I felt particularly sick for a long time before our trek out west from New Jersey– woozy and aching and listless – and liable to crash miserably after almost anything, like unloading the dishwasher or washing and blow-drying my hair.
Maybe, as my husband hypothesized, anticipation of the trip was stressing me out. But I saw another possibility. I’d been on Imunovir for almost two years, and the antiviral Famvir for months. When Dr. Rey explained that my early misery after starting Famvir was the usual die-off, I felt encouraged, and I know that anti-virals take a long time to show good results – but here, on the verge of a long trip, I feared I was too weak for the Tucson- by-car and then Hawaii-by-plane adventure/ordeal. I made a decision: Stop the meds and see what happens.
The result: I began to feel a bit stronger and less liable to crashes. And then I thought, goodness, I’m 70 years old and have been fighting this disease for 15 years, which, I know, isn’t that long when compared to others.
Yet, at 70, how much time do I have to experiment with treatments? And what’s the point of experiencing the side effects of medication with the view to a later recovery (whether partial or full – which would be at this point a miracle of biblical proportions). I’m already an old lady.
How many years of “wellness” will elixers and potions and prescriptions offer me, after pummeling me with die-offs and other side effects?
Would I be better off just “leaving well-enough alone”?
I’ve been off the meds now for almost 6 weeks, and feeling just about the same level of illness as after I first stopped. I still have discouraging crashes with too much activity and have to work hard at resting and pacing myself. (Isn’t that an oxymoron: “work hard at resting” ?) I don’t feel, however, as if some poison is snaking through my veins looking to wreak havoc.
Of course, I’ve started and stopped so many other treatments, and by now I’ve lost perspective and the energy to tolerate difficulties. I’m tired of trying to figure thing out when there are always so many variables. I believe I stayed on each past treatment long enough for a fair trial. But who knows? Do Imunovir and Famvir really offer another possibility I’m giving up on prematurely? But, like I keep saying, I’m 70 years old. That’s pretty mature. In fact, it’s verging on postmature.
By nature, though, it’s hard for me to do nothing. I still read and wonder about the variety of approaches out there, like Rituximab and Methylation and the Paleo diet. (Just listing even these few sets my brain spinning.) I’m really interested in the possibilities of HealthClick, as described by Cort and Joey Tuan. I’d love to connect with other postmature sufferers of ME/CFS and find out how much they are still invested in trying new treatments. Anyone out there 65+ in a similar situation?
I have my yearly appointment with Dr. Rey in the summer. I brought my meds with me to Tucson. Maybe at some point I’ll decide to return to my Imunovir and Famvir cocktail, concluding that I’m not better enough free of them. In 2013, after a year of Imunovir, my immune system labs were no better, and my HHV6 levels were still high, which is why she added the Famvir. Maybe I’ll give it another chance and see if the labs improve in 2014.
I will keep following the procedures and (hopefully) progress of the (controversial) Institute of Medicine contract to determine diagnostic criteria, as well as the new and continuing research that seems to have blossomed after the XMRV controversy. I’m heartened by reports of various new findings and approaches. But then I ask, who am I fooling? How much can breakthroughs really help a 70 year old who’s been ill for 15 years?
At the age of 55, I was conditioned by a lifetime of good health to assume that good health would return after the illness that followed the flu shot; it never dawned on me to think otherwise. Now, in the same way, I’ve been conditioned by 15 years of ME/CFS and all the futile treatments to believe, with the same confidence, that anything I try will result in basic failure. Up until now, I’ve always talked myself out of that pessimism; note how I’ve been dragging myself (and my husband) to Florida to see Doctors Klimas and Rey. But then the realization came with a startle: I’m 70 years old!
I’m not going to stop learning and wondering, and I love that there is hope for younger ME/CFS sufferers. Whether I actually try anything else, after all my previous attempts, depends on many factors – mostly involving side effects, both long and short term, cost, and the need for travel. Right now I’m holding onto a tenuous but familiar relapse/recovery cycle (I’m writing this from my bed just starting to perk up a bit after a recent relapse) that I’m not sure I’m ready or willing to tinker with.