Naviaux et. al.: Metabolic features of chronic fatigue syndrome

[Nielk]

It is interesting to hear talk about similarities with HIV/AIDS because AIDS patients are constantly fighting pathogens and they are helped with antiretrovirals - which is the opposite of what this study's authors are proposing. Being that they are constantly attacked, I would assume that HIV/AIDS patients are in a hypermetabolic state.

 

[JaimeS]

Being that they are constantly attacked, I would assume that HIV/AIDS patients are in a hypermetabolic state.

I started off saying 'definitely not!' But now I'm thinking about it.

Their cytokine panels and Ig results are pretty similar to ours. It's not just for symptomatic reasons that docs kept misdiagnosing us.

 

[msf]

That would seem to be the case: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226020/

So perhaps they aren´t that similar, or are the mirror image of each other in a certain way.

 

[msf]

Going back to the discussion about hypometabolic states and chronic infection, I just found that if you google the two terms, the first result is the Naviaux study, and if you google it on Pubmed you get nothing, so I would suggest that the results aren´t in yet.

 

[msf]

http://www.ncbi.nlm.nih.gov/pubmed/20508267

Seems like this trick works in rather acute illness too.

 

[msf]

Hmm, things seem to be more complicated than I had realised: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2871553/

´Once mitochondrial dysfunction has developed, the regulated induction of a hypometabolic state, analogous to hibernation, may protect the cells from severe bioenergetic failure and a critical fall in ATP.´

 

[msf]

So did some of us go from hypo to hyper, and then back to hypo again?

 

[adreno]

That would seem to be the case: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226020/

So perhaps they aren´t that similar, or are the mirror image of each other in a certain way.

The study says that energy expenditure is increased in asymptomatic HIV, but decreased in HIV wasting and secondary infection.

 

[msf]

The study says that energy expenditure is increased in asymptomatic HIV, but decreased in HIV wasting and secondary infection.

It´s a bit more nuanced than that, apparently. REE seemed to be up in all of them, but TDEE was down in the later two cases because (they suggested) people with full-blown AIDS don´t go to the gym much.

 

[JaimeS]

That would seem to be the case: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226020/

So perhaps they aren´t that similar, or are the mirror image of each other in a certain way.

Soooo cool @msf.

I wonder what this means in regards to PWME who go into AIDS-like wasting.

 

[msf]

Check out the last paper I posted, it´s pretty interesting too.

By the way, is there a place where we can discuss the JaimeS paper, rather than the Naviaux one?

 

[Chris]

@Valentijn--re statins and Niacin--I was put on Atorvastatin before I came down with ME because I needed an aortic valve replacement, and some mild narrowing was discovered in on coronary artery, which of course they insisted on bypassing. Over the years I have dropped my statin to 6.7mg every second day, and done the rest by eating a low-fat nearly vegan diet. So I keep my cardio quiet at minimal risk. I did try Niacin for a while, but developed Premature Ventricular Contractions, and though that seems uncommon, an experienced nurse told me she had often seen that response. So I quit the Niacin, and the PVCs stopped. That may be just me, but it did happen just like that.

 

[JaimeS]

Check out the last paper I posted, it´s pretty interesting too.

By the way, is there a place where we can discuss the JaimeS paper, rather than the Naviaux one?

Ha!

I think it's okay to do here, so long as we keep it clear what's my idea vs what's Naviaux's. I tried to make that crystal on the article itself.

 

[Gingergrrl]

And a really daft doctor did prescribe me a statin.............and I was daft enough to take it.

It is so hard to not blame ourselves and I regret every day that I was stupid enough to take Levaquin. One of the six black box warnings that it now has is for mitochondrial damage but it did not have this warning when I took it in 2010. Both FQ's and Statins are a definite no no for those with ME/CFS or similar type illnesses. The doctors will never tell you this so we have to be our own advocates.

 

[alex3619]

http://www.ncbi.nlm.nih.gov/pubmed/20508267

Seems like this trick works in rather acute illness too.

This raises a question: is the hypometabolic state not about fighting infection, but preventing excessive inflammatory responses?

QUESTION: What is the duration of illness for any outliers in the Naviaux et. al. study? This might be important for shorter and longer duration patients.

 

[alex3619]

The doctors will never tell you this so we have to be our own advocates.

Doctors typically cannot keep up. There is far too much to know. We have to check out every single drug we are prescribed. One big problem though is we don't know enough either.

 

[alex3619]

My mother must've been tested six or seven times,

Only six or seven? Every new doc tests me again. I was tested, again, earlier this week for not only HIV but a range of other viruses, including Hep C. Heck, I keep getting tested for blood alcohol too, they don't care that I am alcohol intolerant, I think on the basis that alcoholics are presumed to lie.

 

[osisposis]

haven't been following thread but I was just thinking about hyper vs. hypo myself. I was looking at how some GWI Vet's have th17 th1 while others have th2 side witch points to autoimmunity ect. I'm thinking th1 may be hyper side while th2 might be hypo side, ? mainly because we have differences in severeity, I still think theres debate as to weither we might bounce back and forth here or weither once th2 always th2. could it be that those still th1 may still be fighting exposure but haven't gone over that tipping point to th2, maybe not quite in the same place as the more severe that may be th2 , I wonder if looking at th1 /th2 imbalance might help separate us , seems it would unless we do jump back and forth.

 

[osisposis]

This raises a question: is the hypometabolic state not about fighting infection, but preventing excessive inflammatory responses?

QUESTION: What is the duration of illness for any outliers in the Naviaux et. al. study? This might be important for shorter and longer duration patients.

may be, it's bad inflammation that puts me back in bed, not the re-accuring infection /sweating like a dog stuff, sweating out makes me fell better for a time afterwards, inflammation can put me into a world of pain in my brain and body.

 

[Mary]

There are non-statin alternatives for lowering cholesterol. One is niacin, vitamin B3.

My cholesterol has been high probably the last 20 years, until my latest test which was in the normal range, and I believe it was because I've been taking niacin for sleep. (my diet has been great for years and years) I wouldn't touch a statin with a 10-foot pole regardless of my cholesterol levels. I was fortunate to have one doctor who did a test (cannot remember the name of it, but could find out if anyone wanted it) which measured the size of my cholesterol molecules and mine were large and bouncy - yes sounds strange, anyways he said that was good and so he wasn't worried.

@Countrygirl - you probably know this, but statins deplete CoQ10, which is a major cause of muscle damage and may have caused your symptoms. So CoQ10 might help you.

@mermaid - has your friend who took a statin tried CoQ10? It might help with his recovery.