When to Use Antivirals in Fibromyalgia and CFS

Published: November 9, 2016

I recently received a question from one of our website visitors and thought it might be of interest to many of you. So I decided to make it the subject of this week's newsletter.

The visitor asked: "I recently read that antivirals for CFS can do more harm than good if there's no evidence of a current infection. I have a high early antigen EBV, but I'm confused if this is relevant since it's not an IgM antibody. My physician says she no longer checks for it because even healthy people can test positive. Can you clear this up for me?"

This is a bit complex, so please bear with me as I go through this...

It's true that IgG elevation reflects old infection, and most healthy people test IgG positive for EBV, CMV, HHV 6 and HSV1. Because of the immune dysfunction in fibromyalgia and CFS, viral reactivation is usually detected. This will not result in the standard IgM test for acute infection being positive, but has been shown to be associated with very high IgG titres in combination with a clinical picture that is suggestive. Though there is no set cutoff for the IgG to confirm viral reactivation, I consider titres of 4 (or 1:640) or higher to raise a suspicion for HHV 6, CMV, and perhaps HSV 1 reactivation.

For Epstein Barr (i.e., Mono), the EBV IgG antibody is positive in about95% of the healthy population. The EBNA is positive in 91% and the VCA IgG in 98%. Looking where they are relative to the median levels may add some information. For now, when checking for Epstein-Barr antibodies (EBV), the only test we really need is the EBV Early Antigen Ab, IgG. This test is positive in only about 52% of the population, where the other Epstein-Barr tests are positive in about 90 to 95%, making them not very meaningful. If the person wants a little more information, we can add the EBV VCA IgG antibody. The median level (half the population is less than this) is 186 AU/ML for the EBV VCA and 10.7 AU/ML for the EBV Early antigen, which gives us a reference point.

If titres are elevated and there is a history of flu-like onset (or symptoms) and the S.H.I.N.E.® protocol isn't adequately helping, or if the person is severely ill and showing strong signs of autonomic dysfunction (as is the case with the 25% of those with CFS/FMS), I consider a trial of antivirals and use the labs to then decide which antiviral to use. If CMV IgG or HHV-6 IgG are over 4 (or 1:640 or higher), I go with the valcyte. If not, I treat with Valtrex 1 gm 3-4x day or Famvir 750 gm 3x day for 6 months. I also add Celebrex for it's antiviral effect (as long as their stomach is OK with it) along with ProBoost™ 3x day (under the tongue) and Zinc 20 mg a day. I give all these for 6 months, and continue beyond as long as their condition continues to improve and worsens if stopped. Improvement is usually seen at 4 months (though often sooner). Some peoples' symptoms may initially worsen on treatment. This is called a herxheimer reaction. These folks are still most likely to improve over time, though they may need to start with much lower doses.

A large number of people also show immune dysfunction in the form of low IgG 3 or IgG1 antibody levels. In a small subset of the sickest of these people, especially those with autonomic dysfunction or a painful condition called small fiber neuropathy (common in FMS), IV gamma globulin can show marked benefit after 4 months. IV gamma globulin is expensive and needs to be insurance approved, which takes a lot of work. A simple quiz (validated in the Mayo Clinic Journal) to find if you have symptoms of orthostatic intolerance can help you determine if you may have autonomic dysfunction (OI is caused by autonomic dysfunction).

I know this is a complex discussion, but I believe it will be helpful to many of you (and your physicians). I consult with people worldwide on CFS and fibromyalgia, and if your doctor is interested and open, I'm happy to work with them as well.

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