How I’m healing from chronic illness
Lately I’ve been reflecting on the power of sharing our personal healing stories. I am continually grateful for all the brave souls who share the twists and turns of the healing path. It gives hope to those in the thick of searching and discovery. It gives solace to those in despair. Healing chronic illness is hard on every level, psychologically, physically and spiritually. It takes you places you never knew you could go. And it forces you to find a reservoir of strength you didn’t know existed.
I’ve never shared my story before today, mostly because I’ve been deep in discovery and healing for the last 2 years. Healing chronic illness is a full-time job and there are days you think it’s never going to get better. Being chronically ill when you don’t “look sick” is especially difficult. It’s hard for your friends and family to understand how you feel on the inside, when you look so great on the outside. For years I told my husband I wished we could swap bodies for a day so he could feel what it was like to be me.
This month marks 2 years since my symptoms appeared, and 1 year since I started my healing protocol. I still have more healing to do (and probably always will because health is a journey, not a destination), but today I’m in a totally different place health-wise and have so much hope, energy and vitality. My intention for sharing my story today is to provide hope to those who need it. We ALL can heal. Our bodies are amazing.
Here’s my story…
My healing journey starts in 2014
In June of 2014 we returned from our expat adventure in Argentina (read more about that here) and I was feeling a range of emotions. I was sad to leave Argentina and I was thrilled to be home. I missed our friends abroad and was happy to see friends and family in the US. I loved speaking English again and was devastated not to speak Spanish on a daily basis anymore.
Everything in my life felt happy and sad, up and down, light and dark. And more than anything I felt…..very tired.
We spent June and July of 2014 hopping around hotels and living out of suitcases while we waited for our house to become available. Our furniture was being shipped from South America and we lived a transient lifestyle that summer. I’d done it all before on the way down to Argentina, but this time the adrenaline had worn off and I was feeling worn down. We spent August with my family in Idaho and when we finally returned to our home in California, I starting feeling really….off.
It started as tingling in my hands and feet and face. Then I started feeling off-balance and had trouble walking in a straight line. I felt light-headed and dizzy most of the time. I couldn’t keep a train of thought. I became very absent-minded. I started doing things like leaving car doors open in public parking lots or forgetting why I walked into a room.
To say I was concerned would be an understatement. I was terrified.
In fact, after dealing with the balance and dizziness issues for only 2 weeks I was convinced I had multiple sclerosis (can you say anxiety???) and ended up checking myself into the emergency room one Saturday morning in September of 2014.
While in the waiting room of the ER, I suffered my first ever panic attack. My stress levels had sky rocketed in the waiting room and I started having trouble breathing. My husband and 3-year-old daughter sat next to me and I remember telling my husband I couldn’t breathe well. I asked him to get a doctor. I’d never had a panic attack before. I had NO IDEA stress could cause such acute physical symptoms. My husband knew it was stress and kept telling me to breathe, but it was too late. My panic attack in full swing, I told him to call my mom because she needed to get on a plane. I thought I was dying.
This got me in the EKG room really quickly.
A long day of testing revealed a clear MRI, EKG, ultrasound, and normal blood work. The neurologist on staff gave me a neurological workup and while he said I was lagging slightly on my left side, he mostly pushed anti-anxiety medication.
I left the ER with a 2,000 dollar co-pay bill and a prescription for Xanax (with instructions to also follow-up with a local ENT and neurologist).
Um, thanks?
Now I’m not saying I didn’t need some help with anxiety during that time. I certainly did that day in the ER. I had worked myself up into a tight ball of nerves. But I knew anxiety wasn’t the cause of my dizziness, balance issues, memory issues and intense fatigue. So I took those clear ER tests as a baseline and decided to figure it out on my own.
Little did I know it would take me an entire year to figure out what was at the root of my symptoms.
Jumping from doctor to doctor
During the fall of 2014 and spring of 2015 I saw an array of medical doctors (MDs), naturopathic doctors (NDs), and functional nutritionists. I spent thousands of dollars on functional testing, all of which turned up nothing. I was tested for lyme disease, autoimmune disease, food allergies, yeast overgrowth, thyroid disease, mold and more. All tests came back clear.
Anyone with a chronic mystery illness knows how psychologically draining it is to feel like crap, yet have every test come back negative.
In spite of all these “normal” tests, I was still dealing with a laundry list of symptoms off and on like tingling, mild tremors, a 2 day bout of vertigo, memory loss, anxiety, muscle fatigue, sensitivity to light and sound, trouble tracking, trouble finding words, decreased coordination and balance… and more than anything I was tired. So very tired.
By the fall of 2015, a year after my trip to the ER, I found myself so tired that I couldn’t walk around the block without needing to sit down. For someone who had exercised her whole life, this was craziness. I stopped working. Caring for my children felt impossible. On my really bad days, I counted the hours until my husband could take over at 5pm and I would crawl to bed and sleep, waking up just as tired as when I’d gone to bed. The fall of 2015 was definitely my low point, both physically and psychologically. My marriage suffered. My children suffered. I suffered.
Finally, my diagnosis
In October 2015, sitting in my ND’s office (with another set of “normal” test results in my hands) I found myself crying and telling my doctor….I’m just SO tired. I can hardly function. I’m so, so tired. She looked at me for a very long moment. I am forever grateful for this moment. It was one of the first turning points in my healing journey. She sat looking at me, wheels turning, and finally said, “You know, this really sounds like Epstein-Barr virus (EBV), did you have mono as a child?”
Yes.
Yes, I had a raging mononucleosis infection as a teenager.
Yes. Yes. Yes.
A quick blood test later showed I was suffering from a RE-activation of the Epstein-Barr virus (EBV) and FINALLY, I had some direction.
My naturopathic doctor and I developed a healing protocol that got me out of bed. Weekly vitamin C IVs and lots of targeted supplements gave me my life back. After 8 weeks on this protocol I felt 50% better (HUGE improvement after a year of misery), but I was still dealing with some lagging neurological symptoms and fatigue.
Sharing my story
Around this time I started sharing my diagnosis with my close circle of friends. So many of them had been with me through my searching and knew how much I suffered without answers. Thankfully, two separate friends on the same day suggested I read the book, Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal. They also referred me to this article on the GOOP website, written by the book’s author, Anthony William.
Two friends (who don’t know each other) giving me this information on the same day got me paying attention. While the book seemed somewhat mystical to me, I was open to anything and read it with an open mind and heart.
I’m glad I did because this book changed everything for me.
As I read the book, I cried tears of JOY to see all my symptoms listed in one place, along with a specific plan of herbs, supplements and food to heal Epstein-Barr. I let go of so much fear and anxiety that day, knowing that I finally had more direction about healing EBV. I started on Anthony’s EBV healing protocol in November of 2015. It is now November of 2016 and my health has improved dramatically.
My neurological symptoms are mostly gone and only mildly return if I let myself get really run down. I take any neurological symptom as a message from my body to refocus on rest and healing and within a few days the symptoms are gone. My energy levels have increased dramatically. I’m no longer crawling to bed at 5pm. I’m able to care for my children, work part-time and even go on an occasional date night with my husband. I can go for long walks without having to sit down.
I still get tired if we travel for long periods of time, or even if we go away for the weekend and I’m eating out at restaurants a lot. When this happens, I listen to the fatigue and instead of getting scared or depressed, I now go back to Anthony’s healing protocol to revitalize my body.
Yes I still need to be mindful of my health (we all need to!), but overall my quality of life has improved 100% in two years. It’s amazing. I have my life back and I’m forever grateful for the work of Anthony William and for my naturopathic doctor who finally ran the right test for me a year ago.
More than anything I’m grateful that Anthony took away my fear. I had so much fear about every new symptom that popped up. I’d stay awake at night wondering if something more serious was brewing. But once I learned that the Epstein-Barr virus was responsible for such a wide variety of symptoms, my fear diminished. This is one of the biggest gifts of Anthony’s work in the world. Less fear, more healing.
A silent epidemic
Since finding Anthony’s book, I’ve learned Epstein-Barr virus (EBV) is very common and there are many different varieties and stages of the virus. Out of a population of 320 million people in the USA, over 225 million have some form of this virus.
EBV is responsible for many “mystery” chronic illnesses like: chronic fatigue syndrome, fibromyalgia, thyroid disease (including Hashimoto’s thyroiditis), vertigo, tinnitus, lupus, breast cancer, multiple sclerosis, and even some cases of lyme disease. So if you’re dealing with any of these conditions, Anthony’s book may provide the a-ha moment you need, just like it did for me.
In my next post I’ll talk about the top herbs, supplements and holistic health practices that have helped me heal from chronic Epstein-Barr. I hope this post gives you hope for your own healing or for the healing of a loved one dealing with chronic illness. Our bodies are capable of so much healing, no matter how long we’ve been sick. Keep your hope. Know you’re not broken. Know you can heal.
Thanks for allowing me to share my story today. I’m sending so much love to you all.
Read my next post on healing EBV here.
Thank you for sharing your story with us and for giving others hope on their path to helping!
Thank you so much Angela. I miss you <3
My brave, strong, beautiful friend! I am inspired by you on a daily basis. Thank you for sharing your heart. Sending you love and much deserved healing!
The feeling is mutual my brave, strong, beautiful friend. Not sure what I would do without you. LOVE you.
Super amazing story. I suffer from Ortho-static hypotension. It caused me to feel weak, dizzy and sweaty and realized I’ve had if my whole life. I was so greatful when a doctor took the time go hear my synthoms. I knew something wasn’t right when I couldn’t stand in a long line without having to sit down. I was on medication. But I now take vitamjns, use essential oils and have cut out a lot of bad foods. It comes and goes sometimes, but like you I can manage it. I am just grateful its not the worse kind, where people black out. I can’t wait to read how you heal your pain.
So glad you are finding your own healing path, too!
Wow Heather. I had no idea you were suffering. How awful. I’m so glad you’re feeling better now. Thanks for sharing your story. I can recommend this book to my patients too. 😊
Thanks, Staci! It’s been quite the journey and I’m so happy I’m coming out the other side now. I’m sure so many of your patients would benefit from this book. It certainly helped me so much. xo
(( 💟 ))
Thank you, and hugs back 🙂
Thank you so much. I’m from Uruguay..South America. All my respect for you…you are brave!!
Thanks, Paula—we miss living down there! All the best to you and thanks so much for reading 🙂
Wow – I can’t help but think how many people you will be helping by sharing your story! Glad you are doing better.
Thanks, Margot. I got your email and will reply soon. Thanks so much for reading 🙂
You are giving me hope Heather! I feel so tired lately and have been working myself to death as well as taking care of a child. Although I do not have an EBV diagnosis, I will definitely take some of your suggestions to heart when you write about what you took. I’ve been following medical medium as well. Great stuff!
Blessing, you are such a good mom to your little one. It’s been a pleasure working with you. Self-care is so important so I hope you can take time to get quiet and listing to what YOU really need to stay healthy and vital. Glad you are following Anthony, too! He provides such insight. Sending you lots of love…Heather
I don’t know quite what to say other than I have a few tears in my eyes right now after reading this. I finally don’t feel alone or crazy. I had gone to the doctor a year and a half ago for a few symptoms, aches, rashes, fatigue and was diagnosed with the early stages of shingles. She said there was nothing she could do as I’m in my early 30s, it was stress from having babies, I came in late, and told me to take vitamins. Fast forward a year later after still having ailments off and on, and I woke up to my left side feeling tingly, numb, nerve pain, sensitive to water temperature, fatigue, headaches, flashes and cloudiness. I thought it was shingles coming back so I went in. He told me the other doctor didn’t take notes, he didnt believe I ever had shingles, but I had nerve damage from something caused by shingles. Told me all of these things I did not have, contradicted himself, but didn’t forget to tell me about his awesome 25 year medical history. I was told to take an aspirin and sent on my way. I still have symptoms.and ailments. I read the sample on the goop link you included and I couldn’t believe it. So many things clicked, it’s like it was written for me. I feel like there’s a light at the end of this long tunnel. Thank you for posting your story. Thank you thank you!
My heart goes out to you my friend. I absolutely know the feelings of frustration when trying to figure out what the problem is. I’m quite sure an asprin is NOT what you need. Second to Epstein-Barr virus, Anthony talks about Shingles the most as an underlying cause to many chronic illnesses. He has a free podcast on the subject here: http://www.medicalmedium.com/blog/shingles-virus and also talks so much about it in his book, too. If you can’t get the book right now you can also request it at your local library and they will get it for you!!! It lists all the supplements that fight shingles. You can absolutely heal and you are NOT crazy. Sending you so much love.
Very moving, thank you for sharing your story. I’m very happy you found your medium. It can be such a long and difficult journey to even find the culprit!!! So glad you did, that is so much of the battle. xoxoxo
Thank you so much, Sally! Finding the root is the biggest hurdle, isn’t it? XOXOXO
So glad you are not your old self, who I love, but a new and improved self. Hate hearing that you went through this, but admire you so much for your honesty and strength, and courage! You inspire every day. Miss you xo
Thank you so much, Liza. Let’s talk really soon. Miss you.
Hi Heater,
Thanks for sharing your story! I read it very quickly as I have symptoms so very similar to yours (occasional trembling of hands, especially left one, vertigo, dizziness and inability to focus). They come and go and when they come I feel really scared.. My husband thinks I freak out and he would gladly send me to a psychologist. I was diagnosed with Hashimoto and am supposed to blame it all on my thyroid. I will be waiting for your healing protocol…. Lots of love!!!
Hi Ella, In his book, Anthony talks about the root cause of Hashimotos: Epstein-Barr virus. I think you would get so much out of his book and also the article I linked to in the post: http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/
I look forward to hearing your thoughts next week after I write about my healing protocol. Thanks so much for reading and sending you lots of love and healing.
Wow, thank you for sharing. ❤️ Needed a dose of your inspiration. Makes my heart so happy to know that you are on a clear path with your health. Sure do miss you!
I sure miss you, too!
Hi Heather. Our hearts fo out to you. If we had known, maybe we could have helped with the little ones. We love you and are so glad you are on the mend. (I took the liberty to send this to our side…who are probably not in on your site!)
Heather- you are gifted with an awesome ability to story tell and write! Your aunt Maryann had EBV and she had Mono. I’m so sorry you are dealing with this illness! It makes me really sad because my mom had it her entire life. My sister and I spoke this morning about your post and we both remember our mom asking us all the time if she had a fever…. my mom had chronic digestive problems! I’m sure your naturopath has you on digestive enzymes my favorite addition to my supplement routine! I’m not sure if you suffer from inflammation, but Proteolytic Enzymes are my rock for all pain! Amazing post! I’m always a phone call away!
Hi Annie, I was actually thinking of your mom yesterday and wished I had known more back then to help her with EBV (the main virus behind chronic fatigue syndrome). The protocol I’m on really has me feeling good.
Your mom shined bright in spite of how she felt. What an amazing woman.
Thank you for sharing Heather! I am so glad you are feeling better.