• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Mast Cells in Lung Homeostasis: Beyond Type I Hypersensitivity

Undisclosed

Senior Member
Messages
10,157
this site doesn't appear to accomadate the way I do things so maybe it's not the place for me
If you need help with posting, please contact me via Conversation and I can help you out -- for example, putting links all in one thread instead of separate threads. No member should be telling you what and how to post and really it's quite off-topic to do so.

I will fix some of your posts that have lengthy paragraphs by breaking them up for you.
 
Last edited:

osisposis

Senior Member
Messages
389
Even while in the sbs group my research on mast cells was largely ignored even by "experts" in the water damaged building, mold exposure, maybe because of influence of Eric the mold warrior and the thought that mycotoxins were the main culprits even though some said or knew you have to look at the whole picture , at everything involved in that water damaged building.

Many don't get to this point where present to this severity, nothing like having this severity to see those less severely injured but people believe what they want.

Mast cells are the bridge between the innate and acquired immune system, both are involved and the water damaged building dictates what will be involved. Many experts only saw the innate immune system , many doctors look at the end result of a illness and try to make sence in a backwards fasion.

I lived this and I research it according to what I knew happened to me. mast cells are major players yet were ignored because they were mostly tied to atopic/allergy and forever it's has been assumed that that's the way that progresses, not to many are looking at how you become hypersensitive to both allergic and non-allergic stimuli when you are exposed to large amounts of both and it leads to immune breakdown, autoimmunity that causes the severe hypersensitivities aka allergic disease, MCS, whatever you want to call it.

There is actually research that points to chemical exposures causeing allergic disease and theres something called B cell isotype switching to IgE. many people in the sbs group did not show IgE to molds, some may of just not been tested for severe allergies to many molds and mold mixes after their exposures because they fell into this belief that it was all about the mycotoxins and so not even getting the mast cell involvement. some have never had specific immunoglobulin testing, I did.

Heres a clue too, people with prior allergy to mold probably would have reactions apon first looking at a moldy house that no matter how well it was covered up I'd think they would have enough allergic reactions that they would know when a place is going to bother them, this is not the same thing, all diseases acquired by a water damage building exposure is acquired by whats in the building, the sensitivies are to what you were exposed to and your reactions are to things that have these in them or chemical family members that are close enough the immune system sees them that way and maybe or possably after the fact you may continue to get sensitized to more things.
 
Last edited by a moderator:

osisposis

Senior Member
Messages
389
changing password didn't help, this didn't accure before here when I posted stuff just with this lastest stuff I have tried posting. also it would be great if there was a environmental exposure , subject heading cause I would have put it all there instead if trying to figure out where things should be posted under what heading


I also want to say this, don't give up , force yourself to try and try again, forcing myself to research and getting anything soaked into my brain was done by repetition, over and over and over, the things I haven't took time to relearn sence my TBI are still just as bad, I put my research ahead of everything and it was something I found actually was helping me, helping pass hours,days,years of avoidance to my triggers, helped me in reconizing my triggers like storm fonts for example and all the inhalable crap that's in them, I have a lot I could share but because I have great difficulties doing so I go unheard by the most part. I'm trying to get this info. somewhere that maybe Jarred Younger, Montoya, and others will see it. that is a main goal, but theres a lot involved here that you have to have a understanding about and sadly even experts in indoor air sometimes don't even consider how different these water damaged buildings can be and what all can be involved. I've had to research every angle of all this and compare to my own experience, omg, I almost gave up when it came to the immune system and all the answers weren't even available, still aren't but close enough , that was the hardest part, immunology and I'm not great but what I have become pretty great at is figuring out what ketwords to use to find what I'm looking for. theres times I have took breaks from researching and things start getting foggy, becomes even hard to try to just up and explain something to somebody on a whim, I always have to get my brain rapped back around stuff and memory recall is slow at best unless its already there in the for front weither just soaked in or dug up from long term memory with usually takes days of afterthought on any subject, lols, sad but true. so anyways, I'm sorry but I cant really have the time or patients to try to get the victims/patients educated as much as I'd love to be able to do that. I tried in the sbs group as best I could, I noticed that those more severely damaged would have more in common with me and come closer to getting it than others.
 

Gingergrrl

Senior Member
Messages
16,171
this site doesn't appear to accomadate the way I do things so maybe it's not the place for me

I hope you will change your mind and stick around. I strongly believe there is a link between water damaged buildings, mold, and developing MCAS as this is what happened to me. I appreciate all of your links and the only issue that I had was that there were 20-30 of them in different threads and it was hard to go back and find them all. I actually would love to find them all again and combine them into one thread so I can check out the articles later.

No member should be telling you what and how to post and really it's quite off-topic to do so.

I agree.

If you need help with posting, please contact me via Conversation and I can help you out -- for example, putting links all in one thread instead of separate threads.

I think this is a great idea (and hope it is okay for me to say this!) and I've asked the moderators for help many times when I could not figure out how to do something.
 

Hip

Senior Member
Messages
17,858
I desided long ago that it's good to be seen as is, and most people, if they want to can ask questions if they really cant figure out what your writeing, I'm just being real and my handicaps are real and I have managed what was very hard to do and that's research , I'm not perfect and don't pretend to be, the brain damage is real and I believe it is good to let people see that like it is, it doesn't mean I'm stupied, I never was.

I understand where you are coming from now. You are clearly pretty smart to understand these complex studies on MCAS, etc. So I was a bit perplexed as to why you were not writing more about them; but now I know your story and medical history, I completely understand why.

I hope you will stay on these forums, because I would like to share some ideas with you about brain repair.

I can really relate to your struggles, as I had significant brain damage from meningitis, though perhaps not quite as severe as yours. I lost the ability to recognize faces in the months that followed my meningitis, which was quite worrying. And I could not read even simple short paragraphs of text for many years. Ever since my meningitis in 2005, I have not read a single new book, due to the ADHD (and I used to be a voracious reader). The brain fog of ME/CFS also makes reading more difficult.

I have a folder on my computer about various drug and supplement treatments that may help repair brain damage. I'd like to talk about these with you, if you are interested. I research things like stroke damage, and the treatments used to try to heal this, in the hope that these treatments might also help help meningitis.



Have you tried any nootropic supplements ("smart drugs") for your cognitive difficulties? I found that piracetam 1000 mg daily works pretty well to improve memory, learning and concentration. You can buy piracetam here, here and here.

(Unfortunately, if like me you live in the UK, supplements like piracetam are now harder to get hold of, due to the silly UK Psychoactive Substances Act, which bans all supplements or drugs that affect the mind.)



Did you experiment with any antihistamines and mast cell stabilizers to treat MCAS, and reduce mast cell activation? The sort of drugs used in MCAS are these:

H1 antihistamines — hydroxyzine, cetirizine

H2 antihistamines — ranitidine, famotidine

Mast cell stabilizers — NasalCrom, GastroCrom, ketotifen



when I post stuff it's on a note pad and I usually can cut and paste in that order and it goes in that order but for some reason now when I try to post here by cutting and pasteing it basicly gets backwards and all together and I have to try to cut and paste every line seperatly under the other and its very time consuming.

It might be easier for you if you write your post directly in the PR forum post box. The post post automatically saves what you write, so even if you leave it and come back the next day to continue writing, it will save what you have written so far.
 
Last edited:

osisposis

Senior Member
Messages
389
I hope you will change your mind and stick around. I strongly believe there is a link between water damaged buildings, mold, and developing MCAS as this is what happened to me. I appreciate all of your links and the only issue that I had was that there were 20-30 of them in different threads and it was hard to go back and find them all. I actually would love to find them all again and combine them into one thread so I can check out the articles later.



I agree.



I think this is a great idea (and hope it is okay for me to say this!) and I've asked the moderators for help many times when I could not figure out how to do something.


it would be great if there was a subject heading on environmental exposures, and somewhere I could keep all this together , I really did know how I could present all this and where to put it all together, this work here is also very valuable to understanding how even living in high pollution areas can harm, really a lot we should be thinking about when it comes to our surrounding and how it can affect us . the other file is to big to upload but can be found.called: pathology of nose,lungs,heart and brain, worth finding and reading.
 

Attachments

  • Calderon-Garciduenas_Air Pollution and childrfen's brians.pdf
    879.1 KB · Views: 4

osisposis

Senior Member
Messages
389
sorry, the paper I couldn't upload is this one, even brings up mold, good read.



Mexico City normal weight children exposed to high concentrations of ambient PM2.5 show high blood leptin and endothelin-1, vitamin D deficiency, and food reward hormone dysregulation versus low pollution controls. Relevance for obesity and Alzheimer disease

Article in Environmental Research 140:579-592 · May 2015
DOI: 10.1016/j.envres.2015.05.012 · Source: PubMed
Lilian Calderón-Garcidueñas,
Maricela Franco-Lira
Amedeo D'Angiulli
George Perry, University of Texas at San Antonio
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I cant stand dealing with word spell checker because it just takes more time, I desided long ago that it's good to be seen as is, and most people, if they want to can ask questions if they really cant figure out what your writeing, I'm just being real and my handicaps are real and I have managed what was very hard to do and that's research , I'm not perfect and don't pretend to be, the brain damage is real and I believe it is good to let people see that like it is, it doesn't mean I'm stupied, I never was.

I dont deal with spell checker either. I once used to know how to use it but as I constantly forget things I no longer dont and I end up having to relearn something over and over which just uses up my valuable energy.

Im quite interested in any links you post on this subject though not currently up to reading these but may do so at some point.

My uncle has systemic mastocytosis, His daughter is disabled with same symptoms as me but her and her father think she has masto too, they think I do to. My diagnoses thou has been ME/CFS as I test negative on the masto blood test (but so did my uncle for many years and his sick daughter also tests negative).

I get far more asthma with the ME and when I crash.. so something affects my lungs. I also aspergers. I do think there may be some link between all these illnesses.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Even while in the sbs group

what does sbs stand for?

There is actually research that points to chemical exposures causeing allergic disease and theres something called B cell isotype switching to IgE. many people in the sbs group did not show IgE to molds, some may of just not been tested for severe allergies to many molds and mold mixes after their exposures because they fell into this belief that it was all about the mycotoxins and so not even getting the mast cell involvement. some have never had specific immunoglobulin testing, I did.

I have selective IgE deficiency come up in blood test results.. no IgE. Do you know if that would make allergy testing inaccurate in my case? (I dont understand it all). (I have MCS fairly badly).
 

osisposis

Senior Member
Messages
389
what does sbs stand for?



I have selective IgE deficiency come up in blood test results.. no IgE. Do you know if that would make allergy testing inaccurate in my case? (I dont understand it all). (I have MCS fairly badly).


SBS Sick Building Syndrome, I would think any immunoglobulin deficiency would not be good but I cant answer your question on that , sorry
 

osisposis

Senior Member
Messages
389
sorry, the paper I couldn't upload is this one, even brings up mold, good read.



Mexico City normal weight children exposed to high concentrations of ambient PM2.5 show high blood leptin and endothelin-1, vitamin D deficiency, and food reward hormone dysregulation versus low pollution controls. Relevance for obesity and Alzheimer disease

Article in Environmental Research 140:579-592 · May 2015
DOI: 10.1016/j.envres.2015.05.012 · Source: PubMed
Lilian Calderón-Garcidueñas,
Maricela Franco-Lira
Amedeo D'Angiulli
George Perry, University of Texas at San Antonio


these people have several good articles out there, worth finding and reading, try mexico city, PM2.5 in search and it may bring up several of them.
 

osisposis

Senior Member
Messages
389
If you need help with posting, please contact me via Conversation and I can help you out -- for example, putting links all in one thread instead of separate threads. No member should be telling you what and how to post and really it's quite off-topic to do so.

I will fix some of your posts that have lengthy paragraphs by breaking them up for you.


thanks, I will try to get something put together and let you know
 

Hip

Senior Member
Messages
17,858
@osisposis

Have you looked at very high dose fish oil for healing traumatic brain injury? Here is one article on this subject:

Managing Brain Trauma With the Benefits of Fish Oil

And here is a study:

Therapeutic use of omega-3 fatty acids in severe head trauma

A study in Norway found that there were no adverse effects from DHA and EPA at doses as high as 6.9 grams per day. Ref: here.

I actually tried megadose cod liver oil for ten days, taking 4.6 grams of EPA + DHA daily, and up to 6.9 grams for a few days. I used Seven Seas Extra High Strength Cod Liver Oil for this experiment. The 4.6 gram dose corresponds to 20 ml of this Seven Seas Cod Liver Oil.

I noticed very little effects from these high doses of cod liver oil, neither good nor bad.



An interesting approach to brain injury from stroke is hyperbaric oxygen therapy (HBOT):

Oxygen chamber can boost brain repair years after stroke or trauma

This is also interesting:

Chemical reaction keeps stroke-damaged brain from repairing itself

Here they found that nitric oxide not only damages neurons, it also blocks the brain’s ability to self-repair.
 

osisposis

Senior Member
Messages
389
@osisposis

Have you looked at very high dose fish oil for healing traumatic brain injury? Here is one article on this subject:

Managing Brain Trauma With the Benefits of Fish Oil

And here is a study:

Therapeutic use of omega-3 fatty acids in severe head trauma

A study in Norway found that there were no adverse effects from DHA and EPA at doses as high as 6.9 grams per day. Ref: here.

I actually tried megadose cod liver oil for ten days, taking 4.6 grams of EPA + DHA daily, and up to 6.9 grams for a few days. I used Seven Seas Extra High Strength Cod Liver Oil for this experiment. The 4.6 gram dose corresponds to 20 ml of this Seven Seas Cod Liver Oil.

I noticed very little effects from these high doses of cod liver oil, neither good nor bad.



An interesting approach to brain injury from stroke is hyperbaric oxygen therapy (HBOT):

Oxygen chamber can boost brain repair years after stroke or trauma

This is also interesting:

Chemical reaction keeps stroke-damaged brain from repairing itself

Here they found that nitric oxide not only damages neurons, it also blocks the brain’s ability to self-repair.


yes, fish oil didn't do much for me either
 

osisposis

Senior Member
Messages
389
Did you try at megadose levels? It is apparently at these megadose levels that fish oil can help for brain repair.

NO, I'm A LITTLE LEARY about cosuming high amounts of anything , I watch people trying all kinds of things and worried about weither they were actually harming themselves more by doing so
 

osisposis

Senior Member
Messages
389


I'm a pretty firm believer that lots of things can go from be good to being harmful if overly consumed in a chronic way, and have problem trusting that some things are as pure as manufactors would like us to believe. would like to try the HBOT, BUT HAVEN'T YET
 

Hip

Senior Member
Messages
17,858
NO, I'm A LITTLE LEARY about cosuming high amounts of anything , I watch people trying all kinds of things and worried about weither they were actually harming themselves more by doing so

Yes, I know exactly what you mean.

What I did was increase my dose of cod liver oil gradually day by day, carefully watching out for any negative symptoms or adverse effects.

I normally take around 5 ml of the Seven Seas Extra High Strength Cod Liver Oil each day (which contains 230 mg of EPA+DHA per 1 ml). I buy this Seven Seas product in a bottle as oil, because it is much cheaper than capsules.

So then I slowly increased my cod liver oil intake each day, until I got to a dose of 20 ml per day. Then I stayed at that 20 ml level for a while, and then increase to 30 ml per day for a short while.

I did not notice any adverse effects; but unfortunately I did not see any benefits either.