Antiretroviral Trial
- Thread starter Daffodil
- Start date
TheMoonIsBlue
Senior Member
- Messages
- 442
Hi Vli, you could call VIPDx and ask. I don't think the new serology test is really that new........I believe Daffodil sent her blood in quite a while ago and just got her results and she had the Serology that detected XMRV and Human Gamma Retroviruses and MLV's.
If you look on the VIP site there is the "XMRV by virus culture" test which is $450.00 and the Serology Assay (detectes antibodies to HGR'v and MLV's retroviruses) which is $249.00, or if ordered together $549.00
Wow Sue, that's Incredible! Now you know at least you are treating the right thing. ARVs are rough, and at least you are months or years ahead of us in treatment. Maybe Actos makes the difference in brain inflammation or cardiac. Is anyone keeping a chart on the different people trying ARV's and markers? I'd prefer not to have AZT because of the mito issues if I could get on anything.
This video about using a heart monitor to stay in envelope brought home how much i'm probably overdoing it (by standing up).
http://vimeo.com/groups/whataboutme/videos/16263125 Maybe that would help on the good days to not overdo it.
When I was doing better. It was always horrible in PMS week.
Watched the IiME Cheney section. Amazing how bad our heart filling problem is. And someone was talking about brain inflammation creating depression.
CFSAC brain person said it's our processing speed that is messed up. I think your brain works well too. You did a lot of research on this, plan tests, write etc. wooooooweeee, serology test rocks!
This video about using a heart monitor to stay in envelope brought home how much i'm probably overdoing it (by standing up).
http://vimeo.com/groups/whataboutme/videos/16263125 Maybe that would help on the good days to not overdo it.
When I was doing better. It was always horrible in PMS week.
Watched the IiME Cheney section. Amazing how bad our heart filling problem is. And someone was talking about brain inflammation creating depression.
CFSAC brain person said it's our processing speed that is messed up. I think your brain works well too. You did a lot of research on this, plan tests, write etc. wooooooweeee, serology test rocks!
heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,228
- Location
- australia (brisbane)
good on ya Sue, keep going with those retro pills now.
cheers!!!
cheers!!!
Daffodil
Senior Member
- Messages
- 5,894
thanks again, guys! i am now scared to take even lower dose AZT, even with Actos. I think AZT was doing something really bad to my heart. However, I have not had even 1 good day for weeks now so AZT was probably impacting the infection.....and maybe the heart thing is due to an IRIS-like syndrome.....but then I keep reading how AZT causes cardiac tissue damage at even lower doses! argh.
Come to think of it, I am not sure I know anyone who has been on ARV's as long as I have and is doing this poorly. 2 months ago, I was feeling much better than I am now. If this is all going to be about CNS penetration of the drugs, then I am in trouble.
Does anyone know what Klimas is going to prescribe? GcMAF? Peptide T???
If I have a lot of macrophages that are infected in my brain, what does it mean??? Will they die off???
Come to think of it, I am not sure I know anyone who has been on ARV's as long as I have and is doing this poorly. 2 months ago, I was feeling much better than I am now. If this is all going to be about CNS penetration of the drugs, then I am in trouble.
Does anyone know what Klimas is going to prescribe? GcMAF? Peptide T???
If I have a lot of macrophages that are infected in my brain, what does it mean??? Will they die off???
yay
congrats sue....welcome to the crazy club of ppl happy to have a RV. you knew it all along, good for you to push and push for the experimental treatment. you are a warrior and a trailblazer. now let's just hope they find a kind and gentle treatment that gets us well quickly!!!!!
hugs, sheba
congrats sue....welcome to the crazy club of ppl happy to have a RV. you knew it all along, good for you to push and push for the experimental treatment. you are a warrior and a trailblazer. now let's just hope they find a kind and gentle treatment that gets us well quickly!!!!!
hugs, sheba
- Messages
- 57
- Location
- colorado, US
- Messages
- 57
- Location
- colorado, US
rofl, ~HUG!~
shannah
Senior Member
- Messages
- 1,429
Well, this must be a big rellief Sue in the midst of all the furstrating months waiting for a definitive answer. Just shows how difficult these MLV's are to find - even with the best people and the best available tests looking for them eh?
Bring on the treatments!
Bring on the treatments!
omerbasket
Senior Member
- Messages
- 510
First of all, Sue, congratulations! :Retro smile:
Now, I wonder: As far as I know the antibody test should be positive if a person have either XMRV or other MLV-related viruses. Now, since you've tested negative for culture and for WPI's old serology test (which was just about XMRV?), it might be possible that you don't have XMRV, and you do have anotther MLV-related virus. And in that case - I think that it might change the treatments - meaning that it might say that some drugs that are effective against XMRV would not be effective against your MLV-related virus, and that other drugs which have not been shown effective against XMRV would be effective against you MLV-related virus.
But hod do we know which drug? At this time, we don't know it. But it might be worthwhile to look for studies that tested what drugs are effective against MLVs, perhaps especially polytropic MLVs, because the viruses that were found in the NIH/FDA study were (at least some of them - I don't remember if all of them) more closely related to polyropic MLVs than to xenotropic MLVs or other known MLVs.
And one other thing for whoever is confused (and correct me if I'm wrong): Sue's blood was previously checked for XMRV in WPI, with the serology that they used in the "Science" paper. Now Sue's blood was checked again, this time in VIP Dx, with a serology test that might be an improved one (might be better than the serology test in the "Science" paper), and that should detect XMRV as well as other MLV-related viruses (I don't know if the srology in the science paper would have done that). So, it's not that VIP Dx had a serology test and now have a newer one - the "old serology" test is a test which the WPI (as oppose to VIP Dx) performed (and it wasn't a commercial test).
Now, I wonder: As far as I know the antibody test should be positive if a person have either XMRV or other MLV-related viruses. Now, since you've tested negative for culture and for WPI's old serology test (which was just about XMRV?), it might be possible that you don't have XMRV, and you do have anotther MLV-related virus. And in that case - I think that it might change the treatments - meaning that it might say that some drugs that are effective against XMRV would not be effective against your MLV-related virus, and that other drugs which have not been shown effective against XMRV would be effective against you MLV-related virus.
But hod do we know which drug? At this time, we don't know it. But it might be worthwhile to look for studies that tested what drugs are effective against MLVs, perhaps especially polytropic MLVs, because the viruses that were found in the NIH/FDA study were (at least some of them - I don't remember if all of them) more closely related to polyropic MLVs than to xenotropic MLVs or other known MLVs.
And one other thing for whoever is confused (and correct me if I'm wrong): Sue's blood was previously checked for XMRV in WPI, with the serology that they used in the "Science" paper. Now Sue's blood was checked again, this time in VIP Dx, with a serology test that might be an improved one (might be better than the serology test in the "Science" paper), and that should detect XMRV as well as other MLV-related viruses (I don't know if the srology in the science paper would have done that). So, it's not that VIP Dx had a serology test and now have a newer one - the "old serology" test is a test which the WPI (as oppose to VIP Dx) performed (and it wasn't a commercial test).
illsince1977
A shadow of my former self
- Messages
- 356
Sue-
So happy for you! Welcome to the "after x years, I finally have an answer!" club.
So happy for you! Welcome to the "after x years, I finally have an answer!" club.
Daffodil or Sue welcome to our club. You are way ahead too on your meds. It is a real weird feeling when you first find out you do feel vindicative. It has to be something bad to cause all these problems we have. I just knew you were Sue! Yeh we are depressed we are tired of this crap. Now tell all them to get a shrink!
Take care
Susie
Daffodil
Senior Member
- Messages
- 5,894
thanks everyone!
nventor...you were negative with the NEW VIP serology test? dr. lombardi told me the ARV's shouldnt affect the test...are you going to retest? there was someone saying they tested negative for antibodies but positive to culture! unbelievable. were the ARV's helping you?
as for how i am doing....i think the AZT was helping my brain inflammation so i wish i could have stayed on it. i am not doing horribly..things are tolerable....but i am not having the same break-through days i had on the AZT. not sure how to proceed.
everyone's support and comaraderie means so much..thank you
sue
xoxo
nventor...you were negative with the NEW VIP serology test? dr. lombardi told me the ARV's shouldnt affect the test...are you going to retest? there was someone saying they tested negative for antibodies but positive to culture! unbelievable. were the ARV's helping you?
as for how i am doing....i think the AZT was helping my brain inflammation so i wish i could have stayed on it. i am not doing horribly..things are tolerable....but i am not having the same break-through days i had on the AZT. not sure how to proceed.
everyone's support and comaraderie means so much..thank you
sue
xoxo
Sue,
Yes it was the new serology test, I got the results last week and was wondering has anyone tested positive that was on AV's. It seems as though a lot of people are coming back neg. for serology and positive for culture.
I think the AV's ( Valcyte, Immunivor ) I dropped Famvir, have helped, I'm not worse and some better, its hard to say for me what's working, or is it just running its course?
Best
Roger
Yes it was the new serology test, I got the results last week and was wondering has anyone tested positive that was on AV's. It seems as though a lot of people are coming back neg. for serology and positive for culture.
I think the AV's ( Valcyte, Immunivor ) I dropped Famvir, have helped, I'm not worse and some better, its hard to say for me what's working, or is it just running its course?
Best
Roger
heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,228
- Location
- australia (brisbane)
i think with this illness u really have to give it 3 months to work out if things are helping as its so up and down and it takes time for treatments to iron out these ups and downs. Not very scientific but i think anyone with cfs will get it.
Sue, just keep battling on, you will get there, u have had this thing awhile, its probably going to take some time to up root it.
cheers!!!
Sue, just keep battling on, you will get there, u have had this thing awhile, its probably going to take some time to up root it.
cheers!!!
probably right on the three months, I will continue on the Valcyte for a couple more months, its not been too bad. My CMV numbers dropped below the positive base line, I believe that was 0.9 so I stopped taking Famvir. I'm so up and down its hard to come to any real conclusions, today I came down with a nasty cold which really pegs the suckometer, I'm really wondering if I even remember what its like to feel well.
best,
roger
best,
roger
heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,228
- Location
- australia (brisbane)
lol, i know what u mean nventor about forgetting what feeling well is like. Now that your cmv numbers are down u may start to feel better. a person with a healthy immune system who gets mono from cmv or ebv can take a number of months to feel well/normal. If u do have any other infections(retro maybe) now your immune system should have some more juice to go after it, i think that is the idea behind treating co-infections. Im feeling better on the cycloferon and have run out of famvir for the last week or so with no problems although i think im getting a cold today as well.
cheers!!!
cheers!!!