omerbasket
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The units in both of the tests (5 months with ARVs and a year with ARVs) are pg/ml?
Antiretroviral Trial
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Daffodil
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yes...pg/mL...picograms per microlitre??
Forebearance
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To me the most interesting thing is that the ARVs did do something. They had some kind of an effect on you.
I think Dr. Shoemaker has said that increased levels of IL-6 happen in his biotoxin poisoning patients.
I so wish you could kill whatever is living in your head, Sue.
I think Dr. Shoemaker has said that increased levels of IL-6 happen in his biotoxin poisoning patients.
I so wish you could kill whatever is living in your head, Sue.
Daffodil
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thanks fore
maybe the valcyte will work....if not, maybe WPI can help me... if i can afford to go...
love
sue
maybe the valcyte will work....if not, maybe WPI can help me... if i can afford to go...love
sue
Daffodil
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feeling a little better today. noticing a little more energy still...
Maybe you can take the Valcyte with the Isentress ? That made a very good combo for me.
Daff are you protecting your CNS system from overstimulation ? Are you protecting your gut from histamine forming foods ?
Both these 2 steps can help break the cycle of cfs relapse.
Daff are you protecting your CNS system from overstimulation ? Are you protecting your gut from histamine forming foods ?
Both these 2 steps can help break the cycle of cfs relapse.
Daffodil
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hi, und....im on valcyte+isentress+azt+tenofovir. its been about 2 1/2 weeks since i added the valcyte. i'm still on the loading dose. i noticed some worsening in my brain fog but now i am not sure.
how can i protect CNS ? i will look up histamine forming foods.....
thanks
sue
how can i protect CNS ? i will look up histamine forming foods.....
thanks
sue
You need to take a mild sedative every morning to protect from the day's over stimulation. I take Klono 0.125mg. Do NOT take any stimulants, no coffee, no tea.
Once yoir CNS is overstimulated it will stimulate your immune system towards Th2 and that is when all the problem starts. Histamines in foods dont help, so make sure you take Betaine and Pancreatin daily to cut up all the proteins in foods properly to reduce food intolerances. CNS over stimulation with over stimulate most other glands/organs in the body, but it will understimulate your digestive gut.
You must must protect your CNS as well as gut during the ARVs.
I experienced some IRIS when I added the Isentress and Viread to the Valcyte, it was very mild and passing and I wasnt quite sure what it was too when it happened.
Once yoir CNS is overstimulated it will stimulate your immune system towards Th2 and that is when all the problem starts. Histamines in foods dont help, so make sure you take Betaine and Pancreatin daily to cut up all the proteins in foods properly to reduce food intolerances. CNS over stimulation with over stimulate most other glands/organs in the body, but it will understimulate your digestive gut.
You must must protect your CNS as well as gut during the ARVs.
I experienced some IRIS when I added the Isentress and Viread to the Valcyte, it was very mild and passing and I wasnt quite sure what it was too when it happened.
Daffodil
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und lol dang i cant do all that. i am already too foggy to take all my pills and supplements, some with food, some withouth food, at different times of day...its just too much. also, my doc says that it is better that i do not add more meds unless i have to....the azt and tenofovir are pretty hard on the body to metabolize i think....
i am also on cymbalta and atenolol...and also take bromazepam sometimes to sleep (but not often)
i did test negative on the recent immunobilan test and negative on a gut dysbiosis saliva test a few yrs ago..so i am hoping my gut might be OK? but i do have IBS....
i am going to have to hang in there and see if the valcyte pans out. because my cytokine profile changed so much, with many of the XMRV-related markers normalizing, i find myself having some hope, even though i probably shouldn't. guess its the human way...
thanks a lot for the advice und..i do very much value your comments!! and i am SO happy you are doing so well yet still taking time to respond here.
sue
xoxo
i am also on cymbalta and atenolol...and also take bromazepam sometimes to sleep (but not often)
i did test negative on the recent immunobilan test and negative on a gut dysbiosis saliva test a few yrs ago..so i am hoping my gut might be OK? but i do have IBS....
i am going to have to hang in there and see if the valcyte pans out. because my cytokine profile changed so much, with many of the XMRV-related markers normalizing, i find myself having some hope, even though i probably shouldn't. guess its the human way...
thanks a lot for the advice und..i do very much value your comments!! and i am SO happy you are doing so well yet still taking time to respond here.
sue
xoxo
I have pretty much come up with my own theory as to what causes cfs and am kind of using it to help myself while on the AVs. Some how it starts in the CNS, it starts with us being very easily overstimulated, this stimulation spreads and stimulates our organs and glands too much. Then they fatigue and crash. All organs except the gut, our gut becomes understimulated if our CNS is overstimulated. I can kind of make sense if u think about the fact that our brain, CNS and gut were formed from the same cells while we were still embryos.
Our gut becomes understimulated and it results in gut issues.
Immune system is over stimulated and shifts towards Th2, it starts to attack everything, organs, gland, etc, the autoimmune issues.
When this happens, reduce histamine levels in the body.
Our condition is the exact opposite of ADHD, we need a sedative every morning, not a stimulant to help with the day. Try taking the bromazepam in the day at 1/2 or 1/4 of the dose that you take to sleep at nite but instead take it in the morning when you wake up. I know it is counter intuitive but just give it a shot for awhile.
It is all about our bodies and personalities being prone to overstimulation i think.
Our gut becomes understimulated and it results in gut issues.
Immune system is over stimulated and shifts towards Th2, it starts to attack everything, organs, gland, etc, the autoimmune issues.
When this happens, reduce histamine levels in the body.
Our condition is the exact opposite of ADHD, we need a sedative every morning, not a stimulant to help with the day. Try taking the bromazepam in the day at 1/2 or 1/4 of the dose that you take to sleep at nite but instead take it in the morning when you wake up. I know it is counter intuitive but just give it a shot for awhile.
It is all about our bodies and personalities being prone to overstimulation i think.
Daffodil
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und...me2 lol
interesting article:
http://www.eatg.org/eatg/Global-HIV-News/Treatment/Anti-CMV-drug-reduces-HIV-related-inflammation
interesting article:
http://www.eatg.org/eatg/Global-HIV-News/Treatment/Anti-CMV-drug-reduces-HIV-related-inflammation
heapsreal
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That article is a good find, daff
Dr Peter Hunt, the HIV Dr in that article, did an earlier study on Valcyte sometime early last year. It was that previous study that convinced my HIV Dr to put me on Valcyte.
Daff, do you take allergy meds ? That might help you too. Whether genetic or not i think pple with CFS have got immune systems that are prone to over stimulation and often histamines can make the problem worse. The immune system misfires and attacks the body and organs mistakenly.
Again taking a mild sedative in the day to reduces the insults from the day's stresses with reduce its overstimulation.
Daff, do you take allergy meds ? That might help you too. Whether genetic or not i think pple with CFS have got immune systems that are prone to over stimulation and often histamines can make the problem worse. The immune system misfires and attacks the body and organs mistakenly.
Again taking a mild sedative in the day to reduces the insults from the day's stresses with reduce its overstimulation.
omer...i just read your message. thank you for looking so closely at my results
i suspect co-infection or ...maybe some kind of cancer....but i think more likely co-infection. very confusing indeed.
i find this all very upsetting. my brain fog mutes most of my feelings...perhaps fortunately..i would certainly be in the loony bin by now.
i suspect co-infection or ...maybe some kind of cancer....but i think more likely co-infection. very confusing indeed.
i find this all very upsetting. my brain fog mutes most of my feelings...perhaps fortunately..i would certainly be in the loony bin by now.
omerbasket
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Sue, don't get such ideas into your head. If you are concerned, ask your doctor whether you have any reason to be concerened about cancer - but why do you think it might be cacncer? Something suggests that in your results? I don't know of cancer being diagnosed by such results...
Daffodil
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hi omer. cancer always pops up in my head lol....also, an integrative doctor i showed my cytokine results to, suggested some kind of tumor test "MMP-9".
i have been looking for old information about montoya's original valcyte trial..i think the HHV6 antibodies spiked in patients after a certain amount of time on the drug...but i cannot find out when this is supposed to happen. does anyone remember?
i think i do feel worse on valcyte...my brain fog is horrible and the old familiar neck pain and cramping, along with radiation into the right shoulder and upper back....but maybe i was this bad before..i just cant be sure about anything.
i would love to have regular herpes virus antibody testing but i can't get any reliable testing here. my doctor said they recently stopped doing HHV-6 antibody titre tests here. i used to sometimes send blood on dry ice to Specialty Labs but i dont know what happened to their HHV6 titre test...it is no longer on the test menu.
thanks for reading!
sue
xoxo
i have been looking for old information about montoya's original valcyte trial..i think the HHV6 antibodies spiked in patients after a certain amount of time on the drug...but i cannot find out when this is supposed to happen. does anyone remember?
i think i do feel worse on valcyte...my brain fog is horrible and the old familiar neck pain and cramping, along with radiation into the right shoulder and upper back....but maybe i was this bad before..i just cant be sure about anything.
i would love to have regular herpes virus antibody testing but i can't get any reliable testing here. my doctor said they recently stopped doing HHV-6 antibody titre tests here. i used to sometimes send blood on dry ice to Specialty Labs but i dont know what happened to their HHV6 titre test...it is no longer on the test menu.
thanks for reading!
sue
xoxo
Sue that neck, shoulder and upper back stuff is so common in this illness, I've read that it's in these places the herpes viruses in particular like to hang out (think it was Klimas) so maybe the AV's disturb their cozy life, I don't know but if I'm feeling rough thats one place I know I'll feel it. Hope you get on an upward tack soon.
Daffodil
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hi mary. yes you are right..i also remember reading about poor sophia mirza who died of this disease....her mom sent her brain stem (i think) to drs. chaudhuri and behari and they said it was swollen "in keeping with herpes virus" infection.
i am just sometimes not too hopeful cuz the valcyte and valtrex didnt really work and i took them for 3 yrs before. but maybe it will be different this time cuz i have treated the xmrv?
thanks
sue
i am just sometimes not too hopeful cuz the valcyte and valtrex didnt really work and i took them for 3 yrs before. but maybe it will be different this time cuz i have treated the xmrv?
thanks
sue
omerbasket
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Sue, I think this is the video of Dr. Montoya that you are talking about - he says this approximately 25 minutes after the beginning of the video:
http://www.youtube.com/watch?v=Riybtt6SChU&feature=player_embedded
He says that in their first study they saw that the patinets got worse at first (although I can't see that in the graph...), but that later on they have learned that you don't HAVE to get worse at first in order to get better later. But, you can see that you might get worse at the beginning and then get better...
http://www.youtube.com/watch?v=Riybtt6SChU&feature=player_embedded
He says that in their first study they saw that the patinets got worse at first (although I can't see that in the graph...), but that later on they have learned that you don't HAVE to get worse at first in order to get better later. But, you can see that you might get worse at the beginning and then get better...