to chronicle my experiences with mold avoidance / locations effect after making a radical change -- moving from downtown Seattle, WA to Bainbridge Island, WA because I do better with the location here (I would say it's a "5").
Here are some comments about the Locations Effect from Jamie Deckoff-Jones, M.D.:
I haven't posted in ten days, and I was on such a roll for a while that I'm getting mail asking if I'm OK. Actually, I seem to be on a slow uphill course again. My sleep is especially improved lately, sleeping all night and even dreaming. The truth is, I'm in Hawaii. I needed to come here for personal reasons, but my husband and I have managed to squeeze in some vacation, our first since New Year's 2003, when we were all still healthy, even me, relatively speaking. It's been three years since I've been to sea level. I live in Santa Fe, at 7500 feet of elevation. I am much less short of breath with exertion here and hiked in a half a mile to a waterfall yesterday, with no PEM. I am sitting on a stunning beach as I write this. I have even been able to swim a little. My husband is snorkeling. I get little pangs of sadness that I can't do it with him like I used to, but I am so happy that he can. It is amazing to me that I am here. I lived here when I was a young doctor and always imagined that I would return. I thought my life was over, but it is starting again. Who knows? Maybe the best is yet to come.
Since the science is progressing glacially, it is not possible for me to evaluate what antiretrovirals are doing for me now, having taken Viread and Isentress for more than 14 months. However, I am approaching 90% of function this week, still in Hawaii. I have been out every day, most of the day, for 12 days. I went snorkeling (a little). I have walked up some steep hills. I have had no PEM. Only very brief episodes of feeling sick, which are not severe and pass quickly. I am eating, sleeping, dreaming normally. I am not short of breath at rest, or even with reasonable exertion. I am very deconditioned, but feel like I can start a measured program to get back in shape. I am choosing upright and the usual energy calculation that runs through my head when I think about whether to get up or not isn't happening.
I do think it likely that this latest improvement has something to do with the change in altitude; I became polycythemic when I moved to Santa Fe, which is at 7500 feet. I could exercise and was never short of breath without appropriate exertion before that. It will be interesting to see how I do when I go home this week. It may be that going back up will be good too, due to epo which is anti-inflammatory. Athletes know that going up and down is the hot ticket. I've been thinking about transitioning to the islands since I left in 1981, but never seemed to be able to make it happen. Our son is finishing up the 11th grade, doing really well, and we are committed to keeping our home in Santa Fe at least until he graduates. But life is full of possibilities again beyond the bed and the couch. My life has improved immeasurably from the positive XMRV culture I received from VIP Dx a year ago January.
My improvement seems to be continuing, even at altitude. I had an episode six days ago that was probably a sugar reaction, not common for me anymore. I was sick for a couple of hours followed by a kind of sleep I call "coma". Other than that, I have been remarkably stable. The travel didn't cost me much at all. I went out for dinner with my husband last night and realized it was the first night out I've had in years where I just had fun without struggling at all, after working most of the day. No faking being all right or overlooking symptoms in order to appreciate the moment.
The mild hyperbaric treatments are wonderful for me. I feel great in the chamber, a little slowed after, then really good later on. Ali continues to be sensitive to odors and has stayed away from the chamber because of the new plastic smell. However, the fire burning in Arizona has made the air quality very poor here (in Santa Fe). The horizon is obscured by smoke and there is ash on the ground, though the fire is hundreds of miles away. It burns your eyes, nose and lungs. Yesterday she became short of breath and decided to use the concentrator with a well aired non-rebreather mask at 10L/min. After 20 minutes she felt much better. She repeated that treatment again last night before bed and slept much better than usual, something I notice after each treatment (I'm going in about 3 times/week). Since she tolerates the mask, she can wear it in the chamber and will be protected from any other smells inside the chamber itself. We are both grateful for something so safe that helps in such an immediate way.
I've returned to practice on the Big Island in Hawaii, because that's where my active license is, and because I love it there.
It was my 5th trip to Reno in 10 months. It was short, but the most stressful for me so far, maybe because it felt so important, though it was good stress, not bad, while it was happening. I felt "on", but not anxious or consciously uncomfortable. I returned home still feeling strong. The day after I got home to Santa Fe, the Las Conchas wildfire started, now the largest in the history of the state of NM, over 100,000 acres, threatening the town of Los Alamos and Los Alamos National Labs. The air quality has been extremely poor. Here is a picture taken from our house, the night the fire started. The smoke is pluming all over Santa Fe and environs, making the air quality unacceptable for people with pulmonary disease. Mitochondrial disease too, I'd bet.
Despite lots of oxygen, which helps everything during administration and for a while after, I've been in crash mode for six days now. First time I've gone down for more than a day since December, when I caught a cold after my second trip. No cold now; just CFS. I don't like to report bad news if it takes away hope, but my commitment is to reporting the truth. Sleep, always a sentinel symptom for me, was the first to go. Then pain, nausea and orthostatic intolerance have put a serious damper on things. Cognition is the last to go for me, thanking God for the not small favor. Clearly, I am still at risk, despite dramatic improvement over the last year.
I leave for Hawaii later this week to see patients, looking forward to sea level and clean air.
I went down for a while after I wrote the last blog. I was feeling poorly and it was coloring my outlook, so I didn't want to write anything I'd regret. I've been in Kapa'au, on the Big Island, for the last two weeks seeing patients and have felt noticeably better since I arrived. Pretty definite cause and effect. It'll be interesting to see if it lasts through a third week, when the benefit of the altitude change should be over; this is the first time I've stayed so long. I still think that altitude is a major factor for me. My CBC was normal before this trip, for the first time off AZT for 6 months, but also for the first time in years, because my Hct was above reference after my move to Santa Fe, and is now 41, with normal indices.