Antiretroviral Trial

[omerbasket]

thanks a lot jen...

unfortunately, i live in a condo and do not have a balcony but i have been trying to get outside more lately.

i communicated with dr. deckoff-jones by email so i know she is doing very well and was even able to attend the WPI opening in reno!

i just dont feel like anything can be worse than this so i am trying anything that has a chance....

sue
xoxox

Sue, the new study about antiretrovirals that works in vitro against XMRV added another drug - adefovir. Perhaps it would be worth trying it, besides your current drug administration or instead of a drug which would seem to you and/or your doctor the least helpful one?

Also - there is the new study about Ampligen. Is it possible for you to try Ampligen?

 

[grant107]

I wish more people who are on antiretrovirals would report so we could know how they are doing.

 

[Daffodil]

thanks omer. unfortunately, there is no one who will prescribe ampligen here right now. thanks for letting me know about adefovir; i will ask my doc about it. my doc is about ready to yank me off the HIV meds anyway so i kind of doubt he will let me try other ones.

i have been waiting impatiently for a time that i can get blood drawn to send to VIP and see if my NK cell function has maybe risen or something. i read once about a long-term patient on ampligen who was still sick after 6 months on the drug but had a spike in his NK cells. unfortunately, i could not find out what happened to him later.

grant...me2. there are a few docs out there who are trying ARV's...more info needs to come out now. i am anxious for the next mikovits publication about immune markers and also the lyme conference, in which 2 pro-xmrv docs will be speaking in NJ in october (burrascano and brewer)

 

[citybug]

I like the idea of lying outside. Someone drove me to the country for a few days (yeah that never happens to me either). I think I felt a little better from not having to detoxify the air it's been so bad this summer. also people wiped me out so I would just lie down and stare at ceiling.

Hoping when WPI opens soon they'll have ampligen and everything that is available. And peptide T.

 

[xrayspex]

peptide t

yes, when is the peptide t supposed to be available? and when is WPI slated to open its doors?
( I only read first and last page of this thread, will come back and read rest later but have to leave soon, sorry if my question addressed earlier)

 

[Daffodil]

hi all. feel pretty bad still...night sweats and generally feeling hot..twitching has started up again...and more lymph node pain. head feels bad with lots of fog and some headaches. i am pretty sure that the drugs worked a little but have stopped. dont know if my infections have become resistant (maybe cuz of all the valtrex and valcyte i took?) or what infection i even have. been tested for everything.

i am due to send blood to VIP on tuesday for more testing and the new serology.

trying to keep up hope but it's hard now.

 

[citybug]

The Hillerby, Dr. Lombardi radio talk that was posted this week seemed optimistic about opening this winter and running trials. They didn't talk about doing patient treatment outside of studies. They were positive about antiretrovirals but said consult your local doctor. I'm having night sweats too, and vertigo, haven''t been tested. Yesterday thought was intestinal, today not sure. Could florinef do it?

 

[Daffodil]

hi kdp. i dont know anything about florinef....thanks for telling me about the radio talk.

i thought they were opening this winter and were going to start treating patients...but who knows.

i also still have chest discomfort and tachycardia. i am used to the tachycardia now so i dont really notice or get bothered by it anymore but when i do check my heart rate, it is sometimes over 100 at rest!

the tachycardia started when i started the ARV's

 

[WestOzGirl]

Speculating here....I've recently read gammaretroviruses spend the majority of their lifecycle in the post integrative latent phase. This may be the reason why HAART is not a totally effective treatment.
Could the reason Dr Deckoff-Jones and her daughter are responding well to HAART be due to the fact that the gammaretrovirus is being stimulated out of the postintegrative phase by the use of hormone therapy? I have noticed both are taking hormones and it is accepted hormones stimulate the activation of XMRV.

 

[Daffodil]

west....great theory! guess we wont know for a while....

a researcher "in the know" told me this: There are many patients out there that are definitely being helped by anti-retroviral treatment...."

maybe they havent been sick long....?

 

[Cloud]

Speculating here....I've recently read gammaretroviruses spend the majority of their lifecycle in the post integrative latent phase. This may be the reason why HAART is not a totally effective treatment.
Could the reason Dr Deckoff-Jones and her daughter are responding well to HAART be due to the fact that the gammaretrovirus is being stimulated out of the postintegrative phase by the use of hormone therapy? I have noticed both are taking hormones and it is accepted hormones stimulate the activation of XMRV.

Very interesting. I was concerned the hormone Tx would be detrimental for her....never crossed my mind that it could be good. Other Tx (ie, Lyme & CPN) sometimes focus on getting the pathogens out of hidng as well.

 

[mojoey]

Very interesting. I was concerned the hormone Tx would be detrimental for her....never crossed my mind that it could be good. Other Tx (ie, Lyme & CPN) sometimes focus on getting the pathogens out of hidng as well.

In fact, some of the treatments being used for HIV eradication are aimed at "teasing" the HIV out of latency in reservoirs.

On an aside, I noticed that ampligen works on the TLR3 receptor, which activates NF kappa-b. Judy said we need to downregulate NF k-b at all costs.

I don't think we really know what exactly it means that XMRV is activated by hormones. For all we know it could turn out to be half the treatment for it.

 

[urbantravels]

Interesting point. I've often reflected on the fact that so many women get ME/CFS in middle age - 40s and 50s. I got whacked down by it six weeks before my 41st birthday. Obviously this is a time of life when we're heading toward menopause, and it seems quite possible that something about hormonal changes during this time either activates or potentiates some triggering process.

 

[Navid]

Interesting point. I've often reflected on the fact that so many women get ME/CFS in middle age - 40s and 50s. I got whacked down by it six weeks before my 41st birthday. Obviously this is a time of life when we're heading toward menopause, and it seems quite possible that something about hormonal changes during this time either activates or potentiates some triggering process.

i was wacked down by it it 4.5 months b/f my 41st birthday....after taking massive hormones for infertility treatment....hmmmmmm, aahhhhhhh : )

 

[grant107]

I came down with cfs after menopause. I was taking hormones but it was less than the body produces, I think. I still take hormones but much less.

 

[xrayspex]

daffodil I tried florinef for the Orthostatic hypotension and it made my heart race incredibly, could not stand it. some people like it who arent as mcs.
I like this hawthorne paste i get from natural pharmacy local a couple times a day, got idea to try that herb from Cheney.

I was on the pill at age 18 in 78 on and off and I bet the strength of it was not a good thing and it was probly one of my risk factors for cfs which finally hit fullblown after a surgery (gallbladder=g.b.) at age 29, I was in good shape so g.b. didnt get bad from being fat or old, but I heard the pill is a risk factor for g.b. probs but so is underlying CFS according to cheney, lots of cholecystectotomies in Lake Tahoe in 80s w/CFS peeps. I also had regular moon cycle but awful pms in 20s 30s and then abrupt menopause end of it all age 45 and along with it the bulk of my previously good libido but I have to say one good thing about menopause is less up and down with cfs stuff, at least related to cycle.....used to have like 1-3 days of my period where spine was like a noodle and weak. that is gone but was clockwork before, hated that. I have tried bioidentical (after read suzanne sommers) and can't tolerate but going to try again, in even lower minute dose, especially now that I see Dr Jamie does it and maybe it helps w/treating the virus in weird way as proposed by ozgirl.

I think being on the pill when I was young esp when it was stronger in late 70s and 80s was not good, esp since I didnt have cycle probs etc, it was strictly for fun.......so hormones were a risk factor for cfs back then I bet as was the resulting behavior......sorta like the boys in the band played on back then all around......

 

[Rrrr]

sue, can you tell us how you are doing?

 

[Daffodil]

hi Rrrr. i was just signing on to post. I have been reluctant to post the last few days because i did not know how long it would last....but over the last 3 days, i have been on an upswing. i have gone out almost daily, sometimes for several hours, and have not felt that bad. my mind is a little clearer (this area seems the most resistant to improvement for me, for some reason). the chest pain has also improved.

i catch myself smiling, humming, whistling, etc lol

next week i might become severely ill and desperately miserable again....but now i am really wondering whether my loooooooong periods of illness mean the drugs are working...? i just cannot be sure of anything.

i sent a lot of blood off to nevada today and when i get some results, i will report them here.

thanks for asking...

love
sue

ps..forgot to mention..i have had a lot of bloating too and dont feel like eating much. that is probably from the drugs. i still feel hot a lot of the time but the night sweats have subsided for the time being.

 

[shannah]

That's fantastic Daffodil!

Maybe it just needed time or the increased inflammation to subside.

However long it lasts - enjoy. But let's hope this is a turning point for you.

 

[Rrrr]

I AM SOOOOOOO HAPPY FOR YOU!!!!!!!

and i totally know the singing thing. when i'm having a good day, i find myself singing to myself.

YAY, SUE!!