#(blame mast cell dysfunction)

[tj-crochets]

The options with the * are the ones I've already scanned, and all but the blorbo are sewing patterns (I've already shared the blorbo sewing pattern)

[thebibliosphere]

did you get hpv vaccines? theres /some/ evidence that it can be the trigger for pots in some (obv very few) people, i think it might have been for me so i have mixed feelings about it

I did not, but I want to get it done and will be doing so once I get my other more pressing vaccines out of the way because the benefit of preventing cervical cancer are worth it to me as someone with a family history of that cancer.

I’m going to say something that will likely get a lot of people’s backs up: but I do believe people when they say vaccines cause them to develop health issues like dysautonomia or MCAS.

How can I not when every time I get a vaccine it has to be done under strict observation with an epi pen at the ready?

But:

I also believe, based on my own research, talking to countless people with similar issues online and discussions with my own specialists, that those individuals were pre-disposed to such issues and if it hadn’t been the vaccine that got them, then it would have been something else that eventually caused the symptoms to develop.

There is an under-explored genetic factor to mast cell dysfunction and mast cells can play a role in autonomic failure conditions, like POTS, regardless of whether the person suffers the classic allergic reactions more commonly associated with mast cell dysfunction.

Sometimes, something triggers the immune system the wrong way and that’s the catalyst.

It could be a vaccine, or an otc medication safe enough to give to infants. Sometimes it’s a virus or a bacterial infection. Sometimes you’ll just be chugging along and your genetics decide to hit you with a steel chair. It’s unfortunately just your luck of the draw.

And I understand people get validly frustrated and angry when vaccines do this to them, because they’re doing the right thing to protect themselves. It’s just deeply unfortunate that they had this type of immune response that is poorly understood and unpredictable. My hope is that as mast cell research grows, solutions will be found to help prevent it or at least mediate it.

Personally, in the meantime, I’ll take the risk of the vaccine over what the virus might do to me, but that’s because I’ve seen what “mild” viruses can do to people when their immune system is already primed to self-destruct.

I’ve got friends who caught common colds and haven’t left their beds in years because it caused them to develop ME/CFS so severe they never bounced back. It’s wild all the ways the human body can break without killing us.

If the vaccine was the cause of your POTS, I’m sorry that happened to you. It’s shit when it happens. Hopefully it’s some small solace knowing you’re better protected from HPV and the complications that can arise from it, though I wouldn’t blame you if you’re not there yet. Grieving a chronic and lifelong condition like POTS is a shitty, difficult thing. I wish none of us had to go through it.

[thebibliosphere]

Hello, I apologize if this is something you've already talked about or you've answered this question before or don't want to speak more on it but I saw that ask you responded to the other day that your 'mast cells burnt down your gi track' and I wanted to ask what the name of that condition is called? Several years ago I randomly lost 45 pounds and couldn't explain it. And while I already had gi issues before, after it happened I started developing new ones that got worse with time to the point that now I am physically unable to work. There are a lot of other factors with my situation that could be to blame but I've gotten an absurd amount of various tests with no answers to show for it. And now I'm wondering if maybe whatever happened to you has happened to me.

Oh, bestie, you're all good; all I do is bitch on this app about having mast cell dysfunction.

There are a handful of different mast cell disorders, but my condition is known as Mast Cell Activation Syndrome, or MCAS for short. If you want to know what a mast cell is and how it operates in the immune system, I'd recommend checking out The Mast Cell Disease Society:

They're currently redoing their content, but there's still a wealth of information on there.

You can also search my blog for #MCAS and find a handful of posts where I break it down in detail, along with the current flaws in testing for mast cell patients.

The reason I lost a lot of weight was because my mast cells made my GI tract so inflamed that I couldn't digest anything I was eating. It was going in through my mouth, causing excruciating pain and giving me no nutritional value whatsoever.

Histamine type 2 blockers, such as famotidine/pepcid used to treat acid reflux, can help with GI inflammation from mast cell dysfunction (the GI tract is lined with histamine receptors), but I needed extra support, which I finally got late last year when my GI doctor realized after a biopsy that I was being undermedicated and needed more help managing my MCAS.

If you want to ask more specific questions, I'm happy to try to answer them, but I'd suggest reading through the above link first to see if any of it resonates with you.