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.
Theresa
Wow, thanks for sharing your experience. I have Hashimotos hypothyroidism that went undiagnosed for years and I know what it feels like to have doctors look at you like you are a hypochondriac. I've been through four endocrinologists in the past fifteen years and all they want to do is throw meds at me, including meds for anxiety because when my thyroid goes up too high it feels like an anxiety attack. I've refused to take anything but the thyroid meds because, like you, I do know my own body and know I don't have anxiety issues. I've finally found an actual board certified endocrinologist instead of doctors that specialize in sports medicine or other unrelated fields that decided to treat the endocrine system instead of their chosen specialty. I guess it pays better. I've been off sugar for two years now and moved to a lower carb diet as well. But, like you, I'm struggling with my weight. I'm crossing my fingers that the new doctor can give me a real chance to finally get a handle on this disease and start seeing some real relief for more than a few days or a month at a time. Good luck with your treatments and continue to question your doctors always! Thank you for all the great recipes.
Brenda
Thanks so much and for sharing your experience.
Sheila
You may want to check out the website:Stop the Madness, it’s about thyroid issues and talks about medication and which are beneficial and which ones mimic results but are not really helpful because the usually change just your TSH levels so they can say you are normal. Something else I was recently introduced to that has been helpful as well is LifeVantage company that has a product named Protandim, specifically the NRF2, it has been very helpful for many issues. Best wishes. Been a long time follower and admirer of your recipes and information. Thank you☺️
Brenda
Thank you so much! I'll look into that.
Lydia Worthington
Thankyou for sharing, I pray you will finally get better So many doctors don't listen when we know our bodies,if you feel something not right keep doing what your doing, play around with your diet, find the right dr.
Jen
Omg! The same thing is happening to me now going on almost 6 years. Idk who in am I cant function just to raise my arms to wash my hair or to w as l to go down stairs to the kitchen is like a 5k for me. I am in agony I lost SO MUCH WEIGHT then gain it back & then some just as fast. My Dr said it was Hashimoto but truly my thyroid goes from Hypr to hypo on any given day she diesnt know what to do for me , I am losing ALL my hair, brain fog constant buzzing in my ears , acne ( so I thought)& very puffy face & eyes . I aged 40 years in only 6 & I havent been able to Drive now for 5 years I feel out of it, drunk I felt if j continued driving I would get in an accident & worse would be danger to others on the road. This is HELL I loved to drive, workout lift weight you have no idea I miss me I am only exiting not living. All my Dr. Has done is put me on Synthroid but she doesnt do normal levels & at first seemed to help but now it's as if i am right back where i started. I am only 45 i started getting sick when i was 39 & wenf into complete menopause over night . Wth! No one is listening & days turn into months & months into years . My Daughter is watching a women who did it all age to 80 in 6 years . Idk what to do & seeing where I am taking synthroid yet I go hyper to hypo any given day how can I have Harshimo it's as if I have hashimoto & Graves in one , I also have severe GI issues, rheumatoid arthritis, sibo & IBS including Gerds ; Ulcers since I been 14 years old . But always could function & if felt flare ups coming would take day three the most off & would be better so 6 years ago when I was feeling not myself as usual.i did that but I NEVER bounced back. Idk who to turn to & I know I had Mono 2xs when i was a kid so could i have this? I am losing my mind & myself . Ty for sharing i am SO SCARED
Brenda
I don't know but I think a second or third opinion would be a good idea.
Julie Stroud
Thank you for sharing this. Twenty years ago I did allergy testing because I was experiencing some neuropathy and had painful joints. I was allergic or sensitive to so many things. My doctor looked at the list and then at me, and said, "What are you going to eat?" He was concerned, and so was I. But I got very vigilant about rotating the foods that were sensitivities, because most of them were that and not full blown allergies. To this day I remain very aware of what I've eaten and when, but I know that I can eat about everything if I don't eat it too often. Pork and turkey, for example, are "every four days" food. I hope you can find a similar balance. As for the itching - that sucks. I hope that you can find a remedy.
Brenda
Thank you, I hope so too!
Elizabeth Montgomery
Just wanted to,give you prayers and a website that Dr. KenDBerry M.D. brought to my attention. Stopthethyroidmadess.com. What can I say. Most helpful and a wealth of information. I was recently as of this week diagnosed with hypothyroidism. Thank God for my nurse practitioner who says she thinks outside the box. Started on NP thyroid meds yesterday. God Bless you as you heal. Thank you for all you do. Take care. P. S. Dr. Ken berry is on u tube.
Brenda
Yes I follow Dr.Berry thank you!
Rebecca Trujillo
Thank you for sharing. I’ve been having itchiness along my jawline and on my neck behind/below my ears. I am currently taking armpit thyroid but your experience is helpful in promoting my dr to more thoroughly evaluate my symptoms. Thank you!!
Trudy Handel
So sorry you're going through this and I hope you're better soon. I bought your book and I use that and your online recipes all the time, as my husband is allergic to nuts.
I hope you feel better soon!
Christopher
Dear Brenda,
With respect I do not believe you have epstein barr virus your symtoms scream of LYME disease.
Even IF it is Epstein Barr Virus you will not be able to defeat it with diet alone.... learn to make colloidal silver it is so safe yet it is poweful at only 5ppm it will take out ebola... I've been drinking over a liter a day in teas, coffee, soups just as a glass of water and along with diet [cutting out surgar just in my teas and no more cereal or milk for this guy] with cannibas oil and coffee enema's with liver detox via Rife Technology [Spooky2 equipment do your research] I went from barely being able to walk... massive head fog could not concentrate to constant pain in my whole body always feeling like I was hit by a truck.... I stopped it all.
Today I am healthy and doing great... and the first thing you don't do is listen to a DR FOR TREATMENT... my dr at least was honest said "I have no idea about lyme you are my first case". I was diagnosed in Jan 2016 and realized I had it for at least a year if not more prior.
Colloidal silver is AMAZING... Big Pharma is terrified the people will learn about just how incredible it is because it is simple to make with the right set up. I purchased a patented set up from a dr in Canada after trying several other systems the one I have now is awesome runs around $300 including 5 gallon fish tank which you make it in. I have had several people come to me to help where the drs could not... two clients were sceduled to have their leg amputated and foot from gangrene... one was an 85 year old woman who had sufferred with her foot infeiction for 20 years and nothing the dr's did cured it... my CS turned her around in 2 weeks she was floored.... the other client went to hospital a week before surgury and the Dr's again were floored as his leg healed and no need to amputate..... that is powerful and FACT.
Silver has been shown/hidden from the population for it's incredible healing attributes... another woman had cancer with surgery again booked 3 months down road to have all her reproductive organs removed.... again after 2 months drinking CS all day everyday along with diet... she was showing zero cancer... again dr's had egg on their faces... and why I do not trust the medical industry AT ALL... it's is fine to get a diagnosis...but as far as treatment I will never use prescription drugs are listen to Dr's who PRACTICE on my body when KNOWLEDGE IS THE KEY!
You tube has a great deal of information on CS... don't listen to the retracters who like to use a man who turned blue who said he was making/drinking CS just like i have done... he was NOT making it correctly adding salt which corrupts everything pure CS does... I'm not blue physically or emotionally lol.
I hope this helps you... I enjoy your many recipes which I forward to my mom who loves baking and wish you all the success in kicking this VIRUS out of your body.... the CS with Riffing and Oil is a powerful combination and when you learn of the power of OXYGEN via Hydrogen Peroxide [add it to CS when drinking] the results are amazing.
Look up Ed McCabe on youtube Mr. Oxygen to complete the overall knowledge required to heal ANY disease we face.
Much Love and Respect
Christopher
Brenda
Thank you but my blood test reveals the high numbers that show the Epstein bar virus in my body.
Donna Fordham
Epstein Barr Virus might be in your body along with Lyme--did you test for that as well? Also, EBV responds well to the Spooky2 rife frequency machine and so does Lyme, herpes and every other pathogen. Pathogens cause disease and illness. Synthroid isn't the answer, it just helps your SYMPTOMS. Go for a real cure with some of these alternative therapies like colloidal silver and frequency generators. Doctors won't cure you!
Esteban
Hi, could you elaborate more on this please? ... when you say Oil, and any links to hydrogen peroxide internal use thanks
"the CS with Riffing and Oil is a powerful combination and when you learn of the power of OXYGEN via Hydrogen Peroxide [add it to CS when drinking] the results are amazing."
Kathleen Quinlan
I applaud you for pushing and following your body signs and symptoms. Thyroid is a serious issue as far as I am concerned. It effects everything and can be very serious. It is also misdiagnosed or missed a high percentage of time. I know many people who have been through so many Doctor appointments. I am glad you are feeling better. I think your knowledge of food and your sensitivities will benefit too. I want to Thank You for posting this. I believe we have to search more for answer's between people, rather than take the advice of Doctor's. I am going through this kind of lack of knowledge with my Senior dog. She has heart issues , had I listened to the first 2 Vets she would most likely not still be alive. Keep us update. Your in my thoughts.
Delilah Pugsley
This post was scarily well timed, as I am battling hives currently, and they are all over my body. I think I have had them on a lower level in the past but didn't realize that is what it was. My other symptoms are insomnia, headaches, terrible PMS and heavy periods. The last couple of years I have had my eyelids swell up randomly and become very itchy.
When I was growing up my mother was diagnosed with Epstein Barr Virus and she was so extremely tired all the time. I was also diagnosed with Lyme when I was young but haven't had any major symptoms of Lyme and no bulls eye was observed after the tick bite.
I may ask my doctor to check and see if either of those are present in my system and see if they could be causing me immune/ thyroid problems. I have also had a low level auto-immune attack on my thyroid and my TSH has jumped up. I am eager to see your progress and hope you continue to feel better.
Michelle Carter
Sorry to hear that you have had such a rough time. I have gained so much from your recipes and post. Oh by the way, it is okay to “shop” for a physician that will listen to you. You are their patient and their customer. Sometimes you may have to interview a few before you find one that “gels”. Good luck. Hope you continue to get better.
Dianne Rhinesmith
I ALSO HAVE A SLUGGISH THYROID WITH 7 NODULES AND ROSACEA WHICH IS WHAT I THINK YOU HAVE. I HAVE BEEN TREATED BY DERMATOLOGISTS FOR YEARS WITH HARDLY ANY SUCUESS. I HAVE RED CHEEKS, EASILY BROKEN CAPPALARIES ON MY FACE WHICH I'VE HAD LASER TREATMENTS FOR AND FOR THE REDNESS ALSO, AND I DO GET ITCHY HIVES AND PIMPLY FLAIR UPS. I HAVE BEEN WATCHING A DERMATOLOGIST IN YOUTUBE, HER NAME IS DR. DRAY. SHE WAS THE ONE THAT HELPED ME HEAL MY FACE, I SWITCHED TO VANI CREAM AND CERA VE PRODUCTS ALL FRAGRANCE FREE, I FOUND OUT THAT ROSECEA IS A SKIN BARRIER ISSUE SO YOU APPLY THE CREAMS TO YOUR FACE WHILE IT'S STILL WET AND SEAL THE SKIN BARRIER, ALSO USE A SUN PROTECTOR, I LIKE THE PHYSICAL BARRIER SUNSCREEN AS THE CHEMICAL ONES BURN MY FACE. MY FACE STAYS PRETTY CLEAR NOW, I AM HEAT SENSITIVE AND IF I'M IN THE SUN OR IN A HOT ROOM I CAN STILL GET A HIVE OR TWO. I ALSO HAVE EBV AND HAVE TREATED THAT WITH PLENTY OF SLEEP AND ORGANIC FOODS AND VIT B'S. MY DOCTOR TOLD ME I WAS NOT A CANDIDATE FOR SYNTHROID AS LIKE YOU I WAS IN THE LOW BUT NORMAL RANGE. I NOW TAKE KELP CAPSULES WITH 600MG OF IODINE WHICH HAS STOPPED MY HAIR FROM FALLING OUT, STOPPED MY DIZZY SPELLS AND HELPED WITH MY LETHARGY. I AM HAPPY I DIDN'T START THE SYNTHROID OR DEMAND IT AS YOUR BODY WILL CEASE TO MAKE ANY THYROID HORMONES IF YOU START THE SYNTHROID. I WANT MY BODY TO TAKE CARE OF ITSELF NOT TO KEEP ADDING PILLS, I ALREADY HAVE TO TAKE BLOOD PRESSURE MEDS. I HOPE THIS GIVES YOU SOME OTHER AVENUES TO EXPLORE.
Teresa
Sounds like lupus, which I have finally been diagnosed with. Crazy symptoms, I only use supplements and food to get throught this. There are several very good thyroid supplement combos on the market that work well.
Erin Marie Flaherty
Would you mind telling how you got diagnosed? What tests? What subcategories within the tests? It's been going on for six years, and whatever it is, it's been getting progressively worse.
I'd appreciate any ideas.
Brenda
My endocrinologist did blood tests and found it. I can't remember which blood tests but she was the one who found that and hypothyroid. The testing for that is in this post I wrote:https://www.sugarfreemom.com/recipes/keto-and-hypothyroidism/
Kim
I am so sorry you have gone through this! I too had horrible symptoms for years, but my doctors would do bloodwork and say "it all looks normal." Sleeping 16 hours a day is not normal. Dry skin that flakes off your body is not normal. Carrying an extra 20 or 30 lbs or more, no matter how good you eat is not normal. I have FINALLY been optimized on thyroid medication after 8 years. I am so happy for you that you are at least on the road to feeling better!
Marin
I have an auto-inflammatory disease. Your symptoms seem ti fit in the area. You might want to research this and find a good rheumatologist
Susan
Kudos to you! It takes a LOT of courage to go public with personal information. Education is the key to it all. If you make a difference in just one life with your post, then you will have achieved a great thing. I've had numerous bouts with infectious mono. It's a REAL bear. Being proactive in one's personal/health care is as vital as education. Have the courage to tell a provider, "I disagree." If that provider still won't listen, have the courage to find one who WILL! In the meantime, I'll keep you, and others with EBV reading this, in my prayers. (P.S. Perhaps someday someone will come up with a way to better educate the listening skills of the medical community, that we are NOT whining, complaining, fussing, moaning, or just "making this up.") God Bless You!
Kathi
Brenda, you are so generous to share your stories and recipes with us. And what a challenge you have in feeding your family with the various food sensitivities and allergies you all have! Your positive outlook is as inspiring as your recipes are delicious. Best wishes for your complete healing.
Michelle
I was diagnosed with chronic Epstein Barre 4 years ago. It took its toll on my muscles and health. I totally understand where you've been .
Deborah Ring
God Bless
Bonnie
So sorry to hear about your health problems. My sister went through this same thing 40 yrs ago. Prayers for the rash to clear up & you continue to feel energized.
I did the 1st week of your Keto diet plan & lost 6 pounds! Yay!
But then---ended up with diverticulitis. So now I can't eat anything with fiber. 2 more days of antibiotics & hopefully can get back to it.
Brenda
Oh I'm so sorry! But happy you lost 6 pounds in a week that is amazing!
Diane Alise
Lifting you up in prayer for complete healing grace
Brenda
Thank you Diane!
Sue
I know how frustrated you feel, I’ve been going through the same for a few years now. I have finally been diagnosed with Hashimoto’s. There are many podcasts & articles I have read which have given me a better understanding as most Drs have extremely limited knowledge of it. I have found 1 though who I am receiving some informed help from
Below are a couple you may be interested in.
Dr Martin Rutherford & Dr Gates in Nevada- they are Funtional Medicine Practioners.
Dr Eric Berg
Dr Berry.
I wish you the best of luck.
Brenda
Yes I follow Dr Eric Berg and Dr Berry, thank you!
Rocio
Wow is funny how sometimes we go to dr and we tell how we feel and some dint listen, I'm dealing with join inflammation here and different parts of my body some days I can't hook a bra in the back or put deodorant with my left hand or do my hair is been more then a month still waiting to see a rheumatoid arthritis doctor is so hard to get in ,I hot tested lije a week ago for ciric acid (gout)still waiting for the results..so thank you for Sharing you condition with us ..that tell me I'm not alone there is some people there dealing with health issues..so happy for ypu ,you went in look for answers..best of luck?
Brenda
Thank you!
Susan
Waiting to get in to see a Dr. can seemingly take forever. Hang in there, take someone with you to appointments to write down the doctor's comments, & best of luck in your journey to better health.
victoria papa
Thank you for this!!! ive also been diagnosed with chronic epstein barr. I dont feel so alone
Pat Katz
You are an absolutely terrific role model! Thank you so much for sharing, you have made a major difference in many lives. You were the first person I followed when I went sugar-free and you helped me so very, very much, thank you! I send you light and healing energy everyday, Pat
Brenda
Thank you so much Pat!
Charlotte Moore
My goodness! You have really had a battle. Trust you continue to improve.
Brenda
Thank you Charlotte!