Antiretroviral Trial

[Daffodil]

i read that the trial included all dsDNA viruses? that includes ebv and hhv6 right?

the media reported that there are trial sites in the US, Israel, Canada, and Europe..but Chimerix tells me only US. How likely is that?

 

[mojoey]

That's what the trial said but they specifically said "no ebv and hhv6" today over the phone today.

Sorry I have no idea about trial sites outside of the US

 

[Daffodil]

it looks like some years' wait for cmx001, then.

 

[acer2000]

I suspect patients with dreaded haplotypes would definitely not do well on something like GcMaf (which Peterson has described as causing autoimmunity) unless they were able to significantly decrease inflammation first and during.

So I heard him say this about GcMAF as well, but in my research on it I have never seen anything about autoimmunity as a reaction to gcmaf. Do you know what research he is quoting? I'm interested in learning more about it.

 

[5150]

Friday i was talking with people on mecfs forums(so called 'other site'), and they were saying 3 people on there have reported near-suicidal depression when taking gcmaf. i personally haven't knowledge of this, but no reason not to take this seriously imo.

also, i've been having extreme burning inflamed feeling in stomach & what feels to me like lymph glands on left side of low neck; friend gave me some doxycycline that seems to be helping/ my doc refused it for me. it was about an hour or so until i could notice improving. will try another day at a time. my gut is a wreck anyway; can't seem to get it right, so why not try antibiotic just as a knock-down if the desperation factor is in play?

 

[heapsreal]

hi Daff,
Im going to second what undcrv said and maybe try famvir as others have had success with it against hhv6 and cmv and its alot less toxic then valcyte. The dose i used was 250mg twice a day which helped. Also as for interferons which was also mentioned, things like immunovir and cycloferon increase our natural secretions of interferon. Interferons have antiviral properties as well as improving natural killer cell function, very similar function but not as strong as some of ampligens effects.

cheers!!!

 

[Daffodil]

5150.....are you taking probiotics along with the antibiotics? maybe that would help your gut....

so...since i am not going to get cidofovir, i am going to restart valcyte. the only dose i can handle is 2 pills a day. before, i wanted to be off all anti-herpes drugs to enable docs to find the virus in my spinal fluid....but now i guess that doesnt matter.

i think the reason ampligen gets rid of brain fog first is because it hits other viruses along with xmrv.....but all i am doing it targeting the xmrv with the raltegravir and tenofovir.

i think 6 months of paying for cidovofir, administerting the drug, other testing, living expenses, etc...would probably run about 60K or more....my mom might lose her condo. i couldnt do that to her....especially with no guarantee that it would work or that i wouldnt just relapse.

one person i know who is well, but still cannot work (i think) got the drug for an entire year!

 

[undcvr]

I am going to suggest you combo it with something to prevent the virus becoming resistant to it if it already hasn't. 2 pills of Valcyte a day did nothing much for me. With your titers I can almost guarantee rite now that 2 pills a day won't work.

I suggest, Isentress, Arteminisin, LDN, Valtrex and/or Famvir. Valtrex and Famir you can take at relatively high doses and their side effects won't show up. I don't know of anyone that has taken both of them at the same time yet but I have always thought that a synergistic effect is theoretically possible.

Take active folate (Vitamin B9) either in the formyl or methyl form 7.5mg twice a day. This active form will rescue the DNA synthesis pathway that Valcyte is notorious for shutting dwn aka your white and red blood cells. If you can get past this hurdle of side effects you should be ok. But in general try to keep all your B vitamins high and in their active form if possible.

And then on top of it all: Protect Your Liver !! NAC, NAC, NAC, NAC, 2-4gm a day. And a little Selenium to make sure the Gluthatione peroxidase enzyme runs.

Most of what I am telling you is from personal experience and as for as I am concerned XMRV is not involved in CFS.

 

[mojoey]

I just heard from a KDM patient who experienced signifcantly elevated c4a on gcmaf. KDM is now telling her that gcmaf actually reactivated hhv-6 and is that she should go on valcyte. Dr cheney has voiced similar concerns about gcmaf reactivating herpes viruses and has advised some patients to take famvir with gcmaf.

It sure doesnt sound like gcmaf is a one-stop-shop for cfs patients. Is it possible that the chronic inflammation is deterring the gcmaf from working? I'm starting to agree with general tone in this thread that boosting the immune system so it could get rid of viruses on its own simply doesnt work for cfs unless you take another drug which specifically calms down the overactive immunity.

 

[undcvr]

WTH wud I want to take something that reactivates HHV6 ??? I don geddit.

 

[mojoey]

Hey Acer2000,

I don't know what research he is quoting. He specifically said he thinks he could cause lupus. I'm thinking he's referring to IRIS, which is known to lead to autoimmune diseases in some cases.

IRIS consists of newly-unmasked inflammatory reactions to old infections. Can IRIS lead to reactivation of pathogens though?

 

[Daffodil]

und...thank you

well i can tell you 100% that a retrovirus is involved in CFS because the HIV meds have made a HUGE difference in my energy level. also, these herpes viruses shouldnt even be active in us! something is weakening us.

so i restarted valcyte last night and i had forgotten about the intense nausea that i had the last time i took this stuff (2 months ago?). i have that horrible feeling again in the stomach area. its scary cuz its a different nausea that usually accompanies new meds and it doesnt go away. and i used to have high liver enzymes on this stuff too....so i looked up the liver and its around the same area as the stomach - where this bad feeling is. so now i am worried and want to stop the valcyte again.

now...ive been on isentress for a year and a half and my brain is still all messed up. so it isnt helping HHV6, if thats what i have. instead of famvir, artemenisin, etc etc...what do you think of nexavir? i took it for a few months waaaaay back....in 2007 i think.....but at that time, i wasnt on the HIV meds, so maybe now it might help?

since ive taken 2 doses of valcyte, my fog does seem worse, like the last time...which i know is a good sign...but i dont know why my body is reacting differently this time around.

if only cmx001 was further along...my problems would be solved right now!

 

[froufox]

Hi Joey

Thanks a lot for posting this info. I'll take your post over to the GcMAF thread and reply to it there if thats ok?

I just heard from a KDM patient who experienced signifcantly elevated c4a on gcmaf. KDM is now telling her that gcmaf actually reactivated hhv-6 and is that she should go on valcyte. Dr cheney has voiced similar concerns about gcmaf reactivating herpes viruses and has advised some patients to take famvir with gcmaf.

It sure doesnt sound like gcmaf is a one-stop-shop for cfs patients. Is it possible that the chronic inflammation is deterring the gcmaf from working? I'm starting to agree with general tone in this thread that boosting the immune system so it could get rid of viruses on its own simply doesnt work for cfs unless you take another drug which specifically calms down the overactive immunity.

 

[Daffodil]

und...does your doc say its dangerous to take all that valcyte for you? are your liver enzymes totally normal?

i just would hate to feel better and then die later on cuz of all the drugs i took... :-/

i cant decide whether i should put my mom at risk for losing our condo and get cidofovir, or just continue to take valcye despite this horrible nausea. i'm not optimistic about it helping much either, but the hope of it helping might tide me over for a while.....i cant just sit here with this brain infection and do nothing.

sorry i sound like a broken record....

 

[undcvr]

Well since the research out there is so thin either on long-term high-dosage use of Valcyte he really didn't know what to say besides the fact that Valcyte is known for all those side effects.

Having said that, for over all these months on the high dose of Valcyte my liver enzymes have come in normal. Is it because of all the other supplements that I take for liver and side effect support ? I can't say. I do know that I seem to be quite rare in that I am able to tolerate such a high dose for such a long time. That and the fact that I am taking other AVs and ARVs as well.

That is why I suggest Famvir also.

 

[Daffodil]

hi und. i have never taken famvir before, only valtrex..so maybe thats a thought.

i know they give valcyte to kids with transplants..so how bad can it be? i have been scouring the net for cancers after ganciclovir but there isnt that much really.

i looked at some old papers and found that cidofovir is like $2500 a dose so i'm done with that idea!

 

[5150]

is it known exactly what andrea has done? isn't it ampligen, but with what else? i recall once someone said(paraphrase), that people have a duty to share information about what has helped them ... but i haven't heard details about her, just that she's doing better. meanwhile, people are desperately trying to figure out a "formula", like is going on here.

i don't mean to distract from the work that is progressing here on your thread, Daffodil.

 

[Daffodil]

hi 5150....i think andrea is on HIV meds cuz there was an interview with her a while ago and she said she is on meds to target that virus. i dont think she is on ampligen right now...but i am not 100% sure.


sue

 

[Daffodil]

i found out that cidofovir is much cheaper in india but i was unable to find out how much it is. it also wouldnt cost too much to have it administered there...i wonder if going there might be an option for me. ...but how to find a doctor in india willing to give it to me?

 

[5150]

i found out that cidofovir is much cheaper in india but i was unable to find out how much it is. it also wouldnt cost too much to have it administered there...i wonder if going there might be an option for me. ...but how to find a doctor in india willing to give it to me?

i read the wikipedia on it; says the administration is once every two weeks by injection, but it didn't say for how long. that would be a factor in deciding about india; how long you need to stay there to get the full treatment course. more time= more money for living expenses,etc. (i don't even know what the full course is; maybe someone else knows that?)