Antiretroviral Trial

[shannah]

Heh Sue,

Did you read this?

"She stated that her move to Translational Research Director was due to the recognition that this was the next step for her. She suggested that a few amino acid alterations in the LTR regions of the virus (as I remember ) would be enough to make the antiretrovirals that are currently available ineffective in humans."

under 'A Talk With Dr. Mikovits' (second paragraph) about 1/4 of the page into the article.

http://phoenixrising.me/?p=5269&utm...+From+Phoenix+Rising)&utm_content=Yahoo!+Mail

 

[Daffodil]

thanks shannah. i just read the article. i watched part 1 of the presentation on youtube but couldnt find part 2 or 3.

dont see how i can survive another 3 or 4 years until there is some kind of help.

 

[Daffodil]

has anyone heard anything about the CAA/GSK study? are there any rumors? do you think it will be positive?

 

[omerbasket]

Heh Sue,

Did you read this?

"She stated that her move to Translational Research Director was due to the recognition that this was the next step for her. She suggested that a few amino acid alterations in the LTR regions of the virus (as I remember ) would be enough to make the antiretrovirals that are currently available ineffective in humans."

under 'A Talk With Dr. Mikovits' (second paragraph) about 1/4 of the page into the article.

http://phoenixrising.me/?p=5269&utm...+From+Phoenix+Rising)&utm_content=Yahoo!+Mail

Sue, if that is correct, and it's possible that you have an MLV that is not exactly VP62 or almost exactly it, then perhaps some or all of the antireteovirals that you're taking are not acting against it, and other antiretrovirals that didn't act against XMRV can act against the MLV that you have?

Have you contacted Dr. Mikovits about that?

 

[Daffodil]

und..what is vermox?

und...i read that but someone told me they contacted her and what she meant was this:

"two amino acids in a rat gamma retrovirus changes the tropism to brain endothelial cells"

 

[Daffodil]

saw ID doc. bloodwork OK...wont let me try valcyte yet. wont give me deplin or even b12!! will have to find a GP i can travel to. took blood to send to VIP but forgot to centrifuge cuz of my damn brain fog. will have to go back tuesday lol

im paying like HELL for going downtown. woke up drenched in sweat. still better on the drugs.

maybe VIP bloodwork will show improvement?

am looking into myer's cocktail and HBOT...maybe try to alleviate my suffering a little if i can afford it.

sue
xoxo

 

[undcvr]

You should be able to get some Methyl folate (Deplin) on your own from the supplement store. Solgar's is 800mcg a nice low dose for you lol. They have methyl B12s in low doses too.

But honestly I think the whole B12 methylation therapy thing is overhyped, at least for pple with cfs anyway. It will prob help you some but it is hardly near a cure. But I know that for most of us, some recovery is enough of a start.

 

[Daffodil]

hello. my doc OK'd a trial of valcyte. does anyone out there remember the correct dose for HHV6 that montoya was using?

thanks,
sue
xo

 

[SOC]

hello. my doc OK'd a trial of valcyte. does anyone out there remember the correct dose for HHV6 that montoya was using?

thanks,
sue
xo

I can tell you the dosage Dr Lerner put my daughter and I on, if it's any help -- 450mg: 2 in the morning and 1 in the evening. He had us start a little slow, though. I think we started with 1 in the morning for 3 days, then add the evening one for 3 days, then add the second morning one. I'm not exactly sure about that part.

 

[undcvr]

I pvt msg you the dosage that is commonly followed for kidney transplants in CMV patients. Dont follow me but I am on 1800mg a day for almost 6 months now. As well as Isentress and Valtrex.

I really recommend Isentress and Valcyte together to start with first.
If your insurance pays take Leucovorin (formyl folate) or Deplin (Methyl folate) to counter the side effects of Valctye, namely Leukoprenia.

Again check with your doc first.

 

[Daffodil]

thanks, guys. i am so tired of this and depressed. i dont think anything is going to help me anymore. its too late. my brain has been swollen for too long

 

[Charles555nc]

Methyl folate and methyl cobalamin havent reduced my symptoms, but have given me a better feeling all around. I just started yesterday. I looked into methylation and they were recemmended, although I still dont understand what methylation is or whether I should be increasing or decreasing it. I have read later that both are good for nerves and slightly anti depressant.

Gonna add some B6 later...

 

[ukxmrv]

Hold on there Daffoldil

The invest in ME conference in May (not long off now) should give us an idea on clinical trials for XMRV

That's what I am waiting for

 

[Charles555nc]

Sleeping better and still feeling better on the methyl folate and methyl cobalamin, added b6, a tiny amount of selenium, and SAMe (also supposed to be involved in methylation)

 

[Daffodil]

i feel so stupid for hoping all this time, actually believing i would get better. there wont be any coming back from this.....19 yrs....new med will take a decade at least. thats if xmrv even pans out. i am so foggy and depressed. i dont see any hope at all

 

[ukxmrv]

It's still not too late Daffodil. Been nearly 30 years for me. We learn more about XMRV every month. The clinical trials news at the Invest in ME conference may give us some more ideas. Hang on in there.

 

[Navid]

ukxmrv:

clinical trial news at invest in me? is that a fact?!?!?!

thanks

 

[liquid sky]

Hi Daffodil, I am 19 years into this too. I have a huge mental thing about crossing the 20 year mark. I have hope that this year will see further light into retroviruses. I do believe this is reversible, even the brain function. So hold on, there are people out there who really do want to help us.

 

[shannah]

From Dr. Kogelnik's recent talk:


"Neurological Testing: Improved MRI technology has shown that about 60% of patients with severe cognitive impairment had white-matter changes (spots/lesions on the white matter) in their brains that correlate with cognitive flare-ups. The lesions resolve as the severe cognitive-impairment flares resolve. This does not correspond to anything that is known in medicine. Radiologists have compared these changes to those happening in HIV patients with encephalitis, but Dr. K. stressed that CFS is a different disease than HIV."

http://thoughtsaboutme.wordpress.co...ting-chronic-fatigue-syndrome-and-immunology/

 

[Sushi]

i feel so stupid for hoping all this time, actually believing i would get better. there wont be any coming back from this.....19 yrs....new med will take a decade at least. thats if xmrv even pans out. i am so foggy and depressed. i dont see any hope at all

Please Daffodil,

Don't forget the possibility that GcMAF could help you. I have now had 13 shots (13 weeks) and it is truly helping. I just did a 22 hour flight from Belgium to the western US and made it--something I never thought I could do. In combo with Nexavir (which I'll start as soon as I can get my hands on it), it is helping the majority who are taking it--and that is several hundred.

Best wishes,
Sushi