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    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.

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What if you have an infection?

Messages
22
I've noticed that infections are commonly listed as being able to trigger/cause masto. And likewise, the drugs used to treat them as well (antibiotics, etc.).

So what if you have both masto and a known infection? Treating the infection could flare the masto (from herx's) or else the drugs used to treat the infection could flare/worsen the masto. So then what?


Has anyone gotten rid of masto by treating an underlying infection?
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Not directly answering your question, but I mostly only have CFS symptoms anymore when I get a virus cold to stir things up (also as in sig)

Also, it would be a mistake to conclude that all mast cell--> CFS comes from outright mastocytosis or MCAS.
 

camas

Senior Member
Messages
702
Location
Oregon
I've noticed that infections are commonly listed as being able to trigger/cause masto. And likewise, the drugs used to treat them as well (antibiotics, etc.).

So what if you have both masto and a known infection? Treating the infection could flare the masto (from herx's) or else the drugs used to treat the infection could flare/worsen the masto. So then what?

Has anyone gotten rid of masto by treating an underlying infection?

From what I've been reading on masto boards, most just seem to suffer through the treatment until the infection is cleared, and then attempt to get their mast cells calmed down afterwards.

Mastocytosis is caused by known or suspected gene mutations that lead to abnormally high numbers of mast cells that cluster in the skin, liver, GI tract, etc.

In MCAS there is not this over accumulation of mast cells, but for some reason the mast cells are triggered more easily and degranulate quickly when activated.

Mast cells are really complex, so there is a lot of research that needs to be done to better understand both Mastocytosis or MCAS.

I haven't read of anyone recovering from masto by treating an underlying infection, but you'd think a chronic infection whether bacterial, viral, or fungal sure wouldn't help matters.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi wowzer,

I've taken a few courses of antibiotics and parasite treatments in the last year but these didn't stop my allergic reactions.
I only took these for the limitted time that my dr prescribed these for tho. I've never discussed long term
antibiotic use and after my reaction to these, I'm not sure I want to try it. I live alone and these meds
made me extremely weak.

If I had a carer I would ask my doc about trying a long term treatment tho. When I got parasites and h pylori
in 2011, I was barely able to stand up. After treating and using probiotics etc to restore my gut
I went back to my "normal" cfs fatigue / oi. So I see a possible connection for me.

I'm not sure how our other allergy / immune functions like those found in our skin, nasal passages, etc fit into
all this. Many of us have contact allergens as well as food. Mast cells are found throughout our bodies
so solving an infection may help but not stop the mechanism keeping our mast cells in high gear.

Tc ... X