Date: March 28, 2000
Interstitial Cystitis Network - Chat Log (www.ic-network.com)
Topic: Understanding DMSO
Speaker: Dr. Stanley Jacob, Oregon Health Sciences University, School of Medicine (503-494-8474)
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<icnmgrjill>Greetings everyone and welcome to the ICN support chat for March 28, 2000. Our guest speaker tonight is Dr. Stanley Jacob, the father of the DMSO movement in the USA. He's very happy to be here tonight, to answer your questions and to talk more about DMSO. As always, let me remind everyone of our disclaimer. Nothing that you read on-line, in a message board or in this chat room, should be considered personal medical advice. Always discuss your medical care with your personal physician. Only that person can and should give you medical advice.
<icnmgrjill>Dr. Jacob has served as a Professor in the Department of Surgery, Oregon Health Sciences University Medical School since 1981. Shortly after graduating from medical school, he served in the US Army at Walter Reed Army Medical Center before retiring and resuming a distinguished medical career. He has taught at both Harvard Medical School and, for the past three decades, the University of Oregon. In 1983, he was named Humanitarian of the Year Award by National Health Federation. He is considered one of the foremost authorities on the use of DMSO in IC, participated in the research studies which lead to the FDA approval of DMSO for IC and, more recently, developed DMSO2 (MSM). Welcome Dr. Jacob!
<drjacob>Thank you. I feel privileged to be here this evening. I've learned something from talking with Jill over the last few minutes AND I hope that I can satisfactorily answer the questions for everyone in the chat room.
<icnmgrjill>Dr. Jacob please tell us how you got involved with IC initially.
<drjacob>I came to work at the University of Oregon Medical School in 1959 as Chief of the Transplantation group because I had been a part of the first human kidney transplant in the world which was done at Harvard by my teacher, Dr. Joseph Murray. Dr. Murray was subsequently given the Nobel Prize for his work in transplantation. I chose to work with the preservation of kidneys for transplant.We wanted to be able to freeze a kidney for long term preservation. Unfortunately, when you freeze a structure the size of a kidney, the tissues expand and that leads to damage. I subsequently became interested in DMSO for use in preserving organs and for it's therapeutic effects.
<icnmgrjill>Let me just remind everyone that one of the more common current uses of DMSO is in the storage of human organs for transplant.
<drjacob>DMSO was initially used to preserve blood cells We were the first ones to attempt to use it. We subsequently learned that DMSO was helpful in the preservation process and helped to solve many of the problems that we experienced in our earlier studies.
<icnmgrjill>When did you first use DMSO in a bladder?
<drjacob>This is interesting because the first patient ever treated in the world with DMSO was an an interstitial cystitis patient back in 1962. Her name was Elsie Klugg! Initially, I used a combination of DMSO, Sodium Bicarbonate, Heparin and Cortisone and instilled it into the bladder. This was called a DMSO cocktail. I used only a 15% concentration of DMSO back then because I didn't really know how to use it. Nobody had ever used DMSO to treat IC before.
<icnmgrjill>How did she respond to that first treatment?
<drjacob>She improved and I thought to myself, why do I need Heparin and Sodium Bicarbonate and other substances in addition to the DMSO. Maybe just DMSO is all we need and so I began to work with DMSO alone. I raised the concentration (now 50%) and found that the so-called cocktail was no better than DMSO alone.
<icnmgrjill>What do you think DMSO is doing in the bladder? What effect does it have?
<drjacob>It reduces pain. It relieves inflammation. It's a potent "free radical scavenger" or, in lay terms, antioxidants. It improves blood supply and actually aids healing. There at least one hundred pharmacologic actions of DMSO. I think probably no substance in biology or medicine has more pharmacologic action than DMSO with a possible exception of aspirin.
<icnmgrjill>We often hear about patients who have tried DMSO and who experienced pain while holding the solution in their bladder. Based on your experience, how often should a patient hold the DMSO and what recommendations do you have for reducing that pain?
<drjacob>Currently, and over the last several years, we're using a combination of RIMSO-50 and MSM (DMSO2) which we instill directly into the bladder. But also, we believe that IC is a systemic disorder and almost every patient I've seen and I've seen probably as many as anyone. Almost every patient has a musculoskeletal problem, a gi problem, and/or has depression. One of the difficulties is that when the urologists treat IC, the urologist's focus on the urinary bladder, which is understandable. But, we don't feel that that's the right way to treat it. We use DMSO by IV, orally, topically (on the urethra) as well as intravesically into the bladder and we have had no problems with burning. Our patients are instructed to hold the solution in their bladder for as long as is comfortable, usually no more than 15 to 20 minutes. I think that we're getting 90% of our IC patients to improve. We see IC patients from all over the world because we are using multiple routes of administration.
<icnmgrjill>Have you seen any dangers of using RIMSO-50 or MSM?
<drjacob>We haven't seen anyone who has had any serious side effects as to DMSO. Nothing serious. Now, an occasional patient may have an allergic reaction to anything.. to DMSO.. to lobster.. to anything. But, that patient is incorrect. DMSO is a viable option for any IC patient to explore.
<icnmgrjill>Do you have any concerns about women using DMSO if they are considering pregnancy?
<drjacob>I don't recommend that pregnant women use DMSO in any way. But I will say that that I've had hundreds of patients call me who were worried about whether DMSO would impact a pregnancy because they had become unexpectedly pregnant while going through a series of DMSO treatments. I've always asked them to call me back after their child is born and, in all of this time, none has reported that their pregnancy was negatively affected. If you've accidentally taken DMSO while pregnant, it may be comforting to know that we haven't seen any abnormalities from the DMSO.
<icnmgrjill>The next question is from Ken. He says "One of the criticisms of DMSO is that, as a tissue penetrator. Some DMSO critics say that it can carry bacteria deeper into the bladder tissues. Do you agree?"
<drjacob>That is not true. You see, DMSO will not carry anything with a molecular weight of over 1000. Now, the molecular weight of a virus is one million. A bacteria has a molecular weight in the millions. It won't carry a virus or a bacterium. That's nonsense.
<icnmgrjill>Do you have any comments on MSM that is available "over the counter" through pharmacies?
<drjacob>MSM is a derivative of DMSO, is a nutritional supplement so it can be sold without a prescription. I invented MSM in 1978.
<icnmgrjill>I didn't know that! Tell us about that?
<drjacob>Well, you see, the major end product of DMSO is DMSO2, which has an extra oxygen.. which is also MSM. MSM is an interesting substance. It's not as good as DMSO for pain or inflammation or to increase the blood supply. But, it is a viable substance.
<icnmgrjill>I'm glad that you brought this up. I, personally, tend to be very careful about over the counter supplements and just didn't know what to make of MSM.
<drjacob>There are 55,000 articles on DMSO. There are only 25 articles on MSM. There's a major difference in a number of studies. But, we have found that the combination of DMSO and MSM is excellent. We use this for IC patients very effectively. It has helped to save some bladders that may have been removed years earlier.
<icnmgrjill>Terri has a great question. When she had DMSO, she had that strong odor and she was wondering if everyone had that happen?
<drjacob>There's no doubt that DMSO has an odor and most everyone will experience that odor. But with our new technique of treating IC, we've had no problems with odor.
<icnmgrjill>What advice would you give to patient who is working with a urologist who just doesn't seem to know the latest research or parameters for using DMSO.
<drjacob>Let me say this. I don't think that there are more than a dozen people in the US who know how to use DMSO for IC and that's sad to me because we see the worst IC patients. If one understands the reagents and the disease, we can get 90% of our patients to benefit. That's pretty high.
<icnmgrjill>How do they improve? Does their frequency? urgency? pain?
<drjacob>Frequency, nocturia, dysuria and pain. Their ability to have sex with their partner. The other aspect is that because IC has systemic implications, we see an improvement in gi, musculoskeletal and depression. It's a tough disease to treat and their aren't too many people who really understand the disease.
If you're looking for resources, you can call our office. We have a packet of information that we would be pleased to send to anyone who calls. There's no charge for that. You can call 503-494-8474. This includes about ten pertinent reprints that we send to IC patients. I've also told my nurses that any time an IC patient calls, I want to talk to that patient and answer any questions that he or she has and I always find time to take any questions from IC patients.
<icnmgrjill>Are you treating more men these days? There's been a growing movement that researchers believe that many misdiagnosed prostatitis patients are actually IC patients. Are you seeing a corresponding increase in referrals.
<drjacob>Yes we are.
<icnmgrjill>Suzanne asks "Please ask Dr. Jacob whether he is working with the FDA for approval of his other routes of administration so that they can be used outside the state of Oregon. Patients must understand that Dr. Jacob's treatments can only be used in Oregon right now."
<drjacob>Once a drug is approved for any indication, a doctor can use that drug he or she elects. One of the fact sheets that we send out is from the FDA says that the agent can be used for anything the physician elects to use it for. So, in my opinion, that's not true Suzanne.
<icnmgrjill>Do you know of any other physicians outside of Oregon who are using your specific treatment protocol?
<drjacob>Noone else in the world is using my treatment for IC but nobody else in the world is getting a 90% benefit rate. We're getting the best results on earth.
<icnmgrjill>The next question is from AJ. She wants to know the average age of the patients that your treating. Are they post menopausal? Premenopausal? What age trends are you seeing?
<drjacob>I would say that the average age is 40-60. Probably a better word would be "usual." I've seen IC patients in their teens. But, for the most part, they seem to be older rather than younger.
<icnmgrjill>Are you optimistic about the future of IC? Do you feel that we're coming close to solving the IC mystery? And, do you have a personal opinion on what you think might be causing IC?
<drjacob>I don't know what causes IC but I see light at the end of the tunnel. I feel more optimistic today than I did, say, forty years ago.
<icnmgrjill>Here's a controversial question. Do you feel that IC has any psychiatric origins?
<drjacob>No, but I do think that stress can play a role in IC and that, often, a patient's stress is not taken into consideration. There's no question that stress management is important. I think that you should treat the stress at the same time you treat what's going on in the bladder.
<icnmgrjill>Dr. Jacob.. do you have any last words of encouragement for IC patients? Anything left unsaid?
<drjacob>I think we're learning more and more about IC. But I think, unfortunately, the average urologist does not understand this disease. And that saddens me because it is a systemic disorder. It's not just a bladder disease. Any time someone wants to telephone, I will answer their questions personally and I've told my nurses to put them right through. I think there is hope. We are learning more about IC every day and that helps us to offer better treatments. I don't know the answers to all of your questions and I'm sorry about that. But I do think we're making progress.
<icnmgrjill>Are you publishing your data? If so, where?
<drjacob>The last article I published was with Dr. Stacy Childs. It was in the Urologic Clinics of North America two years ago. I also spoke at the national ICA meeting about three years ago. I spoke on behalf of the ICA at Cornell.
Related Websites of Interest:
ICN Research Library - DMSO Studies
Dr. Stanley Jacob, the Father of DMSO
What is DMSO?
DMSO: Many Uses, Many Controversies by Maya Muir
The Pharmacology of DMSO
Dimethyl Sulfoxide in Treatment of Inflammatory Genitourinary Disorders
An Interview With Dr. Stanley Jacob: Discussing DMSO
A free packet of information on DMSO is available through Dr. Jacob's office. This can be obtained by calling: (503)494-8474.
Please review the ICN Disclaimer: Active and informed IC patients understand implicitly that no patient, or web site or presentation on a web site should be considered medical advice in all cases, we strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. A copy of our more extensive disclaimer can be found at: www.ic-network.com/disclaimer.html
© 2000, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Dr. Stanley Jacob and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.