Discussion in 'Phoenix Rising Articles' started by Firestormm, Oct 15, 2013.
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Extreme Mold Avoidance is a technique based on the concept that if you can get totally away from the inflammatory toxins that are problematic for you, the body will stop masking to them and then immediately react to them when re-exposed, thus allowing avoidance of them.
This is the same concept that is used for people to be able to tell they are reactive to gluten. Just cutting bread out of the diet is not enough, because gluten is in other products too. But if people can get rid of gluten entirely for an extended period of time (e.g. a few weeks), many people find that they start to feel better and then get much worse again if they reintroduce it.
By this point, many hundreds of people have reported becoming hypersensitive to certain mold toxins through this exercise (e.g. after moving out of a moldy building and putting aside their contaminated possessions). And dozens of people have reported very substantial improvements or return to near wellness from classic ME/CFS as a result of being even more scrupulous with regard to small exposures to these toxins.
This is relevant to this article because those of us who have pursued this route to wellness have found that there is a toxin in the outdoor air in some places -- and not in other places -- that becomes much more prevalent in winter. And this drives people who are hyperreactive to that toxin and that live in those places into poorer health in the winter months.
The idea that some locations are better than others with regard to the presence of mold toxins is acknowledged by Dr. Sarah Myhill, an excellent clinician who apparently heard about the "Locations Effect" frequently enough from her patients that she started paying attention.
And again, in many places, this effect is especially pronounced in winter months. For instance, those ME/CFS sufferers who go on a trip from (say) Berkeley, California, to a Caribbean island in the winter very frequently report a remarkable improvement in health, even if they have no idea why or attribute the improvement to "lack of stress." (Put aside all the possessions contaminated by the outside air in Berkeley or whatever other problematic place during the vacation and the effect is likely to be even more dramatic.)
When i first started avoidance in 2008, I would have been bedridden and severely ill if I had spent the winter in a problematic place. In good places, doing avoidance, I was basically totally functional, including being able to hike for hours without post-exertional malaise. (At this point, after an enormous amount of detox and other healing, my system is more resilient and I am not affected quite as much by these toxins. Though spending the winter in a problematic place still is not something that I would do.)
Unfortunately, despite efforts, I have yet to be able to get any researchers to study this phenomenon. (My particular hope is to one day persuade Staci Stevens to substantiate it with her two-day exercise test.) But it is definitely not a trivial effect, and it's been demonstrated over and over again in people who have been diagnosed with classic ME/CFS by the top clinicians in this field. So regardless of whether people choose to pursue this route to wellness themselves, they should be aware of it.
Lisa Petrison, Ph.D.
Interesting stuff, slayadragon.
Yes, fall has hit me like a ton of bricks this year. I am a warm weather person -- my thermostat is always set high also. I get reynauds in my hands and feet. But the biggest problem is that I only feel human if I can get some sunlight. We recently had a week of cold, rainy days and it helped send me into a huge crash that I am trying to claw my way out of. I ordered a light therapy lamp and hope that will help get me through the winter.
Jody, how much vitamin d do you take. I take 5000 a day even though my previous (idiot) doctor told me that much was a bad idea even with my deficiancy. I know some people take as much as 10,000, and I'm wondering if I should do that for the winter months.
I must preface my answer by the fact that I am not a doctor and would not dream of trying to tell people what they should or should not do. I will tell you though that I also had started at 5,000 IUs six years ago, and gradually increased that over a couple of years, and found 10,000 to be what seems to work best. Less than that and I still deal with some low level symptoms characteristic of my autumn fall. Feeling of breathlessness, shakiness, like my legs weigh a thousand pounds, feeling like I need to fall down, more brain fog ... stuff like that.
Cold weather is my saving grace! I also sleep with my window open in temperatures from 50f-20f! I hate hot weather, it makes me tired, achy, and my head pounds..But I definitely perk up in the cold weather. I have more energy in the fall and winter, and i can even go on short trips out and walk more. I always love when the temp drops and I can function a little more.
yep............definitely affected in autumn.......and it usually lasts sometimes all the way up through Spring. My mood is lower and by Thanksgiving I'm downright depressed (more than usual)..Joint and muscle pain worse.......stiffness, etc.
I think I am going to try some vit. D...........I was actually going to start it in August thinking it might help ward off some of my symptoms by the time autumn came around.
Sounds very like my son, and a few other people with ME/CFS who I know.
If you try vitamin D I hope it helps.
In winter and autumn, I feel worse. That in-your-bones feeling when it's about to rain happens, even when it's not going to rain.
Sounds crappy, SickOfSickness.
Yes! Every year, until this year, I have April to October as relatively much better. I live for those months.
October to March was a series of recurrent flus, some three days-some three weeks. With pre-and post crashes and very few decent days. However my duties and responsibilities never ease up during those months.
Three years ago my doctor put me on prescription vitamin D. That year I had only three flus from October to March, which was a god send, but yet I was as tired as if I was sick throughout the winter. But not having the flu all the time was heaven!
I have had an additional two rounds of the prescription vitamin D in the years since. It helps tremendously. In between they put me on OTC D3, even though I took it before, in between and after the RX version with no visible effect and had continued low levels of vitamin D in my blood tests.
I have no idea why one seems to work and the other doesn't.
This year I had no spring or summer. That was hard. It is hard going into it every year. Every year I feel I never got enough done during the summer that I hoped. I fear getting even more behind.
It's very interesting that many people have either good spring and summers and others have good fall and winters! It's nice to learn of other people who have the seasonal reactions. I don't feel so alone.
This was a great read.
In the UK one of my times of the year is around November and December. That's the change from Autumn/Winter. My POTs symptoms are better as the cold weather sets in and it's usually before all the colds, flus and the winter vomiting bug hit me. Just after the clocks go back as well.
My original acute onset viral attack (the one that started ME) was in the summer.
I've tried the Caribbean holiday before (lucky for me twice) but although I am better by the sea (and with air conditioning) it doesn't make a huge difference.
Many ME patients feel better in the summer and relapse in winter. I have always presumed that higher levels of vitamin D in the summer from the sun was the explanation. But ME patients with high plasma levels of vitamin D and relapse in the winter made me wonder that something did not add up.
So I searched for answers and I found an article written by Professor Prue Hart, Department of Inflammation, Telethon Institute for Child Health Research, University of Western Australia:
Vitamin D supplementation, moderate sun-exposure and control of immune diseases
The article describes that sun exposure has an immuno suprressive effect that may alleviate disease symptoms in immune diseases. Is this a possibility in ME? I don't know, but I think it is worth while to learn a little more about photoimmunology.
Read more: "Photoimmunology" http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html
I'd be willing to go on a Caribbean holiday as a health experiment.
Thanks for the food for thought.
In some places, autumn pollens affect the immune system of ME sufferers.
In northern climes, autumn is a very different experience. In southern climes, it doesn't get cold, really, until maybe winter--and even then can get into the 60s in the day. And the sun is always really warming. So the body doesn't need to hibernate.
Glad to hear that you are well enough Jody. Those days are long behind me now sadly.
It's not a small thing to contemplate. Many PWME reading of the anecdotal reports of near cures from changing locations would find the barriers insurmountable. In my case it just didn't work. I was well enough to try it then but some people would find the upheaval too much even to consider it. We would need to arrange medical stretcher type transport for many.
I know what you mean. I would also find it a huge undertaking, and would be risking a huge crash just in making all the preparations that would be necessary. But it's nice to dream about the idea of going someplace else.
You can also try a Google Site Search
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