Report After Surgery Study

**mayray518** · 03-23-2005, 05:23 PM

I went over to the University of Maryland in Baltimore where they are undergoing an extensive IC study. They took 4 biopsies of my bladder and going to study them to see if the APF exists in the bladder walls. They also took a lot of blood; in the future they think they may be able to determine by a gene. Anyway, it was very interesting and I will get back to all of you on the findings after Dr. Chai contacts me.

**ICLori** · 03-24-2005, 01:56 AM

Thank you, sweetie, for doing this for us. I am anxious to see what the study finds.

Just curious, don't know if you've heard anything or not, but...is anybody looking for a good remedy for IC? Or is everyone still just concentrating on the "how do we identify IC" end of things?

I hope that someday someone might concentrate on trying to find a cure or at the least, a good remedy, for IC.

Blessings, Lori

P.S. I am finding the Bion apparently does not eliminate IC pain. Had a bad day yesterday

Feeling like maybe I just need to go ahead with bladder removal.

***ICNDonna*** · 03-24-2005, 02:44 AM

Lori, if it's like other research, once a cause is found, a cure may not be far behind. Hopefully, once they find one thing that's common to all IC patients, they can work on how to defeat that one "thing."

Then we can have a party!

Donna

***SharonA*** · 03-24-2005, 03:16 AM

Lori...I sure hope yesterday was just a fluke and not a trend. I so hope you do not have to continue to consider the bladder removal.

Donna...I am SOOOOOO ready for that party!!!!!!!

**ICLori** · 03-24-2005, 05:17 AM

Thank you guys

I went ahead today and bought some artichoke extract capsules at the vitamin store. Going to try to see if those soothe my bladder like eating a whole artichoke does. That would be nice. Plus the pills aren't so expensive, about $9.00 for 60 of them, maybe if I only need a couple a day, that would only cost $9.00 a month...

I don't know, I'm still trying this and that.

I probably shouldn't be so disappointed. My frequency is way way down - probably going only about 1/3 as much as I was before - and I should concentrate on how lucky I am to get my frequency reduced by so much.

Plus, I don't spend as many hours per day as before with that irritated bladder feeling - so I am getting some help that way too.

It's just that I was really hoping this would make me feel like "normal" again completely - and so far it doesn't seem to get me all the way back to "normal."

Well, no big deal, there are still lots of supplements out there to try, I refuse to give up hope! Plus there is so much great research going on, surely there will be a good remedy or even a cure within the next five or ten years.

Blessings, Lori

**diane57** · 03-24-2005, 05:55 AM

Lori, hang in there. I know it's hard to see things clearly when you're discouraged and tired of fighting the pain, but from my read of your post it seems like you're making very good progress. It's probably frustrating that the progess is so SLOOOOOOOWWW, with setbacks here and there, but a 66% reduction in frequency and a reduction in bladder irritation is really good!! It's great that you're trying so many alternatives, I'm sure eventually you'll hit on the right combo.

I'm intrigued by the artichoke theory, after reading one of your prior posts I ordered one at a restaurant (not sure I could wrestle with it at home) and it really did taste soothing, healing, alkaline. Keep us posted about your experience with the capsules.

Diane

***SharonA*** · 03-24-2005, 06:00 AM

Mayray...I am wondering if you are having any discomfort from the biopsies? Looking forward to hearing about the research.

**mayray518** · 03-24-2005, 07:15 AM

Thank you all for responding. Nope no discomfort. They gave me valium but was awake during the procedure. Just a little burning afterwards but other than that nothing. They are going to let me know the results to see if the protein is in the biopsy and they also took a lot of blood. They think that in the future they may be able to determine if someone has IC from a blood test. It :woohoo: may show up in a gene we all carry. Many things are happening now which I am grateful for.

**mlb** · 03-25-2005, 03:51 AM

Thank you for posting MAYRAY, how did you get lucky enough to be in this trial? Can anyone do it? God bless you for doing this and God speed the results and a good CURE or at least RELIEF!!!!!!!!!!!!!!!!!!!!!

***SharonA*** · 03-25-2005, 04:13 AM

A blood test... :woohoo: Now wouldn't that be a relief from having to do the Potassium Test or the Cysto/Hydro.

I'm all for anything that will reduce the amount of invasive procedures and pain that many of us endure just to get a diagnosis. I hope this study is successful.

I am so glad you are not in any pain from it.

**mayray518** · 03-26-2005, 07:43 AM

Lori, in answer to your question, I think they are concentrating on what they think causes IC. If they find that many of us carry the protein then they will need to eliminate that protein and bingo. I understand why you want to go ahead with the removal, I was so miserable at one point I begged a doc to do it. Have you thought of the neobladder where they use part of the bowel?

**QueenJutea** · 03-26-2005, 10:21 AM

Hello everyone,

I'm back trying to get you ladies to listen to me. I do this everyone once in awhile.
Since most of us here have tried all the usual doctor tricks and tortures to no avail I want to implore everyone on this board or reading this board to GET YOU VITAMIN D LEVELS TESTED. Now DON'T start taking extra Vitamin D. NO! NO!

There are two vitamin D tests not one. The first is 25D and the second is 1,25D.
These are simple blood tests. However the 1,25D must be frozen after the draw. Quest Labs routinley do this. The 25D results indicate the amount of vitamin D you are ingesting thru foods and supplements. The 1,25D represents the amount of active hormone that is being made by your liver. The 1,25D is the key number. A high 1,25D indicates a TH1 inflammatory response. This is caused by Cell Wall Deficient bacteria that cannot be gotten rid of by the simple use of antibiotics. NO! NO! This is only achieved with the use of an angiotensin receptor blocker and then ramped doses of very specific antibiotics.

It would be interesting to see if IC patients have high 1,25D levels. I have IC and chronic fatigue. I know I have read posts by people on this board that also complain of Fibromyalgia and CFS. Don't forget MS, and Rhuematoid arthitis, Lupus are also autoimmune disorders. Plus a whole host of other diseases.

Think outside the box. What can it hurt to get your D levels tested.

**mlb** · 04-06-2005, 04:50 AM

Very interesting about the vit. D. A note to anyone who is thinking of bladder removal, I have a dear friend who did it and got the neo bladder, and now it is infected and hurting as bad as the bladder did. She's had it two years and is miserable.

I ask that anyone who is inclined to write to Dr. Susan Keay and encourage the researchers. I hear they are going to Japan next week. Pray for good news.