Real-Life Stories of Reversing Autoimmune Disease
In every podcast episode, I ask my guests to share their personal healing story before we dive into the podcast topic, but there’s something especially inspiring about the episodes that are dedicated 100% to healing stories. This is the third such episode, and they remain some of the most popular podcasts to date.
In the introduction to every podcast, I say this: “While there is no cure for autoimmune disease, the choices we make every day can have a powerful impact on how we feel.” That’s what reversing autoimmune disease is all about: taking our health into our own hands, reducing our symptoms and reclaiming abilities we thought we had lost forever.
Today, I interview five people, each with a different autoimmune disease than those shared in the other Healing Stories podcasts: Episode 1 and Episode 14. When it comes to reversing autoimmune disease, there is no one definition of success. Some people have achieved a medication-free remission. Others have reduced their medication substantially. Most importantly, everyone has reduced their symptoms and reclaimed vitality and joy in living. We celebrate every healing journey.
Listen to the Show
- Subscribe to my podcast through your favorite podcast app: iTunes, Stitcher, Google, TuneIn, Spotify, Amazon, etc.
- You can also listen to the episode right here through the player below, and if you subscribe to my newsletter you’ll get notified of future episodes.
Podcast: Play in new window | Download
Show Notes
- Intro (0:00)
- Thank You to our Podcast Sponsor – Paleo on the Go (2:07)
- A frozen meal delivery service, they have a large menu of items for the paleo autoimmune protocol (AIP).
- Use the code PHOENIX for 10% off your first order.
- Tracy’s Healing Story (2:36)
- Tracy Rupp has Mixed Connective Tissue Disease (with elements of Scleroderma, Polymyositis and Secondary Raynaud’s.)
- Her symptoms included cold/white/numb fingers, muscle weakness body-wide, difficulty with stairs, repetitive falls, and difficulty swallowing. Her immune system was attacking her muscles, organs, connective tissue and skin body-wide.
- It took her 5 years to get an accurate diagnosis. Her primary doctor told her to stop researching her symptoms on the internet and to trust him that nothing was wrong. She finally went to the Medical College of Wisconsin, and they diagnosed her very quickly.
- Medication helped her symptoms, but after a while, she started researching alternatives, with the goal of reducing or eliminating her medication. She found Terry Wahls’ Ted Talk and the Phoenix Helix blog, and changed her diet in January 2014.
- Now, she has energy and strength again. She’s golfing in tournaments, is a very active grandmother, works full-time, and swallows without difficulty. She’s not 100% better, but life is full and fun again.
- At diagnosis, Tracy’s CPK enzymes were elevated to 5800. Normal is below 180. She was put on prednisone, methotrexate and CellCept, and that number dropped down into the one thousand range but it plateaued there. When she started the paleo autoimmune protocol (AIP), her numbers dropped into the normal range. She is now medication-free. Update 2017: Tracy did decide to go back on medication. She feels healthiest using a combination of diet, lifestyle and medicine.
- Update 2019: Tracy now has a blog called Healing Autoimmune Disease with Faith, Food & Support.
- Jo’s Healing Story (16:22)
- Jo Romero has Psoriasis.
- At her worst, she had psoriasis rash patches body-wide, including her face, ears and scalp, so they were impossible to hide and hard on her self-esteem. She was 15 years old when they first appeared, and while her friends were wearing make-up and dying their hair, she was told to avoid those things. It was very isolating. She also had a lot of anxiety, which made the psoriasis worse, as well as digestive issues: chronic indigestion and heartburn.
- She had psoriasis for 25 years before she started the AIP in 2013. In the past, she had tried steroid creams and prescription shampoos, without success. The AIP was the first thing that made a positive difference. She felt better emotionally and digestively before she noticed improvements at the skin level. It was a full year before she saw dramatic healing in her psoriasis. However, because she felt better on the inside, she knew she was on the right track.
- Now, her psoriasis is 95% healed, with only one small patch remaining under her eyebrow. Her anxiety is also gone, as are her digestive issues.
- Stress management was the biggest key to her healing. When her stress is managed, she finds the diet easier to follow, and sleep comes easier as well. Yoga is her favorite method of reducing stress.
- Sugar is also a big trigger for her – even natural sugars allowed on the paleo diet can cause her psoriasis to flare.
- Update 2020: Jo has retired from food blogging and now has a British History blog. She’s also an artist, and you can see her work on Instagram.
- Dora’s Healing Story (30:21)
- Dora Siah has Graves’ Disease.
- Graves disease causes hyperthyroidism (overproduction of thyroid hormones). The symptoms that led to Dora’s diagnosis were over-perspiration, hand tremors, a rapid heartbeat (she felt like she’d returned from a run even when she was sitting still), and feeling “jittery” all the time.
- She declined the option of radioactive iodine therapy (where the thyroid is intentionally destroyed). Instead, she was prescribed two medications: a beta-blocker and a thyroid-suppressing hormone. She tried going off the drugs 3 times, and her symptoms always returned.
- Now, she’s been on the AIP for 16 months and is currently reintroducing foods. She combined medication plus diet for the first year. A goiter that didn’t respond to the medication disappeared after 2 weeks on the AIP. That spurred her to continue. Her metabolism is now much better controlled. She has occasional mini flares, but nothing debilitating.
- The lifestyle measure that’s made the biggest difference for her is Simplicity Parenting.
- She is currently off medication, hoping her symptoms don’t return this time. Update: Dora was able to be medication-free for 2 years with the help of the AIP. Then, she experienced a Graves’ relapse that medication helped to resolve. It’s important to remember that medication-free isn’t the most important goal. Living our best and healthiest life is the true goal. Sometimes medication helps us do that. (Resource podcast: Medication Decisions.)
- Dora is the former author of the blog Provincial Paleo.
- Freyja’s Healing Story (40:55)
- Freyja Eldridge has Uveitis.
- Uveitis is an autoimmune inflammation in the eye which can cause severe pain, but Freyja didn’t experience any symptoms – her eye doctor discovered the inflammation during a routine exam. Because the condition can lead to blindness, treatment was started immediately.
- She was prescribed oral steroids for 6 months which had no effect on the inflammation. She then received steroid injections directly into the eye, which also had no effect. Her doctor then wanted to put her on immunosuppressant medication.
- Freyja didn’t want to go on stronger medication, so she started the paleo autoimmune protocol. When she returned to the doctor 3 months later, the inflammation was gone. Ironically, the doctor attributed the success to the steroids “kicking in” even though she had stopped taking them a year earlier.
- After that appointment, Freyja ate whatever she wanted for a week as a “reward” for making it through 3 months of strict AIP. Her body immediately let her know that was a mistake. She experienced headaches, fatigue and flu-like symptoms followed by a return to chronic back pain that she didn’t realize had disappeared on the AIP. She also developed a rash on her arms and knees that took 4 weeks back on AIP to resolve. This was the proof she needed to realize that the AIP wasn’t a temporary diet for her.
- Barbara’s Healing Story (50:42)
- Barbara Breitsameter has Parkinson’s Disease.
- While Parkinson’s isn’t an autoimmune disease, its progressive nature has many similarities.
- At her worst, Barbara had severe tremors, difficulty walking, she lost her ability to write and had to close her business as a professional photographer. Daily life became very challenging, and her husband had to help her tie her shoes.
- It was actually her primary care physician who recommended The Wahls Protocol. The doctor was actually following it for her own health. Barbara was skeptical at first but trusted her doctor, so decided to buy the book and give it a try.
- Within a month on Wahls Paleo, her tremors started to reduce, she had an easier time walking, and daily tasks became easier as well. Within two months, she went to see her neurologist who reduced her medication. After 14 months on Wahls Paleo, her medication has been reduced by 50%, and her neurologist said she is the first Parkinson’s patient she has ever had whose symptoms improved instead of worsened. Her neurologist is now researching The Wahls Protocol. Barbara’s stamina has also returned, and she’s back to work again as a professional photographer.
- Over the holidays, someone brought Christmas cookies into her home, which Barbara found too tempting to resist. The result of eating them was an increase in her Parkinson’s symptoms. This reinforced the power of the Wahls Paleo diet, and she learned that certain foods must simply stay out of her house, so she’s not tempted to go off-diet again.
- Summary (58:29)
- This is the 3rd Healing Stories episode, and you can find the others here. I feature a wide variety of diagnoses, but even if your diagnosis isn’t featured, please know that these stories still apply to you. Autoimmune diseases have much in common, which is why they are treated similarly by conventional medicine, and why the paleo diet and lifestyle benefits so many.
- Many of my podcast guests I meet through social media. Be sure to follow me on Instagram and Facebook, to join the conversation.
- Resources:
- Outro (1:00:16)
- Eileen (your podcast host) is the author of multiple books, written to help people thrive with autoimmune disease. Learn more on the Books Page.
- If you like this podcast, follow or subscribe through your favorite podcast app. You can also subscribe to Eileen’s biweekly newsletter.
- Check out the entire archive of podcast episodes.
You May Also Be Interested In
Spreading the Word
If you like the podcast, please leave a positive review in iTunes. It would mean the world to me, and also helps others find the podcast. Here are some quick instructions using your iPhone:
- If you are already subscribed to my podcast: (1) Click the purple podcast icon. (2) At the bottom of the screen, click Library. (3) At the top of the screen, click Shows. (4) Click the Phoenix Helix podcast image. (5) Scroll down the page, and you’ll see Ratings and Reviews. Scroll down a little bit more and click on Write a Review. This will bring up the review screen. Tap 5 stars (if you love the podcast), and then click in the title box, and it will bring up the keyboard. Enter a title and short review. (6) Click Send in the upper right corner. (7) Thank you! Positive reviews give the podcast a higher search ranking in iTunes, helping people find it and letting them know it’s a quality podcast and worth their time to listen.
- If you haven’t subscribed to my podcast: (1) Click the purple podcast icon. (2) In the lower right corner, click the magnifying class. (3) Type Phoenix Helix in the search box. (4) Click the podcast cover in the Show list. (5) If you’d like to subscribe, click the + sign at the top of the screen. (6) To write a review, scroll down the page, and you’ll see Ratings and Reviews. Scroll down a little bit more and click on Write a Review. This will bring up the review screen. Tap 5 stars (if you love the podcast), and then click in the title box, and it will bring up the keyboard. Enter a title and short review. (7) Click Send in the upper right corner. (8) Thank you! Positive reviews give the podcast a higher search ranking in iTunes, helping people find it and letting them know it’s a quality podcast and worth their time to listen.
Do You Have My Books?
thanks my son also following aip now 20 months and his antitpo reduce but in last 30 days i have given 3 times egg yolk,and after 3 time within less then 72 hours he have stomach pain. so it can be egg yolk.
and i am thinking also whether to start methylation or not he have some snps.if u can guide or suggest me on that.worried about to much supllement
Hi Suryabhan. Yes, that does sound like he is intolerant to egg yolk, and knowledge is power, so it’s good for you to know. The reintroduction process is an experiment where you learn which foods he can add back into his diet without a problem, and which he needs to continue to avoid. So, you’re doing the process perfectly. As for methylation, wait and listen to my next podcast. It will go live next weekend and the topic is MTHFR. You definitely want to be careful with supplementation, because having SNPs doesn’t equate to having problems, and you can over-supplement. I am not qualified to guide you, but here’s a directory of people who are: https://seekinghealth.org/physician-directory.
Is there any story with Complex regional pain syndrome (RSD)?
No, Gabi. However, most chronic diseases have similar root causes, and diet and lifestyle changes often make a big difference regardless of diagnosis. It’s definitely worth trying. You might be the success story that will then inspired others with your same diagnosis. Wishing you pain relief and good health.
Eileen, I wanted to take a minute to thank you for providing the summaries in your podcast posts. I’m deaf, which makes it impossible to “listen” to the casts. The summaries do a wonderful job of identifying the important parts of the interviews. While I’m not getting the full benefit of the interviews like everyone else, I still learn a thing or two every time. Thank you for a great blog. You’re a hero.
CS, thank you so much for writing! It makes me feel even better about the time I invest in these show notes.
Hi Eileen, I’ve been catching up on all of your podcasts, believing that my husband’s Fibromyalgia was an autoimmune disease. But I recently heard that it is not autoimmune which has left me a bit confused. We’ve been easing into the AIP, but now I am wondering if another form of a paleo diet would be better. Have you heard anything about Fibromyalgia and what is a good direction to go in for it? Thank you so much for your podcast. I have learned so much through it and also gained a lot of encouragement.
I always recommend people start with regular paleo first and then only progress to the AIP if necessary. Some people reach remission on paleo alone. Others need to identify the food intolerances that the AIP unmasks. Whatever you choose, be sure to focus on nutrient density, sleep and stress management also, as they are all important at reducing inflammation. Wishing your husband wellness, Monica!
Thank you!
My husband has severe Scleraderma and I was wondering if Traci would be willing to talk to us. I am desperately looking to talk with someone who has it and with trouble swollowing as one of they symptoms. She sounds so much like my husband and I would do anything to talk to her for some advice. Thanks
Heidi, I will forward your email address to Tracy. She loves encouraging people, so expect a reply from within a week.
Thank you for this episode. I love your podcast. It was wonderful to hear the story of the woman who had success with healing her uveitis. I also have a very rare form of posterior uveitis and had already lost central vision in one eye by the time I was diagnosed. I started AIP about a week after diagnosis (I was already interested in “real food” and paleo, so I was already aware of the diet even before I had an autoimmune disease.). I have been on high dose prednisone and CellCept with lots of ups and downs over the last year. I was finally having a good streak with tapering the prednisone without having a new increase in inflammation. Then I got to a certain level of prednisone and the inflammation came back. I started to feel like the diet and lifestyle changes weren’t working for me (been at it for 8 months). Having a rare autoimmune disease means I haven’t really heard of people using this diet for this particular condition. Hearing a story of it working for someone with the same thing is really inspiring. You also made a comment that healing can be a process of having some set backs but that it’s still an overall upward trajectory, and that really inspired me as well. Thank you for all that you do!
Andrea, that’s exactly why I strive to include different diagnoses with each episode. I’m so glad this was inspiring to you. I don’t know if you saw Jeanne’s comment above, but apparently uveitis is often linked with ankylosing spondylitis, and sometimes that can be the missing link in understanding what’s happening in the body. Many people with AS find starch inflammatory, for example. If you’d like to learn more, read my interview with Charles Comey, who follows a starch-free diet to manage his AS.
Thank you, Eileen! Yes, I saw that comment and anterior uveitis is often associated with AS. I have posterior uveitis, but I have the HLA-B27 gene that is associated with both anterior uveitis and AS, so I am definitely at risk. I don’t have any symptoms so far, but it is always good to have more information. I have listened to the interview with Charles Comey and found it very interesting. Thank you for all you do!
I love the healing stories episodes. They’re so encouraging. For the woman who spoke about uveitis, I wonder if she has had any genetic testing done. A lot of times uveitis is a co symptom of ankylosing spondylitis. As someone with AS, it made me think of this because she also mentioned having back pain. AS is very under-diagnosed, in women especially, which is what led me to write this. 90%ish of the time, AS patients will have the HLA-B27 gene & the klebsiella bacteria in the gut. Just food for thought . Thx for all you do in the AI community!
Excellent insight, Jeanne. I’ll pass that along to Freyja.
Thanks Eileen! As I was reading the other threads, you mentioned starch to Andrea. I might mention, if it is a help, that although I had been on AIP since January (loosely, prior to that while I was very sick), I wasn’t feeling as well as I thought I should. Through comments and posts on the AIP FB page, I learned of Carol Sinclair’s NSD book. Reading her story of AS and associated IBS & IBD was like reading my life story! I immediately gave up starch! After all, I’d already given up so much, this was really no stretch 😉 My IBD (colitis) symptoms disappeared the next day! (death to klebsiella, I suppose) I am 3 weeks in today and haven’t felt so good in my gut in over 35 years!! I am not even kidding. My AS symptoms are coming along, but not gone yet. I’m hopeful though as I stay on a NSD/real food diet ;). After so many years of going undiagnosed & misdiagnosed, I feel like this book (through the AIP FB page, totally validated me & upgraded the quality of my life and health several levels!) AS is so misunderstood in women because it presents much differently than in men. It’s a shame that women have to suffer for so long & feel like they’re crazy for pursuing answers and a diagnosis – with AS, and AI disease in general. Thanks again for all you do!!
Thanks so much for sharing your experience, Jeanne! May you continue to feel better and better. 🙂
Another informative and uplifting podcast. I am currently in the thoes of healing (only a few months in) and like everyone else, I have good days and bad days. I am in my 40’s and have battled severe eczema my entire life. I am now on AIP and working with a naturopath and happily on the road to recovery, although I know it may be a long road given how long I’ve been sick. I would love to hear an eczema healing story in the future 🙂 Keep up the great work Eileen!
Thanks for sharing your story Melissa. Have you listened to the Autoimmune Skin Conditions podcast? I think you’ll find that one inspiring, too.
I love these healing stories – they encourage me to keep up with the diet and lifestyle! Everyone who has to eat differently knows how hard it can be. Waiting for results to appear in our bodies takes a lot of patience. Hearing about psoriasis taking a whole year to clear up gives me hope that some day my vitiligo spots may go away too! I can see some improvement, after years of being gluten free, then paleo, then AIP. I have been trying to reintroduce things slowly, but I am not getting far. I am going back to strict AIP, and starting over since I have been off-plan I dont feel so good anymore. The toughest part is psychological: I just need to accept that I cannot eat certain things anymore.
I agree – the emotional and mental aspects are woven throughout my journey too. I’ve made progress, but I’m certainly not perfect when it comes to acceptance. But I try!
Grateful for you & your posts! Thankful today for encouragement I needed so badly…..
You’re welcome, Sunny!
Thank you so much for these, very helpful! I can so relate to Tracy’s experience waiting for an accurate diagnosis and what we’re sometimes told in the process, and also Jo’s healing story about psoriasis (I am on a similar path with psoriasis and psoriatic arthritis and the AIP), so thankful to have found it and so many inspiring people along the way. Thank you!
How are you feeling, Felicia? If you were to give it a % improved, where are you in your healing journey. I know you’ve been working hard at it!
Eileen,
Thanks for asking, and I have made some remarkable improvements in the last year, not sure on a % level, but my psoriasis has cleared to its best level ever with just a couple spots at a time now, hooray! Hoping for similar results with this severe pain (diagnosed as psoriatic arthritis), can be such a challenging issue while trying to support ourselves, but healing is the intention. I did finally have a disability hearing in Sept, have you written about that process and your thoughts? Not the most supportive process either, so just curious. I appreciate all the inspiration and support here, thanks so much!!
Hi Felicia. I’m so happy for you that the psoriasis is clearing so well, and I hope the pain resolves next. I have no experience with the disability process, but I know V. Capaldi (Paleo Boss Lady) went through it, and she might have some insights for you.
Thanks for the response, very helpful, and I appreciate the resource. Hoping I’m on a healing spectrum here and won’t need disability!
Dear Eileen, thanks so much for this post. It gives me a new hope as Im also struggling with a few AI ailments. Ive been on AIP a year and slowly feel better, been stumbling upon frustrations all the way , though…
Healing can sometimes be a pattern of two steps forward and one step back, but it helps to remember you’re still moving in the right direction.