Antiretroviral Trial

[redo]

Relatively speaking the treatment have a good safety profile if the patient is being monitored (standard blood tests): You can pick it up quickly if the patient is getting kidney or liver issues, so if monitored, that's not a problem.

If you're worried that the other side of the issue has not been debated, then I suggest that you read through part one of the thread. It has every argument you have brought up.

I think we can agree that one size does not fit all. And the decision is at last for the patient and doctor to make together. Personally I would choose to treat rather then not treat. But that's my decision to make, just as it's your decision that you would not do it.

I think we all know each other positions...

If someone plans to discuss the right-or-not-right topic further, then please check the old thread first. I'd like this thread to remain readable.

 

[Navid]

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.

JW:

Nice, constructive post.

Sue, sorry your are having these issues but JW's theory cld be a good one to help u thru these tough times....as long as you continue to stay on the drugs.

my doc has described the effects of treatment w/anything (drugs, supple, herbs, etc) in a similar manner to what JW wrote.

make the right choice for yourself....but know we all support you regardless and only hope for your recovery.


p.s. thank you for continuing to share your journey with us.

one more thing: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.



are you on NSAID's for inflammation? sorry if this is a dumb question but that could help. also have u talked about the IRIS affect from ARV"s w/your doc (this is when having the assistance of an HIV/Aids doc wld be very helpful....it's well discussed and treated in HIV/Aids world.

 

[gu3vara]

I'll just add my two cents quickly, I'm quite sure a worsening of symptoms will be quite inevitable with treatments, for how long, I don't know.

You have to remember that inflammation is a normal component of healing. Extreme inflammation is a reason to use anti-inflammatories but stopping normal inflammation slow down the healing process.

Having increased inflammation could be a good sign the treatment is working actually (not necessarily, the treatments could simply be way wrong for you too like Mr Kite said). But still, it could be a possibility.

Making the parallel between AIDS and CFS and assuming XMRV is to CFS what VIH is to AIDS, I suppose that giving ART to full blown AIDS patients is probably an awful experience for the patients. The inflammatory response can even be deadly to those who have a certain virus in their brains (don't remember the name sorry). An individual HIV positive taking ART at the early stage is probably doing just fine on ART. If CFS compare to full blown AIDS in the way it's the late stage of the infection, then we can assume the inflammatory response will be unpleasant (to say the least!).

I'm personnaly seeing an energy healer (believing in it is not important here, he healed my friend of fibromyalgia in 4 months with energy work and dynamized water only so I have no choice but to believe...), and after 2 visits, I started having inflammation in my liver, spleen and kidneys. I have swollen lymph nodes all over too. My immune system is now fighting something, but I feel like a train hit me. I truly believe i'm on the road of healing now. I'm certainly not having a bad reaction to energy

Think also of Lyme patients who are nearly wishing to die because of the extreme die-off from antibiotics, does that mean they should stop treatment, of course not.

I'm willing to suffer if it means eventually getting healthy.

I don't know if ART is the way to go right now, I'm not interested right now, too much unknown. I don't except that any kind of treatment for CFS will be die-off free, makes no sense to me.

 

[omerbasket]

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.

Report me if you'd like. I am not going to not-comment on your attacks against Sue. Even if these attacks come from you trying to make someone choosing what you think is right - There are ways to say that. As I've said, there are people here who thinks that they wouldn't have decided what Sue have. I remember that when Sue thought about taking antiretrovirals, at first when she didn't know her XMRV result. and later when the first tests came back negative - many many people advised her against that. But there is a way of saying stuff. Calling her decision "crazy" and throwing "irresponsible" at her doctor and, litteraly, even if you didn't mean it, at her to - It's not the way. It is offending, and I would not be a bystander on that issue.

There are opinions - and they are very welcomed, even if they are different than mine. But I don't when a person makes a decision, and another person call him "crazy" for that, I would deffend the person who was attacked here.

You don't need to argue with me anymore about you being "replusive" and "all the rest of your (mine) ad hominem and poorly reasoned arguments". If you want to, you can think about the things I and others have said. You might find them right and you might not. I'm just saying, that any future comment from anyone that would be in the spirit of your comments here, that would be offensive against Sue's decision (and perhaps you didn't mean to offend - but the comments of your's here against Sue's decision are very offensive) would meet the same reactions by me, and I hope that by others as well. If you wish the adminstrators to ban me from the forum, you may ask them to do that. But as long as I have the opportunity, I would do what seems to me as justice. And telling you that your messages on this thread are inappropriate, is, as I see it, justifiable.

 

[jeffrez]

Report me if you'd like. I am not going to not-comment on your attacks against Sue. Even if these attacks come from you trying to make someone choosing what you think is right - There are ways to say that. As I've said, there are people here who thinks that they wouldn't have decided what Sue have. I remember that when Sue thought about taking antiretrovirals, at first when she didn't know her XMRV result. and later when the first tests came back negative - many many people advised her against that. But there is a way of saying stuff. Calling her decision "crazy" and throwing "irresponsible" at her doctor and, litteraly, even if you didn't mean it, at her to - It's not the way. It is offending, and I would not be a bystander on that issue.

There are opinions - and they are very welcomed, even if they are different than mine. But I don't when a person makes a decision, and another person call him "crazy" for that, I would deffend the person who was attacked here.

You don't need to argue with me anymore about you being "replusive" and "all the rest of your (mine) ad hominem and poorly reasoned arguments". If you want to, you can think about the things I and others have said. You might find them right and you might not. I'm just saying, that any future comment from anyone that would be in the spirit of your comments here, that would be offensive against Sue's decision (and perhaps you didn't mean to offend - but the comments of your's here against Sue's decision are very offensive) would meet the same reactions by me, and I hope that by others as well. If you wish the adminstrators to ban me from the forum, you may ask them to do that. But as long as I have the opportunity, I would do what seems to me as justice. And telling you that your messages on this thread are inappropriate, is, as I see it, justifiable.

Oy, just give it a rest.

You don't like what I said, or how I said it. We get it. It's not up to you to tell anyone else "how" to post their thoughts. I happen to be struggling very severely with cognitive issues related to CFS and to Hashimoto's thyroiditis beyond which you can probably even begin to imagine. I state things in the clearest and most concise way I can. If you don't like it, that's your problem. Take your problem and deal with it. Don't make it everybody else's problem. And stop making it my problem. This isn't your forum or even your thread to be telling anyone how to post, or that they have to conform to some "social rules" you have made up for yourself. So please for the last time just give it a rest.

 

[omerbasket]

I've made all of my points clear and I stand behind them. There is really no point for further words here.

 

[jeffrez]

I've made all of my points clear and I stand behind them. There is really no point for further words here.

Great, you stand behind them. You don't like what I said, while you were posting the ugliest personal attacks in the forum. Good going.

 

[redo]

If there is a moderator reading, could you move the discussion about right-or-not-right (and the off topic discussion that followed) over to the old thread? I don't want this thread to end up as a too-long-to-read quarrel thread. It's headed in that direction now.

 

[Rrrr]

I'll just add my two cents quickly, I'm quite sure a worsening of symptoms will be quite inevitable with treatments, for how long, I don't know.

You have to remember that inflammation is a normal component of healing. Extreme inflammation is a reason to use anti-inflammatories but stopping normal inflammation slow down the healing process.
Having increased inflammation could be a good sign the treatment is working actually (not necessarily, the treatments could simply be way wrong for you too like Mr Kite said). But still, it could be a possibility.

Making the parallel between AIDS and CFS and assuming XMRV is to CFS what VIH is to AIDS, I suppose that giving ART to full blown AIDS patients is probably an awful experience for the patients. The inflammatory response can even be deadly to those who have a certain virus in their brains (don't remember the name sorry). An individual HIV positive taking ART at the early stage is probably doing just fine on ART. If CFS compare to full blown AIDS in the way it's the late stage of the infection, then we can assume the inflammatory response will be unpleasant (to say the least!).

I'm personnaly seeing an energy healer (believing in it is not important here, he healed my friend of fibromyalgia in 4 months with energy work and dynamized water only so I have no choice but to believe...), and after 2 visits, I started having inflammation in my liver, spleen and kidneys. I have swollen lymph nodes all over too. My immune system is now fighting something, but I feel like a train hit me. I truly believe i'm on the road of healing now. I'm certainly not having a bad reaction to energy

Think also of Lyme patients who are nearly wishing to die because of the extreme die-off from antibiotics, does that mean they should stop treatment, of course not.

I'm willing to suffer if it means eventually getting healthy.

I don't know if ART is the way to go right now, I'm not interested right now, too much unknown. I don't except that any kind of treatment for CFS will be die-off free, makes no sense to me.

hi... thanks for your thougthful post. i will say, tho, that there are many lyme patients (me included) who thought it was a good idea to go off of the antibiotics. that they were hurting us, or at least me. and i did not even have extreme die of from them. just adding this to give another perspective on antibiotics and lyme...

 

[glenp]

So sorry Sue

I am sorry things are not moving ahead as you had hoped Sue

My doctor gave me samples of a couple new vaso restrictors and they are helping me the same as the maxalt does. I wonder if one of the NEW ones would help you. They might be just a little different enough to be able to help you. He gave me "Avert almotriptan malate tablets" and "Frova" I havent tried the Frova yet. I am no where as severe as you but maybe the new ones could help just a little.

I dont know what else to say Sue

 

[gu3vara]

hi... thanks for your thougthful post. i will say, tho, that there are many lyme patients (me included) who thought it was a good idea to go off of the antibiotics. that they were hurting us, or at least me. and i did not even have extreme die of from them. just adding this to give another perspective on antibiotics and lyme...

Yeah, I agree that those harsh treatments are probably not the best thing for PWC. Perhaps XMRV is a key factor here, maybe those positive aren't helped as much by them.

 

[Daffodil]

thanks guys. i was reading dr. deckoff-jones blog and she said her symptoms worsened when she started a new med...so maybe its ok. but i am really in the depths of hell right now.

thing is..even if i do start to show signs of kidney and liver problems ( i think i saw a borderline kidney test result )....its not like i have other med options. he will just take me off the meds and thats that.

its funny...even being in bed for yrs and being this sick and taking these drugs and doing all this research..i still spend most of the day in a state of disbelief that this is happening and i keep dreaming of it going away, being eradicated. i cant even accept the reality yet. i dont even think i ever will. and that adds to the suffering

 

[Daffodil]

hi sickof....i know about the syndrome but not from my doc...i read about it. but i also experienced initial worsening and a little improvement valcyte....and improvement in biomarkers on valtrex....none of it was sutained though. i just cant trust that initial inflammation means anything because i have had it all before. and my blood work never really showed active EBV or HHV6 either. thats why i had the blood work recently, to see if there has been any change at all, but there was absolutely none. i have no idea if i am being helped at all. certainly, i would be more patient if i showed active XMRV.

now that several XMRV strains have been identified, perhaps testing will become even more accurate..

 

[redo]

Well thought about the strains. Genetic variances could make testing a lot more difficult (as if it wasn't difficult enough as it is).

I have thought long and hard about ART myself. And if I could afford it, I would do it. The risks are acceptable to me.

When I consider it, I take into consideration that if I would do nothing there is a huge risk of having to live this terrible life for several more years. That's a risk I would not be willing to take. I'd rather not live.

 

[ukxmrv]

Sue, I'm in bed but still cheering you on. Really understand why you would want to start treating in this way. Some of us have less to lose than doing nothing or the same old things that didn't work over the years.

I'm XMRV+ and my experience was that I would react badly to drugs. Antibiotic treatment was a disaster. People kept talking about their herx reaction but eventually getting through that and improving. I just got worse and worse. Finally gave up and started slowly to recover to what I was before but I'm talking years and slow.

The only thing that has really helped so far is Valrex, no herx, symptoms improved but no where near a cure. I've not been able to afford to but Valctye. Immunivor was good as well but less than Valtrex.

Then I'm in a different situation because I test positives for viri.

Sorry, Sue that you are so ill and that there are no answers. I think you are very brave. Understand your choices.

 

[Daffodil]

thanks, all. appreciate your posts.

redo...azt is cheap and you can get isentress free from the company. i think jimbob did it. i am not sure about tenofovir.

sue
xoxo

 

[redo]

I've tried directly the company (merck), but with no luck. I think I'll give it one more go.

I don't qualify for the needymeds which jimbob went for.

 

[citybug]

They are saying that more Mulvs have been found in humans, not published yet. All mulvs closely related to XMRV so maybe react to same drugs. You are a warrior Daffodil -but if you want to stop we'd all be with you, safety first.

All relapses make me depressed, sometimes it helps to tell myself that.

Listening to scary lecture, I reminded myself to try to feel good in my cells, remember some purpose that keeps me going. Being able to see is great. It is like the twilight zone having this illness. I think denial got me through a lot of years.

Inflammation seems to be a big thing with xmrv. Have you heard any recommendations for that? Could we take smaller doses of the rvs?

 

[grant107]

daffodil, have you had any blood work done, such as, liver and kidney function test? That could reassure you that everything is alright.
good luck,
Jean

 

[judderwocky]

They are saying that more Mulvs have been found in humans, not published yet. All mulvs closely related to XMRV so maybe react to same drugs. You are a warrior Daffodil -but if you want to stop we'd all be with you, safety first.

All relapses make me depressed, sometimes it helps to tell myself that.

Listening to scary lecture, I reminded myself to try to feel good in my cells, remember some purpose that keeps me going. Being able to see is great. It is like the twilight zone having this illness. I think denial got me through a lot of years.

Inflammation seems to be a big thing with xmrv. Have you heard any recommendations for that? Could we take smaller doses of the rvs?

hey just wondering if you could point me to where they are talkinga bout the other MuLv's .... thats very interesting and ive been waiting for them to start looking into this sort of thing.