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Exciting New Discovery in Treating CFS & Fibromyalgia

Messages
51
Don't think that this has been posted before. Apologies if it has.


Jacob Teitelbaum MD

From: https://www.psychologytoday.com/au/...ng-new-discovery-in-treating-cfs-fibromyalgia

Once again I'm convinced that God has a great sense of humor!

For decades I've talked about how cholesterol medications (called statins) are overused in general, and especially so in fibromyalgia where they can cause more pain (by causing hormone and coenzyme Q10 deficiency). I suspect that except for those with known heart disease, where they can be lifesaving, statins have caused more harm than good. But there may be a silver lining to the statin medications' dark cloud.

New research suggests that statins might have a very helpful antiviral effect at high dose, and they may even hold promise as an effective new treatment for CFS & fibromyalgia if special (and simple) natural precautions are added in. The new theory I will present today also offers new possibilities for helpful and easy testing and treatment, while offering an understanding of a large new piece of the CFS/FMS puzzle.

Although time will tell how big a role this new concept will play in CFS, it offers simple testing and treatment that can be helpful NOW!
An Important Cautionary Note

I usually prefer to have broader research and more direct clinical and personal experience exploring new treatment theories before I start reporting on them (which would take 1-2 years). I have chosen instead to put the theory out there to invite discussion. Bringing many expert perspectives to bear will help it get tempered closer to the truth more quickly. Much of what I discuss below is new, controversial and hypothetical, and should be discussed with your holistic practitioner or CFS specialist before attempting a trial of the statin prescriptions.
Background

Many infections have been implicated in CFS, including the recent reporting of XMRV. As part of their reproductive cycle, many viruses require cholesterol-related molecules for many different functions, including making their protective coat. As part of your body's defensive functioning, your cells make an important family of immune molecules called interferon, which seems to work in part by decreasing the cholesterol production pathway and starving the virus.

Interferon levels (there are 27 different types) can be both high or low in CFS. In CFS patients, interferon alpha tends to be low while interferon beta is elevated. Interestingly, interferon injections can trigger symptoms that feel like CFS. Paradoxically, in a small subset of CFS patients interferon treatment helped (though not a lot).3-4

So what to do? You might be able to "eat your cake, and have it too" by starving the virus while giving your body the natural support it needs. This new research opens possible ways to suppress the many viral infections in CFS, even retroviruses such as XMRV!
Found - A Key Missing Piece of the CFS Puzzle!

Although the energy crisis and associated hypothalamic dysfunction, along with direct gland failure (e.g., low thyroid adrenal exhaustion) explained most of the abnormalities we see in CFS and fibromyalgia, there have been a few missing pieces over the years that were not explained by these - which frankly left us puzzled. Here are a couple items I've scratched my head over in CFS:

Very low cholesterol levels are often seen in CFS (sometimes high levels are seen, but these are usually due to low thyroid function).
Dramatically low levels of a hormone called pregnenolone (made from cholesterol, pregnenolone is the critical building block for steroid hormones such as estrogen and testosterone).

This new study now explains why cholesterol and pregnenolone are sometimes very low in CFS. Viral infections cause your body to make interferon, which suppresses the mevalonic acid pathway that makes cholesterol and pregnenolone.

This is likely another key reason - along with the hypothalamic dysfunction, gland dysfunction and receptor resistance - for the widespread hormonal disorders we see in CFS/FMS.

This finding is significant in that it not only suggests that low cholesterol or pregnenolone in CFS may be caused by a viral infection, it also suggests new possible treatments!..........

(Moderator edit: for full article please go to the above link.)
 
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JES

Senior Member
Messages
1,323
Yeah this is very old news in ME/CFS world. The hypothesis and reasoning actually made sense to me, at least for the subgroup suffering from chronic infections, so I decided to trial a low-dose natural statin (red rice, which contains monacolin K). It seemed to have some anti-inflammatory effects, but after a couple of days made me worse.
 

Hip

Senior Member
Messages
17,874
Interesting, I did not know that statins have antiviral effects, but I just found an in vitro 2015 study which demonstrates certain statins (namely simvastatin, atorvastatin and fluvastatin) are antiviral for cytomegalovirus (CMV).

However, compounds which are antiviral in vitro often turn out not have any significant antiviral effects in vivo, usually because the concentrations used in vitro may be too high to obtain in vivo (the maximum safe oral dose limits the blood concentrations you can obtain in vivo).

This may be the case with statins, because although this 2011 mouse study found simvastatin at 50 mg/kg daily resulted in a 10-fold reduction in cytomegalovirus viral levels in the organs of the mice (which is a potent antiviral effect), the 50 mg/kg dose they used would be equivalent to around a 325 mg daily oral dose in humans (for an 80 kg person). But the normal maximum dose of simvastatin used in humans is 80 mg daily.

So this is an example where potent antiviral effects for CMV are available at very high doses of statins, but I could not find any sources indicating that doses of more than 80 mg of simvastatin are safe. So these potent antiviral effects would not be available at normal doses of simvastatin.

Nevertheless, you would get some mild antiviral effects for CMV from statins even at normal doses, so if you are an ME/CFS patient who does have chronic active cytomegalovirus, and you were advised by your doctor to take statins for cholesterol, then simvastatin, atorvastatin or fluvastatin might be good choices, as you would also get some mild antiviral benefits.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
The devil is in the detail hey @Hip - that certainly is a potent effect. I have no idea what the statins are unsafe but it's a shame they are. My CMV bloods came back reasonably high but armin results are a nightmare to read anyway as anyone who's read up about them knows - so who knows for sure!