Natural Meds Question

[kkothlow]

I was wondering if anyone could give me a run down of what they use that is natural and no RX - I wanted to discuss these with my Uro when i see him, and cannot remember them all.

I have noted Prelief and CystoProtek, but wasn't there something about Aloe or Marshmallow something or other? It's a good thing I wrote these down the first time isn't it?

Thank guys!

[kkothlow]

Oh, and if you have any suggestions of questions I should ask my Uro

[Stella1609]

A lot of people take Desert Harvest Aloe Vera (if I understand correctly, this brand is supposed to remove the laxative properties of the aloe vera so it is better for people who have IBS as well). I've also heard of magnesium, glucosamine, msm, and chondroitin.

[ICNDonna]

Just remamber that "natural" doesn't mean "safe." With prescription medications we have the extra safety of clinical trials to confirm safety and effectiveness.

There are some over-the-counter products that have been put through the test of clinical trials --- you'll find some in the ICN Shop.

And always talk to your doctor first.

Donna

[musiclover]

I'm on Cystoprotek and Desert Harvest Aloe. I told my doctor that I'm taking both so he could put it in my records, because I'm also on 3 RX meds, too. But I LOVE Cystoprotek and Desert Harvest. They have done more for me in a few weeks than the RX meds have done in months! Sometimes I even feel sort of normal, and can actually go for a couple of hours on occasion without having to pee. It's so great. I started Cystoprotek about two months ago and noticed a small improvement after a couple of weeks. Then a month ago I added in the aloe and the improvement started coming even more rapidly. It is definitely hard on the pocket book, but it's so worth it right now to get even a little relief.

[ddktt]

I also drink Marshmallow root tea and take liquid MSM.

Ask your doctor about hormone balance also--although that would be prescription.

Here's to feeling better soon!

P.S. Here is some interesting reading about Elmiron (prescription) from this forum a few years back:

http://www.ic-network.org/forum/showthread.php?t=30263

Here is a Comparison of Cystoprotek vs. Elimron from the Cystoprotek site:

How does Elmiron work on the bladder, compared to CystoProtek?

* Elmiron is a very short (in length) SYNTHETIC (not natural) polysaccharide (multisugar) marketed as able to "replenish" the bladder glycosaminoglycan
(GAG) layer, which is made of very large (100,000 longer) the natural glycosaminoglycans (proteins with sugars attached)
molecules, chondroitin sulfate and sodium hyaluronate.

* Cystoprotek delivers both of these natural components and may permit greater absorption due to the fact that they are mixed in natural olive kernel extract, forming simple "liposomes" that are absorbed intact in our intestine. Otherwise, these molecules would be broken down in the gut. The more intact and the bigger the molecules, the more likely they will be able to cover the bladder lining where it has been damaged. Elmiron is too small and gets washed away.

* IC bladders have different degrees of inflammation. Even if Elmiron were to help, the ongoing inflammation would degrade Elmiron and continue with the painful cycle. CystoProtek delivers the natural anti-oxidant, anti-inflammatory and mast cell inhibiting flavonoids quercetin and rutin in order to address the inflammation. Moreover, these flavonoids are not water soluble and are not absorbed in a powder form sold by other companies. Once they are mixed with olive kernel extract, their absorption may be increased considerably.
* Olive kernel extract has been shown in numerous publications to be cytoprotective and help heal mucosal surfaces, especially in the GI tract.

[KristyKay]

I am a HUGE fan of Cysta-Q. It was recommended to me by my uro and it has done wonders for me. I also take Glucosamine/MSM and I feel great 99% of the time! I take no prescription medication for my IC.

Good Luck on your journey!

[kkothlow]

Does it help with the urgency, or the frequency. I seem to have gotten my flare under control, although I am not sure how yet. I still have the feeling that I need to pee everytime that I walk though.... I am hoping to get used to that feeling soon lol

[KristyKay]

I should say that I have a mild case of IC - I have never had what I would describe as "pain" or nocturia. My biggest symptom that took me to the doctor was frequency during the day. When this first started for me, I was voiding about 12x a day. I feel like the Cysta-Q knocked that out for me (along with following the IC diet which I think is very important - my uro told me that 40% of his patients feel better with diet alone).

I never really felt a great sense of urgency - just the frequency and occasional pressure; So for me, I would have to say it has helped the most with frequency. For some months now, I have been voiding a more normal 6x a day approx. (Give or take).

It's interesting to me that you say you feel like you have to void when you walk around. For me, I feel better moving around and exercising. After sitting all day at work, my pelvic floor feels tight and I have a sense of pressure. I am going to the doctor next week to discuss PFD. I think that might be more of an issue for me than the IC at the moment.

Of course, we are all different....that's just my experience thus far.

[suncaro23]

Questions. Is the Cysta-Q the same as Cystaprotek? Is cystaprotek taken only without elmiron or are some people on both? I also have a uro appt. next week and want to come informed.

[musiclover]

Cysta-Q and Cystoprotek are different. You can find a lot of information on their websites: http://www.cysto-protek.com/ and http://www.farrlabs.com/products/index/keyword/cysta-q.html.

I am taking Cystoprotek and I also take Elmiron.

[lttlewun]

Musiclover ~

Did your doctor say anything the Cystoprotek and the Aloe affecting the Elmiron from "coating" the bladder at all? I'm interested in trying both too, but I'm afraid it will make the Elmiron less effective.

[musiclover]

I was worried about that, too and thought about it long and hard. Some people on these boards said their IC Specialists highly recommended all three (aloe, CP, Elmiron) and I know the famous IC doctor, Dr. Moldwin, highly recommends aloe and I don't think he would if it interfered with Elmiron, the only FDA drug approved for IC. My doc wasn't too versed in aloe, so I had to decide. I am glad I did because after 4 1/2 months on Elmiron I was still suffering a lot and it helped nill. The Cystoprotek and Aloe have already helped in a matter of weeks. I still need a lot more help but they are supposed to take several months to really kick in, so I'm not complaining with the results so far. And I'm still on Elmiron hoping it will some day contribute.

[suncaro23]

Musiclover,
My condolences regarding your grandfather. I hope you are doing well.
Dawn

[lttlewun]

Musiclover ~

Thank you for your reply. Can you please tell me how the Aloe and Cystoprotek has helped you? Should I start taking one first and then adding the other one or is it ok to start both of them at the same time?

I'm assuming these are safe since they are natural products correct?

[musiclover]

Dawn, thank you for your thoughtful message. :)

lttlewun, the Cystoprotek helped in a couple of ways. I was getting a really irritated feeling in my bladder. I didn't even want to move because it would set it off and in turn set off my frequency. Within a couple of weeks, Cystoprotek turned off that irritated feeling. It also began helping with my frequency, which can be off the charts sometimes. Now, I can go a couple of hours without going, but it's not easy so I usually don't wait that long. But before it would have been out of the question to even think about waiting that long.

The aloe, I just started that about a month ago, and I felt like after a couple of weeks that it just inched up the progress a little.

I don't know if I can recommend you take both or not or say for sure that they are safe or not. From my reading, I felt they were safe enough for me to try. I told my doctor I was on them so he could write it in my chart.

[lttlewun]

Musiclover ~

I just read about your father. I'm so sorry for your loss. I know how terrible it feels to lose a loved one :grouphug:

I'm so happy that you have found some relief. I don't have urgency or frequency very often. My main symptoms are burning before and after I urinate which I feel mainly in my uretrha and vaginal pressure/stinging. Do you think Cystoprotek would help with those symptoms?

[kkem]

How does using a pendulum help decide what foods you can eat?? Very curious! Would love to know.

[ddktt]

Here's the thread from this board that talks about using a pendulum:

http://www.ic-network.com/forum/showthread.php?t=57606&highlight=pendulum

I decided what could it hurt to try it so I did. It works for me and I use it all the time.