Still going uphill. Ali has surpassed me physically, to my great joy. There are moments when we both find it hard to contain the new found energy. We are also each having our own difficulties reintegrating into life again. There has been so much lost; in moments it is very hard to come to terms with where we are now, rather than dwelling on what might have been. But I can tell you with certainty that all of these lazy, crazy, faking patients will get up at the first possible moment with a burning desire to do something, anything that has a positive effect on the world. Nobody wants to be a burden. I can remember a time, not so long ago, when I thought that my husband would be better off if I died. It is going to be breathtaking to behold so many chronically ill people recover, whether it’s now with these three drugs, which I think is likely to be the case for at least some patients, or a little later, when the drug companies finally get to work on it.
The disease is a relapsing, remitting process on it’s own. Many people who get sick for the first time, get well within a year or two. However, it is rare for patients who have been sick for several years unremittingly, to get better enough to return to nearly full function. We are both now over 80 KPS points; we were at about 40 points when we quit Lyme treatment a year ago and at about 50 points when we started HAART 6 months ago. (Karnofsky performance status). It is unlikely that we are some kind of rare exceptions. We are the only patients I know of so far on three drugs for any length of time (since May). There are a few who have been taking one or two drugs for several months who are somewhat better or not better. There is a single case report on this blog of a teenager who is much better on two drugs (comments in HAART post of Aug 22). I encourage anyone else trying antiretrovirals to get in touch with me or share here.
I read things suggesting that we are the tip of the iceberg, but as far as I can tell, we are only a small handful of people. Only a very few doctors brave and compassionate enough to help. There’s an attitude that these patients don’t die, so what’s the hurry? It took fifteen years with HIV, so everyone should be patient now. But since something has been learned in the last twenty-five years, it seems to me that this time, all that experience could be brought to bear to speed up the process a bit.
I just watched a YouTube video of Dr. John Coffin at the XMRV conference yesterday, expressing his opinions about off-label use of antiretrovirals. The only thing that he said of importance was that the disease remits on it’s own, but that only makes clinical trials all the more pressing, so that we don’t rely on anecdotes. Now! Not in a couple of years when the scientists say that they have proven causation. The patients are so willing to be part of the experiment, trapped in purgatory. But the scientists are worried. Don’t mean to single out Dr. Coffin; he’s in good company. But what a bunch of fuddy duddies, practicing medicine without licenses. And their basis for opinion is what? Wish they could all spend a few hours in a CFS body. Bet they’d take a few pills and see what happens. Spend a day living with the agony of a child you can’t help, can’t comfort. It’s intolerable. So many people. While these scientists pontificate. It’s an emergency!
It’s amazing to me how respectful the patients are as a whole. There is a certain wisdom and acceptance of reality not seen in most patient groups. Nobody expects a thing. It’s been too long. We’ve become too patient. No one knows better than I do the meaning of the word can’t. It will be incumbent on those of us who recover some measure of function to fight for the others.
Tonight is the WPI fundraiser. Please donate whatever you can.