Are you ready to take retroviral drug?

[Andrew]

Wondering what others think about jumping in and taking an anti-retroviral drug, assuming you have XMRV. Or assuming you don't.

Thoughts?

 

[JT1024]

Without a positive test for a retrovirus, I'm not about to take an anti-retroviral drug. I wouldn't recommend that anyone else do it either.

While XMRV may be found to be a significant factor for ME/CFS, I really would wait to see if I was positive before adding this to the many drugs/supplements ME/CFS sufferers use. It is apparent that our systems are not functioning well and to add a potentially toxic drug without evidence IMHO would be crazy. (However, I fully understand the frustration and desperation most of us have to get well).

Andrew, have you signed up for any studies? Finding out your XMRV status would help a decision... don't you think?

My thoughts are not to jump at retrovirals unless you know your have one!

~ JT

 

[Kati]

I personally think one has to take antiretrovirals in a controlled and safe manner, under the surveillance of a qualified doctor.

Testing + and qualifying for clinical trials, I would be more than keen to help out my fellows to determine which drug works best.

 

[Andrew]

JT. I tested positive for XMRV and my decision is to wait and see what happens. But I still want to know how others feel about this.

 

[gracenote]

I'm in no hurry to start anything right now. I want to wait for more information. And then I would want to carefully find a doctor who has experience with antiretrovirals AND ME/CFS to monitor me. This does not look like an easy path ahead.

 

[JT1024]

I am not sure if I'll test positive as my first diagnosis was FM. Years later, it was FM and CFS but I had been through substantial trauma in my life both physical and emotional (extremely out of the ordinary circumstances divorce). I don't know how many on this site first had FM but it would be interesting to know.

I'm concerned that I might learn that my current health problems are more extensive than I previously thought. I've not bothered with docs much since most docs in my area have believed CFS/FM were due to poor sleep or stress. I work with docs everyday and I'm not impressed with most. There is so much to know/learn these days, no doctor can be up on everything. However... docs can be human and acknowledge their limitations. Few like to do that. The better ones know what they don't know.

Bottom line... I know I want to be tested. I have MS, breast cancer, and other diseases in close family members that could be helped.

I'm way overtired and need to go to bed.

Good night all!

~ JT

 

[Gerwyn]

i think neuclotide analogues will be far too toxic because of mito damage.but i can also understand the desperation to get well

 

[CFS-FIBRO-LYME]

my life has become semi-livable on azt. i am still really sick but not suicidally so.

dr. lombardi estimates 2 yrs before better drugs come out.

i wish to God there was some other way but looks like lifelong antiretrovirals will be our future.

a little part of me is clinging to hope that they might find something about this virus that makes it somehow very weak and able to be eradicated...but i know that doesnt happen with retroviruses.

Ampligen is here now and works with both AIDS and CFS, so why should we have to wait for "better" toxic retrovirals?

 

[Dreambirdie]

I can't imagine taking anti-retroviral drugs, and at this point would not even consider it.

There has never been ONE drug that I have been able to take--not Tylenol, Benedryl, or even the vasconstrictor-free carbocaine at the dentist--without nasty adverse effects. I can't even stand next to someone who washes their clothes in Tide, without getting a headache.

My recent ordeal with 2 months of cardiac arrhythmia caused by topical iodine is just one of many "this-has-never-been-a-problem-for-anyone treatments gone wrong.

The wonders of modern chemistry have proven to be disastrous for me. My wish is that they make a powerful anti-viral from plants.

 

[leaves]

I would be up for taking antiretrovirals if they were part of a sensible clinical trial. However i would prefer starting with a cocktail as I am worried for developing resistance. No idea when these trials will start. Maybe if all goes well this fall?

 

[HopingSince88]

Hello Andrew,
I am 57 years old, and became ill at 35 years of age. I am waiting for the antibody test to confirm whether I have XMRV. If I am positive, it is my intent to seek treatment with anti-retroviral meds. I have already lost nearly half my lifetime to this illness, and I would like to think that I will be around to enjoy my grandchildren in a way that I could not with my own children. I have never given up hope that someday I could feel well. I truly want to re-engage with life, and I am certain that the only way to achieve this will be through some appropriate treatment plan.

Best wishes to you.

 

[jace]

The wonders of modern chemistry have proven to be disastrous for me. My wish is that they make a powerful anti-viral from plants.

Dreambirdie, I too have found the cure to be worse than the disease, pharmaceuticals giving me more problems than they solve. I'm using Cats Claw - I started recently, and I noticed a reduction in neural symptoms almost immediately - and I'm still on my garlic, mostly using Allicinmax. These two are both natural antivirals. Garlic is anti-fungal and anti-bacterial too. They both have a short action, so must be taken continually, in my experience.

I also use redbush tea, with a slice of ginger root sometimes, mint sometimes, liquorice sometimes, every day. All those things have a medicinal action - redbush (roibos) is anti-oxidant, liquorice has helped my sleeping patterns, ginger is anti-nausea, mint too, and all these things taste nice, unlike the bitter white pills that I found so hard to swallow.

Not a cure, I know, though. Ameliorating the worst symptoms is all I hope for. And to answer Andrew's question, yes I would take anti-retrovirals, but I would do my research first, and I would want good medical guidance.

 

[Otis]

I'm in no hurry to start anything right now. I want to wait for more information. And then I would want to carefully find a doctor who has experience with antiretrovirals AND ME/CFS to monitor me. This does not look like an easy path ahead.

I'm with gracenote at this stage as much as I would like my life back.

Otis

 

[Esther12]

No.

Even if I had a test result showing I was XMRV positive, I'd still want to wait for more information.

But then, due to a change in circumstances rather than a change in health, I've been able to rather enjoy life recently and am not willing to do anything that could risk my long-term health for potentially speedy recovery. I quite understand that others are feeling more desperate though.

 

[Dreambirdie]

Dreambirdie, I too have found the cure to be worse than the disease, pharmaceuticals giving me more problems than they solve. I'm using Cats Claw - I started recently, and I noticed a reduction in neural symptoms almost immediately - and I'm still on my garlic, mostly using Allicinmax. These two are both natural antivirals. Garlic is anti-fungal and anti-bacterial too. They both have a short action, so must be taken continually, in my experience.

I also use redbush tea, with a slice of ginger root sometimes, mint sometimes, liquorice sometimes, every day. All those things have a medicinal action - redbush (roibos) is anti-oxidant, liquorice has helped my sleeping patterns, ginger is anti-nausea, mint too, and all these things taste nice, unlike the bitter white pills that I found so hard to swallow.

Thanks jace--

I'm taking notes. I've tried some of these things, but not all.

The strongest natural thing I've taken for viral issues is Lauricidin, (Glycerol Monolaurate from coconut) which has been beneficial, but not w/o side effects. http://www.lauricidin.com/ As it turns out, in my case (and with others I've spoken with as well), the viruses are sometimes bound with heavy metals, and when they die off, the metals are released in the process. (I actually tested for metals during one such die-off. Quite a number of them were found present in my fecal sample.) These kind of major detox reactions are something I can't handle at this point. But in time, I hope I can give it another try.

 

[ukxmrv]

I'm watching and waiting to see how others get on. It's how I have done this in the past. The only new supplement I have added is from the Cheney protocol and it's Artesunate.

Pretty much all the natural alternatives are things that I have tried and had no success with before.

My choice will be severely limited as I live in the UK and have little access to any helpful meds. Can't afford to travel for treatment.

AZT is obviously of interest as it is off-license and generics are available from India.

At the end of May there is a conference in London with lots of interesting speakers. I'm going to attend that conference and pick up some pointers there.

http://www.investinme.org/IIME Conference 2010/IIME 2010 International ME Conference News.htm

XMRV+

 

[Robin]

No.

XMRV, supposedly, doesn't replicate very quickly as Coffin stated at CFSAC, and it's unclear at this point if antiretrovirals (which work by inhibiting replication) would help.

I'm so ill at this point that any kind of medication-induced setback would be disastrous. I would only try something if there are successful clinical trials.

 

[jimbob]

I'm not going to wait much longer! I'm 60 yrs old and have been sick for over 26 yrs! Maybe couple months more tops! I've already discussed it with my dr. and she's on board.

 

[Cloud]

Missing so many years of my life and having spent a few years off in that deep abyss of severe ME/CFS, I completely understand the choice to go for it with anti-retrovirals. I guess the bottom line is how much a person is willing to risk for the possible benefits. For myself, even being xmrv + and believing xmrv to be a major player with disease causation and progression, I would still have to say no to anti-retrovirals (at this point). I have 2 main reasons for this, 1) Fear of developing resistance due to inadequate Tx, and, 2). Toxicity. I too am on board with the natural/herbal approach (for now).

 

[serenity]

i am not ready, i will be watching the trailblazers like Ladybug with interest. i will take it once i am sure i know all i need to know & that the docs do too, but for now i wait...