Antiretrovirals

Picking up where we left the previous thread where I introduced myself :


The changes I have noticed on ARVs are :

- a restoration of my ability to perform single tasks without payback

- a restoration of my ability to perform consecutive tasks without payback

- a restoration of my ability to face light, sound, noise at a significantly higher level without payback

- better breathing and more calm and increased mood and confidence given I finally felt liberated from the corporal pain and was finally able to have my mental switch go back to the on function without fear of overload. No more overload feeling.

- eating more as less oesophagal payback. Better digestion. Increased appetite.

- appreciating how lucky I am and the growth that brings

- increased VO2max performance

- increased cd3 cd4 cd8 counts and stronger ratios of these

- better stronger immume strength in winter without drop in blood pressure and without being floored with the cold/flu

- ability to speak without payback and easier respiration through the respiratory tract which feels clearer

- brighter face skin colour

- no more muscle twitching

- no more feeling of breathlessness when walking up hills


The antiretroviral medications are

+Viread started in 2014 (x now looking to replace that with Vemlidy or Odefsey)
Viread initially gave me blue tongue and metallic taste for a month or so.
+Isentress started in 2015
Isentress initially made me drowsy and sleepy for a few weeks so took half dose for a month or two before hitting full dose.
+Kaletra started in 2017 (x now looking to replace that with darunavir+ritanovir)
Kaletra causes diarhoea occasionally so I take imodium loperamide once every other day

I have also reduced the above meds regimen to 5 days on and 2 days off.

Recently I have had some unexpected weight loss and feel the meds wearing off. Started the meds when I was at 50% on Bell scale. With the meds over time and with more molecules being added I went up to 95-100%. Sometimes even better than 100% because the meds can kick in really damn well. Now feel about 80% ish some days so this is why I'll look to switch to the other molecules mentioned above, though some days I can still feel 95-100% also so it's a hard call to make. Maybe I am expecting too much. Other molecules may wear down less the bones I gather..Likely however that the retrovirus is behind the wearing down and not the medications. Newer medications are now available that I hope to switch to with less toxicity. I am excited that they may maintain the positive effect. Options that reassure me.

I had been ill for about 20years before starting the meds. Got gradually ill after MR (measles/rubela combo) shot in 1994.


Will keep you posted. I have no long term regrets of being on ARVs. I will continue.

Hopefully there will be an XMRV Mikovits viral load test soon. And the same antiretroviral to retrovirus genotyping and phenotyping that HIV Aids patient have which helps them in the selection and switching of antiretrovirals when viral load rebounds.

New territory

 

There is zero evidence that XMRV is involved in ME/CFS, and zero evidence that it is involved in any other disease. XMRV is a virus that was accidentally created in a lab in the 1990s, whereas ME/CFS existed long before that.

Tenofovir is being used by some ME/CFS doctors, and shows efficacy, but that does not imply that there is a retrovirus infection in ME/CFS, because tenofovir also has potent immunomodulatory effects, which may fight the enterovirus or herpesvirus viral infections associated with ME/CFS.

Which of the antiretrovirals that you took produced the most benefits?

 

Thanks for sharing your experience.

Just a thought: with HIV infection it is important to adhere to daily ARVs to keep HIV viral load levels minimized to negate any chance of the HIV mutating 'around' the ARVs rendering them ineffective.

So if whatever is causing (your) ME is also a retrovirus, than perhaps it would be more helpful to take the ARVs daily?

 

Sometimes it can feel like I am overmedicated.
There are studies that show HIV patients being ok on fewer days. Like the famous ICARRE study. And other studies. So a lot more common than you may think.
But yes I could go back to them daily. But they ll be a time when I need to ease off.

XMRV Silverman is definitely dead. The Lipkin study in Sept 2012 only proved that.
XMRV Mikovits has never been disproven.
Multiple teams took the easy route out to keep secure funding. The retrovirus is being injected into people by the same companies and labs and authorities that fund research and medications made from blood products.

All of the arv s have been helpful.

 

What ARVs have u tried ?
Which helped you the most?

 

Are you by any chance "Hustler" from the Phoenix Rising forum (who also posted on PR under a previous username "Ellkaye"), and also on Health Rising? As that is exactly what he would write; he is also taking the same 3 antiretrovirals as you.

I just want to know so that we don't have to go through the same discussion about the XMRV negative studies, and can just refer people to the old XMRV thread where Hustler posted, which is here.

 

The only retroviruses I am aware that infect humans are HIV-1, HIV-2, HTLV 1 to 4, human foamy virus (which may possibly be linked to autoimmune disorders such as myasthenia gravis, multiple sclerosis and Graves’ disease), mouse mammary tumor virus (linked to breast cancer), and more recently it has been discovered that bovine leukemia virus (BLV) exists in at least 33% of humans (and does have immunosuppressive effects).

I started a thread on bovine leukemia virus here.

 

Really pleased to hear that @Kerqyalz is feeling better, but some people with CFS do just seem to naturally recover over time, without needing an intervention.

I'm concerned about the idea of someone being given ARVs on the basis of their symptoms rather than positive evidence of retroviral infe4ction. At the very least, such an apporach should only be a part of a properly controlled trial.

The claim XMRV causes CFS was debunked, and there's currently no evidence supporting the use of ARVs to treat CFS.

 

Drs Chia and Weir have anecdotally reported positive results with tenofovir for ME/CFS, and I know at least two people on the ME/CFS forums who have tried just tenofovir (without any other antiretrovirals) and experienced substantial benefits — and interestingly permanently benefits in both cases, which remained even after tenofovir was discontinued.

I have tried tenofovir myself, but unfortunately even at a very low dose of just 37.5 mg daily, it lead to mental health side effects, so I had to stop (but then I am prone to such side effects, due mainly to a viral brain infection which damaged the brain and created these mental frailties).

But I will be trying it again if I can get my brain into a more robust condition regarding mental symptoms.

 

It's down to individual patients to decide what is right for themselves, but IMO it's a bad idea for us to be using resources on things like this outside of controlled trials. Some people get better, some get worse - does the drug make things better or worse? Is it all a coincidence? Who knows? If all the money desperate patients had spent on speculative treatments had instead been funnelled towards rigorous research then we'd be in a much better place right now.

 

XMRV Silverman is dead.
XMRV Mikovits is alive.
CF is not CFS.
CFS patients have to be brave.
It's do or die.

 

@Kerqyalz , thank you for sharing the details of your direct experience.
I find it helpful to have "notes from the field" like this, and appreciate your taking the time to post it.

 

Thank you Allele.
TiredSam, it was a brave decision for me to go against the current and to take ARVs. Don't get me wrong. And yes they are strong meds. With the side effects I mentioned.
It was made to appear as a do or die situation by the heavies who published a fraudulent definitive negative study. It is in that context that I say do or die. In that context alone.
At some point u got to get up & do something.
NONE of the hundred plus negative XMRV study authors have ever discovered a retrovirus - they do not have what it takes because they have never shown themselves capable of discovering a retrovirus. You can count the number of people who have discovered retrovirus on half of one hand. The HIV discoverer, and the HTLV discoverer. They are the boss. Nobody else.

 

Just to say, as many folk now probably know, I took Tenofovir (Viread) for a year from late 2015. I was at the severe end of moderate ( or on some descriptors - “severe”) before I started, and am now probably at the better end of moderate. I still can’t work. So not a full recovery by any means but considerable quality of life restored to me. I am driving again for example.

It hasn’t been all plain sailing though, and after a dip this winter past, I’ve now started on a low carb way of eating, which seems to have somewhat turned the dip around. I was one of the lucky ones to respond to Tenofovir- but it had side effects - increased migraines for me. I’m glad to have stopped taking it and still to be holding ground - mostly.

 

@Kerqyalz:

Why are you describing Lipkin as a fraudster? Do you not think it's more likely that the many negative XMRV studies are a reflection not of fraud, but of the fact that XMRV does not cause CFS?

I'm worried that you may be caught up in some quackery.

This is a very weird thing to say:

"NONE of the hundred plus negative XMRV study authors have ever discovered a retrovirus - they do not have what it takes because they have never shown themselves capable of discovering a retrovirus. You can count the number of people who have discovered retrovirus on half of one hand. The HIV discoverer, and the HTLV discoverer. They are the boss. Nobody else."

 

Whatever happened to Elaine DeFrietas, and why was her work never followed up on?

 

In response to the last 3 messages and in no particular order, there have been retroviruses involved in neurological disorders before. I think in MS for instance. In the 90s everyone was focusing on HIV. Everyone else got shunned out.

5 years is a solid period of time on ARVs. It provides substantial insight into duration needed and effectiveness.
Everyone tries to stay positive in their own way.

If xmrv silverman wasnt as effective a decoy (capitalised on by many) then there would be far fewer negative authors and negative papers.
Two retroviruses. Two discoverers or 2 teams of. Only, yes. No more. HIV+HTLV. Yes everyone else are nobodies. At this level. Retrovirology is elite science.


The ARVs work.
Newer versions of tenofovir are now available.

 

I prefer proper scientific discussion with fact based arguments given rather than subjective opinion

Edited to remove any subjective opinion on my part