Antiretroviral Trial

[Daffodil]

thanks 5150..i certainy will try to get in sooner. i hope you find some help soon, too. its so nice of you to take time to think about me when you are sick yourself!

und..i am not seeing peterson..i am in canada. i was going to go to nevada to see peterson, because someone told me that if i have proof of CNS infection, i can get vistide here...but my doc said no.

 

[undcvr]

It took me Valcyte and 3 other AVs to get the viruses under control. I know that Vistide is a very powerful drug and if anything can help you it would be it, given that you have tried everything else.

Btw how do you respond to Artemisin/Artesunate ? That is a very big clue to the cause of your CFS.

 

[mojoey]

Hey undcvr,

can you elaborate on why response to art is a big clue to the cause of cfs? I'm pretty convinced that my case is viral induced although the chronic inflammatory response to tiny triggers makes evaluations of antiviral treatment not so clear cut if I'm not in a toxin-free environment. I responded OK to both artesunate, wormwood, and arteminisin, but nothing significant. Valtrex also didn't make much of a dent.

Thanks,
Joey

 

[mojoey]

I'm trying to find out more info about the cmx001 studies in the US as well daffodil. Do you know what cost is here under the expanded access? I know of a few Peterson patients that are trying to get into a trial but nothing concrete yet

 

[acer2000]

In addition to CMX001 that same company has CMX157 which is a similar drug complex with tenofovir. It apparently is highly active against both HIV and XMRV.

http://www.prnewswire.com/news-rele...netics-safety-and-tolerability-111779284.html

There is also an anti-PS drug Bavituximab that is being trailed for cancer and HIV/HepC con infection now, but also exhibits very wide spectrum activity against other viruses including HIV/HTLV/XMRV.

http://lifetechcapital.com/ltc/wp-content/uploads/2011/05/PPHM-Update-04-01-11.pdf

 

[Charles555nc]

Hi Daff and others,

I just wanted to update everyone on how I'm doing. So Im XRMV+ and I tried antiretrovirals, but couldnt tolerate them/felt worse. I decided to try GcMAF and Im on my first month of it. The first week I took a double dose, just in case Im a poor responder, I also took vitamin D and did about 15 push ups (I was told from the company that you need to take vitamin d and excerise to activate macrophages). Immediately felt better.

As many others have complained of in europe tho, I had severe rage and anger about a week and a half in. Smashed my keyboard to bits all over the place. So I took one leftover Low dose naltrexone pill and the rage went away for the most part. 2 weeks in, I felt 50% better, I could do 25 pushups, my posture improved alot, could see the veins in my arm again, and I could feel my hormones rushing back. 3rd week I started seeing diminishing improvement (from 50% back to 25%) and I thought about what I was doing different. Well I lowered my vitamin d dose per day and reordered the lose dose naltrexone.

Im nearing the end of my 4th week with GcMaf and the lose naltrexone, and I feel about 35% better (with 100% being cured). Im taking low dose naltrexone once every 3 days until I can tolerate it better, and since I have been double dosing the GcMaf I will have to reorder that too.

Before the GcMAF, I really couldnt tolerate the low dose natrexone...but its interesting, I was reading about what great things low dose naltrexone was doing for MS patients. One patient was talking about having to pee 10-12 times a day and that is/was totally one of my symptoms. I had to pee really badly about every 45 mins while awake and having to pee 2-3 times at night. The low dose naltrexone seems to have normalized that for me really quickly. MS, chronic lyme disease, chronic fatigue syndrome, fibromyalgia, are so inter connected!

Ive been away from the forums for about a month, have I missed anything?

Edit: I take alot of chelation treatments, (alpha lipoic acid and edta) so I could answer any questions you have about chelation treatment, Daffodil

-Charles in NC

 

[undcvr]

Hey undcvr,

can you elaborate on why response to art is a big clue to the cause of cfs? I'm pretty convinced that my case is viral induced although the chronic inflammatory response to tiny triggers makes evaluations of antiviral treatment not so clear cut if I'm not in a toxin-free environment. I responded OK to both artesunate, wormwood, and arteminisin, but nothing significant. Valtrex also didn't make much of a dent.

Thanks,
Joey

That's a loaded question to try and answer so here goes: Most doctors will stop at Valtrex and Famvir and not prescribe Valcyte for CFS. It doesn't make any sense but they think that if you dont respond to the first 2 you should not respond to the Valcyte either. That is frankly ridiculous but whatever and if you don't test positive for active CMV EBV or HHV6 they are even less inclined to do so. Then Lerner comes along and suggests the possiblilty of a non-permissive infection where EBV is replicating inside the cell but does not spill out into the bloodstream or Montoya's concept of 'chromosomally integrated HHV6', either way, they wont show up on commercially available tests.

On the flip side of that, with so many CFS patients responding badly to such drugs on even the lowest dose, the side effects outweigh any benefits that you can get from it, it really is a lose-lose situation for PWCFs.

But Arteminisin is much more broadly tolerated than the AVs presumably because it is plant based and from the stories that I am hearing pple are actually responding to it somewhat. I took it at 600mg a day Arteminisin and found it very helpful, most symptoms gone, so again it is dose dependent. Most of the symptoms that disappeared were immune system related. Basically what these viruses do is screw up the immune system, they make the immune system fire wildly and mistake your own cells as pathogens, basically like an auto-immune condition. If you notice any of these symptoms withdraw you are on the right track.

This is even more obvious when you come of the Arteminisin at whatever dose you are taking, all your symptoms come back.

So i think that even if you are going for commercial tests and they keep coming back negative and at the sametime arteminisin works, you are on the right track and onto something and that it is virally-induced.

Mojojo did you ever try Famvir ? What was your response to it ?

 

[Daffodil]

i took artemenisin and artesunate for months but didnt notice anything. it was suggested to me by my NYC doctor as well as dr. ablashi a few yrs ago.

charles..thanks..i think it was someone else who needed chelation...i cannot remember whom....

i wonder how Gc MAF works on brain fog..

 

[undcvr]

Again Arteminisin is a dose dependent thing, I was a 600mg a day before I felt anything. Sadly most pple with CFS can't cope with the high doses

 

[Charles555nc]

The GcMaf has been one of the few things, besides chelation treatments that has made any dent in my mental symptoms-which are fairly severe. I once made the same wrong turn 4 or 5 times in a row because by the time I turned around, I had forgotten I needed to take the different turn.

GcMAF is supposed to work around nagalase (released by cancer and retroviruses) which deactivates macrophages. So with vitamin D, exercise, and GcMAF, your macrophages are supposed to work more normally. Makes sense to me that this would have an all around effect on the body.

I also find occassionally taking alpha lipoic acid and edta suppositories every 4 or 5 days help give me more better days. I think maybe when you are chronically ill, your body builds up excess heavy metals like copper, zinc, iron etc . which can further encourage bacteria and virus reproduction. Another related idea I have, is that chelation treatment breaks up bad biofilm by taking the iron/zinc/copper it uses in its outside gel to protect itself. Biofilms occur whenever the immune system is comprimised.

 

[Daffodil]

my brain just wants to keep going back to hhv6 as the cause of my fog. my cytokine profile is completely different now...the MIP1a and MIP1b are normal...azt started to work and then stopped in 2 days...petereson thinks its mostly hhv6 too. my hhv6 antibodies were sometimes a little high..and nothing else was high. the highest it ever went was 1:640.

maybe i should go back on valcyte but i find the drug a little scary, my liver doesnt respond well, ive been on it over 3 years now, and it didnt help me much before.

now...gcmaf....i want to try it....but dont want to stop the arv's, no matter what.

for hhv6 artemenisin/artesunate..i read it has to be given IV....but my NYC and ablashi did recommend it. so maybe i should try it again?

perhaps now that my immune system seems a little stronger, i can try those things that never worked before, that colostrum thing...what was it called..?

 

[undcvr]

Woah Daff, 1:640 is actually very high. High enough to consider Valcyte or Vistide. My HHV6 was at 1:320 when I started Valcyte. It is definitely the HHV6 !

Were you ever taking Valcyte at the full dose ? 900mg twice a day, unless you took it at this dosage for awhile, it is too soon so say that Valcyte does not work. I took that dose for 6 months. I am still taking it but I can tell you that dropping the dose in half and all the symptoms come back. It's like nite and day and in fact I am taking 2-3 other AVs as together with it as well. Don't ask me how I do but somehow I am and its given me my life back. I can't go back to the way I was before.

 

[mojoey]

Wow that's a hefty dose of wormwood. I've always taken 100mg of artesunate, at most 300mg of wormwood. That helped my gut a little but didn't do much for the other symptoms. I've considered getting the artesunate IVs but the source was from HK and cheney has warned patients not to put that into their veins.

I've yet to try famvir but I'm planning to. I just got a one-month supply and will try it once I move to the beach. I'm not even gonna mess around with this while I'm living in a chemical-y house...there's just no point for me with the dreaded HLA haplotype. Antivirals may work in these situations but the die-off just adds more inflammation to already elevated inflammation, a vicious cycle. 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.

Reading your experience with the dosages surely gives us a lot to think about if our current dosages don't work. Same goes for your attempts to buffer the side effects. Thanks for being a pioneer with all these antivirals and reporting back to us.

 

[undcvr]

With Famvir the dosage that I keep hearing works is 500mg 3X a day. This would be equivalent to Valtrex 1gm 3X a day.

From my experience the AVs are not a cure. You get off them and the CFS comes back. You are talking long term multi cocktail therapy to get out of this.
Right now I feel no different from an HIV patient only that I can say I am not chronically fatigued anymore.

There is a hole in our immune system, among other things, that needs to be plugged up.

 

[mojoey]

Thanks again. You make plenty of sense to me

 

[aquariusgirl]

Well, but how long is your (our ) insurance gonna pay for these drugs? I don't suppose they'll pay for them indefinitely....right?

 

[Daffodil]

well i took valcyte for 3 yrs...i did the loading dose like montoya does... and then took 2 pills a day. 2 months ago, i tried it again but gave up in 2 months. maybe i should stick with it, now that my immune system might be more able to fight off the hhv6?....but you're really only supposed to take valcyte for 6 months...we have been on it so long, won't we end up with liver cancer or something??

and since i have taken it and stopped it so many times, isnt the HHV6 resistant by now??

 

[undcvr]

Yea i know all your worries about it. I am taking 4 pills a day and tried to lower the dose to 2 pills a day after 6 months. Didn't work all my symptoms came back and I had to up it back to 4 pills a day again, along with a bunch of other AVs. Honestly rite now, you guys know more about my drug dosing compared to my docs that i see individually for each drug

I have the same worries that you have, given that Valcyte has a black box warning, but I am also taking a shitload of supplements that I hope will keep whatever side effects it has at bay and also, I finally have a life. I really don't want to give that up either.

It is possible that the viruses can become resistant to it that is why you have to move up to the dose that shuts dwn replication as soon as you can. I threw in Valtrex as well since that is what Lerner does. And because there is SOOOOOOO little research in this field, if Valcyte stops working then you are SooL and you have to turn to Vistide, the interferons or Ampligen. Like I said before, it is so lose-lose being us.

I cost my insurance almost 10K a month, I bet they sure wish I was dead after all these months.

The docs don't know a thing about what we have and about what works but I can tell you rite now, go off the AVs and all your symptoms will come back. 6 months is too short, I am not even sure there is a time frame.

One thing I can say about the black box warning on Valcyte is that when they test for a drug being a carcinogen or a mutagen, they would use animal models and test them with huge amounts. Then they would extrapolate the results to human beings, so I would take it with a grain of salt. Also if you are concerned about that then try to get hold of Vistide instead.

 

[mojoey]

I just talked to Chimerix today and they said the cmx001 (essentially oral vistide) trial is for anyone with CMV, adenovirus, or HSV. Seeing as many patients have CMV & HSV, many would seem to be eligible.

 

[undcvr]

Yea but they left out the viruses that pple with CFS most commonly have, EBV and HHV6