What works??

[Selena IC Friend Find all posts View Profile Close Selena]

Hello
I have been on Elmiron for 4 months now and I haven't had much to complain abou except I don't like that my hair is totally unmanageable since taking it and my face has broken out terribly it is to the point though, that I don't feel good about myself.
So I would like to look into natural methods of healing. I don't know where to begin, what is supposed to work? who should I talk to?
Thanks
Selena

[Berkshire Road ICN Member Find all posts View Profile Close Berkshire Road]

Well, right here, on the Alternative Remedies forum, would be the best place to start. Read postings old and new, and see what things seem to be the most popular and the safest. After doing dome research on this site, and then following up on some of the leads I found here, I decided to start Aloe Vera capsules, CystaQ (quercetin blend) and Vitamin D supplements.

I feel better, absolutely, since I've started. But, coincidence is not causation. It's possible that I started a spontaneous remission around the same time I started taking the herbals. To test that, I'm going to have to go off each one, one at a time, and see if that makes things worse.

Please remember that just because something is "natural" does not always mean it's safe; and also keep in mind that each person's body chemisty is unique and will react in its own indivdual manner, over time, to whatever is put in it. Just remember, like any research project it seems overwhelming at first; if you break it down into smaller pieces, it's manageable.




I guess this doesn't sound all that helpful, but I hope I got a couple of points across!

[judyblue IC Friend Find all posts View Profile Close judyblue]

Selena,

Everyone is different and every remedy seems to only help a fraction of the people trying them. For me, I found that the Desert Harvest Aloe Vera Capsules work great. They work like Elmiron (coating the bladder) but have none of the side effects, and the cost for me is less. Desert Harvest has an introductory offer that will start you off with a couple months of capsules. I got most of my relief after 3 months and feel better everyday. I am eating pizza, condiments on my burgers and having an occasional diet coke without pain. My doctor encouraged my use of the aloe vera, said he has seen as much success with it as he has with anything else. It may not be your answer, but it could be worth a shot.

[Katrina ICN Member Find all posts View Profile Close Katrina]

http://icandme.9.forumer.com/index.p...=ST&f=19&t=217 newbie kit
http://icandme.9.forumer.com/index.php?showtopic=4 herbal start with IC
Treating the Gag layer of the bladder has different possibilities. Some alternatives are of things naturally found in the gag layer. Other alternatives in this category create their own layer that helps to coat the bladder and protect it.
• Desert Harvest Aloe Vera
• Licorice Root (Soothing and coating)
• Quercetin (may reduce the effectiveness of some forms of estrogen)
• Glucosamine Sulfate
• Mullein (protecting)
• Slippery Elm (coating, don’t take near Elmiron


I myself found vitamin E and Aloe Vera most helpful in working like a bandaid like Elmiron does.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

What about MSM orally? How does that help?

I am thinking about Aloe Vera, but does it have to be the brand you recommended on the website? I have a pharmacy here that is organic and I bet they don't have any additatives to their Aloe Vera.

I have also heard about glucosamine and chonodroitin supplements (don't ask if the spelling is right). Do you know if those actually help?

Thanks!

[Kathleen Philli IC Friend Find all posts View Profile Close Kathleen Philli]

Aloe Vera info

I have recently started taking aloe vera but before I started I did a bit of research which I will outline here to help anyone interested. First of all, there are many types of aloe products for oral consumption available on the market and the web, and many wonderful properties are advertised. For the purposes of the ic patient you are looking for the long chain polysaccharides, and a certain number of mgs are recommended based on a few loose studies done by the Desert harvest people. It does make sense that these compounds would be the thing in aloe that coats the damaged epithilium and protects it from the caustic substances that occur in our urine. Not all products contain these long chain polysaccharides(LCP's) In fact, a common brand sold in health food stores (Georges) removes them all. It tastes like water, and probably is about as helpful to IC'ers. Any liquid product that is heat pasturized destroys most of what you want. There are a few liquid concentrates that include the rind (whole leaf products) taste pretty bad, but also are preserved with citric acid and therefore can be more harm than help. You can pretty much call up any reputable producer of Aloe and they will tell you the amout of LCP in their product. Most liquids of the whole leaf would require you to drink close to a quart a day to get what you need. Many products are made just from the gel and contain much less LCP and also have citric acid. There are a few companies out there who also make a whole leaf capsule, but the cost per day is about the same as desert Harvest, so I would probably start there. Good luck.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

Kathleen, You seem to know a lot about aloe products. I spoke with an excellent GI doctor about taking it and he said he'd stongly recommend avoiding it. He sees a certain type of colitis associated with oral aloe intake (can't remember the name but it starts with a 'm'). Also, aloe is indicated for a few diseases (as a possible herbal tretment), but nobody said it helps the bladder (government health agencies say that). After talking with with this GI doctor and reading nothing about bladder care and aloe from major sources, I am now hesitant to try aloe products. Do you know of any negative side effects of aloe or anything? I will see research, but I can't say I'm happy with the effects aloe has on the body and GI tract (and neither is this doctor I mentioned).

Thank you!

[Katrina ICN Member Find all posts View Profile Close Katrina]

The thing about Desert harvest is that it has things can be irritating to the bladder taken out so there is less of a chance of it bothering you. Other brands may still help but may cause irritation or diarrhea.
Desert Harvest does have studies backing it up!
http://www.ic-network.com/guestlectu...ranscript.html

(PatDH) We introduced a new concentration after we began working with IC patients. We removed all of the fiber, water, Aloin, and Aloe Emodin (the two chemicals that cause diarrhea) and created a capsule that was extremely concentrated. We apply no heat during the processing (freeze-drying only). Now IC patients are able to get relief with only six capsules per day.

(icnmgrjill) One of the themes of the ICN has always been consumer awareness. As we all know, there are many companies out there trying to sell a variety of alternatives, such as the company currently selling a sugar pill as a treatment for IC which, I think, is outrageous. So, we look to research studies to verify the information. Tell us about your research studies. What have they shown?

(PatDH) Aloe vera is not a cure for IC and it doesn't work for everyone. In our first double-blind, placebo-controlled study of freeze-dried aloe vera in IC patients, 50% of the patients were symptom free after the first 30 days. Another 37.5% of the patients received at least some relief from their symptoms. 12.5% didn't respond at all.

(PatDH)Since then, we have done a retrospective study of our database of 1,700 IC patients and have been able to shown similar results, although we have a small group of patients who take as long as 3 months to respond. If any of these patients stop taking the aloe vera, however, their symptoms do return.

(PatDH) Our next study will be at Stanford University Medical Center, which will set the stage for a multi-center study with 100 IC patients on the East Coast. The only thing holding us back right now is grant funding.

[sami4 ICN Member Find all posts View Profile Close sami4]

Algonot

What about Algonot's Cystoprotek? This product is sold here at the IC store and on Algonots' web site. It has science and some studies done on it. It contains quercetin, oil, chondrotin and glucosamine. There are articles in the Handbook on this site about this product and the inventor of it.
Cystoprotek is excellent for inflammations of any kind and a sister formula which is similar is good for arthritis. It is thought to coat the bladder, reduce inflammation, and Dr. T, the inventor likes it to be taken with Atarax to reduce histamines as well. It can be taken along with Elmiron.
Sammi

[Kathleen Philli IC Friend Find all posts View Profile Close Kathleen Philli]

I was already taking Glucosamine, chondroitin, MSM for joint health before my flare. I have added Quercitin which can be perchased separately, Don't know about olive seed oil, it may increase absorption or something. So far I don't think it has done anything good but it can't hurt so I'll keep taking it for a while. I am wary of trying too many tings at once, because then you don't know what helps and what is a waste of time and money.