Antiretroviral Trial

[Daffodil]

hi und. thanks i tried LDN for 3 or 4 months i think....and valcyte+valtrex for 3 yrs

re: ARVs: i have done about 10 months of ARV's now. it is a total roller coaster ride, and a mostly bad one. the last few days have been better and today is OK too. there is less brain inflammation but i am still very, very tired. some chest pain from AZT.

feeling hopeful again, but you know how that goes!

my t3 was slightly below normal on last blood work....wonder if this means something. doctor suggests retesting in a while.

love
sue
xoxo

 

[Daffodil]

a patient has contacted me and claims 90% recovery after 12 yrs of illness. she began AZT on her own, shortly after the original Science publication by mikovits/lombardi, obtaining the drug from mexico(?). she started to feel better very quickly. she is now on only RAL+TDF, having to stop AZT due to anemia.

 

[ukxmrv]

that must be really frustrating for you Sue. So that quick and esp if she started feeling better quickly. Do you know who is treating this lucky person?

 

[Daffodil]

hi uk. no idea....but i messaged her to ask for her email...hope she replies

 

[Daffodil]

hi all just wanted to mention that i have decided to take 500 mg AZT instead of 600mg. i did switch to 400 for a while but didnt feel it was enough. ill have to open a capsule and divide the powder.

 

[ukxmrv]

Daffodil, wishing you all the best for dividing up that powder and taking the new dose. Hope it proves a good midway dosage.

 

[Daffodil]

{{{{uk}}}}} thank you.
xoxoxox

 

[heapsreal]

hi sue,
hows things? hope r feeling better. How much improvement do u think u have made from when u started arvs to today, do u think it has been worth whiled trying. My doc is looking into xmrv testing but not sure if i would consider arvs yet as i have improved on my current schedule, its just this dam sleep which is really my problem now.

good luck,
cheers!!!

 

[Daffodil]

hi heap. i am still pretty sick BUT i was much worse before...so yes, it has definitely been worthwhile, no question.

i dont blame you for waiting. i dont see how anyone can make any decisions with so many unknowns.

if AZT wasn't part of the picture, starting ARV's early would look more attractive for a lot of people, i think.

sue
xoxo

 

[pinkytuscadaro]

Daff,
I have read that there has been no difference in outcome while using azt?
I am starting on Ralt and tenofovir as soon as the script arrives in the mail.
I hope that my insurance will not hold things up.
Daff, I am so happy to hear that you feel that you are a bit better than before starting!!!!!!!
I have read all of your posts and did not get that you were doing any better only worse.
How many months were you on the meds before you felt that they were making a difference?
I don't know if I could go through everything that you have while on the AV meds. I sure hope that it is an easier go for me but because of you if I do get really sick on them I will know to keep at it. Thank you for that!!!
Please let us know in what ways you are feeling better?
I have been reading your blog for months waiting to hear good new
Pinky

 

[illsince1977]

Daff,
I have read that there has been no difference in outcome while using azt?
I am starting on Ralt and tenofovir as soon as the script arrives in the mail.
Pinky

Where did you read information that there has been no difference in outcomes without AZT vs. with AZT?

 

[Daffodil]

illness...mikovits mentioned that people on RAZ+TDF seem to be doing better, probably because of AZT side-effects.

i am still doing better. its been quite a few days now, where my inflammation feeling in the brain has been less. a little clearing. i still have this bone-crushing exhaustion and chest discomfort (partly from the AZT?). i am now on 500 mg AZT/day instead of 600.

despite still being mostly homebound, the odd day when i do have to go out and run errands, i notice that once i get going, i have significantly more energy. i can walk around longer and have more motivation. i still, however, pay for this the next couple of days.

its been a good 10 months on ARV's and still a very long way to go.

people who begin ARV's after decades of severe illness should know that they might have to wait a long time to see any results!

sue
xoxo

 

[Cort]

Well congratulations! I just hope to God that it keeps up and you keep feeling better. You richly deserve abundant health after all this. Good luck!

 

[Daffodil]

thank you cort i really think the worst of it might be over now.

its funny. my ID doctor said he would be very surprised if i improved now, since i have been on the ARVs for over 10 months...but i guess he was wrong.

sue
xoxox

 

[Charles555nc]

A comment from: http://www.cfscentral.com/2010/07/haart-and-iris.html

Gerwyn said...
The situation with XMRV and its effects on the immune system is quite complex.In essence it is a TH2/TH17 pattern of immunomodulation.Low Nk function is part of a much wider pattern of abnormality. It is unlikely that antiretrovirals will work on their own.Unlike a lentivirus such as HIV xmrv has a much lower replication rate and spends a great deal of its life cycle integrated into the hosts DNA.Hence inhibiting the viruses replication while desirable is not the major factor.XMRV is a MuLV class virus.Other viruses of this class,when integrated into the hosts DNA,cause the same pattern of immodulation as seen in people with CCC ME/cfs.They do so by inserting into the start codons of genes that regulate the immune system. Such an insertion can either upregulation ,or more commonly, the silencing of these genes.A number of studies have demonstrated that this pattern of immunomodulation actually serves to keep the virus latent.We are thus left with the issue of eradicating this latent virus resevoir. They have a similar problem with treating the Aids virus albeit on a much smaller scale.The drug which appears able to excise HIV from its points of insertion in the DNA is prostratin and I also believe new drugs that achieve the same ends are also available.Without being able to excise the XMRV provirus antiretrovirals (with the possible exception of restrictase inhibitors, are unlikely to have an effectiveness profile which outweighs the considerable risks of long term antiretroviral triple therapy.The dangers of antretroviral therapy may well be exacerbated in people with ME because of pre-existing mitochondrial damage

Seems like prostratin+raltegravir (which also is supposed to help eradicate latent virus) is the cfs community's new hope, combined with other antiretrovirals.

I recently got to a point where I thought I was gonna die, so I retried low dose naltrexone and ordered some tenovir off the internet. Seems to have bought me some time. The low dose naltrexone I can only take once a week, so I may stop that. It makes me feel like someone beat me half to death.

Daffodil, can any of your big time scientist friends speculate about when we can get our greedy hands on this prostatin?
I just turned 31 yesterday and Im home bound

 

[Daffodil]

hi charles. there is NO way you could get prostratin! i dont imagine that even sickest AIDS patients can get it yet. human trials start this year! it does sound like a lovely drug...everyone is praying it pans out. you can contact the AIDS Research Alliance for more info.

maybe ask gerwyn if he thinks taking valproic acid might help us...that has been shown to re-activate HIV and HTLV and might decrease reservoirs for us too?

sue
xoxo

 

[Charles555nc]

Ill try and sign up to post a comment on that link I provided, I dont know Gerwyn personally. Only thing Ive read that makes XMRV reproduce faster is testosterone. Exercise boosts testosterone, maybe thats why exercise really makes us suffer so much...but could be good when on ARVs for awhile?

 

[lansbergen]

Only thing Ive read that makes XMRV reproduce faster is testosterone.

There is more http://www.ncbi.nlm.nih.gov/pubmed/21270144


J. Virol. 2011 Jan 26. [Epub ahead of print]

NF-{kappa}B Activation Stimulates Transcription and Replication of Xenotropic Murine Leukemia Virus-Related Virus in Human B-lineage and Prostate Carcinoma Cells.

Sakakibara S, Sakakibara K, Tosato G.

Laboratory of Cellular Oncology, and Laboratory of Cancer Biology and Genetics, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD 20892, USA.

Abstract

Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus linked to prostate carcinoma and chronic fatigue syndrome. Here we report that NF-κB activation can markedly increase XMRV production. The inflammatory cytokine TNFα, which activates NF-κB, significantly augmented viral Gag protein production in XMRV-infected cells. Reporter assays showed that TNFα and Epstein-Barr virus LMP1 (latent membrane protein 1), an intrinsic NF-κB activator, increased LTR-dependent XMRV transcription. We identify two NF-κB binding sites (designated κB-1 and κB-2) in the long terminal repeat (LTR) U3 region of XMRV, and demonstrate that both sites bind to the NF-κB component p65/RelA. Mutation of the κB-1 site, but not the κB-2 site, impaired responsiveness to TNFα and LMP1 in reporter assays. A mutant XMRV at the κB-1 site replicated significantly less efficiently than the wild-type XMRV in the prostate carcinoma LNCaP, DU145 and PC3 cell lines, HEK293 cells, the EBV-immortalized cell line IB4 and the Burkitt's lymphoma cell line BJAB. These results demonstrate that TNFα and EBV LMP1 enhance XMRV replication in prostate carcinoma and B-lineage cells through the κB-1 site in the XMRV LTR, suggesting that inflammation, EBV infection and other conditions leading to NF-κB activation may promote XMRV spread in man.

 

[Daffodil]

charles...i dont think increasing XMRV reproduction would be good....i think we would want to wake up latent provirus...

maybe the WPI will be trying out some new things on patients and we will hear about it..? i hope

lol i have no more big time scientist friends who reply to my emails. i guess i can make a pest of myself when i am desperate~!

sue
xoxo

 

[alice1]

sue I'm so happy you're feeling a bit better and I think the only way you were going to get any help was to be on top of all these ahem experts.
keep it up!!