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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.
Although Michelle’s autoimmune diagnosis (palmoplantar pustulosis) affected only her hands and feet, gastrointestinal symptoms and mental health were a significant part of her journey as well. Panic attacks followed her diagnosis, and it wasn’t until a deep google search revealed natural treatments for PPP that she finally felt hopeful. Today, she grateful to AIP for bringing her the most peace and emotional stability she’s felt in her life.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
In August 2017, I was diagnosed with palmoplantar pustulosis (PPP), a rare and debilitating autoimmune disease that aggressively affects the palms of hands and soles of feet. It is quite painful and uncomfortable – and it never, ever sleeps.
In 2014, I traveled abroad for a long period of time and underwent multiple antibiotic treatments for chronic infections I was having due to e-coli. I believe this is the starting point on the downward spiral to autoimmunity.
In 2015, I started getting gastro intestinal symptoms, right up to my diagnosis in 2017. I felt pain after eating and was constantly bloated, I looked pregnant by the end of the day. I thought it was normal to feel like this after eating, I never even thought that something inside me wasn’t right.
One day out of the blue, I started seeing some dots on my hands. It didn’t scare me too much – because at that moment, I had no idea that I would be hit with the diagnosis of a lifelong chronic illness. I was ‘lucky’, I got to see a dermatologist very quickly following the appearance of the dots, and got a proper diagnosis of my condition. That was pretty much the only thing my derm was good for; the diagnosis. From the moment I walked out of that appointment, my PPP started escalating and spreading aggressively on the palms of my hands and the soles of my feet.
Today, in retrospect, I am able to make the connection between the multiple antibiotic treatments during my travels, my gastro intestinal symptoms and my autoimmune disease, but that was not the case when I first got my diagnosis. This wasn’t even something I considered.
Describe what the lowest point on your health journey was like.
My lowest point was from the moment I got my diagnosis and the doctor shrugging her shoulders and telling me that I need to accept this new reality – just before the moment I started reading books on autoimmune disease and realized there was a possibility of taking my life back.
It was the most scared I have ever been in my life. I was suffering inside and continuously had panic attacks. I could not accept the fact that I would have to live with this for the rest of my life.
Every morning I would wake up and my flares were spreading and taking more ground. I could feel my heart pumping out of my chest, from the fear of having to live this every day for the rest of my life. It felt like I was trapped with no possible escape.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
I was followed regularly by the dermatologist, every time the conversation was the same. I refused to take biologics because they really scared me. The dermatologist could care less about my fears and worries, and it made me feel alone and helpless. There was no empathy whatsoever from my doctor. If she had said the words ‘not my problem’ it would have been the same.
I had read a lot of horror stories on biologics, worsening the condition for many people, PPP spreading from just the hands and feet to covering the entire body. And it was a common side effect – not a ‘one in a billion’ type thing. It was already very emotionally challenging for me to have it on just the hands and feet. I could not handle a worsening of my condition; I could not take that risk.
It was at this very point that on one of my regular and desperate attempts to find a remedy on google, I came upon a book called How To Treat Palmoplantar Pustulosis Naturally written by someone who also had PPP, Asa Karmann. It was on page 4 of the google results pages, the first pages being only from pharmaceutical companies pushing their medication. It was definitely worth the extra clicks to get to that results page. I ordered the book, and when I received it, I read it in 3 hours.
This simple book opened my eyes to what was happening inside of me, and finally gave me the answer I was so desperately searching for. It filled me with hope, inspiration and the strength I needed for what was coming, which was embarking on my healing journey.
I became so passionate and wanted to learn more, so I went on to read more books like The Paleo Approach, amongst others. This book changed my way of life and put me well on my path, steering me in the right direction.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
In May 2018, I started the Autoimmune protocol (AIP) elimination diet. My hands cleared after two weeks – this motivated me to persevere. My feet were not evolving in the same way; it kept flaring, even if I was 100% compliant on AIP.
Five months in, I was still having a hard time digesting foods and absorbing nutrients. I felt famished and weak, and I was losing a lot of weight. It was difficult times. I tweaked my diet because my healing had hit a plateau, and I was not showing any progress on my feet.
After reading the book The Keystone Approach and discussing with a fellow PPP friend who was also healing with diet, I decided to merge the AIP elimination diet with the Mediterranean diet, eliminating most meats as protein and replacing them with fish.
I also decided to consult a functional medicine practitioner, who put me on a protocol for regulating digestion and healing my gut. I started taking digestive enzymes before each meal, and did an 8 week microbial treatment to kill off any possible intestinal overgrowth/candida of some sort.
It took less than one month, my digestion was back on track and nutrients were finally being absorbed properly, my energy levels increased and I gained half my weight back. Not only did I stop feeling pain or bloating after eating, my feet stopped flaring. It was healing right before my eyes, every day I could see it fading more and more, just like my gastrointestinal symptoms were, in sync.
I was able to start the reintroduction phase which lasted for about 10 months, I reintroduced most foods except gluten, grains and processed foods.
If I would have done things correctly from the beginning, I would have suffered a lot less during the protocol. This is where I am so grateful for functional medicine; it was a great complement to the AIP.
What resources have you used on your healing journey so far and how did you find them?
Reading a lot of books! Knowledge is power in beating autoimmune. I became passionate about the power of healing with food and functional medicine. Books from Drs Sarah Ballantyne, Tom O’Bryan, Mark Hyman and Amy Meyers all contributed to my healing. I am so thankful for the information they have made available to us in their books.
Consulting a functional medicine practitioner, who put me on a protocol to regulate digestion, heal my gut, detox my liver, regulate hormones and lower stress and anxiety. The program I was put on did what it was supposed to. I am an advocate of functional medicine and I believe it is the future of medicine for chronic illnesses.
AIP food bloggers who inspired me and made me become the chef I didn’t know I was. I am so grateful for these bloggers who come up with healthy and tasty AIP recipes which so far, all have been easy to make. Cooking with real food is not complicated, and that’s how it should be.
Friends I made in autoimmune communities (Facebook, Inspire), sharing our experiences and tips on fine tuning and troubleshooting our protocol. I would not be where I am today without them.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
I was prescribed steroids on my very first visit with the derm. I was ignorant at the time, I didn’t know much about this cream. It made everything disappear fast – so I thought it was magic. Two weeks later it comes raging back with a vengeance. I researched on steroid creams and found out that if used continuously, it thins the skin causing irreversible damage, making flares worst with time and more prone to infections. When I told my derm I was preoccupied with this, she told me not to believe everything I read on the internet, and to keep using it, making sure I put a lot on even if the bottle says to put a very fine layer on the skin.
After many visits of repeating I will not use the steroids, she insisted I needed to be on biologics. I asked her about diet and she said with conviction that it had nothing to do with my illness; the two were absolutely not related. So I did some research on the different biologics she mentioned. The long list of scary side effects, along with the probability that it would not be effective or yet worsen my condition, and that I would need to try them all out until (or if) I find the best fit, gave me panic attacks and brought me into darkness. I had no choice but to look for another way.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
I never thought I would say or think this, but my autoimmune disease was a blessing in disguise. It put me in a dark place, but it forced me to dig deep, fight and persevere. If I would have never gotten it, I wouldn’t have discovered how to be my best and healthiest self today.
I have never been as emotionally stable, at peace and content in my life. Stress and anxiety no longer inhibit me. I am walking through life now, not running or feeling stressed out. It’s simply smooth sailing. Nothing more; nothing less.
I am now clear of PPP, following a complete Paleo diet, and I do not feel deprived – I have adopted this new lifestyle.
I have found true balance in this chaotic world and I feel lucky – even though, technically, it’s not luck – I worked hard for it. I am truly grateful for the Autoimmune protocol.
If you want to learn more about Michelle’s heath journey, you can follow her on Facebook.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.
Last January, at the recommendation of the Internal Medicine physician managing my Hashimoto’s Thyroiditis, I met with the Registered Dietician trained in the AIP Protocol. In hindsight, I should not have dived off the high board into this, but I did. I soon found out that coconut milk, worse, coconut cream, coconut oil gave me serious diarrhea. I was not digesting my food, much came out, almost as it went in. The AIP Dietician was no help at all, did not even respond to my email requests for 3 weeks, for the follow up that was included in the cost of my initial appointment with her.
I stuck the elimination phase out and the antibody levels in my blood work dropped considerably, to the point where the Dr. lowered the synthroid dose. The very loose bowels movements, while a little improved, continue. I do not have the choice of another AIP Dietician, nor do I know if a Functional medicine specialist even exists in Quebec. This has not been a pleasant journey at all. Over the Christmas holidays, I got off track, it was that or remain socially isolated because of what I can and cannot eat. At 75 yrs of age, social isolation is the last thing I need. You all make it sound so easy, it has not been for me. I have added plain white basmati rice to my diet to quell the diarrhea. Just got an instant pot and am learning to use it as bone broth soup has been my staple morning, noon and night.
This is one heck of a lot of work….any suggestions regarding the “no can use coconut milk” since most of the recipes I have downloaded from your site contain this and other things I do not digest well.
We’re glad you had success in lowering your antibodies! You can find AIP Certified Coaches that we personally trained & who are in Quebec here: