My experience with ARVs

[redo]

Hi


No, I haven't read that. Could you give me link? I'd really appreciate that.

It seems several medications that mess around with the immune system can cause CFS. Rimonabant is another example, it may cause both CFS and other CFS like syndromes.

 

[kess3881]

not for nothing but lots of meds these days that you can buy from the internet are counterfeit, might wanna take that into consideration.

 

[Xandoff]

To Gu3vara,

I was interested to read that you have not had a cold or flu in ages, since I came down with CFS in 2002 or 2003(?) I have not had one cold or flu? As a severe Asthmatic since I was 3 months old and was treated with immunetherapy for 10 years due to sixty allegies I always got colds and bronchitis as an adult. After I came down with CFS, no colds or flu. Perhaps my immune system is in hyper drive or maybe it is because I don't get out anymore.

I hope your gut is right, (it usually is) and you are turning the corner.

Thanks to RolandBond for his amazing story. I have entertained the same thoughts t times and I applaud his courage and also hope things turn for him. We are all in this together.

"Weakness is tiring, but strength is exhausting"

Charles Dickens
NN
Xandoff

 

[Daffodil]

has anyone heard from randalbond?

 

[randalbond]

Sorry, guys, too ill to be a member of any forum. Can't endorse ARVs in any way based on my experience.

 

[Esther12]

Sorry to hear that. Hope you start feeling a bit better soon.

 

[Daffodil]

randal.....you sounded exactly like me when i started the ARV's....i stuck through the hell and am now a little better. still homebound but no longer suicidal. i hope you get in touch.

love
sue

 

[Grape Funk]

What's the burning feeling like that goes along with the mold/ toxin exposure? Is it just when on antivirals or arv's or can happen spontaneously?

Btw xandoff, im the same way, don't get colds, and other little nuisance ailings either

 

[redo]

Randalbond: Have you tried Imunovir to get out of the relapse/worsening?

Imunovir works (as I understand it) by stimulating the immune system to fight the retrovirus. It's a real help to stop or slow down the HIV to AIDS thing (other drugs taken over now, but it stil works).


I'll try it soon. Keep in touch in caus you want to know how it goes.

 

[Forebearance]

Grape Funk: It feels like nerve pain in your skin. It can happen spontaneously.

I had it when I lived in a place with toxic mold growing in it. But it can also happen to someone who is experiencing a flare of inflammation. A general increase in inflammation can make you more sensitive to toxins of all kinds, I think.

I really hope randalbond is surviving okay these days.

 

[Daffodil]

has anyone heard from randalbond? i keep worrying a little. i think i messaged him long ago but got no response.

 

[redo]

This self-treatment gave mne ever increasig general malaise, really strong muscle and joint pains (never had them before), feeling like the area around a pussy zit and only exacerbated by massage or warmth, other my symptoms getting worse, cogitive abilities declining noticeably (now I can't talk or listen more than one pharise at a time, and an attempt to cocentrate on it makes my head spin, and feel really ill; for some reason I still can write but can't read what I've written) and paresthesia getting really bad and constant. Can't really describe how my head feels. Swelled brain feeling, then the strongest burning sensation, touching the head brings all sorts of weird sensations, find it hard to lie because the pressure from the pillow seems overwhelming and I have to turn on the other side, only to have to turn again in a couple of minutes. Sheer agony. Constant spells of dizziness. Don't think it's due to restricted blood flow. I used to take Nimodiphin, IV Cerebrolysin and other prescription drugs used for head injury and stroke patients to improve blood circulation and it didn't do a thing. I don't evenmentionNiacin flash and Ginkgo.
The thing is I stopped my unfortunate attempts of taking ARVs (intolerance?) more than a month ago, but am gradually going downhill, with the last days feeling my worst and paresthesia and flashing in front of my eyes getting really really bad.
[...]
I won't be checking my post, so sorry for any mistakes you find. Also, I may not be able to reply soon, so better don't ask me anything

I hope you are doing better Randalbond.

I got very much the same as you following a failed trial: General malaise, coming and going joint pains (never had them before), other of my symptoms also got worse, cogitive abilities have been especially declining (I have very much more severe problems). And, with me also it's actually easier to read than write following the relapse. My paresthesia is also (a heck of a lot) worse. With me also, it kept getting worse and worse for over a month after I quit (very strange thing, and it makes me think the ARVs poked at something, and not that it's "normal side effects"). I am much worse over a year after I quit. The symptom flare have not likely come as a normal side effect.

There are some things I think about this whole thing. One is that given our response, I still very much think retroviral involvement is a key in ME (although I am leaning more towards a endogenous retrovirus, such as HERV-Ws potential role in MS). Although I am much worse now than years ago, I don't regret trying given the knowledge I had at a time. My life is running out (getting older, it's slipping away so fast), so I'd rather try and have the potential to fail bad, than don't try and be guaranteed failure the next years or so.

If you're reading here Randalbond, I'd recommend the OTC antihistamine Alimemazine to help allivate some of those problems. It helped me, especially with the cognitive almost ADD like problems which have sprung out of nowhere when the ARVs whipped up the symptom flare.

 

[Charles555nc]

I was on Raltegravir and Truvada. And although I really wanted the Raltegravir to work and although at first I noticed increased energy and activity while on both, I think the raltegravir is the one of the two I cannot tolerate. Its feels literally like poison moving through my veins, irritating nerves all over my body, causing pain along my spine and upper back, and causing worse parathesia.

Im glad I didnt persist, because arvs are 100% capable of progressing your illness. My teeth were so sore after the Raltegravir, that I thought they might fall out. I thinK I might try jsut the truvada at some point, but I want a couple months to pass before I try again.

Im finding improvement with 5 grams sodium ascorbate, 50,000 iu of beta carotene, 2 grams lysine, proline, and glycine, 600mg NAC with each meal. It IS alot of pills but its working to make me feel better.

 

[redo]

If anyone has some thoughts on what could be causing the horrible exacerbation that both I and randalbond have experienced following the ARVs, than please do weigh in. It's been more than a year, and it's still there. And it's pretty alike with both of us.

It seems likely to me, that it has at least has poked at some relevant mechanisms.

 

[Daffodil]

maybe the ARV's killed off some weaker virus and when we stopped them, the stronger ones replicated?

maybe the drugs caused more mitochondrial damage?

very wild guesses....

 

[baccarat]

I briefly looked into arv a year ago when I thought I might give those a try. I quickly changed my mind after looking into side effects and hearing feedback from some hiv guys.
If I remember correctly they are associated with a higher mortality rate from various other causes. Quite brave anybody on them. Good luck.

 

[redo]

maybe the ARV's killed off some weaker virus and when we stopped them, the stronger ones replicated?

Thank you for your reply daffodil. The ARVs are supposed to work against RNA viruses, so I am not sure which weaker ones as you write that could be. I am not sure which stronger ones you are mentioning could be either.

Now that XMRV is dead, the only plausible thing I could think it could have poked at is a gamma retrovirus akin to the HERV-W virus (endogenous RV).

maybe the drugs caused more mitochondrial damage?

very wild guesses....

My doctor and I talked about that. Mitochondrial toxicity. But, after such a short course, it shouldn't last long (a month or two tops), it shouldn't just keep evolving a long time after I quit, and most importantly, my symptom flare didn't match the ones which comes from that.

 

[Daffodil]

hi redo. you are right...xmrv is TOTALLY dead. no hope for that one.

maybe there is another gammaretrovirus. i know many think its an HERV...but my gut tells me it isnt...

 

[redo]

Hi Daffodil,
I am worse right now, so I'm not doing much writing at the time. The failed ARV attempt made my illlness much more unstable and stronger.

If you can elaborate on why you think a ME retrovirus would be exogenous rather than endogenous, than that's appreciated.

 

[Daffodil]

hi redo. i guess ijust feel that if it was endogenous, there wouldnt be outbreaks.....its odd to have a cluster of people suddenly experience endogenous virus symptoms after the same infection, isnt it? it just seems counter-intuitive to me.

CFS can be shown to spread from blood to blood....if you drop CFS blood into healthy blood, you can actually watch the disease spread. would that happen with an endogenous retrovirus? hard to imagine..