Exciting New Discovery in Treating CFS And Fibromyalgia

Jacob Teitelbaum, M.D.Board certified internist and Medical Director of the Fibromyalgia and Fatigue Centers, huffingtonpost.com, Posted: 06/ 4/11:

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 and 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 one to two 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!

Key Points

This work uncovers a potential novel cause of CFS involving the process your body uses to make cholesterol. Here are the key points to this:

The production of cholesterol, coenzyme Q10 (CoQ10, a key energy metabolite), and other key hormones relies on your body's mevalonate pathway. The new research suggests that viral infections "hijack" this pathway to make their protective outer coats. In response, your body makes interferon, which suppresses the mevalonate pathway, which in turn suppresses the virus.
Acute infections respond well to this, as the interferon production is helpful short term. But long term, this can lead to starving your body of CoQ10 and key hormones. This appears to be part of what happens in CFS.
Cholesterol blockers mildly block the same pathway and can actually have a mild antiviral effect at low dose (and a strong effect at high dose). These medications are used long term to treat high cholesterol. But this may starve the body of CoQ10 and pregnenolone and can, therefore, flare CFS/FMS. So I recommend against statins unless you also give the body the CoQ10 and pregnenolone it is being starved of at the same time.
Implications for Diagnosis

The presence of a low or low-normal pregnenolone level in someone not taking statins suggests your body is making elevated levels of interferon to fight a chronic viral infection, which also suggests a high risk of inadequate hormone production and CoQ10 deficiency. Low cholesterol levels may suggest the same thing.

Implication for Treatments

Have the pregnenolone and cholesterol blood tests performed. If either is low or low normal, add CoQ10 and pregnenolone supplementation to your diet. Also add an Omega 3 fish oil to help give your cell walls what they need while your body is blocking cholesterol production.

I also suspect the low pregnenolone is a marker for a viral infection. Though it does not identify which infection, it does offer a potentially powerful new way to stop the virus from growing. It might not kill them, but it will make it hard for them to reproduce.

So here is an overall treatment regimen to consider -- especially if your CFS began with flu-like symptoms and has not improved adequately with other treatments:

Take zinc 25 mg a day for three months, then 15 mg daily from then on, as chronic infections will routinely cause zinc deficiency and immune dysfunction.
For four to six weeks, also take the pregnenolone, CoQ10 and fish oil as described above. Continue these for at least three months after taking the medication described below. These by themselves may leave you feeling a lot better at six weeks.
Here is the more experimental part that you will need to discuss with your physician Your physician may consider adding a statin medication. Take 20 mg a day for two to four weeks (to make sure it does not cause side effects -- it usually will not, but if it does, stop it), then 40 mg a day for three to four weeks. If you feel OK on the medication, they can raise the dose to 80 mg a day. Continue for three to four months more and check or recheck your lab numbers. If this is not helping after four to five months, stop taking the statin -- statins can cause liver and muscle inflammation. This is unusual, but it is why the testing is important.
Which Viruses Have Been Shown to Be Suppressed by Statins?

Many different families of viruses, suggesting a broad antiviral effect. These include:

Epstein Barr Virus (inhibits its triggering lymphoma)[6]
West Nile Virus[7] -- An RNA Virus
Rotavirus -- In this FDA "test tube" study, the authors noted an approximately 99% drop in some viral tests, and a bunch of deformed inactive viruses[8]
Polio[9]
Hepatitis C -- but effects were mixed[10-12]
HIV 1 (a cousin to the AIDS and XMRV viruses)[13]
RSV -- Respiratory syncytial virus[14]
And perhaps even the flu virus[15]
Does This Mean I Need to Avoid Cholesterol in Food?

No. The studies I've seen suggest that the branch of the chemical pathway that needs to be blocked for the antiviral effects occur before the cholesterol step, and adding cholesterol did not impact the statins antiviral activity. In fact, adding an egg or two a day (a good cholesterol source along with other nutrients) may be helpful to protect your cell membrane production.

Still to Be Answered

A lot. For example, with this theory if cholesterol levels are high, pregnenolone should not be low. But in real life, we often see a mismatch. So there are other pathways and issues going on here, and this is reflected in the studies referenced below. In addition, there are many members of the interferon family, and some are low while others are high in CFS. Also, dozens of other immune chemicals may be altered in CFS -- though interferon may be a key "conductor of the cytokine orchestra," and the theory I am discussing today is meant to be an oversimplification. In addition, normal pregnenolone and cholesterol do not mean there is no virus or that the treatment above won't help. But low levels are suggestive of a viral issue.

At this point, the data is still not in on how this would work in people.
But we do know CoQ10 helps. We know pregnenolone is often low (and is very important). And we know that statins show antiviral effects in many studies. So we have a really good start!

Love and Blessings,

Dr. T