patient had specific viruses and then were given the right a/v for those viruses, that those were his opinion of their potential odds.

I specifically asked him that question and really had no idea what his answer would be (and now not sure if it was based on his own practice vs Lerner's studies or both?)

My husband thought he was trying to say that 1/3 of people get better on their own but he misheard and Dr K was clearly saying 1/3 of people on a/v's (not without them.)

 

[heapsreal]

@heapsreal I want to clarify that I don't think he was talking about a research study like Dr. Lerner's where people were hand picked to fit certain criteria.

I think he meant in his experience if any given patient had specific viruses and then were given the right a/v for those viruses, that those were his opinion of their potential odds.

I specifically asked him that question and really had no idea what his answer would be (and now not sure if it was based on his own practice vs Lerner's studies or both?)

My husband thought he was trying to say that 1/3 of people get better on their own but he misheard and Dr K was clearly saying 1/3 of people on a/v's (not without them.)

All i can say is its worth a crack, especially famvir as its quite safe too.

All cfs treatments should say "you/we dont know unless you have a go"

 

[Gingergrrl]

All i can say is its worth a crack, especially famvir as its quite safe too.

All cfs treatments should say "you/we dont know unless you have a go"

@heapsreal Thank you and that is my attitude right now. I will never know unless I try it and if I have a chance at getting better, I am going to grab it and take it. I never use the word "cure" but right now I am somewhere between a 3-4 level of functioning and if I could get back to around a 6, I would be ecstatic. I really am hoping that famvir is what Dr. K recommends for me and I would like to start with a low dose and build up. I also see my ND next Tues and am going to increase the natural anti-virals as well.

I e-mailed Dr. K last night to inquire about inosine and other immune modulators. I looked back through my notes from my appt and he said he does not use immune mods, but I was writing so fast at the appt that I did not catch the reason why he does not use them. Right now there is a small amount of inosine in the Monolaurin that I take (but really small like 7.5 mg) and I am wondering if taking a larger dose with the famvir (assuming that is what he prescribes) could be helpful?

@heapsreal, I wanted to ask if you are familiar with a few other supplements? Dr. K mentioned "AHCC" which is an anti-viral from mushrooms. My ND has me taking Maitake Mushrooms but if the AHCC is more powerful than I want to switch. It is a question I have for both doctors.

Also, are you familiar with "Transfer Factor?" I think the brand is Plasmyc or something like that. My ND mentioned it once (but at the time she felt I was too ill to handle it) so we never tried it. Is it also an immune modulator?

Thanks in advance for any info!

 

[heapsreal]

@heapsreal Thank you and that is my attitude right now. I will never know unless I try it and if I have a chance at getting better, I am going to grab it and take it. I never use the word "cure" but right now I am somewhere between a 3-4 level of functioning and if I could get back to around a 6, I would be ecstatic. I really am hoping that famvir is what Dr. K recommends for me and I would like to start with a low dose and build up. I also see my ND next Tues and am going to increase the natural anti-virals as well.

I e-mailed Dr. K last night to inquire about inosine and other immune modulators. I looked back through my notes from my appt and he said he does not use immune mods, but I was writing so fast at the appt that I did not catch the reason why he does not use them. Right now there is a small amount of inosine in the Monolaurin that I take (but really small like 7.5 mg) and I am wondering if taking a larger dose with the famvir (assuming that is what he prescribes) could be helpful?

@heapsreal, I wanted to ask if you are familiar with a few other supplements? Dr. K mentioned "AHCC" which is an anti-viral from mushrooms. My ND has me taking Maitake Mushrooms but if the AHCC is more powerful than I want to switch. It is a question I have for both doctors.

Also, are you familiar with "Transfer Factor?" I think the brand is Plasmyc or something like that. My ND mentioned it once (but at the time she felt I was too ill to handle it) so we never tried it. Is it also an immune modulator?

Thanks in advance for any info!

Can just ask Dr K that u want to try famvir first and ask him of his opinion of it and say consider valcyte after a good trial of famvir?

I tried the ahcc, but couldnt take it for too long due to cost, cant say i noticed alot other than the first day i took it broke out in a massive sweat like a fever, but nothing after that? Tansfer factors i have tried 1 type, again didnt notice alot but with these things we just dont know unless we are also getting tested and nk function is tested while taking these things and we may need to take them longer term with antivirals?

Maybe dr k is apprehensive of immune mods if he thinks theres an auto immune component???

I have used immunovir and seen nk number rise, inosine the very first time i used it, it seemed to help but i have used it several times since with no real effect. Cycloferon does seem to help and it did raise my nk function test when i was able to get it tested. Im also using arbidol/arbivir which is commonly used in flu's etc and helps raise interferon and this increases nk function. I havent had any testing while on these products but they helped clear up my sinus issues?

Ideally if dr k would work with you, try the things he mentions and compare to before and after nk function tests. I would think immunovir dr k would know about as its commonly prescribed by other american cfs doctors. I think to get it, people normal buy it from canada or europe, can work out costly but then ahcc is more expensive again?

Russians seem to have developed alot of immune mods, alot of their research was started back in the 1960s. I think western countries didnt look into this research as they were more interested in vaccines for viral infections. Try googling russian immune mods or interferon inducers, u will find alot of my threads but also other info out there.

 

[Gingergrrl]

Can just ask Dr K that u want to try famvir first and ask him of his opinion of it and say consider valcyte after a good trial of famvir?

I tried the ahcc, but couldnt take it for too long due to cost, cant say i noticed alot other than the first day i took it broke out in a massive sweat like a fever, but nothing after that? Tansfer factors i have tried 1 type, again didnt notice alot but with these things we just dont know unless we are also getting tested and nk function is tested while taking these things and we may need to take them longer term with antivirals?

Maybe dr k is apprehensive of immune mods if he thinks theres an auto immune component???

I have used immunovir and seen nk number rise, inosine the very first time i used it, it seemed to help but i have used it several times since with no real effect. Cycloferon does seem to help and it did raise my nk function test when i was able to get it tested. Im also using arbidol/arbivir which is commonly used in flu's etc and helps raise interferon and this increases nk function. I havent had any testing while on these products but they helped clear up my sinus issues?

Ideally if dr k would work with you, try the things he mentions and compare to before and after nk function tests. I would think immunovir dr k would know about as its commonly prescribed by other american cfs doctors. I think to get it, people normal buy it from canada or europe, can work out costly but then ahcc is more expensive again?

Russians seem to have developed alot of immune mods, alot of their research was started back in the 1960s. I think western countries didnt look into this research as they were more interested in vaccines for viral infections. Try googling russian immune mods or interferon inducers, u will find alot of my threads but also other info out there.

@heapsreal, As always, I cannot thank you enough for all the info that you provide. I am going to do exactly as you said and ask Dr. K to start me with famvir (unless there is a really good reason not to?)

Re: AHCC, I didn't realize it was so expensive but at this point if Dr. K and my ND think it could help me, I will add more money to the supplement pile! I will be having my NK functioning monitored so that part should not be a problem.

As far as immune mods, I really need to clarify this with him. I do have Hashimoto's (immune thyroid condition) but I did not get the sense that he was against immune mods for me specifically, vs. that they just do not use them across the board. I am sure he is very knowledgeable about them so I am wondering if he feels they are just not effective? If that is the only reason, then I would like to try Inosine (as long as he doesn't think it will harm me.)

I am not familiar with Cycloferon or Arbidol/Arbivir and will be googling these shortly!

Thanks again!

 

[Gingergrrl]

@heapsreal, I wanted to tell you that I bought the AHCC today and it was not expensive so maybe this is one of those products that is harder to get in Australia?

The one I bought also has NAC and beta glucan in it besides the AHCC mushrooms. I am going to try it later today instead of the Maitake mushroom from my ND and will let you know how it goes. You have to take on an empty stomach a few hours from food.

 

[heapsreal]

@heapsreal, I wanted to tell you that I bought the AHCC today and it was not expensive so maybe this is one of those products that is harder to get in Australia?

The one I bought also has NAC and beta glucan in it besides the AHCC mushrooms. I am going to try it later today instead of the Maitake mushroom from my ND and will let you know how it goes. You have to take on an empty stomach a few hours from food.

Post a link.

The ahcc I used was $50 for 60 tabs and needed 6 a day or 3000mg. kinoko gold brand. I used 6 tabs a day for 10 days then 2 a day after that. When on 6 a day I think I felt a difference.

 

[Gingergrrl]

@heapsreal I'm embarrassed to say that I am not sure how to post a link on PR but I will tell you all the info about the AHCC that I bought from Vitamin Shoppe. We bought it in person at the store so that also avoids shipping costs. Usually though we order everything from Amazon.

The brand is "Solaray" and it was $32 for 30 capsules which I guess did not seem expensive to me compared to some of the other supplements that I've bought like the liquid Glutathione which costs a small fortune! The bottle says to take two per day (1000 mg total) but I started with just one as I often react badly to new things and start as low as possible.

I can seeing how taking six per day would be extremely expensive. Did your doctor/ND advise taking six a day or did you just try that dosage on your own? The one I bought also has NAC and Beta Glucan in it.