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Environmental causes of cci and related problems

GypsyGirl

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Yay! I'm so happy that it worked well for you too! I just realized this week that I no longer avoid situations where I have to stand up. I even stood for about 40 minutes without thinking about it or getting tired!
That's wonderful!

My doctors don't believe me either :( When I did conventional allergy testing for mold all of my ME/CFS and POTS-like symptoms got worse after the poke test. I had to go sit in a coffee shop in a grocery store because I couldn't manage to go stand at the bus stop to get home.

After that I convinced the allergist to do a blind poke test on me with mold samples and something else (I didn't know what) on different days. After one set of the blind test my ME/CFS symptoms worsened and I sat in a lobby chair with my legs up. For the second blind test I went to the bus stop without an issue and found myself jumping around to keep warm (it was winter). After that the allergist told me the first day was mold but he still didn't believe me :bang-head:
Eep! I know that what a patient feels is "subjective", but it's frustrating being in a body that reacts so strongly to mold, being able to replicate the same responses from mold (over and over again, even with blind tests like you did), and then being disbelieved - which is different than saying "okay, so something's clearly happening, but I don't understand what". That disbelief is confounding when all evidence points to something clearly happening when a particular trigger is introduced. I'm glad you found some appropriate solutions that are giving bits of relief. <3
 

debored13

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Nope. I live in Tucson. Health crashed a few months after moving here from mountains above Salt Lake City, where I could hike 3 miles on very steep hills. Before that I lived my whole life in Northern California, got sick there, and had remission there. The heat in Tucson and Phoenix are brutal to me.
Tucson is notoriously bad for mold I'llness people so I wouldnt just assume it's all the heat. It's like consisfently rated one of the worst cities in the southwest by people with mold illness. And I'm not talking about the buildings , mostly the outdoor air.
 

debored13

Senior Member
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Vermont, school in Western MA
Yay! I'm so happy that it worked well for you too! I just realized this week that I no longer avoid situations where I have to stand up. I even stood for about 40 minutes without thinking about it or getting tired!

My doctors don't believe me either :( When I did conventional allergy testing for mold all of my ME/CFS and POTS-like symptoms got worse after the poke test. I had to go sit in a coffee shop in a grocery store because I couldn't manage to go stand at the bus stop to get home.

After that I convinced the allergist to do a blind poke test on me with mold samples and something else (I didn't know what) on different days. After one set of the blind test my ME/CFS symptoms worsened and I sat in a lobby chair with my legs up. For the second blind test I went to the bus stop without an issue and found myself jumping around to keep warm (it was winter). After that the allergist told me the first day was mold but he still didn't believe me :bang-head:



Soooooo true! Cities even have their own microbiomes that impact the inside of buildings. I think I became sensitized to something in the last city I lived in but moving has helped a ton. (https://www.npr.org/sections/health...sible-neighbors-each-city-has-unique-microbes).
By the way, I've heard that the northern suburbs like happy valley, of Phoenix , are better microbiome wise
 
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By the way, I've heard that the northern suburbs like happy valley, of Phoenix , are better microbiome wise
Interesting! I have spend time in Carefree and didn't notice any difference from Phoenix, but maybe Happy Valley is better?

I live in an old adobe house in an older, flood irrigated neighborhood, though my lot is desert landscaped. My house feels like it has a great microbiome and I think all of the nearby greenery helps clean the air too. It was a very lucky find.
 

debored13

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Worse, of course, is Death Valley where the highest temperature ever recorded on Earth (134.1ºF at Furnace Creek Ranch, California, located in the Death Valley desert in the United States, on July 10, 1913), but did you know that the record high for AZ was recorded in Lake Havasu City, AZ (on the border with California, along the Colorado River, south of Needles) at 128ºF?
Death valley is actually getting sort of cold at night these days. I was recently in some blm land near lake Havasu City ans it was quite nice.
 
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Just found this video of Dr. Andrew Maxwell and thought it might be appropriate here:

The presentation argues that vagal nerve problems can trigger dysautonomia, leading to MCAS and eventually hypermobility that triggers structural disorders. He includes toxic exposures as a potential trigger for this process and of course, once MCAS becomes a factor, everything is an exposure. ME/CFS is barely mentioned but the video covers a lot of other issues that seem to overlap with it (dysautonomia, POTS, MCAS, hEDS, CCI, GP, etc.).

Also as a quick update to my previous post about my health - I am working full time, bicycling regularly, and feeling like I'm in remission. Even my mild exercise induced asthma went away so I think I must be doing something right. B12 shots and B1 supplements pushed me into remission in addition to living in a better place. I am continuing to experiment with OTC MCAS treatments and micronutrient supplements to see if I can get to a place where I am not dependent on B12 shots.