<icnmgrjill> Greetings everyone and welcome to the ICN Chat for January 5, 1999, our first chat of the New Year! We are pleased to have a special guest tonight, Dr. Tony Buffington. I am now switching the room over to moderation which means that, until his presentation is done, only he and I will be talking in the room. You can, however, whisper to each other. If you have questions which you would like Dr. Buffington to answer, please whisper them to Julie or myself and we'll put you in the queue.

<icnjill> Tonight, we welcome Dr. Tony Buffington as our speaker. He is a professor of clinical nutrition with Ohio State University Veterinary Hospital. Dr. Buffington has been working with the feline model of interstitial cystitis for years. He has collaborated and/or published his research results in a variety of medical journals. He has received roughly half a dozen research grants to study Interstitial Cystitis and just recently had his research project renewed by the NIDDK. Welcome Tony.

<Tony> Thanks for inviting me; it's nice to be here!

<icnjill> We're so excited to have you visit the ICN because we share two interests, #1 interstitial cystitis in cats and how those studies can help us understand our disease and #2 your interest in nutrition. So, let's talk first about your feline studies. How did you first get started studying IC in cats?

<Tony> We were studying a similar syndrome called Feline Urologic Syndrome in graduate school at UC Davis which was thought to be a nutrition problem (which is why I have a PhD in Nutrition). But we learned that it wasn't caused by the diet, which led us to learn about IC.

<icnjill> So, the first question that people have is "Is it normal for cats to have diseases that are similar to human diseases or is it relatively unusual to find such a clost match between diseases and species?"

<Tony> That's a good question! Cats have many diseases similar to humans but they also have some that people do not, and some that people do.

<icnjill> So, for bladder problems, you've found a population of cats who have IC? Right?

<Tony> We find that cats get utis, cancer, stones, and IC but about 70% of cats with a bladder disease have IC, including my own pet cat!

<icnjill> Wow, so let's go over some of the things which are similar when you diagnose a cat with IC. Do you follow the same procedures used to diagnose humans?

<Tony> Yes, we do. We rule out utis (which are rare in cats), urinary tract stones, and they examine the bladder with a cystoscope. According to the NIDDK criteria, cats meet all the inclusion and exclusion criteria that can be applied to animals....

<icnjill> So, it's fair to say that, just like in humans, you usually don't find bacteria in their urine cultures?

<Tony> That's exactly right, and we've cultured the urine and the bladder wall...

<icnjill> Do they have petechial hemorrhages or Hunners Ulcers?

<Tony> Yes, in fact when I lecture to urologists, I show a cysto slide of these lesions and ask them to tell me if the picture is from a human or a cat bladder. They can't tell the difference.

<icnjill> What about mast cells? We talk alot about mast cell activity in some IC patients, particularly those who are more ill. Are you seeing degranulation.. increased mast cell/histamine activity, etc. etc.

<Tony> We haven't looked at that in great detail but based on T Blue staining (a histochemical technique) we find increased numbers in some but not all patients..

<icnjill> How about symptoms in cats? Human Icers usually flare and then go into remission at times, do you also see that in cats?

<Tony> Yes that's exactly what we see. Cats are brought in for frequency, pain urinating outside the litter box/urgency. The signs are apparent for 1-2 weeks, then subside below the clinical threshold. One has to remember that cats are a very stoic species, so I think we only see the worst of the flare. When we scope cats without obvious signs we still see glomerulations and if we stress them, signs often reappear. We stress them by taking their food away in the afternoon then the next morning we take them out of their cages take a small blood sample and put them into a clean cage. Just that minor intervention is enough to cause observable changes in cats with IC, but not healthy cats!

<icnjill> So, it would be somewhat safe to say that stress can play a substantial role in IC in cats, and also possibly, humans?

<Tony> That has certainly been my experience. Moreover, veterinarians the world over report similar observations after earthquakes, weather changes, moving to a new home, introduction or loss of a family human or pet, etcetera.

<icnjill> One of the things that you can help us to understand is how neuroanatomy (the structure of nerves and the nervous system) can play a role in IC. Of the many proposed causes and treatments for IC, neurological dysfunction continues to be discussed and could account for the many other symptoms or related conditions that some of us experience, such as Fibro, Sjogrens, etc. So, based upon your studies, can you give us a lesson in the neuroanatomy that you are finding in felines and how it relates to IC?

<Tony> Thats a big question! Let me try to break it down. One of the questions that points to the involvement of the nervous system is if stress makes signs worse, how does stress in the environment communicate with the bladder if it doesn't use the nervous system? (I don't know)

<Tony> So we (and others) looked at the nerves from the bladder to the spinal cord and found increased activity of transmitters (Substance P) in the bladder wall and in the spinal cord. Then we looked in the brain where the nerves from the bladder connect to the brainstem and found increased activity of the enzyme that makes catecholamines (norepi). We then looked at the nerves (sympathetic) that leave the brain and return to the bladder and found increased transmitter in them as well.

<Tony> I think that the increased transmitter may cause its receptor to become desensitized which can result in a loss of its ability to control bladder function.

<icnjill> So, it's fair to say that because you've found increased levels of substance P in the bladder, as well as other things, that we're coming to understand why the bladder has become so sensitized or perhaps not functioning as well.

<Tony> That's right. What we've found really is abnormalities at many levels of the nervous system related to the bladder. What we don't know yet is which is the cause and which is the effect of the problem. The results we found in the brain, while preliminary (J Urology March1998), support the idea that IC is more than a local problem.

<icnjill> ::grins:: Which is what many patients have thought for some time, given our experience with some of the related conditions to IC that effect other parts of our bodies, such as sjogrens syndrome. Patients and doctors understand that there may indeed be more here than meets the eye. Let's take a few questions from the floor.

<icnjill> NYLDYL (Julie) has the first question. She wants to know if cats demonstrate their pain by licking their abdominal or perineal region? And does this relate to nerve pain or IC pain, or are they one in the same?

<Tony> Yes they do! In fact, some cats lick most of the hair off of that region, but the underlying skin looks pretty normal.. I think (based on rat studies in the literature) and the neuroanatomy of the cat that this is a manifestation of referred pain. This mean that pain signals coming from the bladder enter the spinal cord in the same region as nerves from the perineum. Although these nerves are called afferent nerves (carrying signals from the periphery to the spinal cord), the same nerves can carry signals from the cord to the periphery...

<icnjill> Let's move onto treatments? Have you been able to test the effectiveness of some standard IC treatments, such as Elavil?

<Tony> Yes, we published on that in the veterinary journal in November! I want to emphasize that I think that this is a treatment of last resort for cats because it has some worrisome side effects in them. Also we try to approach therapy in a stepwise strategy, meaning we try to intervene as early as we can (before other neurological problems can develop) by reducing stress in the environment and giving the cat a sense of control over its surroundings.

<icnjill> Have you been able to test any bladder coatings like Elmiron??

<Tony> We currently are studying a GAG therapy in a blinded controlled study (as important in cats as in people!!) and should have results in about 6 more months.

<icnjill> CarolL wants to know if you have done or studied bladder augmentation in cats and whether you've also seen a reoccurrence of IC inflammation in the new segments?

<Tony> No, we haven't done badder augmentation in cats (yet)

<icnjill> Darla wants to know if female cats get IC more often than male cats?

<Tony> We don't think so, both genders seem to be effected, whether intact or neutered.

<icnjill> Dianne wants to know if you have observed IC to be progressive in cats?

<Tony> That's a good question, that I don't know the answer to! By the time we see these cats, they usually have had the disease for some time, and don't seem to progress but we haven't studied this carefully enough

<icnjill> I would like to know if you ever make a diagnosis of IC in cats, without the presence of petechial hemorrhages?

<Tony> No, because cats also urinate in innapropriate places for behavioral reasons (called spraying). In a previous study. we had 24 cats with only this sign before cystoscopy. After cystoscopy, 16 of the 24 were found to have glomerulations. So if we have only irritative voiding without cystoscopy, we call it "idiopathic cystitis" wherein the patient is pathetic and the clinician feels like an idiot.

<icnjill> Have you seen IC or IC like symptoms in any other species?

<Tony> Yes, although it is quite rare in other species. We've seen similar problems in dogs, llamas and pot-bellied pigs!

<icnjill> Okay, here's a question with an unusual twist. Ken and joy want to know if there is any danger of having a healthy cat in a home with an IC owner? We're a cat friendly web site and our mascot is Mulder, the Tabby, who currently owns NancyK, in New York!

<Tony> Thats a great question! If the presence of IC creates stress in the household AND if the cat is one of the ~0.6% of cats that are susceptible to the disease then the cat might well begin to show signs...

If the cat is truly healthy and normal and the person enjoys its company, its been shown that the presence of pets reduces stress, which I think would be therapeutic for the person with IC. But there is no evidence that people can "give" IC to cats or viceversa...

<icnjill>Julie wants to know if you have found any other related conditions in cats that we also see in the human population of icers, such as dry eyes, dry skin, fibro, ovarian cysts, endometriosis, etc. etc.

<Tony> We've found signs of "irritable gut" in cats with IC. Most are neutered so we haven't observed reproductive sytem problems, but they certainly could be present and we wouldn't know it!

<icnjill> I'd like to switch gears for the next few minutes and discuss alternative therapies. One of Tony's interests is in the education of medical care providers and patients on the safe evaluation and review of alternative and complementary therapies, such as supplements for IC, herbal strategies, etc. etc. Many of you know that this has been the subject of considerable debate online among Icers.

<icnjill>Tony, it's always great to get a neutral professional opinion on this and you have a wonderful paper on your website which discusses how we can review alternatives. How did you get involved in this?

<Tony> My interest is based on my profession. Nutrition is somewhat unique in medicine because of its social and psychological dimensions. I respect these discussions in healthy people, but when they inhibit one from looking at the evidence in a neutral way, then beliefs can become unhelpful and make people susceptible to quackery.

<icnjill> We have several fads that sweep through many online health communities about once a year and sadly, some people don't know how to verify anecdotal information received from another patient. Newly diagnosed, despite their own better judgement at times, they may just try something without researching it because they are desperate to get better. We saw this last year when someone suggested drinking the juice of a lemon a day with the claim that it would cure IC. You talk about quackery, can you tell us what that is?

<Tony> Yes, its the provision of treatments that are untested or don't work. In nutrition, it's estimated to be a 23 BILLION dollar business. There is a good web site on this at http://www.quackwatch.com

I was taught to be wary of "experts" who say:

1. that diet causes disease (although it is true that all patients were eating when they became ill)
2. that processed foods are "poison"
3. that natural vitamins and minerals are better than synthetic ones (without evidence in a relevant population)
4. that they or their products can produce miracles
5. that they are victims of a conspiracy
6. that they offer only testimonials (which are by definition positive) to support their claims
7. and finally, that they have something to sell (usually at a high price!)

<icnjill> Essentially, what you're reminding us all is that there can often be a hidden agenda in those who promote some types of alternative therapies, such as money.

<Tony> Yup! The antidote to all this is some advice that is 4000 years old; don't accept it, don't reject it, check it out! And in medicine, the way to check it out is evidence-based medicine. This means asking the question, in my patient population, what is the evidence that this treatment is safe and if it is safe, what is the evidence that it is effective?

<icnjill> We had a company try to market magnets to ic patients about six months ago. When I asked them what research they had to support their claims (it was a japanese company), they said they had done research in Japan but they didn't want to release study results here in the USA. That was a big giant warning sign.

<Tony> I would have offered to help them conduct a study here!

<icnjill> One of the issues that we have is when a well meaning patient offers anecdotal information (i.e. I tried this alternative strategy and it worked for me). In essence, they then recommend it to other patients without having any research to back it up. How can we, as patients, evaluate the information we receive on the web and internet about alternative strategies from other people. Clearly, one persons experience, while valid for that person, is not necessarily valid for the great majority of individuals.

<Tony> I actually think that this type of "chat" patient communication is a healthy start because people may come to realize that everything works at some time, some where, but that doesn't mean that it'll work for them! There are many possible causes of the signs of IC. So, just as many different kinds of microbes cause infection, if we just tried antibiotics randomly they would work occasionally, and fail often. We would be much more likely to hear about the successes than the failures (just think about your state's lottery). Just because something works once, doesn't mean it works well.

<icnjill> In your article, you talk about safety and efficacy and you encourage people to gather information from published evidence about a products safety. Can you explain that just a bit more?

<Tony> Yes, patients have enough problems with IC without compounding them with unsafe attempts at treatment. The desire for help is clearly understandable but one of the reasons I got involved in IC was that I saw many diet recommendations that seemed risky to me. It's only by using the results of controlled trials that we can separate what we know from what we think we know. With regard to information on the web, it's hard to know if the person providing it understands the potential ramifications of their advice for others. I wonder how many of these "advisors" would be willing to accept the responsibility for adverse outcomes that doctors do on a daily basis?

<icnjill>One last thing. You mention in this article a rating system that is used to assess alternative strategies and I'd like to go through this with you. On a grading scale of A-F, an F score would be information that comes from a manufacturer, or magazine ads, or anyone else??

<Tony> biased testimonials, the kinds of things that are not backed up by anything more than the force of personality.

<icnjill> A D score is an unbiased testimonial. So, would that be someone who openly weighs both the pros and cons of their recommendation?? Do I have that right??

<Tony> Yes an unbiased testimonial is also one for which the testifier has nothing to gain by their testimony. It's still only an "n of one" (a sampling of one person), and positive testimonials seem more common than negative ones.

<icnjill> A C- score is the opinion of an experienced agent. Who is an experienced agent as we think about the many alternative strategies that are discussed online by a variety of individuals?

<Tony> That would be me. A professional with training and experience. Just like testimonials, though, we tend to remember our successes and forget our failures. That's been studied!

<icnjill> A C score for reliability is a non-experimental study which supports the treatment discussed. A B- score is any other type of well designed research study which supports the conclusions of the individual offering the information. A B score is a well designed study without randomization? Can you explain what that is??

<Tony> This may be getting close to too technical for some people, but randomization basically means that each patient has an equal chance of being in the treatment or control group.

<icnjill> An A- or A score is given when the evidence of the claim comes from at least one, if not more, randomized controlled trials. So, as patients, this tells us what?

<Tony> This scoring system, which comes from the Centre for Evidence based medicine at Oxford University (great web site!), helps us apply the appropriate number of grains of salt with which we take advice. By that I mean advice that get a failing grade fails. As the quality of the evidence increases, our confidence in it increases as well IF we are in a comparable patient group!!

<icnjill> It is so tempting for us to believe everything we see because we can be so desperate. It's important that we remember to be good, solid information consumers and do the work of verifying that information before we jump into anything head first.

<Tony> Its not easy but its certainly safer than not doing it!

<icnjill> Tony, we so appreciate your time tonight. You've helped us and enlightened us to many of the fascinating research avenues being pursued on IC and this does give us, the patient, hope that that answer for IC isn't too far away. We thank you so much for appearing tonight!

<Tony> It was my pleasure, thanks for inviting me!

<Carol_L> Dr. Buffington, I want to thank you so much for this very informative meeting. I appreciate your time so much, and I have learned a great deal from your generous time with us.

<ICNJulie> Thank you so much for your time.
<SueC> Thank You!!!!!! TONY!
<icnjill> THANK YOU ALSO TO ICNJULIE FOR SETTING THIS UP!
<ICNKEN_AWAY> THANKS TONY
<icnjill> AS USUAL, SHE DOES A REMARKABLE JOB!
<james> clapclapclapclap!
<SueC> Thanks Julie
<Carol_L> Julie, thank you very much, and Jill, too.
<Carol_L> Your research is so fascinating
<ICNKEN_AWAY. DR T, CAN THE CAT'S DIET EFFECT THE BLADDER LIKE HUMANS, WITH URGENCY,PAIN ?
<Tony> Yes it can; we found that increasing water intake helps
<james> Doctor Buffington, how would you respond to a well learned patient if she came to you and you knew nothing of IC? Would you keep an open mind?
<Tony> I try to
<icnjill> Julie.. thank you soooo much! you did a great job!

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Referenced Websites:
Ohio State Univ. Vet. Hospital Nutrition Support Service
Review ICN Disclaimer

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Special gratitude to Julie Halbur for coordinating this exceptional presentation.

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Please review the ICN Disclaimer: Active and informed ic patients understand implicitly that no patient, or website 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: http://www.sonic.net/jill/icnet/disclaimer.html.

© 1998, 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. Tony Buffington & Jill Osborne. For additional use, please contact the ICN at (707)538-9442.