• 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 (FM), 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.

Systemic Mastosytosis/Mast Cell Activation Disorders

Aidan Walsh

Senior Member
Messages
371
Systemic Mastosytosis/Mast Cell Activation Disorders found in cfs/fibro from Tufts University...% have rare form of Leukemia called Mast Cell Leukemia and children usually come down with the Cutaneous form...Doubt it now that any infections play any roles plus mastosytosis has multiple causes but leans toward genetic not virus, bacteria, lyme pure b.s.
 

osisposis

Senior Member
Messages
389
Systemic Mastosytosis/Mast Cell Activation Disorders found in cfs/fibro from Tufts University...% have rare form of Leukemia called Mast Cell Leukemia and children usually come down with the Cutaneous form...Doubt it now that any infections play any roles plus mastosytosis has multiple causes but leans toward genetic not virus, bacteria, lyme pure b.s.

I think your wrong with your thinking there, mast cells are activated by mutiple stemuli includeing Lyme, bacteria's, toxins/chemicals, allergens and mutiple non-allergic stemuli, and infection does still play a role here, in water damaged building/home exposures it goes like this, the worse the WDB, exspecially high moisture/humidity wdb's, the worse the mast cell activation (other cells involved too), and theres a tipping point, even mast cells can only deal with so much and they well suppress the immune system to try to play catch up, not good ( and I always thought this was basicly where something goes wrong with how are mast cells behave, thus, very possabily the culprit in autoinflammatory,autoimmune disease, this tipping point basicly involves the switching to the th2 arm, and a allergic profile ( the allergy found in new ME/CFS patients that points to more severely damaged subjects). this tipping point is where things can go systemic, infection can accure, BBB can break down and for many in this case there is also a breakdown in the sinus/brain pathways, these exposures are chronic to acute exposures, it's on the more acute side that can push your body to the point of loss of tolerance and it's not just mutiple organs involved it's basicly the whole body, organs, systems and pathways. this has very little to do with genetics, and alot to do with maintaining homeostates. please excuse spelling errors.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi, even if one has genes for something (this works for almost all diseases), other things eg environmental factors etc often play a part in the development of it as well eg my uncle who has serious systemic mastocytosis (there are less then 10 people in Australia with it like he has, he's had bone marrow transplants etc for the masto).. didnt get masto till he was in his late 40s eartly 50s.

I have have a double mutation of at least one gene found in mastocytosis. Yet I didnt have any health issues at all (was extremely healthy) until I 26 or 27 years old and got ME/CFS. (I do thou nowdays get some masto symptoms).

I have 26 pages of double mutations of genes I have yet nearly all those ones havent affected me, it just makes me more susceptable to getting the diseases they cause.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Mast cell activation is strongly linked to adrenal health. Stressed adrenals will/can lead to mast cell issues. When my adrenals recently detoxxed, mast cell inflammation was one of the symptoms that disappeared.
 

osisposis

Senior Member
Messages
389
Hi, even if one has genes for something (this works for almost all diseases), other things eg environmental factors etc often play a part in the development of it as well eg my uncle who has serious systemic mastocytosis (there are less then 10 people in Australia with it like he has, he's had bone marrow transplants etc for the masto).. didnt get masto till he was in his late 40s eartly 50s.

I have have a double mutation of at least one gene found in mastocytosis. Yet I didnt have any health issues at all (was extremely healthy) until I 26 or 27 years old and got ME/CFS. (I do thou nowdays get some masto symptoms).

I have 26 pages of double mutations of genes I have yet nearly all those ones havent affected me, it just makes me more susceptable to getting the diseases they cause.
yes, I think it's getting fairly well known that you can have the bad genetics but never get the disease without a environmental exposure, studies with identical twins has helped show this.