Antiretroviral Trial

[jeffrez]

People have been hassling her for months about this. You are beating a dead horse. Give it a rest already!

Well if her doctor thinks she should be on them, then who am I to say? But when someone says they are getting a lot worse I think they might do well to re-evaluate, especially when they haven't even tested positive for what the drugs are designed to treat. Like I said, just my opinion. There is no rule here against someone giving their opinion, is there?

 

[Martlet]

worse of all, i am no longer feeling a lot better, as i was for a few days last week. my brain feels very inflamed again and things are only a little better than before the drugs.... i am beginning to wonder if i even have this virus and have no idea what will become of me if i do not.

I really feel for you, Sue. I know this feeling you describe. I was like that on the florinef trial, really, really hoping. I have no words of wisdom but just want to give you a

 

[omerbasket]

Well if her doctor thinks she should be on them, then who am I to say? But when someone says they are getting a lot worse I think they might do well to re-evaluate, especially when they haven't even tested positive for what the drugs are designed to treat. Like I said, just my opinion. There is no rule here against someone giving their opinion, is there?

She didn't say she is getting worse than she was before taking antiretrovirals. In fact, she experienced 25% of improvment quickly after starting to take AZT. She got worse than what she felt for a few days - when she felt better, on the antiretrovirals, and now she feels worse than she felt on these days - not worse than before taking antiretrovirals.

Besides all of that: Sue knows that these drugs are somewhat dangarous; And she knows she hasn't been tested positive for XMRV; Yet she decided to take these drugs because she is in a desperate situation. It's possible that you would have done another thing, and it's possible that you would have done exactly the same as her. But either way, it is not your bussiness. If you would have said something that is not clear that Sue knows - that's one thing. But you say things that she knows and try to tell pressure her to do what you think you would have done.

 

[Daffodil]

thanks omer, CFS, everyone.

3rd day on tenofovir in addition to the other drugs. last 2 days have been hell. not sure about today..looks like similar but not quite as bad.

i think i should have waited 5 months to get all those expensive tests...

strange.....2 weeks ago i was 100% sure this was working and now i am not sure at all. i am probably a tougher case because i have so much neuro involvement and was sick so long....but from what i understand, you arent supposed to go back down once you start doing a little better. i do not know what is happening.

i wont have RNase L and elatase results until mon or tues but i expect no change there.

i made a comment to my doc that tenofovir hardly gets into the CNS but he said if it reduces viral load elsewhere, it could still help brain.

sometimes i wonder if i have XMRV but i dont know what else i could have. very scared as usual. could anyone be in a bigger mess!?

sue
xoxo

 

[jeffrez]

She didn't say she is getting worse than she was before taking antiretrovirals. In fact, she experienced 25% of improvment quickly after starting to take AZT. She got worse than what she felt for a few days - when she felt better, on the antiretrovirals, and now she feels worse than she felt on these days - not worse than before taking antiretrovirals.

Besides all of that: Sue knows that these drugs are somewhat dangarous; And she knows she hasn't been tested positive for XMRV; Yet she decided to take these drugs because she is in a desperate situation. It's possible that you would have done another thing, and it's possible that you would have done exactly the same as her. But either way, it is not your bussiness. If you would have said something that is not clear that Sue knows - that's one thing. But you say things that she knows and try to tell pressure her to do what you think you would have done.

Where did I say she was worse than before taking the antivirals? You seem to have misread something. I never said that. I also never pressured anyone to do anything, I only stated my opinion. You apparently misread something there, too - or projected something. In fact, what I see is a lot of "peer pressure" from all of you for her to actually take the drugs, not the other way around.

She did say after the initial response she then was essentially no better than before taking them. Having an apparently beneficial response to something for a few days and then going back to baseline is a very common pattern of the placebo response.

Taking antiretrovirals for XMRV when you know you have XMRV is one thing, and even there we don't know if it will work or give any therapeutic response. Taking anti-retrovirals, RTIs, etc. when you don't even know if you have XMRV is completely irresponsible. Whatever doctor is doing that should have his or her license revoked.

Sorry to have to tell you, but when someone posts something on a public message board, then it is my business. If she doesn't want people to give their opinions, then she shouldn't post something publicly, but instead should PM all of you privately. And implying that someone shouldn't give their opinion because it's different than yours is ridiculous. Your opinion is different from mine, so perhaps it's you who should mind your own business.

 

[energyoverload]

Isoprinosine?

cfs since,

thanks for giving that info, very interesting. i seem to remember somewhere someone said that you may be able to create immunovir by combining DMAE with something else? anyone? also does anyone hear see a continued improvement from taking Isoprinosine? Is it worth taking??? I think the liver supps are defo good to take especially if you are on ARVs...

jake

 

[judderwocky]

don't let anything i say influence you

i'm not saying this to influence people one way or the other... this is just me thinking outloud....

every supplement i've taken thats made me feel better, has made me feel worse for a while... i have often found it odd that you almost have to be well enough to take the stuff thats going to make you feel better...

i guess i have a little trepidation wondering that even if these antiretrovirals work... that taking them is going to make me re experience the first two months of my illness all over again.....



also... taking all three at once... suppose that my premise (although lacking any real scientfific credibility) is accurate... would it be possible then that if each drug was individually associated with a period of worsening, followed by improvement, that one coudl experience these independently... perhaps the drugs take different lengths of time to be effective... and one then experiences a dip each time the next one kicks in....

so you take them all, the first one kicks in you get worse and then better, think its working, and then another one starts affecting your system more strongly... etc... taking more than two it would become increasingly difficult to tell which effects were which and they might blur to just create a really "confusing" set of symptoms....


Another thing... when you said you started feeling better... did you become more active? this would stimulate a lot of different hormones in your body... perhaps some that had fallen below baseline... if the viral load decreased, you became more active, and then you started producing a larger volume of hormones, this could increase the viral replication rate until your body can adjust to the new levels...

retroviruses are weird in that a lot of our "growth and repair" functions become virus making functions as well.

 

[omerbasket]

Where did I say she was worse than before taking the antivirals? You seem to have misread something. I never said that. I also never pressured anyone to do anything, I only stated my opinion. You apparently misread something there, too - or projected something. In fact, what I see is a lot of "peer pressure" from all of you for her to actually take the drugs, not the other way around.

She did say after the initial response she then was essentially no better than before taking them. Having an apparently beneficial response to something for a few days and then going back to baseline is a very common pattern of the placebo response.

Taking antiretrovirals for XMRV when you know you have XMRV is one thing, and even there we don't know if it will work or give any therapeutic response. Taking anti-retrovirals, RTIs, etc. when you don't even know if you have XMRV is completely irresponsible. Whatever doctor is doing that should have his or her license revoked.

Sorry to have to tell you, but when someone posts something on a public message board, then it is my business. If she doesn't want people to give their opinions, then she shouldn't post something publicly, but instead should PM all of you privately. And implying that someone shouldn't give their opinion because it's different than yours is ridiculous. Your opinion is different from mine, so perhaps it's you who should mind your own business.

I didn't say you shouldn't state your opinion because it's different. When Sue first considered taking antiretrovirals, most of the members here tried to persuade her not to do that. There is a big difference, in the tone of the words, between saying "Sue, these drugs are dangerous" and saying "Taking anti-retrovirals [...] when you don't even know if you have XMRV is completely irrespinsible. Whatever doctor is doing that should have his or her license revoked". Who the hell are you to decide for a person what is responsible for him and what isn't? Would you suffer his symptoms instead of him and let him live healthy? You might not want to take the chance here, but Sue does want to do that and it is not irresponsible for a patient who have no other solutions to try a somewhat dangerous drug which he believes can help him. And also, there is nothing irresponsible in a doctor that understands that this patient is in a very difficult situation, and that the patient knows the dangour and still wants to take the risk, who prescribes anti-retrovirals for a patient who haven't even been proven to be XMRV positive. Dr. Nancy Klimas is a very respected doctor who treats ME/CFS patients and these patients appreciate her, and she is also a member in the CFSAC. She said that she prescribed for some patients antiretrovirals EVEN BEFORE THE DISCOVERY OF THE CONNECTION BETWEEN ME/CFS AND XMRV, and that these patietns improved on these drugs. Desperate situation requires desperate measures. It's good that there are still doctors out there who are willing to risk their career in order to try to help a ME/CFS patietn who desperatley needs that help, knowing that even some people with ME/CFS might than tell them that "their license should be revoked".

She did say after the initial response she then was essentially no better than before taking them

and things are only a little better than before the drugs.

So she does feel better on the drugs, even if just a little better. Yes, it might be a placebo effect, and it might not be one. Anyway, I think we cannot currently know, especially since she is not enough time on the drugs. But these little details don't change the big one: You have no right (even if it's not in the forum rules) to critisize her - and the tone of your words is a tone of critisizm. You have no such right.

 

[jeffrez]

I didn't say you shouldn't state your opinion because it's different. When Sue first considered taking antiretrovirals, most of the members here tried to persuade her not to do that. There is a big difference, in the tone of the words, between saying "Sue, these drugs are dangerous" and saying "Taking anti-retrovirals [...] when you don't even know if you have XMRV is completely irrespinsible. Whatever doctor is doing that should have his or her license revoked". Who the hell are you to decide for a person what is responsible for him and what isn't?

Medical standards say it's irresponsible. She doesn't even know she has a retrovirus.

Would you suffer his symptoms instead of him and let him live healthy? You might not want to take the chance here, but Sue does want to do that and it is not irresponsible for a patient who have no other solutions to try a somewhat dangerous drug which he believes can help him. And also, there is nothing irresponsible in a doctor that understands that this patient is in a very difficult situation, and that the patient knows the dangour and still wants to take the risk, who prescribes anti-retrovirals for a patient who haven't even been proven to be XMRV positive. Dr. Nancy Klimas is a very respected doctor who treats ME/CFS patients and these patients appreciate her, and she is also a member in the CFSAC. She said that she prescribed for some patients antiretrovirals EVEN BEFORE THE DISCOVERY OF THE CONNECTION BETWEEN ME/CFS AND XMRV, and that these patietns improved on these drugs. Desperate situation requires desperate measures. It's good that there are still doctors out there who are willing to risk their career in order to try to help a ME/CFS patietn who desperatley needs that help, knowing that even some people with ME/CFS might than tell them that "their license should be revoked".

The first rule of medicine is to do no harm. Taking an antiretroviral when you don't even know you have a retrovirus breaks that rule pretty clearly.

XMRV is hard enough to detect. Who is to say that now that the field is contaminated with antiretrovirals that she might test false negative? So everything about this approach is irresponsible. It doesn't take me to say it is - it's the very definition of irresponsible.

So she does feel better on the drugs, even if just a little better. Yes, it might be a placebo effect, and it might not be one. Anyway, I think we cannot currently know, especially since she is not enough time on the drugs. But these little details don't change the big one: You have no right (even if it's not in the forum rules) to critisize her - and the tone of your words is a tone of critisizm. You have no such right.

On the contrary, I pretty much have the "right" to say whatever I want, just like everyone else does. I didn't criticize her, I criticized the irresponsible doctor who is prescribing these drugs who apparently hasn't even tested her for XMRV, let alone tried other safer options first. Imo, that doctor should have his or her license revoked, or at least be reprimanded.

As for "tone," it's actually your tone that is very hostile and critical, whereas my "tone" has always been very calm, reasoned and measured. You should put a check on that, especially when it's the very thing for which you are wrongly criticizing other people.

 

[Rrrr]

no, mr kite. it is indeed *your* tone that is hard to take. that is why so many people comment to you about it.

i love your insights and intelligence, but yr tone can be quite harsh.

 

[Daffodil]

i dont understand how i got so lucky as to find a doctor to let me try these drugs, even without a positive test...and in canada no less. and he isnt a fly by night doctor either...he is very prominent. it is like some sort of miracle. i have no explanation for it...i just thank God it happened. at the very least, it may have bought me some time because it has given me some hope.

dont bother telling me its stupid of me to do this, i have literally nothing to lose. i am in the depths of hell 24/7..thats the stage of disease i am in.

so today feels similar to the first few days on the previous ARV's...a lot of inflammation...especially in head....and some joint pain. some GI issues too. just a lot of inflammation.

some guy named prometheus keeps pasting info from here onto ERV's forum and criticising me. :-/

sue

 

[boomer]

I don't really have a problem with Mr. Kite's tone. I can feel these comments are coming from a place of kindness in fact and this forum should express every view. This is a democratic board and everyone can weigh and make their own decisions. I have heard comments on the board that are mean and those are the ones to be concerned about.

 

[Rrrr]

i don't know what ERV's forum is, but did you ask prometheus to stop. obvious, i know, but was that step already taken, and he continues to do the cross posting? contacting the moderators of that forum could be the next step. what is ERV?

 

[jeffrez]

i dont understand how i got so lucky as to find a doctor to let me try these drugs, even without a positive test...and in canada no less. and he isnt a fly by night doctor either...he is very prominent. it is like some sort of miracle. i have no explanation for it...i just thank God it happened. at the very least, it may have bought me some time because it has given me some hope.

dont bother telling me its stupid of me to do this, i have literally nothing to lose. i am in the depths of hell 24/7..thats the stage of disease i am in.

so today feels similar to the first few days on the previous ARV's...a lot of inflammation...especially in head....and some joint pain. some GI issues too. just a lot of inflammation.

some guy named prometheus keeps pasting info from here onto ERV's forum and criticising me. :-/

sue

Your choice is your choice, and don't get me wrong: I totally respect your right -- and *everyone's* right with CFS -- to do whatever they think they need to do. I've been there, and I get it, believe me. Unfortunately, "being there" has sometimes led to choices I wish I hadn't made, choices that have harmed me further, and in retrospect I wish there had been someone there to at least present a different perspective for me to consider.

So I think it's important to take in *all* sides of any issue, especially important health ones like this. I'm not saying you haven't done that, but sometimes even the best of us simply can't think of everything. You say your doctor is very prominent and reputable, but I'll tell you what that means to me: zero. The doctors are 99 percent clueless when it comes to this disorder, imo and experience. Maybe yours is an exception, maybe not. I don't really know. One question I would have is to ask what else have you tried? Unless you've exhausted every reasonable and less potentially harmful option, then imo it's still premature to conclude one simply *has* to take antiretrovirals "as a last resort." What is hard for me to fathom is that this doc is giving them without even having tested you. That's what is bothering me. People even without a doctor I think have tested themselves. So to me it is irresponsible to treat without testing, since those tests obviously are available.

One last thing: I have no idea of any history this topic has had, how much it's been discussed, what other people elsewhere have said, etc. I have only been responding to what you have said here, in this thread. But if a lot of other people have also expressed the same idea, then perhaps there might be something to it. You have to make the most informed decision that you can, weighing all the options, I think is all anyone is saying. That's the gist of what I am saying, at least.

 

[Daffodil]

Rrr....ERV is some azzhole who writes a blog and keeps insulting dr. mikovits..she even called her the C word!

kite.....well...i did 3 years of valcyte and valtrex...spent all my moms savings traveling to NYC and michigan for years to see docs and get tests. i cannot afford anything IV such as cidofovir or ampligen or IVIG. i cannot afford nor have i the energy now to travel oversees for stem cells. i've tried antibiotics, all the supplements you can imagine, nexavir, you name it. i am done with that.

i have been tested for XMRV...culture was negative, PCR was negative and the old non-reliable serology was negative too. the newer test is pending.

i just dont know what the hell else to do...i am perpetually suicidal and cannot handle this anymore. i have a dependant so i cannot kill myself either - believe me, i very happily would.

 

[omerbasket]

Medical standards say it's irresponsible. She doesn't even know she has a retrovirus.




The first rule of medicine is to do no harm. Taking an antiretroviral when you don't even know you have a retrovirus breaks that rule pretty clearly.

XMRV is hard enough to detect. Who is to say that now that the field is contaminated with antiretrovirals that she might test false negative? So everything about this approach is irresponsible. It doesn't take me to say it is - it's the very definition of irresponsible.



On the contrary, I pretty much have the "right" to say whatever I want, just like everyone else does. I didn't criticize her, I criticized the irresponsible doctor who is prescribing these drugs who apparently hasn't even tested her for XMRV, let alone tried other safer options first. Imo, that doctor should have his or her license revoked, or at least be reprimanded.

As for "tone," it's actually your tone that is very hostile and critical, whereas my "tone" has always been very calm, reasoned and measured. You should put a check on that, especially when it's the very thing for which you are wrongly criticizing other people.

Yes, my tone is very hostile and critical, and it's not only my tone. I don't agree to be a bystander when you says such things in such a tone. You're tone is very critical, and is quite the opposite of "very calm, reasoned and measured".

According to the froum rules, you might have the right to say whatever you want, but according to society rules, you must not say such things in such a tone when it isn't your bussiness whatsoever.

The first rule of medicine is to do no harm. Taking an antiretroviral when you don't even know you have a retrovirus breaks that rule pretty clearly.

XMRV is hard enough to detect. Who is to say that now that the field is contaminated with antiretrovirals that she might test false negative? So everything about this approach is irresponsible. It doesn't take me to say it is - it's the very definition of irresponsible.

It might be that the first rule of medicine is "do no harm", but if this rule was enforced - than there would be no medicine. Every drug has side effects and some risk. Some of them are more risky and some are less risky. It is therefore a judgment call. Anyway, Sue knows that it's risky, sue knows that it's toxic, Sue knows that she did not test positive for XMRV and Sue knows that it might cause her problems in the future (drug resistance, problems with testing and more). However, Sue chose not to wait for the science to be finished - because this might take a long time in which she have to live in suffer - and to try these medications. There is a rationale for these medications to work, and by the way, there is currently no other approved drug for ME/CFS, so trying "safer" ones might also make more harm than good (what would you prefer - take a safer drug that would not work and then the more dangerous drug, or take the more dangerous drug in the first place?). Besides, Sue have tried other "safer" drugs in the past. They did not work for her.

You said:

Taking anti-retrovirals, RTIs, etc. when you don't even know if you have XMRV is completely irresponsible

Afterwards you have talked about doctors, and perhaps you meant only the doctor - but the direct translation of what you said is that a person who takes antiretrovirals when doesn't know if he have XMRV is irresponsible. Besides, you called Sue "crazy" for doing that.

For the end: If medical standarts say it's irresponsible to give a patient in a desperate situation, whose days are not days and nights are not nights, some somewhat dangerous drugs, because these drugs seems to have the best chance of helping that patient, and the patinet undersatnds the dangerous and wants to take these drugs - than I hope there are many doctors out there who are considered by the medical standarts to be irresponsible.

Anyway, even if you think it's not wise, you should not say it like that. You can advise her to do what you think is best for her - but you should not do that in such an aggressive and repulsive way, because this is not your decision to make.

 

[Daffodil]

thanks omer.

really doesnt matter who thinks its stupid...we'll all be on them in a matter of time.

 

[jeffrez]

Rrr....ERV is some azzhole who writes a blog and keeps insulting dr. mikovits..she even called her the C word!

kite.....well...i did 3 years of valcyte and valtrex...spent all my moms savings traveling to NYC and michigan for years to see docs and get tests. i cannot afford anything IV such as cidofovir or ampligen or IVIG. i cannot afford nor have i the energy now to travel oversees for stem cells. i've tried antibiotics, all the supplements you can imagine, nexavir, you name it. i am done with that.

i have been tested for XMRV...culture was negative, PCR was negative and the old non-reliable serology was negative too. the newer test is pending.

i just dont know what the hell else to do...i am perpetually suicidal and cannot handle this anymore. i have a dependant so i cannot kill myself either - believe me, i very happily would.

Wow, you're negative even. I don't even know what to say about that. It just seems like there are so many other things to look into, metabolically, methylation defects, etc. Even some antidepressants for a while just to manage the depressive aspect and suicidality. But perhaps you have exhausted all of them. In any case, I definitely wish you the best.

 

[omerbasket]

thanks omer.

really doesnt matter who thinks its stupid...we'll all be on them in a matter of time.

I would like to say that I definitley don't think it's stupid. I think that there are risks here, and you know that there are. But you are in a very hard situation regarding your health, and therefore your choice is very reasonable. Some people would have waited, others wouldn't. I think that I wouldn't, but I can understand those who would.
I think (as oppose to "know"...) that you won't be sorry about that decision of yours, even if the drugs wouldn't help you and would even harm you. I think that, because you knew the risks when you decided to take them, and you know the risks now when you are taking them. You decided to take the risk, because of your situation. Even if these drugs would harm you, there is a good chance that if a similar opportunity would come in the future with other drugs - you would make a similar choice again.

And after all of that: You are still to early, I think (although I'm not a scientist) on that treatment, and you've added tenofovir just a few days ago. So there is still chance for things to get better and we just cannot say for now if the treatment would work or not.

 

[jeffrez]

Yes, my tone is very hostile and critical, and it's not only my tone. I don't agree to be a bystander when you says such things in such a tone. You're tone is very critical, and is quite the opposite of "very calm, reasoned and measured".

According to the froum rules, you might have the right to say whatever you want, but according to society rules, you must not say such things in such a tone when it isn't your bussiness whatsoever.


It might be that the first rule of medicine is "do no harm", but if this rule was enforced - than there would be no medicine. Every drug has side effects and some risk. Some of them are more risky and some are less risky. It is therefore a judgment call. Anyway, Sue knows that it's risky, sue knows that it's toxic, Sue knows that she did not test positive for XMRV and Sue knows that it might cause her problems in the future (drug resistance, problems with testing and more). However, Sue chose not to wait for the science to be finished - because this might take a long time in which she have to live in suffer - and to try these medications. There is a rationale for these medications to work, and by the way, there is currently no other approved drug for ME/CFS, so trying "safer" ones might also make more harm than good (what would you prefer - take a safer drug that would not work and then the more dangerous drug, or take the more dangerous drug in the first place?). Besides, Sue have tried other "safer" drugs in the past. They did not work for her.

You said:

Afterwards you have talked about doctors, and perhaps you meant only the doctor - but the direct translation of what you said is that a person who takes antiretrovirals when doesn't know if he have XMRV is irresponsible. Besides, you called Sue "crazy" for doing that.

For the end: If medical standarts say it's irresponsible to give a patient in a desperate situation, whose days are not days and nights are not nights, some somewhat dangerous drugs, because these drugs seems to have the best chance of helping that patient, and the patinet undersatnds the dangerous and wants to take these drugs - than I hope there are many doctors out there who are considered by the medical standarts to be irresponsible.

Anyway, even if you think it's not wise, you should not say it like that. You can advise her to do what you think is best for her - but you should not do that in such an aggressive and repulsive way, because this is not your decision to make.

I'm not going to argue with you anymore over your attacks about being "repulsive" and all the rest of your ad hominem and poorly reasoned arguments. My tone has been logical and measured throughout, yours has not, but on the contrary has been hostile and combative. Any more personally affronting comments like you have been making and I will just report you. So I would recommend that you stop now. There is room here for more points of view than only yours. You somehow seem to think you have more of a right to express your opinion than I do, but you do not. Her decision is not your decision to make either, but you also seem to be forgetting or unaware of that. So you need to back off, calm down, and take a break from the attacks and assumptions of privilege or else I will have no choice but to report you.