Does anyone have porphyria? Specifically , acute intermittent porphyria. My doctor is testing me for this genetic condition. What's interesting is one of the triggers is low calorie high protein diet. I was reading for people who have it, it can lay dormant until triggered. It seems like , looking back through my life, I had flares. But whatever is going on now, is not fun.

Never heard of it. Hope you get answers.

You have done an amazing job and so close to your goal weight. Congrats on that!

Oh, I’m sorry @LindsayT.

Is yours one of the genetic porphyrias? They say it’s one of those disease/syndromes that many have but don’t know. At least you do now know what’s been behind your symptoms all these years, as unpleasant as it is. Hope the treatments they’re offering help ease your symptoms. Do they think stem cells may help?

I first heard about it watching Buffy the Vampire Slayer lol! It’s known as the vampire’s disease & from where they believe the myth of vampires began.

Edited February 17, 20242 yr by Arabesque

13 minutes ago, Arabesque said:

Oh, I’m sorry @LindsayT.

Is yours one of the genetic porphyrias? They say it’s one of those disease/syndromes that many have but don’t know. At least you do now know what’s been behind your symptoms all these years, as unpleasant as it is. Hope the treatments they’re offering help ease your symptoms. Do they think stem cells may help?

I first heard about it watching Buffy the Vampire Slayer lol! It’s known as the vampire’s disease & from where they believe the myth of vampires began.

That's funny. If this is what I have it's a genetic condition. I don't see how it would explain vampires though... Lol

On 2/16/2024 at 11:11 AM, LindsayT said:

Does anyone have porphyria? Specifically , acute intermittent porphyria. My doctor is testing me for this genetic condition. What's interesting is one of the triggers is low calorie high Protein diet. I was reading for people who have it, it can lay dormant until triggered. It seems like , looking back through my life, I had flares. But whatever is going on now, is not fun.

I don't have this but I was tested for it during an Epstein Barr Virus flare... I remember it can mimic a fair few conditions. I think the vampire myth came from it because of the relation to heme helping alleviate the symptoms of certain porphyria if the attack is caught early. Of course in reality this needs to be a heme analog given through IV, not heme in human blood consumed with fangs, but what is accuracy in historic myths?? LOL

I'm so sorry you are dealing with this. Unfortunately with any significant trauma to the body (car accident, illness, surgery, death of a loved one) you can trigger an autoimmune condition or genetic condition to express itself. It's frustrating because there is no way to know if something will cause it, and there is no way to know what genetic things lie dormant in our systems, waiting to be triggered and misbehave. I hope they have luck with all the testing and find a source to the symptoms you are experiencing... It is distressing to have things going on and not know the cause of them. ❤️