Thursday, October 1, 2009


Trying to figure out whether viruses are involved in my daughter’s illness is a nightmare. She came down with this neuro-immune illness following a virus. Her boyfriend also caught this virus; and, most surprisingly, he too has CFS/ME - about half speed. Dr. Enlander believes that CFS is a communicable illness, but not necessarily readily contagious.

Blood tests are done at various labs to determine antibody response to specific viruses. The usual suspects in CFS/ME are CMV, EBV, HHV 6, Parvo 19 and Coxsackie B. (The Whittemore-Peterson Institute is about to announce a novel virus previously unconnected to CFS. This virus is named XMRV. My guess is that something should be published in Science magazine this month.)

There is speculation that many viruses are present in CFS patients. Soon a virachip will be available that will indicate what viruses are in a particular person.

Many doctors and researchers for many years have tried to “read” antibody titers to determine viral cause, or activity, or reactivity. It all makes for unsatisfactory investigation (by me), as the evidence is so conflicting. The connection between viral titers (numbers) and what is actually happening in the body is sketchy. Certain CFS doctors are looking for high titers as an indication of active viral infection (or reactivation). They are trying to determine a correspondence between illness severity and elevation of titers. For instance, Dr.Susan Levine will casually look at a bunch of test pages of my daughter, and in her offhand way she will put her finger on the elevated titers to EBV VCA IgG and suggest maybe that this is meaningful. It is a good guess but it remains just that, a guess. My daughter has had readings of 1280:1 IgG EBV VCA for years and they stay the same - high and they do not fluctuate. Some people believe that consistent high IgG titers over time is indicative of an active infection.

To get his feeling about EBV titers, I spoke to Dr. A. Martin Lerner in UK a year ago. He said flat out that the IgG titers for EBV "are worthless". Instead he uses an ARUP Diasorin test for EBV VCA IgM titers. Just by chance, my daughter been doing this test for about four years; and she has never had an elevated IgM (although her IgG is consistently elevated). Often an elevated early antigen (EA) test for EBV is seen as the best indication of active involvement. My daughter has gotten slightly elevated EA EBV titers at one particular lab (Focus) but not at others. (It seems to me that Focus labs returns higher antibody results than other labs, much like Igenex gets higher lyme antibody readings than MDlabs or Labcorp. So if you are looking for higher titers...)

My conclusion of all this is simple. There is no way to determine EBV involvement other than take antivirals and see what happens.

HHV6 is even more distressing to diagnose. The HHV6 Foundation has a website with a good message board for antivirals against HHV6.

Dr Jose Montoya at Stanford, who is now working closely with Dr A. Martin Lerner, has also pursued a correlation between antibody titers and illness, particular trying to establish a certain level of titer to indicate potential success in treatment. He gives Valcyte to patients who have titers to HHV6 IgG over 640:1 and to EBV IgG over 1280:1. He sees this as the best approach. (My daughter had 640:1 to HHV6 in 2007 and then 160:1 the next. In between she started taking Isoprinosine. So far the Montoya Valcyte trials have had uncertain results. At some point a more extensive report will be issued, but it has been over a year now since his preliminary report in June 2008. All this is immensely speculative and so far no certainty lies in any direction. Lerner has the best record and documents for treatment of CFS/ME with antivirals. Anyone wanting to have direction in antiviral therapy and CFS might want to think about traveling to Dr. Lerner. Dr. Enlander also has a heightened interest in HHV6, and treatment with Valcyte.

My daughter also has elevated Coxsackie B antibodies. Coxsackie B is an enterovirus - as opposed to a herpes virus. Years ago Cox B was thought to be closely attached to CFS, but no serious correlation could be established. From what I understand, many healthy people have high titers to coxsackie B. Dr. John Chia deals mostly with enteroviruses. He uses the Coxsackie antibody tests at ARUP, an AB by neuralization test. He also does more conclusive testing with a stomach biopsy. The treatment that he uses is Oxymatrine, a Chinese herb, produced now in the U.S. as Equilibrant. Dr. Chia says that 53% of his enterovirus patients show improvement on Oxymatrine. There is a Enterovirus website that discusses this subset of CFS/ME. Dr Chia has an interview about Oxymatrine on Cort Johnson's blog.

The battle goes on whether CFS/ME is a reactivation of a virus or an immune dysfunction or an interlocking of the two.

Cheney himself has given up chasing after viruses. His approach is to deal with the symptoms of sleep and pain, and then to find the “control point” of this disease and attack that. His belief is that the control point is oxygen toxicity. He uses specific cell signaling factors to center the immune system. For viruses he uses Artesunate, a malaria drug that has broad anti-viral activity and a high tolerance rate. Much more about Cheney’s ideas can be garnered from the internet and from his websites – and

Currently CFS is being sub-sectioned into various compartments for particular treatments - but this remains speculative at the moment. The best ideas seem to be to straighten out the immune system through dealing with hormonal issues, gut dysbiosis, diet, sleep habits, resting and pacing, metals toxicity, mold poisoning, mitochondrial problems and using cell signaling factors (like Nexavir), immune regulators (like Isoprinosine and LDN) - and then judiciously adding in antivirals. These are the concepts that are followed by many CFS/ME doctors.

1 comment:

  1. I too have had fairly high Coxsackie B titers, and am currently trying Epivir in hopes that will help, as Oxymatrine didn't do much for me. Have you heard about anyone trying it? I can't seem to find much more than a mention of it as a treatment anywhere. (Not that I don't have faith in my doctor, I'm just curious about what to expect.)