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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.
We have a very special Mother's Day edition of our Stories of Recovery for you this month! Both Kerri and her mother, Brenda, discovered and began managing their autoimmune conditions within weeks of each other, but that's not the most remarkable part of their story. The way they came together to support one another and become partners on their mission to regain health is both deeply touching and incredibly inspirational. Here, read Kerri and Brenda's Stories of Recovery, each in their own words, and see the power of a healing community in action!
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
KERRI: I am healing from multiple sclerosis. I was diagnosed in November of 2014 after the typical autoimmune diagnosis, which took me to many different doctors: endocrinologist, gastroenterologist, primary doctor, etc. At the tender age of 25, I was pretty stunned. Wait, degeneration? But I'm so young! There was also a good amount of relief though - the feeling of being a ping pong ball in a blizzard would finally be over. This downward spiral began in January of 2013 when I picked up a nasty case of typhoid fever solo backpacking around the Yucatan and Chiapas in Mexico. I know you're probably asking yourself, "What is typhoid fever? Isn't that something you pick up on the Oregon Trail?" Well no, it is around.
It's a bacterial infection that stems from salmonella typhi and it was the perfect cocktail for my immune system to go haywire. It landed me in the hospital for 10 days. I was strung out on a slew of antibiotics because we weren't quite sure what I had contracted while I was traveling. The doctors were even calling me Miss Mystery. By the time we figured out what it was, it had spread into my bloodstream and I was shipped over to the ICU.
I liked to think of myself as a happy, healthy being before this, independent, traveling, always hosting and staying really active in my days. I had lots of energy exerting hobbies. The two years following my stay at the hospital were a little bit different. I struggled to maintain. I slowly realized that my energy wasn't the same and things just weren't right. It then started the string of doctors visits for hair loss, weight fluctuation and the many neurological symptoms that I was suffering from. Low vitamin D levels, a poor sleep routine (AKA partying and little to no stress management) were the perfect addition with a gut infection to wreak havoc on my immune system. After the almost two-year hop-around from doctor to doctor with no answers, I finally took a three-day stay at the hospital due to numbness on the whole left side of my body. They did an MRI and a spinal tap and diagnosed me with MS.
BRENDA: I was diagnosed with lichen sclerosis in October of 2014. During my yearly visit to my gynecologist she saw some evidence that alerted to her to do a biopsy. It confirmed that indeed it was LS. I believe my LS symptoms had been going on for a few years prior to her ordering the biopsy. I had been mentioning my different symptoms of vaginal dryness/burning, tearing, and painful sex, which she dismissed as perimenopause. I did learn these are some of the symptoms of perimenopause, so I was confused and had started to think this was just a horrible part of aging. It's not! When she diagnosed me, I wasn't really that concerned since I had no idea what LS was, I was just relieved to know that something else was indeed going on, and I wasn't crazy.
I feel now that my perimenopause was probably brought on by the sudden death of our 21-year-old son seven years prior. So I was grieving, then transferred directly into perimenopause, and then to the diagnosis. To say I had a lot going on is a gross understatement. I wasn't paying too much attention to how my genitals looked, I was just trying to learn how to breathe again.
I've had digestion issues for years. For so long in fact, that I can't figure out how many years. At least 15. I feel that my symptoms are under control today. I manage them by doing everything I've learned, mostly from the AIP. When I do have symptoms now, with my LS it's usually burning. My flares don't last as long as they did before AIP. I also suffer from migraines, tension headaches, gas, bloating, sugar cravings, and pain in various locations throughout my body. It's usually caused from lack of sleep, too much stress that I let get out of hand or eating too much sugar!
Describe what the lowest point on your health journey was like.
KERRI: The lowest point of my health journey was probably the summer before my diagnosis leading up to that fall. I was depressed and couldn't keep weight on my body. I was gaunt, pale and just felt so unhealthy. I was exhausted from the run around. I had an appetite that was all over the place, hungry sometimes, starving others. I just kept cramming food into my body with the hopes I would gain weight but continued to feel malnourished.
At this time too, I had begun having my more severe symptoms of MS: a hefty bout of vertigo that lasted about a week and left me unable to do much of anything. It finally all just built up. I was scared, confused and unsure of myself and my health. Being in the state where I knew something was wrong with me but I had no answer or solution on what to do or how to move forward was painful, unsettling and just a real big downer. This was also the time where my mother and grandfather also got diagnosed with AI diseases. It was an-all around scary and confusing time for everyone.
On top of all of that, I was coping the only way I knew how: partying, taking care of other people instead of myself and staying distracted or in denial, probably both. It's so true that getting a diagnosis helps us move forward, spiritually, physically and mentally. It's just good for the soul to know that our intuition is true and to listen to it. Then we can make the changes that need to be made and follow through with our actions and our determination.
BRENDA: In October 2014, I was diagnosed, followed by my daughter's diagnosis of multiple sclerosis two weeks later. That was a horrible time. Perimenopause still didn't make a lot of sense, our loss was horrible, but I/we were learning and accepting our new normal. Kerri's health though was a huge concern to my husband and me. We were so sensitive to her needs but didn't quite know what to do for her. She'd been hospitalized for 10 days in ICU due to typhoid fever and that was so scary, especially since it was just a few years before that we'd lost her brother. She was losing hair and weight at a rapid pace and in and out of doctors. We were trying to be completely present and positive for her sake.
My health issues were happening at the same time as hers so that was the lowest point. Having no idea what was happening to my health, seeing it and my sexuality, energy and vitality go out the window once again, so soon after the loss of our son was too much. Seeing Kerri wilt away and not knowing how to help her - well, as a mother I felt completely lost. Her diagnosis hit us much harder. I really didn't understand what LS was or what the side affects of it were that first year, which in hind sight was probably a blessing. Not knowing completely enabled me to focus more on her needs. Plus, the research of LS was too damn scary!
It also took me a while to come to terms with my own diagnosis. There's so much secrecy and shame surrounding LS since it affects the genitals. It's not something I can easily or openly talk about. For that reason, it's been extremely isolating. Learning what treatments are available, finding the program that's right for me, applying it and doing AIP have put me in more control of my own health. I feel more empowered today and less vulnerable. Though I don't always like that the responsibility lies within me.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
KERRI: I did not start following the AIP until February of 2016, when I had my most severe episode. I lost the ability to speak properly. I had an enormous lesion on the language department of my brain, which left me with having the words in my head but not being able to get them out of my mouth. My speech was slurred and I was struggling to communicate almost as if I had had a stroke. At that point, I didn't think I would have had symptoms like that for many years to come.
They lasted about a month, with steroid treatment for five days and a speech therapist for a couple weeks. I had been messing around with AIP the year before, learning about the foods to eat and following it sometimes. My mom even signed us up for the SAD to AIP in SIX program with Angie but for the type of personality that I have, this simply was not enough to completely change my lifestyle and diet. It did instill more knowledge and a great support team for when I did fully make the transformation though, and I was super grateful that I was able to segue into such a strict protocol. I really needed something to rock me and this episode did.
I also had to move back home, stop my vagabond, back-of-the-truck lifestyle and settle in to all that had unfolded in my life. I had stopped drinking and partying the year before (that was the way I would hide and cover things up) and to say that I was finally grieving the loss of my brother who passed when I was 18 was an understatement. It all came to this exact tipping point. I began the strict protocol the day my mom showed up in San Francisco to help me with my recovery and treatment. She flew in from Baja within hours of me calling to inform her of my symptoms and whereabouts (aren't moms the best?). Since we were both diagnosed with autoimmune diseases within weeks of each other, we dove in together, mother-daughter duo… powww!
BRENDA: Having Kerri diagnosed at the same time was a huge tipping point. I knew they were life-or-death choices we needed to make and fast. My baby girl having MS took my breath away. My LS diagnosis was hard to hear but not near as hard as hearing hers. I knew we needed to make some changes and fast. I no longer had the luxury of denial. Self-pity stepped in of course, but it was gone in no time.
I hit every book and web page I could find, on anything. There wasn't that much out there at that time though. There was more information out there about MS then LS so I just used that as a tool to find recovery treatments for both. It really was a blessing that we both were going through these things together.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
KERRI: I found the Autoimmune Protocol and for me it was perfect because my main goal was to reduce inflammation. I first discovered it when an Ayurvedic physician told my mom and I about it, actually specifically recommending it for both my mother and I (I think we looked at her like she was crazy!). That was the end of 2014 and I didn't start the AIP for over a year after that. I guess I needed lots of warm-up time!
I first knew it was working when my lesions came down to 1⁄3 of what they were, just two months after my speech episode. It was clear that this kind of approach was supporting the swift recovery of the healing in my brain. It was anti-inflammatory and nutrient dense. Even my doctor was surprised and impressed. He said that a girl my age with the same lesion took almost a year to recover. He even recorded my voice before and after to show his colleagues. Any kind of reaction like this from a doctor is pretty motivating. We looked at the before-and-after MRI together and decided that I was going to keep doing what I was doing.
BRENDA: It was a while after that that I could focus on my own health issues since Kerri's diagnosis came soon after mine. I wanted to be there for her and help her sift through the medical field madness. Once Kerri had a good team in place I began to focus more on myself. I know they say to put the oxygen mask on yourself before helping others but I didn't. I think that's why they go out of their way to tell you that. It's easier said than done.
As mentioned, my healing has had many phases, but when I really dug in and worked on some of the AIP principals I noticed that a lot of my digestive symptoms were fading away. I had been through that before with the candida cleanse of The Virgin Diet protocol. Then I went deeper and stronger into some more of the cleansing and detoxing. Those were hard weeks/months. Detoxing emotions came next. Equally as hard. Lots of tears happened. Things seemed to be expelling from my body through my skin, etc. I kept going and working through those tough spaces.
Clobetasol, steroid crème, was used for almost a year. I've done the Mona Lisa treatment. I'm on a trial led by a vulva specialist that went pretty well. Treatment continues by both he and I, as well as my daily choices, sleep. sunshine, stress management and healthy food choices. It's a full circle process for sure.
Most days today are great days. When I have set backs or flares, they don't last as long. I'm not sure if that's because I know what to do to heal quicker or what, but it's working.
What resources have you used on your healing journey so far and how did you find them?
KERRI: Dr. Terry Wahls and Ann Boroch were both recommended to me by dear friends right after my diagnosis. Both amazing, inspiring stories with YouTube videos, books and cookbooks. The Wahls Protocol by Dr. Terry Wahls has been a golden ticket to me gaining more knowledge about MS.
Some more books I have used throughout my healing journey are Sarah Ballantyne's and Diane Sanfilippo's, The Paleo Approach and Practical Paleo, that my mother and I found at Costco believe it or not. At my first glance at these books, I thought that this approach was nearly impossible. Mickey's book The Autoimmune Cookbook has literally been my bible (that my mom so graciously found for me).
I also love podcasts! The Autoimmune Wellness Podcast, The Phoenix Helix Podcast and Revolution Health Radio - these have been a big tool for educating myself and connecting with this community. The Grazed and Enthused blog for all my go-to, yummy, sweet treat recipes.
Opening up to friends and connecting with people on social media have both been a great way to connect with fellow MS warriors. Companies like Kitchen Witch Bone Broth and places like Mission Heirloom in Berkeley, CA are also godsends. My mom has been a big resource tool and support buddy, as she had a lot more time in the beginning (you know, when I was traveling and being a 20-something year old) to search the internet and pass on the information that I needed (once again, moms!). The online support of the NorCal autoimmune facebook groups has also brought a lot of information our way, like the Berkeley book signing of The Autoimmune Wellness Handbook!
BRENDA: Thankfully I love to collect cookbooks and I love sharing them with my daughter. I'd buy them, look through the recipes, buy any ingredients needed, then she'd dive in fearless! It's been a win, win situation that's still working for us to this day.
Fortunately, I love to peruse the book sections and I happened upon these two during the holiday season of 2014: Sarah Ballantyne's The Paleo Approach and Diane Sanifilippo's Practical Paleo. They looked interesting, but also a bit inaccessible, so they got put aside for a few months. A friend had recommended Dr. Terry Wahl's protocol for Kerri. I was having so many problems that seemed to be food related still. I felt we needed to support our bodies along.
Since I had been searching for solutions to my digestion issues long before my LS, it was a bit easier to start. I had already had allergy testing done in 2010, suggested by an ear, nose and throat doctor. The test results came back just how I had known in my gut they would, and my candida albicans number was literally off the charts. After that knowledge I sought out and followed the 'Whole Approach' Candida Cleanse for over eight months, including the hydro colonics they recommend. I did see great progress from this protocol.
My doctor suggested that I read The Virgin Diet and follow it. She was a conventional doctor but had heard many good things about people cutting these seven foods out of their diet: gluten, dairy, soy, eggs, corn, peanuts, and sugar (including artificial sweeteners). It was hard at the time, but I omitted one food group each week and that made it easier. I still struggle the most with sugar. It's my downfall.
In September of 2015, Kerri and I signed up for Angie Alt's program SAD to AIP in SIX. Since I was already almost there, it was much easier for me at this point. The reason for seeking this program out though, was for the support aspect. When Kerri and I were living/staying together we had an easier time cooking and creating. We could jump the hurdles together and that made this new lifestyle easier. We needed to broaden our support group and this program helped do that for us. Everything in life is easier when you have the support you need.
We had some fall backs over the holidays (extra sugar in the form of dates, maple syrup, AIP baked treats, etc. That 22 grams of sugar, even natural, that Sarah Ballantyne talks about is for REAL hard stuff!) but by February 1st of 2016 we were on full elimination of AIP. We remained so until reintroductions started for Kerri and now for me as well.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
KERRI: Currently, I have rejected going back on immunosuppressant medications. I did the steroids treatment and tried some medication because, at the time, it was the best thing to help simmer down my flare ups. I am in no way against western medicine for it saved my life with the typhoid fever and there is a time and a place for treatments and medication. I just feel that I have educated myself a lot on so many other aspects of healing, it is a full circle approach.
I am being kept a close eye on with a diverse team of neurologists. I feel confident that with this team, my self-care routine, diet, sleep, and stress management I can monitor my symptoms. I am more than grateful to have landed at UCSF with a great team of doctors because I know that isn't not always the case. I chose to try other methods because I believed in them. I believed in the knowledge behind the Autoimmune Protocol, to support the healing of the gut and support the building blocks of my brain with nutrition and lifestyle. I also believe in a functional approach of looking for the root and supporting all the other pillars of healing. The pillars that can help us thrive and live a life of quality.
BRENDA: My gynecologist suggested the standard protocol for LS which is topical steroids for the rest of my life. I did that treatment for about eight months, until I felt it was doing more harm than good. I started paying more attention to how my body looked and it seemed as if the Clobetasol was making the LS worse. Ironically the side effects are the same as the LS! For me this wasn't the treatment I felt comfortable with.
My pharmacist had also expressed concern to me about using that strength of steroid crème for long periods of time. I decided to finally listen to my gut and seek out alternative treatments. My gyno had referred a vulvar specialist earlier on that I finally called, Dr. Baggish in Saint Helena, CA. He offered me another solution which I'd read about. I could be a part of his clinical trial since I met the criteria, What a blessing! He has written many papers on LS and was doing this trial using Co2 laser therapy. I've finished my last treatment. The study has shown promising results. For me it's been better than Clobetasol but everyone needs to find which treatment works best for them.
After that, I worked on balancing out my hormones which has helped in many ways. I'm happy that I listened to my needs and found a program that works for me. I don't think there's a blanket treatment for everyone with any autoimmune disease though. I think we need to find the program that works best for our own individual situation, whatever that might be. I've had to really work to find my magic program, which I'm still fine tuning.
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?
KERRI: Seeing success in my health trickle off into all other aspects of my life, from my relationships to my well being. My downward spiral has become my upward spiral. Enjoying the little things. The support of my family (my parents rock!) and friends, my dogs, my garden. Being outside in nature, amongst the trees, near the beautiful bodies of water that I am surrounded by is my happy place. That I can still do the same things with some changes, better boundaries and being able to speak up and ask for help: all of these are new skills that have been developed through this journey. It is all a blessing when you look at it with the right colored glasses on (my grandmother always said everything looks peachy when you are wearing rose-colored glasses.)
Getting crafty in the kitchen with the number of friends and family that support me and are amazing chefs is a joy. Exploring new recipes, baking and creating delectable CBD wellness sweets is the icing on the cake for bringing me joy in the kitchen these days.
I have also started working for a wonderful company, Kitchen Witch Bone Broth, doing demos around California sampling our broth and talking to people about gut health. The support of this company and being a part of a greater mission lightens my load and brings me pure happiness. It not only brings me joy spreading knowledge, but supports me being able to drink tasty broth on the daily. It is amazing being able to share my story and connect with others. It's so powerful how chronic illness can change our perspective on our healing journeys, if you allow it. For now, my purpose is also being fed.
I'm grateful for so many unnoticed things in my life: my relationships with my parents is stronger than ever and I do things that fill my cup up constantly. I am loving my process and I am trusting that everything is happening for a reason.
BRENDA: I really do find great joy in knowing that we continue to inspire, strengthen and motivate each other and those around us. That's one of my greatest rewards. I've always found joy in helping others. Giving a helping hand to those that have yet to walk this path that I've had to walk brings me great peace and joy.
Honestly, some days I struggle with this. I'm working on finding my way back, but I remember very clearly telling a friend that I had lost my joy and I was trying to find it again. That was about a year ago after a yoga class. I love to learn new things about myself, new ways of reinventing myself, finding out who I truly am and bringing my best "me" forward in every way possible. I love to spread that wealth of knowledge and truth with my family and friends.
Today the oxygen mask must go on me, then I can spread my joy again freely. Some of the things that are helping me find it again are my daughter (she teaches me so much about love and joy) and my husband of 33 years who's loved me and taught me so much about being the best me possible. Long walks on the beach with my pup help tremendously! I'm a work in progress!
When I'm with my family and our animals, it doesn't really matter where we are, that's pure JOY. We love to be in the kitchen or walking in the forest with the doggies. Spending time at our home in Baja makes me happy, too. We are fortunate enough to own a little piece of paradise thats completely off-grid which is delightful. Some days it's a real struggle trying to decide whether to get in the kitchen or take a nap. Both are great choices. Finally, at 54, I'm taking naps without guilt!
Having a great attitude, breathing and exercise are keys to my well being. They're very basic needs and seem to be the most simple, but most days they're the most difficult.
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