Episode 191: Healing Stories 9

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Real-Life Stories of Autoimmune Resilience

If you’re a regular listener of my podcast, you know that I start every year with a Healing Stories episode. It features back-to-back interviews with autoimmune warriors just like you! I ask them to share their journey from rock bottom to reclaiming a vital life. In this episode, we talk about rheumatoid arthritis, alopecia, myasthenia gravis, and also autoimmunity in general. Everyone’s story is unique, but we also have so much in common. Whatever your diagnosis, I hope these stories resonate and inspire.

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Show Notes

  • Intro (0:00)
  • Celebrating 2 Million Downloads! (1:51)
    •  I want to thank all of you who listen to my podcast and share it with others. Thanks to you, this podcast passed a milestone in 2021: 2 million downloads!
    • To celebrate, I’ll be hosting a big giveaway on my website on 1/14/22 and it will be open for 2 weeks. I’ll choose the winners on 1/28/22. 
  • Thank You to Our Podcast Sponsor – ShopAIP (2:37)
    • Happy New Year! Many of you are doing an AIP Reset, or trying the Paleo Autoimmune Protocol for the first time. ShopAIP is here to make that easier for you! They sell hundreds of shelf-stable pantry items for the elimination phase and products labeled by reintroduction category as well. To give you some examples of what’s available, they sell AIP-friendly spice blends, nightshade-free sauces and condiments, quick proteins like meat bars and canned seafood, cooking and baking ingredients, and they also have a variety of both sweet and salty snacks. They even sell AIP pasta!
    • If you’re a first-time customer, use the code PHOENIX for 10% off your order. Purchase here.
  • Kris’ Healing Story (3:45)
    • Kris King has myasthenia gravis, an autoimmune disease that interferes with the communication between nerves and muscles and can cause disabling muscle weakness bodywide.
    • Her symptoms began after the birth of her first child at the end of 2018. She didn’t know what they were at first, and thought maybe it was just a side effect of pregnancy and postpartum. At her worst, she experienced blurry vision, slurred speech, severe weakness in her arms and hands, spontaneous falls (one of which caused a mild concussion), and the inability to smile. She felt like her body had turned against her. As a new mother, she also felt guilt and shame that there were times she couldn’t hold her baby, because her son was too young to understand.
    • She made an appointment with her OB-GYN, and her doctor dismissed her symptoms as depression and referred her to a psychiatrist. Her mother encouraged her to see her primary care physician, and thankfully he had another patient with myasthenia gravis and was familiar with the symptoms. Even so, she had to push for the antibody tests to receive a diagnosis.
    • She implemented diet and lifestyle changes alongside medication. The paleo autoimmune protocol was very helpful in reducing her inflammation. She also experienced a mindset shift where she no longer sweats the small stuff. Her faith has been a source of strength as well. As a new mother, she hasn’t been able to get as much sleep as she’d like, but she does sit down and rest as needed during the day, which is something she never did before. The other big change was moving closer to family, for more help and support.
    • Now, her symptoms are much milder and only arise when she’s fatigued or under stress. They’re no longer disabling. She sees them as messages from her body that she needs to take a break.
    • Medication has been part of her health protocol as well. At diagnosis, she was prescribed immunosuppressants and Mestinon (a medication that creates synthetic neurotransmitters that restore communication between the nerves and muscles.) She worked with a naturopath to find supplements that support her immune system health, and has been able to discontinue the immunosuppressants and lower the amount of Mestinon she needs (she used to take it three times daily, and now she only takes it as needed.)
    • Her advice to anyone with autoimmune disease (diagnosed or not) is to be your own advocate.
    • You can connect with Kris through Instagram or Facebook where she shares AIP recipes and travel tips.
    • Resource Podcasts:
  • Thank You to Our Podcast Sponsor – Sip Herbals Coffee Substitutes (26:05)
    • For many people, one of the hardest things to give up on the Paleo Autoimmune Protocol is coffee. Sip Herbals is a small business started by two women who understand! They personally love coffee, but learned that coffee doesn’t love them back. So, they created a delicious substitute and started Sip Herbals to share it with others.
    • Their original herbal coffee is made from just three organic, caffeine-free ingredients: roasted chicory powder, roasted carob powder, and roasted dandelion root powder. It creates a rich, flavorful blend.
    • Now, they’ve expanded their line to include four delicious flavors: Salted Caramel, Dirty Chai, Mocha, and their newest flavor – Vanilla! You won’t find any artificial ingredients in these mixes. Instead, they’re flavored with real herbs and spices, and they’re all AIP-friendly.
    • To learn more, visit SipHerbals.com and use the code PHOENIX for 10% off your first order.
  • Kim’s Healing Story (27:33)
    • Kim Lam Friesz has rheumatoid arthritis, an autoimmune disease that attacks the lining of the joints. She was diagnosed in 2017.
    • Her symptoms developed slowly, and at first she simply thought they were signs of aging. She had chronic fatigue and slept a lot. Then, she started having morning stiffness so severe she needed to massage her hands, elbows, feet, and limbs in order to get out of bed. Her joint pain escalated so she could no longer exercise, and soon had trouble with daily tasks around the house. She could no longer lift the cast iron pans she loved, and she feared meeting new people because it hurt to shake someone’s hand. Her mood also suffered – she felt grumpy all the time.
    • She went to her annual physical and her doctor recognized the RA symptoms, especially the symmetrical joint pain (on both sides of the body). They ran antibody tests which came back positive for Anti-CCP, one of the indicators of rheumatoid arthritis. She was referred to a rheumatologist and was diagnosed quickly. She started high-dose immunosuppressants as well as high-dose prescription ibuprofen.
    • She knew she wanted to take an active role in her health and started researching diet and lifestyle changes. The first foods she removed were nightshades and grains. Then, she found the AIP and did the elimination phase for 30 days. Her pain dropped from a 10 to a 5 within weeks. Now, her pain stays low (around a 2), and she’s been able to return to the activities she loves.
    • For Kim, the diet changes weren’t just about which foods she removed, but also the foods she added. She started focusing on nutrient density, incorporating more protein, lots of vegetables, organ meats, and bone broth. Her chronic fatigue improved dramatically when she made this change.
    • Now, she still takes medication, but it’s a very low dose. She’s also been able to reintroduce most foods back into her diet. She follows an 80/20 protocol – eating paleoish 80% of the time, and enjoying non-AIP and non-paleo foods occasionally. She notices a cumulative effect. Eating them once in a while is fine. Eating them daily can lead to inflammation. Note: immunosuppressant medication sometimes improves food tolerance by calming the immune system. She’s now very in tune to her body and if she feels any symptoms, physically or mentally, she’ll do an AIP reset.
    • Kim also takes some supplements: vitamin D and fish oil.
    • Kim is a health and wellness coach, and you can connect with her through Instagram or Facebook.
    • Resource Podcasts:
  • AIP Resources: Eileen’s Book and Cookbook (44:28)
    • Are you new to the Paleo Autoimmune Protocol, or just looking for resources to make it easier? I have written two resources to help!
    • A Simple Guide to the Paleo Autoimmune Protocol is all of the essential information in a package small enough to fit in your purse. It’s simple enough that even someone with brain fog can understand, and written like a conversation between friends. It’s even available as an audiobook!
    • The Paleo AIP Instant Pot Cookbook has 141 recipes to help you eat well on the AIP while saving time in the kitchen!
  • Deepa’s Healing Story (45:42)
    • Deepa Berar has alopecia areata, an autoimmune disease that causes hair loss. She also has primary ovarian insufficiency.
    • In 2016, she experienced rapid onset of alopecia areata, losing 70% of her hair over 5 months. This included overall thinning of her hair and 5 large bald patches. She couldn’t hide the hair loss, and it was a traumatic experience for her. Part of the challenge was feeling like she couldn’t reach out for support. She comes from a culture that doesn’t talk about problems and she didn’t feel like she could talk to her parents. Her best friend has a daughter with cystic fibrosis, and compared to that, Deepa felt shallow to complain about hair loss. So, she felt very isolated. However, when she did finally reach out to her best friend and her parents, they were all extremely supportive. Now, she feels blessed by her support system (including her husband).
    • Deepa was able to regrow her hair. The diet and lifestyle changes that made the biggest difference were (1) the Paleo Autoimmune Protocol, (2) Stress Management (including Meditation, Yoga, and Walking), and (3) Supplements that contained nutrients that support hair growth. (If she had to choose one supplement to recommend, it would be Biosil.) She shared videos of her hair growth journey on her YouTube channel.
    • Primary ovarian insufficiency (POI) is premature menopause (before the age of 40). Deepa got her first period at age 12, continued to get regular menstrual cycles for a year-and-a-half, and then stopped. She was diagnosed with POI at age 15. At that time, she was put on the birth control pill to stimulate artificial menstrual cycles. She took the pill for almost 30 years. Recently, she learned that POI may have an autoimmune component. And while it was assumed that eggs don’t survive POI, now it’s believed that eggs may still be present, and she may be able to restore natural menstruation. She’s working with a functional medicine team with that goal. Part of the program is an anti-inflammatory diet. During the pandemic, she ate a lot of foods she wouldn’t have chosen otherwise. She recently did an AIP reset and is now following a regular paleo diet. She can feel a huge difference both physically and mentally with gluten, dairy, and soy removed from her diet.
    • She’s still in remission from alopecia, but when she went off birth control with the goal of healing POI, she started experiencing hormonal hair loss rather than alopecia. She has faith that her hair will regrow. Her experience is that hair loss is a sign of a body out of balance, and if you find the root cause, the hair will come back. Not always, but often.
    • You can connect with Deepa through her website. She’s also on Instagram, Facebook, and has an active YouTube Channel.
    • Resource Podcasts:
  • Other Healing Stories Episodes (1:04:40)
    • This is the 9th 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 Autoimmune Protocol 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.
  • Outro (1:05:43)

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3 comments on “Episode 191: Healing Stories 9”

  1. M4deike

    I just listened to Kris talk about MG in the Resilience episode #9. My jaw is still on the floor. I have had Lambert-Eaton Myasthenic syndrome LEMS) — MGs sister illness — since 2006. I take Mestinon and Rizurgi (a 3,4-DAP). Originally I was misdiagnosed as having MG and so was on Imuran and Mestinon for two years, which did nothing for my weakness. The doc also removed my thymus gland, which in retrospect was completely unnecessary and aggravated the LEMS. In 2008, I sought a second opinion and was rediagnosed with LEMS after the new doc gave me a simple, but specific blood test and found significant amount of VGCC antibodies in my system. I totally relate to the diagnostic struggle, and the anxiety, fear, depression, and falling!!!

    I have taking a miracle drug (Rizurgi) since 2008. I take every 3 hours while awake and cannot take more than 10 tablets a day. However, this is life altering medicine, the difference for me between being able to work as a trial lawyer and high school running coach, and being barely able to breathe.

    The mom-&-pop company that makes the medicine however has been pushed around, for the last 3 years, sued and threatened by a corporation that copied the mom-&-pop’s (unpatented) formula that they had been supplying worldwide (and at no cost) for more than 20 years under the FDA’s Compassionate Use protocol. Three years ago, this corporation copied mom-&-pop’s original formula (3,4-DAP), added a preservative, and used it to apply to the FDA for Orphan Drug Status. The FDA granted ODS to the corporation because it was first across the line with its application. But there are numerous problems with the corporation’s version, most critically among them is how less effective it is against the LEMS symptoms, the side effects, and to some people, the serious allergic reaction it causes. Fortunately I’ve been able to get the ordinal, life-saving medicine from mom-&-pop … until yesterday. I just learned that federal court of appeals has affirmed the FDA’s original award of ODS to the corporation, and Mom-&-pop will have to cease distribution in the US immediately.

    Needless to say, I am devastated and frightened. I have been scouring resources in search of a dietary protocol that could help reduce inflammation, reduce symptoms and reduce my dependence on the medication. I know them all but could never adhere. Last week, I signed up with Dr Will Cole’s 4-month long autoimmune health reset. I’m a week in, and my digestive issues are already clearing up but I really am looking for an abatement of the LEMS symptoms. In addition to food as medicine, I’ve been trying to figure out the active ingredient of the miracle medicine and research possible, natural alternatives. I just had a discussion about the likelihood of this last night.

    This morning, I tuned in and heard Kris tell my story (albeit not the pregnancy part, but every other thing, the falling, the facial drooping, the misunderstanding from others, smart and professional others … who should have been more curious). She was spot on, and very generously even in her description. I was riveted to my speaker.

    I used to listen to Phoenix Helix years ago but then, as with all things, I gave up. I don’t know what made me find you again, download this episode and then listen to Kris this morning. But as you can imagine, I am beside myself with shock and awe, and profound gratitude. I am now motivated to keep the reigns tight on my adherence to Dr Cole’s protocol (basically the GAPS diet at first). And equally important, I feel validated and encouraged to look for natural alternatives to the active ingredient in the medication. Not that I’ll be able to cure all my ailments immediately, but maybe in time, I’ll cure some of them, and recover some part of my former health and vitality.

    From the bottom of my heavy heart, thank you, both, Kris and Eileen. You made an enormous difference today for at least one very grateful gal. ♥️♥️♥️♥️♥️

    Reply
    2. Kris King

      Hello! First, please forgive my sincerest apology for just now seeing and responding to your comment. I am so grateful that the interview was helpful to you in any way. Funny, as I read your story I thought about Dr. Cole (her story is also amazing!!) and then you mentioned her. Yaaay and good for you!! Yes, I would stick with her protocols and you’ll eventually find your own rhythm and what works for you. It’s not overnight, but I do truly believe you’ll see that, overtime, as your inflammation decreases and energy increases (with the nutrient density, etc), that there will be some progress toward the desired health quality. Again, I am truly so happy if our podcast touched and encouraged you in any way. I recently spoke about how there is impact in sharing your story and I was even inspired by hearing yours on this comment. Eileen, thank you so much again for having me on & for the opportunity to share my story with your listeners. God bless!

      Reply

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