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Environmental causes of cci and related problems

Messages
70
I bought that book when it first came out and am embarrassed to say that I never got a chance to read it. I had severe MCAS (where the final trigger was toxic black mold in a former rental) but it is now in remission from IVIG.

I was curious (only if you remember), what did Dr. Afrin say was the connection between connective tissue and MCAS. I have chronic neck pain (from other issues) but never felt it was connected to my MCAS (but am now curious)?!

Don't be embarrassed, there is no need to read up on medical stuff when you are in remission :) We have so much else to deal with. Congratulations on getting better! That is awesome!!!!

Dr. Afrin says that mast cells are present in connective tissue so MCAS could be correlated with connective tissue problems. I read it when I still had brain fog but I don't remember him saying much else about it. It seems like something that needs more research.

I found a more recent paper on EDS and MCAS that has Afrin as a third author: https://www.ehlers-danlos.com/pdf/2...tics_Part_C-_Seminars_in_Medical_Genetics.pdf

I have been to Phoenix twice (both times were over 20 years ago) but I was curious if you have (or had) POTS b/c Phoenix is so HOT :fire: ... Do you tolerate the hot weather okay?

When I was at my worst I had a lot of issues with temperature regulation and what felt like orthostatic intolerance. I suspect that I would have been diagnosed with POTS if I could have found a doctor that was willing to test for it. I tried to self treat by upping my salt and fluid intake which helped a bit. My POTS like symptoms mostly went away with mold avoidance.

I was well adapted to heat before I got sick as I loved going to hotsprings, Japanese style baths, and Korean saunas. I didn't have air conditioning for two (not consecutive) summers in St. Louis and I had successfully increased my heat tolerance by bicycling in the summer heat and humidity. I think that some of that heat training carried over even after I developed ME/CFS and MCAS.

After getting sick I found that using saunas helped me recover from crashes and from MCAS events so I joined a Russian bathhouse in Seattle. It built up my tolerance to heat and cold quite a bit. It also probably stimulated my immune system and my vagus nerve enough to reduce some symptoms.

Now that I'm in Phoenix I find that my body is most comfortable when the ambient temperature is between 80 and 85. The triple digit heat hasn't hit yet this year, but I was here in July last year and managed okay :)

I agree. I am also now very interested in the connection between neurotoxic reactions to fluoroquinolone antibiotics and all of these connective tissue issues (not specifically just CCI but in general).

Definitely! It seems like there is so much to learn here!
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I have cci and I believe there’s an environmental cause

After all of this I think that environmental triggers were absolutely contributing to connective tissue problems for me.

Hi @marlunette -- Thanks for sharing your story, and welcome to the Phoenix Rising!

@debored13 -- Environmental exposure were definitely a huge factor for me. I did a stint of planting trees one winter, and was exposed to some kind of unknown chemical at the time. They would try to burn the fields before planting, and if they couldn't get a good burn, they'd spray it with a chemical to get it to burn better.

Those exposures were a huge traumatic event for my body, and I believe were a catalyst for my digestion and neck issues (likely including CCI) to become dramatically worse. -- After slowly recovering over a period of about 10 years, I reached the point where I could work part time. I then got exposed to some intense jet fuel fumes at an airport in 1994, which I feel just about did me in (felt like all the rhythms in my body shut down for about 20 minutes). I never fully recovered from that.

I started having a lot of problems digesting food, especially fiber.

My wife for many years had a very vulnerable neck (unlikely CCI), which became very sensitive to the foods she ate. Occasionally, when going out to eat, she would order some cheesecake for dessert. She loved it, but knew she would pay a price for eating it, as it consistently affected her neck and would soon after have to visit her chiropractor. So I think various foods can most definitely affect neck issues as well, probably including CCI.

We've both done a lot of things to improve our neck issues over the years, and have both gotten significant improvements. She had a sense of vulnerability in her neck for many years, but no longer experiences that. I had major neck issues, but daily reflexology exercises, self-massages, self-acupuncture, Gua Sha, and other modalities help me keep my own issues at manageable levels.

Even though I'm so much better, I still often experience a sense of being "strangled", especially when my Orthostotic Intolerance kicks in (feels like there's a clear connection between the two). Thankfully, that's been so much better since I began regularly applying a combination of DMSO and Magnesium Oil to my neck.

I think doing this significantly reduced much of the pressure and inflammation in my neck, head, and brainstem. I posted fairly extensively on that experience in the following thread. It seems logical to me that DMSO was improving my OI because it was likely affecting (directly or indirectly) my (presumed) CCI as well.

POTS Inexplicably Improves After Topical DMSO Applications
 
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frozenborderline

Senior Member
Messages
4,405
I am SO grateful that Jen and Jeff shared their stories. It helped me realize how much worse I could get and it made me worry that I would do irreversible damage to my neck if I stayed in Seattle. I have NO idea if that is possible and maybe I was just being paranoid, but it pushed me to move to Phoenix and start recovering.
Your story is really interesting. Based on my symptoms and dr bolognese s acceptance of my case (I have not had my appointment with him yet) I think that cci is likely. I also have reactivity to toxic mold and have been living in a house w it for about 10 years?? Although I think lyme was my first trigger for this illness and my reacitictu to mold was probably lower beforehand. I am not ruling out surgery as an option at all , as my quality of life is really, really low. But I think in my case I have a bad feeling about recovering from surgery in the same house that made me sick/made my connective tissue lax in the first place. But navigating travel/moving while this sick will be difficult. A mold sabbatical while this sensitive to sun/in this much pain, will be difficult , but I don’t see any other way in my case.
I don't think moving to Phoenix is going to be the answer for most people with these problems
ive actually heard that Phoenix has sort of a bad biome from all the chemical use and generally poor housing stock but I could see it being so much better than Seattle’s that improvement is experienced regardless. Plus, at least you’re close to more pristine desert there. If you ever experience more problems w your house or health you could take a trip camping in The Mojave without having to travel too far?
. I had severe MCAS (where the final trigger was toxic black mold in a former rental) but it is now in remission from IVIG
I think about your case a lot, as I’ve been living in a home with toxic mold For a long enough time that I really think it may have permanently messed my immune system up and damaged my connective tissue to the extent where I will need treatments to repair both. There are really no other options for me right now besides being driven in a van to a pristine area, which basically requires getting out of the northeast entirely, unfortunately. I wish daily that I’d taken mold more seriously before it had taken such a toll on me. There were many clues about my mold reactivity earlier in my illness but I didn’t take it that seriously partially Bc of the idea of environmental illness being so disturbing to me. Now I am in an impossibly difficult situation of needing to travel while having cci and being in pain and basically bedridden
 
Messages
70
@debored13 --

My wife for many years had a very vulnerable neck (unlikely CCI), which became very sensitive to the foods she ate. Occasionally, when going out to eat, she would order some cheesecake for dessert. She loved it, but knew she would pay a price for eating it, as it consistently affected her neck and would soon after have to visit her chiropractor. So I think various foods can most definitely affect neck issues as well, probably including CCI.

We've both done a lot of things to improve our neck issues over the years, and have both gotten significant improvements. She had a sense of vulnerability in her neck for many years, but no longer experiences that. I had major neck issues, but daily reflexology exercises, self-massages, self-acupuncture, Gua Sha, and other modalities help me keep my own issues at manageable levels.

Even though I'm so much better, I still often experience a sense of being "strangled", especially when my Orthostotic Intolerance kicks in (feels like there's a clear connection between the two). Thankfully, that's been so much better since I began regularly applying a combination of DMSO and Magnesium Oil to my neck.

Thank you for sharing this! I feel like there is so much more to learn. I will read your other post and look into options. Unfortunately acupuncture is off the table for me because of metal allergies, but I am interested in other ways to improve my neck!
 
Messages
70
Your story is really interesting. Based on my symptoms and dr bolognese s acceptance of my case (I have not had my appointment with him yet) I think that cci is likely. I also have reactivity to toxic mold and have been living in a house w it for about 10 years?? Although I think lyme was my first trigger for this illness and my reacitictu to mold was probably lower beforehand. I am not ruling out surgery as an option at all , as my quality of life is really, really low. But I think in my case I have a bad feeling about recovering from surgery in the same house that made me sick/made my connective tissue lax in the first place. But navigating travel/moving while this sick will be difficult. A mold sabbatical while this sensitive to sun/in this much pain, will be difficult , but I don’t see any other way in my case.

That sounds really rough! I am sorry you are going through this and have to face these tough decisions. When I decided to pursue mold avoidance my first step was to just stay somewhere relatively better even if it wasn't perfect to see how I felt. I felt too overwhelmed to think and make decisions in my old environment.

Ana Harris did something similar of finding an in between place to recover a bit before deciding what was next. She wrote about it on her blog but I can't find it now. It might be an interesting approach for recovering from surgery if you can find something local that is better without worrying about it being the perfect mold free place.

When my husband and I were living in an apartment with mold he kept having recurrent skin infections that his body just could not clear. Once we were out, the infections cleared within a month. He didn't get ME/CFS the way I did but it still seemed to mess with his body's ability to recover from even minor things.

ive actually heard that Phoenix has sort of a bad biome from all the chemical use and generally poor housing stock but I could see it being so much better than Seattle’s that improvement is experienced regardless. Plus, at least you’re close to more pristine desert there. If you ever experience more problems w your house or health you could take a trip camping in The Mojave without having to travel too far?

You are very right! It's definitely not the classic mold avoidance locale. There are a LOT of moldy buildings here though because people don't build for rain even though they get heavy rains in August. I have family that lives in Tempe in a 60 year old house built with concrete blocks that I do well in. Since I'm particularly sensitive to damaged drywall, the concrete houses and traditional adobe houses are great.

My husband and I decided on Phoenix as it was a place where my health is reasonably good AND there is a decent job market for his profession (and mine if I ever get back to work). I think I'd probably recover more quickly in a more pristine place but I am hoping I can get some benefit just by visiting those pristine places :)
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I am interested in other ways to improve my neck!

Hey @marlunette -- Are you ready to go to work? :angel: Here's a LINK to a POST that describes a reflexology technique that works really well for my neck, and which I do every day for 1-2 minutes.

Unfortunately acupuncture is off the table for me because of metal allergies

Somewhat ironically, I just read the following post today on a DNRS thread...

Did not want to to extreme mold avoidance so started DNRS, First 2 weeks the terrible taste in my mouth disappeared ( after 2 years) and I was able to wear earrings that I had been “ allergic “ to for years,
 
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Gingergrrl

Senior Member
Messages
16,171
Don't be embarrassed, there is no need to read up on medical stuff when you are in remission :) We have so much else to deal with. Congratulations on getting better! That is awesome!!!!

When I bought Dr. Afrin's book in 2016, I wasn't in remission and was still very ill and really wanted to read it but never got past the first chapter (that was more what I was embarrassed about)!

Dr. Afrin says that mast cells are present in connective tissue so MCAS could be correlated with connective tissue problems.

I have heard this before you mentioned it and it is such an interesting idea.

When I was at my worst I had a lot of issues with temperature regulation and what felt like orthostatic intolerance. I suspect that I would have been diagnosed with POTS if I could have found a doctor that was willing to test for it. I tried to self treat by upping my salt and fluid intake which helped a bit. My POTS like symptoms mostly went away with mold avoidance.

That is interesting and (in my case), moving away from the mold did not improve my POTS. Although all of it started (including POTS) shortly after moving into the rental with the toxic mold. I had already had severe Mono from EBV ten months before my ex-husband and I moved into that rental so my immune system was already weakened. I think it is much more dangerous for someone to be exposed to toxic mold/ mycotoxins who already has had prior hits to the immune system like I did.

I was well adapted to heat before I got sick as I loved going to hotsprings, Japanese style baths, and Korean saunas. I didn't have air conditioning for two (not consecutive) summers in St. Louis

I do not do well with any type of sauna or heat and cannot live without air conditioning!

Now that I'm in Phoenix I find that my body is most comfortable when the ambient temperature is between 80 and 85. The triple digit heat hasn't hit yet this year, but I was here in July last year and managed okay :)

I keep my apt between 72 to 74 degrees and would really struggle with it warmer than that.

Definitely! It seems like there is so much to learn here!

I have now been posting here for five years (literally as of today :)) and there is always new information to learn. I think that is part of why I enjoy reading and posting here (in addition to the emotional support that we all give to each other).

I think about your case a lot, as I’ve been living in a home with toxic mold For a long enough time that I really think it may have permanently messed my immune system up and damaged my connective tissue to the extent where I will need treatments to repair both.

I don't want to sound overly naive but I don't believe that the mold has permanently messed up your immune system. I did believe that it had permanently messed up mine (so I really relate to this) but ultimately with the right treatments, my immune system has re-booted itself away from the insane allergic reactions and autoimmunity (although the true test will be if this maintains itself after I stop Rituximab and my B-cells grow back). So, I guess I don't know for sure :xeyes:

Now I am in an impossibly difficult situation of needing to travel while having cci and being in pain and basically bedridden

Can you do anything to improve the air quality in your room like keeping a window open for fresh air or getting a HEPA filter?
 

Malea

Senior Member
Messages
260
Here's a LINK to a POST that describes a reflexology technique that works really well for my neck, and which I do every day for 1-2 minutes.

Hey @Wayne , do you do that technique while laying down or sitting?
(Sorry if that was already answered in the other thread, I didn’t manage to read all answers to that post)
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Hey @Wayne , do you do that technique while laying down or sitting?

I've done it both ways, but I normally do it laying down. It seems some people have a problem reaching their toes, but it's really not a problem for me. So it's easy for me to take 1-2 minutes a day to do it, which I can do while watching TV, or any number of other things.
 

Daffodil

Senior Member
Messages
5,875
In 1994 McGarry study and 2005 Chia study, enterovirus (Cox B3) was found in the brainstem of patients.
way back i think in the 80s? they did autopsy in the UK on 2 women who commit suicide with ME/CFS (if i remember correctly). they found active herpes virus infections in the brain stem, maybe it was 90s. 2 doctors were involved. one was an indian name, may have started with a B lol sorry thats all i recall
 

frozenborderline

Senior Member
Messages
4,405
Can you do anything to improve the air quality in your room like keeping a window open for fresh air or getting a HEPA filter?
. I’ve been doing that stuff for awhile. In the spring the outdoor air went from generally okay to bad. I would’ve thought I was crazy, as standard mold doctors don’t talk about outdoor biotoxins/air/biomes, if I hadn’t found many people to have this experience. So, getting outdoor air outside my house not an option as it is bad. I tried a hepa and I think it helped w dustiness but my understanding is they don’t filter out all mold spores, but even more importantly they don’t filter out mycotoxins themselves. There are really few options /refuges in the whole northeast and I think that my doctor basically says to get out of new England’s entirely if you are severely ill, as moderately or mildly sick people may be abke to tolerate the amount of trial and error necessary to dind a good home in New England. It’s seems like even the bad swathes in the west coast are basically like the best places in New England. It’s whole other thing.
I don't want to sound overly naive but I don't believe that the mold has permanently messed up your immune system.
Maybe, maybe not. But since I will be spending all my money on avoiding mold and may not be able to pay for as much specialist medical care, let’s hope :). I do think however that I stayed in a very moldy house long enough to get medium term damage, and long enough for it to degrade my collagen so I now have cci. That’s too long and I don’t known if the damage can be Undone
 

Gingergrrl

Senior Member
Messages
16,171
Maybe, maybe not. But since I will be spending all my money on avoiding mold and may not be able to pay for as much specialist medical care, let’s hope :).

I wanted to reply further and hope it didn't sound like I was at all minimizing the severity of exposure to mycotoxins, especially tricothecenes from black mold. What I was trying to say was that I don't believe that the mold/ mycotoxins will permanently damage your immune system if you are ultimately able to get away from it and get proper treatments.

In my case, the levels were so high (following extensive mold testing and several failed remediations) that we had no choice but to move and get rid of our belongings. I do not believe that I ever would have recovered had we stayed in that rental and that my anaphylaxis would have continued. It was only in moving and stopping the exposure to mold/ mycotoxins that I was able to begin treatment (nebulized glutathione & gentle mold binders) and ultimately treatments for autoimmunity (which I could not have tolerated when my MCAS was severe).

So even in a case as severe as mine (re: mold/ mycotoxins), my immune system was able to re-set after getting away from the mold and getting the proper treatments. That is what I was trying to say yesterday but I feel like I didn't explain it well. I do not know if there is a connection between mold/ mycotoxins and CCI but in my case the mold led to extreme allergic reactions/ anaphylaxis and MCAS.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I keep my apt between 72 to 74 degrees and would really struggle with it warmer than that.

Wow, I can't imagine the electric bill here in the summer with the thermostat that low! If this house would even get that cool: most houses in Tucson (and probably Phoenix) have very little insulation. Electricity must have been cheap in the past! I leave the thermostat on 79 in the summer. It's still too hot for me, but the sound of the A/C drives me nuts when it's on constantly, which it is if the thermostat in 78 or lower in the late spring, summer and early fall (about 5 months of the year). Well, that's why I long to return to California!
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Without wanting to over simplify a phenomenally complex disorder..can strengthening neck and shoulder ligaments and chiropractic/nutritional intervention cure stenosis and instability without surgery?

Caveat: I didn't watch the whole video.

It is possible, depending on the cause of the stenosis, to improve it with certain exercises. The picture shown at the start of the video shows a uniformly narrowed canal, which would be a congenital thing. However, the things that usually cause spinal stenosis are disc herniation, with backwards pressure on the cord, osteoarthritis, with bony spurs from vertebrae (and sometimes from ossification of the disc) pressing on the cord, hypertrophy of the ligamentum flavum just behind the spinal canal (happens due to inflammation in the area over time), hypertrophy of the facet joints (little joints that connect the vertebrae) and sometimes slippage of one vertebra in relation to its neighbor (spondylolisthesis).

If spinal cord compression results primarily with the spine in certain positions, because of bad posture, or weak lumbar or abdominal muscles, then improving muscle tone and posture could reduce the impact of spinal stenosis. With decreased irritation, some of the inflammatory changes might regress, such as ligament or joint swelling. Similar ideas could work in the cervical area.

I don't know if nutritional interventions can make a difference, except perhaps by reducing inflammation.
 

Gingergrrl

Senior Member
Messages
16,171
Wow, I can't imagine the electric bill here in the summer with the thermostat that low! If this house would even get that cool: most houses in Tucson (and probably Phoenix) have very little insulation. Electricity must have been cheap in the past! I leave the thermostat on 79 in the summer.

I should explain that it doesn't get super hot in my apt and I don't think I have ever seen it reach 79. But it can reach 76 or 77 which is too hot for me so I keep the a/c where if it hits 74 then it turns on but if it is lower than 74 it turns off (like an "auto" switch that I keep at 74). If I really feel overheated, then I turn it down to 73 or 72 and put ice packs on the back of my neck to cool down. I would not survive in Phoenix or Vegas (and one of my best friends from high school lives in Vegas and said it is going to reach 117 this summer :xpem:).

It's still too hot for me, but the sound of the A/C drives me nuts when it's on constantly, which it is if the thermostat in 78 or lower in the late spring, summer and early fall (about 5 months of the year).

My a/c is pretty quiet and I buy my own filters on Amazon that are better quality than what my apt building provides. In my former rental (the one with the toxic mold that we left in 2015), the mold was spread throughout the unit by the HVAC system (among other problems) so I am super careful now with any related to a/c!

Well, that's why I long to return to California!

Come back... :hug:
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
and one of my best friends from high school lives in Vegas and said it is going to reach 117 this summer :xpem:).

Well, fortunately Tucson usually runs a few degrees cooler than Phoenix during the hottest time of the summer, probably because we're about 1500 ft higher in elevation. Phoenix can easily hit 117, but 117 is the record high for Tucson, set in 1990. Phoenix's record high is 122, also in 1990 (must have been a hell of a summer!). According to Wikipedia, Phoenix's average highs are the highest in the US, with typically 107 days above 100ºF (including most days from late May through early October).

Still, in 2013, Tucson was in the 100s for 39 consecutive days, including all of June. The record was set in 1994 with a total of 99 days where the temperature was either at or above 100 degrees.

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?

What blew my mind, though, was some of the amazing temperatures on this chart on Wikipedia. 121ºF in Alton Kansas in 1936! There were a lot of crazy high temperatures in the Plains and Midwest in the 1930s, especially during the heat wave of 1936. No wonder the Dust Bowl happened!

My a/c is pretty quiet

So is ours, but even quiet fans drive me buggy!

Come back... :hug:

Thank you, I'd love to! But, since we're on the topic of the 1930's, how's about a little Woody Guthrie?

"...Oh, if you ain't got the do re mi folks you ain't got the do re mi​
Why you better go back to beautiful Texas​
Oklahoma, Kansas, Georgia, Tennessee​
California is a garden of Eden, a paradise to live in or see​
But believe it or not you won't find it so hot​
If you ain't got the do re mi"​

And I ain't got it!
:p
 
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GypsyGirl

Senior Member
Messages
165
Location
North Carolina
When I was at my worst I had a lot of issues with temperature regulation and what felt like orthostatic intolerance. I suspect that I would have been diagnosed with POTS if I could have found a doctor that was willing to test for it. I tried to self treat by upping my salt and fluid intake which helped a bit. My POTS like symptoms mostly went away with mold avoidance.

I was well adapted to heat before I got sick as I loved going to hotsprings, Japanese style baths, and Korean saunas. I didn't have air conditioning for two (not consecutive) summers in St. Louis and I had successfully increased my heat tolerance by bicycling in the summer heat and humidity. I think that some of that heat training carried over even after I developed ME/CFS and MCAS.

You're the first person person I've heard of who had POTS occur and disappear similarly. I was diagnosed with POTS that largely went away with mold avoidance (though it comes back with exposure and a few other triggers). And was well heat-adapted before. Loved those 90 minute hot yoga classes. My POTS docs have been a little disbelieving of the mold trigger at this point, so it's nice to see it's not just me.

. I’ve been doing that stuff for awhile. In the spring the outdoor air went from generally okay to bad. I would’ve thought I was crazy, as standard mold doctors don’t talk about outdoor biotoxins/air/biomes, if I hadn’t found many people to have this experience. So, getting outdoor air outside my house not an option as it is bad. I tried a hepa and I think it helped w dustiness but my understanding is they don’t filter out all mold spores, but even more importantly they don’t filter out mycotoxins themselves. There are really few options /refuges in the whole northeast and I think that my doctor basically says to get out of new England’s entirely if you are severely ill, as moderately or mildly sick people may be abke to tolerate the amount of trial and error necessary to dind a good home in New England. It’s seems like even the bad swathes in the west coast are basically like the best places in New England. It’s whole other thing.

Maybe, maybe not. But since I will be spending all my money on avoiding mold and may not be able to pay for as much specialist medical care, let’s hope :). I do think however that I stayed in a very moldy house long enough to get medium term damage, and long enough for it to degrade my collagen so I now have cci. That’s too long and I don’t known if the damage can be Undone

You're not crazy about the outdoor mold issue. I haven't been as sensitive to outdoor molds as indoor molds and manage in humid NC all right as long as my living space is ok, but know someone who's had to move out of her current home. ...her house doesn't have mold, but she's reacting to an outdoor mold on particular trees in the neighborhood/region that's worked its way in (in both air, lawn, and slowly absorbing into the home). Luckily, she had a very mold-aware doctor who's dealt with the issue. The doc said sometimes entire local ecosystems can be affected and it's best to move outside the area of those trees since she and her children are reactive to it.

Dealing with mold was such a frustrating thing, but you're on the right path. Getting out of mold was like night and day. So much can turn around when you remove that major stressor from your body.
 
Messages
70
You're the first person person I've heard of who had POTS occur and disappear similarly. I was diagnosed with POTS that largely went away with mold avoidance (though it comes back with exposure and a few other triggers). And was well heat-adapted before. Loved those 90 minute hot yoga classes. My POTS docs have been a little disbelieving of the mold trigger at this point, so it's nice to see it's not just me.

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:

The doc said sometimes entire local ecosystems can be affected and it's best to move outside the area of those trees since she and her children are reactive to it.

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).