Update!

 
 

This is to followup on my progress in getting some doctors interested in looking at nutritional strategies to improve RP or put it into remission, as I believe is why I am healthy today.

I sent a letter to Drs Trentham and Buckner last month. A copy of that letter is below.

I received a phone call from Dr. Trentham this morning. He sounded very nice, and sort of had a southern accent.

He thanked me for my letter and said he was good friends with my former rheumatologist, Rodney Bluestone, adding that I "had gotten the best of care" under Dr. Bluestone.

He said he wasn't aware of anyone else who had tried a vegan diet, as I had, though he said he knew about the diet.

Of the diet he said, "Well that's great if you can stand it; it's pretty stringent."

I was thinking -- "Stand it? I love it!"

He had no questions for me and didn't express interest in seeing my files.

He said, "The disease waxes and wanes. We can't know for sure whether the diet was a contributing factor."

I replied, "Yes, well three years is a very long time to have the disease in remission, don't you think?"

"Yes, and I'm not going to jynx it," he said, "so I'm going to get off now and wish you continued good health."

That was pretty much the call. It was pleasant and fairly short.

I had hoped that Dr. Trentham might be interested in looking further into my case since he has apparently studied many other RP cases, or even perhaps setting up a small study to see whether dietary intervention could provide quick relief for others suffering from RP, as I believe it did for me.

Guess this just means we'll have to find people on the Internet with RP who will try eating this way. If others try it for a month and also improve, perhaps then Dr. Trentham would be interested in looking seriously into this to see if it there is in fact a relationship between the disease activity and diet in some people.

The one comment of Dr. Trentham's that struck me as odd was the idea of "That's great if you can stand eating that way, the diet is pretty stringent." From my experience it was far harder to stand having the disease be active (and getting sicker and sicker) than changing how I ate and getting better...


Also see Update 2 -- Response from Dr. Buckner

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Copy of my letter:

November 19, 1999

Jane Buckner, M.D.
Virginia Mason Research Center,
Benaroya Research Institute
1201 Ninth Avenue
Seattle, Washington 98101-2795

David E. Trentham, MD
Division of Rheuumatology
Beth Israel Deaconess Medical Center
330 Brookline Avenue,
Boston, MA 02215


Dear Drs. Trenthan and Buckner:

My name is Sabrina Nelson and in 1995, Dr. Rodney Bluestone of Beverly Hills, California, diagnosed me with relapsing polychondritis. After a year of flareups involving my ears and chest and with multiple blood markers which, Dr. Bluestone told me, were associated with the diseases’ activity, I made a significant change in my diet.

One month after I changed my diet my blood work showed normal for the first time since my diagnosis, and my symptoms went into remission, where they have stayed to date (over three years).

It is my belief that the change I made in my diet was the principal reason for my remission, and I believe others could benefit by studying how I improved and, perhaps, putting other RP patients on the same diet to see whether any achieved a similar remission or improvement.

In order to facilitate studying my case, I am offering to have Dr. Bluestone forward my medical records to each of you for review (after removing perhaps some personal, non-medical information from them) as I am advised you are top researchers in this field who might be interested.

Here is my story. During late summer of 1995, one of my ears turned bright red, began blistering and was extremely painful. Prior to that I had been having problems 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. A few doctors later, I ended up in Dr. Bluestone’s office in late 1995. (A dermatologist I had seen before him had given me prednisone for a bad flareup.)

I was 29 and a pregnant mom at the time. I recall Dr. Bluestone noted with some interest when I told him that I had had an extremely bad case of chicken pox when I was 16 years old.

During the course of the next year or so after first seeing Dr. Blueston, I had repeated episodes where my ears got red and painful, and at one point when I got some sun on my chest on vacation, it got very red and felt like it was burning on the inside, making it difficult to breathe. Dr. Bluestone said my chest area might be becoming involved.

In August of 1996, while resting during a flare-up I read a book called “The McDougall Program,” by John McDougall, M.D. I had received it as a present the Christmas before because it contained vegetarian recipes and we had been vegetarian for six years up to that point. In the book, Dr. McDougall discussed a number of autoimmune diseases which have responded favorably to the elimination of meat, chicken and fish (a vegetarian diet) as well as dairy and eggs, and keeping oils/fats low (a “low-fat vegan” diet). He also said that if that didn’t work, one could try an elimination diet taking out things like wheat, corn and some other foods which have also been shown to be problematic in some people, to see if the condition responded.

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 it.

I started eating “vegan” the day I read the book, and was very careful to read every label to make sure there was no “casein” or “whey” in any of the products I ate. (I have come to understand that Dr. McDougall’s diet is the same as Dr. Dean Ornish’s diet for reversing heart disease, except that Dr. McDougall does not allow any non-fat dairy products, whereas Dr. Ornish does.)

I started feeling better very soon, perhaps because I was losing some of the weight I hadn’t lost since giving birth several months earlier. After I went in for my next checkup with Dr. Bluestone (about a month after changing my diet), Dr. Bluestone said my blood work was normal for the first time since receiving my diagnosis. I saw Dr. Bluestone two more times over the next two month and was having no RP problems, and Dr. Bluestone said my symptoms were in remission.

That was in late 1996, three years ago. I have had no more recurrences 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 a great deal of trouble sleeping due to my injuries. I saw Dr. Bluestone twice who said all my tests were normal, thank goodness. Since it went away shortly, I wondered if it was just the damage done before my remission giving me occasional pain in the month after the car accident trauma.)

Dr. Bluestone was very supportive when I changed my eating habits, and told me most of his patients will not commit to the kind of diet I followed. When he noted my cholesterol had fallen to 135 (it had been something like 260 when I first saw him, while pregnant), he commended me, saying, “Your dietary strategy is working.”

I certainly felt that it could not hurt me to try this diet, and I definitely credit this diet with helping me. I wonder whether it would help other RP sufferers in the same way or in some way, and really believe this should be looked into. I have attempted to get other RP sufferers I have met on the Internet to try it. Perhaps more would try if they had the kind of support I had from Dr. Bluestone. I especially think someone who is in the first year of their disease, as I was, could benefit tremendously, if not by arresting then perhaps by slowing the progression of the disease.

Dr. McDougall runs a hospital center in Northern California and is presently conducting an arthritis study at the University of Florida. He has a website at http://www.drmcdougall.com. On his site he has information about 20 or so published studies of arthritis patients who improved (some dramatically) by going on different diets (chiefly ones where animal proteins were eliminated). You may already know all this, but here is a link to one of his articles: http://drmcdougall.com/Newsletter/may_june1.html

Some RP patients I have met through the Internet have said their doctors say there is no relationship between diet and RP. Unless there has already been a study conducted which I don’t know about, I am not sure why they would be told that. One person asked whether I would start eating dairy, eggs, etc., again to see whether RP symptoms would reappear, which might prove that the diet was the reason I got better. But the answer is no because there is no way I would risk my health by doing that.

If you are interested in looking further into this, please contact me by email or phone (my number is at the end of this letter). I would be happy to contact Dr. Bluestone and authorize him to forward copies of my records (with non-medical information redacted, so there isn’t a lot of my personal information floating around out there).

I look forward to hearing back.

Sincerely,


Sabrina Nelson