Have you heard of the Epstein Bar Virus (EPV)? I've just been diagnosed with Chronic Epstein Bar and today I'm sharing all about my personal health issues and how I'm using an AIP Keto Diet to healing my body.
What is the Epstein Bar Virus?
This is a long personal post, but I felt it was time to share with all of you my recent diagnosis so that it might help others who may experience something like what I've been and am going through.
Over the last 2 years I've been complaining to my doctor of certain symptoms and he really just made me feel all of it was in my head. But when horrible chronic itchy hives started attacking my face and neck this past summer, I decided to really become an advocate for myself since this doctor was not listening to my symptoms.
If you've been following me long enough you know I'm a pretty healthy girl who has been sugar free for 14 years, gluten free for 5 years, low carb for 5 years and keto for the past 2 years. In January I got really strict with my keto diet and shared all about it in my Low Carb versus Keto post along with my 6 week results.
I was feeling pretty good back then, but something switched in the spring and I believe it was the first bout of an infection from the EPV, but I didn't know it. It is one of the most common human viruses and spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. I may have been infected when I was a teenager, though I was never diagnosed with mono as a teen.
I hate to even look at these pictures, but I want to share so that if anyone is going through what I've been through it may help you in some way. The doctor just thought since I have allergies, he'd just prescribe prednisone. That was his solution.
So after I insisted on blood work and explained how exhausted I was, that even when I do sleep I don't feel rested and even after 4 cups of coffee I feel like I need more. I complained of these hives, I complained of puffy eyes, he said it was an allergy, and he prescribed singulair.
I decided to pay for my records to be sent to an endocrinologist. I didn't know when I'd be seen as they said she would look at my records and decide when I'd get an appointment. That's when I began the Autoimmune Protocol diet and shared all about it in this post for my Quick Keto Toast.
Within the first few days of removing dairy I thought I was feeling better, but soon these same hives started to come back and after 4 weeks I started adding back foods because it is so very restrictive. I didn't see much change either way with the hives or puffy hives.
What made me realize something was very wrong, was that I was in nutritional ketosis! I shouldn't be feeling this bad. I should not have brain fog, or be exhausted in nutritional ketosis. In fact keto is an anti-inflammatory diet and puffy eyes and hives are a clear indication something isn't right.
So I continued on the AIP diet and gradually was able to bring back my favorite Bulletproof Coffee but since I was staying dairy free, I made a Bulletproof Paleo Pumpkin Spice Latte instead!
I decided to not add back any dairy because it can be inflammatory and I wanted to do everything in my power to help my body heal. I found these NutPods made with coconut milk and almond milk, plus using my Pumpkin Spice Stevia, it was a match made in heaven! I didn't miss not having my heavy cream in my coffee anymore.
I've gotten pretty creative with my recipes as dairy was such a big part of my life, but this Cinnamon Ice Cream made me feel satisfied even without the dairy!
Although I continued on the AIP diet, I still wasn't seeing any improvements with the itchy hives. I shared on my Instagram about my issues and someone mentioned the book, Medical Medium Thyroid Healing by Anthony William. What stood out to me the most was that although my EPV wasn't active, it was attacking another part of my body, my thyroid! It finally made sense to me. I've struggled to maintain my weight on a keto diet and have always struggled. So besides itchy hives, puffy eyes, not sleeping good and feeling lethargic even when I did sleep, I've struggled to maintain a normal weight. My symptoms were all hypothyroid!
Hypothyroidism
By September I was finally seen with the endocrinologist who found and diagnosed me with Chronic Epstein Barr, but said I was not currently active at this time. So the hives and the puffy eyes are not symptoms of EPV anyway, but the tiredness is.
I had done my homework and read a few books, one in particular The Paleo Thyroid Solution by Elle Russ. My doctor didn't believe my symptoms were associated with my thyroid, but I disagreed. My FreeT3 was the lowest of the numbers, the bottom of the normal range. I cried to her and begged to please help me. Just because my number might be in normal range, doesn't mean it's optimal for me I cried. I have all the symptoms of hypothyroid and begged her to help me. She agreed to put me on synthyroid for 8 weeks.
Look at that and compare to the puffy eyes above? Do you see the difference? Not only that, after 4 weeks I am feeling less tired as well. I actually feel rested when I wake and I am sleeping better. The hives aren't gone, but they do seem to be getting better and less inflamed. I'll be going back for blood work in about 3 weeks and seeing the doctor in 4 weeks to discuss.
I'm continuing on a modified AIP Keto diet which is working for me.
I also did a Food Sensitivity Test. I'll have to share that in another post for another time. The results were eye opening, but mine were quite disheartening. I am so very sensitive to so many things, naturally occurring in foods. With this new knowledge I will be eliminating even more foods from my diet for a time, but I'm hopeful all the hard work I'm doing will result in complete healing for my body and riddance of this very annoying hives and puffy eyes.
(Cute outfits from my Stitchfix stylist! Use my Code to get the $20 styling fee waived!)
I hope to report back in about a month with some really good news! I'm positive and hopeful and smiling again! I pray this post will make you question or investigate your own symptoms. If you know you are doing everything right and you're still not feeling good, trust that and find help. Be your own best advocate and find a doctor who will listen!
About Brenda
Brenda Bennett is a certified Nutritional Therapy Practitioner, certified Sugar Detox Coach, certified Keto Coach and certified Life Coach. She has been Sugar Free & Refined carb free for 17 years and has written 2 cookbooks, Sugar-Free Mom, and Naturally Keto and her 3rd book The 30-Day Sugar Elimination Diet, is a four part program to help you detox from sugar, eliminate cravings, balance blood sugar and lose weight all while eating a delicious, nutrient dense whole foods. Meal plan offers two tracks to follow, low carb or keto. She is the founder of the Sugar Free Fresh Start course and Sugar Free Tribe weight loss membership. Learn more.
Chaz
Good for you! You're beautiful and your determination is inspirational!
Kate Ricci
I too have chronic EBV which has been called Fibromyalgia and CFS or ME in Canada. Finally and I say Finally a few years ago my TSH elevated and I was offered synthroid. OMG did I ever feel awful, I took a few days worth and couldn't function at all. It was awful. I researched and found natural dessicated thyroid (Called Thyroid) and that changed my life for about 3 months. I felt alive again, leg pain was gone and I was lost weight. BUT I didn't change my diet. So I researched more and cut out gluten. I was better but not good. Last year I found AIP and was strict for 30 days and felt amazing. It's a rough go at first, I went into it cold turkey. Then I added back eggs, etc. and that is when it became a slippery slope and I got worse again. I am back on AIP now, will probably stay on it for a long while this time. I finally feel as if my body is telling me what it likes. Each of us is different, we have to learn to listen closely and keep a journal to see what is causing symptoms. I also did transdermal allergy testing and that was very helpful. Best of luck to you and everyone out there fighting this and other autoimmune conditions. Don't give up, keep trying to live your best life.
Christina Herren
I have the same thing. I've known or suspected Epstein-Barr for a while and recently my labs showed hypothyroidism. I will be test for hashimotos next week. I don't have hypes but I get chronic sore throats every year Jan-May. I'm always tired and have no motivation. Cold all the time, dry hair and skin. It sucks. I hope I can get the right treatment and prevent any worse problems from development. I've been keto for a year in half now. I've tried to transition into carnivore but something are tough to give up, like tea and chocolate.
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Sheena
I had mono as a teen and over the last year and a half have had unexplained weight loss, pain throughout my body, fatigue, rashes that look very similar to yours, and puffy eyes. I have been on thyroid meds for 10 years or more due to having part of my thyroid removed because of a mass. Last week, a coworker told me about her daughter's diagnosis of EBV and I started reading about it because of so many similarities. I got tested today so I'm waiting on the results. I know they can't treat it, but just knowing it's not just in my head helps me feel better.
Dennis Ugwu
You are not alone, that is how I feel right now, persistent fatigue, myalgia, axillary lymphadenopathy and persistent lymphocytosis on my full blood count.
Please I am available for any advice based on your experience.
Thank you
Kirstin Mitchell
https://goop.com/wellness/health/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/
Renee
Wow! Your story is insane and frankly, scary. I'm happy to hear you are finding some relief. You really do have to be your own advocate no matter how much your doctor thinks you're wrong!!!
I recently learned this the hard way. Three years ago, at age 30, I was diagnosed as Type 2 diabetic- not a surprise, diabetes seems to run on both sides of my family. I soon became very unhappy with my doctor due to his choice of medication for me. I had no improvement but severe side effects; now that medication is under serious scrutiny. I changed to a fresh-out-of-residency doctor (the only one accepting new patients in my area). He didn't question my original diagnosis, at first. After nearly a year, he started to wonder if I had been misdiagnosed or if I had another condition contributing to my poor health. First he tried a different medication regiment. I showed a little improvement but then took a major backslide.
After nearly two years, my second doctor was at his wits end. He referred me to an endocrinologist. FINALLY, someone did the blood work and found out that I am actually a Type 1 diabetic. I finally felt vindicated because I, too, was always tired, sick, and barely functioning. I kept saying it had be something else. It is not normal to feel like that. Misdiagnosis is a serious problem. It's also incredibly scary. I pray for anyone struggling with this path.
Brenda
That's crazy! I'm so sorry it took so long to get properly diagnosed! I'm glad to hear you are also doing better now!
Susie Watson
Ditto to all the thanks, I am also sorry you have had to endure this for so long and not have a good physician in your court. What I need to know is what kind of exercise are you doing? I am a fitness instructor, currently on a leave of abscence due to the recurrence of EBV. Thank you again.
Brenda
I've been using a personal trainer for about 2 years so I never did stop even when I got diagnosed.
Cheryl
Thank you for your recipes, I've used them for quite a while and recently gave your book to my Mom.
I applaud your perseverance thru health challenges. Something I might add to be aware of is something called 'Mast Cell Activation Syndrome'. It causes reactions to everything when it becomes full blown but can go on for years without being recognized. The book "Toxic" by Dr. Neil Nathan, is a good starting place for this. I wish you much health and joy!
Maureen
Great post! Interested in your follow up as well. I have been keto for 3 years, haven't checked on EBV but suspect it and have thyroid issues. I also turned to the Medical Medium for thyroid information. What I am wondering about now, is all of the fat in my diet. Is high fat making my liver sluggish and exacerbating the EBV / thyroid issues? Just wondering if you have the same dilemma. TIA!
Jay Howard
@Maureen ~ Why don't you follow the low-fat diet recommended by Anthony Williams for say a month, and see how you feel?
Linda Campbell
I've been dealing with acute thyroiditis for 2 years now...have been at various times, acute hyperactive thyroid, to acute hypoactive thyroid...to semi normal, then back to Hypo....then put on synthroid for a while...then oops...back to hyper...got off the synthroid....doc said I had spontaneously healed my thyroid....now...10 weeks later, I feel I'm right back to hypoactive thyroid...went and had a blood draw this morning.
All throughout this...the doctors have said a "virus" had probably attacked my thyroid to cause this acute thyroiditis...(normal course is 4-6 months hyper, then 4-6 months hypo...and then maybe you go back to normal)...
Well, occasionally, it's been mentioned to my by my functional med doc that I might have a latent case of EBV...I've been reading a good bit on that the past few days....and I saw your post where they said you had EBV but it wasn't active. I believe I'd read yesterday that in order to eradicate it from your body you need several months of valcyclovir...yet you didin't mention any treatment for the EBV?
Very interested in your comments...whether you post and/or email me directly.
BTW - I'm gfree, dfree, vegan...been trying to follow diet to help my body heal...but it's not helping...(no processed foods...eating rice/quinoa/oatmeal, avocado, broccoli...tuna a few times/month, ....all at the suggestion of my kinesiology chiropractor who has oddly enough helped me far more than my endocrinologist or my functional medicine doctor thus far.
other than that - I eat a ton of veggies, mostly raw every day, nuts and fruits....oh, and back up to 2 cups coffee/day thanks to these hypo symptoms..... and lots of water, and little to NO sugar...i use Monk fruit or maple syrup if I need sweetener.
Deryck
I'm interested to read follow-on posts to this! I'm on a similar journey, started Paleo/keto about 6 years ago and initially feeling better, then declining. Went AIP about a year ago with little improvement. Then did food sensitivity testing to discover allergies to all the Paleo staples (almond, coconut, even beef) and a bunch of other stuff. Recently tested + for EBV as well, apparently had it a long time ago with a recent flare-up. Definitely interested to compare next steps!
Robin
Just read this. I so honor your being such an advocate for yourself! We have to. I have partial seizure epilepsy and I'm on my 6th med trying to control my seizures. Several seizures this month on new med. Making adjustments. Neurologist wants me to try the epilepsy diet, which is a pretty strict ketogenic diet. I'm trying to eat as low carb as possible, losing 50 lbs since 2012. Will look at your info posted.
Thank you! Wishing you success with health and thank you for fab recipes!
JH
I had chronic EBS, along with many other problems and my body was shutting down. I’m completely fine and healed. Stay away from traditional Drs, they have no idea how the body actually works. Check out Dr John Bergman on YouTube, Drs Joe Dispenza, Jerry Tennant, Bruce Lipton, and Gregg Bradon. The Lord will show you as he did me. He’ll blow you away.
Terence Battle
Hi
I know this post is old but my body feels like its shutting down ..What protocol did you use that helped you?If you see this I truly would appreciate knowing,
Terry
Elise
Thank you for your bravery and generosity for sharing your story. I will remember you when I meet someone with Epstein-Barr some day. One of your previous readers mentioned that it looked like you have rosacea instead of hives. I believe you had hives, but also may have rosacea, a very common skin disease among fair-skinned people that is often easy to clear up with a topical cream. I just printed out your low sugar cranberry sauce recipe to try, thank you!
Angela
Hi! Thank you so much for willingly sharing your experience. It can be hard to open yourself up like that but you never know when it can help someone else! i have struggled for many years with health issues and am continuing to work on improving my health. Most recently I had my breast implants removed as I discovered they can cause multiple issues. So hoping for more improvement with that! Anyway I wanted to mention since your free t3 is your lowest and you have had some improvement with the thyroid supplementation that I found a great deal of relief when I began getting a compounded time released t3. I tried cytomel but the ups and downs were prominent but the time released version has been great. It has probably been the biggest help over anything else I have tried. Good luck and keep pressing on and you will get there!
Brenda
Thank you for sharing!
Gloria
I would recommend the best seller book, The Plant Paradox by Dr. Steven Gundry or listen to some of his videos on You Tube. It's an eye opener as to what is behind many of the symptoms we are experiencing. Learn about lectins in some foods we think are healthy, but are not.
Becca
Sounds like we had the same doc!! I was diagnosed with EBV over 14 years ago - I would go in to the doc crying - I couldn't make it a day at work I was so tired I would sit at my desk and cry. He'd pat me on the knee and tell me he was so sorry I didn't feel well. He then prescribed 2 antidepressants, because after all, he was sure it HAD to be depression being that I was all girly and that. I found an internist that ran all the blood work my GP felt was unnecessary and learned after 2 rounds of blood work that I tested positive for mono and now struggle with EBV. Thanks for that knee pat, doc.
If your doctor isn't listening to you, FIND another one!!
Julie Jasinski
Thanks Brenda for sharing your journey with us!
Kelly
I was diagnosed with Hashimoto's over 20 years ago. I took Synthroid for several years, but didn't feel much improvement. I found a new doctor and he prescribed a combination of Armour Thyroid and compounded T3 medication from Wellness Pharmacy, which I still take today. Simply life changing.
Brenda
Thank you for sharing!