Robyn’s Healing Story (Lupus)

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Robyn at the playground with her husband and children

“I believe absolutely that it is in sharing the most vulnerable aspects of our journeys that we support each other to find grace and strength and healing during equally challenging times.”
~ Baden Lashkov


Living a Resilient Autoimmune Life

Lupus is an autoimmune condition that can affect virtually any organ in the body, including the skin, joints, kidneys, brain, heart, lungs, and blood. Because its symptoms vary so much and mimic those of other diseases, it can be difficult to diagnose. Robyn Latimer was diagnosed in 1998, when she was 22 years old. She went with her doctor’s recommendations of steroids and immunosuppressant drugs, but her condition continued to worsen over the next decade. In 2009, she found the Paleo Diet. Life has never been the same.

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What were your first symptoms? When did you learn what it was?

My first symptoms included years of fatigue (my parents attributed my afternoon naps to laziness which made my life that much more difficult). Just before Mother’s Day 1998 (at the age of 22), I started to feel more lousy and my ankles began to swell and I was just achy all over. I didn’t think a lot about it, as my symptoms were never taken seriously. When my mom saw how swollen my feet and legs were becoming, she insisted on going to the doctor. My GP sent me to see a nephrologist. He, in turn, did a kidney biopsy right away. It turns out I had acute nephritis and was hospitalized immediately, as kidney failure was imminent. After countless tests that had no definitive answers (my ANA was negative at this point), they decided to try prednisone. If I responded to it, they would give me a diagnosis of lupus, if not, more tests. I responded.

Can you describe what it was like for you, when your condition was at its worst?

The worst flare I had included kidney involvement, rheumatoid arthritis, Raynaud’s and Sjögren’s syndrome all at the same time. My kidneys were not functioning properly so I couldn’t excrete fluids, which meant that my feet, ankles and legs took on the fluid. I couldn’t fit my feet into any shoes and could barely walk. I was 130 lbs and gained 10 lbs in a 24 hour period. I was so stiff, and in so much pain from the arthritis, that getting out of bed was a feat in itself. I was in the hospital for 2 weeks before the disease was under control. This led to high doses of prednisone (80mg/day), plaquinil, imuran, lasix, ranididine and didrocal for almost 2 years.

Which healing diet(s) did you choose?

At first I tried a vegetarian diet and didn’t see any results, and I really missed meat! Then I tried veganism. I was vegan for 7 months and managed to get off of prednisone but could not successfully get off of plaquinil. I went back to a standard american diet until I was introduced to the paleo diet.

How fast did you see results?

Within 2 weeks I was completely symptom free. No joint pain, no stiffness, no hematuria.

What symptoms still remain?

None!

What other areas of your health improved simultaneously?

Increased energy and a clear head. I had “mind fog” for so long I didn’t know what it was like to think clearly! My skin became more radiant. I also used to have severe PMS symptoms including very painful cramping. I no longer have any cramping during my cycle.

What areas feel immune to the effect of diet?

I still test positive for lupus, Sjögren’s syndrome, antinuclear antibodies (ANA) and anti-double stranded DNA antibodies (anti dsDNA). I don’t know if those will ever change; I hope that one day they will, and I’ll be rid of any evidence of ever having lupus. These markers don’t give me any physical problems as they are just measures of antibody presence, but it is a reminder that my body doesn’t forget easily.

Also, my immune system is an all or nothing kind of defense system. When I am in a flare, it works overtime, overproducing white cells and antibodies that literally destroy my body from the inside out. But when I’m in remission, as I am now, it pretty much goes on vacation. My ‘normal’ white cell counts are incredibly low when I’m healthy (lupus symptom free). This means I’m at the mercy of colds and flus, especially in the winter. This year is pretty bad, because I have 3 kids under the age of 5. So, between kindergarten, playgroups and childcare at the gym, I really don’t stand a chance! I do not get a flu shot because I instantly get the flu or some other nasty sinus thing. While this sounds awful,  compared to taking meds and chronic pain, I’ll take a month or 2 of this anytime!!

Finally, I still have a teensy, tiny voice in the back of my head that wonders every night before I fall asleep if I’m going to be able to get out of bed the next day. Everyday that I get up symptom-free, that voice gets smaller. I wonder how long it will be there?

What other things do you do outside of diet to support your health and healing?

I take strength & tone classes, lift weights, walk, and just started a spin class. I also take a few supplements: fish oil, fermented cod liver oil, vitamin D, magnesium, CoQ10 and astazanthin.

Are you on any over the counter or prescription medication now?

No, I am completely medication free.

How strict were/are you on the dietary protocol? Any “cheats”?

Well, paleo differs a little bit depending on who you are talking to. Paleo to me means NO grains (wheat, corn, soy, rice, etc) and NO processed vegetable oils (soy, canola, corn, etc). It is a low carb, moderate protein, high fat way of eating. I eat grassfed/pastured animal protein, and lots of vegetables and good fats (avocado, rendered grassfed tallow, bacon fat, olive oil, grassfed butter, ghee, coconut oil) and some fruit. I do eat a little dairy in the form of grassfed butter, ghee and cheese (sparingly). I also have a glass of red wine every once in a while and eat dark chocolate (86-90%) daily. Some may consider these as “cheats” but I consider them as part of what makes this way of eating so divine (and easy to do!)

I went into remission on the full paleo diet, so never needed to follow the more restrictive autoimmune protocol.

In addition to watching out for what NOT to eat, I make sure to eat specific healing foods as well. I drink bone broth (that I make) almost everyday. It is almost as necessary to my day as water is! I find I get the best benefits from beef bone broth (we get a grassfed cow for our freezer, and I make sure to get all the stuff nobody else wants, like offal, bones, and back fat for rendering tallow). Another thing I do is brew my own kombucha. I drink several glasses a day. These both support a healthy digestive system, and I’m a firm believer in gut health.

Do you intend to do this diet forever, or do you hope to wean yourself off it eventually?

Absolutely forever, yes! It’s not a diet, it is definitely a lifestyle. I am 100% certain (because I’ve tried it) that I will become symptomatic if I start eating a standard american diet, and I want no part of being sick and tired ever, EVER again!

What were/are the challenges for you in sticking to the diet?

It is a difficult adjustment at first. I mean, never in my life was I ever told that grains are actually bad for you (whole grains are part of a healthy diet right?) The thought of giving up bread was obscene! I went through about a week and a half of literally feeling like death. The community has termed it “carb flu”. Flu like symptoms occur as your body starts to detox and insulin levels start to level off – sugar withdrawal. Two weeks in I was pain-free, so it was all so worth it in my book!

Who supports you in your healing journey?

My family: my husband Chris and our 3 children: Kaylen, Ava & Micah. We all eat paleo now (with the exception of what my husband eats while at work). When we switched to paleo, I noticed a stark improvement in the behavior of my kids and their ability to focus.

What advice would you give to people with autoimmune disease who are just starting to consider diet and lifestyle changes?

Give this way of eating 30 days. Thirty is nothing compared to the amount of time you probably have already spent in pain or sickness (autoimmune diseases often take years to properly diagnose). Removing gluten and the inflammatory elements from your diet may drastically improve your health and overall well-being. If this advice is different from what your doctors say, you should know that nutrition is not a required component of a physician’s education. Some medical schools don’t even offer it, and the ones that do usually offer only 25 hours of instruction (or less.) MD’s are not experts in nutritional healing. I’m not saying that I’m an expert either, but this diet changed my life.

Other Healing Stories

This is part of a series of autoimmune success stories. Click here to see the full list. They are also a regular feature of my podcast: Phoenix Helix.

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41 comments on “Robyn’s Healing Story (Lupus)”

  1. Hi Nikki. When I spoke to Robyn 3 years after this article was published, she was still in remission. I haven’t been in touch with her recently. Her family life keeps her very busy! If you’d like to hear more personal stories with lupus and the paleo diet, I recommend posting in the AIP Support Group on Facebook. You can also listen to my podcast episode, Healing Stories 4 (Linda Hardin’s story), and recently I dedicated a podcast to Lupus, interviewing an integrative rheumatologist, Dr. Daniel Lewis. Wishing you wellness in every way!

  2. Hi Eileen,

    How is Robyn now? I don’t think she has active social media. Our symptoms sound very similar and I’d love to talk to her. Do you have her email?

    Best,

    Nikki

  3. Is it okay to take a multivitamin ( containing vitamin A) while taking astaxathin? I know you should be careful of vitamin a toxicity. Robyn: are you less sun sensitive since taking astaxathin? are you able to get a tan?

    1. Wendy, Examine.com is a wonderful resource whenever you have vitamin questions. Here’s their page on Astaxanthin. They discuss dosage recommendations in their introductory paragraph, which you can use to make your decision. I’ll let Robyn know about your other question and hopefully she’ll reply with her experience regarding the sun.

  4. Wow! Robyn thanks for sharing your story. I have been dealing with lupus nephritis and it has been an emotional rollercoaster ride. I would appreciate information on how to taper off of plaquenil. If ok with Robyn I would love to have her email address

  5. I first read this article over two years ago and was inspired to try the paleo lifestyle. I realized I needed to go a little deeper and have been following the AIP for about a year.

    I just now saw Robyn’s lab update from a year ago, and am so happy for her! Very inspirational. Thank you, Robyn, for sharing your story and updates.

    Thank you for all that you do, Eileen! Your blog has been such a valuable resource!

  6. I feel like I could have written this!
    Was vegan for 6 years, (bagels and soy, yuk) found paleo 3 yrs ago.
    Started getting raynauds 2 years ago, went to doctor, had blood work done and it shows SLE (anti.Sm..), Sjogerns.. but other than a bit of general fatigue, knuckle pain (from eggs and almonds, I’ve discovered) NO SYMPTOMS! I feel like I developed lupus but have put it in remission before even truly having a flare because I already eat paleo. I now avoid eggs and almonds. Which is unfortunate but I’ve tried to reintroduce after 3 AIP trials, and no luck. The pain isn’t so bad yet that I would completely forget about them but it’s something I look for in ingredient lists and decide if it’s worth it ‘today’.

    1. That’s awesome Jenn. To prevent a lupus flare through the power of food is ideal. You are way ahead of the game, health-wise. Thanks for sharing.

  7. Two years ago, I found a benign tumor in my left breast. I decided to go raw food, but found that it wasn’t really doing as much for me as I had hoped. On a lark, I decided to go Gluten Free and after two weeks, I felt so much better. I realized that gluten was an inflammatory agent and that it may help with managing my Lupus (diagnosed at 12). For the better part of two years I’ve been pretty healthy and able to fight colds off faster than I used to.

    Suffice to say, I got Lyme disease this summer, which reactivated an old Mono infection. Yet, my bloodwork came back negative for Lupus, so I am in remission!! Because of the mono I had to go off the amoxicillan and I chose to start a natural remedy protocol for Lyme, which is also beneficial for Mono. I’m still fighting, but in remarkable health otherwise.

    My mother also has Lupus and I keep trying to get her off gluten. It’s great to read your story Robyn and I’m glad I’m really not crazy and that diet actually does work! Let’s hope more sufferers benefit as well!

  8. Update: Robyn’s latest lab results can be found on her Facebook Page. If you don’t have Facebook, here’s the summary: she no longer shows autoimmune activity; her tests came back normal.

  9. Wow. My rheumatologist believes I had lupus in my 20s. It all adds up: extreme fatigue, tissue swelling, protein in my urine, unexplained fevers, recurrent joint swellings with extreme pain, and a persistent rash on my face. My doctors in those days were idiots. I was sent to a rheumatologist by my primary care physician due to stage 3 chronic kidney disease at age 48. That was 10 years ago. Finally I had decent health insurance and a physician who bothered to run tests. I had positive ANA, anti-dsDNA antibody and positive anti-cardiolipin. The rheumatologist followed me for six years, repeating these tests every 9 months, during which time these tests were consistently positive, though not high enough to warrant treatment by that time. my symptoms had gradually diminished over the decades, but left me with permanently weakened kidney function. 15 months ago I discovered the low-carb high-fat diet and gave it a try hoping it might normalize my terrible blood lipids. My diet is not quite paleo, but I eliminated grains and consume pastured butter and wild fish. I was amazed how quickly my metabolic syndrome resolved, and recently I requested the three lupus antibody tests. To my surprise, the lupus antibodies were undetectable. If only I had known about this diet years ago, but at least I have stopped the metabolic syndrome, hopefully in time to avoid the heart disease and diabetes that affect so many in my family. I truly believe that diet is key to health.

    1. Thanks for sharing your story, Carol. I couldn’t agree more about the power of diet, and better late than never! Resolving your metabolic syndrome is something to be very proud of.

  10. Robyn,
    Thank you so much for sharing your story. I too deal with Lupus. I am very greatful. I am excited to see how l feel during the AIP diet. Your version is doable. God bless you and continue to be well

  11. I was wondering if anyone has had an improvement in their renal biopsy results following implementation of the diet. If you went from a class 4 to a 2, 3, or 5, then that’s an improvement. Or from a 3 or 5 to a 1 or 2. Either way, it would be wonderful if someone had that improvement and is willing to share.

    1. Matt, I haven’t had a kidney biopsy since 1998. Once it was determined that I had lupus nephritis, anytime I started to flare and presented with proteinuria or hematuria (through urinalysis), I was automatically put on high doses of predisone until my levels dropped to trace amounts. Since I’ve been on this diet, I test negative (not even trace) for protein and blood! While I’ve not had a biopsy to determine the state of my kidneys now, the fact that I’ve been without edema, protein spillage or blood in my urine for a few years now, I think it’s safe to say that they are healthy and working optimally.

      1. Robyn, that’s phenomenal! I’m so happy to hear you’re not even having trace proteinuria. And of course, with your clinical and laboratory improvement, I certainly wouldn’t advocate a biopsy now. Your response to the dietary modifications is very impressive, and I certainly commend you. It really makes you wonder how many other people would benefit from this. While it’s certainly a commitment, if it works (there may always be a few people for which a particular intervention is unsuccessful) it must be worth it to feel better and be able to decrease or stop the immunosuppressive therapy. I know Dr. Wahl at Iowa is trying to implement similar recommendations for MS with some impressive results, and it would be really nice if this dietary regimen could be discussed with patients as part of their rheumatology visits. Sort of like a multidisciplinary clinic for autoimmune conditions. Unfortunately, a lot of nutritionists still follow the traditional food pyramid scheme, so it would likely have to be a coordinated effort to make sure the proper dietary recommendations are conveyed. Nonetheless, I love hearing successful treatment of a condition that really improves a person’s life without side effects, and the fact that it’s dietary change says a lot about how little we understand the negative effects of the current American diet.

  12. Lisbeth Laursen, Denmark

    THANKS so much for sharing your amazing recovery, Robyn and for posting it here, Eileen. My friend’s son suffer from lupus so will send her the link. So mindblowing what healing can take place once the diet is right! I myself have narcolepcy which was only last year (finally) acknowledge as an A.D. So hoping to see results from my new diet – basically paleo. Really appreciate your blog, Eileen. The success stories keeps the hope of being well alive. Best regards to you both!

  13. This is great information, thank you for sharing. I have been diagnosed with Raynaud’s and have come across this information. It helps knowing others are out there as well. I haven’t tried this diet yet but am very interested.

  14. I am at a loss on where to start for meals…been still on limited foods healing the colon supposedly….honestly I know it is not food that is all good for me….saltines, bananas, apple juice, small amounts of chicken, jello and mashed potatoes. How do I even begin to plan meals….I know that sounds strange but am so scared to try other foods right now. It is also weird to cook since it is only me to cook for.

    1. For ulcerative colitis, there are 2 excellent introduction diets to get you started healing and past the flares: SCD & GAPS. They’re similar to Paleo, but originally designed specifically to help people with UC. Click those links for more information. You want to start with their introduction diets and then move onto their full diets. The food that will soothe, nourish and heal most quickly is their homemade chicken soup. And although it might feel weird cooking for yourself, you’re worth it! Cook large batches of food and freeze/refrigerate in individual portions, for easy eating throughout the week.

  15. I am so tired of doctors and ERs that give me more and more meds and I get sicker and sicker…ulcerative colitis, fibromyalgia, depression/bipolar and Barrett’s esophagus. I refuse to keep seeing doctors! I get nowhere. I do need to have a colonoscopy to be sure there is no more bleeding internally but all these meds are crazy. I thank Eileen for sharing so much knowledge with me.

  16. Just wanted to add a comment here since I have Lupus (SLE) as well. This is very close to what I have experienced with Lupus. I’ve been through the pains and inflammation, mouth sores from Sjogren’s (plus some cuticle blisters), swollen ankles (which finally let me to the ER and my diagnoses) and extreme fatigue – which the hospital visit determined was severe anemia caused by the Lupus.

    I was still pretty bad when I left the hospital, but at least I finally had an answer. Went on Prednisone and Plaquinel (and supplements). I’m still working on weaning off of the Prednisone. It has been 5 months of RESEARCH and strict diet changes (very close to Paleo ). I am doing much, much better. I am cautious. I too worry that I will wake up tomorrow and be back in a flare — but I am also hopeful that I have discovered the ‘cure’. I’m not 100% yet (and I admit I’ve also gone through some massive depression that was as hard to deal with as the initial physical symptoms) but every week is better!
    If you any Autoimmune disease I implore you to give diet a chance. (Gluten-free and dairy-free at the very least). The details are out there!

    Robyn, thank you for telling your story. Reading about the success of others reinforces what I’m doing and gives hope!

  17. Thank you for sharing your story. My husband & I started following the Wheat Belly diet 9 mths ago, which is very similar to yours. My older sister was diagnosed with lupus in the late 90’s and followed the same course of treatment you were on. Unfortunately, she was then diagnosed with ovarian cancer in 2000, and died 18 mths later. I will always wonder if a change in diet would have made a difference with both the lupus and cancer! Best of luck to you.

    1. Darlene, thanks for writing. I’m so sorry for your loss. I wish you and your husband health and happiness.

  18. Thank you a million times for sharing this. My rheumatologist thinks I’m an idiot for trying to heal lupus through diet. Thanks for the inspiration and the encouragement. I’ve been in remission since I went Primal 15 months ago. I got off steroids after being dependent on them for 5 years. This is great validation that I’m not crazy.

  19. An inspiring story. It seems like, whichever way works best, eliminating grains, especially wheat, and processed foods works for a LOT of people. So glad for you and your family. You probably already know this, but FYI, elderberry is a potent anti-viral which might help you stand up to the pre-school and elem. school germs coming home everyday. I don’t know how it affects the immune system, but it has been researched and I can personally attest to it as a way to prevent and shorten viral infections. Thanks for sharing your story!

    1. Thanks for the elderberry advice! I’ve passed it along to Robyn. I have a friend who has an elderberry bush in her yard; I’m jealous! Interestingly, the Gaps Diet (which I’m doing to heal rheumatoid arthritis) has a whole section in the book on the wonders of elderberries. The author says a teaspoon a day will keep all colds and viruses away. Now, that’s powerful.

  20. Wow! Can I just say what an excellent article/interview this is! So informative and inspiring! Thank you very much for sharing your story, Robyn, and Eileen, for posting it on your blog! My good friend’s sister has lupus and I will definitely be sharing this article with her! Many blessings to you both!

    1. Thanks Jill! My hope is to reach as many people as I can. I hope your friend’s sister is able to give this way of eating a try and finds some relief from her symptoms.

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