Mold or Oxygen? Feel better in Hawaii

[slayadragon]

Pokerplayer,
Thanks for starting this interesting thread.

I didn't notice improvement in Hawaii myself (I was only there 5 days) but I noticed significant cognitive improvement when I spent time in the Cyclades Islands off Greece. I haven't experienced the same effect anywhere else. I felt it was more than climate.

PS Lisa I will contribute to your website I saw it mentioned on fb and didn't get around to it yet. Thanks for the link. Anne.

That would be great, Anne!

I don't know if you've friended me on FB, but please do so if you've not. (Just my name - Lisa Petrison.) I'm more than happy to have other ME/CFS patients as FB friends as well.

 

[Valentijn]

I feel much better in Maui, and spent much of my time on the beaches in kihei while there. Sounds like you did not get any improvement from being in Hawaii? I certainly do.

I haven't been there since I got sick.

 

[anne_likes_red]

Will do Lisa. We have friends in common I'm sure.

I just realised, the Cyclades are only 60 or 70 miles north of Crete. Must talk to Erik!

That would be great, Anne!

I don't know if you've friended me on FB, but please do so if you've not. (Just my name - Lisa Petrison.) I'm more than happy to have other ME/CFS patients as FB friends as well.

 

[Grampus]

My husband recently spent 3 weeks working in Singapore & Malaysia (very nearly on the Equator) and he said he felt good there the whole time, even though it rained a lot. Now that he is home, he is is sliding back into the "funk" with me.

I am on the 21 day countdown to our trip to Oahu for our 15-yr anniversary. It will be interesting to see how we feel there. :victory: Our day to day existence here in Houston is this --> :headache:

 

[slayadragon]

Here are a few thoughts about why Hawaii and the Caribbean islands might be "feel-good places."

1. These places are especially sunny. UV light is known to degrade toxins from mold, cyanobacteria, diatoms and other microorganisms.

2. The beaches in these places have lots of sand. I've yet to research this myself, but Erik Johnson recently wrote, "My physics advisors tell me that the beneficial conductance-insulating properties of silica mean that in search of the best location for improvement, 'Godforsaken Desert' is literally the best description and advice I could give." (I'd like to hear more thoughts about this. Maybe we should ask Rich?)

3. Ocean breezes blow fresh air onto the beach, diluting the toxins that are present.

4. Beaches have lots of negative ions, from both the sea and from the greenery. (My own experience is that places with more "green stuff" do feel much better to me, even if they're just a small wooded park in the city. I think this is specific with regard to neutralizing the effects of mycotoxins/biotoxins. Again, I'd like to get some expert opinions on possible mechanisms.)

5. Some of these islands may not have had specific chemicals used as much on them. It is seeming quite clear that molds etc. growing in pristine places do not produce (substantial) toxins that are problematic to humans. It's the intersection between molds etc. and manmade toxins that the problems appear to arise, and particular toxins seem to be especially problematic. Especially problematic may be pesticides (Roundup and Benomyl seem to be particularly suspect) and fire retardants (such as PBDE's).

6. Places closer to the equator have longer days during the winter months. This would correspond to the UV issue (above), but I think there may be more to it than that. In many places, CFS patients tend to feel much worse during the winter months, and some of us believe that is due to particular kinds of biotoxins being present at much higher levels in the outside air during this time. Erik calls this "Suicide Season." Interestingly to me, this period of time seems to be centered around the winter solstice (about six weeks in either direction), rather than specifically related to sunniness or temperature. Probably this is too controversial for this board, and bringing it up will get me into trouble, but it seems clear that some of these toxins emanate from sewers. I've been told that during the winter months, all the gunk at the bottom of lakes rises toward the top, and I'm wondering if this might happen in sewers as well. Does anyone know anything about the phenomenon in which lakes "turn" during the winter months? Is it related to length of the day?

The idea that the Hawaii/island effect is related to oxygen levels seems wrong to me. Certainly some people benefit from oxygen, but that's not a consistent enough effect across places at sea level that it seems to be more than peripheral. All things being equal, a little added oxygen could help some people, of course.

I felt absolutely fantastic in Santa Fe in 1988, maybe better than anywhere else in my life. In 1998, I felt pretty good there. Now I can't go there at all -- it's one of the more problematic places I've been. I do understand that conventional air quality indices there say it's good, but those don't measure biotoxins. Like most ski areas, Santa Fe uses lots of fire retardants, and my guess is that this is what's driving the problem. I tried very hard to find a good microclimate in the area, putting many hundreds of miles on my car, and was unable to do it. Usually the Santa Fe Opera House felt good to me (it's high on a hill in an Indian reservation community), but that's the only tolerable place I was able to find. And unfortunately, they don't allow camping in their parking lot.

 

[LBS]

Hello PokerPlayer,

I haven't read this whole thread, so forgive me if I repeat what someone else has suggested. Have you been allergy tested for molds? I was tested a few years back and discovered that I am highly reactive to alternaria, a mold that is found everywhere outdoors. I'm also allergic to many other things, but from the limited reading I have done, alternaria allergies are somewhat different from most other environmental allergens in the way they work, and the symptoms I get from this allergy are very different from the sneezing and so forth from pollens, etc. It mainly causes headaches, swelling, fatigue and irritability in me.

I used to get horrible headaches along with my fatigue crashes, but now that I know about this mold allergy I can do a lot more to prevent exposure. I removed a potted plant from my office the day after I got my test results, and immediately stopped getting the daily headaches I was getting at work. I've also found that location makes a big difference in my headaches and the fatigue that is associated with them; I went to San Diego during a rain storm and had headaches and fatigue the whole time, and when I came back to Sacramento during the dry summer season, I was fine again.

I know that alternaria is not the whole of my problem, but it's been one big piece of the puzzle that I've been able to work with. Unfortunately, it's everywhere, all the time, but I tend to get flares during certain seasons (damp seasons). I wear a face mask when I feel that characteristic swelling in my face and head beginning, and that usually keeps the headache and fatigue from developing.

Hope something here in this thread is helpful for you!

 

[slayadragon]

Someone just sent me the following, related to one of my comments in my post above.

Lisa

*

when the lake water on top is cooled in the fall/winter, it gets colder than the water underneath the surface and the cold water "sinks" and the warm water "rises up". In fact, ice can't form on top until after all of the warmer water is cooled and no more warmer water rises up.

A: from: http://science.jrank.org/pages/3792/Lake-Water-circulation.html

Water circulation is the mixing of water in a lake. Water mixes at the surface, within the top layer, the epilimnion, and among layers. The bottom layer of water is called the hypolimnion, and the water between the hypolimnion and epilimnion makes up the metalimnion. The metalimnion is also called the thermocline, because a drastic temperature change occurs the lower one goes in it. Mixing is facilitated by wind at the epilimnion and is possible due to water density variation between layers. When layers mix and change places, a lake is said to turn over. Turnover occurs when water in an upper layer is heavier, or denser than the layer of water underneath it. Lakes that turn over once a year are said to be monomictic. Lakes that turn over twice a year, once in spring and once in fall, are called dimictic. Lakes that turn over at least once a year are called holomictic. Some lakes do not fully turn over at all due to high salt content; the high salt lower layer prevents hypolimnic turnover in these meromictic lakes.

The most controlling factors in lake circulation are changes and differences in water temperature; however, salinity, wind, and lake shape each have a role in circulation as well. Bowl-shaped lakes tend to turn over more easily than oxbow lakes. Water temperature determines water density which, in turn, accounts for turnover. Water is at its minimum density in the form of ice. Warmer water is less dense than cooler water until cold water reaches 39.2F (4C), when it gets lighter. Deeper water is generally both denser and colder than shallower waterother than ice.

Read more: Lake - Water Circulation - Lakes, Epilimnion, Hypolimnion, and Turnover - JRank Articles http://science.jrank.org/pages/3792/Lake-Water-circulation.html#ixzz1dPzKbgPP

 

[merylg]

Maybe one of the good effects of Hawaii is higher sulphur in the soil due to volcanic activity. Remember for those who listened to Dr Mercola's interviews (7 parts) with Dr Stephanie Seneff, how she said that people living on Crete really benefitted from the higher sulphur in the soil.

http://www.youtube.com/watch?v=5QUChSlUEH0

 

[slayadragon]

A number of people have asked me to put together a color-coded map of my travels, according to how I felt when in different places. So I decided to give it a shot.

I uploaded a copy with a discussion onto the Locations Effect board:

http://locationseffect.proboards.com/index.cgi?board=locations&action=display&thread=242&page=1

If you're a Facebook friend of mine, you can see the map here:

http://www.facebook.com/photo.php?f...41640733246.2077941.1603672188&type=1&theater

(And if you're on Facebook and not yet a friend of mine, please do "Friend" me!)

Best,

Lisa Petrison

 

[anne_likes_red]

Lisa I couldn't join the Locations Effect board the other day because the captcha thing wouldn't load so I couldn't prove I was human
I'm using a different computer now so will give it another go (I haven't forgotten!).
Anne.

 

[kurt]

We are going to try if we can to get to an area north of Clearwater where she will let us dry camp on her land and she has an electric outlet and an outdoor shower. But the real reason I want to go there is to try camping on St George's Island which is supposedly unbelievably beautiful and pristine. Just fyi if you're planning to be in that area, not down in the Ft Lauderdale area.
...

That was for us. It really varies. I can be at a certain state park and the leaf molds or soil molds are bad--half an hour away in town no problem, an hour away in another state park without such dense forest, fine. It's very individual. THERE ARE MINI ECOSYSTEMS.

That is a good point, about mini ecosystems. I have wondered whether some ecosystems have more bio-similar contaminants, triggering various responses (autoimmune, allergy, general inflammation, etc).

St George's Island (and its companion, Dog Island), that brings back memories, one of my favorite places in the world, just incredibly serene. Especially the FL State Park on St George's. I never made the 'feel good' connection before, but we used to go there regularly when I was starting to have some pre-CFS symptoms, while at FSU. And I always felt better after the trip out to the island, although that might just have been due to decompressing. Also probably very low EMF, due to the shape of the island, if you drive out to the Eastern point, through the park, you are pretty much in the middle of a large expanse of the Gulf...

 

[pine108kell]

Also another thought in regard to sunlight (not only Vitamin D via UVB but infrared light which is healing and everybody ignores),. In 2005 it was noted that sunlight was down 22% around the world because of particulate pollution. Given that in nearly 2012 with incessant chemtrails and an increase in pollution, it's probably worse.

Just to be sure facts are straight--The reduction of sunlight by GLOBAL dimming is thought to never have been greater than 4% and that occured over a 30-year period (1960-1990). Global dimming has actually been reduced in recent years.

Also, if sunlight was reduced by pollution or clouds that does not mean infrared radiation would decrease--it could actually increase, although I doubt that those changes in infrared affect anyone's health.

 

[slayadragon]

Another blog related to this topic:

http://ampligen4me.wordpress.com/2011/11/21/definite-cause-effect/

"I bucked up and asked the landlord if I could move my trailer into her backyard and stay there. Shockingly she said yes. My first night there, I crashed like a baby. It felt like my body finally wanted to sleep for the first time in months. Within a few hours, my brain & vision had come back online. 2 days later, the unbelievable happened. I drove a ways to do 5 loads of laundry (carrying them all in trash bags), went grocery shopping, drove back, hung dry all 5 loads in 30-something degree weather, went back into my trailer and waited for the crash. And waited. Then I found myself stop waiting, and went to work on my computer. Sure I was winded, but the burning PEM (and by burning I mean hot sensation all over combined with cold sweats and flu-like malaise) never came."

 

[Hip]

A number of people have asked me to put together a color-coded map of my travels, according to how I felt when in different places. So I decided to give it a shot. I uploaded a copy with a discussion onto the Locations Effect board:

http://locationseffect.proboards.com/index.cgi?board=locations&action=display&thread=242&page=1

Probably a coincidence, but your map of where you felt best is not so dissimilar to a map of water hardness in the US:

http://water.usgs.gov/owq/images/HardnessMap.gif

 

[anne_likes_red]

Stephanie Seneff mentions water "hardness" in her talk with Dr Mercola. (She says people who drink hard water have a lower incidence of cardiovascular disease.)

Good spotting Hip! Most interesting

 

[slayadragon]

I tend to think that this map (of poisoned places) is more relevant to my experience of the "Locations Effect."

http://www.npr.org/news/graphics/2011/10/toxic-air/#4.00/40.02/-109.25

Generally, how I feel in different places seems to be tied to the presence of manmade chemicals. This map seems to roughly track "civilization," which tends to be a problem for me.

This map isn't 100% indicative of my experience, because not all chemicals are taken into account (just as they're not taken into account in air quality data). Specifically, the use of fire retardants (which are used liberally in national parks like Yellowstone and ski areas like Santa Fe) are almost always left off. I suspect that Roundup may also be a factor in my illness, and it's not reported in most pollution indices either.

Although I think all chemicals are problematic for me, some are much more so than others. For instance, Palm Springs does not have great air quality according to conventional standards, but I feel much better there than in most places. On the other hand, although Truckee, California, is recognized by many doctors as a place where a variety of health effects (especially cancer) are especially problematic, air quality indices don't make it seem like it's horrific.

So my suspicion is that the "experts" aren't always measuring the right things.

I definitely believe that sulfur could be an important factor in our illness, but that's not responsible for the experiences I reported in my map. Sulfur deficiency (as a result of soft water) would take a long time to manifest itself, whereas I often feel much better or much worse almost immediately (within less than 30 minutes) after getting to a new location.

Best, Lisa

 

[PokerPlayer]

Not Staying in Hawaii

So I am not going to move to hawaii. I just don't think its worth moving away from my family and going from 20% health in seattle to 40% health in hawaii. I still wouldn't be able to work full time, so it destroys the whole point.

I was there for 7 days last week. I spent day 4 in a hotel room that when I got there it immediately felt musty and I could sense air hunger (first time I encountered this in hawaii). I knew I should leave but I stayed the night. I woke up the next morning and my prostatitis and leg burning was back for the first time in hawaii, and for the next 3 days it remained. So I know that the mold effect is REAL.

I am at home again in Seattle, and I can say for mold avoidance all I will pretty much have to do to avoid any kind of major impact on my health is to stay away from my bathroom. I definitely notice brain fog and palpitations when I take a bath or long shower.

I also found that hawaii benefits aren't across the board on my symptoms. Although it takes more effort to get PEM, I still get it, just without the heart palpitations (weird). The fatigue also doesn't go away. What is helped a lot is brain fog clearing, prostatitis and hot leg pains gone, libido back 100%. Weird stuff like touching sensation feels like it is normalized in hawaii, like when I touch my hair in seattle it always feels dry like straw, but in hawaii it feels super soft! Also, when I grab a towel in seattle it won't really feel like anything special, but in hawaii I notice it feels soft and smooth. When I slip under the sheets in hawaii the covers of the bed feel so nice on my skin. It just seems like my skin is all around more sensitive to feel and sensations in a good way in hawaii. Oh yeah, also it seems like a normalization of melatonin hormone secretion or its effect is normalized. That feeling that you get when you are a little 6 year old kid and you can't even keep your eyes open past 9 pm because you feel drunk off of melatonin.

 

[slayadragon]

This is the way I'm currently looking at this:

CFS patients have a susceptibility to a variety of toxins, but most especially to specific kinds of toxins. Ones that are especially inflammatory (such as those made by toxic molds) and those that work through a glutamate mechanism (such as those made by certain aquatic biotoxins) are particularly problematic.

Why we are so susceptible is unclear. Certainly some of this has to do with problems in the methylation cycle and other detox mechanisms. Having holes in blood-brain barrier (which satratoxin -- Stachybotrys toxins -- is known to cause) is another thing that makes us susceptible. My suspicion is that there is some kind of problem in terms of one or more particular anti-inflammatory cytokines not being responsive enough (meaning that exposures to inflammatory toxins creates a runaway train response). Shoemaker talks about HLA-DR genotypes and problems with certain hormones like VIP and MSH making some people susceptible. Having lots of certain kinds of biotoxins in our bodies seems to make us more likely to be affected by exposures to even a smidge more. Likely there are other problems as well.

Basically, this is the same phenomenon as MCS. Tiny amounts of toxin trigger massive responses. The problem is that the MCS people (like this professor from Harvard Medical School) don't seem to get that toxic mold makes CHEMICALS. And unfortunately, for patients with CFS, those chemicals seem to be the ones that are most problematic.

http://www.youtube.com/watch?v=2ZF37YmrpYs&feature=share

Unfortunately, lots of inflammatory and glutamate toxins exist. Inflammatory toxins aren't limited just to toxic mold (naphthalene also seems to be really problematic, for example), but toxic mold is really common and gets spread around really easily.

These toxins can be in buildings; in the outside air; and stuck to objects/animals/people. Unless all three sources are addressed, the likelihood that people are going to get to the point where really substantial permanent improvements occur is very low. There's too much of this crap floating around in the world for us to be be able to get really clear of it by chance, just by moving to a place with good outside air. Even if we can find a place with great outdoor air (and I can tell you some), there still are going to be moldy buildings, and objects that have been contaminated by moldy buildings, to bring us down.

The other thing is that the pathogens are a real part of this disease. Even in the clearest of locations, some of them are still going to cause symptoms. The goal in moving to a good place is not (in my opinion) just to feel better on Day 1, but to reduce toxic stress on the body so that it has a chance to heal (dump toxins, kill pathogens, do repair work). This may take substantial amounts of time. Just as one day of toxic exposure is not what made us sick, one day of lack of exposure may not be enough to make us well.

If we'd been poisoned with (say) arsenic, we wouldn't expect not consuming any more arsenic to be sufficient to immediately make us better. This is the same thing.

Best, Lisa

 

[slayadragon]

Related to my last post, here Janis talks about the issue of cross-contamination of objects:

http://cfsmethylation.blogspot.com/2011/11/learning-about-contamination.html


After spending a brief time in a bad house, she moved back in her tent to a place with great air. But unfortunately, some of her own stuff got cross-contaminated from the bad house -- meaning that she still didn't feel good.

Only after she addressed all three issues (good outside air, no mold growing in her living quarters, no cross-contaminated objects present) did she feel better.

Amazing how much of a difference even tiny amounts of this stuff can make. It really is ridiculous!


Here's another post on this same theme, from another blogger:

http://ampligen4me.wordpress.com/2011/09/29/if-i-get-any-more-sensitive-ill-cry-for-no-good-reason/


Best, Lisa

 

[slayadragon]

So far, when I've compared "Locations Effect" notes with the other people who have classic ME and who are successfully pursuing extreme avoidance (i.e. according to Erik's instructions), our assessments of different places have been remarkably similar. I was really surprised at just how similar, at first.

I'm talking here in terms of triggering just the specific disease symptoms themselves though. I'm not talking about things like avoiding cold, wind, rain, heat, sun, high altitudes, noise, insects, allergens, trashy places/people, or pollution that, while unpleasant, does not lead to ME symptoms (as defined by the ME ICC criteria).

These are all people who believe that toxic mold was a big factor in kicking off their illnesses though (e.g. who were living in particularly moldy places when they got sick). And they all report classic ME case histories.

I've occasionally talked to some people who have MCS but who seemed to have had their illnesses kicked off by big exposures to some other substance (such as pesticides or industrial chemicals). My feeling is that these people may indeed have somewhat different reactivities than I do, and thus may feel better or worse in different places. This would be consistent with the idea that they have different "primaries" than I do.

I'm not convinced that these people have classic ME though. Frequently their illnesses would get them a CDC CFS diagnosis, but that's not exactly the same thing. ME seems to me to be more specifically a biotoxin illness -- mold, Lyme, ciguatera, cyanobacteria, other outdoor biotoxins.

Of course, all of this is speculative. Until we get some research into the phenomenon, or at least larger numbers of reliable reports, it's hard to know whether ME type symptoms are triggered by the same toxins/locations in all people with this disease, or even whether all people with ME are triggered by toxins at all. And the facts that locations can vary over days or seasons, and that just driving a few miles can make a huge difference in some places, makes this even more difficult to piece together.

That's why I really appreciate hearing reports on different locations, from a variety of people. This is not a perfect methodology for learning about what's going on, but at least it's a start.

Thanks very much to folks for considering contributing their experiences, therefore.

http://locationseffect.proboards.com/index.cgi?

Best, Lisa