[Jesse88]

This thread is just the kind of information I am looking for. I also just finished "The Road Back" which discusses the merits of AP (antibiotic protocol) and was all set to try it but my RD flipped out. He said it's dangerous for someone like me with neurological symptoms and the data just doesn't support AP. But there are many people who have done well on it so I'm also wondering, like Renee. At least now I know I'd have to avoid minocycline. That's important information.

 

[Jesse88]

Thanks Clare. This is important information Renee, I and anyone researching AP can use.

 

[Jesse88]

Karol, I think the AP people would call what happened to you a "herx" which means the symptoms get worse before they get better because when the infectious cell is being destroyed by the antibiotic, it gives off some sort of toxin as it's dying and that's why you feel worse at first. Whether that's all true, I just don't know. This is all just too confusing for me!

 

[Jesse88]

Thank you all. It's good to get your feedback. And Clare, you are a wealth of information on this subject. I struggled with whether to try AP when I was still dx'd UCTD. I guess the lupus dx makes a difference. Since I'm also deaf in one ear, I was trying to figure out which of the AP drugs would not threaten my hearing ear. I understand there is that problem as well with some of the AP drugs. I was desperate to get off of the MTX because of side effects and thought the only way to go was to try and minimize my need for it by trying AP. Now that I'll be starting Imuran instead of the MTX, I'm hopeful I won't have the same problems.

 

[Jesse88]

mty: Are you taking the Plaquenil with food? I find that very helpful.