If you’re not familiar with the Robert Frost poem, here you go.
One of the things that keeps me up at night (who am I kidding; everything keeps me up at night, from sugar to licorice to antifungal cream) is worrying about my treatment plan.
As you might expect for an illness that has long had no known etiology, there are a great many treatment approaches. You can take a laundry list of supplements, prescriptions, and custom gels from Cheney, to different laundry lists of supplements and prescriptions from many others, to years-long courses of prescription antiviral medications from Lerner. Nobody has a cure yet, and how do you know what’ll benefit you most? We picked Cheney because he was within geographic reach and of stellar reputation, but I still worry about whether I’m on the best possible treatment for me.
Of the choices listed above, it’s that last set – the antiviral prescription medications – that are usually the source of my worry. While a Plain Old Virus is not likely the cause of the illness, there are a number of viruses that are known to be reactivated in people with it. And thus, some people do better with antiviral therapy. Cheney has me on a few supplements – artesunate, wormwood, and inosine – that have antiviral effects. But I worry that maybe I should be using the big guns. I know a ME/CFS blogger who’s doing better on antivirals – and I wonder whether I would be doing better on them too.
Secondly, Cheney, at this point, will not prescribe antiretrovirals. He believes that they’re dangerous for people as sick as his patients, and that long-term treatment with them will be problematic for us. But again, I know one ME/CFS blogger who’s doing markedly better on them, seems to be tolerating them fine, and claims that before treatment she was a KPS 40. I’m a KPS 40. She’s now flying back and forth across the country as the new director of clinical services for the WPI. I, you might have noticed, am not flying anywhere.
I also worry that as time goes on, the damage the disease is wreaking will be more and more intractable, and the benefit I could get from treatment will be less and less. But I keep trying to reassure myself (and Chimp does too) that there are a lot of irons in the fire, and there’s one particular great hope on the horizon: GcMAF.
Kenny de Merlier is using it with his ME/CFS patients in Belgium, and apparently having very good results, with almost all patients responding positively. There are some hoops to jump to get me on it. We will have to pay for the phlebotomists to come out and do blood draws repeatedly. The pre-tests will require fourteen tubes, which is challenging, because I can only get three or four out before I start to get shaky and faint. There will be routine blood tests once a month while I’m on it, and a repeat of the pre-tests at the end of 24 weeks. Before I can start it, though, I have to go to Asheville for a baseline appointment with Cheney, which, as you can probably imagine, is pretty taxing and several thousand dollars to boot, with little of it covered by insurance. Then we will order the GcMAF from Belgium, and a 24-week supply, which is the first course of treatment, will cost about $3,000. Then at the end of the 24 weeks, I will have to go to Asheville to see Dr. Cheney again for a follow-up visit. You probably see now where all my disability income – and more – is going.
But great things seem to be happening in Belgium, and this certainly seems like something that could help. It won’t cure me, but it might give me better function. And to go from bedridden to merely housebound would be a dream come true – it’s something I never thought would happen for me.