anyone try Algonot OR Cystaprotek OR Aloe vera as a !st choice treatment???

[lavendermoon]

Hi All-
STILL wading thru the treatment options...wonder if anyone out there has tried either Algonot OR cystaprotek as a !st choice option for treatment rather than the elmiron etc...???Or what about the Aloe vera I read about?
My symptoms are almost constant ,moderate ,burning/tingling with a bit of urgency. My uro has taken a "wait see" approach advising me to not worry so much about the diet and go to PT-but she is open to whatever I want to do...well, I'd like someone to make a decision for me, that's what! Ha!! Ha!!Anyway....having read some articles that suggest this is a progressive disease I feel like I should be proactive and do something now...I would hate to feel worse than I already do!
thanks for your replies!:confused:

[Katrina]

:welcome: nice to see Wisconsinite around.

Alternatives were not the first treatment I tried but I will tell you my experience anyway. Algonot I tried without noticing anything but I didn't give it the full 3 months.
Aloe Vera helped me a lot and I still use it everyday.
PFD newsletter posted http://www.ic-network.com/forum/showpost.php?p=256636&postcount=11
Because of your symptoms I suspect that some of your symptoms are from PFD. So I'd say that I think your uro may be right....although I don't think I would have said don't bother with the diet...I would suggest PT.

There was an article that came out recently about a person who had progressive IC....but that is very unusual!!!!!!!!!! Most patients improve with time! Don't worry too much! Feel free to private message me or contact me anytime :)
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

[sandi303]

I chose to go with Cystoprotek rather than Elmiron - against my dr's wishes. I started taking it in January of this year & started seeing results within a couple months. By 6 mo's I was noticeably better. I still continue to take it - usually 2 to 4 a day. It was definitely a miracle worker for me!! However, I don't think I would've seen such good results if I hadn't been following the IC diet strictly in the beginning.

At my latest dr appt, when I told him how well I was doing on Cystoprotek, he actually was quite aggreeable to me taking since it has worked so well for me.

Good luck with trying to decide what to take! And if you decide on Cystoprotek, I wish you as much success as I had!!

[lavendermoon]

dear sandi,
why was your Dr. against cystoprotek-do you know? Its wonderful to hear you are doing better! are you taking anything else? Do you still have pain/urgency? thanks.

[lavendermoon]

On Wisconsin!
thanks for your reply Katrina...and the hope that this maybe won't get worse....I haven't noticed much decrease in symptoms except midway thru my monthly cycle and had about 6 days/nites of bliss...then a visit to the ur and a cysto started it back again...sigh
thanks for the info/sites.

[sandi303]

Lavendermoon, my doc is just not big on alternative supplements. He wouldn't even discuss Cystoprotek with me when I tried to tell him what all was in it & why I thought it might work. Of course, to be quite honest, when I decided to try & discuss it with him I had already made up my mind I wasn't going to take Elmiron, so it was probably not a very conducive situation for compromise on either of our parts.

The only other things I did in the beginning was watch my diet faithfully, I took probiotics (more for IBS, than IC), drank lots of distilled water (not tap water) & used my heating pad alot. I honestly believe that, by sticking to the IC diet it allowed the Cystoprotek to work & soothe my bladder.

I haven't had burning, urgency or pelvic pain for over 4 mo's, but do still have frequency.

Due to just recently being diagnosed with Grave's Disease, I'm now forced to take a prescription drug for that as I've not found an alternative I feel comfortable trying & have noticed that I'm starting to have a slight burning sensation again, which is a real bummer.:mad:

Good luck with your search to find what works for you! I know it's so very difficult in the beginning to figure it all out. I tried a good many other alternative things before I finally found this board & Cystoprotek.....