Hi everyone! I am very eager to get your opinion. I am asking: What would you do if you were me?
In April, I had my third life-threatening SCLS attack in 18 years. I was not on IVIG at the time because I wasn't yet diagnosed. This attack was triggered by the second dose of the Moderna vaccine. I am patient #2 in Dr. Druey's study on vaccine-induced attacks.
Now that I know I have SCLS, I am on IVIG. But I genuinely do not know if I should get the booster. These are the questions and thoughts that keep running through my mind:
- Covid is deadly for SCLS patients, unless they're on IVIG.
- The vaccine is not deadly for SCLS patients, as long as they're on IVIG.
- I am on IVIG, so I should be protected from BOTH covid and the vaccine.
- BUT, I've already had an attack induced by the vaccine. Does that make me more likely to have an attack again, even if I'm on IVIG?
- No one knows the answer to that question, even Dr. Druey, because I've asked.
- Is getting the booster worth the risk of having an attack, especially if IVIG should also protect me from an attack if I do get covid?
I think about this all the time. I was actually scheduled to get the booster at NIH with Dr. Druey last month. I was going to be in the hospital for five days so they could observe me. But I started having panic attacks and cancelled. I imagined knowingly putting myself into a situation that could lead to an attack and it terrifed me.
If you were me, would you get the booster?
Thank you so much for sharing your opinion. There are no other people in the world who will understand.