When do I give up Cystoprotek?

[glassd18]

I've been on Cystoprotek since Feb this year. I had a couple of small breaks from it because I didn't order it on time. I'm still flaring. I have been whatching my diet etc... Anyone have any idea when I should just stop this product? I'm still taking 3 tabs 2x'x daily. Any input would be appreciated. I do realize that it can take time for it to work.

[asilva]

I'm sorry it hasn't seemed to help you yet. I started taking it around the middle of Jan., and I started noticing some relief within a couple of weeks. I can't say I'm in remission, though, as I still get flares and some days are pretty good, and some are worse. I do think that overall, though it has helped, and I plan to keep taking it. I haven't started on Elmiron or Elavil or the typical drugs that others take for IC, as I want to give the alternative plus diet route a chance to work first, and my uro is fine with that. I'm also doing HRT right now with my gyno and seeing if that helps. Too soon to see a difference yet. Hope you get better soon. I know that others have said that with Elmiron it sometimes takes 6 months or even a year to notice a difference, so CystoProtek may take that long as well.

[icnmgrjill]

Glass, you're getting close. Are you doing a voiding diary at all?? Has your frequency levels changed??? Getting up less at night or during the day??? Also... are you being PERFECT at avoiding those top five forbidden foods.,.. cause even one cup of coffee a day is going to defeat any chance of cystoprotek or any therapy working well for you.

jill

[quinto555]

Sorry, what are those top five forbidden foods.:hmm:

[glassd18]

Thanks asilva. Hopefully something will turn around for me soon. I too am not taking Elavil or Atarax. I'm doing the alternate route too, but I will definitely give the others a try if I have no success with this. I'm willing to try anything, legit that is, to suffer less. I glad you see an improvement. I hope you recover 100%:angel:

[glassd18]

Hi Jill, Ya I'm avoiding coffee, soda's, chocolate, citrus fruits and juices like the plague. I drink mostly chamomile or peppermint tea and sometimes the ICN shop recommended teas. I am not keeping a voiding journal (bad me)!! I keep intending to start one, but never do!! I'll work on that one!! Thanks for your input. Left alone on this I would be sooooo lost!!! You gals are angels.

[sandi303]

Glassd18, you said you took several breaks due to not ordering in time. How long were the breaks you took? Perhaps that had some effect on you not seeing results? CystoProtek worked well for me, but I was watching what I ate & drank very, very closely.....

[glassd18]

I took two breaks, one was a couple of weeks the other a couple of days. I have watched what I eat very carefully except for a couple of cheats at a party, and I made a huge mistake last night.

I was feeling very well yesterday and tried a root beer with a ton o ice at Ole Country Buffet. Man am I suffering today. There was hardly any root beer in the glass, more ice than anything. I don't know if it was the food which was all IC menu food except that maybe they put msg, not sure. I am sick as a dog, and madder than hell at myself, IC, and the doctors for not knowing more. Almost didn't make it to work. Sigh!! Anyhow one would think that I'd have some improvement by now because most of the time I follow the diet etc... very strictly except for the couple of mishaps I mentioned. I can't believe that 1 tiny cheat would do so much harm. I am seeing my uro very soon and I'll ask her about all this. Thanks for your help. Won't be doing any more dietary exploring for a while. Some days I eat something and no symptoms other days symptoms. Makes it very difficult to determine what exactly is causing the problem.

I finally started a voiding journal yesterday.

[sandi303]

Glassd18, I know what you mean about drinking the root beer. I tried drinking root beer several times & every time I flared. And I know I've read on here where others can drink it with lots of ice. Ah well.....

I would think that the break of a couple weeks would not be good. Especially if you hadn't been on it that long. I know one of the ladies I talked to at alganot said to take it faithfully & not miss any doses in the beginning. It takes awhile for it to start doing its thing. So it may be that the timing of your breaks has effected how long it's taking to work. Or there could always be the possibility that it's just not gonna work for you. I would hate that for you, cause it has worked so well for me.....

[glassd18]

Thanks Sandi. I'm just frustrated, as I'm sure many others have been or are as well, in their IC journey. I really do hope it kicks in. I'll try to have patience, and a prayer or two wouldn't hurt either. I pray everyday for everyone here on this site for a recovery.

[glassd18]

I'm still having symptoms even on the Cystoprotek. Anyone think I should give up yet? Or anyone have any other ideas like switching alternatives to Bladder Q or Desert Harvest Aloe or something? I'm going crazy again. If cystoprotek was working well would I be able to eat something in the maybe IC friendly column of the diet. I can't figure out if it's what I'm eating or if the alt med isn't working. Going bonkers here!!! Any help would be appreciated.

[talksick]

Hi Glass,
Are you relatively new to the IC diet? I know when I first started I wasn't avoiding as much stuff as I should have been. You gotta be careful and think about additives and preservatives in everything. Especially when you eat out. For example, in my early IC diet days I'd be like....oh "plain" grilled chicken sandwich I can eat that. But the problem is most restaurants and fast food joints marinate their chicken breasts in stuff that contains MSG or citric acid or other no no ingredients.....even if it tastes plain it might not be. So just be very careful with your diet.

I take Cystoprotek too and I have found that it helps but it certainly doesn't make me totally pain free or never get flares. However, I think that it helps me enough to warrant my spending money on it. So, if you have seen some improvement, you might just wanna evaluate if you think its worth your money. Also, you might wanna add something else to the mix because most ICers find that they do best on multiple meds. If your trying to go the natural route...maybe some of those aloe vera capsules they sell in the ICN store?
Kim

[glassd18]

Hi Talksick, ya I'm quite new, since March 2006. I usually haven't ventured to far off the diet. I did eat chicken from Arby's alot lately because they are saying on their commercials that it is preservative free, and all natural. Believe it or not I have had chicken mcnuggets from McDonalds and have had any problem. This diet thing is tricky, but you've made a good point. Maybe I'm not being strict enough. I'm terribly miserable today. So sick. Cried this morning. I can't seem to get it back under control. I have a drs appt tomorrow. I wish we had a list of restaurants do's and don'ts, but what bothers some doesn't bother others. Maybe we could try to gather data regarding this if it doesn't already exist. Thanks!!

[glassd18]

Hey I found out today at my doctors appointment that I made a mistake on how long I've been taking Cystoprotek. It's been only 3 months since I restarted it. My Dr put the note in my file. It's exactly 3 months to the day today that I saw her. I also order Desert Harvest Aloe yesterday. Hopefully I'll see some results.