Epstein Barr Virus (EBV) Community
Help for People Fighting Chronic EBV
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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Help for People Fighting Chronic EBV

I wanted to post this hoping that many people will read it and that it may help someone out there struggling with chronic mono like myself. I'm still not 100% back to normal but I've felt better than I have in so long that I wanted to share my experience.

Back in 2001 at the age of 19 I was diagnosed with mono and my life completely changed. Shortly after getting mono other symptoms started that didn't seem to be something you'd get with mono. Long story short, after 2 years of being told it could be this or that I was finally diagnosed with hypothyroidism. The world was finally back to normal once I got on thyroid meds and I thought I was good to go.

Well, it was good until 2007 then my world came crashing down again. All my hypothyroid symptoms came back but bouncing from one doc to the next and switching from one drug to the next did nothing I just felt worse. I researched and researched and researched and kept telling them I felt the same way I had when I had mono but nobody ever told me you could get it again until I was informed by a wonderful person on this forum that you could and told me to have my doc test it. I listened, had it tested and sure enough I had mono again! I felt such relief but fear at the same time. I was glad it was not just in my head (like many docs suggested) or that my body would permanently reject the thyroid hormone (like I so feared).

The problem... there isn't really a cure for mono. It basically just has to burn itself out and mine was not doing it. I'd been so tired of being tired and sick I continued to look for anyone's help. I got the name of a wonderful chiropractor who deals with thyroid/hormone issues and EBV and figured what the heck. From the first appointment I knew I finally found someone who would listen. He takes a holistic approach on things and has been wonderful.

If anyone has struggled with multiple cases of mono (EBV) or chronic mono I wanted to share what I've done that has helped me more in the last few months than anything I've done in the other 2 years I've had it.

What has helped me is... figuring out food allergies. I was very wary at the beginning- I'd tried everything and nothing had worked. I've always been sooooo health conscious (studied for a degree in nutrition in college) so didn't think there was anything someone else could share about healthy foods that I didn't already know. What I found out is that I guess there has been a lot of research showing a connection to food allergies/intolerance and chronic illness. When you think about it it all makes sense. Food is a basic necessity to life so if you constantly are fueling it with things your body is rejecting it requires a ton of energy to fight that off rather than the illness. Going into this I knew I was allergic to milk (but thought I outgrew it so would eat yogurt because of the health benefits) and also had a barley allergy so I did steer clear from that but never knew barley was gluten. Truthfully those foods were good and are for many people but if you are allergic to them it's not.

My doctor put me on a 3 week diet where you cut out all foods that are known food allergens (soy, dairy, nuts, eggs, corn, alcohol, etc) and then red meat, shell fish, pork (since they are harder for the liver to process and EBV effects the liver). To make up for the nutrients you take a shake that has vitamins and digestive enzymes (it's not a weight loss shake though and only is used for those 3 weeks). After the three weeks you add one of those foods back at a time to see if your body reacts to it. If it does you know you shouldn't eat it. I found out I'm allergic to all but corn and nuts (the proper term I guess would be food intolerance since it bothers my digestive track rather than having an allergic reaction).

Midway through the diet I was the worst person to be around- moody, on edge, and cranky. I told my doc I didn't know if I could make it through but stuck it out b/c I didn't want it to fail just because I didn't give it a try. When I was done I wanted to give him the biggest hug b/c I truthfully had not felt that good since before getting mono again. Well it's six months later and I'm still staying away from my allergy foods- have had some ups and downs but am overall still feeling so much better. I've had more energy, have lost weight (b/c it's helping my thyroid), and am feeling so much better. I know I still have a way to go but I want to tell the world what a difference this has made for me. I've been sick for so long (I'm 28 and have been sick since I was 19 other than for a couple years in between).

Other than feeling the difference I'm seeing the difference in my blood work as well. Since finding out that I had mono again my docs have done blood tests to monitor my antibody levels and they weren't moving down until after getting on this diet. I think the studies are right- food allergies can prevent the body from fighting chronic illness including EBV in my case. I'm hoping that my story can help someone else to give them one other thing to at least look into and try before giving up hope.

Chel
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1137639_tn?1287859401
Chel - Wow, thanx so much for that info!  I've been struggling with long term toxic mold exposure and the illnesses that came from it.  It's the most complicated chronic illness to unravel and correct.  Candida is a condition that can come from such exposure.  I've been doing detoxes and diets and supplements for years.  I can't tell you all the problems that I've got as a result, but I've been doing the candida diet on and off for years to try to correct the candida problem but I didn't know that i was being exposed to the toxic mold in the wall and ceilings in a rental I lived in for 25 years.  Once it started to smell, I figured out why I had such illness for so long and why it just kept getting worse instead of better no matter what i did, but by then it was too late.  So much damage done to my body (and spirit).  The candida diet is helpful, but with the antibiotics I took for 10 years of 'mysterious' sinus infections, 'leaky gut' is probably an issue also.  Do you know what that is?  Food allergies become a serious problem in my condition, but testing can be so tricky.  I just started (in January) the candida, lactose free (lactose intollerant since birth), gluten free (granny was gluten intollerant, and she suffered from 'gluten rash' as I did until I gave up the gluten.  doctors kept telling me it was 'shingles'!), elimination allergy diet.  For a little while I had given up all allergic foods.  But I just had to start eating my eggs/spinach/avocado/tomatoes in the morning for breakfast again.  With such a strict diet, it's tricky to give ALL those things up.  Sometimes, I do veggie broth fasts for the weekends, but I'm so nutritionally depleted that I really crave nutritious foods.  Could you list all the foods on the allergy diet?  And tell me more about the shake?  I really don't have a thorough list.  But I've gotta say - this is a really hard diet!!!!  Thanks again for this info.  When I have more time, I'll get back to you - would love to continue to share info - gidget0711
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1137639_tn?1287859401
Chel - Oh, I forgot to mention, my bloods just came back Epstein Barr positive, but I'm a bit confused about it.  My doctor just said that she thinks it means it's 'an old infection'.  With all my horrible health problems, I don't understand how she can not think the positive blood test isn't important.  Does that sound right to you?  I've clearly been suffering from chronic fatigue and fibromyalgia and joint pain for years.  I'm so confused...  gidget0711
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291885_tn?1404896807
gidget0711- it's awful what thing like this can do to your body. I knew mold exposure can cause problems but never would have thought it would be long term.

As far as the Epstein Barr you should make sure your doctor is doing all the tests and can read it correctly. They should be running multiple tests and it's only by looking at all the numbers that they can tell if it's an old infection, a new infection, or a chronic infection (can also be when you are in the recovery phase). Some antibodies stay high for life after you've had it but others are supposed to go back down so it's by looking at those numbers that they can tell if it's a current or reactivated infection.

Epstein Barr is nasty- it just seems to do all sorts of horrible things to the immune system. It's amazing how many times I'm hearing people who have hypothyroidism, chronic fatigue, fibromyalgia, MS, who also all had EBV.

The diet that I got on I started using this stuff called ClearVite. It's basically a cleanse for the liver and so you take it for three weeks and cut out all foods that have potential for causing food allergies at the same time. During that three weeks you are trying to clear your liver of toxins and trying to clear the body of foods that could be causing you problems. Most people lose a little bit of weight from it but it's not a weight loss diet so it's not a lot and that's not the purpose of it. After the three weeks you add one food back in (the one you've been most craving) and see if you react to it (give it approx 3-5 days since sometimes it can be a delayed reaction). If you don't react than you're good- if you do you know you should stay away from it. Here are all the things you have to cut out: dairy, eggs, soy, gluten, sugar, shellfish, red meat, pork, corn, peanuts, tomatoes, and then any additional foods you are allergic to (I may be missing a few but it comes with the info packet with the ClearVite). During the second week you have to go off all meat altogether (the most difficult part of the diet) but you get to add it back the third week. At first it is really difficult but by the end it's not so bad and I felt so much better that I was glad I stuck through it.

The ideas behind the diet are 1: The liver is the main source of cleansing in the body- this is where toxins are released out of the system. When you have an illness it affects your body's way of getting rid of toxins in the body and it can effect your liver. When I got mono my liver enzymes went really high- the same thing happened when my EBV relapsed so I know that something was going on with my liver (the numbers did slowly go down over a year's time but who knows what all was going on with my liver).
2: It's a test for allergies. At the end of the diet you've removed any foods that may have been causing you inflammation in your system which helps your body to heal. After being off all those things for three weeks your body is more intune to sending signals if it doesn't like something so that when you add a food back if you shouldn't be eating it you will receive a very loud and clear signal.

It's something that worked for me (still have a long way to go but it's obvious that this helped) and I hope that it might help you too!
Chel
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650547_tn?1271776798
Thanks for the info!  Did you also cut out flour/wheat?  I've heard that is a common food allergy for a lot of people.  Just curious, thanks!
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291885_tn?1404896807
Yes I did. Cut out all gluten. If your not familiar with each of them glutens are: Barley, Rye, Oats, Wheat, and Spelt (think eyeBROWS). I've known for years I was allergic to barley but nobody ever told me it was gluten- now it makes sense. The more research I've done the more I've heard too that people allergic to gluten are often allergic to dairy and soy as well (which I'm also allergic to). Gluten is the protein found in grains and apparently the proteins in gluten, dairy and soy all have similar effects on the body in the way they are broken down- thus the reason why people tend to be allergic to all of them.
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650547_tn?1271776798
Definitely didn't know all that; thanks for the info!
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Avatar_n_tn
Sorry for my bad English, I made a translation of my text.

For 10 years I have health problems. None of the 10 doctors I saw told me do what I have. Thanks to the internet I discovered that had the Epstein Barr virus that I have.
This virus does not cause only mononucleosis. There is huge damage to the balance of the intestines (80% of the immune system is found in the intestines). This imbalance causes the proliferation of Candida albicans and the trouble begins. It may have chronic fatigue, lack of appetite, itching, bad breath, smell, allergies (especially dairy) ...
To fight effectively against this virus, first restore the health of your intestines. To do this, start by killing candida with a natural anti candida formula (such as grapefruit extract liquid: 30 drops in a glass of water 2 or 3 times a day fasting) or other forms such as candida formula ORGANIKA or another alternative natural formula anti candida (see internet).

Avoid sugary and acidic foods such as fruit juice industry, industrial sweet cakes. Reduce refined sugar. Avoid dairy cow (cow's milk, cheese, and yogurt). Take alkaline products such as bananas,

It works for me dairy goat. Goat milk and goat cheese, goat yogurt containing probiotics following: Lactobacillus acidofilus, and biffidus-casei.
It is very important to take probiotics.
Also recently, I take the goat milk kefir (you can make easily at home). These are very powerful probiotics and very good.
Try to get your immune system for dairy goat gradually.
Eat lots of fiber such as brown rice or wild black. Take powder of natural products that improve the health of the intestines as pectin.
I'll take homemade bread multi grain (flax seeds ...) grains which do not feed candida.
No alcohol.

To reduce inflammation of mononucleose (lymph nodes in the neck), take turmeric, quercetin and licorice (but not a lot of because this last one can increase blood pressure).

I'll buy and try the homeopathic remedy Monilia albicans candida granular it is another anti candidas formula..
Attention to reinfection with the virus.

I feel much better than before.
I expect you to any proposal for a new natural product to take.
It seems that a vaccine is being manufactured. Research is very promising as the stem cell transplant .

Peronne
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Avatar_n_tn
Also, do some lightweight sports to release toxins and have the appetite. Especially much sleep and avoid stress because stress weakened immune systems and therefore promotes wake Epstein-Barr virus.
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if goat milk is not ok for you,  you try kefir milk.  In kefir milk, the sugar is transformed by kefir and there is no toxines and contain strong good probiotics. But if sugar is eated by candidas, there is lot of toxines very bad for our health.

i think that we can't eradicate candidas albican when epstein barr virus is here. but we can limit proliferation and it is correct.
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Avatar_n_tn
Warning: may be that turmeric can not be recommended if your immune system is very low
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