My story: November 11, 1999 -- If you've found this page you probably already know what
relapsing polychondritis (RP) is. If you or someone you know suffers from a different autoimmune
disease, read on: what helped me might also help others with
related conditions.
WATCH TV INTERVIEW OF SABRINA DISCUSSING HER REMISSION with Dr. McDougall
I get a lot of interesting emails from other people who try what worked for me and who also see big benefits. Here are a few such emails:
From K.K. on 3/10/11:
"Dear Sabrina:
I want to thank you for your website, as it probably saved my life and my sanity! I was diagnosed with RP in August 2009, and as a generally healthy 51 year old woman, I was a bit surprised. I’d had 3 incidents in 7 months where my ear or my nose got inflamed and painful, and suddenly I’m told I had a disease that could kill me and the only option was to take steroids to slow it down!
"I know what steroids can do, and I was desperate to find other options. The rheumatologist gave me the website he used so I could read up on it. I called in sick and spent a week researching this disease… Your website was the only positive breath of air among all the chilling medical info that churned up in my searches. I read every word and every article you posted, and also the articles by Drs Furman and McDougall. And yours was the only reference I shared with my parents and sisters…
"I started a vegan diet the following week, cold turkey. I also linked my incidents to periods of high stress at my job (I was a chemical engineer for a large oil company for 30 years, living in the fast paced city of Houston), so I decided to ask for early retirement. They were happy to grant it, as end 2009 was a time of downsizing. I had consulted with my internist, and he supported my plan, and helped me get baseline tests for all the areas the disease might impact without obvious symptoms… my throat and heart valves and eyes. I sold my Houston home and moved to the mountains of northern Georgia with my partner and 3 dogs. NO relapses to date! I really believe that there is a strong mind/body connection, and your website gave me the info I needed, but most importantly, it gave me hope! Thank you, thank you, thank you! Best wishes to you and your wonderful family!"
From TC on 12/27/10:
"Sabrina, In this season of gratitude, I wanted to thank you for sharing your story on the internet. Earlier this year I began developing symptoms consistent with an autoimmune disease. Wondering if any of it was related to diet, I did a search and your sight on RP popped up right away. I followed that to Dr. McDougall’s site. I changed my diet slowly over a few months, and now I have no more symptoms whatsoever. I lost weight and feel younger. Can’t beat that! My best wishes to you and yours for a fantastic 2011.
Peace,
T.C."
From LK on 3/6/10:
"I just wanted to let you know that I just received my blood work after a month of being a wheat free, soy free, plant-centered. On January 25 my sed rate was 30 and my C-Reactive protein was 9.4. Both were flagged high. I had my blood tested on March 3 and was suffering from iritis at the time of my blood test but had no other symptoms -- and my sed rate was 5 and my C-Reactive protein was 0.3!!!!!!!!!!!!!! I was sure because I had an iritis flare at the time of the blood draw that it was going to show up.
"This was just the boost I needed to show me that I am on the right track. I owe this all to you. Thank you for pointing me in the right direction with your web posting. I need to go share this with Dr. McDougall.
"Hope all is well.
L K"
Sabrina comments: Like me, Linda got a very fast benefit -- just 5 weeks. I have also communicated with people who take longer to get the benefit, but because they stick with it, they eventually do after some months. Linda communicated directly with Dr. McDougall, as I had recommended (I'm not a doctor and can't advise people, can only tell what I believe put my own RP into remission).
Update from Sabrina - 6/28/09: My husband and I made a documentary called PROCESSED PEOPLE. It is about the relationship between the American diet and many common diseases. In the film are shown people with serious diseases like MS who arrested the progression of their disease by changing to the same diet I eat. You can watch trailers for the documentary here.
Update from Sabrina - 9/10/11: Regarding my health: I am still doing great, busy with life. I receive emails every week from other RP sufferers, and a number of them report to me they get a lot of relief and some also get remission by changing their diet as I did. So I believe more and more that my recovery is not an isolated, freak coincidence -- other people who have dramatically changed the way they eat are beating this disease and getting off their meds as well. By the way, the same diet that is putting RP into remission has been shown to be effective for sufferers of Lupus, IBS, fobromialgia, athritis and other conditions, see this page on Dr. Joel's Fuhrman's website.
Update 02/6/04:
I often get emails from autoimmune disease sufferers saying, "I'd like to try doing what you did, but how can you give up meat, cheese and ice cream?!" My answer is: Why would you choose those foods over your health? The truth is, people use the phrase "giving up" because they think they're making a sacrfice. I'm not sacrificing anything because I love the foods I eat and I don't miss anything from the way I used to eat. I get the pleasure of eating delicious food and being healthy to boot. I recently got a pressure cooker which revolutionized our vegetarian eating. Click here to read an article I wrote on it.
Update
11/17/01:
I
got an email last month from an RP patient who said
she had elminated all animal protein from her diet following
Dr. McDougall's program, had greatly improved and gone
off steroids, then had a couple relapses sometime later.
She said she suddenly realized that each relapse had
occured after her carpets were professionally cleaned.
So she stopped having them cleaned and started using
natural cleaners rather than the harsh chemicals, and
she got rid of all chemical cleaners in her home --
and she says she has had no relapses in over a year.
This underscores my belief that exposure to things in
the environment -- whether through what you eat or what
you breathe -- can definitely impact your body's immune
system and ability to function right. Obviously, changing
your diet or your cleaning products is much less radical
than having take powerful medications, which have their
own terrible side effects.
Update
12/5/00:
I
have received hundreds of letters from people with RP
since putting the site online one year ago. A few dozen
have told me they've tried a diet devoid of animal protein,
and most are reporting benefits ranging from asthma
clearing up to lessening the severity of relapses, to
a few who said they have not had any relapse since eliminating
animal proteins.
It
is very encouraging to me to see that diet appears to
be playing a role in other people regaining their own
health. The Internet is a way for people to get potentially
important information that they may not get from their
doctors or other sources.
Update
12/6/99:
I
spoke with RP expert Dr. Trentham today. Click
here to read about my call.
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 a
noted rheumatologist in Beverly Hills,
California - he was also president of the S. California Arthritis Foundation at the time.
I was a young and pregnant mom at the time -- probably this doctor's youngest patient. Most of the others in his waiting
room were grey-haired and much older arthritis patients.
The first time I saw him, he asked me bluntly, "What's
a young woman like you doing coming to my office?"
The rheumatologist used a blood test, among other ways, to help
confirm a diagnosis of RP. After getting a diagnosis, he 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 rate, 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 the doctor
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.
Light at the end of the tunnel?
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 a friend had given us as a Christmas present
called "The McDougall Program," by John McDougall,
M.D. I guess my friend 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 the rheumatologist 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 by Dr. McDougall 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 gave a 12 day menu and had 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 the rheumatologist.
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 the doctor 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, the rheumatologist 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 the rheumatologist 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.)
In Remission
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 the rheumatologist 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 with a lot of hormones activated.
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. You can watch a short video of Dr. McDougall describing the mechanism of autoimmune diseases to understand how the environment that you take into your body (food) can trigger autoimmune respones. Watch video here.
I also found it interesting that on WebMD's page about RP, they note that in studies they gave animal populations injections with bovine type II collagen, and 14% of the animals developed an immune response just like RP -- and 66% of the animals developed arthritis. I don't know whether testing on an animal has anything to do with what happens to a person, but to me this is rather in line with Dr. McDougall's theory, that animal protein you take into your body can trigger autoimmune responses that end up attacking and damaging your own body.
By the way, the WebMD page linked above quotes a study that 45% of people diagnosed with RP are dead in 10 years -- and those are probably a bad 10 years. I was diagnosed in Sept of 1995. I'm writing this paragraph in March of 2021. 25-plus years out, and not only am I not dead, but I'm thriving and doing well. I will stick to my diet.
I find it sad that there is little or no dietary and lifestyle advice being giving anywhere I can find on the internet about this disease. I am the only one I know of encouraging people to change their diet to see if they can have a remisson. True, I am not a doctor. But I am a survivor.
Side Benefits
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. Also, we have since discovered all kinds of really delicious
foods
we eat 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 one of John McDougall's books such as "The
McDougall Program" or
"The McDougall Plan" or "The Starch Solution."
I
suggest you give it a try and really stick with it for a few months to see if you get great results. I hope it
helps you as much as it helped me.
My rheumatologist said most of his patients would 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.
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
We have a website at https://www.vegsource.com - it is just information about diet and health. It doesn't have ads and is not for selling, just education.
This webpage you are on has apparently helped hundreds of people
I have gotten a great deal of emails from people who said they got an RP diagnosis, and that this website was the only positive information they could find, and asking questions. I have gotten scores of emails from people who say they adopted this diet and put their own RP into remission.
Through VegSource, we put on conferences and events to educate about plant-based diets. We put on one a few years back at a resort in Kauai, one of the Hawaiian islands. One couple who signed up was coming all the way from the East Coast. Before the event they contacted and asked if they could arrive early and check into the hotel, in order to get acclimated to the time change before the event. We said sure, that we would be there early ourselves, and would be happy to meet them at the airport.
We didn't know who they were, but on driving them to the resort when they arrived, we asked what prompted them to attend our event. The woman said that she had reversed her RP from finding this page and trying the same dietary approach, and that she "wanted to come thank the woman who saved my life."
It has been rewarding to know that my story has helped others.
Learn about healthy eating
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 RP 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 my rheumatologist 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's success rate is concerned: people
with a number of diseases following his advice have gotten
better, not sicker, myself included.
Does Your Doctor Know Best for You?
A few years ago, I spoke by phone with another woman with RP who, after reading about my success, had set up to go to Dr. McDougall's clinic to learn how to eat this way. She was very excited, until her doctor (one of the leading RP doctors in the country) told her that changing her diet wouldn't help, that she had a "different" type of RP than I had. Mind you, this doctor had never seen me or my medical records, so how he knew my RP was "different" from this woman's (if he did), I don't know! But I do know that he talked her out of trying a different diet. Certainly there is no harm in a plant-based diet, no harm in trying. So why would this top RP expert doctor want to talk his patients out of even trying what worked for me? I find it very troubling, and I feel sorry for the woman whose hopes were dashed to the point where she didn't even try. I hope she is still alive today.
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.
Questions I've gotten
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 some researcher wants to have their doctor confirm with my rheumatologist 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 my rheumatologist
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 this celebrated rheumatologist (taught at UCLA, head of S. California Arthritis Foundation) did misdiagnose me, 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.
I am a mother of three, over 26years out from my diagnosis. 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.
Here is a video from a non-profit program that my husband and I run, going into underserved areas and helping people regain their health. In this case, a woman following this diet stopped her lupus, and describes what happened changing her diet:
