Cystoprotek log for Helen

[HB]

Cystoprotek log for Helen
(to share my experience with the ICN)

Sat 02/25/06 - called Algonot and asked for a free 5 pill sample pack.

Thu 03/02/2006
- The sample pack arrived along with a GREAT information package and CD
- took my first Cystoprotek pill from the sample pack - no adverse reactions.

Mon - Thu, 03/06/06 to 03/09/06
- took the rest of the sample pack, (1 a day). No adverse effects from the sample pack!

I think it may have increased my thirst a little, but not bad. I felt pretty good - but I attribute that to the 2 or 3 Aloe gel caps I have been taking 2x a day for the past month. Whenever I get into a flare Aloe almost always helps calm my bladdder down.

Thu 03/16/06 - ordered Cystoprotek Starter Pack

Mon 03/20/06
I'm actually doing very well, for the past month while I've been researching what to try next I've been taking Aloe gel capsules. The Aloe has really helped a lot. Today was my best day in years, I probably drank about 60-80 ounces of water and only voided a few times today - large volume voids too! How ironic, since today is the day I received my package of Cystoprotek.

Since I've already ordered the Cystoprotek and I've read that others are taking Aloe vera along with it too - that is what I will do, take Aloe vera gel capsules + Cystoprotek. Granted, I will not know which one helps more but I'm not about to give up the Aloe gel caps now, the aloe relieves most of the urethral burning I often have and seems to reduce the number of times I have to urinate (void). I also take Prelief with every meal - which I am NOT giving up either.

Trying to log the following:
cysto.= cystoprotek capules
aloe = aloe gel capsules
Prelief
SG= supergreen capsules (trying to raise pH of urine to more neutral)
#v= total number of voids that day
DR#= rate the day, 5=GREAT, 4=GOOD, 3= FAIR, 2=BAD, 1=HORRIBLE
burning and general comments
--------------------

Week 1: 03/20/06 - 03/26/06
- I had increased burning, but the aloe gel capsules helped to relieve it.

Mon -1 cysto., 2 aloe, #v6, DR5, 1 generic benedryl at night, no burning
Tue -1 cysto., 3 aloe , #v13, DR2, felt like I had to go constantly, burning
Wed -2 cysto., 2 aloe, #v7, DR3, had terrible "oily after-taste", some burning
Thu - 2 cysto. (frozen), 4 aloe , #v7, DR4, some burning in AM, better in PM
Fri - 2 cysto. (frozen), 4 aloe, 4 Prelief, 4 SG, #v10, DR3, a lot of burning, tried baking soda in water too
Sat - 2 cysto. (frozen), 7 aloe gel CP, 7 Prelief, 0 SG, #v8, DR4, pretty good day, some burning - aloe helped
Sun - 2 cysto. (frozen), 6 aloe gel CP, 6 Prelief, 4 SG, #v8, DR4, pretty good day, lots of burning but aloe gel caps stopped it

Week 2: Mon 03/27/06 - Sun 04/02/06
dosage increase to 4 Cystoprotek capsules
I had some burning and some bladder pain this week but I think the pain is from holding it too long - I'm trying to wait as long as I can but the fact is I am not having the urge to go. The frequency is lower and the volume I am voiding is much more. I don't know if it's the aloe gel capsules or the cystoprotek or the combination but I'm keeping up with both.

Mon- 4 cysto., 2 aloe gel CP, 5 Prelief, #v12, DR4, good day
Tue - 4 cysto. , 6 aloe gel CP, 4 Prelief, #v10, DR3, some pain and burning
Wed - 4 cysto., 6 aloe gel CP, 7 Prelief, #v7, DR4, good day
Thu - 4 cysto., 6 aloe gel CP, 3 Prelief, #v6, DR5 great day - 6 aloe gel caps seems to be best dose for me
Fri - 4 cysto., 6 aloe gel CP, 5 Prelief, #v6, DR4, good day
Sat- 4 cysto., 6 aloe gel CP, 6 Prelief, #v7, DR4, good day
Sun- 4 cysto., 6 aloe gel CP, 5 Prelief, #v5, DR5, very good day

Week 3: Mon 04/03/06 - Sun 04/09/06
start taking 6 cystoproteks caps this week - (mostly frozen), good week this week!

Mon - 6 cystoprotek, 9 aloe gel CP, 4 Prelief, 2 SG, #v6, DR5, very good day
Tues - 6 cystoprotek, 7 aloe gel CP, 6 Prelief, 0 SG, #v5, DR5, very good day - low freq. and large volume voids, no burning
Wed - 6 cystoprotek ,6 aloe gel CP, 4 Prelief, 0 SG, #v5, DR5, very good day
Thu - 6 cystoprotek (frozen), 6 aloe gel CP, 6 Prelief, 0 SG, #v7, DR4,
-- good day...bladder hurt from holding it too long but other than that good.
Fri - 6 cystoprotek, 5 aloe gel CP, 6 Prelief, 2 SG, #v6, DR4,
-- my abdomen is tender but otherwise very good day
Sat - 4 cystoprotek, 4 aloe gel CP, 4 Prelief, 0 SG, #v9, DR4, good day
Sun - 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 0 SG, #v8, DR5, very good day


Week 4: Mon 4/10/06 - Sun 4/16/06
-- kept forgetting my mid-day dosage, had another good bladder week.

Mon - 4 cystoprotek, 4 aloe gel CP, 4 Prelief, 0 SG, #v7, DR5, very good day
Tue - 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 0 SG, #v8, DR4, good day
Wed - 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 2 SG, #v9, DR4, good day
Thu - 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 0 SG, #v8, DR4,
-- some pain but otherwise good day
Fri - 4 cystoprotek, 2 aloe gel CP, 9 Prelief, 0 SG, #v10, DR4, good day
Sat - 4 cystoprotek, 4 aloe gel CP, 6 Prelief, 0 SG, #v8, DR4, good day
Sun - 4 cystoprotek, 4 aloe gel CP, 6 Prelief, 0 SG, #v10, DR4,
-- some burning (after eating lots of different foods)


Week 5: Mon 4/17/06 - Sun 4/23/06
--Very good week, just a little burning one day, and a little urgency from having coffee.

Mon - 6 cystoprotek, 6 aloe gel CP, 2 Prelief, 0 SG, #v5, DR4
Tue - 6 cystoprotek, 2 aloe gel CP, 4 Prelief, 0 SG, #v5, DR4
Wed - 4 cystoprotek, 4 aloe gel CP, 4 Prelief, 1 SG, #v8, DR4
Thu - 6 cystoprotek, 6 aloe gel CP, 6 Prelief,1 SG, #v7, DR4
Fri - 6 cystoprotek, 2 aloe gel CP, 5 Prelief, 0 SG, #v8, DR4, had coffee this morning, caused some urgency
Sat - 4 cystoprotek, 4 aloe gel CP, 5 Prelief, 8 SG, #v8, DR4
Sun - 6 cystoprotek, 4 aloe gel CP, 8 Prelief, 0 SG, #v11, DR3, had burning today

Week 6: Mon 04/24/06 - Sun 04/30/06
-- another very good week

Mon - 6 cystoprotek, 6 aloe gel CP, 6 Prelief, 0 SG, #v5, DR5, great day
Tue- 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 0 SG, #v7, DR4
Wed - 6 cystoprotek, 4 aloe gel CP, 2 Prelief, 2 SG, #v7, DR5, great day even had a cappachino this morning.
Thu - 6 cystoprotek, 4 aloe gel CP, 4 Prelief, 0 SG, #v5, DR5, great day only voided 5 times - it's almost unbelievable.
Fri- 6 cystoprotek, 6 aloe gel CP, 4 Prelief, 2 SG, #v7, DR4
Sat- 4 cystoprotek, 4 aloe gel CP, 4 Prelief, 0 SG, #v6, DR4
Sun -


---------
no more daily entries - weekly summary for Weeks 7-16
Week 7: Mon 05/01/06 - Sun 05/07/06-- great week had a couple of days with not having the urge to go for 4 to 5 hours

Week 8: Mon 05/08/06 - Sun 05/14/06--great week mostly voiding 7-8 times a day

Week 9: Mon 05/15/06 - 05/21/06 bad week.
05/15/06 - Mon STRESS got me - started a flare. I voided 15 times and then I quit counting,
05/16/06 - Tue #V18. Voided 18 times today and I was miserable. I had the CONSTANT urge to go all day going every 20 minutes. I guess I am in a flare - I took AZO Standard in addition to the cystoprotek and aloe.
05/17/06 - Wed #V13
05/18/06 - Thu 6 Cystoprotek, 6 aloe gel CP, ~4 Prelief, 0SG, #V10, DR 3 feeling better
05/19/06 - Fri #V6 feeling much better

Week 10: Mon 05/22/06 - 05/28/06
good week again, avg #voids 8x day

Week 11: Mon 05/29/06 - Sun 06/04/06
good week - avg #voids 8x day

Week 12: Mon 06/05/06 - Sun 06/11/06
good week - avg #voids 8x day

Week 13: Mon 06/12/06 - Sun 06/18/06
good week - avg #voids 8x day
cut back to 4 cystoprotek, 4 aloe per day since I was running low on Cystoprotek
06/18/06 - Ordered more cystoprotek

Week 14: Mon 06/19/06 - Sun 06/25/06
06/19/06 Mon - 4 cystoprotek, 4 aloe gel CP, 6 Prelief, #v7, DR 5 - feeling great, ~4 hrs between voids at work
06/20/06 Tue - 4 cystoprotek, 4 aloe gel CP, ~8 Prelief, #v10, DR 4
06/21/06 Wed - 6 cystoprotek, 6 aloe gel CP, 6 Prelief, #v7 DR 5 - feeling very good
(2nd order of Cystoprotek came today)


Week 15: Mon 06/26/06 - Sun 07/02/06
good week 6 cystoprotek, 6 aloe gel CP, Prelief with meals good week- avg #voids 8x /day

Week 16: Mon 07/03/06 - Sun 07/09/06 good week
6 cystoprotek, 6 aloe gel CP, Prelief with meals
good week - avg #voids 8x /day

After 07/10/06
I'm on the maintenance schedule now.... 4 cystoprotek, 4 aloe gel CP per day, Prelief with meals, also antihistimine at bedtime (I have been taking Allergy medication at bedtime this spring/summer which tends to calm my bladder too. )

I am doing very well - I can even have a soft drink now (with Prelief) and it doesn't bother me. This is pretty risky for me but I wanted to "test" it. I won't drink them everyday - but it is nice to be able to have one now and again.

I would say that the 6 Cystoprotek with 6 Aloe Vera gel capsules has been a very good combination therapy for my IC. I've cut back to 4 & 4 and am still doing well!


I didn't keep a detailed daily log after 6 weeks - I was really doing great until the 9th week when I had a set back due to stress...then I got back on track and have been doing great from the 10th week on.

[DONNAW]

I Just Ordered Cystoprtek Yesterday. I Am Desperate For Help. Has Anyone Out There Used This Procuct? I Am Also Curious About Anything Else I Can Try. I Have Been In A Flare For About One Month Now. I Have Four Children And A Full Time Job. This Is Making My Life Unbearable. I Had A Hystorectomy Almost Two Years Ago. I Am Assuming I Didn't Really Need .

[DONNAW]

:headbang: :headbang: I Just Ordered Cystoprtek Yesterday. I Am Desperate For Help. Has Anyone Out There Used This Procuct? I Am Also Curious About Anything Else I Can Try. I Have Been In A Flare For About One Month Now. I Have Four Children And A Full Time Job. This Is Making My Life Unbearable. I Had A Hystorectomy Almost Two Years Ago. I Am Assuming I Didn't Really Need .

[kimmichele]

Two months for me 2 3times a day. It doesn't bother me. I haven't noticed a lot of improvement. I have what feels like urethral pain that is triggered by many foods and stress.
kim

[DONNAW]

What Exactly Do You Do With The Lemon Juice? Doesn't Have Alot Of Acid In It?

[ellienor]

Donna:
give it a try.
I was doing great on it , then slacked off and got flairs.

Take it with food.
Are you on hrt?
you may need some estrogen.
ic can be hormone related too.

I think the protek is helping my joints too.

stay on the ic diet.

[hoping4acure]

Hi

I have been on the Cystoprtek for 14 months now. I went off Elmiron shortly before that. I take 2 caps once a day. I believe it's working...I have been in remission though since June of last year.

[angelgirl]

Ive been on Cystoprotek for about 1 1/2 months now. I have also started taking neurontin 300 mgs daily. I also have received 3 rescue instills. Things have gotten better. I do not have as much pain as before. I am not sure if it is solely due to the cystoprotek but I did start that before I started the neurontin and was feeling better. I believe the hydrocalouric(sp?) acid that is in it helps with joints as well.

I think that it is worth the try and give it a full 4 months. I don't believe there is anything harmful in it and no side effects.

[grace 2]

Helen, What type of aloe gel caps do you use? Grace

[HB]

Grace -
GNC aloe gel caps are my brand of choice to use - their "list of other ingredients" is short (soybean oil, gelatin, glycerin).

I also have a bottle of NOW brand that I'm using up, but it has more "other ingredients " (Rice Bran oil, gelatin, glycerin, beeswax, water and silica) What silica is doing in these is beyond me.
Helen

[grace 2]

Thanks Helen, I'll put that on my list of things to try :)

[mags]

Hi

I have been on the Cystoprtek for 14 months now. I went off Elmiron shortly before that. I take 2 caps once a day. I believe it's working...I have been in remission though since June of last year.

Did you go off the elmiron immediately and take the cystoprotek? i am trying to get off elmiron because of hair loss, but i thought i would take both until the cysto built up in my system.

[Sher E]

Where do you get Cystoprotek?

[peaceplease]

You can order it right here on the ICN or do a web search for Algonot and that is the company that makes it and you can order directly from them...

[DONNAW]

I Can't Say For Sure If The Cystoprotek Is What Did It, But I Was In A Flare For Almost 2 Months. I Started Taking The Pills And I Am Now Feeling Good Once Again. Thank God.

[kimmichele]

I have been on cystoproteck for 3 months now. (3 a day with meals.) I added topomax 3 weeks ago. A few days ago I added saw palmetto. I did not feel any better until I added the topomax, but I will keep taking the cystoproteck to hopefully build the lining. I seem to have gotten off the flaire up cycle. I am some irritatition but it is not so volitile and I have added some foods that were bothering me. I had added sprouted grain bread which I toast in the morning and but a little tahini on. I am not reacting too much to this. I think the flares do damage and though I don't like to take drugs (ie topamax) i think it is important to get control of the flares.
kim

[ellienor]

The cystoprotek and marshmallow tea really can make me feel better.

Get marshmallow tea root, put it in hot water for 2 hours and let it soak.
then strain the tea, trying to get the "gew" out of the root. You will have a sort of "thick" tea then.

Then, mix half of this sort of thick tea with 1/2 cup of warm water.
Add honey and i think it tastes good.
This will coat the bladder.

I drink a cup of this tea first thing in the am, and then i have a good day.
I drink another cup about 3 pm.

[sami4]

I love marshmallow I take the capsules and tea, it works great as a UT soother.
Sammie

[asilva]

CystoProtek really helped me, as well. I took two tablets three times a day since January, and I felt almost normal. Got a bad UTI last week and am now in a flare again. Hoping to get back to normal soon.

[gloriabono68]

csystoprotek and alganot >>?? is that the same thing?

kristi

[LISA41]

hi
Tell me more about marshmellow root . Never heard of it before

[hoping4acure]

Hi. Do a quick search on google it will give a ton of information.

It would sooth my bladder and calm everything down. I liked using it as a tea and putting some honey in it. Again, some IC'rs can't tolerate it. If you are considering it, take it slow and only try a couple of sips at first, and work your way up. MORE is not better, nor will it work faster. With a lot of the natural stuff, you have to take them slowly, and see if it's for you or not.

Good luck and let us know.