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

How long did you stay in the desert for before you started noticing improvements?

  • Overnight

    Votes: 0 0.0%
  • A weekend/two days

    Votes: 1 8.3%
  • Last than a week

    Votes: 3 25.0%
  • One week

    Votes: 0 0.0%
  • Somewhere vaguely in between 1-2 weeks

    Votes: 0 0.0%
  • 2 weeks

    Votes: 0 0.0%
  • I didn't have any improvements while in the desert. :(

    Votes: 5 41.7%
  • Other: please explain in thread!

    Votes: 3 25.0%

  • Total voters
    12

antares4141

Senior Member
Messages
547
Likes
756
Location
Truth or consequences, nm
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
Will there is plenty of outdoor mold in just about any environment. How much of a roll that plays I really don't know. There have always been too many other variables for me to suss that out. I do get better many times when I leave here but not all the time. And that same phenomenon worked when I was in fl.

I have thought that I need to experiment with air filtration again. But that would require I stay indoors and I spend a large portion of my time outside when I am not dealing with PEM from trying to do too much.
 

Mouse girl

Senior Member
Messages
201
Likes
404
The final tipping point for me getting cfs/me was moving into a moldy apartment. I was only there for 6 weeks but got hit with a big earthquake while there and from that day forward, had vertigo which I never had before, and qwickly turned yellow, had my GI system go out was migrained, pained, sleeping and exhausted beyound belief and the new thing of brainfog. I was exploring things without the benefit of health insurance, of course, as they was decades ago and I had no money and wondered if my apartment could be making me sick. I stayed at my boyfriends and my dad's house for a week and felt better so I never went back, except to get my stuff. I noticed that I had to wash or dry clean all my clothes as I would be effected if I put on a jacket etc. And I threw out my mattress. I didn't have much so that was a plus really. This was way before anyone even knew mold was a thing.

Anyways. For a couple of years, I thought mold was the main issue. I was calling places in other countries, anywhere to see how I could get the mold "out of my body". This was 25 years ago before the internet and honestly, in some ways there was better information and patient networks and local doctor info. This was also before the insanity of the anit vax thing. Back then, those who tend to be anti science bought into the idea that taking anti biotics gave them cfs/me I digress, then I thought food allergies was the main thing that I could master to get better as I found I was allergic to most foods and cutting them out as well as any preservative and most sugars even fruit helped. But, now I have times I can kinda eat normally. For me, so many things effect me, and there is no way to fix my genetic propensity now that I've hit the tipping point. I think the mold thing proves helpful to lots of people but I don't know if the mold avoidence thing works for the majority of people. I'ld like to try and spend some time in the desert but I"m in a semi arid climate and have been since I'm sick. It would be cool to move to Sedona anyways, so it would be interesting to see if that helped. But, then, you don't know if chemicals in the building or mold from plumbing the the home might cause issues. An unethical company did a botched mold remediation that made me so ill and set me back in a huge way.

I think you might find out rather quickly if it helps you. But be careful with death valley. I don't know how you are planning on doing it, but it's called death valley for a reason. I was in Flagstaff decades ago after getting sick and it was the only time since being sick that I felt like going jogging! Have no idea why. But, for the few days we were there just staying in a regular cheap hotel and doing normal stuff, I felt better. I'ld love to go back and see if it had the same effect on me but I'm too sick to travel right now.
 

antares4141

Senior Member
Messages
547
Likes
756
Location
Truth or consequences, nm
Travel does cost money if you are pretty sure you have issues with mold and don't have a lot of disposable money might be better to make longer term plans on finding better location, better housing. Good thing about out west is you have less rain which means less worry about things getting moldy from humidity. But if the buildings have any water damage issues like pipes, leaking condensate from air conditions, (less of an issue out west) leaking roofs, rotting wood, etc. Any past with these types of issues. You're going to have the same issue, which might be harder to detect cause it dries out so rapidly.

Other thing is we have lot's of fires out here, wind blown dust and airborne particulates because of the dry air. So leaving windows open is a double sided sword. The air is dry and many places altitude is high. How that affects us I am not certain about. And we do have valley fever which I read archiologist's are prone to. So it makes me wonder if it's a special set of circumstances that puts you at risk. Cause everybody breaths the dust out here because of the wind.

I live in a metal building I have pretty much total control over. I can remove panels and inspect for water damage. Still have issues with PEM, mostly. I push myself too hard and have to take a day or two to recover. I can do light work around the house for a couple of hours. Anything more than that and a crash is going to be imminent. The harder I push the more devastating the crash.

And I spend that time mostly sleeping and watching tv, morning the loss of valuable time I am running out of. Pondering over whether a life like this is worth it. Little more energy to do anything else.

And you have other variables that further confound trying to sort out what causes reactions. Food, chemicals, do you like to go out and socialize? Cause if you spend time in other peoples houses shops and restaurants you're going to be wondering whether, how much that is affecting you.
 
Messages
3,299
Likes
4,085
Location
Vermont, school in Western MA
I don't think that dryer necessarily is better. I don't think that all mold is bad. Whatever the known unknown variable we react to is, it seems to have more to do with proximity to civilization and some industries rather than humidity. People with this illness have done well everywhere from rainforests , the Caribbean , to the Rockies or death valley.

My reason for choosing the American west id not because it's drier but because there is more untouched wilderness out here.


I don't think anyone should feel obligated to do any treatment they don't want to do but I do feel that the locations effect should be studied and it should be treated as as valid a treatment as chemo or ivig , something that is paid for either by me/cfs institutions or insurance. Of course that is a pipe dream but that's the only ethical solution.

Building mold can be a problem, especially when cold temps make it hard to sleep inside, but it is not the only problem. Outdoor supertoxins are one of the main problems.
And again, not about dryness. Vegas, Tucson, Albuquerque, santa fe and phoenix are known to have problematic toxins in the outdoor air , for example, even though they are quite dry.
 

Judee

Senior Member
Messages
1,989
Likes
4,836
Location
Great Lakes
@antares4141, have you seen this product: https://www.airkrete.com/
This is different than another product called aircrete with a "c." Aircrete with a "c" is a lightweight building cement product but airkrete is a green building magnesium oxide insulation product that their website says is:
  • 1. 100% Fireproof
  • 2. No Toxic Fumes
  • 3. Scrubs CO2 out of the Air
  • 4. Negative Carbon Footprint
  • 5. Reduces Outside Noises by more than 75%
  • 6. Keeps Pollen & Airborne Allergens Outside
  • 7. Insect Deterrent
  • 8. Rodent Deterrent
  • 9. Increased Indoor Comfort
  • 10. Non Allergenic
  • ...and more. We were looking into it to insulate our home instead of the spray foam which we would be sensitive to. Our nearest contractor though is one state away and even though he says he will travel, he doesn't work with any of the energy incentive programs which means his quote would probably be too expensive for us right now.
 

Strawberry

Senior Member
Messages
1,672
Likes
3,689
Location
Seattle, WA USA
THIS is amazing! Filled out the information request!

I keep wishing I had a decent camera, like dslr or even a good phone camera, to film some of my improvments they can be dramatic in good areas, and quick
And THIS is even better information! I hope you can keep it going! Do you have to change locations often? Meaning, does the wind change make you guys have to change locations to feel better again? Or have you found a location you can stay at?
 
Messages
3,299
Likes
4,085
Location
Vermont, school in Western MA
And THIS is even better information! I hope you can keep it going! Do you have to change locations often? Meaning, does the wind change make you guys have to change locations to feel better again? Or have you found a location you can stay at?
Locations can always change in theory but I've found plenty of locations that were good almost all the time for months on end. Seasonal and weather changes together can create issues but those are somewhat predictable.

The problem is more being able to have a permanent dwelling that is not toxic and is warm in winter, in a good location. Lack of finances for good housing or a good trailer had been my main impediment to sustaining improvement. Although I suspect there is still a ceiling on my improvement due to having waited to do mold avoidance until I had cci , which may affect detox, especially while sleeping. Despite that, I think this has been the most effective treatment I've done since being bedridden. Iv saline produces almost as dramatic improvements but way shorter lasting and doesn't improve me over time, just over a few hours. Traction feels good and is diagnostically useful but doesn't produce the same level of lasting functional improvement as avoidance. But avoidance is really hard and expensive. It's like having self administered iv medication that you know works but it costs like thousands a month and isn't covered by insurance.

Blm land and most campgrounds are 14 day stay limits and many of the good locations get pretty cold in winter.
 

Strawberry

Senior Member
Messages
1,672
Likes
3,689
Location
Seattle, WA USA
So here is a curious thought. Do you feel you keep improving more over time? Or is it more the roller coaster ride of being in bad environments (whether cold or polluted) and then improving back to the new normal?

Since I improve so much in Hawaii, I always fantasized about staying there a month or two, but I do wonder just how far I really could improve. I need to make myself a plan for my future, and curious if avoidance is a long haul or short (ish) haul.
 
Messages
3,299
Likes
4,085
Location
Vermont, school in Western MA
I feel odd answering this as I am fairly sure I am not the norm, I feel my cci makes it hard for me to heal while I sleep. So my trend over time is not as quickly upwards as many others even with severe ME, like Ana Harris. So, I do fluctuate more day to day than over time but there are still very clear trends upwards after spending weeks in a pristine place regardless of confounders. For example the first pristine place I went to on mold avoidance journey I sat in good air for about 7 hours every day then went back to a decent campground for the rest of the day and I still mostly wasn't able to walk although my cogntivie and mood improvements were dramatic.

By the fall, after three months of mold avoidance and getting rid of a really contaminated can, I was able to walk about 300 yards without any pots or payback, carry on long conversations, and also tolerate slams from moldy buildings without them feeling disastrous. So, there is an upward trend over time it's just slower for me (I suspect because cci impairs csf flow which impairs detox )
 

antares4141

Senior Member
Messages
547
Likes
756
Location
Truth or consequences, nm
So here is a curious thought. Do you feel you keep improving more over time? Or is it more the roller coaster ride of being in bad environments (whether cold or polluted) and then improving back to the new normal?

Since I improve so much in Hawaii, I always fantasized about staying there a month or two, but I do wonder just how far I really could improve. I need to make myself a plan for my future, and curious if avoidance is a long haul or short (ish) haul.
I've over the years encountered a phenomenon I call "the honeymoon effect". It happens almost always anytime I am traveling. I attribute it to the change in environment but maybe just sitting behind a drivers seat for 12 hours a day is less taxing than when I am at home doing chores and what not. But I usually feel much better.

I suspect it's getting a respite from whatever types of exposures I am getting at home also. A totally different environment gives me relief from the chronic day to day exposures I was having to endure. But this never last's because I am going to start becoming sensitized to the new environment also.

I have stayed in my dad's place in NC which is extremely moldy, and felt better while I was visiting. But when I moved up there I got as sick as I have ever been. Even as much as my initial moldy house. Probably more. It took about three weeks and I had to crawl out of there on my hands and knees and pitch a tent in the back yard.

I rented a room in a brand new house in Tallahassee once and the first week or two maybe was ok but I declined rapidly after that. I later discovered that it had water damage. Even though it was only about 2 years old.

I bought a brand new rv and was mostly bedridden when I was in it. I later discovered entry points for water in 2 or 3 different areas. So there was mold right from the get go. And I bought it new!

I have always done the best when I avoid any kind of construction that is conventional. Because there is no way you can inspect behind walls or panels or the roof to see what is happening back there.

If there is water damage, mold growth of any kind, rotten wood, past or present in conventionally constructed buildings and rv's then based on 24 years of these types of encounters I suspect strongly I will be made worse. And the more time I spend in the situation the worse I will become.

And the insidious thing about it is that I never know when it is happening. It's many times like being placed in a warm pot of water and slowly turning up the heat.

So I just try to avoid conventional construction altogether. Which isn't easy cause you can't socialize and you can't shop and see dr's and renew your license, etc. etc. etc. without going into buildings.

Fortunately all these exposures seem to have a direct relationship to the amount of time I am in them, and whether i have repeated exposures. Like when I lived next to houses for support or when I was staying with my dad in NC. I would be in a trailer but would end up going in the house for different things. And over time I suspect this had a cumulatively negative effect on me. Even though I limited it as much as humanly possible.

My main concern with non conventional construction, is outgassing and chemicals from drywall and styrofoam board insulation. I had a home made truck camper constructed in a way I can inspect for mold I was staying in. I carpeted the floor and it was constructed out of foam board and I covered it with visqueen. I did better in that but still had issues.

And now the new metal building I have insulated with fiberglass batting and sheathed the inside with styrofoam foam-board panels. I can still sometimes smell the foam board but for the most part it seems to be a low emitter of voc. But while I still have ups and downs I seem to be best here. I was visiting my neighbor regularly against my better judgment and had to put that to halt cause I was doing way worse than I would have expected. And I do feel better now but there are so many variables and confounders I will probably never really know.

And I didn't even touch on the fact that there is all types of airborne dust and mold and pollen outside. And what effect this has on me I am really not sure.

And you also have to consider placebo and nocebo effects.

And how much of this is environmental and how much is other things like food sensitivity and pushing myself beyond my energy envelope is anyones guess.

And I also constructed a building out of metal studs and drywall that was inside a bigger metal building so it's never been exposed to water like happens to drywall inside of conventional buildings. And I did extremely poorly in the 3 to 4 year period I was in that structure for whatever reason. Chinese drywall was a big issue at the time. I don't know if that had anything to do with it or not. It did conspicuously out gas "drywall smell" for a long long time.

My opinion is to try to avoid structures that have had mold in the past or have ongoing mold. But good luck on that, probably way North of 50% of all construction has either had issues that were not remediated properly or has ongoing problems. And it's hidden so you can't see it, so you don't know whether and to what extent there is a problem. And they just are not an issue for normal people. Just like peanut butter and gluten isn't an issue for normal people.

But what makes it so difficult is authorities are still in abject denial. So everyone is on they're own. It's an impossible situation unless you are wealthy, and can afford to buy a plot of land somewhere where code enforcement isn't going to come along and say "you can't camp in your back yard, or you can't build a metal building and live in it"

Oh, and you have Hvac systems that have duct work that can have mold growth in them, and so can evaporator coils and drip pans that can have mold growing in them. So you better know how to service them and do it regularly, or have the cash to have someone do it for you.

It's an impossible situation!
 
Messages
3,299
Likes
4,085
Location
Vermont, school in Western MA
I've over the years encountered a phenomenon I call "the honeymoon effect". It happens almost always anytime I am traveling. I attribute it to the change in environment but maybe just sitting behind a drivers seat for 12 hours a day is less taxing than when I am at home doing chores and what not. But I usually feel much better.

I suspect it's getting a respite from whatever types of exposures I am getting at home also. A totally different environment gives me relief from the chronic day to day exposures I was having to endure. But this never last's because I am going to start becoming sensitized to the new environment also.

I have stayed in my dad's place in NC which is extremely moldy, and felt better while I was visiting. But when I moved up there I got as sick as I have ever been. Even as much as my initial moldy house. Probably more. It took about three weeks and I had to crawl out of there on my hands and knees and pitch a tent in the back yard.

I rented a room in a brand new house in Tallahassee once and the first week or two maybe was ok but I declined rapidly after that. I later discovered that it had water damage. Even though it was only about 2 years old.

I bought a brand new rv and was mostly bedridden when I was in it. I later discovered entry points for water in 2 or 3 different areas. So there was mold right from the get go. And I bought it new!

I have always done the best when I avoid any kind of construction that is conventional. Because there is no way you can inspect behind walls or panels or the roof to see what is happening back there.

If there is water damage, mold growth of any kind, rotten wood, past or present in conventionally constructed buildings and rv's then based on 24 years of these types of encounters I suspect strongly I will be made worse. And the more time I spend in the situation the worse I will become.

And the insidious thing about it is that I never know when it is happening. It's many times like being placed in a warm pot of water and slowly turning up the heat.

So I just try to avoid conventional construction altogether. Which isn't easy cause you can't socialize and you can't shop and see dr's and renew your license, etc. etc. etc. without going into buildings.

Fortunately all these exposures seem to have a direct relationship to the amount of time I am in them, and whether i have repeated exposures. Like when I lived next to houses for support or when I was staying with my dad in NC. I would be in a trailer but would end up going in the house for different things. And over time I suspect this had a cumulatively negative effect on me. Even though I limited it as much as humanly possible.

My main concern with non conventional construction, is outgassing and chemicals from drywall and styrofoam board insulation. I had a home made truck camper constructed in a way I can inspect for mold I was staying in. I carpeted the floor and it was constructed out of foam board and I covered it with visqueen. I did better in that but still had issues.

And now the new metal building I have insulated with fiberglass batting and sheathed the inside with styrofoam foam-board panels. I can still sometimes smell the foam board but for the most part it seems to be a low emitter of voc. But while I still have ups and downs I seem to be best here. I was visiting my neighbor regularly against my better judgment and had to put that to halt cause I was doing way worse than I would have expected. And I do feel better now but there are so many variables and confounders I will probably never really know.

And I didn't even touch on the fact that there is all types of airborne dust and mold and pollen outside. And what effect this has on me I am really not sure.

And you also have to consider placebo and nocebo effects.

And how much of this is environmental and how much is other things like food sensitivity and pushing myself beyond my energy envelope is anyones guess.

And I also constructed a building out of metal studs and drywall that was inside a bigger metal building so it's never been exposed to water like happens to drywall inside of conventional buildings. And I did extremely poorly in the 3 to 4 year period I was in that structure for whatever reason. Chinese drywall was a big issue at the time. I don't know if that had anything to do with it or not. It did conspicuously out gas "drywall smell" for a long long time.

My opinion is to try to avoid structures that have had mold in the past or have ongoing mold. But good luck on that, probably way North of 50% of all construction has either had issues that were not remediated properly or has ongoing problems. And it's hidden so you can't see it, so you don't know whether and to what extent there is a problem. And they just are not an issue for normal people. Just like peanut butter and gluten isn't an issue for normal people.

But what makes it so difficult is authorities are still in abject denial. So everyone is on they're own. It's an impossible situation unless you are wealthy, and can afford to buy a plot of land somewhere where code enforcement isn't going to come along and say "you can't camp in your back yard, or you can't build a metal building and live in it"

Oh, and you have Hvac systems that have duct work that can have mold growth in them, and so can evaporator coils and drip pans that can have mold growing in them. So you better know how to service them and do it regularly, or have the cash to have someone do it for you.

It's an impossible situation!
Good housing is incredibly difficult but not the only variable. Outdoor air matters a lot. Outdoor supertoxins are as much a problem as building mold
 
Messages
3,299
Likes
4,085
Location
Vermont, school in Western MA
So here is a curious thought. Do you feel you keep improving more over time? Or is it more the roller coaster ride of being in bad environments (whether cold or polluted) and then improving back to the new normal?

Since I improve so much in Hawaii, I always fantasized about staying there a month or two, but I do wonder just how far I really could improve. I need to make myself a plan for my future, and curious if avoidance is a long haul or short (ish) haul.
I guess the short answer is yes I improve over time not just day to day. But it's been slower for me because of cci. I still have low quality sleep because of impaired csf flow which is how the brain detoxes. Even with those challenges when I spend enough time doing extreme avoidance there's always an upward trend over weeks
 

antares4141

Senior Member
Messages
547
Likes
756
Location
Truth or consequences, nm
Good housing is incredibly difficult but not the only variable. Outdoor air matters a lot. Outdoor supertoxins are as much a problem as building mold
One of the things on my bucket list are to keep my building closed and run a high end air filter.

Haven't gotten around to that yet. Part of the problem is I cook and clean outside to keep from attracting rodent's to my new building I stay in. That and the wash machine is outside and I think I would go nuts if I were to just stay inside all day. Which I think would be necessary otherwise I have that variable to consider if and when my findings are ambiguous.

Being my building is metal it would be really drafty if I didn't put fiberglass batting in the walls. With the batting it still breaths a little bit which I am ok with cause I figure that keeps any voc's from building up when I have the windows shut.

I did spend about 2 weeks up north in black hills SD in January of 15. Idea was that most your airborne stuff isn't present when there is a decent sized layer of snow on the ground.

I did ok I guess, wasn't a panacea I was hoping for. The trailer I was staying in is virtually all aluminum and plastic but like most you still don't know what is lurking behind the walls. And there is no way to expose it with out ruining the trailer. So there was that variable.
 

Mouse girl

Senior Member
Messages
201
Likes
404
Yeah, I get the honeymoon effect thing. I've had that when I've been at a certain level of health and traveling. I think some is just the joy of travel for me and change of routine. If I'm too ill though, I don't feel better, I'll just be stuck in the hotel or wherever. And I've always found it just so crazy the amount of variables with this illness, as food and activity or weather or environment or even minor infections or viruses, or just the course of the illness can all cause such big impacts, it can be impossible at times to see what helps or hurts. I know in the past there were things I was doing that I was positive were helping me greatly but later on, when I changed things up, I have no idea if those things helped me at all or if it was just the illness waxing and waning on it's own. I remember seeing Dr Bell give a talk, he had great real data that one never hears about for some reason with this stupid illness and lack of good information. One thing I found so interesting was that he said overall, he saw no difference in how patients did with diet. He had junk food eaters and hard core meticulous eaters and he didn't find that it made a difference in how the patient did overall. I thought food was a huge issue for me for many years and it probably helped in some ways but not as much as I thought. I'm so over trying to figure out this thing after 25 years of "working at it" with nothing much to show for it but wasted time, energy and money. I wish I would have tried less, honestly.