Antiretroviral Trial

[omerbasket]

omer ur right i didnt even remember that..its true with HIV too, i think. i will ask my doc if he could recommend something...if he lets me on another med.

thanks
sue

Just remember not to take steroids, because, at least in the case of cortisol, it can reduce inflammation but it is, by itself, something that helps XMRV replicate.

 

[Daffodil]

hi all. i am the same. some energy improvement but head is still very bad. the last 2 days, i thought maybe the valcyte was starting to work a little but today, its back to the same. i'm having a really hard time keeping spirits up. my mom has been ill too and she is my caregiver, so depression is rearing its head.

i've tried everything for my head - ARV's, Valcyte, Valtrex, abx....i am just so worried this swelling will last till i die. it just never lets up. i am willing to take out a loan and travel to get help but there is nowhere to go.

should i try GcMAF? my doctor will never go for it and i dont want to stop ARV's.

 

[ukxmrv]

Sending you a big hug as I don't know anything about GcMaf. Really sorry that you Mom is ill as well at the moment.

((((Daffodil))))

 

[Daffodil]

{{{{{uk}}}} thanks, uk.

 

[Daffodil]

hi all. there was a poster on this forum and i think her name was Cloud. she listed some test results after she took cidofovir and her markers had improved. i keep looking for this post but cannot find it. i tried advanced search but it says there is no one with that name. if anyone can help, would really appreciate it. thanks

 

[undcvr]

Yea I am looking for that same post Daff, she listed some tests that she took for liver and stuff. Also she was xmrv+ when she went on Vistide and it still helped her enuf to recover. As far as i can tell the whole xmrv thing is dead.

 

[Sushi]

hi all. there was a poster on this forum and i think her name was Cloud. she listed some test results after she took cidofovir and her markers had improved. i keep looking for this post but cannot find it.

Just a note: I think Cloud is a man! If I remember correctly.

Sushi

 

[Michael Dessin]

Undcvr/Jasper-- You've said alot of really good info in your posts, I think your really accurate on much of it. Hang in Sue

 

[aquariusgirl]

Sue, Really sorry to hear you are in so much pain. One random thought....Ignore it if it's not useful. I don't think I've ever heard other PWCs complain of the brain swelling you mention.. could this be symptomatic of something else? Maybe yr docs need to think outside the box?

also, at the last autism one conference...Dr Jeff Bradstreet was saying that a form of vistide encapsulated in liposomes is in development & this would allow for lower doses of this very toxic drug to be used.

Sue, he also talked about stem cell transplants from adipose fat being used to treat inflammation. He said it can be done for significantly cheaper than the $15,000 that other stem cell procedures can run.

I wish I could help sue. Empty words I know. Sending you healing energy.

 

[aquariusgirl]

sue:yr comment about cytokines in the blood not reflecting what's going on in the brain.
At Autism One Dr Bradstreet said TNF alpha can be low in the blood, or maybe normal, (can't remember the wording) but high in the cerebrospinal fluid.

he was talking about the kids of course.

random thought: wonder if your TNFa is stuck on "on"?

(see i don't think u have the same brain fog as I do ...because yr grasp of stuff is a million times better....)

also, undrcvr, i ran into the parent of an autistic kid and his kid is doing well on steroids. He had been doing steroid therapy for a year. Previously he did Yasko, Valtrex, IVIG (for a long period.)

 

[undcvr]

Daff, you methylating ? Keep doing it even if nothing comes of it, if you can tolerate it, it is helpful. Keep detoxing your liver too.

 

[Daffodil]

hi all. thanks a lot for the messages. i am too foggy to reply to them, though lol

my TNFa was normal 5 months into the ARV's (<14) and then spiked up to 4559.7 after a year of ARV's (normal is <27). God knows what this all means!

i dont know what methylation is and i am too brain dead to learn right now!

i cannot believe this mess. all i do is take pills, literally ALL day. and they make me feel so nauseaus. is this how i am supposed to spend the few yrs i have left? is this a life??? they havent even done an ARV trial yet, let alone come up with a new med....hell they cant even figure out why we are sick and agree on it.

i know i'm just taking valcyte for nothing. ive already taken it 3 yrs. whenever i add another poison, i feel ill and toxic...and it doesnt help. and when i stop taking it, i somehow feel even worse. wtf

arent we basically screwed? and by screwed, i mean....won't we just drop dead before anything is done?
oh hell

i saw a new beyonce video today. i used to be able to dance. how wonderful it was.

 

[Daffodil]

a woman tried azt in 1997 for cfs. i found this on alt.med.google. she says she felt better but couldnt afford it:

http://groups.google.com/group/alt....fbcfc47121f561?lnk=gst&q=azt#03fbcfc47121f561

 

[undcvr]

It seems that Cloud has left PR. His ID here is no longer active so all his posts have been removed too.

 

[aquariusgirl]

That's a shame. He was one )the only?) peterson patient we had here and a useful contributor. I hope he didn't leave over some silly virtual argument ....Sigh.

 

[Daffodil]

i stopped valcyte. was experiencing a lot of nausea...not even sure if it was related to valcyte. having very bad night due to running too many errands yesterday. brain / neck is very bad. feeling very hopeless and depressed.

nice page on cytokines:

http://memorize.com/cytokines/blackbeltmd

 

[Daffodil]

hi all. i have also stopped azt. this is probably my imagination, but i think there might be a new, minor indentation in my face. also, if AZT was going to help my brain fog, it probably would have done so already.

since i stopped 2 meds, my brain is getting VERY bad now. this always happens. although it is a long shot, i need to have my spinal fluid tested for herpes viruses ..if they can find something, i might be able to get Vistide paid for here. i dont really have any other hope right now.

i was thinking of going to peterson but he requires so much testing which i would have to pay for out-of-pocket..and nevada is so far. i was going to make an appt with natelson ...that would be a lot closer for me and i could stay with relatives..but he is expensive too...and a spinal tap might not be guaranteed. so i just made an appt with a very good neurologist in detroit who deals with a lot of HIV encephalitis and MS....maybe he will help. he is reasonably priced...and detroit hospitals have great discounts for canadians/international patients.

i have had very bad luck with neurologists thoughout my illness...i just hope this goes better. if it doesn't, i will maybe try natelson (if i have any money left). i know he did a spinal tap on someone in 2007 and the fluid was processed at viracor - a top notch lab - but no herpes viruses were found.

thanks for reading
sue

 

[Daffodil]

oh i forgot to mention....the energy level in my body is pretty good. its like my head belongs on a different body altogether. the medicine is really helping me from the neck down.

 

[Daffodil]

just found out natelson might be doing spinal taps later this summer but it wont be on anyone who is on "brain active" medication...i guess that means antivirals....

 

[Sushi]

Hey Daffodil,

I am reposting this from the GcMAF thread as I thought it might be interesting to you:

Cansado:
Yes Froufox I also have the idea that Nexavir reduces the brain inflamation. My feeling is hereby confirmed! But it can make me feel very tired also. I am going to cut back a little and have my NK cells tested in 6 months or so with Dr. Enlander...see what happens.
Big hugs

.

Best Sushi