Lupus Autoimmune and Macrobiotic?

[a4patch]

I am not sure if I am posting this in the right place.
Any folks out there with autoimmune diseases that have be helped by macrobiotics? I have lupus (SLE) (diagnosed in 5\1999) with lupus nephritis. Any suggestions or recommendations to customize the diet to this disease would be most helpful.

I have not had a kidney biopsy but they say I am stage 3-4 with kidney disease.

Thanks,

PSD

[meg wolff]

Hello,

I read your question about Lupus and Macrobiotics and have a friend who has he story of healing from Lupus on my website.(www.macrobreastcancersurvivors.com) I have cut and pasted it here for you. She can also be reached at michele.niese-mrak@unh.edu Her is Michele's story:

I was always the type of kid who never got sick.* I actually won awards for never missing a day of school in elementary school.* A gymnast, runner and tri-athlete, I thought I’d always be forever healthy and strong.* You could’ve knocked me over with a feather when at 21 I developed Irritable Bowel Syndrome (IBS) and by 30 years old, I had Immune Thrombocytopenia.* By 32, Lupus.




In high school and college I had a horrible diet regimen.* I drank coke by the gallon and ate M & Ms by the pound.* I went for months at a time without a single vegetable.* Any of my college roommates will heartily vouch for that.* Consequently I struggled with my weight and tried every fad diet known to the American advertising circuit. *

By my senior year in college, I started experiencing gastrointestinal problems.* After several lengthy and invasive tests, the doctors diagnosed me with IBS or Irritable Bowel Syndrome and suggested a glass of Citrucil or Metamucil two times a day.* At the time, I remember asking whether I should change my diet because I seemed to have a strong reaction to ice cream and milk.* The only thing that didn’t upset my stomach, I found, was oatmeal.* They promptly diagnosed me as lactose intolerant and recommended over the counter pills to take along with any dairy I ingested.

At that point, I was in some pain from the cramping associated with IBS and wanted to learn more about diet.** I went downtown to our local health food store and spoke with the manager.* Looking for a dairy-free cookbook, the manager began talking to me about macrobiotics.* He recommended Michio Kushi’s The Standard Macrobiotic Diet, and told me his story about recovering from cancer through diet.
**
I went home and tried to read it.* I admit I had trouble understanding it and decided to try a recipe and see what it was like.* I made a lentil bean dish that took me approximately 2 hours, all the while, shocked by the idea that anyone would actually take the time to soak beans overnight.* The dish turned out pretty well, but I was certainly not willing to give up my college diet of pizza and ice cream for it.
** *
So, I ignored the pain and continued on with my diet of coke, chocolate, ice cream and my all-time favorite, pizza!* Sadly, I didn’t grow out of these habits.* In fact they grew worse.* By the time I was 28 I needed a 20oz coke simply to function by 10am every morning.* I felt I needed the sugar and the caffeine to stay awake.* By noon, I’d need another.
** *
April of 2000 rolled around and I was really feeling badly.* I experienced nausea each morning and was diagnosed with mononucleosis and a platelet count that dipped below 10,000.* At that point, my blood no longer clotted and I was hospitalized immediately.* High doses of prednisone boosted my platelet count.* It was my immune system that was actively attacking its own platelets.* What a wake up call.* I remember saying to my husband, “I think it’s my diet, I think it’s my diet.* I have been abusing myself for so long… this is why this has happened to me.* I need to clean up my act.”
** *
Upon my release from the hospital, on massive doses of prednisone for the next 6 months, I remembered my experience with macrobiotics and went out and bought every available book on macrobiotics thinking that this might be my solution.* A very good friend and I got together one night and cooked a meal.* It took us 4 -5 hours and turned out pretty well.* I continued to practice my interpretation of macrobiotics.
** *
Once I was off the prednisone, I thought I was fine.* The doctors told me that it was probably a “one time thing” and nothing to worry about.* Most of the time, they never saw another incidence… they even thought it was the mononucleosis that was killing my platelets rather than my immune system. *
** *
So, I was fine for a while, and gradually returned to my old eating habits.* By the following April I caught a cold, with mouth sores I couldn’t get rid of and my platelets dropped again.* Back on the prednisone, the doctors ran more tests suspecting Lupus.* By November, I had met all of the diagnostic criteria for Lupus, with swelling in my joints, arthritis in hands, wrists, knees, periodic mouth sores, bleeding gums, miscellaneous inflammation, a butterfly rash across my face, and wildly vacillating platelets.* I had difficulty grasping the steering wheel of the car my hands were so swollen with arthritis and on many days was unable to climb the stairs my knees were so swollen.* More than that I felt a sense of fragility that made concentration and walking to the end of the driveway a chore.* A rheumatologist couldn’t see me until the following April, so I decided I had to do something on my own in January.* I called the Kushi Institute and asked what they would recommend.
** *
I couldn’t afford to attend their Way to Health Program, so I read every book I could get my hands on and followed their recommendation of brown rice and miso soup every day.* As April 2002 approached, I started to realize I needed help to make the diet specific to this disorder.* I called a woman whose story I’d seen on the Kushi Institute website who had recovered from ITP.* I asked her what she did to recover and she recommended I see someone she’d seen lecture from Boston.* I called him that day and made an appointment to see him.

By the end of April 2002, another cold brought about another drop in platelets.* By this point I refused the prednisone because the side effects were so strong, opting to see if perhaps the platelets might come back up on their own because of the way I was eating.* Sure enough they did.* I met with a local rheumatologist who told me that I was definitely a case of Lupus, which was devastating, and that I would need to go on drugs for the rest of my life in order to control my platelets.* These drugs, I later found, cause cancer over the long term and retinal deterioration, blindness, in the short term.* I refused the drugs again saying that I wanted to pursue a diet change first.* She checked my platelets every three days and found them still wildly vacillating.* She left anxious messages on my answering machine telling me I had to go on the drugs and soon.* Instead, I chose to meet with the macrobiotic counselor, Warren Kramer, in Boston. *

My husband came with me to Boston that day, as my constant and unwavering support system.* As we sat outside his apartment in Jamaica Plain, I remember thinking, this is really “out there.”* “What in the world are we doing here?”* Everyone in our family encouraged me to go on the drugs.* How bad could they be?* We went inside and met with Warren.* He made recommendations and even told us some things about ourselves that we didn’t think anyone could possibly know.* Most importantly, he told me I’d be okay.* I believed him. We went home committed to giving this a try and using the drugs as a last resort if this didn’t work.

I followed Warren’s recommendations as accurately as I possibly could, cooking for 6-7 hours daily, and holding my rheumatologist at bay.* I attended cooking classes in Boston every chance I could and continued to read and cook. *Gradually I began to feel stronger and better.* Gradually the symptoms of sores, arthritis and rash disappeared.* More importantly the platelets stabilized within a normal range.

By February 2003, a new rheumatologist told me I no longer met the criteria for Lupus and in fact he didn’t think I’d ever had it. *It is now August 2003 and I still have not had a recurrence of the low platelets and continue to practice and learn and to feel good.




About Michele Niese-Mrak

Michele is 34 years old living in Dover New Hampshire.* She earned a bachelor's degree in English Lit and Women's Studies from Skidmore College and a Master's Degree in Psychology from Pepperdine University.* Michele currently works for the University of New Hampshire in Undergraduate Admissions.* She loves macrobiotic cooking and helping others teach cooking classes and being an active member of my church.


















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