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Post by Lisa Petrison on Jul 24, 2011 8:48:14 GMT -5
Everyone, please include the Lake Tahoe/Truckee area in the Nevada section.
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MIXED
I’ve mostly tent or RV camped here, during the past three years. I visited California a number of times prior to that, but am not including those reports.
DEATH VALLEY: EXCELLENT (5)
I’ve been to Death Valley National Park a number of times during 2009-2011. The air quality is consistently terrific, and it’s really gorgeous with nice hiking.
Death Valley is about two hours from Las Vegas. The nearest town is Pahrump, Nevada -- about an hour away.
This is the lowest altitude in North America (-180 feet). Although tourists from other countries visit there (briefly) in summer, the camping season is October through early June.
Furnace Creek is the central part of Death Valley. The complex includes a couple of restaurants and a small general store, along with a very nice inn (it feels good to me) and a motel.
There are a several nice campgrounds in Death Valley, though the only one with electricity are a few RV spots at the park at Stovepipe Wells (about 40 minutes north of Furnace Creek). Campers can use the pool (mineral water, good temperature) and its showers for a fee. A small golf course is also on the property.
In spring 2011, I was able to get Verizon cell phone service but not 3G service. Internet access is available but expensive (about $10/day). It’s possible to sit on benches in front of the general store or restaurants to charge computers or other electronic devices.
Scotty’s Castle is an old mansion that is worth seeing, in DVNP about an hour from Furnace Creek. It felt good to me in the main level and in the cellar. The visitors’ center in the building next to it felt problematic to me, though.
Tecopa is a hot springs town about an hour outside Death Valley National Park. The water there is the most detoxifying I’ve ever experienced. There are sewer ponds there that periodically act up with the worst toxin for me in the winter though, and many mosquitos and horse flies from mid-May onwards. Delights Hot Springs has private baths and an RV park. Tecopa Hot Springs is a BLM facility that has tent and RV camping (some with electricity) and separate communal baths for men and women. Tecopa Hot Springs Spa also has tent and RV camping, but their baths are moldy. Tecopa Palms is another RV park.
Also in Tecopa is the China Ranch date farm, which is a pleasant place to visit. Shoshone (near Tecopa) is a tiny town with a couple of restaurants. Unfortunately, on my last visit, the general store had a lot of mold growing in it.
PALM SPRINGS: GOOD (4)
I spent Spring 2011 in the Palm Springs area and liked it a lot. The air quality in Palm Springs felt okay to me, and in Desert Hot Springs (which gets a lot of wind) it a bit better.
I also spent Winter 2011/2012 in Desert Hot Springs. Like most places, the air was worse in the winter than the rest of the year. However, except when the wind was blowing hard from the NW, I did not find any of the worst toxin for me here, and in general (compared to other winter options in the contiguous U.S.) it wasn't too bad.
This is not pristine wilderness air, but for this sort of cosmopolitan location it’s about the best I’ve found.
Palm Springs and the adjoining cities have lots of restaurants, shopping and activities.
Desert Hot Springs is a spa town, with great mineral water and more than a dozen spa establishments in different price ranges. (4-GOOD)
Joshua Tree is about 45 minutes from Palm Springs and felt great to me. On the drive there, Yucca Valley (with a Starbucks) and Twenty Nine Palms felt really terrific. (5-EXCELLENT)
BARSTOW (AND SURROUNDING AREA): EXCELLENT (5)
Barstow is noteworthy because it’s about halfway between Las Vegas and Los Angeles, and the KOA makes a good stopover. The Calico Ghost Town was a little interesting (with a surprisingly good restaurant), though their RV park looked pretty crowded. There’s also outlet shopping here.
As towns go, this one felt good. The other towns in this part of California (Needles, Ludlow, Mojave, Baker) all feel good as well.
I last visited Barstow in March 2011.
I spent the night in Needles in November 2011 and thought it was terrific.
MOJAVE NATIONAL PRESERVE: EXCELLENT (5)
I spent a couple of nights at the campground here in April 2009. It felt really good to me, except for an area that had recently experienced some forest fires. I didn’t run into any of the worst toxin for me. It’s pretty, in a stark desert sort of way.
LOS ANGELES AREA: FAIR (3)
I drove from Barstow to Los Angeles and spent the day in Newport Beach in March 2011. In my opinion, the air started to feel worse at about Apple Valley.
Newport Beach felt pretty reasonable, and better right along the beach with ocean breezes. (Mike Dessin, who is "mostly recovered" from very severe CFS and who seems to have a knack for finding good air, was spending the winter at a house a few doors down from the beach.) I didn’t hit any of the worst toxin for me on that trip. (4-GOOD)
Another good microclimate in the L.A. metropolitan area is Loma Linda, which is a town up on a hill. Loma Linda was cited as a "Blue Zone" (a town where people live a long time), with the authors suggesting that the residents' diet is responsible. I think the air quality also has something to do with it. I visited here in January 2012. (4-GOOD)
I visited downtown L.A. on a sunny day in May 2012 and did reasonably okay there, though it conceivably could be worse at other times of the year. It was quite polluted there, of course. (3-FAIR)
On my visit, I went to the Ahmanson Theater. It seemed moderately problematic in terms of mold but not horrific.
In May 2012, I got lost and drove around Pasadena one afternoon. It did not feel good to me, and I would be hesitant to return. (2-POOR, possibly worse)
Also in May 2012, I stayed at the KOA in Acton, north of L.A. This is not a very charming area, but I felt okay there. (4-GOOD)
SAN JOQUIN VALLEY: MIXED
I spent about a month in this region in June 2009 and some additional time in Summer 2012. Despite its being an agricultural area (mostly fruit trees), I have felt really good in much of this area.
In 2009, Sequoia National Park felt generally very good, but I ran into small scattered amounts of the worst toxin for me near the hotel up in the mountains. The national park campground nearby and the one at the base of the mountains both felt good to me. (4-GOOD)
In 2009, the RV parks and campgrounds I encountered in Sequoia National Forest felt great. (5-EXCELLENT)
Visalia and Three Rivers felt good in 2009, as towns go. (4-GOOD)
Los Banos felt excellent in 2009. (5-EXCELLENT)
Bakersfield and the surrounding area felt problematic as I drove through it in both 2009 and 2012. (2-POOR)
Hollister generally has felt okay to me, in 2009 and 2012. (4-GOOD) There is a good Starbucks there, and the China Garden restaurant felt good. Cafe Ella unfortunately felt problematic.
MERCEY HOT SPRINGS: 5 (EXCELLENT)
I spent a lot of time at Mercey Hot Springs, which has some campsites and RV spots. This also is located in the San Joaquim Valley. It’s very lovely, though the sulfur water may not be tolerable for some people. The nearest town is Los Banos (45 minutes away).
J-1, going from Mercey to Hollister, felt problematic to me on two different occasions in 2012. (1-AWFUL) I would be more inclined to take I-5 and 156. (The restaurant at Casa de Fruta on 156 felt okay, not great, to me.)
CALIFORNIA COAST: MIXED
I drove from Mercey Hot Springs to the coast of California on day trips a few times in June 2009.
San Simeon, where Hearst Castle is, felt terrific. The mansion itself was fine except for the media room, and well worth a visit. (Note that buses must be taken from the parking lot to the mansion.) (5-EXCELLENT)
Carmel felt fantastic to me. (5-EXCELLENT)
Paso Robles and San Luis Obispo both felt okay. (4-GOOD)
Morro Bay was tolerable. (3-FAIR)
Monterey felt problematic driving through, and I didn’t stop. (2-POOR)
I drove all through Big Sur, which was a mistake. The beaches I visited felt terrific, but the forest campgrounds felt especially problematic. There had been forest fires here the year before. What I ran into wasn’t the worst toxin for me, but I nonetheless would not plan to stay in this area. (2-POOR)
MAMMOTH LAKES AREA: EXCELLENT (5)
In October 2009, I drove down from Bridgeport to Big Pine, then cut over into Nevada. At the northern part, near the ski areas and the entrance to Yosemite, I felt small traces of the worst toxin for me. Otherwise it felt terrific.
The Ancient Bristlecone Pine Forest is very high in the mountains and may be the best place I’ve ever been. There’s a campground there, but it was too cold for me to stay overnight. I want to go back.
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Post by wigwam on Jul 28, 2011 13:01:48 GMT -5
PALM SPRINGS: GOOD (4) - The air felt clear to me. My energy was good. Noticed no 'ick' here except around golf courses. CARMEL: POOR (2) problems with noise drove me to check out of B&B and drive into the state forest. BIG SUR: Driving through , The beaches I visited felt terrific, (5 EXCELLENT). the state forest and camping shelters felt (1)AWFUL. I wish I'd had the funds to stay at POST RANCH: where I felt (5) EXCELLENT. Read more: locationseffect.proboards.com/index.cgi?board=us&action=display&thread=4#ixzz1TQKAsvEA
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polbe
New Member
Posts: 26
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Post by polbe on Sept 8, 2011 20:15:55 GMT -5
I was in San Diego in January 2001 and in Calexico/Mexicali (twin cities in the desert on the California/Mexico border) from January until August 2001. I felt "so-so" at first, but then fell back to being a "2". Mexicali in the summer had the highest temperature I'd ever experienced. It went up to 47C / 117F. Winters were brisk. My guess was that I was too far from the equator to be well.
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terik
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Post by terik on Sept 10, 2011 18:17:19 GMT -5
I live in Sacramento area, I have a feeling this is a bad area. I have Lyme so I don't know to what extent mold might be an issue for me. I'm pretty sure there's a fair bit of mold in my home, but I don't know what the air is like. I may have a chance to get out of here if my BF (who currently lives in Chicago, I live with my parents because I have to have constant caregiving and no one else has offered to help me) transfers to San Fransisco office for his work. We would not be living IN the city though. Still, I hear cities are bad. I'm extremely disabled and have a child, we don't have any connections to getting out of here as of yet...
Reports on Northern California would be well appreciated though.
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Post by Lisa Petrison on Sept 12, 2011 6:14:15 GMT -5
Erik Johnson has spent a lot of time traveling throughout the northern California area. Unfortunately, he has been preoccupied recently and not spending much time on the Internet, and so thus far has not contributed his experiences directly to this board.
Here are some comments that he made about the area, from the ebook that I compiled of his previous writings. I haven't heard from him that any of these places have improved recently, and I think he would have told me if that had occurred.
Best, Lisa
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I used to live in San Anselmo, in a place that made me sick. Rainiest, darkest, miserablest, mossiest and moldiest area I ever lived.
SA, Ross and Kentfield get the heaviest rainfall totals of anywhere in the Bay Area. Spore plumes rampant everywhere you go. Very difficult place to recover, even if you do manage to find a safe house.
East Bay is better, but there are some ferocious plumes in Berserkely to watch out for.
-Erik (2006, SickBuildings)
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I used to live directly on the ocean, just about dead center of this picture.
This was my hang gliding class at Dillon Beach.
Of course, if the wind is blowing off the ocean, there can't be any mold.
But if I went up to the store at Lawson’s Landing, I was in the midst of houses. If they were moldy houses, as is very common on the coast, I was in the midst of mold.
So, yeah, right on the coast is good, just as long as there aren't any moldy places upwind.
If I weren’t constrained by financial considerations and had latitude to travel, I'd do my best to get out of the snow entirely. Cold weather is like a trap for Moldies.
Too cross contaminated and sick to stay inside.... too cold to crawl outside.
It is so much easier to deal with if you can get outside in the winter.
Although I didn't feel too well downwind of certain cities, the Southwest felt very good to me when I was moving a friend down to Texas a few years ago.
-Erik (2008, Email)
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If I had my druthers for a winter retreat, think I'd head for the Southwest. Arizona, Utah, southern Nevada.
But most of the low-population areas along the coast have been pretty good too. Big Sur was awesome.
Monterey and Morro Bay were killers. San Francisco.... well, ya just gotta get through as quick as you can.
North Bay, not so good until up past San Rafael.
-Erik (2008, Email)
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Don't even think about San Francisco.
Mongo plumes running around the Bay Area. Used to be a real whack just south of Gilman, but north of University, in Berkeley.
Sacramento is bad, bad, bad. Ugh. There are plenty of places around there, like the Pony Express museum, Old Town and the KOA near the turn-off for Business 80 that made me turn and run. Too many stray plumes.
-Erik (2008, CFSU)
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Today, a local DJ described Death Valley as a "Feel Good Place" where somehow, for some reason, it just feels good out there.
Yaz-indeedy! And if there are any ticks out there, at least they're frying their little butts off while they try to get at you.
-Erik (2008, CFSU)
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Morro Bay was an absolute nightmare for me. All parts of town to the south of Morro Rock were death defying. There is a campground next to the golf course and museum that I stayed at for two nights because the group I was with liked it there, but I could feel within minutes that the place was really bad. I won't be going back.
-Erik (2009, Email)
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I used to love Santa Cruz, and now I fear it. Within the last twenty years, the whole area has gone sour.
If you want a good blast of the “bad stuff,” go down the the kayak shop at the entrance to the marina. I parked next to the place and within thirty seconds, I was fumbling to get my rig started as quickly as possible to get the hell out of there.
I am growing increasingly concerned about all of southern California. The last time I drove down that direction, I was amazed at how many more plumes I encountered than just a few years previously.
-Erik (2009, Locations)
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If you go to Sacramento and get much worse, it would still be a confirmation of the basic concept that "locations" are a major factor.
It would just be a confirmation that goes in an undesired direction, for the patient.
From a scientific perspective, it is still a valuable "test."
I cannot recommend any area around Sacramento. The place is rampant.
-Erik (2008, Email)
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During the Incline Village "mystery malady" problem, I stumbled over a very peculiar thing. Certain locations would make my heart go wild. I learned, painfully, to avoid those locations, and it really paid off.
As I became more skilled at detecting these locations, I remembered that I had been similarly affected in a number of places down in the Bay Area. Mountain View/ Sunnyvale was among them.
-Erik (2011, Facebook)
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Post by NewPoster123 on Sept 22, 2011 14:45:07 GMT -5
I am sensitive to mold, chemicals, and humidity.
SF BAY AREA: Overall- Excellent (5)
Millbrae- Good (4)
Belmont- Fair (3)
San Mateo- Excellent (5)
Los Altos- Excellent (5)
Palo Alto- Excellent (5)
SANTA ROSA AREA: Overall- Good (4)
Cotati- Good (4)
Santa Rosa- Good (4)
SAN JOAQUIN VALLEY: Overall- Horrible (1)
Tracy- Horrible (1- or 0.)
Manteca- Horrible (1)
Modesto- Horrible (1)
Stockton- Poor (2)
SANTA CRUZ AREA: Overall- Good (4)
Aptos- Good (4)
Santa Cruz- Good (4)
GOLD COUNTRY: Overall- Good (4)
Tain Hart- Excellent (5)
Sonora- Good (4)
YOLO COUNTY- Fair (3)
Sacramento- Poor (2)
Davis- Fair (3)
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Post by Lisa Petrison on Nov 13, 2011 9:33:31 GMT -5
Here are some comments about Death Valley from "Poker Player," who lives in Seattle, on the Phoenix Rising board: >Hey so I got back from Death valley. Turns out it is pretty cold there. Camping was not fun at all. With wind it got to be 34 degrees, that alone was hard enough on the immune system. >I would say that the desert was about half as good for me as hawaii is. I got very good brain clearing, and my energy levels were much higher. However, I still got post exertional worsening of symptoms, and my hot achey legs and prostatitis remained as bad as ever. >Overall, I am glad I took the trip, as it confirms that location does play a big role in my illness. I am a little upset that it was so cold, and that I did not get an extended stay as I heard sometimes people may feel worse when they are in a completely zero mold locations at first because their body is "detoxing". I did feel much different. I had energy and my brain fog was a lot clearer, but my heart was palpitating and my pulse was high and I had insomnia where I couldn't sleep more than 4 hours. Actually, it was pretty similar to how I felt 2 years ago when I just started to have symptoms of this illness. And then a few hours later, PP wrote: >Oh my gosh. I am back in Seattle and I have to comment on how remarkably quickly I forgot how TERRIBLE I feel here! Yesterday I was playing catch with a friend in a park in Las Vegas. I was running around and doing fine for 30 minutes. Today I am in Seattle and it feels like a 100 pound weight has been strapped to my back, my muscles are sore and weak at rest, and I feel out of breathe at rest for no reason. >This is all typical, as I felt like this before I left and it is the reason I left. >Oh yeah, also I took methyl b12 again while on my trip to the desert and it helped calm my nervous system a lot. My body can't handle it in Seattle and it actually makes me feel worse now. forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii/page6
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Post by Lisa Petrison on Nov 14, 2011 9:07:33 GMT -5
Here is a report on Death Valley from "JMK," who is from Wheeling, WV: I am the ME/CFS patient from WV who recently went tent camping in Death Valley for 10 days. I am not suggesting that anyone else do this, just sharing my experience. I experienced a near full remission while there and went back to baseline upon returning home (before I entered my house). I am mostly housebound, meaning that I am able to leave my home for short periods of time, knowing that the more I do, the more time I will spend laid up in bed recovering. I am XMRV positive by virus culture per VIPdx. I have multiple reactivated viruses, low NKC function, OI, POTS, PEM, multiple endocrine abnormalities, cognitive difficulties, etc. While in DV, nearly all of my symptoms disappeared. No PEM. NONE. No POTS. No OI. My pain went from an 8 to a 2. Alcohol and sugar intolerance disappeared. My daily headaches disappeared. My ability to sweat and tan normally returned. I take a beta blocker for POTS symptoms. I forgot to take it on my second day in DV. That evening, I it dawned on me that I hadn't taken it. Since I had been hiking and swimming that day and had no POTS symptoms, I decided that I would not resume taking it (Bystolic) unless my symptoms returned. They did not. By the end of the week, I was hiking several miles a day, with no PEM and no POTS . Upon returning home (within 24 hours), my resting heart rate went back up to 140-150 bpm, palpitations returned, and shortness of breath with minimal exertion. This is a real phenomenon and desperately needs serious investigation by researchers. Patients deserve to know about this. If it were not for Incline Village survivor and CFS prototype Erik Johnson, this crucial information would have disappeared. Thankfully, he has chosen to keep talking about it for decades even though his words are mostly ignored or met with hostility.....because it's the right thing to do. Researchers and medical professionals have no right to ignore evidence. When you investigate something, you are supposed to consider ALL of the clues. It was beyond wonderful. My drastic improvement was shocking to me. The best I was hoping for was a small amount of relief of any kind. I was not expecting to feel normal or to be able to be so physically active. I didn't think it was possible to ever feel that good again. I do not think that lack of EMFs or chemicals are the reason I improved so much. I had tried something like this before in another very clear and pristine place and felt slightly better, but nothing near normal. The difference this time, was that I slept in a tent, rather than a room, and I took no contaminated possessions with me. Just to be clear, I am not trying to get everyone to do this. Also, I did not go alone. My husband came with me to help. There is no way that I could have made the trip by myself. Had I not improved so quickly and dramatically and I had been alone, it could have turned into a disaster. The desert (especially this time of year) is not the place to be if you are physically impaired and have no one to help you. Now that I am back home and feeling like horrible s*@% again, I am slowly trying to get my things into storage. Then, I plan on trying to find a decent spot in my area to tent camp to see if I improve. If that doesn't work, then I am planning on moving. There is no way that I can go back to this living hell now that I know there is a way out. I had forgotten what it felt like to feel good and I will do whatever I have to to get that back. www.mecfsforums.com/index.php/topic,7402.msg89216.html#msg89216 * She wrote elsewhere: "I've been hiking all day every day, swimming too, even squeezing in a little beer drinking. I can hardly believe it. I thought I'd never be able to do any of these things again."
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Post by Lisa Petrison on Nov 14, 2011 14:09:08 GMT -5
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Post by Lisa Petrison on Nov 14, 2011 14:11:58 GMT -5
A report from this database. Scale is 1-10. (0=worst possible, 10=completely healthy) health.groups.yahoo.com/group/CFS....eportRows&tbl=1From: BuffyWWJD Newport Beach Score: 8 Dry, warm climate. Few trees, lots of sunshine. Friendly people. I was my healthiest here.
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Post by Lisa Petrison on Nov 14, 2011 15:04:19 GMT -5
A report from this database. Scale is 1-10. (0=worst possible, 10=completely healthy) health.groups.yahoo.com/group/CFS....eportRows&tbl=1* From Tink Sacramento Score: 5 Climate: heat, air pollution is high, short winters long summers, we had many days over 100. Environment; comfortable houses with central air. Healthcare: I found the best healthcare here, many dr's had knowledge and experience in CFS/FMS.
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Post by Lisa Petrison on Nov 14, 2011 15:05:29 GMT -5
A report from this database. Scale is 1-10. (0=worst possible, 10=completely healthy) health.groups.yahoo.com/group/CFS....eportRows&tbl=1* Tink Marin County, Point Reyes Station Score: 8 Climate: Coastal climate, wam days and cool nights. Environment: lovely nice little town, with 60/70's laid-back atmosphere, lot of old hippies live in town. In the weekends pic-nics on the beach and making music. Healthcare: 2 wonderful dr's open to suggestion for treatment.
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Post by Lisa Petrison on Nov 14, 2011 15:21:32 GMT -5
A report:
So, since being ill, I've been a few places. Tahoe, Reno, Dallas, and the Bay Area (San Jose and San Francisco), and once we drove from the Bay Area to Portland, Oregon.
Now I can say that I felt better in the Bay Area out of all places I have been.
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Post by Lisa Petrison on Nov 14, 2011 15:31:20 GMT -5
A report from this database. Scale is 1-10. (0=worst possible, 10=completely healthy) health.groups.yahoo.com/group/CFS....eportRows&tbl=1* From cc San Diego Score: 3 (Worse than usual) The hot sun made me even more weak and tired. The red rash on my face flared often. Was there 2 months
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Post by Lisa Petrison on Nov 14, 2011 15:34:09 GMT -5
I have spent a good deal of time in Palm Springs and found a colonics therapist with fibromyalgia who got sick in a house with Stachy in San Diego.
Her house here is very good with regard to toxic mold.
She's pretty much wholly recovered, but relapses when she goes to the SF Bay Area or (especially in winter) San Diego.
She blames the damp climates, but says that the place that she feels the best is Hawaii.
Best, Lisa
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Post by Lisa Petrison on Nov 14, 2011 18:06:55 GMT -5
I've not been to the Bay Area since doing any sort of avoidance, so I can't give any really good assessment of it.
However, for almost a decade during my "active ME/CFS," I traveled to San Francisco once or twice a year to present at training seminars at a company there.
In general, I had an intuitive dislike of San Francisco. Other people always said how much they loved that city. There were plenty of good reasons that I should have enjoyed it, but I didn't like it at all.
It didn't have anything to do with the work, but just my intuitive feeling about the city. I've since concluded that these intuitive feelings corresponded really well to how problematic the environment turned out to be for me in terms of toxins.
However, on most of those trips to SF (which were just for two days), I didn't get really sick. I ran on adrenaline and did okay, then collapsed when I got back to my moldy home.
On the last trip, in 2007, I did extremely poorly. I was in very bad shape at that point anyway, but something very weird happened to me on that trip. I basically suddenly went nuts emotionally, plus my cognition suddenly stopped working. This had periodically happened to me before in other places, but never to this extreme degree. I ended up not being able to present at all, and barely made it back to Chicago.
Clearly, I think, I ran into a plume of the "worst toxin for me" on that trip. I'm not sure why I didn't feel it as much in San Francisco on previous trips. Perhaps my reactivity was much higher, or perhaps there are very strong plumes that emerge only sporadically. I tend to think that both of these factors were at play, based on what I know of the city and on my condition at the time.
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In Summer 1994, I paid a visit to UC Berkeley's campus. This was before I was exhibiting any signs of illness at all.
Walking around the campus, I felt a distinct sense of "spookiness," like the place was haunted. It was dusk, and I expected ghosts to pop out from behind the trees. I found it amazing to think that so many people I knew loved that school so much, because it really scared the s*** out of me. I couldn't wait to get away.
If I remember correctly, I got into an argument with my husband on the drive back to San Francisco. I continued to have that "spooked" feeling for a few more days afterward and kept reflecting on the experience. Eventually it seemed to go away, but then shortly after that I started to get the initial symptoms (lethargy, depression, cognitive slowing) that over the next 18 months converted into full-fledged ME/CFS.
That "spooked" feeling is one of the ones that alerts me to the presence of the "worst toxin for me," now. So I think that I did indeed get hit badly with it during my visit to Berkeley.
A peculiar number of people report visiting Lake Tahoe with nothing extraordinary happening just before getting sick with ME/CFS -- enough that I think it might be called the "Lake Tahoe Vacation Effect." So I'm thinking that I experienced a similar phenomenon in Berkeley. Could it be that I got so severely hit with that toxin that it did something to me permanently (e.g. had enough of an effect on my body that it opened me up to a full-fledged immune system collapse), even though all I got from it acutely was an odd emotional response?
I also had a series of three Hepatitis B shots that summer, so perhaps the blame for my descent into illness should be put on them. I'm thinking it likely was the combination.
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In the mid 1990s, after I was sick, I spent about a week in Napa Valley. It felt okay, not great.
Best, Lisa
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Post by Lisa Petrison on Nov 15, 2011 3:21:11 GMT -5
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Post by Lisa Petrison on Nov 15, 2011 11:30:32 GMT -5
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Post by Lisa Petrison on Nov 16, 2011 13:17:14 GMT -5
Janis reports on her experiences tent camping in Desert Hot Springs (near Palm Springs) in November 2011: Imagine feeling great when it’s cold outside. To warm up you get in the baths or the sauna. You sweat, you drink lots of water, you detox. You come out feeling warm and less toxic, and the effect lasts for several hours. If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm. You make dinner with a floodlight if the weather is clear. If rainy, you find a restaurant. After dinner, you walk down to the pools and sauna once again to combine detoxification with relaxation. After you disconnect the air [un]freshener in the public restroom, the smells no longer bother you. You climb into your tent and slip under down quilts and flannel sheets, fall asleep right away, and in the morning, wake feeling rested. It’s 6 am. You throw on a sweater or jacket and watch the rosy fingers of dawn lift the sun into the sky. In a short while, it’s warm enough to remove your jacket and replace your wool socks with flipflops. You heat water for breakfast tea on your Coleman stove, make eggs or hot cereal or gluten-free French toast, and still feel good enough after breakfast and clean-up to do something. You know you have CFS but you don’t feel sick. On the contrary, you feel strong and vigorous. It’s only when you do something more strenuous, taking a 1.4 mile hike through a nature preserve in the desert, that you experience your limitations. In the past, 1.4 miles would have flashed “DON’T WALK” in large red letters in your awareness. But since you’ve been feeling so good, you think you can handle it. It’s 7:30 am and still cool. The sky has filled with light gray clouds. The path has more downhill and uphill than you expected, and the desert sand is often as soft as the sand on a New Jersey beach. You tire when you reach your destination, lie down on a picnic bench for 20 minutes, and conserve your energy on the way back to the car by walking in silence. Still, after eating breakfast and going to the pools, you feel fine at the end of the day. PEM is no longer your shadow! * This has been my life for the past 10 days at Sam’s Family Spa in Desert Hot Springs. Sam’s is a nice place to park an RV, but not such a nice place to pitch a tent for those you like privacy and the feeling of being close to nature. But if you’re into mountain views, Sam’s has them a plenty: ranges to the north, south, east and west – with openings for the Coachella Valley’s I-10 to carry vehicles (and pollution) to and from Los Angeles. The air has the constant haze of pollution. Even in nearby Joshua Tree National Park, which extends many miles to the east of Desert Hot Springs, the ozone data from the various government agencies rank it as ‘moderate,’ one step below the level considered risky for the sick and elderly. I did well here physically, and found myself wanting to stay on as my strength and vigor increased. I didn’t react adversely to anything until the day it clouded up and some odor rose near the pools. The barometric pressure dropped. Lying out in the sun required wearing jeans and a shirt. On that day I felt tired and dozed off after lunch. I wondered why I was suddenly tired. An internet friend (Lisa) showed up at the place and we transformed our virtual Facebook friendship into something three-dimensional and material.. She came by the pools shortly after I awakened from my nap and asked “Did you feel anything different this afternoon?” “Yes,” I answered. “I suddenly felt so tired that I dozed off. This is the old CFS-ME me, not the new me who sleeps like a babe at night and no longer needs to nap.” “I think you felt the stuff I’ve been talking about. It’s not mold, but maybe something rising from the sewers that seems to come out at times in many locations. It’s not so bad here, but when it’s worse, I get an extreme reaction and almost immediately feel suicidal.” Interesting, I thought. David came by a little bit earlier and was full of negativity. He said it came on after he went into town. I wonder if he was also affected by the same energy even though he doesn’t have CFS. The next day, I was normal again, despite the constant drizzle of rain, some of which infiltrated the tent and leached into my clothing, causing me to wrinkle my nose as the wet patches in socks and slacks touched my warm skin. I walked over to find Lisa and soon forgot out them, perhaps a record for me in dealing with unpleasant temperature changes and weather. Amazing!!! I love feeling strong and vigorous, watching my body deal with all kinds of things that in the past would have sent me to bed with a sour face and whining voice. I’m happy, amazed, and sick of camping. cfsmethylation.blogspot.com/2011/11/strong-and-vigorous-or-weak-and.html
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Post by Lisa Petrison on Nov 16, 2011 16:56:30 GMT -5
Here is a report on Death Valley by mojoey: I agree with you that it's not just the latitude, even if that is a factor. I've gone back to Taiwan which is along the same latitude as HI and also an island, but I felt terrible there. I think it's a combination of sanitation, industrial development, chemical deployment, air quality, wind quality, warmth. I did not feel half as good in Death Valley as I did near a lake in Utah in the middle of fall. However, like you the lack of sleep (90s at night, chemical sensitivity to my trailer) played a big role in that. However, even when I finally was able to sleep in the desert (once there was electricity) I was still majorly reacting to the chemicals. I would like to try it out again with my new trailer or just tent camping, but I'm not convinced my core symptoms would go away. When I was at Deer Creek State Park in Utah, my gut, vision, brain all improved without a few hrs of arrival. However, over the course of 3 days, the OI and PEM didn't budge at all. forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii/page7
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Post by Lisa Petrison on Nov 18, 2011 11:56:30 GMT -5
A report: I found my CFS to become so much worse in NJ after I moved here from living in Newport Beach for 10 years. For me at least, the damp, humid, moldy, heavy pollen, and polluted environment here in NJ has weakened my system so much that I grow much weaker physically each year I am here. To the point I have been basically bedridden for the last seven years. I can't say for sure if I moved back to So. Calif. that I would be healed but I sure do believe that the dry, sunny, warm, no pollen, almost mold-free environment, along with all the very friendly, nice people there, would cause me to improve greatly. My allergies to mold, pollen, dust, chemicals in general, etc., make my CFS so much worse and they are all so prevalent here in NJ. Also, the grumpy, in-your-face, nasty personalities that are so prevelant here in NJ and the damp, rainy weather just make my life so much more difficult. Gotta an extra room? Wanna rent it out? I'm quiet (sleep most of the time), clean, nice, happy, a good roommate. I can't pay ya much but I can pay some each month for my rent. I hope you feel better! Are you near the beach? I always found a short or long walk along the surf of the waves to bring up my spirits and just make me feel better. Oh I miss the waves at the beach so much! And it was so wonderful to watch the sunset as it sank into the vast ocean. Oh my. Enjoy that wonderful part of the country! -Pam health.groups.yahoo.com/group/CFS_CFIDS_ME/message/970?l=1
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Post by Lisa Petrison on Nov 18, 2011 13:15:46 GMT -5
A report from 2003: Moving to southern Nevada has been a real help to me. My energy, mental clarity, etc. went up immediately. I have huge problems with mold; do poorly when after it rains or in more densely vegetated areas but this has been very good. A move from the Bay area in Calif to San Diego made me worse oddly enough, then from their to the So Cal deserts I had some improvements but where I really noticed the difference was in the rather bleak but beautiful landscapes of So Nevada. -Cort Johnson health.groups.yahoo.com/group/CFSFMExperimental/message/57952
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Post by Lisa Petrison on Nov 18, 2011 23:21:52 GMT -5
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Post by Lisa Petrison on Nov 19, 2011 0:51:30 GMT -5
A report from a CFS patient from Alberta, Canada (2003): I also had an incredible improvement in my health several years ago when my husband had a business meeting down in Palm Dessert, California, USA. Nobody could believe my improvement, since I usually was dragged along to these annual meetings (held in different locations in the United States) and slept the whole time in the hotel room. However, when I was in that desert sun I found that I was doing trail walks in the canyon. ...good grief, I hadn't exercised in years! When I was leaving at the airport I talked to a local and told her about my amazing improvement in my health. She told me that people will often come down to Palm Dessert all crippled up in wheel chairs and after just a few days in that desert sun they are walking around like most normal people. Unfortunately, just as soon as our plane was landing in Edmonton, Alberta, Canada all of my symptoms returned with a vengeance. We were all disappointed. My husband even said that he wished the company he works for could relocate to Palm Dessert for me. I wonder if they have any CFS/FM support groups in Palm Dessert? Interestingly, even locally, I always fair better in the summertime, than I do in the winter. This illness has been a long hard struggle. And after a decade of illness, I'm not sure that this illness can be turned around now. Anyway, that was why my experience in Palm Desert was a real dessert! ;-) LOL Because I was not expecting an improvement, I honestly don't know when I got better. It may have happened when I stepped off the plane. We came in very late at night and had a very long flight because of a lot of delays, so we were very exhausted and went immediately to our hotel room and slept. The next day, I was like a regular tourist. I was wanting to check out the sites. It took two days and then my husband repeatedly commented, "This is the girl that I married." Before my illness, we were both very active and involved in cycling, swimming, etc. Then I became sick and you know the rest of the story. So, to answer your question, I believe that my improvement was immediate. It did not take a few days to build up, or anything like that. In retrospect, I can't really say that I was cured because I still had bowel problems. I would be in flight enjoying my site seeing activities and would often have to make emergency landings (if you know what I mean ;-) . But the energy sure was there. In fact, for the first time since being sick I found that I was bored when my husband was at his meetings. Usually I am dragged along to these business meetings and I sleep all the time in the hotel room. But this time I was out and about and wanted very much to go site seeing, but was restricted because my husband was in meetings and wanted me to wait for him. I did spend a considerable amount of time out doors; however, I remember also seeking relief from the heat with the air conditioning. -Trudy health.groups.yahoo.com/group/CFS_CFIDS_ME/message/336?l=1
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Post by citychanger on Apr 28, 2012 16:54:26 GMT -5
Idyllwild, San Jacinto State Park - Poor (2) I stayed here for 1 night after hearing from another CFS patient she felt great here, and I just felt "off" the whole time I was there. PEM didn't come back (although it may have if I'd tried to do any aerobic exercise), but more joint pain where I haven't had it since I started avoidance, head felt swollen, hard to get up and move, and was insanely fatigued. Despite being above the LA pollution & in a pristine forest, not once did a deep breath feel refreshing. Felt better as soon as I left the mountain & hit the 10 freeway, despite the typically dense pollution.
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Post by JennP on May 4, 2012 10:39:48 GMT -5
We took route 8 from phoenix to san diego the whole way.
Parts of the desert felt ok. But I could tell when we were coming up on farming areas and cattle farms because I would start getting that sick feeling. It was either pesticides or toxic cow crap. I would suddenly get this pang of anxiety like we had to get through that stretch of road and sure enough we would drive by farms or see those cow farms or slaughterhouses. The worst town was jacumba. And there was an airport near there too.
The absolute worst part of the trip was driving through the mountains. That area had the strong pee smell and felt really really toxic. I was feeling those seizure type feelings and like my head was gonna explode, and tremors and POTS. Plus I think the swift altitude changes were affecting me also.
I was so looking forward to the beach but when we got there it smelled very strongly like mold. Like a moldy wet raincoat. Everywhere. It was like a never ending nightmare. I couldnt even open my car window, i would get a bad hit. Some beaches we tried were San Clemente, San elijo, Carlsbad, la jolla, and one other one I don't remember the name. That whole strip is bad. All of san Diego beaches from la jolla down to Coronado. There were two beaches that were ok. Silver strand (3.5) and imperial beach (2.5-3).
We found we could tolerate the southern parts of sandiego better than anyhing else, and away from the wetlands. There seems to be a serious problem with the wetlands there.
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Post by janisb on Jul 20, 2012 21:58:11 GMT -5
California Hot Springs (5) (at edge of Sequoia National Forest) but the RV park is rundown and the owners nasty; the nearby town for shopping, Porterville (2).
Road from California Hot Springs across Sherman Pass (5)
Bishop (on 395 N of portal to Whitney) (1)
395 from Bishop to Topaz Lake (1)
Mackleeville, CA (near the Carson River, about 30 miles S of Tahoe area) (4)
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Post by Lisa Petrison on Apr 10, 2013 16:32:34 GMT -5
My reactivity is a lot lower now than it used to be, and so I no longer may be the best person to give Locations Effect ratings. Still, I think I do have a sense of how to tell what a place is like, even if the bad ones don't make me as sick as they used to. Thus, here are my impressions of some various places in California, based on my experiences in 2012/2013.
San Francisco. I visited here on a sunny day in March 2013 and was surprised at how good I felt while in the town itself. I would rate it at a 4 (Good), maybe even a 5 (Excellent) on that day. However, Erik tells me that it's always been the case that SF felt great on some days and then declined dramatically on others (and not even necessarily on cloudy/rainy days), so I'm still afraid of that town. Also, there is no good way to get there: going through or even around Mountain View is a bad idea, and going through East Bay is a bad idea, and according to Erik coming from Marin County may be the worst idea of all. And I've heard of enough bad experiences from people living in Half Moon Bay that I wouldn't want to go that way either.
Santa Cruz. I went here several times in Winter 2013 and it felt pretty good to me. A great city for organic grocery shopping and healthful restaurants. 4 (Good).
Pacific Grove. I went here one evening in January 2013 and I can see why it has a bad reputation. If I were at a high level of reactivity, I wouldn't want to go there. 2 (Bad).
Hollister. I've been here a whole bunch of times and it always felt okay to me. 4 (Good).
Los Banos. Not pristine by any means, but not terrible either. 3 (Fair) to 4 (Good), with regard to the outdoor toxins that were historically problematic to me.
Firebaugh. There is no reason to go to this town, and it is very toxic and polluted in this part of the state. It is pretty near Fresno, which has a general reputation of being one of the most polluted places in the country. Good to avoid. 2( Bad) to 1 (Awful).
Bakersfield. This has the reputation of being one of the most toxic towns in all of California, maybe all of the U.S. I really hate driving through there and try to avoid it if I can. 2 (Bad) to 1 (Awful).
Santa Barbara. I spent part of a day here in March 2013. It felt okay to me, not great. I've gotten negative reports about it from other Moldies I trust in the past. 3 (Fair).
152/156. I have traveled this road between Los Banos and Hollister many times. It goes next to a big reservoir that never is very good and sometimes can be very very bad. It tends to be better on bright sunny days, worse at nightfall. If I were really reactive, I would try to avoid this stretch, at least at night or on non-sunny days. 2 (Poor) to 1 (Awful).
Mercey Hot Springs: About two hours from the Bay Area, an hour from Hollister. Very rarely anything other than excellent. The cabins, the two-bedroom house and even the Airstreams might work for Moldies. Great water (though the small amount of sulfur in it could be problematic for people whose detox capabilities are still really messed up, as mine were in 2009). Excellent (5).
J-1 (between Hollister and Mercey Hot Springs). There are sections on this road (a winding country one) that are really problematic. It still probably is better than taking 152/156 from Hollister to Mercey though.
Modesto: A pretty polluted town that felt really problematic to me even on a sunny fall day. I would be hesitant to go here on a bad day. 2 (Bad).
Merced: Better than Modesto, but not great. 3 (Fair).
Visalia/Hanford/Exeter: I went to this area in November 2012. As was the case a few years ago, it felt okay to me. 4 (Good).
Paso Robles: I went here in March 2013. It felt okay. 4 (Good).
Joshua Tree and Yucca Valley felt sort of polluted to me in March 2013, but not problematic other than that. 4 (Good).
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Post by redhummingbird on May 24, 2013 20:03:30 GMT -5
ALAMEDA: POOR (1)
I lived here when I was diagnosed. I spent 2 years here. It's full of mold and toxins.
LIVERMORE: FAIR (3)
Lived here for 1 year.
PLEASANTON: GOOD (4)
Stayed here about 7 months. Had the most improvement in my symptoms here.
SACRAMENTO: POOR (2)
I've been here 3 months. I've noticed my emotions have become flat. People in this area seem irritable. Lots of depression and suicides here (source: Sacramento Bee).
It's better than the Bay Area but not by much.
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Post by redhummingbird on May 24, 2013 20:06:06 GMT -5
EL CERRITO: TERRIBLE (1)
Had a relapse after moving here. Lots of water damaged buildings. Flooding from underground creeks.
CARPINTERIA: EXCELLENT (5)
The best I've ever felt is here (so far).
BORON: GOOD (4)
Surprisingly good. The area around Calico Ghost Town is excellent (5)
CLOVERDALE: EXCELLENT (5)
I spent a weekend here at a KOA cabin. I was sick (moderate level) but didn't know what I had. That weekend I lost all my symptoms.
I didn't go to the town though or spend time in any other buildings.
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