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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
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