Antiretroviral Trial

[Daffodil]

hi all. charles..may i ask why you are on truvada?

sorry i have not been on much....no luck with the AZT yet and, from the neck up, things have been pretty horrendous. inflammation from hell.

have no idea if the AZT will kick in. just have no options left.

und...thanks for telling me about the RAL and the herpes viruses. i keep meaning to get various tests but...you know how it is when all you can do is crawl into bed.

i would like to get some bloodwork at VIP at this point in the "treatment"...but another few thousand bucks seems so outragious. i was going to apply to my provincial health plan to pay this time, but the form said they wont pay for anything experimental so i am thinking maybe i won't waste my time and very little mental energy on filling out forms...

wonder if the alberta researcher will find xmrv..sure would be nice to have another positive study.

love
sue
xoxo

 

[Charles555nc]

Basically the doctor I saw said Azt was entirely too toxic and was unwilling to prescribe but she believed in the 3 drugs policy towards retroviruses, we picked truvada (2 in 1 combo) and Isentress.

Daffodil,
Have you thought about uping your Isentress dosage, some meds like Doxycyline, penetrate the cns when used in higher dosages.

Edit: I think you and me should keep apprised of the GcMAF thread, which seems to be very interesting as far as actual treatment goes:
http://forums.phoenixrising.me/show...ge-activating-factor-anyone-taking-it/page106

 

[Daffodil]

hi charles. thanks. i have been entirely too foggy to read the GcMAF thread but its always in the back of my mind. wouldnt it be wonderful if something actually worked?

i know at least 2 people are on epivir for CFS...dr. chia prescribes it for chronic coxsackie or something...so people are trying different ARV's.

since AZT worked on me once and the others dont, i always wonder if we have another retrovirus in addition to or instead of XMRV.

i also have a good feeling about IL-7...but hanging on when you are this ill is so tough. i spend 1/2 the day thinking about how nice if felt for those few days when the AZT was working lol

so weird. the dose i am on now of AZT...i am having no side effects...but before, i could barely move, was completely bedridden, had insane chest pain, and my brain was clearing up. WTF

 

[Sushi]

hi charles. thanks. i have been entirely too foggy to read the GcMAF thread but its always in the back of my mind. wouldnt it be wonderful if something actually worked?

Hi Daffodil,

I always read your posts with a lot of sympathy and interest, though I don't post on this thread as I am not taking ARVs--I am taking GcMAF. I am XMRV + and am slowly improving, as are many who are taking GcMAF.

Yes, it is very hard to keep up with the GcMAF thread as it is so active. Cause of this, I thought I'd just quote a bit from it for you and give you a link to an interesting recent post.

I also see KDM in Belgium and this is from a post of another of his patients--

Ikke: KDM told us that XMRV is a lot like HIV. This means that it is not the xmrv making us sick, but the coinfections, and the way our body's respond to them. In my case the co is Q-fever. He told us that if he where to get Q, he would have flu like symptoms for 2 weeks, and then never experience q-fever again because of lifetime imunisation. Because I'm XMRV+, it has become a chronic condition (well documented with Q antibody tests over the last 5 years). The same goes for lyme, a healthy person will never get CHRONIC lyme, hence the reports that 100% of chronic lyme patients are XMRV+....


I think the coinfections are the reason why the symptoms and complaints are so diffrent for so many people, although the underlying cause, XMRV undermining our imunsystem, is the same for so many of us....

KDM also told us that some big news about XMRV was to be released soon, but he could not tell us more because of a confidentiality agreement that he had signed.
He also told us that he had bought some blood from the bloodbank at Leuven, the centre of the opposition for XMRV, and longterm defenders of CBT an GET, and that the results looked promisisng, and he would be able to shut them up real soon. Ofcourse he refused to elaborate on that as well.

http://forums.phoenixrising.me/show...yone-taking-it&p=168413&viewfull=1#post168413

Best wishes,
Sushi

 

[Enid]

Thanks for posting Sushi and allowing some catch up with K de M for us (much understand their need for silence at the moment and much looking forward to their breaking news). Enjoyed the prospect of "shutting" the idiot CBT/GET's up. K de M is coming to the Iime conference in London in May with Drs Mikovits and Chia amongst others - should be the best ever.......aetiology too.......a genius. I've always wondered why standard UK blood tests show nothing whilst K de M does find pathogens requiring treatment - not looking hard enough ?

 

[Charles555nc]

You'll remember it was the stubborn overly competitive, perhaps corrupt UK labs that said that XMRV was contamination and not really an infection and this delayed the progress of research into XMRV until other labs in sweden for instance replicated the studies of the whittemore institute.

Currently taking antiretrovirals every other day, trying to build up to every day,

on off day taking zinc, melatonin, half a pill of selenium (cant boost my immune system but so much because of autoimmune reaction specific to selenium)

Two days a week I take tindamax for lyme co infection and edta suppository (to break into biofilm/remove heavy metals)

Would love to try a reliable/affordable brand of GcMAF sometime and/or Nexavir.

 

[Daffodil]

thanks sushi. i heard this about demeirleir, too - that something big is coming. i think its absolutely wonderful that the GcMAF is working. would you mind telling me what is improving, how long you have been sick, etc etc?
thanks a lot
sue

 

[Sushi]

thanks sushi. i heard this about demeirleir, too - that something big is coming. i think its absolutely wonderful that the GcMAF is working. would you mind telling me what is improving, how long you have been sick, etc etc?
thanks a lot
sue

Hi Sue,

I have been very disabled for 6 years and about half to a quarter sick for many years before. I have taken 10 IV shots of GcMAF so far (10 weeks) so it is early days as I am supposed to be a genetically low responder to GcMAF.

But I have a very definite response--immune activation that goes after old infections and then a few days each week where I have more stamina, get along with less sleep, don't have OI, etc.

I see KDM again on the 19th (second visit) and by then all my test results should be in and he will put me on a fuller protocol. He started me on GcMAF with the first visit because of the medical tests I brought with me and because I was XMRV +. He "guessed" that someone with my genetics might take about 35 or 40 weeks to feel a significant level of recovery.

Best wishes to you,
Sushi

 

[mojoey]

Here is a public spreadsheet of patients' responses to gcmaf. https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

Last I checked about 41% of patients are experiencing any level of positive response.

 

[girlinthesnow]

Hi mojoey, just thought I'd mention that according to KDM there is a large statistical difference appearing between people who are taking GcMAF alone and those who are on GcMAF plus an immune modulator ( nexavir).

 

[Daffodil]

thanks guys. this is very interesting. i guess one has to stop the ARV's before taking the GcMAF?

i heard that GcMAF is at least $700 per injection..is this true?

thank you
sue

 

[mojoey]

you're talking about Yamamoto's product which now is being distributed by PPS in israel.

If you see Kenny De Meirleir, he gives you another version for 35 euros a shot

If you see Cheney, he has you order another version from BGLI for around 100 euros each dose.

 

[Daffodil]

ty joey. is yamamoto's better?

 

[Charles555nc]

Im getting that head swelling thing you were talking about daffodil, is that a sign the antiretrovirals are working or a side effect, ya think?

 

[undcvr]

Hi Sue, I just wanted to make the point that if Isentress and Viread worked for you, it MAY NOT mean that there is a retrovirus in play at all. These drugs have been known to work against DNA viruses as well. I am taking them but I do not expect the cause to be XMRV.

I HAVE NOT TESTED FOR XMRV AT ALL. As a matter of fact there are other viruses and bacteria and stuff that I should have tested for but have not.

My HHV6 titers are 1:320 and EBV is now undetectable. Montoya made a good point and that is if your HHV6 titers are not high it does not mean the virus is not active inside you, you have to take another step and test for its 'viral load'. He says that by that point HHV6 has 'chromosomally integrated with our DNA' and viral titers will be low. Montoya uses focus labs.

I sent u my number in my pvt msg call me if u want to talk.

Also Dr Ian Lipkin, the Indiana Jones of Virus Hunting, Virus-Hunter has joined the fray and most cfs doctors are sending their blood work to him. If he can't find it, no one will.

Oh and one other thing: A friend of mine who is HIV+ has been reading and some HIV doctors have been telling him that they found out that Viread and Isentress protects againt prostate cancer. This does back up the claim of having found the XMRV virus in prostate cancer cells and it all seems to link up.

 

[Daffodil]

und..thank you..... trying not to get hopes up again but you have given me some anyay lol

i had read about the HIV meds protecting against prostate cancer. i remember reading some old study showing how treated HIV patients get prostate cancer less than the general population, while they get other cancers more often. they had no idea why....but we do!

 

[undcvr]

Daff make sure you are thorough about HHV6 levels in your body before moving onto other possibilities, make sure you can clearly eliminate that. Montoya really makes a big deal about it. IE if your titers are low then check the viral load after that.

I am not sure if you should raise your hopes because honestly it still is the Valcyte that raised me from the days of being a laying-down dead. If anything else, just the Valcyte at its highest allowable dose for humans (1800mg/day) and Valtrex that made the really big difference.

Then came the Tamiflu and the Amantadine and then the ARVs in a 'throw everything including the kitchen sink' possible treatment so see what works. My gut feeling was that there might be more behind the ebv/hhv6 Valcyte or maybe it is just that I have not been on it long enuf and I am impatient. I dont know. But come may 3rd i will be on Valcyte for 6 months.

 

[Charles555nc]

I was on Valcyte for 3 months but my symptoms became worse and untolerable (vs a side effect reaction) please be careful as Valcyte does carry a "black box" warning. It can kill you. But Im glad your symptoms are improving.

 

[undcvr]

I dont think Valcyte has killed anyone yet.

 

[Daffodil]

i just dont know what to do. i was on valcyte and valtrex for 3 years, and the valcyte helped me maybe 5% or less. so i just cant see it helping now....but still, maybe i can try it for a little while? i just dont know.

i had a cold sore a few months ago and took some valtrex on my own...it didnt help the CFS.

there is something going on deep in my central nervous system and brain. i dont feel so horrible from the neck down, other than nausea lately. but in my neck and head, especially towards the back, it feels very swollen. also, i have severe fog again, after 4 days of a little relief.

maybe mine spread too far to be helped....it was too late when i started treatment...thats how it feels.