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 Wellness, 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.
Lyndsey’s journey to recovery has been slow going, which makes her turnaround even more inspirational. When her doctors couldn’t fit her symptoms into any type of box, she received multiple incorrect diagnoses before finally finding the rare condition that truly fit her symptoms. Now, armed with information and a healing protocol that works, she’s once again optimistic about her future.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I have been diagnosed with systemic Poly Arteritis Nodosa (PAN), and it took four years and two serious flares before I had a name for my health issues. The first time I remember experiencing symptoms that caused me to seek medical attention and investigation was 2012 at 28 years old, but honestly I believe my symptoms started in my late teens to early 20s.
My symptoms include constant low grade fevers, night sweats, weight loss, anemia, severe muscle and joint pain due to PAN ulcers that tend to cluster around all of the joints in my lower extremities, particularity my ankles and feet, general malaise, migraines, constant diarrhea and urgency. I was able to function, I worked and had a full-time course load at school, but I knew I was slowly losing my quality of life.
In 2012 my symptoms were becoming overwhelming, so my gastroenterologist sent me for numerous tests. He believed I had ulcerative colitis and the ulcers on my legs were erythema nodosa, and my symptoms persisted for nearly a year. That year was one of the hardest of my life, I truly believe I became I different person, I was so terrified, sleep deprived, and disoriented. During this time of numerous appointments and tests, I was trying some things on my own. I was lucky enough to be raised by a mother who not only taught me that what I put into my body matters, but also that food can be medicine. I tried cutting out dairy and gluten (because I knew they were inflammatory foods), I went off the birth control pill, and I started tracking my food intake and symptoms everyday.
Finally, after my mom pushed me too, I booked an appointment with my Naturopath, Dr. Steven Jones. His experience led him to believe I had leaky gut symptoms and possible food sensitivities. I had myself tested for the 95 most common foods and I was so shocked by the results; I had sensitivity to numerous foods! I IMMEDIATELY cut out everything I had sensitivity to (dairy, gluten, eggs, beef, pineapple…etc.); I like to say this was my half waypoint to becoming AIP (Lyndsey version 2.0). I was still eating some grains, nightshades and sugar, but my symptoms resolved within 8 weeks!
Even though my symptoms were under control, I remember waiting for test results and worrying about my possible diagnosis, and feeling so let down and frustrated when my gastroenterologist diagnosis was “self limiting ulcerative colitis”, and told me to come back when my symptoms return. Just for the record, “self limiting ulcerative colitis” doesn’t even exist!
I went three years without any symptoms — THREE YEARS! Then 2016 rolled around, I was desperate to get my iron levels up as my body was not absorbing any supplements, and I thought it had been three years so maybe it would be okay to try eating beef (a sensitivity of mine). I ate six ounces of organic grass-fed local beef and within 4 hours the PAN ulcers started popping up. I think deep down inside I was really hoping it was just leaky gut and food sensitivities, but when the ulcers popped up so quickly I knew I had an autoimmune issue and it was time to figure out what I was going to do to manage it.
I demanded more testing, including a biopsy of an ulcer on my leg and that was when I was finally diagnosed with Poly Arteritis Nodosa and my AIP journey began. My sister had gone full AIP three months earlier (she has an undiagnosed thyroid issue), and she saw a difference and encouraged me to start. I am now a believer.
Describe what the lowest point on your health journey was like.
My lowest point in this journey was this past summer — pre AIP, post eating beef. I was sitting at the kitchen table after a day at work where I had to limp my way to the bathroom an excessive number of times, and was exhausted from interrupted sleep and the stress my body was under. My feet were swollen from the ulcers, so badly I could not put my feet flat on the ground. It was as if every bone in my feet had disappeared and my joints had fused. They were red and hot and the increasing inflammation made them feel as if they were going to rip open. It was as if I cracked and couldn’t ignore the pain any longer, my fiancé had to carry me to the bathroom where I stuck me feet in an ice bath. I was in pain everyday; it took me five minutes just to get ten meters from the couch to the bathroom. I was sad, angry, and frustrated. I didn’t want to have an autoimmune disease. I didn’t want to be “sick”.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
My symptoms had returned over a period of six months. I had been traveling for work and eating out too much (still not eating anything I am sensitive too, but obviously getting cross contamination), lack of sleep, and eating the beef tipped me over some sort of autoimmune cliff. I was in denial, but it was like I could see and feel it coming; I was inching closer and closer to it then finally BAM I ate beef and I tipped over the edge! INFLAMMATION.
After spending a week at home on the couch because I could not walk due to the pain and swelling in my feet, I sought out referrals to a different gastroenterologist and a rheumatologist. Three months, one biopsy, and so many blood tests I stopped counting later, I finally had a diagnosis of PAN. I was freaked right out – I had never heard of PAN. When I asked for recommendations on how to manage my disease, the only options presented to me were pharmaceutical, and the side effects terrified me. I had been reading and researching (and listening to my naturopath) and knew how eating an anti-inflammatory diet could help manage autoimmune disease, so going AIP was the easiest, hard decision I ever made. I wanted to be myself again. I didn’t want my symptoms to dictate my life choices. What did I have to lose?
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
Along with eliminating the foods I am sensitive to, I decided to follow the “Myers Way”, a protocol by Dr. Amy Myers from her book, The Autoimmune Solution. The book focuses on thyroid disease and that interested my sister, and I saw the difference going AIP had made in her life and I wanted to see if it would help me. The first month was difficult. I had cravings, and grocery shopping and food prep was exhausting. The only time I left the house, for four months, was for work, to grocery shop, doctor’s appointments or diagnostic tests. But by the end of those four months my inflammation had come down drastically, I wasn’t running for the toilet every hour, my symptoms were non-existent, and the progression could be seen in my lab results comparison. I have ugly bruise like pigmentation all over my legs from the ulcers but I am told they will fade over time.
I know AIP is working for me because I am nearly symptom-free, and I am no longer dealing with anxiety on a daily basis. I have good days and bad days, but my bad days are manageable, thanks to my amazing support system. My gastroenterologist still believes I have ulcerative colitis, but because it takes so long to get me in for a colonoscopy by the time my scope appointment arrives my GI symptoms are non-existent – due to AIP – so they’ve never been able to formally diagnose me. But I live my life as if I have both PAN and ulcerative colitis.
What resources have you used on your healing journey so far and how did you find them?
Besides reading Dr. Amy Myers, I like the tips and information found on the AIP Canada Facebook Community, and I love Instagram for everything from finding recipes, to new blogs to follow. It’s so inspiring to know that there are other people out there going through their own autoimmune struggles. I find inspiration from @livinglovingpaleo, @pureandsimplenourishment, and basically anyone who takes over the Autoimmune Wellness Instagram! Autoimmune Wellness has been such an invaluable resource, and the The Autoimmune Wellness Handbook is so great because it answers so many questions I didn’t even know I had! Like how to build a collaborative team of healthcare practitioners.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
Yes, I was told my only option was Prednisolone therapy. I was lucky and my naturopath had prepared me for what the specialists were going to suggest for treatment, so I had time to look into it and start to process the decision in front of me. It’s not that I thought that the treatments wouldn’t work; I chose to try other methods because I saw them as a last resort. To me, changing my diet and lifestyle made more sense then taking pharmaceuticals to mange symptoms. I wanted to do everything I could to heal my body — the risk of experiencing any of the side effects of the Prednisolone therapy was not worth it for me.
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 love experimenting with new recipes and ideas, getting know the new me – my fiancé likes to say this is Lyndsey version 3.0 :). Sleeping! I feel like I am still catching up, my bed currently has eight pillows for exceptional support and I love going to bed early. My sister and I are in this AIP journey together and we love to scourer Vancouver for AIP compliant treats. It’s become a weekend routine, grocery shopping and treat seeking.
I find joy in the abundance of information and knowledge there is out there for my brain to absorb, my protocol is constantly evolving. This last flare was a life changer, and it just happens it coincided with my engagement to the love of life…who is so crazy supportive, he basically eats AIP and cooks dinner a couple of nights a week! Now that I am healthy again it’s exciting to start planning for our future.
To keep up with Lyndsey (and see all of her AIP treat finds!), follow her on Instagram.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.