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

[frozenborderline]

I think that if someone does a two week sabbatical in pristine place with none of their stuff, and then comes back home with no reaction, it is unlikely environment is going to be a major problem for them

I don't think many people have done that though. And I do think that even if environmental factors arent a problem for everyone this doesn't mean they shouldn't be studied, given the huge percentage of peopole they are a problem for

 

[antares4141]

"it can be impossible at times to see what helps or hurts" .

Yep! I don't know how many times I thought I hit on something to later find out it really didn't have any appreciable effect.

I did a thread on gluten challenge if you search through my post's. I was sure strict avoidance helped me and many times attributed "reactions" to my letting it slip into my diet. I've been eating gluten since august of 2018 and not sure weather it's affecting me or not.

Interesting thing is I did have some very prominent symptoms that have appreciably subsided after I quit gluten in 2011.

Bloating, severe fatigue after meals and feeling like I was being poisoned, super high heart rate and low blood pressure, blisters inside of my mouth on lips, nueropathy in arms, faint feeling like there was glass inside my stomach. Off the top of my head.

So why I don't get any of these symptoms back, (the intensity they were) I somewhat have these things now. I don't know.

Did two blood test's, one back on 11/19 and still negative.

Interestingly I did go from junkfood eater to hard core meticulous. I think the dividends that pays are not so much illness related but long term overall health related. But the returns over time I suspect are very appreciable.

Specifically I try to include a lot of vegetables and fruits. Almost completly cut out refined sugars/carbs. This would include things like pie crust which is like putting pure sugar into your mouth. And I cut out on the other end of the spectrum refined fat's like cooking oil, butter, things like that. So no more corn chips, chocolate, which are high in both these evils.

I was on a french fri diet for about 3 years starting back in 2018 and now all my veins are showing in my forarms and my blood pressure is noticeably higher. I definitely don't buy into all the hype that "fat's are good for you"

Like everything else I think moderation is key. Lot's of fiber from plants!


And I have managed to keep my bmi substantially under 25 which I suspect helps a lot also.

 

[Strawberry]

For more perspectives on avoidance and how long it takes to heal I really recommend this piece : https://anaharriswrites.com/reflections-on-3-years-of-mold-avoidance/

I read Ana's story, thank you for the link! It makes me really wonder if it is mold. She talked at one point about "remasking" and she sounded like me. I just have a hard time believing it is mold as I'm so much less sick than you and others. But I'm looking into buying a van now for at least weekend camping.

Keep getting healthier!

 

[frozenborderline]

I just have a hard time believing it is mold as I'm so much less sick than you and others. But I'm looking into buying a van now for at least weekend camping.

Plenty of people on the mild end of the spectrum have benefited from avoidance. In fact id go as far as to say that's the best subgroup to benefit, since it's before you get permanent damage like cci , , and when it's easier to do.

 

[Strawberry]

Now I actually have a couple of minutes!

since it's before you get permanent damage like cci , , and when it's easier to do

Definitely! That is one thing I need to jump on now as my neck (and collagen issues) is slowly getting worse. Dr K gave me a referral for the MRI a year ago, but my company sold and I haven't had time to take off under the new owner for medical purposes, so I never got it. If my new boss doesn't do something SOON about my workload, I'll quit and sue him. Not a nice thing to say, but it's truth. I can't believe how long I have put up with no lunch breaks. (Unless I'm pissed, like right now ) But at my age, quitting means I may never get re-hired. I know too many people in their 50s that are very well qualified and can NOT get hired. Sorry for my work rant......

My fear is that I feel better for the avoidance period, then am WORSE when I go back to work. But I'm desperate to try it. If I get any worse now, I will not be able to work at all. But if I can keep a mild improvement, then it is all worth it.

I've over the years encountered a phenomenon I call "the honeymoon effect". It happens almost always anytime I am traveling.

I definitely tried attributing it to the honeymoon effect, but have been able to rule that out over and over. Normally my plane lands about noon or 1 pm. If I get to the grocery store that first night, It has to be BRIEF and I'm sitting on my seat most of the time while my daughter grabs a few essential items. If I go day 2, I can grab some items myself, but am sitting on my portable seat, or draped over the shopping cart while my daughter does most of the shopping. By the end of the week, I can shop for an hour and leave my seat in the car. Take the groceries home and help my daughter put them away, help her clean up after me, and buy her anything else she needs before I go jump on my plane home. And as soon as I get a sniff of jet fuel? I literally feel my leg muscles turn to jello. If it isn't the better air, then the only thing I can think of is my cat. But we didn't have a cat for many years of my illness. But yes, poor little girl makes everyone's nose run. So she is a possibility as to part of my problem, but not the whole problem.

@antares4141 I've been following your story also. I really enjoy when you talk "materials" that you used on your house.

Oh one more question! @debored13 Do you feel your neck (cci part) is also getting stronger? Or just your reactions to molds and chemicals are improving and overall body energy strength improving?

 

[Strawberry]

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.

I agree with that one! 25 years for me also. Well, the sickness and fatigue part. My stomach issues started a couple years earlier, and my muscle issues could have started even in my teens. But I think everything I have tried was useful (even if it didn't help) and I won't stop searching for any tiny improvement. Van camping is my next attempt.

And speaking of van camping, my kitty harness arrived just now. Wish me luck getting it on her! It is my first step towards van camping. I expect her to spaz out as I'm putting it on her, then she will probably play dead until I take it off. So many cat videos on the internet prove that is the norm! She will probably get pissed off at me and I'll sleep alone tonight. But tomorrow morning she will love me because she wants food. And I have thumbs.

 

[antares4141]

@antares4141 I've been following your story also. I really enjoy when you talk "materials" that you used on your house.

I guess you have seen my building already? https://antares4141.wixsite.com/website
I have tried a lot of other things. Home made truck camper, Hexayurt, drywall building inside of a metal building, living under a carport in fl for almost 3 years next to my original moldy house. Living in NC next to yet another moldy house. I was lucky to find a trailer park in El Paso that didn't balk at my home made camper. I also traveled in a subaru sedan out west before I decided to migrate out here. I took all the seats but the drivers out so I could sleep and camp in it. I should add them to the website sometime.

 

[Strawberry]

Yeah, I've seen it. You must be feeling pretty good in that location to be able to have built that. I'm probably going to do the cargo van for my first attempt. I have people that want to build it out for me, but I doubt they understand chemicals and VOC etc. I'm still not convinced mold is my issue, but I know chemicals are! I'm protecting against mold just in case.

 

[Seadragon]

I am following this thread with interest.

Maybe slightly off topic but I get similar improvements to those described here near to and especially right next to the ocean. The effect is more pronounced for me in a dry, warmer climate, eg when I was able to vacation in Spain or Portugal a few years ago, than here in the UK, maybe because of humidity/dampness, although I do benefit significantly here by the ocean also.

This thread from a while back suggests others have this "location effect". https://forums.phoenixrising.me/threads/mold-or-oxygen-feel-better-in-hawaii.12329/

I have not been to a desert but I also had noticeable positive and very quick improvements (similar to how I feel by the ocean) in the mountains (not in the small valley towns, only up high) in Switzerland and also in Norway on vacations when I was less sick.

I know for sure that air pollution in cities is a big issue for me. Like @Strawberry said, I feel my body wilting and feeling instantly sicker again when I come home from visits in healthier environments.

Hoping to relocate within the next two years as soon as we are financially able to.

 

[antares4141]

. You must be feeling pretty good in that location to be able to have built that. .

I feel very lucky. It wasn't always that way.

 

[antares4141]

I am following this thread with interest.

Maybe slightly off topic but I get similar improvements to those described here near to and especially right next to the ocean. .

I often thought that would be great cause out here in the desert we have all the dust. But usually coastal places are going to be wet and have all the issues that come with that. I tried camping on a spoil island few hours once. Got really bored and decided I wasn't going to be able to make it work without really giving it a chance.

 

[frozenborderline]

Maybe slightly off topic but I get similar improvements to those described here near to and especially right next to the ocean.

There are reports of great improvements from clean sea air, especially in the Caribbean, Yucatan, and some other areas. There are apparently negative ions from sea breezes that can be cleansing. I think unfortunately many of the coastal areas in the us are uniquely toxic because we have built megalopolises there --LA, Boston, NYC, thebay area... But in theory coastal areas can be great. Obviously they can be problematic. For housing, but housing is not the main factor in healing. You should join the Facebook group "location effects in the Caribbean and worldwide"

 

[Strawberry]

I wonder if improving near the ocean could point to chemical toxicity (like I think I am) vs. mold toxicity (like @debored13 and @antares4141) helping when you go to the desert.

I want to ask the two of you a question. Or anyone else verified mold avoider. When it rains hard (or a long mechanical car wash), my car gets water in the heating ducts and makes gurgling noises until it dries out. When I was gone for a week to my daughter's graduation in December, apparently it rained quite hard, and even my carpets were damp. It took quite a while to get the gurgling to go away, and for the carpet to dry. For a few days, I was reacting when I climbed in my car. But after it dried out, I've been fine since. Would either of you ever be able to climb in my car? Knowing it had wet carpet in December? Or would you immediately start plummeting downward?

 

[frozenborderline]

I wonder if improving near the ocean could point to chemical toxicity (like I think I am) vs. mold toxicity (like @debored13 and @antares4141) helping when you go to the desert.

I doubt this a lot. Many people do well in the desert AND high altitude pine forests AND the Caribbean. The common variable is pristine air free of the "known unknowns" or "unknown knowns" that make us sick. There is a high degree of similarity in terms of how people heal in pristine wilderness areas. With buildings things get more complicated bc of mcs and stuff. And people can react to wildfire smoke or pesticides to a greater or lesser degree. But overall , the people doing well in desert and doing well on beaches are not different subsets. It's simply that most of us in America don't have many pristine beaches to try out.

one confounding variable is sun sensitivity. In severe me/cfs patients this could be severe enough to mean someone would crash in tropical places. But it tends to go away with enough avoidance. Besides that, I'd think most me/cfs patients would do well in the Greek islands, or the Caribbean

 

[frozenborderline]

I want to ask the two of you a question. Or anyone else verified mold avoider. When it rains hard (or a long mechanical car wash), my car gets water in the heating ducts and makes gurgling noises until it dries out. When I was gone for a week to my daughter's graduation in December, apparently it rained quite hard, and even my carpets were damp. It took quite a while to get the gurgling to go away, and for the carpet to dry. For a few days, I was reacting when I climbed in my car. But after it dried out, I've been fine since. Would either of you ever be able to climb in my car? Knowing it had wet carpet in December? Or would you immediately start plummeting downward?

I have no idea.

Probably I'm reactive enough that I couldn't tolerate most active mold growth in cars, but I am on the fairly reactive end of the spectrum so that may not mean much.

It's really something that has to be figured outvia experience and trial and error , there are no hard answers without personally sniffing out your vehicle

 

[antares4141]

I wonder if improving near the ocean could point to chemical toxicity (like I think I am) vs. mold toxicity (like @debored13 and @antares4141) helping when you go to the desert.

I want to ask the two of you a question. Or anyone else verified mold avoider. When it rains hard (or a long mechanical car wash), my car gets water in the heating ducts and makes gurgling noises until it dries out. When I was gone for a week to my daughter's graduation in December, apparently it rained quite hard, and even my carpets were damp. It took quite a while to get the gurgling to go away, and for the carpet to dry. For a few days, I was reacting when I climbed in my car. But after it dried out, I've been fine since. Would either of you ever be able to climb in my car? Knowing it had wet carpet in December? Or would you immediately start plummeting downward?

Depending on how old your car is you may have a replacible air filter. Personally I hate youtubng things like this cause a lot of times it's not necessary to do a long winded video when a few paragraphs and photos on a blog could achieve the same thing. But however you google it google how to change it and check to see if it get's wet after an incident like the car wash.

Suspect the fan that pulls the air would be after the air filter. So the water would have to completely saturate the air filter before water got past the fan where you would possibly have gurgling noises. I had mice make a nest on top of mine once. So they were peeing on it but also smelled like something was decaying inside of it.

I fixed that, you can see how here:
https://www.toyotanation.com/threads/cabin-air-filters-and-mice.401430/page-4

It could be a plugged condensate hose. Water collects in the bottom of the evaporator housing under the dash usually and drains out this hose. That might be part of my problem also. When I cleaned out that housing described in the link above I might have inadvertently somehow clogged the hose even though I was checking it constantly to make sure that didn't happen.

Then the carpet started getting saturated from rain or the condensate, or both. I kept leaving the windows open to try to dry it out. And kept getting caught in yet another storm.

Didn't know it at the time but toyota carpets are padded with an absorbent rubber foam. So no amount of fans running and window drying would fix the problem. The foam was like a sponge and the carpet had to be taken out hung on a line and air dried.

So I took the carpet out and then the plug in the ignition to the alarm system was making a poor connection , it wouldn't start and I couldn't figure out what the problem was for a long time. So it's sat since.

What you have to be really careful with carpet is that the carpet will raise the humidity in your vehicle with the windows shut. To compound things I left it in North Carolina for three weeks and when I came back mold was visibly growing on everything.

So don't let the problem get ahead of you.

You can probably google how to remove the carpet. People like us looks and style are not that important. Survival is. So you might want to just take the carpet out and ether leave it out or make sure it is dry then put it back.

 

[antares4141]

Mice was a nasty problem fortunately pretty specific to my toyota. The top photo is where the filter goes and all the nesting material mice gathered on top of my filter. Driving at least once a week can prevent this problem. I let it sit again in NC for about three weeks and they set up shop in there.

It was a nasty problem nobody would want to have to deal with.

The round housing under where the filter goes is for your fan. Not sure how enough water would get into something like this to make a gurgling sound. And it's likely it would short out the motor before this would happen.

SO I am still scratching my head as to where your gurgling sound is coming from.

 

[frozenborderline]

How many people here have checked out this map and does it match up with your experiences https://forums.phoenixrising.me/thr...-find-this-lines-up-w-their-experience.79633/

 

[Strawberry]

For me, there are no markers where I do have improvement. I live in the Seattle WA area, and there are lots of bad markers there (which I agree with), but I do well on the Peninsula, and the ocean, which has no markers at all. Also, there are very few markers up on the Northern part of the state, just south of Vancouver Canada. My nephew is trying to get me to buy land next to him. While I haven't camped on his property, my sister in law lives further up that valley and I do feel better there, although I've never spent more than 2 days there.

And Hawaii (Oahu), where I improve most, has no markers. There are only markers on Kailua Kona on Big Island Hawaii, which is where all the Kona coffee is grown, so LOTS of chemicals sprayed. Also, the volcano often covers that part of the Big Island with VOG (volcanic smog). I haven't been there for over 30 years, but not surprised that Kailua Kona is bad.

So for me, the map doesn't show the areas I feel improvements at all....

 

[frozenborderline]

For me, there are no markers where I do have improvement. I live in the Seattle WA area, and there are lots of bad markers there (which I agree with), but I do well on the Peninsula, and the ocean, which has no markers at all. Also, there are very few markers up on the Northern part of the state, just south of Vancouver Canada. My nephew is trying to get me to buy land next to him. While I haven't camped on his property, my sister in law lives further up that valley and I do feel better there, although I've never spent more than 2 days there.

And Hawaii (Oahu), where I improve most, has no markers. There are only markers on Kailua Kona on Big Island Hawaii, which is where all the Kona coffee is grown, so LOTS of chemicals sprayed. Also, the volcano often covers that part of the Big Island with VOG (volcanic smog). I haven't been there for over 30 years, but not surprised that Kailua Kona is bad.

So for me, the map doesn't show the areas I feel improvements at all....

That all makes sense.

I just think the map isnt big enough yet. I think the areas with lots of reports tend to be accurate, but there aren't enough reports for many areas

From mold avoiders I've heard almost all good things about Hawaii with some exceptions wrt the vog and also housing (but it has mild enough climates maybe one could sleep outside)

I'd love to go to Hawaii

My doctor said Puget sound is a micro area that has good air in the PNW