Speaking of the desert...who here has went there and how long did you stay for before improving?

[Love Yourself]

I'm planning a trip to Death Valley and am trying to decide how long I'd need to go for to minimally test whether or not I'd improve at all (I'm currently located in NY, so I'm not exactly in a mold free state...or house. ).


How long did you stay for when you went to the desert and when did you start noticing improvements? (Also, where did you go?)

 

[Mary]

I've been living in the high desert of California for 13 years. It hasn't helped my ME/CFS though I do like the dry climate, all the sun and the heat in the summer.

 

[Heartl]

I've been living in the high desert of California for 13 years. It hasn't helped my ME/CFS though I do like the dry climate, all the sun and the heat in the summer.

Same here, live in Northern Nevada my entire life (dry climate) have been sick for at least 25 years

 

[antares4141]

10 years in NM living in all kinds of alternative housing situations on a remote location. Benefits are confounded by other conditions. Like I suspect I had unaddressed food allergies. Also chemical sensitivities? I had symptoms so bad at times I thought I might have been poisoned. So I got tested for the basic things like mercury and arsenic. Lyme, which all came back negative. It's been ten years now and I still have ups and downs which are rollercoaster like. Than also trends which vary over months and weeks more like the stock market. Chemical and mold exposures peppered through all this as confounders. Visiting my dad with questionable housing as far as mold goes. Short answer is 3 weeks probably isn't going to tell you much and will set you back substantially financially, physically, and emotionally. Expending these resources on a more permanent solution might be a better way to go. And I can't think of anything for people who are financially constrained other than living outside. Which I did under a carport next to my moldy house for 2 years in fl, again with mixed results before moving out to nm.

 

[antares4141]

I am doing better than I have probably since I took ill in 1997. But again their are so many confounders. I am 21 years older now. And many of the issues I raised in the other message. I had a new building put on my property a month and a half ago, and have been strikingly better since I moved into it. Time will help me (to some degree) gauge how much the building is responsible for this. But with this illness nothing is black and white. My definition of this would be moving out of a building with known mold issues and experiencing traumatic improvement which is what happened to me when I moved out of my moldy house onto the carport. I went from bedridden just able to feed myself and take care of immediate needs like showering, getting and preparing foods, managing finances, etc. To being somewhat functional, socialize somewhat, do moderately physically demanding things like lite work but not able to work and function like I was before the illness.

My new building:
https://antares4141.wixsite.com/website

I did post a while back called "reality tv show"

https://forums.phoenixrising.me/ind...-24-cfs-me-patients-move-out-to-desert.55450/

Still interested in trying to make this work. My biggest issue now is liability. I need to get somebody to draw me up a contract to protect myself. And I need an insurer that would recognize the unusual circumstances and be willing to insure me for them.


And after all the money I have spent already this barrier is going to be the most difficult to overcome.

 

[frozenborderline]

I don't think anyone has claimed that everywhere in the desert is pristine or clear. In fact Lisa Petrison said she thought of desert in more metaphorical terms , like "deserted wilderness". Many cities, towns, and even broad areas of the desert are bad. Like Tucson, or phoenix, ans there have even been bad reports from Joshua tree.

I have improved a lot in the desert but also in very wet temperate forests that were very remote. There's mold everywhere, my theory is that mold produces worse chemicals when it comes into contact with chemicals from agircukture or industry.

Not to mention that houses even in the best areas can be moldy. I think outdoor air is more important than indoor but if you sleep and spend a lot of time in a house that's moldy it wouldn't necessarily make up for being in the best location ever.

My favorite spots were red rocks conservation area , ancient bristlecone pine Forest, death valley , monongahela national Forest, and abiquiu new Mexico.

 

[MTpockets]

I've been living in the high desert of California for 13 years. It hasn't helped my ME/CFS though I do like the dry climate, all the sun and the heat in the summer.

Same. High desert in AZ. I've lived in the desert all my life. Didn't keep me from getting ME, but I love that it is easy to avoid mold here. I need the dry heat.

 

[frozenborderline]

Same. High desert in AZ. I've lived in the desert all my life. Didn't keep me from getting ME, but I love that it is easy to avoid mold here. I need the dry heat.

Where in AZ? I felt like the best spots were Sedona area , grand canyon, and petrified national Forest. But there have been a ton of fires recently that make things tougher

 

[frozenborderline]

People have experienced locations effect in the Caribbean for example

 

[antares4141]

I'm still wanting to take on some guest's in
My new building:
https://antares4141.wixsite.com/website

Liability issues and insurance are the problem. The housing is potentially a fire hazard. I didn't think that was as big of an issue as it is until I was reading about hexayurts made out of styrofoam and came on this:
https://www.appropedia.org/Hexayurt_Safety_Information

So the only way I can think of to circumvent this is to buy 4x8 sheets of metal and panel the entire inside of my building. Which would be labor intensive and pricey. Then I have to get homeowners ins. And I'm sure there would still be other important issues I would have to address.

So I'm thinking maybe the only way to realize my dream is to create a temporary desert community on BLM land.
Create a bunch of hexayurts to live in:
https://www.appropedia.org/Hexayurt_playa_checklist

There are instructional videos on how to make them in a way where you could fold them and put them on the roof of your car for transportation.

Which for a couple of weeks might be tenable. But long term asking somebody who is sick to try to live this way is a tall order. You would have to be on the higher functioning end of the spectrum to be able to do it. Or have an assistant who isn't sick and can take on all the chores that would need to be done to make something like this happen.

Than you have issues like rain and cold and heat. What your going to put the hexayurt on. IE some type of plastic underlayment to keep the sand out.
Cooking, cleaning, access to toilet and shower.
Finances. Most people can't afford an excursion like this.

My main justification for living in the desert is that I am in a remote area so I can get away with a lot of code issues you cant in the city. And that it doesn't rain often so I don't have to worry about humidity and water intrusion into my building as much as I would otherwise.

But when building materials do get wet mold grows just as fast out here if not faster than back east.

I suspect if I had the same amenities back east as I have here I might do as well but don't really know for sure. I've stayed at my dad's place in NC outside in my trailer but the house next to it is moldy and is a huge confounder. As is the travel trailer which I have to stay in.

 

[frozenborderline]

I'm still wanting to take on some guest's in
My new building:
https://antares4141.wixsite.com/website

Liability issues and insurance are the problem. The housing is potentially a fire hazard. I didn't think that was as big of an issue as it is until I was reading about hexayurts made out of styrofoam and came on this:
https://www.appropedia.org/Hexayurt_Safety_Information

So the only way I can think of to circumvent this is to buy 4x8 sheets of metal and panel the entire inside of my building. Which would be labor intensive and pricey. Then I have to get homeowners ins. And I'm sure there would still be other important issues I would have to address.

So I'm thinking maybe the only way to realize my dream is to create a temporary desert community on BLM land.
Create a bunch of hexayurts to live in:
https://www.appropedia.org/Hexayurt_playa_checklist

There are instructional videos on how to make them in a way where you could fold them and put them on the roof of your car for transportation.

Which for a couple of weeks might be tenable. But long term asking somebody who is sick to try to live this way is a tall order. You would have to be on the higher functioning end of the spectrum to be able to do it. Or have an assistant who isn't sick and can take on all the chores that would need to be done to make something like this happen.

Than you have issues like rain and cold and heat. What your going to put the hexayurt on. IE some type of plastic underlayment to keep the sand out.
Cooking, cleaning, access to toilet and shower.
Finances. Most people can't afford an excursion like this.

My main justification for living in the desert is that I am in a remote area so I can get away with a lot of code issues you cant in the city. And that it doesn't rain often so I don't have to worry about humidity and water intrusion into my building as much as I would otherwise.

But when building materials do get wet mold grows just as fast out here if not faster than back east.

I suspect if I had the same amenities back east as I have here I might do as well but don't really know for sure. I've stayed at my dad's place in NC outside in my trailer but the house next to it is moldy and is a huge confounder. As is the travel trailer which I have to stay in.

I may be interested. Where is it located

 

[frozenborderline]

And how ade you doing health wise in your current location ?

 

[antares4141]

I may be interested. Where is it located

I am located in a small town called "cutter" in New mexico. You should be able to find it on google maps. But like I said I am still struggling with insurance issues.

My plan was to focus on people who are on the more disabled end of the spectrum and do a youtube documentary of their experience.

Document how much they think it helped them, do all the things reality tv shows do to keep the viewers interested.

Try to gather information like the type of home they came from. Maybe get an air quality expert to evaluate and document the types of issues it had. Thinking maybe somebody might be willing to do this for free since it would be a public service to help make the public aware of our impossible situation and the denial and lack of help we get from authorities.


My original plan was to do this on a large scale like with 14 people maybe. I posted on the idea here:
https://forums.phoenixrising.me/thr...-24-cfs-me-patients-move-out-to-desert.55450/
Again liability issues and a large layout of cash keeps this from happening.

And again my main motive is to make the public more aware of our situation and the thinking is if that happened maybe we could put enough pressure on authorities to do serious research into the mold connection to CFS.

Not only is it a vital clue into what drives the illness, but nobody to date has established the illness is real. And I just don't see why we couldn't do this by conducting studies that focus on finding a strong coralation to mold and cfs.

I'm now thinking if I were to donate the use of my building to two or three people I would move out for the interim. Do a youtube documentary of it.

And with the publicity I get from this try to get more people interested into doing a larger scale version of the same thing.

 

[frozenborderline]

That is a very interesting idea. Your building style also looks solid. I don't know cutter but we have explored new Mexico a little. Parts of northern new Mexico seem really prostine and promising but are too cold for camping currently. Do you know about the people who live on the taos mesa ? Less of a mold community but similar off grid and less zoning laws ans stuff. We could maybe offer compensation if the building feels good enough and or get one or two more participants and do a documentary. But how is your health and how do you feel in rhe outdoor air there ?

 

[antares4141]

I have been here since 2010. And when I first moved in I was in pretty bad shape. I could barely take care of household chores, feed myself get groceries. I quit gluten in 2011 and seemed to get better for about the first three days than back to my barely able to do the basic houshold chores condition at that time.

Over the years since I quit gluten some of my symptoms when almost completly away. In late 2018 about a year and a month ago I started eating gluten again and actually seemed to feel better. I'm still eating gluten.

Now I worked about 8 hours today So I have come a long ways. And I am getting older but still seem to be improving slowly. I am 60 now. Got sick at 47.

My condition seems to go in trends like the stock market. A month or a week from now I might do worse again. I think a large part of it was spending time with my dad in NC though. The exposure to my dad's moldy house would leave me with lingering effects maybe?

I do get PEM and can spend a day recouperating after working all day like I did today. Than other times not. But mostly do pay a price for working that long. Good chance I won't be able to do a thing tomorrow.

Don't know anything about the people on Taos Mesa.

Air being dry I think gives me issues. Hard on respirtory tract because it's dry. Nose tends to be bloody sometimes when I blow it.
But also lot's of airbore particles because of the arid climate. Copius amounts of dust suspened in the air.

Also have fires in the summer often. I've been lucky the last couple of years to be out of town durring these events.

I did have to do some repairs to my building. You can read about the issue here:
https://forums.phoenixrising.me/threads/septic-tank-gas.77528/#post-2231061
I have a tendency to cut corners and than pay for it on down the line. I since bought 22 2'x8' corragated metal panels and covered the styrofoam sheathed walls on the outside part of my living area with them. To keep the rats out. Always something. It was a real mess cleaning up. I had to throw away a lot of the insulation than wipe down all the metal component's with ammonia.

 

[frozenborderline]

It sounds like you are at least in a pretty good location with that much improvement. I've heard bad things abouf Las Cruces and truth or consequences but good things about white sands ans some of the alamagordo area.

 

[frozenborderline]

@ashleyO

 

[antares4141]

It sounds like you are at least in a pretty good location with that much improvement. I've heard bad things abouf Las Cruces and truth or consequences but good things about white sands ans some of the alamagordo area.

I think it has more to do with the type of housing you are in and the degree of mold issues in the particular house you are in. Does it have any water intrusion? Has it ever had any? Is there any mold in the hvac equipment?

Even than a new house you are going to have off gassing. Carpet, cabinet's, paint, drywall, pesticides used over the years. Any rotten wood in the attic or walls?

I originally made a drywall building to live in out here and I never thrived in it. Inside of a 30x40' metal warehouse type building. So no water damage or resulting mold. When you are living in it you don't notice the smell but if I would go somewhere for a week and come back it was very noticeable. "Drywall smell" So I've bounced back and forth about chemical sensitivity over the years. And my interpretation of its significance in my day to day symptoms.

Maybe it was really bad drywall? Chinese drywall maybe? I've not noticed any corrosion on things inside which is one of the signs I have read about.

When I first got sick I thought chemical sensitivity was my issue cause what I initially thought caused my condition was wholesale exposure to pesticides where I worked as a lawn maintenance contractor.

Once I discovered the mold in my house I dismissed the chemical sensitivity for years, and it's significance.

Living in the drywall house has changed my view on this once again.

The issues I had with food sensitivity also lead me to believe that mold is a gigantic clue but not necessarily the cause. Or the whole equation as far as avoidance and "getting clear" are concerned.

Certainly in my opinion if you don't address mold you may as well not worry about any of the other issues.

Chemical sensitivity, Food sensitivity, Pollen, Pesticides, Dust, Pollution from factories, fires, car exhaust.

None of those things will matter, your not going to get better.

 

[frozenborderline]

I agree that indoor mold matters. But I also firmly believe that outdoor air matters. I've heard bad things about the outdoor air in Las Cruces ans truth or consequences

 

[MTpockets]

Where in AZ? I felt like the best spots were Sedona area , grand canyon, and petrified national Forest. But there have been a ton of fires recently that make things tougher

I'm in Navajo County area. Not as high as Flagstaff. But I grew up in Graham County only two hours away from the border. Fire season tends to be rough, but it clears up fast.