Hey, Can you tell me more about your AP therapy. I lurk around here and post a little bit but have been diagnosed since 2002. My RA Factor was in the 1800 range!!!! Crazy I know but I usually feel good. Just a little problem now and then. I have thought about AP therapy but my Rheumatologist wont hear of it. He is a biologics doc and doesnt like anything else. I cant really change because his group is the only group in the area.
Thanks for any info. I know alot of people dont like AP but I like to keep all options open!!!!
Hi Jules,Hey Jules!
I LOVE to talk about AP and so far nobody has booted me off - yet! LOL.
GoGo gave you the two best places to get an idea of how the process works. I think the RB saved my life - and defininately my sanity!
Another thing you can do is get the book "The New Arthritis Breakthrough" by Henry Scammell. It breaks the process down with a little bit of the science and a personal story that illustrates the point made. You can order this from Amazon or your local Borders.
I found AP while researching stuff on the Internet. I was trying to find out why my RF was so high so ran searchs on "over 400" and "over 500". I kept getting hits for www.rheumatic.org. For quite a while I ignored them because I thought they were "some sort of RA cult" like I told my husband. But one day I just started reading the testamonials, one after another, and it just felt right to me - exactly what I was going through - so I followed the link to the Road Back and started just reading it and watching the posts. After a while it all starts making sense, so cult or no cult, I jumped right in. I am so glad I did.
So - 1800!!! And you're not on the floor writhing in pain? I was begging to die when I got to the 600 range - and laugh now because my being in the mid 300's - low 400's is a cake walk! You are the 2nd person to tell me their high numbers were not that bad. I have no idea why that would work like that. I'm no longer convinced that these standard tests really mean anything. Time and time again people post about being in 'medicine induced remission' yet they feel like ...Hellsinki... or that they are swollen and red and hurt like...Hellsinki... yet their RF are negative.
All I do know is my doc was kind of happy to see my high RF factors and went so far as to tell me he could predict AP would work for me because of that. That's when he said the part about the antigens but at that point I was stupified from pain and probably wouldn't have remembered that at all except my hubby was there as the brains/translator of the situation.
There is a girl on the RB who had RF in the 7400 range. Yep, you read that right. There was also a post from some biotech company a while back looking for people over 2000 to test. I think they were trying to find out why some peoples bodies were fighting so hard.
Do you know what your CPR is? Mine is still high and I really want to bring that down kind of fast - that's the one that is linked to heart disease, which is all over my family.
Do you know if you had a recent infection just prior to your RA onset? Mine was an abscessed tooth. People that go so far as to be tested for mycoplasma infection are sometimes surprised that what they test positive for (if they test positive at all) is something they had a lot as a child. For me it was strep. And I tested negative for c. pneumonia but just had the darn thing reactivate on me as I knew it would.
I did go for the testing because I knew eventually I'd want to do IV's and I wanted to have proof of infection so my insurance would cover it.
I had been working my way through my city trying to find a doctor to monitor me on AP. AP is something you can do on your own (the RB will KILL me for saying that - they recommend getting a doc) but was not something I was willing to do because of my personal history. Unfortunately I am (was?!?!) a medical error magnet and I just figured if something can go wrong, it will, so I wanted somebody on board willing to learn enough to help me if something DID go wrong. At about doctor 3 or 4 (I'm at 10 or 11 now) I got mad and fed up and we decided to make an appointment out of state so I could at least start AP. If I hadn't I'd still be looking for a local doc.
I guess what I'm trying to say is - do the research, read, ask questions (feel free to email me) - but don't let the lack of a local doc stop you. If what you learn makes sense - go out of state if you have to. I did and do not regret it for a moment. I left my GP of 6 years and haven't looked back. My husband and my baby need me to be there for them and I wasn't going to be with what these docs were offering me.
Pip