*GG*
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I remember some big hubub about this drug, don't recall exactly what it was. I would research it, if I was taking it.
GG
GG
Antiretroviral Trial
- Thread starter Daffodil
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heapsreal
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viox was they drug they took off the market for heart problems, its a shame as it seem to work alot better the celebrex. But i find naprogesic/naprosyn probably the best anti-inflammatory, toradol is probably the strongest but u cant take it for more then 5 days as it stress the liver too much but good for a one of like an exacerbation of lower back pain etc.
Daffodil
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so ive been on AZT at 300 BID for a few days now and i feel so much better in my brain. but, of course, the pain is really starting in my chest again. i will have CT angiography next week sometime.
i'm just so defeated. i have increased and reduced AZT so many times now, that i will be resistant soon and won't even be able to have these few days of relief.
if XMRV causes microvascular disease, i wonder if they can even see it in non-invasive testing.
things seem so hopeless when i listen to the CFS presentations. it seems like they know next to nothing about this virus and keep saying how much work there is to do. it feels like a cruel joke..the way they try to give hope to us late stage patients, when they know it will be almsot 10 yrs before we even have a semi-affective treatment.
only mikovits seems acutely aware of our suffering. the others just seem excited to study something new. i know i am being unreasonable..it isnt their fault.. just so tired of being so miserable. all suffering is supposed to come to an end sometime....why does this seem to go on forever?
i'm just so defeated. i have increased and reduced AZT so many times now, that i will be resistant soon and won't even be able to have these few days of relief.
if XMRV causes microvascular disease, i wonder if they can even see it in non-invasive testing.
things seem so hopeless when i listen to the CFS presentations. it seems like they know next to nothing about this virus and keep saying how much work there is to do. it feels like a cruel joke..the way they try to give hope to us late stage patients, when they know it will be almsot 10 yrs before we even have a semi-affective treatment.
only mikovits seems acutely aware of our suffering. the others just seem excited to study something new. i know i am being unreasonable..it isnt their fault.. just so tired of being so miserable. all suffering is supposed to come to an end sometime....why does this seem to go on forever?
Sue -- have you had your vitamin D levels checked lately?
Vitamin D deficiency is very closely associated with all types of inflammation.
Just my two cents, but I wouldn't assume that a virus or retrovirus or any sort of bug is causing your inflammation. It could be so many different things...and low vitamin D may -- may -- be one of the main causes. There are quite a few studies online to back this up.
Hope this helps.
Vitamin D deficiency is very closely associated with all types of inflammation.
Just my two cents, but I wouldn't assume that a virus or retrovirus or any sort of bug is causing your inflammation. It could be so many different things...and low vitamin D may -- may -- be one of the main causes. There are quite a few studies online to back this up.
Hope this helps.
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Hi Daffodil,
I still think you should look into MSM before you concider taking more chemical crap. There where several studies done on this compound, all with good results. A good place to start reading about it:
http://morgellonspgpr.wordpress.com/2010/02/08/msm-more-information/
I got my heartrate from 120 bpm to around 90 with this, which makes a hell of a difference.
Still it is your body, so you decide what to do with it, just trying to help.
Kind regards,
I still think you should look into MSM before you concider taking more chemical crap. There where several studies done on this compound, all with good results. A good place to start reading about it:
http://morgellonspgpr.wordpress.com/2010/02/08/msm-more-information/
I got my heartrate from 120 bpm to around 90 with this, which makes a hell of a difference.
Still it is your body, so you decide what to do with it, just trying to help.
Kind regards,
heapsreal
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immunovir or cycloferon to help raise your natural interferon levels which have antiviral properties, improve natural killer cell function and anti-inflammatory effects against viral infections. cycloferon is used in HIV with antiretro drugs with success. ARV's might lower viral load but dont help strengthen the immune system and also the chronic stress of infections for so many years does cause adrenal fatigue ie lowers cortisol and dhea levels, low cortisol causes immune dysfunction just as bad as high cortisol levels can. Its all a viscious circle but u have to attack it from every angle you can.
good luck sue,
keep fighting,
cheers!!!
good luck sue,
keep fighting,
cheers!!!
Daffodil
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heap thanks. i am thinking of getting my adrenals checked cuz of the severe fatigue. i checked it out and AZT can cause some sort of cushings syndrome.
so i have been on the higher dose (300 BID) now for a 5 days or so. what is interesting is, it started to work again...i could feel the same headache in my brain and a bit of clearing of the fog....and accompanied by that, was shooting chest pain. it started exactly at the same time as when i felt the improvement. i think it is definitely related to the infection clearing my CNS.
but some bad news is, the improvement and the chest pain have stopped. the fog is all back and there is absolutely no chest pain. this time around, the AZT started working, and then stopped working. i suppose it is possible that the regression is temporary because i havent been on the higher dose that long this time around, but....
its been a year now that i have been stopping, increasing, reducing AZT....could i have developed resistant strains by now? seems like a sure formula to become resistant. that would really be bad cuz i was gonna get on some heart meds soon so i could take the drug at the required dose. but i really feel like its not going to work this time. but maybe its too soon to tell..ugh
sue
so i have been on the higher dose (300 BID) now for a 5 days or so. what is interesting is, it started to work again...i could feel the same headache in my brain and a bit of clearing of the fog....and accompanied by that, was shooting chest pain. it started exactly at the same time as when i felt the improvement. i think it is definitely related to the infection clearing my CNS.
but some bad news is, the improvement and the chest pain have stopped. the fog is all back and there is absolutely no chest pain. this time around, the AZT started working, and then stopped working. i suppose it is possible that the regression is temporary because i havent been on the higher dose that long this time around, but....
its been a year now that i have been stopping, increasing, reducing AZT....could i have developed resistant strains by now? seems like a sure formula to become resistant. that would really be bad cuz i was gonna get on some heart meds soon so i could take the drug at the required dose. but i really feel like its not going to work this time. but maybe its too soon to tell..ugh
sue
heapsreal
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sue did u watch the recent montoya video, he mentions some have low level ebv and hhv6 titres that they would normally not treat, but i cant quite recall but there was some other type of testing for hhv6 thats not normally done and they respond to valcyte, i wonder if this maybe part of your case as u did have some response to valcyte and lerner does mention these herpes viruses damage the heart. All i can suggest is to watch the video again and maybe contact montoya or lerner again as maybe u need a combo of valcyte or valtrex and antiretro drugs. I know i have mentioned this before, but for any potential liver toxicity NAC maybe the go as i have used it as a preventative for liver damage after taking av's but my father inlaw was having liver problems with high liver enzymes and i told him to use NAC and it has brought his enzymes down to normal range, he and I just use NOW brand NAC 600mg twice a day. IM not sure of the toxicity of combining these drugs but they are used in HIV ie antiretro's and valcyte for CMV. Hopefully i have been of some help.
cheers!!!
cheers!!!
omerbasket
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If I'm not mistaken (and you should double-check this), he talked about the fact that some people have low titer of antibodies to these viruses - and therefore, in a serology test they come back negative (or positive, but with what seems to be a latent virus with no current clinical effect), but when you check them with PCR - which checks for the virus itself, instead of antibodies - you find that they have high levels of the virus. As far as I know, PCR is not being routinely done in clinical laboratories.
Daffodil
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AZT at full dose still not having affect...no heart problems and no improvement! what happened??? it has to be resistance
some days are still tolerable, some are not.
some days are still tolerable, some are not.
Daffodil
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bad day today. still no affect from increasing the AZT. i'm tell you..the last time i took this dose until i was sure my heart was just about to give out, and my brain was seriously clearing! it was incredible. i got a glimpse of how i was 19 yrs ago! like night and day!
anyway, no one can tell me CFS is not caused by a retrovirus now.
anyway, no one can tell me CFS is not caused by a retrovirus now.
omerbasket
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Sue, are you also infected with EBV? Or with other viruses that you know of?
Due to the paper about NF-kappa-B helping XMRV to replicated, and since EBV, as far as I understood it, induces it's activity - if you have EBV, perhaps it would help you to take antivirals against it (lowering its levels, therefore lowering the levels of NF-kappa-B, therefore making it harder for XMRV to replicate). Perhaps even if you have other infections it's worth considering treating them.
I mean, perhaps when you took antivirals they didn't really help, or helped a little (did they help a little?), and when you are on antiretrovirals they too are helping just a little - but perhaps they would work in a synergistic way, and by different routes make XMRV replicate less.
Does anyone know if the antiretrovirals that Sue is taking are also working against EBV and other viruses that Sue might have?
Also - is there a way to check levels of TNF-alpha? Because it was also shown to induce XMRV replication in that study - and if it is raised I think it is totally treatable, with anti-TNF alpha drugs - although they too have their side effects.
Due to the paper about NF-kappa-B helping XMRV to replicated, and since EBV, as far as I understood it, induces it's activity - if you have EBV, perhaps it would help you to take antivirals against it (lowering its levels, therefore lowering the levels of NF-kappa-B, therefore making it harder for XMRV to replicate). Perhaps even if you have other infections it's worth considering treating them.
I mean, perhaps when you took antivirals they didn't really help, or helped a little (did they help a little?), and when you are on antiretrovirals they too are helping just a little - but perhaps they would work in a synergistic way, and by different routes make XMRV replicate less.
Does anyone know if the antiretrovirals that Sue is taking are also working against EBV and other viruses that Sue might have?
Also - is there a way to check levels of TNF-alpha? Because it was also shown to induce XMRV replication in that study - and if it is raised I think it is totally treatable, with anti-TNF alpha drugs - although they too have their side effects.
Daffodil
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hi omer! i heard raltegravir also works on the herpes viruses...will write more when able. thanks for the support
sue
sue
Daffodil
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omer..many times i have thought about adding valcyte to the ARV regimen...but i dont think my doc will allow it..and also, it scares me. my herpes titres were never that high...but i should have my HHV6 retested. the problem is, i would have to send my blood to california on dry ice to do it properly. i can get it tested here but i am not sure the tests are as good. i'll ask anyway. thanks for suggesting it. it kind of makes sense that i might have another infection getting in the way...even a couple of researchers brought that up...but i just never really had a big active herpes viral infection.
my gut feeling is that the retrovirus, which ever one it is (or more than one) is just very deep in my brain tissue and might now be resistant to AZT....but maybe that makes no sense either. i just dont know. ugh this fog is horrible today.
having spent almost 20 yrs basically locked in a coffin, i'm starting to get pretty pissed off.
maybe the ARV's will just take a few years to work for some people? is that even possible?
my gut feeling is that the retrovirus, which ever one it is (or more than one) is just very deep in my brain tissue and might now be resistant to AZT....but maybe that makes no sense either. i just dont know. ugh this fog is horrible today.
having spent almost 20 yrs basically locked in a coffin, i'm starting to get pretty pissed off.
maybe the ARV's will just take a few years to work for some people? is that even possible?
Sue I just reread Lerner's theory on CFS. Even if EBV and HHV6 titre lvls arent that high, he would still treat the patients with Valcyte/Valtrex. His theory is about incomplete virus particles floating around in our system and causing havoc. Because it is not a true virus particle, commercials tests will not be able to detect it and it makes EBV and HHV6 titre levels inadequate.
Have you tried adding Hawthorn berries as a supplement for your heart. I use it to help boost cardio workouts when I run. It works.
I am also taking clay in hopes that its detox effects will draw out virus particles from my body.
Have you tried adding Hawthorn berries as a supplement for your heart. I use it to help boost cardio workouts when I run. It works.
I am also taking clay in hopes that its detox effects will draw out virus particles from my body.
omerbasket
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Hi Sue,
You're questions raise reasonable options. However, I have no idea what the answers are...
Perhaps it would be worthwhile trying antivirals even if your herpes viruses titers doesn't seem very high? I don't know, I'm just raising the possibility.
You're questions raise reasonable options. However, I have no idea what the answers are...
Perhaps it would be worthwhile trying antivirals even if your herpes viruses titers doesn't seem very high? I don't know, I'm just raising the possibility.
Daffodil
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hi omer. part of me does want to add valcyte....i will ask doc. this will just kill my liver..the enzymes are a little raised already...plus i think RAL treats herpes viruses too?
i overdid it on wednesday. i had to go out and it was cold and very snowy. i had to visit my sis in hospital and run errands and ended up doing too much. the vast majority of days i do not leave the house at all.
i have been very foggy and inflammed since that day. am hoping it is a storm before the calm, ugh
someone recommended Protandim to me for possibly raising glutathione....i cant stomach immunocal/immovir..so i ordered it.
sue
xoxo
i overdid it on wednesday. i had to go out and it was cold and very snowy. i had to visit my sis in hospital and run errands and ended up doing too much. the vast majority of days i do not leave the house at all.
i have been very foggy and inflammed since that day. am hoping it is a storm before the calm, ugh
someone recommended Protandim to me for possibly raising glutathione....i cant stomach immunocal/immovir..so i ordered it.
sue
xoxo
Charles555nc
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Just started raltegravir and truvada, feeling extremely nausous and having some nerve pain.
Any advice/insight?
Any advice/insight?
RAL treats herpes but only on the integrase site of the virus. This site is very prone to mutation so doctors never give ARV for just this site alone. The virus will mutate away too quickly from the drug.
Take a liver supplement if u take Valcyte, like milk thistle or schisandra. Consider Shark Liver Oil and formyl folate too.
Take a liver supplement if u take Valcyte, like milk thistle or schisandra. Consider Shark Liver Oil and formyl folate too.
Charles555nc
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Still taking antiretroviral meds, having alot of pain and nausea with truvada, Isentress doesnt seem too too bad considering. I know its werid, but when my eyes are red my symptoms are less, but when they are clear I have my worse symptoms. Its like when my body is fighting the infection I get red eyes, but when its majorly supressed they look normal. My eyes have flashed red starting on these meds, idk what it means.