My story: November 11, 1999 -- If you've found this page you probably already know what relapsing polychondritis (RP) is. (If you don't know, you can read an article by Dr. Trentham, one of the foremost authorities on the subject, at http://rpolychondritis.tripod.com/DRTrentham.html. If you or someone you know suffers from a different autoimmune disease, read on: what helped me might also help others with related conditions.)

When I was diagnosed with RP, the Internet wasn't in full swing yet (or at least we weren't on it) and so my OB/GYN did some research in a medical library (I was pregnant at the time) and gave me some general information. It wasn't until several months later after we started using the Internet, and I began doing my own research on RP (seeing photographs, reading case studies, etc.) that I really understood how serious and awful a disease RP is.

My story is simple. During late summer of 1995, my ears turned bright red, began blistering and were in an enormous amount of pain. Prior to that I had been having trouble with my ears which I had thought at first was a very bad sunburn. But now I realized it was something much more. I got bounced around to different doctors, the first of whom (an ear, nose & throat guy) thought it might be this extremely rare disease called RP, which he said would be quite serious. Several doctors later, I ended up in the office of Dr. Rodney Bluestone, a noted rheumatologist on North Bedford Drive in Beverly Hills, California.

I was a young and pregnant mom at the time -- probably Dr. Bluestone's youngest patient. Most of the others in his waiting room were grey-haired and much older arthritis patients. (Dr. Bluestone headed the Southern California Arthritis Foundation.) The first time I saw Dr. Bluestone, he asked me bluntly, "What's a young woman like you doing coming to my office?"

Dr. Bluestone used a blood test, among other ways, to help confirm a diagnosis of RP. After getting a diagnosis, Dr. Bluestone said that while there wasn't any cure for RP at this point, they could teach me how to live with it and provide medications that could ease symptoms. Because I was pregnant and then later breastfeeding, I wanted to keep the drugs to a minimum as much as possible.

Fast forward about six months. I was having blood tests to track my SED rates, and periodically having episodes where my ears got red and painful, sometimes blistering. My husband, kids and I went on vacation to Hawaii and I got some sun on my chest, and the sunburn began to feel like it was burning on the inside. I had an episode where I could barely breathe, and I remember laying awake one night all night on the couch struggling to breathe. It was terrifying. I called Dr. Bluestone from Hawaii and he said to stay out of the sun, that my chest area might be becoming involved in the RP. I saw him right away on my return.

Several months after that, in August of 1996, we were returning from another trip where I'd had another flare up, and so I was upstairs resting while my husband unpacked. I happened to pick up a book my sister had given us as a Christmas present called "The McDougall Program," by John McDougall, M.D. I guess she had chosen this book 8 months earlier because it had vegetarian recipes in it and because we were vegetarian (and had been for six years). But I realized in reading through this book that it was a lot more than just recipes; my eye caught a mention of autoimmune diseases in the lupus family. Dr. McDougall said that a number of autoimmune diseases have responded very favorably to the elimination not only of meat, fish and chicken (a vegetarian diet, which I already ate), but also especially by eliminating dairy products and eggs (a so-called "low-fat vegan" diet).

This got my full attention. I remembered Dr. Bluestone saying (a year earlier) after I had mentioned that I was vegetarian that "vegan is best" though I didn't think much about his offhand comment at the time and didn't even know what vegan meant when he said that. I got up from reading the book and walked downstairs and told my husband what I'd just read, and I said: "That's it; we're vegan."

So my husband and I went vegan, just like that -- no meat, chicken, fish (vegetarian), and no dairy products or eggs (vegan). In short, no animal proteins in any form whatsoever.

It wasn't that difficult for us to make this transition, though I suddenly had to learn new recipes and become aware of ingredients, including things like "casein" and "whey" which are dairy proteins used to thicken up a lot of products. I became a label fanatic, and when in doubt, I didn't eat it.

We started out by following McDougall's low-fat vegetarian diet in his book, which gives a 12 day menu and has recipes for every meal during the 12 days. That helped to make the change easier.

I did actually feel better after eating this way for a couple of weeks, maybe in part because I started losing some of the weight I'd gained from my recent pregnancy (hate those plateaus!).

One month after my husband and I went on Dr.McDougall's diet, I went in for my checkup with Dr. Bluestone.

My SED rate was normal.

In addition, the anti-nuclear antibodies in my blood which signaled the degree of activity of the RP -- were not present for the first time since Dr. Bluestone had started taking my blood samples a year earlier. I had also begun a mild exercise program when I started Dr. McDougall's diet, including going to the gym and working out lightly, and walking on a treadmill. I had also started doing cross-stitching as a way to relax and control stress.

After three months and three bloodtests where my SED rate and other indicators were normal, Dr. Bluestone declared my RP "in remission."

That was in late 1996. I have had no more recurrances of RP since that time. (I was in a serious car accident around July of '97 and my ears started to get uncomfortable because I was having trouble sleeping due to my injuries. I saw Dr. Bluestone twice and all my tests were normal, thank goodness, and so it was probably just the damage done before my remission giving me occasional pain in the month after the car accident trauma.)

I don't think I'm just "in remission," but am "cured" -- as long as I don't eat dairy (like cheese or ice cream), eggs, meat, chicken or fish. And I'm not saying that I believe these foods caused my RP. Nobody seems to know what caused it, although Dr. Bluestone mentioned a theory about my having had chicken pox as an adult, and then the disease becoming active when I got pregnant and was under a lot of stress. But I think that eliminating these certain foods allowed my immune system to start working right again. Dr. McDougall explains from a medical point of view why he believes eating this way helps.

In improving our diet, my husband and I both lost weight, and another nice side effect was that our cholesterols went way down. Mine is 135, and according to William Castelli, MD, who ran the Framingham Heart Study -- the longest running heart study in the world which has set standards used by the medical profession for heart disease risk factors -- no one whose blood cholesterol was less than 150 ever had heart disease. Also, we have since discovered all kinds of really delicious foods, fake meats, soy and rice milks and all kinds of stuff we eat all the time so we never feel deprived.

My advice to anyone suffering from this awful disease is this: look into nutritional strategies to improve your condition! If you want to try what worked for me, go to your library or bookstore and get John McDougall's books ("The McDougall Program" is the best and most practical, and "The McDougall Plan" is also very interesting reading about the relationship between diet and disease). Also, I suggest you write to Dr. McDougall, write to me if you want, give it a try and stick with it a month or two. I hope it helps you as much as it helped me.

Dr. Bluestone said most of his patients will not commit to the kind of diet I followed. Personally, I am convinced that switching to a diet devoid of animal proteins saved my life. I have been able to fully return to life as before. To me it seemed far more inconvenient to live life on medication and in pain than to make some changes in my diet and develop some new tastes. And trying a dietary change was a whole lot less radical than many of the powerful drugs people often must take to get only temporary relief. (It also doesn't cost anything extra just to eat different foods!)

In other words, it cannot hurt you to try and it might help.

You can visit Dr. McDougall's website at http://www.drmcdougall.com. If you're an RP sufferer or know someone who is, I would get his book and if it makes sense to you as it did to me, consider trying his diet for a couple of months. If you do, do it right and don't cheat. Give it a chance.

Here is a link to some interesting info on Dr. McDougall's site about arthritis, much of which he believes applies to RP and other autoimmune diseases:
Diet: The Only Real Hope for Arthritis (be sure to see the second page.)
More on Arthritis

Feel free to write to me using this form, and to Dr. McDougall at drmcdougall@drmcdougall.com. (I can only talk about my own experience and won't give medical advice.)

Educate yourself about nutrition. Unfortunately, many MD's aren't as educated about nutrition as they could be. I have met people through the Internet who were told by their own highly prestigious specialist that diet has little or no effect on autoimmune diseases. When that happens, I have suggested the person ask their doctor whether they've ever studied people like me, whose RP went into remission apparently due to diet. And if their doctor has not studied someone like me, I would ask: well why the heck not?!

I was lucky because Dr. Bluestone was very supportive. If your doctor is one who pooh-pooh's the essentially risk-free strategy of changing your diet to try to improve your condition, you should ask: How many patients of yours have had their RP put into remission for years using the strategies you employ? What is your success rate and can I speak with those people?

I know the answer as far as Dr. McDougall is concerned: people with a number of diseases following his advice have gotten better, not sicker, myself included.

I also endorse the work of Dr. Joel Fuhrman MD. You can read about some of his work putting diseases like arthritis and lupus into remission, see: http://www.drfuhrman.com/

By the way, I can definitely understand the skepticism that anyone with RP might have in hearing my story, and I know that people definitely do not want false hopes. I'm not selling anything and have nothing to gain by telling what happened to me. I am not even saying that someone else who does what I did will for certain have the same good results. I don't know if they would or not, but I do know that no doctors are studying me and how I got better, and as far as I know, no doctors are setting up studies to see if a diet like the one I believed helped me could help others.

Someone recently asked if I would start eating dairy, eggs, etc., again to see whether my RP would return, which could prove that the diet was the reason I got better. But there is no way I would risk my health by doing that.

If someone wants to have their doctor confirm with my rheumatologist, Dr. Bluestone, that in fact I was an RP sufferer diagnosed in 1995 (it started hard in August), and that it went into remission in October of '96, and that my cholesterol and blood signs improved and so on, I would be happy to facilitate this.

Someone also asked me recently whether it's possible my changing my diet and my going into remission were just coincidence, whether I would have gone into remission at that point anyway even if I had kept eating the same way. I guess anything's possible; you could take a medication and improve, and say it's just a coincidence, too. Maybe someone else will try what I did and have their own "coincidence."

I was also asked whether it's possible I had a "mild" case of RP compared to some others, so that maybe what worked for me wouldn't work for others. As I said, I don't know whether it would work for others or not, though I think it probably would help at least some others. That's my opinion, and if it would just help some people, then that would be fantastic -- and very telling. Also, while it's possible I had a "mild" case of RP, it sure didn't seem that way at the time. And if it was mild by whatever measure, is it possible that might be because I was already vegetarian at onset, and not eating that much animal protein as other people to begin with?

The same person asked whether it's possible Dr. Bluestone and the other doctors misdiagnosed me, and said I had RP when perhaps I had another disease with identical symptoms. Again, anything is possible. And I guess if Dr. Bluestone did misdiagnose me (which I seriously doubt as he really knows what he's doing), then that would raise the possibility that some or many other people who believe they have RP actually might have also been misdiagnosed and have something different, too. And so if they were like me, maybe the diet I tried would work for them, too, in putting their own "misdiagnosed" condition into remission.

An MD friend has suggested we have my case written up and submitted to medical journals as a letter to the editor, which we are looking into now (November of 1999). That way, perhaps other RP sufferers and their doctors out there could get some new information to consider from my situation, and maybe others will benefit as a result.

If you or someone you know with RP looks into this and decides to try what I tried by eating this way, please let me know and let Dr. McDougall know. If three or four or six other people get improvement or remission from changing to this diet, we must all definitely make certain this information gets out to as wide an area possible in the community of RP sufferers.

I am a 33-year-old mother of three. What worked for me since 1996 and still works today, was getting on a low-fat pure vegetarian diet, getting my stress under control, and keeping my body fit. From my personal experience, those three things are key to regaining as well as maintaining health. I wish you the same good luck I have had.