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Back In The (Valcyte) Saddle Again

July 24, 2009

Well, we had quite a day!

So, Terri finished up her six months on Valcyte last week. We were thrilled when, at the 5 month mark, she suddenly had a small but noticeable rise in functioning, about 10%. This is the first sustainable 10% increase since we started all this treatment, over at least a year and a half. So, good news, right? Even though it was just 10%, we were happy with it, although disappointed that there wasn’t more improvement as other folks have had. Still, ten percent is ten percent, right?

So off we trundled to the doctor up in Santa Rosa to see what’s next. Overall, it’s hopeful news.

He said:

  • That since she had that improvement at 5 months, he actually wants her to go BACK on Valcyte for another three months, to see if we can get MORE improvement. He said sometimes it takes people 5 months to see improvements, and that it’s worth trying for another 3 months since her body is tolerating it (we say tolerating… but just barely!!). So… back we go on the Valcyte horse. It’s a bumpy ride but the doctor seemed very encouraged that she had some improvement. We can do it. Three more months!
  • In addition, she is going to start taking a small dose of beta-blockers to deal with the heart symptoms. He says that she definitely has POTS (postural orthostatic tachycardia syndrome) and that the beta blockers should help with the tachycardia and dizzy feelings. This would help a TON. So, we’re hopeful about that.
  • She is also going to do a two-week trial of this immune modulator that is experimental. We’re not sure how much it costs, but hopefully we can afford it since it’s pretty cutting-edge. Only one manufacturer in the US makes it, and there’s only about 5 doctors in the US who use it. We’ll know after two weeks if it’s working.
  • We asked about diet, since we were figuring that the next step for us at home would be to eliminate toxins, etc. We were looking at macrobiotic diet because of it’s high rate of success with cancer patients and other people with chronic conditions. He said that macro would be great, but that even better is a kind of raw-food diet (which he, himself, follows). Hmmmm. So, he’s going to send us information about it and we’ll see what it looks like. I figure it’s worth a try to see how we feel on it (of course I would do it with Terri). He said that some people have had really incredible recoveries from CFS (and other conditions) when they do this diet in conjunction with treatment. So, we’ll see. I’m curious and excited about it. Although a bit nervous. Well, we can ease into it, right? I feel okay about trying it since he actually follows it himself. He says it’s yummy and he’s seen some amazing results with patients on it. That kind of says it all. However, macrobiotic really appeals to me… so we shall see. I suppose any major change is hard and it’s best to just ease into things. Trying to keep an open mind here.

Various other bits of helpful information was exchanged, but those are the high points. Basically, he was encouraged, which in turn means that WE are encouraged.

So… either macrobiotic or mostly-raw. I sense a giant change in our eating habits sooner than later. You know what this means, right? Eat brownies while we still can!!

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