Anyone here used HIV/AIDS treatment for CFS?

sorin

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They thought that the CDC was really preparing for a real zombie apocalypse.
Ok, I do not want to continue a polemic with you, is clear that you are good in transforming serious things into ridiculous ones. Anyway, can you convince the Police that the guys (some of them teenagers) who wrote on facebook that they want to make a craft bomb were just speaking "tongue in cheek"? :)
 

sorin

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Keytruda seems to be approved as a treatment against cancer. https://www.keytruda.com/ It is used also for Hodgkin lymphoma and I would not be surprised to be effective also against CFS. Anyone here tried that or intend to try it in the near future?
 

halcyon

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Keytruda seems to be approved as a treatment against cancer. https://www.keytruda.com/ It is used also for Hodgkin lymphoma and I would not be surprised to be effective also against CFS. Anyone here tried that or intend to try it in the near future?
I think there is a good chance anti-PD1 mAbs could have an effect in ME. Several studies have shown that we are in a state of T cell exhaustion which is partially mediated by PD-1. These drugs can have nasty consequences though as they can cause sudden serious autoimmune reactions.
 

heapsreal

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I think there is a good chance anti-PD1 mAbs could have an effect in ME. Several studies have shown that we are in a state of T cell exhaustion which is partially mediated by PD-1. These drugs can have nasty consequences though as they can cause sudden serious autoimmune reactions.
T cells exhaustion probably from fighting chronic infections.

Need a way to increase bone marrow production of blood cells. Off the top of my head sex hormones like testosterone can do this, cortisol can to a certain degree. High doses of injectable b12 did help increase my neutrophil numbers some and i think i used zinc with it.

Probably other ways but also need to treat chronic infections but with testing the way it is that can make it more of a guess as to what infections areactive. Antibody tests for infections would be unreliable with low bone marrow production?? I guess abnormal lymphocytes and neutrophils are a guide to ongoing infections.
 

heapsreal

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@heapsreal

speaking of viral titers, have you ever tested for enteroviruses? I'm curious given your positive response to ARVs
No. Apparently not available here and my dr said bloid test was unreliable. Biopsy bezt way to diagnose it. Also no gi issues which are common in EV. I recently started an arv with tenofovir and lamivudine, lamivudine chia uses for EV. Too early to notice any difference from it but ive also improved alot with tenofovir just hoping to squeeze abit more improvement oit with lamivudine added.
 
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No. Apparently not available here and my dr said bloid test was unreliable. Biopsy bezt way to diagnose it. Also no gi issues which are common in EV. I recently started an arv with tenofovir and lamivudine, lamivudine chia uses for EV. Too early to notice any difference from it but ive also improved alot with tenofovir just hoping to squeeze abit more improvement oit with lamivudine added.
why not Raltegravir ??? as i said before Raltegravir have show to have action blocking the protein that many of the herpes viruses need to replicate, but more imprtanly it's also a retroviral inhibitor..
im gona start on truvada that have two nucleotides Teno-emt+ ill take insetres( raltegravir)
one thing very importan that probably many people ignored back them those days of XMRV when lots of people were doing ARVs, them they had to come off couse they were getting worth do to the immune reconstitution , this happen on AIDS its not new, people sick for a very long time or severly ill have pathogens , viruses , intracellularbsctetis, Gut bad bacteria , some may even have candida, can you imagine on top of the inflamation that we already have , the extra amount of inflamation that our immune system will do when Retroviral load goes down them immune system kicks in trying to clean all this infraction ..
like in AIDS its very important make sure to treat pathogens, viruses bacteria before starting arvs ..
thats is like when a car have a smal accident you can repair just the outside damage part, but when a car has a really bad accident frame damage etc, if you fix the outside but don't fix the inside them the car will never run find every day past the car will get worth..
we all have ignored so many facts im some time fascinated by certein peoples posts and arguments some times..
We dont know the cure, we don't have an FDA or world wide treatment, we don't know everything yet.
But we do know enough we have from experinaces from comun sense from decades of people suffering, that immune system is one of the big problems we have, we know that gut bad bacteria, candida etc are factors( all this is also associated to defective deficiency immune system, we know herpes viruses can trigger or reactivare causing symtoms, we like in hiv/aids that herpes viruses like cmv, hhv6 hsv-1 etc can accelerate help hiv retrovirus o replicate and increase viral load and enter other type of cells, we know we have something(( what is that something that can not be defined yet????) that keep our cells scare in hibernation as naviaux said on his paper,,, we know we know we know ( BUT WE DONT KNOW NOTHING) why we don't know nothing ?? becouse we don't have a paper a science publication that say exactly what we have and what to do( we will not have that becouse the ones in charge to do that have been pushing their agenda and propaganda of me/cfs phsycological , come guys we have enough evidence to realize we were not born like this, this is epidemic this is an infectious disease, that have apear in many places as outbrakes, that many families have become affected, if it was birth defect no reason why a husband and wife of diferent genes two completely diferent persons will have it, we know we have gene mutations look how many things!!!!
we have to go on, and everything pin poin to an infectious disease retroviruses change your DNA that's what they do best they mutate your genes...
wake up wake up..
 
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@Knockknock
Raltegravir is too expensive or i would try it.
lamiduvine its also a nucleotide arv, its not often mention to be use in me/cfs but who knows if you may find your answeres there..
my biggest fear are the side effects especially long term effects.. of the arvs ..even though i strongly believe if they are use at the right moment after calming down co infections to prevent xtreme extra inflamation do to immune reconstitution they will work better.. just as it happens on AIDS..
many things would of work better if use correctly at the right timing, even stem cells may have a much longer and better results if they were accompanied by a potent antiviral or arvs , just as it happens when there is an organ transplant or bone marrow transplant in immunosupressed individuals they use valcyte or gancyclovir to keep viruses CMV etc under control..,
 

ScottTriGuy

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@Knockknock
Raltegravir is too expensive or i would try it.

If you were HIV-positive, the cost of Raltegravir would be covered by the govt?

With some HIV meds helping so many ME folks - and since the accessibility to these meds is very limited, maybe we need to launch a provocative awareness campaign to increase access:

Got ME?
Get HIV.
 
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If you were HIV-positive, the cost of Raltegravir would be covered by the govt?

With some HIV meds helping so many ME folks - and since the accessibility to these meds is very limited, maybe we need to launch a provocative awareness campaign to increase access:

Got ME?
Get HIV.
we do , but i made a thread about doing a trial a large one with ARVS most people didn't care about ..
a lot of people here at Pr are against that , info respect their opinion , it syllable don't understand why when this illness scream infectious disease, scream Retroviral infection from all angles..
retroviruses just like in AIDS change your DNA mutate your cells , transform the body in a robot , that's what we see in ME/Cfs..a total body. change full of disfuntion that's why it takes more than just antivirals or stem cells or supplements its multisystemic many things need to be adddreased..
if you get quick to some wity knowledge you can slow down damage and have a better prognosis ...
most people don't get that to quick until
they are already to ill..
 

JES

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If you were HIV-positive, the cost of Raltegravir would be covered by the govt?

With some HIV meds helping so many ME folks - and since the accessibility to these meds is very limited, maybe we need to launch a provocative awareness campaign to increase access:

Got ME?
Get HIV.
I think the number of people on this forum that have seen benefits from HIV meds are in the single numbers, so we can't really make much of a conclusion from that. Many of those HIV meds are also antiviral against herpesviruses, and we know antiherpesvirals help some CFS/ME patients, as Dr. Lerner has actually shown in his published studies, whereas any retrovirus involvement is still speculation at this point.
 
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I think the number of people on this forum that have seen benefits from HIV meds are in the single numbers, so we can't really make much of a conclusion from that. Many of those HIV meds are also antiviral against herpesviruses, and we know antiherpesvirals help some CFS/ME patients, as Dr. Lerner has actually shown in his published studies, whereas any retrovirus involvement is still speculation at this point.
i think the numbers its larger than we can account for it here.
but since it always been a tabu a bad word the use of arvs many people refrain them self from saying it, especially after the xmrv dismissal as a contaminant.
mikovits it's doing conferences all over united states , international forums, explaining how the xmrv was a fraud, it wasn't really xmrv and its an mlv related viruse, she explain in details how this retroviruse do to our body inducing neuro disease like me/cfs and cancer.
she is getting a lot of attention, ofcourse not from NIH or CDC..
back to subgect, like in AIDS co infections , pathogens. need to be addressed before arvs, since immune reconstitution will add more inflamation this will
make you feel worth,many had to come off it.
same happen to stem cells they work but its not the only issues of some one with Me/ and i'm assuming like an immunosupressed individual bone marrow transplant or organ transplants herpes viruses can infect them if the correct antivirals are not administre.
its a complex multisytemic disease as we know full of disfuntions immunosupresion many things need to addressed for protocols to work better .
 
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heapsreal

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Me/ and i'm assuming like i'm immunosupressed individual bone marrow transplant or organ transplants herpes viruses can infect them if the correct antivirals are not administre.
its a complex multisytemic disease as we know full of disfuntions immunosupresion many things need to addressed for protocols to work better .
Agree. I dont think tenofovir directly works well on some herpes viruses as i had a severe shingles episode and needed avs/famvir. Theres some type of infection going on and why we see many coinfections.

Dr Younger recently mentioned a third of cfsers seem to have some sort of ongoing infection. Another third autoimmune related and the other third the rest. So if arvs help the third of the cfs population, past research and new research should head in this direction along with studying autoimmune and unknown cfsers.
 
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Agree. I dont think tenofovir directly works well on some herpes viruses as i had a severe shingles episode and needed avs/famvir. Theres some type of infection going on and why we see many coinfections.

Dr Younger recently mentioned a third of cfsers seem to have some sort of ongoing infection. Another third autoimmune related and the other third the rest. So if arvs help the third of the cfs population, past research and new research should head in this direction along with studying autoimmune and unknown cfsers.
im not sure how much it can help some sever ill, i hope it does for all of those in that stage, deserve a life deserve an answere, but i guaranty you that a person with mild to mederate sick get the right treatment just like in AIDS addressing the infections first, them when infections are under control start on the arvs, we will get much better results.
just think about it, you have active herpes, you have mycoplasmas . you have bad bacteria in hot or candida in the blood that pass thru organs , them out of the sudden you wake up your immune system & start fighting all this pathogens' think the inflamation that this person will endure will have !!!!!!!
same thing happen with the stem cells, results have been from moderate to spectacular, but didn't last long?? why do you think this happen???
im assuming stem cells its one of the principal issues we have, the help repair tissue , they revitalize your body reglulate your immune system.. but like every other cell in the body can get infected and depleted by pathogens either virus or retrovirus, that's what i'm seen here..
Im not in any way good like i used to be before onset, neither is my patner,we still mild to moderate probably ill be in a 6 kenner scale he is 7-8 in btwn, even though there is not a validated cause or treatment for cfs i have to be gratefully that all this decades have help us understand more and more the disease regardless of not having funding or real research, i respect those who only go by scientific publication and official research from ( who?? NIH?? that doesn't exist ) but to me all this decades of patients experiance , brace doctors taking cfs in their owne hand treating patients with what they have it's very valuable to me,
I was going to start my medical career when my family decided to come to united states, i wasn't able to go thru with it, im not a doctor, but i don't need to be one to realize that this illness it come from an infectious disease agent, transmisible and epidemic.. its comun sense, you don't need to be a doctor or a rocket scientist to see it, even though i respect those who doesn't want to see it that way and have their very owned reasons to do so.
 
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If you were HIV-positive, the cost of Raltegravir would be covered by the govt?

With some HIV meds helping so many ME folks - and since the accessibility to these meds is very limited, maybe we need to launch a provocative awareness campaign to increase access:

Got ME?
Get HIV.
absolutely !!!!
we need awareness...
with all do respect i don't care what anybody say.
me/cfs it come from an infectious ethyology, Me/cfs is an infectious disease.
its multisytemic with out a doubt, most of Me suffers have many pathways disrupted but this is the result of a single viruse causing all this body impairments, if we would of have a healthy methyliation , a healthy RNASE L antiviral etc.. none of this herpes viruses or eteroviruses would of being a problem .
we all know on healthy population this viruses are nearly harmless
 
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If you were HIV-positive, the cost of Raltegravir would be covered by the govt?

With some HIV meds helping so many ME folks - and since the accessibility to these meds is very limited, maybe we need to launch a provocative awareness campaign to increase access:

Got ME?
Get HIV.
We need to avócate for that!!!