Mold or Oxygen? Feel better in Hawaii

[slayadragon]

I'm really interested in hearing more about people's experiences with mothballs. It seems there are two different kinds, neither of which are good, but that the ones that have naphthalene in them may be ESPECIALLY bad for us. One person who seems to be just moderately reactive to toxic mold said that mothballs did him in (causing him to pass out). He said that it was the same ME-type symptoms that he gets from mold except much worse.

He's a patient of Nancy Klimas', and she said that she'd seen other patients respond to naphthalene also. She told him it would be interesting to do a study on this, except that it would be unethical to poison patients to do it.

I don't think I've been around any naphthalene in recent years. I looked at a mothball package one day in Wal-Mart though, and naphthalene was listed as one of the ingredients. This scared me so much that I now avoid the sections of stores where mothballs are sold, and certainly don't want to experiment in purchasing any and exposing myself.

So if other people have had bad experiences with mothballs, I'd really like to know about them.

Best, Lisa

 

[jenbooks]

I think re: location effect the issue is there are so many microclimates, and only "so many" researchers. I'm the southeast one, I guess--though I've heard good things from others about coastal Florida, and I certainly am curious whether the Ocala wilderness will be as nice as the Osceola was. Just generally,national forests and wilderness work better.

I had some PEM but only in my NYC apartment and not nearly as bad as many others. But I'd feel at about a mile and a half of a walk in the park that I could not walk farther, as all these symptoms would flare. Now I am fairly active constantly and don't ever notice that...but I don't do concerted hikes, camping is just an active lifestyle generally. I've lost weight etc, not back to my pre-tickbite "fighting" weight ha ha ha...but melted away about 15 sedentary pounds...annoyingly my doc's office weighs me every time I come in so every two weeks the person who takes my vitals announces whether I've gained or lost a pound, I've not had a scale since a teen and ask not to be informed as I really don't care...

Anyway. Mothballs are really disgusting and known to be really toxic. THe other issue is they stay forever, they are worse than glade plugins. I had to throw out my hoody it was so permeated after going in the bathroom and I never went back in. Very few campgrounds use them, but maybe this one was trying to keep rodents out or something. I didn't notice getting sick, I just found the smell soooooo noxious I certainly am not wearing clothes with it. And a friend who put some mothballs in her bathroom two years ago--I can still smell it in her bathroom. Yuck. It just never goes away.

I am very curious about the gulf coast of Florida as we have a place to stay there-- a gal who is open to it and as I said I want to try St George's island. I am generally interested in a few very pristine getaways, and slowly trying to learn where they are. I instinctively avoided the north georgia mountains even tho the air is better. I do not like dense forest, aesthetically, emotionally, and mold-wise----along with bears etc. I like a view, a sense of space, wide open.

I definitely do worse around Atlanta and its pollution zone, period.

I will see if I feel much better again in south georgia north florida.

But I have compromises to make. I have work, and a doctor, and so I simply can't juggle everything in such a way as to try anywhere and everywhere. I tend to think Janis' choice of the desert hot springs would be good for me but I'm not up for more cross country trips, it was a completely stressful madcap experience, all for trying "safe" houses that were unsafe, every time.

 

[jenbooks]

I should add, I started hyperbaric oxygen within six months of my disastrous tickbite...and I started meyer's cocktails a year later. I then added IVIG a few years later, and glutathione...I really may not be a typical case. And also, there was probably always a mold problem in my apt but it got a thousand times worse after 2005, when the gut demolition began. By 2007 I was in a horrendously moldy apartment and for 2 years, declined precipitously, BUT I think the treatments I did probably saved me from dying...by the last six months I was mostly bedridden though.

 

[Hip]

Oh and one more thing...for me, bladder pain interstitial cystitis flare that keeps me peeing every fifteen minutes and no sleep, is so disruptive and debilitating

See the experimental interstitial cystitis treatment using Ruta graveolens posted here.

 

[slayadragon]

Here is a report from the National CFIDS Foundation on blue-green algal toxins:

http://www.ncf-net.org/pdf/BlueGreenAlgalToxins.pdf

From Discover, on the same topic:

>In conjunction with Elijah Stommel, the ALS specialist at Dartmouth, Cox is also investigating the peculiar clusters of cases in New England. As word about their work has spread, more doctors have come forward to report cases in the region, with the number of ALS victims jumping from the 200 in Stommels original database to 800 today. Sometimes a disease can be more prevalent in one spot than another due to random fluctuations, so the two researchers are working with epidemiologists who are using geographic software programs to distinguish true clusters from artifacts.
>
>The data suggest that ALS is 2.5 times more common than average within one-half mile of a lake or pond where cyanobacteria have bloomed. Stommel hypothesizes that people living around the lakes may have breathed in BMAA from the air, eaten fish contaminated with it, or accidentally swallowed it ?while swimming. He and Cox are conducting tests of brain bank tissue to see if the ALS patients in these regions do in fact have elevated levels of BMAA.

http://discovermagazine.com/2011/ma...ers-parkinsons/article_view?b_start:int=2&-C=

Just today, I encountered someone who relapsed back into severe ME/CFS as a result of swimming in a lake contaminated with cyanobacteria.

Khaly and Erik both live in places (Albuquerque and Reno respectively) where the water supply is contaminated with cyanobacteria. They boil ALL their water for all uses (whether toilet flushing or showering), in order to prevent it from permanently contaminating the RV water tanks. Erik says that showers with boiled water are "refreshing beyond expectation."

This does not seem to be the same toxin that grows in the sewers and caused the Lake Tahoe epidemic though. That one causes different and more severe symptoms and is much harder to decontaminate.

 

[u&iraok]

I feel much better when I go to Jamaica, for a few months after. I chalk it up to most of the reasons moblet mentioned--clean air, good water, good clean local food including lots of fruit, sugar cane and coconuts, low EMFs, lack of stress and better vibe than the vibe in a city, salt air, salt water bathing. I don't know about mold or allergies.

My husband, who detoxes easily, goes into a detox when he gets there. It's like his body is saying, thank you, now I can release this junk I was holding onto.

I took a oxidation stress test once when I came back and it tested low oxidation. I had been trying to get the level down for a while. I also notice that when I come back I'm not as sensitive to chemicals for a few months.

 

[u&iraok]

I definitely do worse around Atlanta and its pollution zone, period.

I live in Atlanta area and I hate the pollution. Hate, hate, hate. And hate. It's better than it was but it's the single most depressing thing for me not to have fresh air. I grew up in northern Illinois far enough away from Chicago that the air was clean, at least it was then. I also live near a power plant and they say they are installing scrubbers in 2012 to take care of the mercury and other emissions. So what's it like now? I mentioned one of the emissions to a friend of mine with a science degree and he looked shocked and said, 'That's really poisonous!'

You also mention chemtrails in Atlanta area? Could it just be from the airplaines since the airport is busy or do you know more about it being chemtrails?

As for Lake Lanier, even growing up in Illinois where there were a lot of lakes we knew then that a lot of them were dirty (I remember a sewage problem once when they closed a lake) and we would go to northern Michigan to a lake there that was unspoiled. I can only image how bad Lake Lanier is. The water level is low now, too, because of drought. That can't help.

 

[slayadragon]

I took a oxidation stress test once when I came back and it tested low oxidation. I had been trying to get the level down for a while. I also notice that when I come back I'm not as sensitive to chemicals for a few months.

I'm not familiar with this test and am interested in learning more about it. Do you have any info about it, such as what company offers it? What doctor recommended it to you?

Thanks much for your help.

Best, Lisa

 

[slayadragon]

Jen,

Below is what Erik has stated about what he does with the water. It would be interesting to find out exactly how he has this pump set up.

Boiling clothes definitely is the best way to handle them, from the times I've done it. It's unfortunate that this is not an easier thing to do.

I found that most of the lakes in the Midwest states that bothered me in general in the agricultural areas (e.g. Indiana, Ohio, Michigan, Missouri) were not good places for me. And unfortunately, most of the campgrounds in those places are right next to lakes. So in part for that reason, I've pretty much given up on camping in the Midwest.

Lakes in other states where I generally feel good (such as Kansas, Montana and Utah) almost always are fine for me. My theory about this continues to be that Roundup (which is used on corn/soybeans -- crops that are heavily grown in the states that are problems for me) is the driver here, but I doubt that's the only chemical that causes toxic algae rather than non-toxic algae to grow in lakes.

Kansas' lakes felt somewhat bad to me this past fall, following a drought that caused them to become almost wholly dried up. That makes some sense to me, since toxic gunk often sinks to the bottom and any biotoxin producers tend to release their dormant spores when deprived of water.

I've never found the outdoor toxin that I believe to be associated with sewage to be a problem in a lake. I've occasionally heard that this toxin can be associated with rivers, which doesn't surprise me. I know, for instance, that Cincinnati's sewage periodically ends up in the Ohio River, and I imagine that happens elsewhere as well.

It's interesting how much worse of a problem airplane trails (I hesitate to use the word "chemtrails" because it's so controversial) are in some places than others. Wichita, which is great (for me) in terms of everything else, has a particular problem with them. The Palm Springs area is much better, even though there's a lot of airplane (military and civilian) travel there. I'm a little perplexed by that.

It's easier to do avoidance in a place with a great macroclimate, but it's good to see people succeeding at this by using microclimates to their advantage. It does seem to me that when people are getting started, they're better off finding a good macroclimate to get clear in for a while, or a really reliable microclimate. I was impressed that you were able to find such a place in Georgia. Serenebe, was it? It would be nice to be able to recommend it as a place to people, though I see here (if this is the right place?) that it is not necessarily a mold-free haven.

http://www.tripadvisor.com/ShowUser...21229188-Inn_at_Serenbe-Palmetto_Georgia.html
(10/14/2008 review)

Thoughts?

Best, Lisa

*

Cargo trailers have no water system, except whatever one builds in.

Mine is specialized according to my needs. Instead of a water tank, my pump draws from a large stainless steel pot which is filled with water that has just been boiled.

The water coming down from a "bad zone" is sufficiently tainted that I can feel pulses of it in the water supply.

I find that when I boil water, it releases a cloud of "it" at a point under boiling temp.I have all vents, doors and windows open to allow this "It" to dissipate freely.

Without this tactic, I would really be hating life.

-Erik (2011, NewDynamic)

 

[u&iraok]

I'm not familiar with this test and am interested in learning more about it. Do you have any info about it, such as what company offers it? What doctor recommended it to you?

Thanks much for your help.

Best, Lisa

Lisa,

It's called Oxidata and is a very simple urine test you can do yourself. The Naturopath/Nutritionist I was seeing, Dr. Biamonte, used it in my treatment. I've pulled up this website at random after googling it: www.naturalhealthconsult.com/monographs/oxidatatest.html

 

[slayadragon]

Jen,

This is all really helpful, especially about the laundry. As people start successfully doing extreme avoidance, laundry quickly becomes a major problem. Simply doing everything by hand in boiled water (as Khaly and Erik do it) or in boiled filtered water (as you are doing it) seems to be a really safe solution. So I will suggest that to folks as an option.

Janis is right up the road from me, here in Desert Hot Springs (just north of Palm Springs). It's a good place. Sort of polluted, but that does not seem to be the issue for us.

I wish there were a hotel that was reliably good enough that I could send people there to (at least mostly) get clear, but that seems a pipe dream.

The panhandle (e.g. Amarillo) felt good to me, so that's consistent with what you report about Abilene. Not decontaminating after driving through Dallas (I was still young and foolish then) and then just driving straight through Abilene without stopping was a mistake.

It would be interesting to see how you responded to Kansas. There's agriculture (wheat, alfalfa, sunflower) there, with pesticides, but no Roundup crops. And I feel really good there. I remember one MCSer objecting. So it may be that for people who have their primary as pesticides, it's not a good place.

 

[u&iraok]

I had always thought dry and high, or moderately high, was ideal...but I felt so awful when we went to Las Cruces it dramatically changed my opinion. And as you know I discovered Abilene was excellent, while hill country was at least good to neutral...whereas Austin was sadly really really polluted, like Atlanta but less humid.

To find a microclimate, first zoom out and look at cities, their pollution, and then wind patterns. Try not to be near a city, or between two big cities. Try to get clean wind if possible...narrow it down that way first. That would be prevailing winds---obviously winds don't always blow in one direction, but generally they have patterns. It will be counterintuitive to the assumption, "The further from a city the better." It depends how the winds blow. If they blow from a very polluted city in your direction, you will get sick even hours away. In addition, generally ranchland, vacation land, without a huge amount of agriculture--I find a pattern there. Abilene had that, so did the hill country where Kelly lived and a bit west of there, Ingram and Hunt, which were a bit better than Kerrville...and Rutledge is like that, too. So I am starting to see that pattern as well. It makes sense. Heavy agriculture is very polluting...

Sometimes small university towns a few hours from a city are good.

I'd read that in regard to molds, dry desert areas may not be the best idea because molds there can be more dangerous as they have learned to adapt to dry conditions.

That is so true about which way the wind blows. You've really done some research in that area! Interesting about the microclimates. I live on the west side of Atlanta and the winds blow east. I've noticed from the 'ozone' (read, smog) reports that areas farther away from Atlanta than from me to the east have the same levels as my area which is a lot closer to Atlanta. But alas, I'm just too close. I wish I could go somewhere with clean air...I've picked a small island in the South Pacific as the best place but I just don't have the survival skills required.

 

[slayadragon]

On the mold avoidance blog ampligen4me, CityChanger talks about the Locations Effect:

>Ive yet to figure out if staying in my current location will be the best way to get there, especially with winter setting in, but so far Ive noticed that I dont seem as reactive to outside air as I do to exposed fabrics, especially bedding. When my pillow is exposed to the wrong toxins, that can singlehandedly ruin all the benefits I described above, and I wake up throughout the night with my heart racing. The changes in outside air do not tend to disturb my sleep, and Ive been through changes from the sunniest of days to the most depressing of days with very low barometric pressure.

>I may take a vacation further south in the coming months just to compare how I feel. If I feel drastically better there Ill probably do avoidance there, and if its par for the course Ill probably go back up north just because the medical resources are fairly robust where I am right now.

>Its weird to be taking treatment decisions so deliberately. Certainly its a departure from my ways in the past, but desperation sows impulsiveness, and I was in a state of desperation for 4 years before finding the only thing thats really worked avoidance.

http://ampligen4me.wordpress.com/2011/12/03/another-update/

 

[Grampus]

I just spent my 7 days on O'ahu and felt [mostly] good while I was there. I don't know if it was just the "vacation effect" or what, but I felt like I could actually go out and do things every day. Of course, at the end of the day I would be overly tired and barely able to put one foot in front of the other!

My sleep was still poor, despite all of the exercise. Believe me, we exercised while we were there. Walking in the sand, snorkeling, going for little hikes up hills and whatnot, and even just the daily walking around the main Waikiki shopping area was way more than I could accomplish on a "normal" day at home.

I think being out in the fresh air and sunshine all day really helps, plus getting to swim in the ocean water. These are not things I do at home because it's too nasty/hot/muggy/etc. in Houston. Now that I'm back I can feel my head "fogging up" again :headache: Grrrr.

 

[mojoey]

Great to hear about your experience Grampus.

Everyone immediately gravitates to the "vacation effect". A top ME/CFS specialist told me she hears of people often getting the "hawaii effect" when visiting but then once they move their lives there they no longer get the same effect. Therefore she calls this the "vacation effect". If this level of improvement is really caused by the fact that you're on vacation, wouldn't that corroborate all the Wesseley-ites that it's all in our head? I think it has nothing to do with stress relief. There are plenty of times that patients go on vacation without a worry in the world and feel worse, and definitely could not exercise!

The location and the stuff you bring with you seem to be dependent variables of how patients respond to being in Hawaii.

 

[slayadragon]

Late in my active illness (before starting mold avoidance), I got close to a full remission when I visited the northern region of Japan. This is a rural area with a lot of hot springs and old inns. (This is right near where the nuclear power accident took place, so I wouldn't suggest others go there now.)

Those old inns supply their guests with robes to wear, and I spent a lot of time just hanging around and soaking. I didn't unpack any of my stuff because the water was sulfurous and I didn't want everything I owned to smell like that.

I did feel worse on and after the days that I went out and did things, but I thought at the time it was post-exertional malaise. Now I think it's because I put on my mycotoxin-contaminated clothes!

Best, Lisa

 

[PokerPlayer]

Visit Las Vegas 1 more time?

So right now I am as bad off as I have ever been in my illness. After my las vegas trip I was able to use methylcobalamin again. That really helped. I was feeling pretty good again back at home in Seattle, but didn't give my body the rest I needed. During thanksgiving I ate a lot of pie and even had a few alcoholic drinks. I stayed up late 3 nights in a row. I crashed. I can no longer tolerate any b12 at all. I can no longer tolerate 10mg amitriptyline. I feel terrible inner restlessness and shortness of breath at rest. Depression has come back strong for the first time in 1.5 years. Yeah, its pretty scary again.

I am going to wait it out here over Xmas with the family. But if pure rest doesn't change me (which I don't think it will) I may have to go to a different climate again for an extended stay this time, until I can get back to a comfortable place with my body where I don't crash anymore. I am thinking I would stay in las vegas and hope to god that after a few days there my body will tolerate methyl b12 again so my body can properly detox.

I really messed up this time. Hopefully this will be the final lesson I need. I just need to get back to a place with my body where I can feel relaxed and able to do stuff and just be at peace with it, not looking for a way to improve my health all the time, but rather improve my life.

Oh yeah, found a couple links that say methylcobalamin helps with mycotoxins(mold) detox. http://www.easy-immune-health.com/b12-controversy.html

 

[PokerPlayer]

Also, lately I am starting to think that we are not all like Erik Johnson, and that some of us may need to use detox supplements like methylcobalamin b12 when we are in a mold free environment to get any improvement. I have thought about this because I tolerated b12 with no adverse reactions in the desert ......

 

[anne_likes_red]

Lisa,
What time of year did you visit Japan? Was it the Fukushima prefecture where you felt well, or further north?
Best,
Anne.

Late in my active illness (before starting mold avoidance), I got close to a full remission when I visited the northern region of Japan. This is a rural area with a lot of hot springs and old inns. (This is right near where the nuclear power accident took place, so I wouldn't suggest others go there now.)

Those old inns supply their guests with robes to wear, and I spent a lot of time just hanging around and soaking. I didn't unpack any of my stuff because the water was sulfurous and I didn't want everything I owned to smell like that.

I did feel worse on and after the days that I went out and did things, but I thought at the time it was post-exertional malaise. Now I think it's because I put on my mycotoxin-contaminated clothes!

Best, Lisa

 

[slayadragon]

Erik Johnson did not feel really great on the first couple of days of getting to a great place. He just felt enough better that he thought it would be worth trying to start doing "extreme avoidance" for an extended period of time, to see if he could get further improvements.

He spent some of the next several months in the deserts outside the Reno-Tahoe area, and some of it in town. He learned to be able to tell when he was being hit with the offending substances (sometimes indoors, sometimes outdoors), and used the decontamination strategies that he'd learned in the army (bag the old clothes, take a shower, put on fresh clothes) to make sure that he was "clear" after each hit. (Sometimes he was taking up to 10 showers a day. This is a little easier if people just go to a good place and stay there!)

By the end of four months, he felt like it was really working. By the end of six months, he was at "mostly recovered" status (with a few symptoms -- e.g. difficulties in doing math -- still present).

He decided early on that he wasn't going to take any supplements or drugs at all, to make this a "pure" experiment (so that people couldn't say that he got better for some other reason). He took some doxy at one point, but otherwise has been drug- and supplement-free since around 1999. (He does drink alcohol.) So maybe if he'd taken some sort of drugs or supplements, he could have gotten better faster, or gotten his reactivity to come down more. We don't know.

Presumably, it took a while for his system to repair itself and kill off some of the pathogens. He also has done a lot of detox through sweating (exercise), and says that he thinks he would still be a semi-invalid if he'd not been as aggressive with that.

Consistently, I've been able to tolerate just about anything I've tried in the Godforsaken Desert with no negative symptoms at all, except some tiredness and feeling crappy -- like a hangover -- from detox. (Well, I also trashed my adrenals, gut and liver from a super-intense detox, and so have had to work on supporting them. This toxin is scary stuff when it comes out and is very hard on the organs.) A certain school of thought is that going to the desert in order to be able to tolerate various treatments is a reasonable strategy.

I was in the Tohoku region of Japan in August 2007. This included Sendai and Matsushima, and then a lot of small spa towns to the west of there. But I actually did pretty well in Tokyo too, on that trip. That city felt to me a lot like New York City, where I also did pretty well for most of my illness. Those cities get a lot of air circulation from the ocean, and I think that helps.

It's hard to believe it would still feel good to me with all that nuclear radiation there now though.

Best, Lisa