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epstein barr

I went to see allergist for my allergies and got skin test to see what I am allergic to but skin test came back with no allergies. He is still doing more allergy skin test next week but in the mean time he thinks my inmunne system is low. I have symptoms of low inmunne system,swollen lympth nodes, and fatigue( I can sleep 10 to 15 hours a day) so he tested me for epstein barr virus. I tested positve and I don't understand much of it. What does this mean-
Epstein Barr Cap IgG AB is H 6.33-interpretation-positive-reference range is 0.00 to 0.90
EBV Capsid AB,IgM is 0.10-interpretation-negetive
EBV Nuclear AG (EBNA) IGG is H >5.00-interpretation-positive-reference range is 0.00 to 0.90

Does this mean I really have the epstein virus?
Is there anything out there to help with fatigue?

I go back to the allergist/inmunno doctor next week about my positive test results. I can go tomorrow but I can't leave work early so appointment is set for early next week.


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Avatar universal
I was diagnosed Dec 2014 with recent Mono infection due to a lab test showing Anti VCA IgM <10 and my Anti VCA IgG number was 141.  5 months later another blood test showed my Anti VCA IgG number was 155.   I have not had another test since, but have been to several other doctors because of recurring symptoms and they all say that those tests just show that I had Mono at some point in my life and blow it off!  I am so confused by what they tell me versus everything I read online about elevated EBV IgG number can be associated with so many other diseases.
Any comments/help would be greatly appreciated!!!
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Avatar universal
GLUTEN IS ATTACKING YOUR INTESTINES AND CREATING AUTOIMMUNE RESPONSES AND MALABSORPTION OF NUTRIENTS AND MINERALS.  

IT IS THE ONLY THING CAUSING EPSTEIN'S BARR VIRUS TO BE A PROBLEM IN YOUR LIFE.

IT IS NATURAL THE BE COMPLETELY HEALTHY, YOU DON'T NEED ANY MEDICINE OR HELP TO GET BETTER,

BUT 100 PERCENT NO GLUTEN WILL CURE YOU
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443898 tn?1229700080
It is true that a majority of adults who are tested for EBV will have a positive reaction.  A lot of times a person with positive EBV will also test positive for mono; however, this is more common among teenagers and young adults.  Given your symptoms of extreme fatigue and a positive EBV, I would be willing to bet that you may have some sort of autoimmune disorder such as autoimmune thyroid disorder to name one.  It seems as if persons with autoimmune disorders test positive for EBV.  If your symptoms persist, I would ask your MD to order some blood testing to test for thyroid dysfunction or inflammatory conditions, especially if anything like this tends to run in your family.  IN the meantime, you might try a super B supplement about mid-morning, this might help your energy level-  It will turn your urine bright yellow, though, so don't be alarmed.
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Avatar universal
I suffered monumentally for 6 years (from age 40-46) with an elevated epstein barr infection and had no idea what was going on. My fatigue, headache, irritability and sensitivity to sound and temperature  was misdiagnosed everywhere I went, including the Mayo Clinic back in 2002.

The one thing that helped me was a gluten free diet, but it only improved my symptoms about 40%. Strangely, prior to me falling ill, gluten was never a problem...there was some correlation between gluten and Epstein Barr with me, or one heck of a coincidence.

Finally, in December of 2006, an ENT I was seeing noticed from my previous and current bloodwork, that I had an Elevated Epstein Barr Virus over those 6 years. He perscribed me Famvir500 and on the 12 day of taking it I got my life back. The change was so dramatic, the difference so profound I cannot put in words.

I noticed the Epstein Barr would reactivate during times of stress or sickness and woukld have to go back on Famvir, so I researched the EEBV more and found red marine algae dumontaiciacea to help kep it at bay. I have not had an elevation in the virus in over 4 months since taking the algea.
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Avatar universal
At the end of August I came down with a severe case of hives.  My doctor sent me to an allergist.  The allergist did a lot of blood work on me.  It came back that I have the antibodies for EBV.  Over the past few weeks, the allergist has been doing a number of scratch tests to determine the cause of the hives but so far nothing has shown up.  He is now telling me that the hives may be connected to the EBV.  Has anyone else had hives as a symptom of EBV?  Can they be a symptom of EBV?  
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Avatar universal
Both of my kids have CFS & it has been extremely painful to watch them and everything they've had to give up because they simply don't have any stamina to do much of anything.  Many of their friends have a hard time understanding--the school hasTRIED to be understanding, but they have to keep up the school standards (meaning they penalize kids for absences even when caused by a medical condition we have documented time & again at their request).

It is hard for those of us who love patients with CFS to be so helpless to help and watch life passing by our loved ones.  I hope you have some success with the Marshall Protocol.  My kids haven't been very willing to go on any strict diet--they had a very hard time giving up milk protien to see if it would help (as suggested by Dr. Peter Rowe of Johns Hopkins who has found that many patients benefit from avoiding ALL milk protiens).  It didn't seem to matter at all to the kids, other than making them grumpier than ever to be deprived of foods they enjoyed AND feeling awful as usual.
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Avatar universal

I got it confused... sorry. Your daughter is very blessed to have such an understanding and caring mother. I wish my mother was as understanding as you, when it comes to this terrible illness.

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Avatar universal
She will be trying Valcyte (generic name valganciclovir) to see whether it helps.  Earlier trials of Ampligen didn't seem to help all that many patients.  This anti-viral seems to be more successful.  It helpe 21 of 25 patients in one study & 9 of 12 in the other.  I'm keeping my fingers crossed it makes a difference for her!
Starion
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Avatar universal

Good luck with the ampligen treatment ! I hope that your daughter's physician will be able to prescribe it for you.

If you can, let me know what happens.... you can start a new post and I'm sure I'll see it.

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Avatar universal
Hi,PlateletGal!
Glad that the Marshall Protocol is working for you.  I had never heard of it.  We're going to try the anti-viral that the Stanford clinic recommends, since my D's HHV6 numbers are so high.  The doctor treating my D will contact the doctor at Stanford doing the research for more info as needed.

My D did pass out once in class as she was walking out the door & scared everyone.  She's been dizzy a few other times , but otherwise does pretty well.  Have you tried Florinef &/or Toprol?  It helps some patients.  It didn't really help my kids much.

CFS & POTS are really tough--so poorly understood and treatments all seem so "hit & miss," with mostly misses.
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Avatar universal

Hi Starion,

I also have POTS. I had one scary episode where my BP dropped over 20 points and I was sweating, disoriented and couldn't see for a few moments ! It was frightening.

My physician is ordering HHV6 titers on me. I read about that research protocol at Stanford University. Right now I'm on the Marshall Protocol and despite the side effects (which means the protocol is working because it is killing bacteria), I know I've made progress. For one thing, I can eat wheat now and when I recently took a break from the protocol, I saw how much progress I've made.
I had more strength and energy. I am thankful for this protocol, but hope we have a cure one day for CFIDS. This is one illness that I would not wish on anyone... well maybe a physician or a politician.. but just for a couple of weeks or so. ; ^)  (J/K --- then again, maybe not!)

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Avatar universal
Yea, we just got back some blood test results on my kids.  One of them had a 640 for HHV6 (the allergist who ordered the test said hers was 20 so kiddo's is VERY high).  CFS is indeed the disease with 1000 names and a lot of patchwork treatment that is aimed at symptomatic relief.
My other kid had gastroparesis for months that finally resolved but flares from time to time.  He had elevated EBV rates that are now approaching the normal range.
Both teens have been diagnosed with insidious onset CFS as well as Postural Orthostatic Tachycardia (POTS) & Neurally Mediated Hypotension (NMH).  These conditions commonly co-exist, particularly in kids & teens.  It is challenging--they have both had their conditions for about six years & it flares and gets somewhat better.  They are considered fortunate as they are able to function somewhat, though they're always exhausted.
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Avatar universal

Hey --- its good to see another person who is interested in EBV and CFS posting !  = )

I was wondering if you read the recent studies about HHV-6 possibly playing a role in CFS, MS and  mesial temporal lobe epilepsy ? Also, one physician says that all of her cancer patients' are testing postiive for lyme disease and she is doing further research on this.

Fascinating stuff to say the least.
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Avatar universal
Shelly45,

As I related on another Medhelp forum, where I asked a Dr. questions in regard to another area of symptoms I have with this, I use unusual methods to get input on concerns I have. On the other forum I didn't mention EBV at all, just to see what particular symptoms I have might mean.
I've actually done a great amount of reseach for over four years on EBV and as PlateletGal relates, EBV is not the only proposed cause of CFS, there are other viruses that may also cause it, such as chlamydia pneumonia but some research also states that autoimmune diseases, chronic stress, etc... are all possible triggers. EBV however, is the virus most often found in CFS patients but could also be because such a large percent of the population tests postive for it.
More search linking EBV to not only CFS but also MS, has been conducted since 2003 and especially a more significant study released just last year (2006), which further confirms hoe serious the virus can be. Some resarch also concludes EBV to be a cause of certain type of cancer.
Most sources, even reputable ones like the CDC, in the past, provide information on EBV, only as it related to actual mononucleosis and when they refer to "reactivation", they are actually referring to reactivation of mono, that can happen within months of having EBV virus, with or without initial mono manifestations. I feel with the more recent research, this view will be changing.
When you get a chance, read these links:

"Therefore the authors believe that it is important recognize that EBV can cause a myriad of neurological illness with or without the stigmata of infectious mononucleosis and recommend the need to suspect this infection in any acute neurologic disorder."

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15034320&dopt=Abstract

"In summary, the presence of chlamydia pneumoniae in patients with neurological diseases is a common phenomenon and is not restricted to MS patients."

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11357948&dopt=Abstract

"Although it remains unclear why EBV might increase the risk for multiple sclerosis, researchers suspect that the virus alters the body's immune system, making it more susceptible to MS.
..."

"Between 1995 and 1999, the researchers examined medical records and selected 42 people with MS, as well as 79 individuals matched for age and other factors, who did not have MS. Then they gathered and tested blood samples from each participant, looking for blood levels of antibodies against EBV, indicating exposure to the virus.

Of the people with MS, 36 women and six men experienced their first symptoms at an average age of 45 years -- an average 15 years after their blood was collected. These patients had significantly higher concentrations of EBV antibodies compared with those who didn't develop multiple sclerosis, the researchers found.

Patients who had four times the level of EBV antibodies were twice as likely to develop MS. These high levels of EBV antibodies were evident 15 to 20 years before the patients showed the first neurological symptoms of multiple sclerosis and remained higher afterward, Ascherio's team reported."

(In my case, my EBV titers were over 10 times the normal range.)

www.multiplesclerosis.com/admin/templates/?a=287&z=0

"By Dr. Charles M. Poser, MD, FRCP (GLE)
Visiting Professor of Neurology,
Harvard Medical School

An alarming number of CFS patients are misdiagnosed with multiple sclerois (MS). The severity and symptoms of chronic fatigue syndrome (CFS) fluctuate and sometimes mimic the relapses and remissions of MS. In addition, when health care practitioners suspect a patient has MS, they almost always refer the patient to a neurologist, who then sends them for magnetic resonance imaging (MRI) testing. Today, unusual cerebral white matter on MRI tests often automatically leads to the diagnosis of MS.

In a review of 366 patients referred to me who had been diagnosed with MS by a board-certified neurologist, only 236 patients (65%) had been correctly diagnosed. An astounding 28 (22%) actually had CFS."

www.cfids.org/archives/2000rr/2000-rr4-article03.asp


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Avatar universal

Hi Shelly,

Just to let you know the latest research shows that CFS isn't necessarily caused by EBV --- it could be a number of viruses and/or multiple infections. Your immune system could just be worn down right now. One test your physician may want to order on you is immunoglobins -- IgA test.

Good luck. One thing you may try is seeing a Naturopathic physician. They tend to spend a lot more time with their patients' and IMO... know a lot about these immune conditions and seem to understand it more. They always know how to treat these things as well. One thing that may give you a boost of energy is buying raw & unfiltered apple cider vinegar and adding 2T to your water. I do this and I swear it gives me a boost (and I have CFS !) You can do some research online about this. I know it has helped me. It has to be the raw and unfiltered stuff though... Bragg's is the brand that sells it.

I hope you feel better soon.

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Avatar universal
I do have problems with my inmunne system so I do catch every cold or bug around. I was diagnose with severe gastroparesis 4 years ago and have flare ups. This was caused by a virus. They now think that the virus was epstein barr that caused the gastroparesis but I won't know until next week when I go see the doctor. Somebody told me at work that they heard epstein barr virus and gastroparesis are linked together some how (I work in healthcare field) and found an article she will give it to me on Monday to bring it to the doctor's appointment. I am just hoping that this is my true link to my cause of gastroparesis and we can get it all under control. I hope that my inmunne system improve so I can have a better fall/winter this year. Also this fatigue started asround the same time as gastroparesis started so it could be chronic fatigue syndrome or something. I will know more on Monday I see my pcp because she just found out it came back positive and she called me today to see her on Monday about the findings so her and allergist/inmuno doctor could work together on what to do next.
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Avatar universal

If you've had symptoms for over 6 months, you should talk to your physician about CFS.

SUMMARY OF INTERPRETATION

The diagnosis of EBV infection is summarized as follows:

Susceptibility
If antibodies to the viral capsid antigen are not detected, the patient is susceptible to EBV infection.

Primary Infection
Primary EBV infection is indicated if IgM antibody to the viral capsid antigen is present and antibody to EBV nuclear antigen, or EBNA, is absent. A rising or high IgG antibody to the viral capsid antigen and negative antibody to EBNA after at least 4 weeks of illness is also strongly suggestive of primary infection. In addition, 80% of patients with active EBV infection produce antibody to early antigen.

Past Infection
If antibodies to both the viral capsid antigen and EBNA are present, then past infection (from 4 to 6 months to years earlier) is indicated. Since 95% of adults have been infected with EBV, most adults will show antibodies to EBV from infection years earlier. High or elevated antibody levels may be present for years and are not diagnostic of recent infection.

Reactivation
In the presence of antibodies to EBNA, an elevation of antibodies to early antigen suggests reactivation. However, when EBV antibody to the early antigen test is present, this result does not automatically indicate that a patient's current medical condition is caused by EBV. A number of healthy people with no symptoms have antibodies to the EBV early antigen for years after their initial EBV infection. Many times reactivation occurs subclinically.

Chronic EBV Infection
Reliable laboratory evidence for continued active EBV infection is very seldom found in patients who have been ill for more than 4 months. When the illness lasts more than 6 months, it should be investigated to see if other causes of chronic illness or CFS are present.

http://www.cdc.gov/ncidod/diseases/ebv.htm
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Avatar universal

Any other symptoms --- do you wake up feeling refreshed ? Do you have muscle aches ? Do you have memory problems ? Do you catch every cold or flu bug that is going around ? Do you get severe headaches ?
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Avatar universal
shelly45

This is interesting to me because I am also seeking more info on EBV, also having tested positive for it and having same symptoms as you. I also have Hashimoto's Hypothyroidism, which I also believe was caused by EBV. Autoimmune thyroid runs in families and none of my family has had Hashimoto's, so I believe mono as a child and having high titers of EBNA, are the cause of it and also of neuro type symptoms I have in addition to fatigue and sore neck lymph nodes.
More medical research has been published in the past three years and especially in 2006, linking EBV to MS and other neurological disorders but more so in people with high elevations of the virus in their systems. As much as 80 to 95% of the population tests positive for EBV but some of us with compromised immune systems (immune deficiency), have the higher elevations and rish for neuro problems and Chronic Fatigue Syndrome.
My lab used a different type reference range but my EBNA result was "218" and the normal range was <20. In other words, the result would need to be below 20 to be negative and my result was over 10 times this.
I hope we both are able to get more answers because for many years Dr.s did not take EBV seriously but I don't how they can keep this attitude with all of the research recently done.
CAN ANYONE ELSE OUT THERE HELP SHELLY45 AND I WITH ANY ADDITIONAL INFO.?   THANKS EVERYONE!
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