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)
We
would like to thank our sponsor, AKPharma
(makers of Prelief), for helping to make this, and other ICN chat events,
possible during the year 2000. Our corporate sponsors help us to maintain
the largest free archive of IC information in the world, now accessed by patients
and providers in 69 countries.
<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
www.dmso.org
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.