Questions for Forebearance

[Lisa Petrison]

Thank you so much for contributing your experiences! That was great!

And it's especially great since I'm in the Black Hills of SD at the moment but thinking about driving back east toward Chicago over the next couple of weeks. I definitely will be looking at your comments carefully when I decide which routes to go.

I agreed with you about Nebraska starting to feel good about 10 miles west of Lincoln. That was definitely the case for me, when I drove through in November 2010.

That is very interesting about Wichita feeling bad to you part of the time and great the rest of the time. Do you have any idea what direction the wind was blowing when it felt bad?

Thanks, Lisa

[forebearance]

I am so sorry! I was brain impaired when I wrote the report on Wichita, and I was confusing stuff people have told me with my actual experiences there. I just figured out I've been sleeping on a poisoned mattress. Sigh.

There wasn't a plume during the three days I was there. What got me was there seemed to be a toxin residue on things that I am assuming came from some previous plume that had passed through town.

My beautiful new hotel room started out great. But then I turned on the heating unit. As the night progressed, the heater blew that infamous worst kind of toxin into the room every time it turned on. It only takes a miniscule amount of that toxin to do me in. So I woke up poisoned.

The room was on the south side of the hotel, so I was envisioning a plume that had come from the south at some point and had coated the outside of the heating/cooling unit with toxins.

I tried another room in the same hotel, and had the same experience. Then I tried a different hotel, and it had its own mold issues on top of whatever was in the environment outside.

I did love the new movie theater on the east side of town. I went to three movies in three days while I was there.

I stopped by the hotel next to Dr. Jernigan's office, where his patients often stay. I wouldn't have gotten much sleep there, but the rooms were very nice.

[Lisa Petrison]

That's really interesting about the toxic residue in Wichita. I wonder if it could have been left over from Winter 2009, when Stormy was having all those problems.

[Lisa Petrison]

RE Ft. Collins: Well, I guess if a place is not very good in the summer, then it's a good assumption that it likely will be even worse at the low point of winter. It's interesting to get that report though.

My husband just drove back to Chicago from California and said that the air quality in Sidney was good for him. Is there a hotel you like there?

I don't get the feeling that there are very many good hotels in Boulder, or for that matter too many good residences. I've had a hard time in Colorado.

Are you having a decent winter? Are you looking to settle down somewhere or just exploring? If you were going to pick a place to live now, based on what you know, where would that be?

[forebearance]

It's really interesting to me that I felt terrible in northern Colorado, but wrote off my symptoms as being "just me" because I went in with the belief that the air would be good there. I felt a lot of burning skin and heart pain while there. The GcMAF made me more sensitive and reactive to toxins, but also allowed me to sleep through them in a way I normally wouldn't be able to.

I loved the outside air in Sidney, and tolerated the Perkins well. I found the new Hampton Inn to be good, until I lay down on the bed. I've been having a problem lately with the mattresses and/or bedding in newer hotels. Something has been stinging me. Or maybe it's the water?? Whatever it was lowered my ability to tolerate the hotel. It was standable for a couple nights.

I'd like to try it again later, in case it was just some issue with me. Maybe a tick-borne infection has messed up my nerve endings. I get burned really easily by hot water now.

The only hotel close to Boulder that I considered was a Hampton Inn in Louisville. It was quite old. The older Hampton Inn in Longmont made me feel like I was having a heart attack. So I skipped trying the Louisville one.

I've been exploring this winter. Next spring I'd like to go back to the Rapid City, SD area. There were some log cabins there I think I might be able to stand if I could leave the windows open. The air was nice. The tap water there was delicious!

I'm not ready to settle down yet. So I don't know where I would go.

[Lisa Petrison]

I really liked Rapid City a lot too. I was there on what I guessed was a day that is about as bad as it gets -- in mid November when a very bad storm was setting in. It felt a little problematic, but if that's as bad as it ever gets, then it's pretty good in my book. And in summer it felt really good to me. I kept thinking while I was there that for people who want to just start a normal life, that would be a pretty good place.

Maybe we need to start a thread listing evaluations of hotels. Or maybe even a thread that is just "Hampton Inns and Hilton Garden Inns," since those are often (though not always) good. Of course, hotels can change over time, and can vary from room to room, but it might be helpful for people to at least have a starting point. Do you remember most of the places that you've stayed?

That's too bad about not having access to the computer with the Mold-Free Building info on it. Let me know if I can do anything to help out. I'm getting an increasing number of questions about this topic, so I think it ultimately will be of real interest to people.

Thanks so much for your contributions to this board!

[forebearance]

A hotel thread sounds like a good idea. Yes, I think I remember most of the places I've stayed.

In addition to not being able to update my website on home building, I'm going to lose the website entirely when I switch to Apple's new email service, iCloud. Without the iWeb application that I used to create the site, I'm not up to re-creating it on some other host. So I'm thinking of putting the info on a blog post at Phoenix Rising. Unless another solution comes along.

It's too bad, because I thought it was pretty cute. But at least moving it will give me a chance to update it.

[Lisa Petrison]

I'm currently in the process of working on still another board (how many is this now?). This one as a resource center of information about ME/CFS for media, doctors, patients and the general public. Once that gets up and running (I have a bunch of content written already), I will work on a section that will just be about biotoxins, to compile available info in the same way. (I think it also will be helpful for parents who are concerned about mold in their kids' schools too, for instance.) So if you were willing to put your home building info on that, it would great!

[forebearance]

As I was getting my car washed and vaccumed out, I mentioned to the car wash cashier that I had run into a bunch of mold in Las Vegas. She said "Oh, yeah." with great emphasis, as if it were common knowledge that Las Vegas is really moldy.

[Lisa Petrison]

Some of these desert places are so bright and sunny in summer that it fixes a multitude of flaws, I think. That's true for Las Vegas and St. George, anyway. Winters can be more of a problem.

[forebearance]

I could believe that. They must renew themselves every summer. I wonder if the buildings get renewed, too.

I'm tempted to check Sioux Falls SD in the spring to see if it has renewed itself. It was so fabulous last spring.

[Lisa Petrison]

Thanks for the great updates!

I'm wondering about the comment you made about Hilton Garden Inns having problematic mattresses. When this happens, is there anything you can do to fix the problem? For instance, what if you brought some kind of blanket to cover the mattress, and then put a sleeping pad on top of it?

[Lisa Petrison]

Interesting that your experience in Ann Arbor in 2012 seems to be the same as mine in 2010. It was so starling that sometimes I thought I must have been hallucinating it (though I actually really didn't believe that).

Did you find that it was bad there consistently, or did the really bad toxins come and go? The thing that really shocked me was that it was so bad even on a sunny summer day and that they seemed (from what I could tell driving through) to be blanketing the whole city. The toxins in some places in Tahoe are equally strong on occasion, but they seem to be more sporadic and scattershot.

Have you been anywhere else that you would say was as bad for you as Ann Arbor?

I really wonder what happened there to change things since 2008.

There is quite a lot of irony that the universities in both Berkeley and Ann Arbor publish so much about environmental toxicity but are sitting right in the middle of it. I don't think that this stuff is bad for just a couple of us.....it seems honestly really bad to me.

I went and took a look at your recent threads on ProHealth today. For some reason my account is disabled there and so I couldn't post. (I'm afraid to ask them about it for fear that they will tell me I did something objectionable and then go back and delete all my old posts. They're intact there, for the time being.)

Anyway, I am glad to hear that you managed to have an okay experience camping and that the MAF has been helpful for you. I would like to try MAF, if I could get a good source. There are a lot of articles suggesting that mold toxicity affects the macrophages, and so perhaps doing things to stimulate them makes sense in that context.

I was interested to see that you had been experiencing fibro symptoms, since to my recollection you didn't used to have that problem. I found that my own fibro has gotten really bad at various times since moving out of the bad house as well. I think that it's something that happens as a result of the detox process. Backed up toxins in the lymph can be very painful, and I think that maybe the reason that they get backed up is as a result of detox as well (e.g. as the toxins come out, they interact with candida or other fungi to produce a gummy mess that restricts lymph flow).

Does that sound at all right to you, based on your experiences? Do you still think that thyroid issues are related to your fibro? I've never thought of that before.

A list of things that I've gotten reports on as being helpful for fibro (and have experienced at least some help from myself): neural therapy, massage, acupuncture, exercise (especially running but really any sort of exercise), certain probiotics (especially ThreeLac but others as well including kefir), certain herbs (such as "Total Cleanse Lymph" by Solaray). Of course, not all of these are available or appropriate for everyone.

The other thing that I've done recently was start using Medicardium, which are EDTA suppositories. This has been the most life-changing thing that I've done other than avoidance. I seem to have loosened up a lot of metals in my system, and they just sort of sloshed around for a long time, keeping me almost bedridden for a while. After just a few Medicardium, I felt like an entirely different person, and increasingly I'm feeling like I don't have this disease at all any more. (Though I'm sure that with enough exposures, I could slip into it again.) I've done eight boxes so far (which is apparently equal to 8-10 chelation IV's). They are not cheap, but possibly they could be worth considering for you anyway since a lot of your issues seem to be similar to mine. Metals (maybe not just mercury) were a much bigger deal for me than I used to think, apparently!

That company also makes a product that is supposed to be like a coffee enema, but in suppository form. That is more expensive but more doable for many people, especially if they're traveling or living in an RV. And also one that is supposed to cleanse the gall bladder, which could be helpful for some people with this disease too.

Thanks very much for your Locations report. That was very interesting.