Mast cell activation syndrome is not what it seems

frozenborderline

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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).
Got it. Like I said, not trying to convince you to do anything. My physical problems were so related to environmental illness that it made caregiving a bit easier but when starting from bow sick I was u can improve a lot and still need care, so I still needed care despite getting better. I mean I'd probably have to improve like 800 percent or more before I didn't need care giving lol from my lowest baseline
 

MCASMike

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Well I would certainly welcome feedback from anyone who has MCAS and travels the world to tell us if there is symptom relief. Though I can't do that, I could do things like check the humidity levels, etc., and then try to recreate that where I live, to see if I can get symptom relief that way.
 
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Here is the latest consensus by experts on what MCAS is and why it's important to treat it.

https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/html

Though some of us have low Immunoglobulins, most do not. For many, it does seem to be related to a disrupted microbiome, commonly from antibiotic use and/or oxalates and/or mycotoxins.


Be persistent. You should not be billed for tests that aren't run or arent run properly. In the US, I've had Quest Diagnostics run MCAS labs, with some prodding - done of the tests are "sendouts."

There are many treatments, see attached.


There are many. See attached.

Quercetin and Neuroprotek are available without prescription, along with H1 and H2 antihistamines. Cromolyn sodium is also useful, but needs a prescription. And Gleevec/imatinib.

What are the tests you had in mind? Feel free to link a hyperlink with such information
 
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The worst thing for my MCAS is going after cellular Lyme and co in the brain. Cellular immunity in the brain hits my basal ganglia very hard; it takes me from a mild case to fairly severe in a couple weeks, this then lasts for about two months. It's the one thing that really ramps up my sensitivities. As such I believe it's limbic dysfunction that often leads to MCAS, but I guess one could regard this as dysautonomia.

I dont understand the connection between MCAS and lyme, but please let me know if my lyme article helps you out: https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/
 
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I know a person who had a severe EBV infection in which another person who ate the same tainted food he ate died, he had CFS but got better slowly. The first month he took gumweed leaf, desert parsley, and osha root and then rested as much as he could for 2 years until he was nearly better.
 
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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

Could you give more information on the periodontal disease, what was it, what was the treatment/cure?
 

frozenborderline

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Though I can't do that, I could do things like check the humidity levels, etc., and then try to recreate that where I live, to see if I can get symptom relief that way.
Right. I feel like if it was as easy as a single measurable variable tho wed have an easy fix for this illness. I'm still waiting for someone to do air samples in homes of me/cfs patients who are most symptomatic and out them under w microscope.

But Idk, maybe you could replicate some of this via an ionizer and a thriving permaculture Garden. I actually talked about the ideas behind what we actually react to and what is healing in the episode I posted above, but if you can't listen , there's also a transcript. Like I said we don't have a scientific study identifying whst

we react to. But we have some ideas. A common theme in where people heal seems to be places with intense biodiversity and lack of lots of tech industry or agriculture pollutants. And my guest thinks we can remediate areas by using plants and mushrooms that help filter the air and soil and provide a diverse microbiome that keeps nastier toxic molds etc in check. I'm not sure I'm as optimistic as him but maybe something like that could work. Personally If I was trying stuff just for indoors I would start with something as simple as an ionizer and then additionally a fan for the window for airflow. Ionizers seem valuable. Some people told me that's why the sea air has beneficial effects t, bc of negative ions , sodium and chloride ions.
 

MCASMike

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Buying an ionizer sounds like something worth doing, since they don't require much maintenance and are inexpensive. I'll do some research on it. Thanks.
 

frozenborderline

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Ionizer I'm highly reactive too. :( Also which can't pull up now, read other reasons to avoid them.
it does seem like everyone has different reactions. ive been told that bc of mcas i need to stay away from morphine or various opioid pain meds, but i dont really react to them, or that i must eat a low histamine diet. whereas some people with mcas seem to not benefit from mold avoidance, whereas thats almost all that helps my mcas (and me/cfs). so i dont think we should make generalizations unless there is really strong evidence for them. maybe an ionizer wouldnt help you but might help mcasmike. i dont have personal experience with them, but they're supposed to replicate to an extent the feeling of sea air and how the ions there cleanse the air.
 

lenora

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Quercitin definitely works on my hay fever symptoms, for a very long time I couldn't tolerate it, over stimulation and/or stomach problems. But now all of a sudden I can, which is great really as it's helping a lot. I mainly take it to counter act the effects of pollen though.

Good Morning.....How much quercetin do you take and how many times/day? We're probably dealing with different allergies, and I used to take quercetin, but don't any longer. I'm a at a time of life when allergies are supposed to improve. Instead I'm heading in the other direction...and it's tiresome.

Thanks in advance for your info. Yours, Lenora.
 

Strawberry

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maybe an ionizer wouldnt help you but might help mcasmike. i dont have personal experience with them, but they're supposed to replicate to an extent the feeling of sea air and how the ions there cleanse the air.

Thats an interesting perspective. I’ve avoided them due to the MCAS issue, but considering how much I improve in Honolulu it might be worth trying. I’ve moved two blocks from salt water and it doesn’t work. But maybe there isn’t ionization here?
 

MCASMike

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126
From my research over the last couple of days, the key thing (for me) is to avoid an ozone maker. In some cases the unit contains both an ionizer and an ozone maker. I read quite a few Amazon reviews and that seems to be a good place to get feedback. One unit apparently has overheating issues, for example.
 

MCASMike

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126
Just because you stop eating high oxalate foods doesn't mean an oxalate problem goes away. One must bind the minerals going in with citrate, ensure B6 levels are sufficient, have adequate D3 and K2, and be on a low oxalate diet to for a lengthy period of time, possibly 2 to 10 years, or forever if one has the genes for primary oxaluria.

Well then I guess that approach will be for someone else to explore (unless I'm doing the "right thing" now). I'll continue to report what I do and what I observe in this context, though, for those interested.
 

frozenborderline

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Thats an interesting perspective. I’ve avoided them due to the MCAS issue, but considering how much I improve in Honolulu it might be worth trying. I’ve moved two blocks from salt water and it doesn’t work. But maybe there isn’t ionization here?
I've heard that hawaii can be surprisingly tough for some reason. I've always wanted to go there , and Jen felt good there. But there are lots of moldies fleeing there and doing better parts of the mainland. But re the sea air thing, it depends on air direction and I think effect is maximized when u are really close to the ocean. In coastal areas with otherwise bad air I can get relief from getting brought very close to the sea, like thirty feet or so
 

frozenborderline

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4,405
From my research over the last couple of days, the key thing (for me) is to avoid an ozone maker. In some cases the unit contains both an ionizer and an ozone maker. I read quite a few Amazon reviews and that seems to be a good place to get feedback. One unit apparently has overheating issues, for example.
I think ionizers may make a small amount of ozone. But it's a different purpose than big amounts of ozone and I don't think they necessarily all do that. Ionization can cause dust to fall out of the air I believe , it can clean the air via electric charge in a way more helpful than a simple air purifier. This is speaking from what I've heard. I never tried one in a house. I'm curious about if there's a single air purifier, like some of the high end ones, that actually get out mold toxins, for my own sake. It's eZier to find good outdoor air than a good building so a good airflow and air purification setup seems in order, but the expensive ones , some lookimpressive and some like scams. Lots of debate from consumer reports and people at the company on how well molekules work
 

Strawberry

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Seattle, WA USA
One point I feel I need to make about Hawaii, the moment I get near the airport my legs turn to jello. But yeah 24 hours on the island and I start improving. One week and I can walk a mile. But Hawaii does have a lot of bad areas. I just want to recreate my improvements there, HERE.

Good point about ionizers making ozone. That must be why I decided never to use one.
 

frozenborderline

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One point I feel I need to make about Hawaii, the moment I get near the airport my legs turn to jello. But yeah 24 hours on the island and I start improving. One week and I can walk a mile. But Hawaii does have a lot of bad areas. I just want to recreate my improvements there, HERE.

Good point about ionizers making ozone. That must be why I decided never to use one.
Ionizers don't make much ozone , and I don't believe they necessarily have to make ozone they're not ozone makers, which make toxic full amounts of ozone to clean places while one isn't in them.
 

YippeeKi YOW !!

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Second star to the right ...
From what I've read, MCAS appears to be a type of dysautonomia.

Generally speaking, mast cells can be degranulated by either biological threats OR by the autonomic nervous system. The autonomic nervous system can also increase the sensitivity of mast cells, without degranulation.
@Pyrrhus , you're rapidly becoming the new @PatJ in these threads due to the depth, breadth, width, and practical application of your posted information and links.

We are beyond lucky to have you here, and thank you for everything that you post, and the time and effort you put into that :woot::woot: :thumbsup::thumbsup::thumbsup: :hug::hug:
!!!
 
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