Apf

[Derrick]

Hi,

Didn't know where to post this, but there was a good article on APF on the Internet.

Maybe the time has come to create a APF discussion area on the ICN!!!

Yahoooo!

http://www.qctimes.com/internal.php?story_id=1033219&l=1&t=Health&c=9,1033219

Sure would like to know whether or not they found APF in my urine when I participated in the BCG trial at Stanford. Has anyone found out their results?

Derrick

[kadi]

Don't know yet, I "donated" my urine to the study at Univ of Maryland. Unfortunately it will be frozen for 2 years. They'll notify me then when they thaw it out & test it!

Did the BCG help you?

[Derrick]

Nope. BCG didn't help. Waiting for the next "big thing."

[kadi]

Rats. Sorry. I hope they figure this thing out soon...

[Dixiefireball]

Thank you.

[ICsmiles]

I have been following the research by Dr. Keay for a couple of years - hopefully the discovery of APF - Anti Proliferative Factor - the protein that keeps our bladders from rejuvenating the lining - will result in a new treatment soon. I understand their early research on that was effective - but that it resulted in growing more than just the lining - that it started tumors growing as well.
I am PRAYING that there is another breakthrough.
And I THANK Dr. Keay for her research.

[Annie2]

So glad you brought up this topic! Many of us have been following Dr. Keay's research. APF has been identified, synthesized, is known to be produced in the bladder and is not produced by those without IC. We also know the damaging effect of APF on bladder epithelium cells. Yes, further research is needed to prove APF is the causitive factor of IC in living beings. The evidence of that being the case seems to strongly point in that direction. We also do not understand what might trigger APF production. That, too, must be researched.

We all are so frustrated with the lack of knowledge of IC within the medical profession. How many times have we ourselves experienced or read about others being mistreated by ignorant doctors or nurses? How many doctors STILL believe IC is nonexistant or is just a term used when no other cause can be identified? How many times have we read posts here by our fellow ICers who have suffered because they encountered one of these uninformed doctors or medical professionals?

My question now is has Dr Keay's research given us enough evidence to prove the existence of IC to these doubters? Yes, we still need proof that APF is the actual cause of the damaged bladder lining in IC. But is the evidence Dr. Keay's research has provided strong enough that we can now DEMAND the AMA, medical schools, nursing schools, etc. educate medical professionals about IC and the proper treatment of IC patients? It is my opinion IC patients will continue to suffer at the hands of uninformed medical professionals until we, as IC patients or loved ones of IC patients, absolutely insist this change. I also feel the current knowledge of APF provided by Dr. Keay's research gives us some of the facts we have long needed to be able to put pressure on medical education institutions and practicing physicians.

Anyone else care to debate this? I would love to see a discussion of this topic!

Annie

[ICsmiles]

Thank you Annie!
I loved your post - Doesn't this finally make SO MUCH SENSE - after all the theories... It sure helps me understand why some of the treatments don't make a heck of a bit of difference... I have such high hopes that there will be a new treatment based on this in the next few years...???? hope that's not wishful thinking...

[kadi]

I saw a new primary care doctor this week who said "IC is still controversial among a lot of doctors." I thought his comment a little strange at the time, but wonder now what's so controversial about it...