AR/ARV's. Is there a point when it doesn't make sense to take them?

[Mewkiss]

Now I realize there is probably no real answer for what I'm asking but I'd like people's thoughts.

At what point in the course of the disease does treatment using AR/ARV's show no real benefit?

I'm tossing around talking to my doc about them once I get some labs done. I previously tested positive for several viruses so I'm sure there is a basis for me taking something.

But I'm not well and so I wonder if there is any appreciable benefit to taking them at this point in the disease process. I'm not looking for a cure, I'd like to at least stop getting worse and if in the process I feel a little better that is great, but I wonder if it is worth it.  Is there any evidence, anecdotal or scientific, that shows there is a benefit to the sicker of us.

There is also the issue of side effects and how much do you have to tolerate to make it worth the benefit, if there is a benefit. I had a pretty bad reaction to N-A-C. Horrible nausea and reflux.

I'd like some thoughts. And remember, I have only 1 working brain cell so don't get technical on me please.

[Frustration Personified]

Now I realize there is probably no real answer for what I'm asking but I'd like people's thoughts.

At what point in the course of the disease does treatment using AR/ARV's show no real benefit?

I'm tossing around talking to my doc about them once I get some labs done. I previously tested positive for several viruses so I'm sure there is a basis for me taking something.

But I'm not well and so I wonder if there is any appreciable benefit to taking them at this point in the disease process. I'm not looking for a cure, I'd like to at least stop getting worse and if in the process I feel a little better that is great, but I wonder if it is worth it.  Is there any evidence, anecdotal or scientific, that shows there is a benefit to the sicker of us.

There is also the issue of side effects and how much do you have to tolerate to make it worth the benefit, if there is a benefit. I had a pretty bad reaction to N-A-C. Horrible nausea and reflux.

I'd like some thoughts. And remember, I have only 1 working brain cell so don't get technical on me please.

Im near the end of a course of Valcyte.

Short answer: I dont feel like shit as much as did prior to taking it, but i dont feel worlds better. I think it has at least stopped my slide down the slope of illness.

I have not bad side effects from it. Its a fairly common AV.

[Firestormm]

10 February 2012: Tenofovir, Leading HIV Medication, Linked with Risk of Kidney Damage: http://www.ucsf.edu/news/2012/02/11508/tenofovir-leading-hiv-medication-linked-risk-kidney-damage

Motoya was doing some trials with Anti-virals if I recall. Can't though remember if he's published the results yet. Methinks it might have been Valcyte/Valgoniclovir or one of the two.

[In Vitro Infidelium]

Now I realize there is probably no real answer for what I'm asking but I'd like people's thoughts. At what point in the course of the disease does treatment using AR/ARV's show no real benefit?  I'm tossing around talking to my doc about them once I get some labs done. I previously tested positive for several viruses so I'm sure there is a basis for me taking something. But I'm not well and so I wonder if there is any appreciable benefit to taking them at this point in the disease process. I'm not looking for a cure, I'd like to at least stop getting worse and if in the process I feel a little better that is great, but I wonder if it is worth it.  Is there any evidence, anecdotal or scientific, that shows there is a benefit to the sicker of us. There is also the issue of side effects and how much do you have to tolerate to make it worth the benefit, if there is a benefit. I had a pretty bad reaction to N-A-C. Horrible nausea and reflux. I'd like some thoughts. And remember, I have only 1 working brain cell so don't get technical on me please.

These are extremely pertinent questions ? Lack of research means there is no sound available evidence regarding the cost/benefit of taking any anti infection medication as a treatment for M.E/CFS, but the absence of research isn't perverse because, as yet there's no (widely accepted) evidence of persistent infection of common agency across the M.E/CFS patient population. Even if infection plays a role in M.E/CFS there's no evidence that any one organism is involved, in which case targetting has to be case specific and there's huge variation in responsiveness to treatment even if a particular organism can be identified in a particular patient.

Even supposing a test for a virus is accurate (who is validating what ?), what is the basis for treatment if symptomology is potentially of some other cause ? Many viral infections are fleeting and asymptomatic - using a drug that itself can knock an M.E/CFS patient back into prolonged worsened health without any clear reason to consider that the target infection is actually a problem, is clinically problematic to say the least. All that aside perhaps the most concerning aspect of using antivirals is the problem of resistance. Without knowing what the disease aetiology is, there can be no certainty that the drugs would (if infection is causative of chronic illness) actually knock out the core problem. For example the patient may show high viral load for virus X, which is itself largely benign but which treatment will kill off, but virus Y may be present and 'silent' at the time of testing or simply not be identifiable by the test used. In the face of treatment virus Y may only be selectively killed, allowing it to evolve immunity to the treatment and removing that treatment (if it were to be prescribed for longer or at higher doses) from the medical armoury, should virus Y actually be identified at some future point. And of course treatment resistant virus Y may itself be a more serious challenge to health,  in which case resistance would deal a double whammy  - worse illness, and no treatment. 

IVI

[maryb]

I'm not really sure about taking AV's/ARV's - I've tried Valtrex for EBV but gave it up after a short time, some have had a lot more success, and if you know for certain the specific virus you are after then maybe?? If you have more than one that's where it gets trickier like IVI says.
I would seriously consider the herbal AV/s Samento/Simba and the like, in addition for instance Cheyney and other top ME docs have lists of immune modulators which work by helping the immune system to stabilise and thus battle with the virus/es more effectively

[Mewkiss]

@Frustrated, feel your pain and thanks.  @Maryb thanks.   Yes I wanted people's opinions about their experiences, not a bunch of technical medical information which doesn't address the personal  experience (AND which I cannot read because I have ME).

I have to get my PCP on board who is not a specialist.   I've tried OLE and N-A-C, both made me ill.  I will check into Samento/Simba.

I did have multiple viruses last time I got tested.  Who knows.   I just wanted some feedback from people who are taking them now.  Thanks

[Levi]

Mewkiss,

I tried Acylovir for a couple of years and it did not help.  I actually get a better antiviral effect with propolis. Which you can get OTC.  Good luck!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249695/?tool=pubmed

[Mewkiss]

Thanks @Levi.   Can you tell me how much Propolis you take and in what form?  I see capsules, liquids...

Mewkiss

[Jackie]

hi mewkiss! i've been on very high dose acyclovir - long term, over 6 years. (im a very virally subset!, dxd ME, fluctuating moderate to severe, housebound/bedbound - 45 yrs)

i was totally bedbound - severely ill, for some years prior to acyclovir. in my case it has helped me to improve in some areas..i probably couldnt survive without it (at the very least id be in (and out! - and in!) of hospitals, so i'm told). but i'll admit it took a long time to see those improvements.

(my biggest improvements (cognitive/memory) came during part of my 10 months on the ARV 'epivir'...but that didnt work out, unfortunately)

we are all so different in how we react to meds and protocols. (if you use acyclovir, make sure you hydrate MORE than you think you need to! and have your kidney function tested regularly)

(my husband is having some "success" with the chinese herb 'equilibrant' - an immune modulator (similar in that it contains 'sophora root'....but not as difficult to tolerate as 'oxymatrine").

....his ME has stabilized and is no longer spiraling downward! not moving forward much - but not going backwards either...which he had been doing. we are set to add inosine to the mix and see what happens)

if you ever choose to experiment with an immune modulator such as equilibrant - be sure and start very slowly! chinese herbs CAN have powerful, unexpected side effects)

good luck with your decision!

jackie (btw, wildaisy set up a poll for various treatments here)

[Mewkiss]

Thanks so much for your input Jackie.  I was just thinking this morning how long it will be before I struggle to get out of bed.   Right now I can manage inside.

I do know that we all have different reactions to things but I never read much info on how this helps the sickest of us.

If I can stop the progression then I will be happy.   Don't see my PCP til March and have to get her on board.  I don't now why docs don't just RX this stuff and let us try things.    I'm willing to take the risk so let me.   At worst I'll get sick and then stop, at best I'll see some results.

We shall see.    As for the polls, where are they?  If things aren't right in front of me I'm done.

[Levi]

Mewkiss,

I am not particular.  Right now I have a supply of 65% propolis tincture by this company:
www.beehivebotanicals.com
Which I take as directed (10drops) in a cup of tea twice a day.  I only use it when I think I am dealing with a viral/bacterial activation of some sort, I do not use it constantly. Bee products can cause an allergic reaction in some folks, so I went easy until I knew  how it affected me.

Thanks @Levi.   Can you tell me how much Propolis you take and in what form?  I see capsules, liquids...

Mewkiss

[Mewkiss]

Thanks Levi.  I'm looking at www.iherb.com right now and they have a lot of stuff.  I usually get stuff from them because of their great return policy.

I've not had a lot of luck with other stuff. Pretty much everything I have tried has caused a bad reaction of either nausea, headaches, reflux but I'll try anything. 

Can you explain the problem with Bee products?  I do remember many years ago, pre ME I got stung by a bee and my knee totally blew up.  Don't want to croak over this.

[Jackie]

im sorry mewkiss...i said poll - i should have said 'survey' (a link to a survey anyone using various treatments/protocols can participate in)...and the results/analyses arent finished yet (wildaisy needs help with this i think).

but...there are 3 pages of interesting comments that you can read....this survey of treatments is in the 'treatment' category...oh damn - i should have linked - just go to 'treatments' and scroll down about 10 topics maybe?)

bad brain day.

[Mewkiss]

@Jackie  Found it.  It was the last one on the first page. Thanks

I read the first page only, too much for me and but got a good idea of some OTC stuff to try if I want. 

We shall see I guess.

Thanks

[Levi]

The website mentions "allergic reactions" which I think could mean anything.  Its a bad sign that you have already had a bad reaction to a bee sting.  You might might want to print up some stuff about propolis and ask your Dr.; I can't give medical advice.   For myself, I always go very slowly with new stuff and tiny doses until I have a feel for how my body will react.  Good luck!

Can you explain the problem with Bee products?  I do remember many years ago, pre ME I got stung by a bee and my knee totally blew up.  Don't want to croak over this.