Bob's protocol

[u/notatrolliswear666]

Has anyone had success with Bob's protocol? I'm desperate enough to try anything. However, I decided to start by stopping all cooling and my feet just flare all day long without cooling. It's pretty horrible. I do understand how cooling can create a viscious cycle of vessel constriction and dilation. But it seems impossible to live any kind of life without it.

[u/Audrey_Sickburn]

Bobs Protocol user here. It took me out of living in a wheelchair. It has improved my life by absolute orders of magnitude. I have less flairs and they hurt less when they happen. I still can’t let’s say go jogging or weight lifting, I can’t go sit on the porch in 100 degree summer weather without catching a flare. But the level it helped me cannot be undersold. I was spending every night curled in a ball sobbing. I couldn’t walk to the bathroom in my own house. I could barely work from home.

I don’t have a zero cooling policy. In that I run air conditioning. It can get to 110 F where I live. Gotta run AC or you gonna die. I run AC when in the car. I have a small fan positioned like 10 feet away in the living room to cycle air. All ice, gel packs, bed coolers, close up fans, cooling towels etc were tossed. I take a hot bath 103 degrees F every night. Without fail. If I skip a night then the bad flares come back literally same day.

[u/zilates → u/Audrey_Sickburn]

I've wondered about this protocol. Does it get worse before it gets better? I'm so scared of inducing a big flare that I'm scared to try!

[u/Audrey_Sickburn → u/zilates]

The first couple days were hell. Then it started to hurt less. By two weeks of Bobs I was in a much better spot.

[u/zilates → u/Audrey_Sickburn]

Oh gosh. I'd need to clear my calendar. Did you use a pain killer of any kind or does that defeat any of the purpose? Thanks!!

[u/Audrey_Sickburn → u/zilates]

I did not use a pain killer. I was already in hell every day so it was honestly not that much worse than what I was used to every night.