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Epstein Barr Virus (EBV) Community
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Avatar universal

NEWLY DIAGNOSED WITH EPSTEIN BARR

Hi,

   I am coming to this forum in hopes of getting some help and support and also lending some to others if I can.  Mine is a long story and I will condense it - In Dec 2007, after being on Armour thyroid for 40 years, I started having heart palpitations and after several decreases in medication, and continuation of heart palpitations, I was switched to Synthroid.    In July I changed to a woman doctor who was highly recommended in balancing the hormones - adrenals, female, thyroid, etc.  She did more tests and all this time I still felt like I had the flu and just awful.  The testing showed adrenal fatigue, female hormones low, thyroid off....anyway after all those months, in late Aug she said she wanted to test me for Epstein Barr Virus.  I thought it was rather odd, but was tested and on Sep 8th found out that I tested positive.  Of the four number markers in the blood test for the virus the first two had already gone back to normal, but the last two are both in the 500's -  which she said I am in the convalencent or recovery stage. .  After being diagnosed about three weeks ago, it seems I feel even worse - flu like all the time and exhausted.  Probably just crashed after all the stress of all those months and also knowing that there is no treatment for the virus.  I am now doing very little and have no motivation to.  Depression I am sure is a part, plus the virus itself.  The doctor is giving me I. V.'s of vitamins to build my immune system which I am sure is depleted.  I also just started to try acupuncture to see if that will help my energy.  

Right now, I am at my wits end and wonder if I will ever feel any better or should I get used to this forever?  That makes life hardly worth living.  The doctors and nurses there reassure me that this takes time and my body has to fight this virus. Anyway, anyone who can inform me without scaring me to death - trying to keep my stress level down as that is surely not good for any of this.  I just want to cry all the time.  My life this year has been the worst ever and I know lots of people are a whole lot worse off than this - I know that and I am thankful for my life.  But I have basically had to give up the things I love to do little by little and right now since the diagnosis - and feeling worse - that is hard to figure out. ?

Thanks,
Liz
20 Responses
Avatar universal
Sorry for hearing this. My story is somehow similar. In my case I had EBV well before having hypothyroid.

November last year I was diagnosed with Hypothyroid and Hasymoto. The doctor started me on Levothyroxine 75mcg. I was OK for a while but I was not having the energy I used to have. During the summer, I start feeling very tired. I went back to the doctor and after the blood test results my THS was back up and I was positive for chronic EBV, that translates into Chronic Fatigue Syndrome. The doctor put me on Armour. I was happy for a few weeks, the energy was back up but I start having the flu symptoms specific for the EBV, sore throat, low fever, joint pains. I start taking high doses of vitamin C, Bs, multi and eventually my sore throat vent away. What I am left with is with chest pains and hart palpitations, especially after taking the Armour.

EBV and CFS I had all my life. Even I was just diagnosed I know I had this from my childhood, always getting sick with sore throat, tired, hard to do physical activity.

I am not an expert on EBV, I am learning but from my experience so far, vitamin C is helping me the most when I have the symptoms. There are people in this forum that are experts in this subject (PlateletGal), they will help you a lot. But for now just take your vitamins and lots of C. I am using the Emergen-C, these are powder packs with 1000mg of C plus other vitamins. To get your energy back you'll need some type of T3, maybe Cytomel. I believe I will have to switch myself back to Levothyroxine as the Armour is giving me all these hart problems.

I hope I helped a little.
And check the EBV and CFS forums.
Avatar universal
Hi,

   Thanks for your information on the thyroid and EBV.  Right now I am not functioning well at all and am having the high doses of vitamins once a week at the doctor's office.  Perhaps I should take more Vitamin C at home - I could ask her.  Right now I feel like I have the flu all the time and do have heart palpitations too - I am on Armour type thyroid medicine called Naturethroid - same thing - different manufacturer.

   I hope I will hear from some of the experts on this board too - and thanks for sharing your experience.  I am praying that soon I will feel like getting out of bed - I do - but force myself to do anything much at all.

    Do you take Vitamin C when you have heart palpitations?  I also have adrenal fatigue which that and thyroid all have the same symptoms - so hard to tell which is what.

Thanks again,
Liz
Avatar universal
I do take Vitamin C all the time, especially when I feel sick. How I told you I use the powder one as it's not upsetting my stomach. I take about 3 to 4 a day. If you do not have use lemonade or make your own with lemons. It's no problem for the heart. In fact my doctor told me it's the only treatment he knows for the EBV.
I also took the Airborne, it's supporting the immune system.
I will eventually try one of the protocols for EBV as this is a disease that can create lots of complications. If you'll read the archives for this forum you'll find more info on these.
Avatar universal

Hi ! I am so glad that you are here and have found this forum. Thyroid problems are common in people with chronic EBV or CFS. This is what a physician who regularly sees CFS patients says about this. You may want to discuss this with your physician because he found that the regular thyroid medications don't work as well for CFS patients :

T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."


Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39

I hope that you will stick around and continue to post here or on the fibro / CFS board. Some people with chronic EBV can recover... but the majority do not. That is why I would strongly recommend doing everything now to get well and I would also consider seeing a CFS specialist.

Best,

PlateletGal

Avatar universal
Hi,

   Thanks for the information on thyroid and CFS.  The doctor I am going to is very familiar with CFS and has treated many patients with it over the years.  She is the one that came up with me being tested for the Epstein Barr Virus and turned out I was positive.  I have been to other doctors.  She seems to know a lot about it so I am sticking with her for now.  Question - do all people with CFS have Epstein Barr Virus and vice versa?  I know mono comes from this virus - but I don't have mono - and she said what I have is not contagious as mono is - so I guess it is CFS.  My adrenals are fatigued from all the months of stress and thyroid problems.  She has me on natural thyroid and that is what I was on for 40 years and then in Dec 2007 stated with the heart palpitations - in hindsight that could have been from stressed adrenals.  I have read about all of this since this all started and knew nothing before at all because it didn't matter.  She said that I have had this for a while and the first two markers in the blood test are back at normal and the two other markers are still high - they are both in 500's - I don't know about these numbers and how high that is or what.  It doesn't matter because I know how I feel and that is what is important.  I was so stressed before that I think I kicked my whole system even more out of balance and then when I found out I had this about 3 weeks ago- I have totally crashed and walk around like a zombie - just going to the doctors is about my social life.  Anyway, I am just trying to rest, take the vitamin I. V.'s, doing acupuncture and trying to eat well.  I don't know what else to do.  Waiting for the day to feel even a tiny bit better and also keeping my head on straight has been so hard for months on end.  Trying to stay positive becomes my daily challenge.  Are you saying if I get well, I won't have CEBV?  I don't totally understand all of this.  My doctor said I would get well, but if I get too stressed could have a reoccurrence.  Wow - no thanks.

I will keep in touch,  Thanks,
Liz
Avatar universal
Liz,

Keep your head up, you are amoung friends here,  I think we all at some point have spent countless $$$$$ and time with Doc to know how you feel.  From what I can gather it takes time for your body to heal, there are things you can do to help it such as the Vitamins you are taking,etc  But probable the most important is try to keep your stress down, this will help your body heal.  You have friends here.  Padro
Avatar universal

Hi Liz,

Not all people who have CFS have the Epstein Barr Virus. I think in my case the EBV was the trigger.

Adrenal fatigue is very common in CFS and studies have shown that we have low AM cortisol levels. There is a natural product that can help with this... you may want to ask your physician about taking licorice (in tincture form).

I hope that you will stick around and even consider joining the fibromyalgia / CFS board. In a week or so... we will have a physician who knows about CFS and fibromyalgia and he will be answering members questions.

Here's the link :

http://www.medhelp.org/forums/show/44?personal_page_id=1064

Avatar universal
Hi again,

   Thanks for your info.  I kept the link for the fibromyalgia/CFS board - I will have to check in there to see when the physician is there - what will it be a chat? - how will that work - you think next week?

    When did you have EBV?  How long did that last - I know everyone is different.  Then you developed CFS from that?  I just found out three weeks ago that I had the EBV but I have not been well since Dec 2007 - I wrote that whole story to you in my other post.  When I wake up have heart racing, panic feeling - guess that is the adrenals.  But now I think my thyroid medicine was increased too much, so my doctor cut it back today because the heart beating faster is lasting all day instead of slowing down by evening.  This is all connected, but so hard to figure out what is what.

    Right now I do very little except go to the doctors - I can drive - but when I am home - I do a few things a lie down.....it is more than depressing as you know and I keep trying to keep my chin up, but after not feeling well since Dec 2007 - it is harder and harder.

     How are you doing right now?  Are you able to function well?
Thanks for all your info and I will definitely be keeping in touch and checking into the other board.

Liz
Avatar universal
Oh, I forgot - thanks for the info on licorice - I think I have seen that somewhere - what is tincture form?  That is for adrenal fatigue - right?

Liz
523927 tn?1257018704
My EBV, or CEBV, has been going on since Feb. 2008. Cardiac symptoms is what first started, or at least what I finally noticed, and since that time I've had a multitude of rotating symptoms. Week in and week out, or day-to-day, the symptoms I am feeling can change. I've had a lot of medical work-ups, not quite everything in my opinion, and the best answer I can get is viral, probably chronic EBV.

My symptom list (which I think you have already seen):
Chest pain
Palpitations
Heart flutter
Shortness of breath
Ringing in ears
Headaches, mild
Irritated eyes, conjunctivitis
Vision change? Right eye mainly.
Sore neck, mainly right side
Neck throbbing
Tingling in face
Sore jaw
Sore muscles
Hip pain
Numbness/tingling in feet/legs and arms/fingers
Frequent urination
Epidimititis (testicles)
Lack of sex drive
Prostate slightly enlarged
Low fever (but not very often)
Night sweats (but not very often)
Malaise feeling
Fatigue, but I don't get it real bad
Swollen lymph nodes, sometimes tender (neck, armpits, groin)
Sore throat
Back pain
Abdominal pain
Acid reflux
Skin rashes, changes in moles (?)
Bruising (but not too often)

It's a crazy list when I look at it. Maybe it's all related and maybe some of it's not. PlateletGal turned me onto the Co-Cure's good doctor list and I've had a couple of appointments with the doctor in my area. He's been very interesting, very knowledgeable, and he thinks I'm fighting a virus, my adrenals are wiped out, and my thyroid is probably off. The goal right now for me is to try and get the adrenals working again and then get the immune system and thyroid working right. He did have me do the more in-depth thyroid antibody tests and they all came back okay. Some numbers were on the low end of the acceptable range, but nothing stood out. However, he did say you could have good blood results and still have a thyroid that's working off, especially if other parts of your body are dysfunctioning.

Interestingly, the way he was able to clinically decide my adrenals are dysfunctioning is a simple blood pressure test. He would have me sit in a chair and measure my blood pressure (the normal practice). He would then have me stand up and he would take my blood pressure after about 5-10 seconds. What should happen is your blood pressure rises from standing up. Mine did not and it stayed the same. He said that's a good sign the adrenals are fatigued.

Another simple test I am running for him is my body temperature in the morning when I wake up. I have to stay in bed and measure my temperature first before getting up. Once I have measured 5 days worth, I'll send him the report for our next visit. My extremities get cold often, I'm a thin guy, but dysfunction is the adrenals and thyroid can cause low body temperature. I've noticed that my body temp is usually 96 point something, which is low.

He is also a homeopathic doctor and has natural medications formulated under his name for his patients. He gave me some homeopathic sublingual tablets for my palpitations and they have worked great so far. He also gave me some capsules for my immune system and my adrenals. Not sure of the effects of these yet, but I did notice the adrenal formula contains licorice.

A tincture is in liquid form and generally comes in a small bottle with an eye dropper. Some holistic doctors formulate their own stuff in tincture form and tinctures can also be found at health food stores (i.e. - Vitamin Cottage, Whole Foods, etc). I haven't looked for licorice in a tincture form out on the shelves, but it's probably out there to be bought.

My current vitamin/medication list:
Microbojen (and then Virogen when I run out) - Jernigan's formula
Anti-Neuro Toxin II - Jernigan's formula
Molybdenum - Jernigan's formula
Inderal (prescription for palpitations)
Vitamin D3
Multivitamin
Immune support (from Co-Cure doc)
Adrenal support (from Co-Cure doc)
Palpitation remedy and sleep aid (from Co-Cure doc, use when needed)
Omega-3
CoQ10
Probiotics
Vitamin C
L-Lysine (supposed to suppress EBV)
Various herbal tinctures from my holistic doc
Camu Camu powder (tripleW -dot- wholeworldbotanicals -dot- com)
Echinacea (but only because I caught a cold a week ago)

The Jernigan's stuff can be found at tripleW -dot- jnutra -dot- com.

Overall, I'm still stumped about how I feel day in and day out. It would be nice to have a concise medical answer about my condition, but it's starting to appear I will be one of those evaluations by clinical analysis, so basically rule out a bunch of stuff and then they tell you, "Well, you must have this". This is the common practice for CFS patients.

I'm persistent though and I do have medical insurance, so I'm going to keep after everybody until I'm comfortable about my situation. I figure I've paid enough to insurance companies through the years that this is my way at getting back at them.
Avatar universal

Hi ott70 --- it's great to hear from you. And yes, I recognize ALL of your symptoms. Been there and done that at one time or another ! I even had blurry vision on and off for a few times over the last five or so years.

523927 tn?1257018704
Well, maybe not the male symptoms! At least I hope not!! lol
Avatar universal

Uh... no ! And I don't need anymore bizarre health related problems !!!  ; ^)
Avatar universal
Hi,

   Thanks for all the information - it is very helpful. Sounds like we started all of this around the same time - mine was Dec 2007 - although I made it through the holidays pretty well. In January 2008 started with the heart palpitations and it has been a nightmare ever since.  My adrenals are off, yes, and I don't take nearly what you are taking - but recognize some that I am.  Just learned Sep 8th that I tested positive for EBV.  Feel like I have the flu all the time and can only do a couple of small things and have to rest....never, ever feel good - always tired and as I said flu-like.  That is the best way to describe.  We had to lower my thyroid meds yesterday as my heart was beating fast again - that can be from all three conditions though..adrenals too.

   Do keep in touch and I will too and let each other know how things are going.  It really helps to have friends who truly understand what you are going through.

   What about you - are you able to function?  

Liz
523927 tn?1257018704
Fortunately, I can still function day-to-day fine. My exercise level has gone down and I try to avoid strenuous work. That frustrates me a little. Work-wise, I know that I have taken less than 5 days of sick time. Lots of doctors appointments, but very few full sick work days. So I'm probably lucky in that regard. However, there are definitely days I want to just lie in bed.

I did have a four day trip to Vegas in August and ended up feeling like crud the whole time. I had a lot of cardiac symptoms and had to cancel the trip a day early. Definitely didn't have time to enjoy the sights.

Although I function okay day-to-day, it is frustrating to know something is rampant in your system and you never know when the next set of symptoms is going to hit you -- just had a heart flutter while typing this -- or if the next batch of symptoms is going to be worse than before.
Avatar universal
Liz,

What is your primary saying about your condition, and what testing have you had so far??
Avatar universal

P.S. ~ I've also read that Dr. Nicholson has CFS himself.
Avatar universal
Hi I would like to know how are you dealing with ebv...
I am afraid that I have this..:(
Avatar universal
Hi I would like to know how are you dealing with ebv...
I am afraid that I have this..:(
Avatar universal
Hi Liz, sorry to hear about your struggles, it's not easy but don't give up. There's a light at the end of the tunnel...always! Have you read Anthony William books - Medical Medium, Thyroid Healing, Life-Changing Foods and coming out in October Liver Rescue? If you haven't, I highly recommend it. There he talks about all of your symptoms and some....how to treat it yourself and overcome it... etc, etc.   GOOD LUCK!    
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