How do you camp? Mold avoidance trial

[citybug]

In the planning or hoping stage for a trip west from the east coast for a couple weeks with one moderate-severe ME, an MCS friend who can drive, and a lyme/ME friend. Since it would be June or later where can we go? Been reading the location boards. The deserts seem clearest. AZ, NM, NV or CA ?, hoped for shortest flight, will one be bearable in summer? Any recommendations?
So far thinking of flying somewhere and renting car and sharing space to save money, like a campground cabin where some can tent outside. Worried cabins will be booked far in advance. Since we each keep getting sick, may be at last moment.
I've never had a tent, so think about mercey springs or posada from lisa's recomendations, but mcs might overrule hotel. SF is long flight and long drive. One is leaning toward Phoenix, any good parks near there? Anyplace where food isn't too far?
What do we take? Has anyone made a list of essentials? It will be hard to carry everything on plane. Should I buy a tent?
Though it seems impossible something might work out and be a catalyst.
I don't know if i can do the difficult avoidance. I take hope from the avoiders seem to have missteps and still get well.

 

[impossible]

Im actually in the planning stages of making a trip to montana with approximatelyme. I will say it is a pain in the butt planning something like this. We are planning on driving so that we can have total control over our environment and avoid possible exposures in airports and planes.

Now that I know what my mold symptoms are I can identify places in the past that I have gotten slammed, and one of the worst ones was in a plane. If you fly, use a respirator. Find out if anyone knows anything about the airport you are planning to fly out of or into.

From what Ive read, I would say maintain a good distance from any cities and try not to be within an hour or two drive downwind if you can.

There is no way I would consider using a cabin, even if someone said it was fine last year it might not be this year. Hotels are tough for the obvious reasons so I am going to avoid those too.

You never how sensitive you are until you are "clear" of mold and detoxing/detoxed, at least in my experience. Erik preaches the same as well.

To get past the mcs in a tent I will just be pitching the tent without the rainfly under a tarp to allow for plenty of ventilation. I have noticed that when I stay completely clear for even just a few days, which is the longest its happened for at this point, my mcs is alot better.

We are going for the entire summer to give us the best chance at desensitizing enough to be able to enter the "normal world" again and be able to survive through minor hits without our overall condition getting worse.

I would definitely think one slam would easily undo two weeks of being clear, and could even leave you in a state worse than one you have experienced so far, so BE CAREFUL!!!

Recovery is usually much faster at that point though.

Try not to take anything with you from the moldy environment. At the very least use new clothing and sleeping equipment. Make sure to thoroughly wash anything you are taking that is or isnt new and airdry it out in the sun.

Run hard objects through the dishwasher. Make sure to thoroughly dry everything then put it into new trash bags to avoid contamination until you get where you are going.

For food we are going to cook all of our own and to avoid having to go indoors I am planning on calling ahead and making an arrangement with the manager of the store. Im going to have them gather and ring up our food and handle the transaction in the parking lot.

If you are going for the best possible environment go for the desert, as long as everyone knows they can handle heat. I cant, hence Montana. Plus I just love the mountains and being in a place that makes me that happy and relaxed will help too.

Im also purposely going to the mountains so that I will have a place to do the "epo walk". Gain at least 300 feet of elevation on foot at a pace that gets you breathing but you can still talk. It must be done starting from the elevation you are acclimated to.

It causes the body to release a substance that has some awesome anti-inflammatory effects in just the way we need it and is supposed to have some amazing results. Shoemaker uses procrit to simulate this.

Make sure to take something to detox with if thats your goal, like CSM or charcoal. Be careful to avoid hits once you start if you havent yet, the "sicker quicker" phenomenon is very real and its a mother %$@#*^.

I cant recommend any particular places in the desert with any real expertise, Im just not that familiar, though Death Valley sounds good. It is very "clear" and has various elevations that you can stay at to stay in control of the temp of your environment and will allow you to do the epo walk.

Its only a couple hours from vegas too, the flight would be much more affordable. I think I remember somebody mentioning that the vegas airport has some mold, cant say for sure though.

Hope that helps!





Edit:
For sleeping gear, do not use down, it supports mold growth. Use a synthetic filled sleeping bag if a sleeping bag is what you use.

Buy it well in advance and keep it outside and open as much as possible so it can off-gas before you use it. Multiple cotton blankets is an option.

Make sure to sleep on an insulated mat if you camp. It gets cold out there at night.

If I get a chance I'll post a vid of my camping setup and link to it. If it doesnt happen this week its gonna be a couple weeks.

 

[Forebearance]

I don't have any great advice, citybug, but I wish you all the best on your camping trip! You too, impossible.

Oh, maybe I have one tip. All the campgrounds I have stayed at will receive packages for you, if you are already staying there or you have a reservation coming up soon. So it is possible to order a few things, like a tent, and have them shipped there to meet you.

Although the first camping trip I did, I was too sick to do a lot of planning, so I just picked up a tent at the nearest Target. lol (note: it was a newer Target, not an old scuzzy one)

 

[manna]

theres a good film on youtube,,,"allergic to the 20the century" and one fella claimed to have recovered his health by camping in his garden. very therapeitic having no concrete and electricity. straight walls, stuffy air, houses make you weak till you're too weak to live anywhere but. if i could id have a big yurt in the garden and just cook and wash inside. healthiest i ever felt was living in a caravan in amsterdam

 

[searcher]

Good luck to both of you!

Lisa has had good luck with KOA cabins but I haven't tried them out.

I want to second @Forebearance's suggestion-- you can ship items to your campground or to a nearby post office so you don't have to carry everything on a plane and don't have to worry about items getting new mycotoxins on them (although there is always the risk that items were in a moldy factory or warehouse.) I usually get camping items from REI. LL Bean is a good option for clothing. There's not hard and fast list of items you need but I will see if I can share a list made by other people who have done experiments.

@impossible - I spent the summer in Montana two years ago. Please feel free to message me if I can help out at all.

 

[impossible]

Good luck to both of you!

Lisa has had good luck with KOA cabins but I haven't tried them out.

I want to second @Forebearance's suggestion-- you can ship items to your campground or to a nearby post office so you don't have to carry everything on a plane and don't have to worry about items getting new mycotoxins on them (although there is always the risk that items were in a moldy factory or warehouse.) I usually get camping items from REI. LL Bean is a good option for clothing. There's not hard and fast list of items you need but I will see if I can share a list made by other people who have done experiments.

@impossible - I spent the summer in Montana two years ago. Please feel free to message me if I can help out at all.

Will do, thanks! Hows the bay area for ya? Supposed to be a killer I guess.

 

[impossible]

To the op, most people dont NEED to do the crazy extreme mold avoidance. It could probably be of at least some benefit to everyone to some degree, but not necessary for most.

 

[citybug]

Thanks everyone. I really appreciate the specific sleeping bag tips, Target and everything else. We'll afraid we'll cross contaminate driving cross country and in one of our cars, also takes time out of the trip, but flying is hard.

 

[Dufresne]

Consider that chemical sensitivities might go haywire, making sleeping in a tent or sleeping bag impossible. That was the case for me when I conducted this experiment, and I don't normally have much of a problem with chemicals. I also know others who've reacted in this way.

 

[citybug]

What do you mean? better to sleep in hotel in bed, or on the ground, or regular blankets? Or detox will make sleep hard to get?

 

[impossible]

Once you start to clear the mold out of your system mcs shows up in alot of people, but it seems to only stick around for a short while as long as you're diligent about staying clear.

Could be the body unmasking a sensitivity thats been there all along, or maybe the immune system is easily pushed past its threshold, for anything, while its mobilizing and dumping toxins.

Just something to deal with for a short while. I'll be bringing some cotton blankets in case for that reason.

If mold is your problem, you have to reduce your exposure enough for these things to show up and once they do, you know you're on the right track to getting better. It seems like its just part of the process.

If you're that afraid of cross contamination, just have new stuff shipped there and wash it outside in the area you're staying in.

The fewer hits you take before hand the less sensitive and reactive you are going be, once you start detoxing. If you need verification of this, just ask approximately_me

She's going through hell atm bcuz she threw caution to the wind and got too many hits, sensitized, then got slammed. Cant even touch anything that was fine 2 days ago.

Im expecting that die down for her after showering and staying clear for a day or two. Thats been my experience too.

Just dont do anything that your body is telling you not to and be as diligent as reasonably possible about contamination and you'll do alright.

I personally think not driving a good car, thus forcing yourself into possible/probable exposure after just 2 weeks of detoxing and being that clear is downright insane.

 

[impossible]

Read as much of "The Role of Toxic Mold in CFS" as possible. Try to read 1/3 of it (its spaced for those that cant read paragraphs btw).. You will get a much better idea of how this works and will understand what is happening and what to expect as you are going through the process.

Dont be afraid. Its amazing how good you feel once you get there. Even just a few days makes all the difference in the world for me, I just have to be careful about feeling invincible.

 

[m1she11e]

Im in Florida but got sick originally in California over 30 years ago. I lived in Montana for over 10 years after California and got progressively worse. I only have considered mold and the environment in general since becoming nearly housebound while living in the wetlands of Florida. I recovered upon leaving the wetland area of Florida to a different area still in Florida to the extent that I could work part time and work out.

Currently I am in a new home (its not brand new but new for me) and I have been lucky enough to work an easier schedule mainly from home. Unfortunately within a few weeks of being mainly at home I have gotten worse. I am feeling the neurological symptoms coming on that I had me housebound at one point.

Going to the desert is not an option for me financially. I was very sick in Montana although Montana would be an option if I thought it would help. Someone had mentioned camping right here in Florida where they allow camping on the beach. They told me mold cannot grow on the beach but Im not too sure about that. Anyone know if a camping on the beach experiment would even be worth it?

 

[antares4141]

I've had this theory for a while that maybe it's not just mold in the air but everything including common hay fervor type allergens.
So camping on a beach would appeal to me. Ocean breeze wouldn't have much pollen or dust. (Desert has a lot of both) Actually got to the point of setting a tent up on a spoil island near tarpon springs, fl. But the logistics of excluding variables like the sail boat I used to get there and store supplies were so impossible gave up. Living in the desert now in a large metal building with a building inside of that building made out of drywall and metal studs. Still get pretty sick here in truth or consequences, nm. Which leads me back to the other normally innocuous allergens theory. Tried running air filters but problems there also. Can't stay inside 24 hours a day. And other variables. I seemed to get sick drinking the mineral rich water out here and switched to distilled. Food allergies haven't got them wired in yet. Can't help but wonder if distilled doesn't pull toxins out of the body. It really seems to help. Had Heavy metal screen but I think the tests were conducted poorly. Don't really trust any of the places that advertise on the internet. Want to see a regular toxicologist but they have been trained to dismiss mcs as psychological so I don't know how much good that will do. I never bought into the mycotoxin theory as a mechanism for mold related illness but do know mold makes me sick without question. I don't adhere to anything but the most basic avoidance regimens. Housing blankets, wouldn't pick up a used sofa from a thrift shop. I just think it is an immune reaction as opposed to toxins. Want to camp in Montana in the middle of winter cause if you watch allergen indexes on weather sites they drop down to zero when there is measurable snow on the ground. Tried it one time as far north as raton, nm in February while the temps fell into the single digit territory there was not much snow on the ground. Other variables I suspect kept me sick also. After 18 years of this I don't know weather anything I do will pull me out of this steady downhill decline I have been on. Still haven't decided to throw in the towel certainly think about it but I guess even though I can't work and I can't play I can still sit in front of the computer and do things that take a minimal amount of concentration. Camping can be expensive and because it's not a long term solution hard to determine how much good it does. I would think a month minimum. And those pesky variables, how much expense & effort do you want to take to eliminate them all.

 

[antares4141]

If you go to the desert in June it will be hot! Phoenix is generally about 5 to 10 degrees hotter than truth or consequences in June. I've seen it as hot as 120 there but usually only around 105. You would need an open canopy to stay out of the sun but still get a breeze. Also a good water supply so you can dip towels in water and put them on your head to keep from getting heat stroke. I would think September or April would be better but would be cold at night than. April probably better than September cause sept is at the tail end of the monsoon. So maybe May and August August being in the middle of the monsoon season which starts in July. May or august would probably translate into highs in the mid 80's and lows in the high 50's. Rain is another issue if you happen to get wet and can't get out of the rain, it's freezing even in the summer cause of the high evaporation caused by low humidity. Death Valley would appeal to me some time other than June because some areas are below sea level and I sometimes wonder weather the elevation here in t or c (4800) give me some of my symptoms. That and all the weeds and dust. Which is why I want to go to Montana in the middle of the winter. I am looking at camplite trailers. They seem like a good choice because they use no wood in the construction. I haven't gotten as far as pricing them but I'm guessing there way higher then the others with wood in them. Also worried how leak resistant they are. Wind would be an issue also, here in t or c we sometimes have sustained winds as high as 30 and gusts up to 70. Windy season is best I can remember march April and May. April and May being the windiest. But you can never really tell so you really just have to go and hope for the best. Poisonous snakes, can't go anywhere at night without a flash light. There usually the most active in summer but I've heard reports of them in March and October so you almost always have to be looking where you step.