Mast cell activation syndrome is not what it seems

[MCASMike]

I went to a new dentist who told me my teeth were all looking good then took a look at the xray and said Hold on you've got peridontal disease. I have no visible receding gums or bleeding gums.

I have to go for three monthly cleans with the hygenist and use inter dental brushes every day.
I use a different brush in between the good areas and bad pockets so as not to spread the bad bacteria around. I dip the wee brushes in antibacterial mouthwash in the areas that are a bit smelly (indicating bad bacteria) and don't do this in the other areas as I don't want to kill the good bacteria. I also floss.

I've been chewing on the Japanese probiotic Miyarisan which i Believe has made a big difference. I don't believe all cases of MCAS are cause by this but worth ruling it out as it's quite an easy fix.

Thanks. Forgot to mention the major changes I've seen since starting the MCAS protcol (aspirin/loratidine, minus the H2 antihistamine since my gut seems okay, but with luteolin supplement and now rutin): legs aren't as weak/painful, sleep is a lot better on most nights, I can now swallow (I was unable to eat toasted bread because I could not swallow it unless I ate tiny amounts at a time), no laryngospasms any more, a lot less "head fog," what my doctor said was likely rotator cuff in my left arm is now more or less normal, the dry cough is mostly gone (not present most days at all), and the eye issues are 95% better with the ketotifen drops. I can walk up stairs (2 stories) without getting breathless, my hearing is no longer especially sensitive, and I'm not as sensitive to light either. I seem to be less sensitive to perfume but try to avoid major exposure, and I have less rash type problems. I still seem to need quite a bit of sleep, average of 10 hours a night most of the time.

 

[Strawberry]

I'd been taking jjust one in AM...I will try that and report back! Glad to here your mustering a bit more umpff!

Well it’s probably only 2% but I’ll take it!

 

[Strawberry]

@MCASMike how much aspirin? I think I need more of that too, but afraid to up my dose without talking to a doctor. I take one baby aspirin in am and one pm.

 

[Rufous McKinney]

Forgot to mention the major changes I've seen since starting the MCAS protcol (aspirin/loratidine, minus the H2 antihistamine since my gut seems okay, but with luteolin supplement and now rutin): legs aren't as weak/painful, sleep is a lot better on most nights, I can now swallow

I am going to have to more seriously figure out what all this Protocol is.....

your improvements sound impressive, can I share? Enough to go around?

 

[MCASMike]

@MCASMike how much aspirin? I think I need more of that too, but afraid to up my dose without talking to a doctor. I take one baby aspirin in am and one pm.

For a while now I've taken half a 325 tablet with breakfast, then a quarter of one with the next three meals, then another half before bed (with a good amount of water).

 

[MCASMike]

I am going to have to more seriously figure out what all this Protocol is.....

your improvements sound impressive, can I share? Enough to go around?

One key point here is that I do very little, physically, and have noticed that "any little thing" can lead to symptoms, so if you are someone who likes to jog around the block, I would caution about thinking a very basic protocol might allow one to get back to such activities. I think you should read Afrin's book, which is where I got some of my ideas from. I take a 10 mg loratidine in the morning and another before bed and as to aspirin, for a while now I've taken half a 325 tablet with breakfast, then a quarter of one with the next three meals, then another half before bed (with a good amount of water). I use ketotifen eye drops when necessary, and I use a cromolyn nasal spray before bed. I also use Mucinex when there is phlegm in the throat that I just can't seem to disloged. I have luteolin extract and now some rutin extract, and also take vitamin D3 and some other supplements, including ascorbic acid (which is supposed to help the ruin get utlized). I eat one meal each day with Mexican oregano and celery seed (two food items with a lot of luteolin), and I drink a plain tea (using black and green tea bags; I make a pot and it lasts a few days). Of course, doing this, it's difficult to know if one or some combination of these is most effective, but when I added luteolin that definitely seemed to help with some symptoms. I started with H1 antihistamines, which got rid of the "head fog," and then added aspirin, and then added the other stuff (or increased the amount, as with D3). If you have GI issues, Afrin recommends an H2 antihistamine like famotidine (I've take a half famotidine twice since late October, 2020, so I can't speak to it, as I rarely have GI issues now). I also have found (over the last week or so) that I seem to need a certain amount of humidity, at least at night, or else my throat tickles and a persistant dry cough can occur (though it seems to go away quickly if I do something like put a mask on). One thing that hasn't gotten much better is a runny nose. I think it's a little better these days but it's still there, usually at least a few times every day.

 

[Rufous McKinney]

I started with H1 antihistamines,

I'm curious: discussion of taking anti-histamines....

does this have a drying effect on the eyes and sinuses?

Or is it in fact somehow improving the dryness....(which is part of our Yin deficiency here)

 

[MCASMike]

I'm curious: discussion of taking anti-histamines....

does this have a drying effect on the eyes and sinuses?

Or is it in fact somehow improving the dryness....(which is part of our Yin deficiency here)

My eye condition had gotten really bad right before I did some research and came upon MCAS. I can't say that loratidine or aspirin helped a lot, but I do remember that after using the ketotifen eye drops, averaging perhaps a drop per each eye every two or three days, the need for the drops soon diminished substantially, and in the last month or so, I've only used a drop in the left eye on two occasions. I do still have a little bit of tearing, when I lie down to go to sleep or when I sit up in bed in the morning, but that is a very minor inconvenience compared to how it used to be. I have been sleeping with a silk scarf over my eyes at night for over a month now, which seems to help prevent the eyes getting dry during the night (it was winter until recently so the humidity was likely quite low in the bedroom).

 

[NotThisGuy]

My MCAS turned out be be hidden peridontal disease (hidden = no symptoms) once I got that under control the MCAS wasn't really noticeable.
I was at my worst at that point (90% house bound) as I had MCAS, POTS and CFS

can you tell us what kind of mcas symptoms you had and how severe it was? did you get anaphylaxis at all?

 

[PisForPerseverance]

Good point to bring up how health and planet destroying toxins get missed in the public discourse. My understanding... Mast cell disorders are systemic not just in the way a person responds to stimuli, but also in other ways. In the future were going to understand the common co occurance of mast cell disease with me/cfs, eds, ibs, endometriosis, ic, and dysautonomia. And I'm sure others I'm forgetting. The connective tissue relationship seems important. There is so much more we will find out. My propensity for mcas was at least partially inherited. Mast cell issues, eds, and endometriosis are in my family. I think it's more complicated or indirect than toxins being a direct cause of mcas disease. Because of how heightened mast activity is involved with a bunch of conditions. And how they're just part of the immune system so they're involved in so much. Including autoimmunity in at least some cases I would think... Are mast cells the only cells that put out prostaglandin? Because just think what all they're involved in with just that.

Where I think toxins tie in indirectly is that I think like a lot of things, genetic predispositions turn into full diseases in the right conditions. Both genetic predispositions and right conditions can be toxin related in terms of what's being thought to happen in the population. Because it's thought that epigenetic changes occuring in life can get passed down, and that toxins are one of the things that cause epigenetic changes, it could be a big reason that mcas is becoming common like all the other modern diseases that are growing. But, I think studying why people with mcas respond to toxins the way we tend to, would also be informative to the larger investigation of how toxins interact with the human body.

We've barely scratched the surface on investigating the interaction of toxins with us and the planet, let alone trying to remedy it unfortunately. So yeah it's not really part of the medical narrative much yet but it should be. With NDs and functional or integrative doctors, it is a focus though and that's good. Right direction. I wonder about the benefits of removing some toxins by default for us. And whether it might be enough to lower my cancer risk a good amount even in the midst of these systemic diseases.

Many doctors present mast cell activation syndrome as if it's a syndrome where someone mast cells are on high alert for noreason, or for an idiopathic and possibly genetic reason, and so they get triggered by totally harmless things and cause issues.
In my opinion. Nobody knows enough about mcas to tell anyone why their mast cells are reacting, and what they are reacting to. Not even the best doctors. While some "mast cell activation syndrome triggers" are harmless, some arent. And since we are exposed to thousands of harmful chemicals in this day and age our response should be to dig deeper and not assume that the mast cell activation is the main problem rather than a symptom of a deeper problem. Sure, your body reacts to some harmless stuff like pollen, but it's probably so inflamed and unregulated bc of something worse... and the pollen and relatively harmless foods are the collateral damage when its primed by something very nasty. So imo this requires a lot more study. One could also view mcas as one part of a broader innate immune system response to toxins when the adaptive immune system fails, possibly due to low immunoglobulins

 

[PisForPerseverance]

Just to let anyone know... Citrus and citrate are common mast cell triggers. It's a common food preservative and sometimes a filler in supplements and maybe meds. Usually advice is to not use citrus or citrate, but I guess some people may be able to be fine with it? To check... if anyone has been using it for a while, you can do a break for a little while and add it back. The formulas where there are things that help mast cells along with mast cell triggers... Maybe there's some neutralization there, but I'd recommend testing. Citrus derived vitamin c is a trigger for many as well. Sucks

Solgar Querticin has bromelain, rutin and others in it:

https://solgar.co.uk/products/solgar-quercetin-complex-with-ester-c-plus-vegetable-capsules

View attachment 42271

 

[frozenborderline]

In this podcast episode , we address mast cell activation syndrome. I have been diagnosed with mcas , and so has my sister. Shared genetics ? I don't think so, I think it's shared environment

Anyway
Listen to "Go West Young Man": An Interview with Jacob Jones by Headless Youth Podcast on #SoundCloud
https://soundcloud.app.goo.gl/QPd9z

 

[frozenborderline]

Also I have a transcript for the episode. Anyway we discuss why extreme solutions are needed and why mold remediation might not work, in context of mcas. Here is part of the transcript relating to that.

00:42:07] Walker: [00:42:07] I was just going to make a point about mycotoxins. Um, like one of the things that people don't get is, uh, they're just like get an air purifier or whatever, you know, um, get an air purifier or wear a mask or whatever, like scrub the spores, scrub the mold. But mycotoxins, not the mold spores necessarily themselves, which are bigger, mycotoxins there's small molecules that pass through like HEPA filters, uh, a HEPA air purifier is not maybe to shit about a mycotoxin. Um, so there are these small molecules that are hard to filter and also are, um, eh, they're like sticky in terms of molecularly... uh, I don't, I don't know exactly the molecular charge. Eric talks a lot about this, but they will stick to things. And I, in fact, I have-- Theo Theoharides, a very prominent Mast Cell Activation Syndrome doctor and so we're talking about a guy who, you know, eh has some mainstream credibility for mast cell activation is from, he's not some like alternative medicine doctor, but he says, you know, your mast cells react to mycotoxins and they react to mycotoxins that stick-- like he talks about how the mycotoxins stick to clothes and, porous items and things. So people not only have to leave their house sometimes to get better from these mast cell reactions to mega toxins, they have to like leave behind their stuff.





[00:43:48] Jacob: [00:43:48] Yeah. Uh, the they're tricky and it-- and it doesn't even come down to just remediation of mold. Um, and a lot of that's due to the sticky nature of those mycotoxins, which are, um, which essentially they, they will stick to everything. Um, which fairly --S-- you or myself, um, leads to kind of all the symptomology that we've both been talking about, but, um, how may have mold remediated, but everything that's unfortunately inside of that environment and that home, or wherever, after years of having mycotoxins kind of just coating the whole place and being absorbed and to walls and to computers, furniture, everything, essentially plastic items, uh, kitchen, where most of that stuff, um, that's hard to remediate.

 

[frozenborderline]

https://atomicchesterton.blogspot.com/2021/04/interview-transcript-jacob-jones.html?m=1

"we had talked a lot about just our sensitivities, but there are some formal diagnoses for environmental sensitivities. One of them is, um, mast cell activation syndrome.

[02:08:23] And this is not like, might be a little bit controversial, but it is recognized by mainstream medicine. And it's where your mast cells, which are the type of innate immune, cell white blood cell involved in allergy and immune response, um, are said to overreact to various environmental triggers. Um, I was diagnosed with this before I ever did mold avoidance based on the high levels of tryptase and histamine in my blood, but also just clinically diagnosed, like based on my symptoms.

[02:08:57] Um, and then recently my sister who has also has similar reactions to mold and outdoor toxins to me was diagnosed with it. Um, and so I just wanted to point that out is just like, um, yeah, I've had that formal diagnosis, but also I took a lot of the meds for it. And while that was somewhat helpful, it wasn't anywhere near enough until I did avoidance.

[02:09:24] Um, and uh, going to pristine areas was more help, more important to me than just staying in a bad area and taking meds to suppress my immune response. uhm...

[02:09:37] Jacob: [02:09:37] What are some of the symptoms of that?

[02:09:41] Walker: [02:09:41] Well, um, Hmm. Cause, uh, I can talk about my symptoms, but they're, they're so varied because it's just basically a syndrome that means that you have a type of almost allergy based, but it can be more neurological than a classic allergy response to like a number of, uh...

[02:10:05]Jacob: [02:10:05] it's a histamine--a histamine response, right?

[02:10:08] Walker: [02:10:08] So basically anything like, um, I would say, I mean, for me, I had skin flushing and rashes, hives, just like whenever I was inside the house. I also had a lot of food intolerances that are less so, um, in good air, my sister and I joke that like, well, it's not really a joke so much. It's just like a funny thing that we've noticed.

[02:10:34] It's just like, it's better to be eating like fast food, like In-n-Out, which is so one of the best parts of the Southwest in the desert than to be eating like whole foods in an awful house. Um, so yeah, if you wanna heal enough to have food intolerance go away and eat In-n-Out in red rock Canyon, that's something to maybe look forward to.

[02:10:59] Um, but yeah, uh, so hives and flushing, skin reactions are part of mast cell activation syndrome. Food intolerances, um, and all of what goes with that. Um, but also brain fog, um, and fatigue. So there's a lot of overlap between the ME/CFS and chronic fatigue syndrome symptoms and heart racing. And then some people have some he-- some people go all the way up to having full blown, idiopathic anaphylaxis, where they have anaphylaxis, even to things that on an allergy test they're not allergic to.

[02:11:36] So you don't even have any predictability over where you'll, what you'll have anaphylaxis too.

[02:11:43] Jacob: [02:11:43] Wow.

[02:11:43] Walker: [02:11:43] Um, yeah, like I think, um, Simka, talked about that, right? He he's someone, um, for the listeners in our mold avoidance communities, he's been talking about having, yeah, like idiopathic, just going into anaphylaxis a lot of the time to random triggers. Um, yeah.

[02:12:07] Jacob: [02:12:07] Yeah. That's interesting. I would also, I would imagine it causes a pretty strong inflammatory response, like staying in it, like if you kept doing that, is your body kind of in a constant state of inflammation from the histamines?

[02:12:25] Walker: [02:12:25] Yeah. It's histamine, but it's not just histamine, which is why it's not just the classic allergy response. It has like...

[02:12:31] Jacob: [02:12:31] ah, interesting.

[02:12:32] Walker: [02:12:32] You can almost have like flu-like, uh, feeling because you have. Um, you have, uh, cytokines, which are like, uh, things that make they're the things released by the innate immune system that are inflammatory that make you, they're the things that when you feel like shit, when you have the flu that's cytokines, um,

[02:12:56] Jacob: [02:12:56] and it's not autoimmune?

[02:12:57] Walker: [02:12:57] ...things. Yeah. Yeah. And it is essentially a type of auto-immune

[02:13:03] Jacob: [02:13:03] ...interesting...

[02:13:03] Walker: [02:13:03] um, illness. But, um, a lot of that went away when doing avoidance. Um, I still take mast cell stabilizers and meds, but, you know, they didn't do shit when I was in off-- like a really awful, they didn't do shit when I was in a really awful environment.

[02:13:23] You can't just expect to stay in an awful environment and necessarily be able to medicate it away, which, um, unfortunately is sometimes the mainstream."

 

[MCASMike]

Not everyone can afford to keep moving until a "good" location is found. Unless you are super wealthy, I think the best thing is to keep being observant and trying new things that make sense. For example, wearing a nose/mouth mask all day (other than while eating) and sleeping with a blanket over my head has led to significant relief of dry, tickly throat, dry cough, runny nose, post nasal drip, and eye irritation/tearing (I keep the mask open a bit on top so that breath exhaled goes up into the eyes). However, this does not seem to have helped other symptoms at all. It may take time to see results for other things, though, so it's a long process and you have to stay super observant. As to diet, I have had to try all kinds of different possibilities, and I wouldn't even think of eating in a restaurant, other than something like a little ice cream (though if it seemed to spongy, that likely means a lot of carrageenan, so I wouldn't eat much of it). I may have eaten something in a restaurant around 5 times in the last 15 or so years.

 

[frozenborderline]

Anyway, I am out of commission for a bit, just did invasive cervical traction with Dr bolognese and I always have a major crash and my cognition isn't great during these. So I cannot be as prolific with my writing or eloquent as usual and even my baseline wasn't good.

Anyway , with regard to all the debate about mcas etc :. My position has never been that mcas isn't ever a useful diagnostic construct , for getting recognition as having a valid illness, or that it's not at least real in the sense that it is part of the truth. There is mast cell activation, as a part of a broader innate immune response , but I don't think that is ALL there is , is my point. And I don't know how we know that the mast cells are acting pathologically and not , say, protectively, like as in a protective response like naviaux says dauer is. I think we need the answers to these questions.

 

[frozenborderline]

Not everyone can afford to keep moving until a "good" location is found. Unless you are super wealthy, I think the best thing is to keep being observant and trying new things that make sense

I agree with the first one, but I don't think the issue is that it is solely limited to wealthy people. Like any treatment (and yes , I do think of it as a valid medical treatment ), it can cost a lot of money, but this doesn't affect whether it's a true theory or the treatment is necessary.

Anyway, I am not really trying to push the practice on anyone . Just like I'm not trying to push the meds that have worked for me on anyone , or cci surgery (I haven't tried that yet, but it's next on my list). But I do have to say my experience or else it would be borderline negligent. Not that I'm in a position where I have a duty to help people, but I mean, morally negligent , not legally.
Anyway, my experience hasn't been as extreme as many, but I'm not rich and I did "extreme" mold avoidance for awhile , and it helped me so much I never really want to live without pristine air again.
I have tried so many drugs and supplements for me/cfs in general, but also for mcas. And the mcas ones were merely somewhat palliative , not as much good at restoring function as "avoidance " is. I put avoidance in scare quotes bc I really think it's not just about avoidance , it's not just about the things one is trying to be away from , the toxins or mcas triggers , it's also about the healing effects of certain microbiomes and "macrobiomes". There are studies on the effect of outdoor and indoor microbiomes on ones health. The Japanese have also studied the effect of what they call "forest bathing", and how it may be beneficial bc of terpenes from the trees , and other things , ions, the filtering effect a forest can have.

But I don't want to get evangelical, I just think it should be studied. I could care less about whether others do it at this point but it's a valid data point and it should be studied. That's how we could fix the problem of it being financially inaccessible. Bc it's not that hard, on a larger scale to make this accessible as a treatment, if we managed to identify the specific harmful and beneficial factors in the air.

Anyway, that's why I posted the podcast related to avoidance in this thread. It's actually me interviewing a college friend. What's so interesting is we knew each other from college , where both of us dropped out for different health issues. Me for me/cfs, him for depression. And then later on when I was bedridden with me/cfs he wasn't so understanding at first and seemed to think I was maybe psychosomatically ill, and needed to do psychedelics. then he started to become more sick to the extent he sought my advice a bit. Then he understood what I was going through. he didn't get full blown me/cfs or maybe he did on the mild level, I do know he got fatigue beyond depression level, severe gut issues, and then worsened depression and anxiety, but also trouble exercising. So maybe he was actually under the me/cfs umbrella , but he listened to me and our shared doctor I introduced him to, and did mold avoidance and I genuinely think he headed off getting as sick as me, bc he started it early enough for him to bounce back and not have permanent damage. I did really improve with mold avoidance , but it didn't cure my cci, even though that was caused by mold and inflammation.

So back to how accessible, or financially difficult it is.
It really is, and it sucks, but there's levels to that problem ,and nuance. The most successful people at it are middle class or upper middle class. I could've never done it without fundraising.
And I couldn't have done it without the help of my caregiver.
I never afforded an rv or trailer, those make it easier for people. I spent a lot of time on BLM land which is free to camp on.
Imo there are two axes on whether one can do this : level of health, and wealth. Like, you could maybe do this as a poor person with moderate cfs , or as a rich person with very severe cfs but if you are a poor person with very severe cfs , that's hard. Well, I had very severe ME , and cci , actually dependent on a collar and couldn't walk down stairs or anything, when I did this, and was poor but having the fundraising resources I did, and the support of a caregiver , were what made it possible. Additional resources. I'm not saying this for your benefit as I don't want to push that path on anyone who doesn't want it , but for anyone who's possibly reading this.

And that's why I do think it would be so great to study this bc the sooner people can intervene and do something like this , the cheaper it may be. My friend was able to drive himself (although when he started it was tough) and work (after being in the good place for awhile) , and camp off grid by himself. These make it easier. He didn't have much money but this is what I meant by doing it when one is relatively healthy, or at least not severe ME --since compared to normal people he was very unhealthy.

I do think that despite trying and getting some benefit from ldn, ketotifen, quercetin, rupatadine, loratadine, cyproheptadine, and cromolyn, that all of these paled in comparison to the profound health changes I got from " mold avoidance." I haven't written about my mold avoidance experience in full though in this forum, bc I had a relapse after getting covid , combined with time worsening my cci, and I've been preparing for cci surgery. I went from bedbound and experiencing episodes of not even being able to speak, to walking a quarter to half a mile without pots issues (could've gone further but was having a very cci specific neck pain issue , and tethered cord related --eg structural back pain and tightness issue, very different from the PEM I had at home) , and from my gut being frozen to very normal gut motility and an appetite , and from barely being able to read a paragraph or remember anything to reading dante's inferno and other serious books , while in great air. Re: having to move lots, I did move, and I didn't see much issue with it, but when I got covid and I had to settle down, I was actually able to find a very decent short term rental cottage with good outdoor air. If they hadn't stopped renting it out after six months or so I'd be there happily. For those of us who are quite reactive, finding buildings /indoor spaced we can tolerate is the hard part. Finding outdoor air takes some work but especially in certain parts of the country, is not that hard and doesn't always change even with the seasons , eg if I could afford to buy any land , I would've been fine with settling down. The only thing keeping me moving was a) a desire to explore , and to learn about how much air I could tolerate and heal in, and also to see more , since while I started to heal I actually became interested in the world and beautiful things in a way I wasn't before, and b) BLM rules about maximum stay limits etc. It wasn't that I stopped tolerating places and had to move on, that was extremely rare. Some places change , but I found places where I felt great 95 percent of the time and there may have been one or two days a year something blew in from somewhere and I didn't. This may be a slight exaggeration given how long I did Avoidance, but my point is it wasn't all some horrible lifestyle of running from everything constantly, a lot of it was sort of happily squatting on some nice campsite where I felt like I was healing , and it even sort of felt like "home" in that intangible sense that we mean when we invoke the idea of homing and an axis mundi.

 

[MCASMike]

I have hardly any strength. If I can do some basic things in the course of a day, I am content (like making a small pot of tea). If you are in the USA, I'm not sure there is any government agency you could ask for the kind of help one would need, if you were in my position. For me (and I suspect most with MCAS), the most practical thing to do is to wear a full face mask to test out the bad air hypothesis. However, the bad air hypothesis suggests this is sort of a light switch disease, and perhaps it is for you. For me, it seems I can get close to "normal" if I don't do much physically and keep the humidity at a certain level (I may buy a humidifier to test my expeiences further, though there should be plenty of humid weather coming soon, so my plan is to wait and see how that affects me before spending money). Honestly, I do not want to live like Erik Johnson (read his book, "Extreme Mold Avoidance," if you don't know about his experiences), not that I possess the physical ability to do so even if I wanted to (these physical problems are not related to MCAS, other than the breathlessness upon mild exertion).

 

[frozenborderline]

For me (and I suspect most with MCAS), the most practical thing to do is to wear a full face mask to test out the bad air hypothesis.

I did this, as well as air purifiers , without helping me at all, though, and it didn't do shit. And I had as fine a mask filter as possible, a 3m p100 with voc cartridges. Again, I'm not suggesting you do what I did , but I feel its important to put these details forward. Environment ended up being very important to me, but moving from my house to just another house wasn't enough , at least in the same area, and using a mask like that didn't help, so if there was someone e with the same sensitivity as me, and they did those things , it may not rule it out. I do thunk masks and air purifiers are still useful to have for stuff like smoke or dust or other thins but they don't seem to help with the specific thins I react to which I suspect are small molecules.

As for whether any govt assistance e would help I have ssi , which is obviously ungenerous and needed to be supplemented by fundraising. Ssdi is better in amount of money it tops out at , if you can get it, its not available for youth who haven't had a work history, this disability payment system is ageist unfortunately
I've heard that housing vouchers can be used on many types of housing, that's what the AMMES people told me when I asked them for a grant for housing, instead of helping g me. But sincw they don't know the level of my sensitivity, I'm not sure their assurance that one can easily find mold free housing that acceptsa housing voucher means all that much

As for living like Erik Johnson. ,I'm not suggesting g you do. There are more purposes in my sharing my experience than to suggest anyone live like I do. I really care less and less the more years I go on living, if anyone accepts what I say. I used to be very disbelieving of these ideas myself until I experienced this and was almost physically reborn or rising from the dead, albeit in a slower time scale than Lazarus. but as I'm sure you'll agreed as someone with mcas, it would be ideal if people with these issues had a choice in where they lived. It should not be so costly just to have air that doesnt make us react or make us sick, whatever that means to an individual. That's why I share my experiences, not to convince e you or anyone to do mold avoidance, but rather to convince people in general that it's worth studying, or worth helping the cause of people who are environmentally ill. Maybe someone will found a charity that helps us.

Regardless , I actually don't mind social aspects of living a bit more remote and I think that would just mean a bit more travel once in awhile for my doctors visits and that's fine... I already lived in a very rural area before , it was making me sick tho. So either way I still didn't live near great doctors etc ... Anyway , I'm fine with living remote but there are also some city areas or large towns that are sort of exceptions to the rule where I've felt pretty decent. Parts of the Vegas outskirts and Albuquerque are like this although probably Vegas too expensive anyway .

 

[frozenborderline]

However, the bad air hypothesis suggests this is sort of a light switch disease, and perhaps it is for you

I think I know what u mean by this but it would take longer to answer , then a short answer I can type. I don't think its a simple on off switch but I do notice some effects quickly in good air , certainly within thirty minutes or an hour . often quicker but that's a conservative estimate.