Posted 5/11/2015 3:02 PM (GMT -6)
I don't think that he's monolithic, as far as following KDM. In some situations, yes, others, no. I took Valtrex some years ago, but that seemed to be fairly mild, with few side effects. Dr. Enlander will administer Valcyte, which is much stronger, based on a high HHV6 titer. Dr. Levine prescribed me Amantadine when I was first diagnosed, many years ago, and that was so soon into the illness it's hard to say whether or not it did any good (and whether it could have). My understanding of this illness on the immune side (not even getting into neurological or other issues) is that there is a seemingly rotating number of pathogens that wax and wane. I have blood work done every year. And every year, there are pathogens that show high titers, and others that are within range. And they are different every year. For instance, one year I might have high titers for HHV6 and Parvovirus, with most others within range. The next year, those are under control, while EBV and Mycoplasma are off the charts. It's a difficult puzzle to try to get them all under control at the same time; some aspects of his protocol I find extremely helpful, while others didn't seem to do much for me. But I'm a longtime patient and recommend him highly as someone who knows the disease as well as anyone. I have nothing negative to say about Dr. Levine, and she diagnosed me; I just think he's a better doctor. Ironically their offices are in the same neighborhood, mere blocks apart, while there are so few ME specialists on the planet.
What's helped me as much or more than anything else, is the MAF878 yogurt probiotic. He does use injectable GcMaf with some patients, but it's difficult to get a handle on Nagalese testing. The yogurt is not quite the same thing, so I'm not sure it should be thought of as GcMaf per se, but it has done something remarkable that nothing else I've tried in all the years was capable of: restoring my sleep. And with that, comes an uptick in strength and stamina. I wish I could say it has returned me to the point of being able to work, but that's not quite the case. Still, it's the biggest improvement I've ever had. Just an anecdote, but it helps to remember that there are a lot of things that we take and don't necessarily notice whether or not they are helpful--it's tough to measure. Sometimes the only way to have an understanding that something was helpful is to experience what happens after we stop a particular treatment. The MAF yogurt is a major exception. Of course, a high enough titer for HHV6 resulting in Valcyte treatment is likely capable of doing the same thing, as is Ampligen. In my experience, it's been the yogurt. But, like I said, just an anecdote.