Interstitial Cystitis Network - Meet the IC Expert Guest Lecture Transcript
Date: May 21, 2002
Topic: Aloe as a treatment for IC
Speaker: Pat Criscito, CEO of Desert Harvest

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We would like to thank our sponsors, Desert Harvest , AKPharma (makers of Prelief), and Farr Laboratories (makers of CystaQ) for underwriting this special event. The ICN Meet the IC Expert Guest Lecture Series currently serves patients and providers throughout the world who are searching for the most up to date information on IC patient care, new research studies and treatment strategies. Our lectures are free to all and usually occur several times a year via the ICN web site. To receive announcements for upcoming events, please sign up for the ICN e-newsletter at: http://www.ic-network.com/newsletters/  

(icnmgrjill) Let me introduce our guest speaker, Pat Criscito, who is the founder and CEO of Desert Harvest. Many of you have heard of this company for the past few years because they have been involved in the IC movement since 1993. Since that time, they have finished some research studies which show that freeze dried aloe vera concentrate can help to improve the symptoms of IC. Pat is joining us tonight to talk about this. Pat, welcome to the ICN!

(PatDH) It's great to be here.

(icnmgrjill) Can you tell us how your company first got interested in IC?

(PatDH) It was accidental! In 1993, an IC patient approached our booth at a health fair. She asked if aloe vera would help her IC. We didn't know a thing about the disease at the time, but we knew it wouldn't hurt her. She took 21 capsules that day and slept through the night for the first time in 10 years. She has been taking the aloe vera ever since.

(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.

(icnmgrjill) What symptoms do you feel aloe is the most effective at treating?? frequency? urgency? pain? pressure?

(PatDH) That's a great question. In the study, frequency and urgency were the first to respond. However, when we surveyed our database of IC patients, pain and pressure responded first in more than half the responding patients. We think the difference might be those patients with Hunner's ulcers as opposed to those with more pelvic pain.

(icnmgrjill) What's the longest that a patient has been on aloe? Is it a short term.. or long term therapy?

(PatDH) Another great question! Our oldest client is our first, which means she has been taking our aloe vera capsules since 1993, nine years. She doesn't have to take as many now as she did in the beginning, and we find that is true with most of the IC patients. We recommend six capsules per day, 3 in the morning and 3 in the evening with a full 8-ounce glass of liquid. Many of our customers find maintainenance doses of about 3 to 4 capsules per day. There is a group of patients, however, who are never able to drop below six and some how require even more, especially in the beginning.

(PatDH) Once a person experiences relief with our capsules, if they miss a couple of doses, their symptoms will usually return rather quickly. However, it doesn't take another 30 or 60 days for symptoms to get back under control. We are assuming that the aloe vera is doing what it does with a sunburn on the skin. It reduces inflammation, speeds healing, and reduces pain. It also contains a good deal of mucopolysaccharide, which mimics the polysaccharide layer in the bladder. It has been shown to improve immune function in tests with AIDS patients, so it might also have some modulating effect on the immune system.

(icnmgrjill) Question from Kim.. "Do patients get stomach upset from aloe?? If so, what should they do about it?"

(PatDH) When you look up aloe vera in an herbal remedy book, they will show that it is toxic to the gut. That's because it was only in the last 10 years that we had a patented process to remove the aloin and aloe emodin, the two irritating chemicals in the aloe plant.

(PatDH) With those two chemicals completely removed, along with the water and excess fiber, there are still more than 200 ingredients left in our product. The majority of those ingredients are nutritional, but there are some that aren't even identifiable on a spectrometry analysis.

(PatDH) It is possible that some of those ingredients could cause stomach upset, but we very rarely get that complaint. When we do, we recommend that you remove the powder from the capsule and try to get it down. Fair warning. It tastes awful! The capsule itself is made from a natural vegetable gelatin that a few people don't tolerate. That will often cure the problem.

(PatDH) Let me emphasize that IC patients should never take liquid aloe vera. There are only two ways to preserve aloe vera juice, one is with heat (which destroys the active ingredients and caramelizes the polysaccharides) and the other is with citric acid, which many IC patients don't tolerate.

(PatDH) You can take an aloe plant, grind up the whole leaf in a blender, add preservatives, and sell it on any health food shelf. However, you will be getting 99.5% water and excess fiber, plus the two irritating chemicals. In order to make the aloe vera of benefit to IC patients, it must be extremely concentrated, which is what we do when we freeze-dry it.

(PatDH) We also use the whole leaf and not just the inside gel. Many companies who use the jelly inside the leaf do so because they don't have the patented process to remove the aloin and aloe emodin, which are concentrated up against the rind. The whole leaf with all of its synergistic elements, we feel, provides the most benefits.

(icnmgrjill) HaveHope asks "Is it safe to take with the other IC treatments, such as Elmiron? Also does it conflict with alternative products?"

(PatDH) Another great question! We have not experienced any conflicts between aloe vera, Elmiron, other drugs, nutritional products, or other herbs. We were concerned when we first began using this concentration of aloe vera because aloe has been proven to enhance the absorption of nutrients from food and it also carries other products with it through seven layers of the skin when used topically. Because of that, we conducted several tests with patients who were taking drugs whose effects were easily measured in lab tests. For instance, in patients taking Coumadin, we had them check their blood clotting tests every week for six weeks. There was no interaction between Coumadin and aloe. We have done the same with many patients taking Elmiron, and there was no change in its absorption. However, we can show increases in certain nutrients in the bloodstream when a person takes concentrated aloe vera along with natural food supplements.

(icnmgrjill) One user in the room (whose name I will not use) asks about diarrhea. She says that she's taken aloe caps for the past week and has developed it. She's not sure if she should stop or reduce the dose. Have you seen this before and any suggestions for her?

(PatDH) While I talk about this, would the user please whisper to Jill about the brand she is taking. We don't get that report with our product unless a person is allergic to aloe vera. Signs of an aloe allergy include diarrhea, nausea, vomiting, hives, and ultimately trouble breathing.

(PatDH) If you are extremely allergic, you might want to test the aloe vera by breaking open a capsule, wetting a bit with a drop of water, and placing the paste on the inside of your elbow before going to bed. If you wake up with a red rash in the morning, then you should never take aloe product internally.

(PatDH) The user did tell Jill she is using our Desert Harvest freeze-dried aloe vera capsules. Please call our customer service department between 7am and 7pm tomorrow (800-222-3901) and they can make some recommendations for titrating your dose from two capsules per day. That might make the diarrhea disappear, but I would encourage you to do the allergy test tonight anyway.

(PatDH) Remember, not everyone can tolerate every food, herb, or drug. One percent of the population can be allergic or sensitive to any product. Desert Harvest aloe vera is no different.

(icnmgrjill) Don asks a very important question about Hunner's Ulcers. Can aloe be used to soothe those ulcers and perhaps settle the bladder down abit. I know that this is a difficult question for Pat because Hunners Ulcers can be hard to treat. But, let's see what she has to say.

(PatDH) Without doing invasive tests on our study subjects, which we haven't been willing to do yet, it is difficult to answer this question. We don't have any scientific evidence of how aloe vera is affecting Hunners ulcers. There are been many published studies of aloe vera in the treatment of radiation burns over the past 50 years.

(PatDH) Everyone who has broken open an aloe leaf and rubbed the gel on a sunburn knows how it works. We do know that some of the aloe is not broken down completely in the digestive process and in the kidneys. That means that some of the synergy of the whole plant is reaching the bladder through the urine. We can only hope that it is either providing a temporary barrier (like Elmiron) or that the healing properties of the plant are actually working on the bladder wall.

(PatDH) Until we are willing to do the invasive tests during some of our research studies, we won't have a definitive answer.

(icnmgrjill) Do you plan to have aloe FDA approved as a treatment for IC?

(PatDH) The FDA has reviewed our literature and our studies. Because aloe vera cannot be patented (you can't patent something made by God and not man) it isn't financially feasible for a company to spend millions of dollars in FDA studies to get approval and then have every pharmaceutical company in the world manufacture their own and build off those studies. Drug companies make back their research money in the years their products are protected by patents.

(PatDH) Since we believe the synergy of the whole aloe plant is important to its healing effects, we refuse to remove a single ingredient from the plant and patent it as a drug. At some point, we do hope to become a recognized treatment for IC so insurance companies can cover your expenses, but that is many studies away. Just as air filters are not drugs but are recognized treatments for allergies and covered by many insurance companies, we hope to someday be able to provide that benefit to IC patients without being labeled as a "drug."

(icnmgrjill) What reception are you getting from MD's about your product?

(PatDH) It has taken years and years to get respect from health care professionals, but we have been successful in the past five years in being recognized by many mainstream urology practices as a treatment for IC. We get calls every day from doctors all over the world for professional samples and information packages for their patients, and we are happy to comply. We mailed the first study results to every urologist in the country in 1998.

(icnmgrjill) How much is the aloe?? Do you have free samples??

(PatDH) A one-month supply (180 capsules, 6 capsules per day) is $62. We sell a smaller bottle (90 capsules), but that is more for patients who have established a maintenance dose of three or so capsules per day. We offer volume discounts that start at 4 bottles per order (20% off), and twice a year we offer specials of 10% that can be combined with our volume discounts.

(PatDH) You need to keep in mind that this is a very special concentration of aloe vera that is made especially for IC patients. It takes a huge plant and entire harvest season to make one 180-cap bottle.

(PatDH) Regarding free samples, we do have professional samples that we send to health care professionals (12 caps per bottle). We are happy to send those to patients, too, with an information package, but you shouldn't expect to receive relief in only two days. It is usually better to order the full 180-cap bottle with an info pack and take advantage of our money-back guarantee if you end up not being able to take the caps because you are allergic. You can order from our website at http://www.desertharvest.com/ or by calling 800-222-3901.

(icnmgrjill) Where do the plants come from and why does it take such a high dose?

(PatDH) We grow our aloe in organic fields in Florida, Texas, California, and Arizona. We have made this special concentration that allows IC patients to take only 6 capsules a day when our earlier concentration (in the early 1990s) required a patient to take 21 capsules to get the same amount of active ingredients. We used to leave in more the fiber to make the capsules less expensive, but IC patients seemed to need those higher concentrations to experience relief. Remember, however, that many IC patients can reduce their dose after they experience relief. You can't fight a forest fire with a garden hose!

(icnmgrjill) Do you use aloe as a bladder instillation?? Do you have plans to create a bladder instillation? ICN users may remember Dr. Susan McSherry of the Louisiana Clinic, who appeared in this lecture series two years ago, created her own aloe instillation that she uses after doing other types of bladder procedures to help soothe the bladder.

(PatDH) There is a problem with instilling aloe into the bladder. The bladder is a sterile environment. To make aloe vera juice sterile, you must pasteurize it. Applying heat caramelizes the active ingredient that we assume is helping IC patients the most. Some of the elements are not affected, which is why instilling pasteurized aloe vera juice into the bladder might have helped some people. However, we haven't conducted any studies along that vein.

(icnmgrjill) Does your company sell any other products that are IC friendly??

(PatDH) Our primary product is our Desert Harvest brand of aloe vera. However, our catalog does contain some nutritional supplements that we make sure are IC friendly, including omega-3 oil, DHA, ProDetox, and a whole range of bath and skin products. You can find all of our products on our website at www.desertharvest.com

(icnmgrjill) Thanks Pat. Great lecture and we very much appreciate the information and, in particular, companies that truly take an interest in helping IC patients.

Related Websites:
Desert Harvest - http://www.desertharvest.com

Desert Harvest Contact Information:
1140 Amstel Drive
Colorado Springs, Colorado 80907
Toll Free: 800-222-3901
Fax: 719-598-8918
E-mail: support@desertharvest.com

Books & Resources That You can Purchase:
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $13.00/$11.00 for ICN Subscribers

The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. Only your personal provider can and should give you medical advice.

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