reality television show 24 CFS/ME patients move out to desert

[antares4141]

@antares4141
A few more thoughts:

All very good points. Thanks!

 

[Lipac]

All very good points. Thanks!

me on most days + Phyllis Diller hair= Horror Film.

 

[Lipac]

I keep thinking....
Have you seen the Lyme Disease documentary " Under Our Skin"?
It's worth watching.
(It won awards.
Made NO medical difference...)

 

[Sushi]

The elevation would be a problem for many unless they already live that high.

One of the ME/CFS specialists said that in his experience, 5000 feet was about where his patients did best. I am at 5000 ft and didn't have any problem adjusting from sea level.

 

[antares4141]

What are you planning for food ( since you need like organic and food/ fresh food to remove any other factor to the equation.

There is plenty of land to plant vegetables on. I did it the first year I was out here but had so many other things that took priority it got bumped. Grew tomatoes, lettuce, coriander, peppers, egg plant I think. Tomatoes and lettuce and coriander where the most successful. There would be a communal kitchen so I thought that it would be to everyones benefit to pitch in and make meals together.

Organic is pretty expensive and I always go for conventional hoping it's as safe as authorities claim it to be. So I guess it would depend on how many would want to spend the extra money or not. I suspect most would be willing.

 

[Lipac]

One of the ME/CFS specialists said that in his experience, 5000 feet was about where his patients did best. I am at 5000 ft and didn't have any problem adjusting from sea level.

@Sushi ... Wow... Really? ( Shoot, I could be in MX now rather than snowbound up north). That's surprising.

I had a rough time at 20 working at a camp at 10,000', and I was a distance runner then.
When I was 49 and had been sick about 7 years I spent a summer in Casper WY. I could only function by taking oxycodone without constant air hunger. I've always lived at Sea level.

I read some discouraging threads here about people trying to just get across the Rockies to the low Sonoran desert.

I was looking into trying Lake Chapala MX on the advice of women alone over 55 who had been there. That was 2016. I'd been well three years. It's at about 5-6000'.

The reason I didn't try was because I kept coming across articles about how badly neurological diseases do at high elevations.
I knew I had neuropathies, balance issues, vision problems and Lyme. Wasn't thinking about CFS.

(Have you always lived at high elevations?)

Btw, at the camp when I was 20, I was the most fit woman, but sicker than anyone else; even the middle aged visitors from the East. Finally after 4 months I could run and felt really good.
I had POTS from about 7-30. Really severe as a child and teen. Maybe it's an inherent thing in some people?

 

[Sushi]

There is a big difference in how one feels at 10,000 ft and 5,000. I had terrible altitude sickness in the Himalayas.

I kept coming across articles about how badly neurological diseases do at high elevations.
Have you always lived at high elevations?

No, I have lived most of my life near sea level.

 

[antares4141]

I keep thinking....
Have you seen the Lyme Disease documentary " Under Our Skin"?
It's worth watching.
(It won awards.
Made NO medical difference...)

No, but I'm going to check it out for sure.

 

[SueJohnPat]

Hi. We are in our new house. For the most part I have been sleeping outside on the porch. I have also been going to the forest for 2 hours most days. I am following Erik Johnson’s advice about going out into the wilderness as much as possible,
I am able to hike about 4 miles with no pem if I am in the forest .

If I spend at least 2 hours a day in the forest I have 5he energy to cook dinner and clean up in general. The extreme mold avoids thing is impossible for me because of my family . I have been slowly slowly overall improving but I can become incapacitated if I am indoors too long when the barometric pressure is low.


Also I notice if the barometric pressure falls and there is a storm I must stay out on the porch or outdoors or my symptoms become unbearable. This is what Erik said about mold releasing spores when the barometer falls.

I know this seems totally nuts. I am high functioning in the wilderness and if we do go I would be a happy to help others who may be less able bodied.

 

[antares4141]

Is it arid in Lake Chapala MX? Would be a great place if so!

I've never experienced altitude sickness too my knowledge. My symptoms go up and down so much I've learned all I can do is speculate what caused it.
Is it the food I am eating? Do I need to go on a low fodmap diet? Did gluten slip into my diet somewhere? Am I sensitive to something else?

Is it the dust in the air? Is it too dry out here? Is it from the altitude? Is it pollen in the air? Is it natural mold outside?

Is it VOC's from building products I am exposed to like drywall? Is it the trash my neighbor is burning. Is it the gasoline I got on my hands? Exhaust fumes I was exposed to? The store I was shopping in? Dust from running a lawn mower or weed eater? The perfume somebody was using?

Is it from over exertion? PEM

Am I depressed? Is it stress?

Those are just a few of the questions I ask myself over and over again.

 

[antares4141]

Hi. We are in our new house. For the most part I have been sleeping outside on the porch. I have also been going to the forest for 2 hours most days. I am following Erik Johnson’s advice about going out into the wilderness as much as possible,
I am able to hike about 4 miles with no pem if I am in the forest .

If I spend at least 2 hours a day in the forest I have 5he energy to cook dinner and clean up in general. The extreme mold avoids thing is impossible for me because of my family . I have been slowly slowly overall improving but I can become incapacitated if I am indoors too long when the barometric pressure is low.


Also I notice if the barometric pressure falls and there is a storm I must stay out on the porch or outdoors or my symptoms become unbearable. This is what Erik said about mold releasing spores when the barometer falls.

I know this seems totally nuts. I am high functioning in the wilderness and if we do go I would be a happy to help others who may be less able bodied.

I would recommend to anybody who can find a house with a porch that has some semblance of privacy to pounce on it. Any time you can spend outside is probably helping to reduce your symptoms.

I never followed air pressure, I was always concerned about how dry it is. When it's dry particles are more likely to be airborne. And I see this as a possible issue of living in an arid environment.

When it rains it cleans the air. The flip side is your probably going to have a lot of mold growth after this. But high humidity and lots of surface foliage is probably going to bring down the prevalence of all kinds of different particles?

 

[SueJohnPat]

I would recommend to anybody who can find a house with a porch that has some semblance of privacy to pounce on it. Any time you can spend outside is probably helping to reduce your symptoms.

I never followed air pressure, I was always concerned about how dry it is. When it's dry particles are more likely to be airborne. And I see this as a possible issue of living in an arid environment.

When it rains it cleans the air. The flip side is your probably going to have a lot of mold growth after this. But high humidity and lots of surface foliage is probably going to bring down the prevalence of all kinds of different particles?

We are loving the porch. My son is sleeping out there tonight. He took my spot.
I am getting a swing bed . It is January and we got electric blankets. It is going up to 55 degrees tomorrow and we are fixing up the hot tub. It is realtively private. It seems to be a much more prevalent toxic effect in the winter months in the Philadelphia area anyway. This seems weird but it goes along with the information I read on Paradigm Change. I took everything with a grain of salt at first but a year into my own experience is that this crazy sounding stuff is true.

 

[frozenborderline]

Re altitude. No generalizations I think. If the biome is good it's actually somewhat common for me/cfs people to thrive at high altitude. It was a concern for me but then i went to the Grand canyon rim and felt great. And then even higher , up to 10000 feet and felt great. But my suspicion is if you have major infections or current exposures the altitude will be harder to tolerate. I thought I had altitude sickness in ojo caliente but I was just in a moldy Airbnb and an area w cyanobacteria, maybe the mold hit harder bc of slight hypoxia from the altitude. And I'm a CCI, severe patient w pots. Many doctors would advise against altitude but I thrived. So I don't think one can generalize about it being unsafe or bad for most cfs patients.