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Epstein Barr Virus (EBV) Message Board
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Old 04-16-2003, 12:46 PM   #1
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TaniaF HB User
Question Please help me with this EBV!

I had the EBV titer test and I don't understand what this means: EB virus IgG was elevated at 111
IgM was low at 5
EBV Antigen Ab
IgG was elevated at 58
Early Antigen IgG was positive
The dr wrote "these values fit with the labs charting of chronic or reactivated disease.
Now this dr was an immunologist that was ordered to take this test. My regular dr says there is nothing you can do for EBV. So does this mean there is no medicine that can cure it or rid it from my body. I try to take vitamin/mineral supplements to help my immune system. I'm 51 and feel 81---just tired, no energy and just not the way I used to be. Can anyone help me understand about this disease and is this considered CFS? Any suggestions will be appreciated.
Thanks,
Tania

 
Old 05-05-2008, 04:19 PM   #2
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TCooks2007 HB User
Re: Please help me with this EBV!

Hi! I've been wondering the SAME thing!!!!! This is horrible! Why isn't there more research and knowledge about this virus????

I am a 43 year old woman and have been diagnosed with mono again. I first got mono the summer between my junior and senior years of high school. I had it bad and was completely in bed except for my weekly trips to the doctor for 2-3 months.

I have not been the same since then.

Then, the past 6 months - a year, I have been very stressed and pushing hard at work and other things. I started getting more and more fatigued. I started having difficulties sleeping, heart racing at times ... I got worse and worse. I also had and still have the terrible brain fog, the dizziness and light headedness, even more extreme fatigue and weakness, loss of appetite, problems eating fatty or greasy foods, memory problems, sore throat, swollen glands, flu-like symptoms, body aches, complete exhaustion ... a few weeks ago, I had blood tests run, and they came back with a diagnosis of chronic/reactivated mono.

Here are my numbers:

EBV Acute Infection Antibodies (EBV Ab VCA, IgM) ... 4 Negative (under 100 is negative.)

EBV Early Antigen (Ag, IgG) .... 134 High (again under 100 is negative) Positive

EBV Ab VCA, IgG .... 3,166 High (under 100 is negative) Positive

EBV Nuclear Antigen Ab, IgG .... 772 High (under 100 is negative) Positive

Then there was an interpretation chart:

Susceptible ... Negative VCA-IgM, Negative EA-IgG, Negative VCA-IgG, Negative NA-ABS

Acute Infection ... Positive VCA-IgM, Positive EA-IgG, Positive VCA-IgG, Positive NA-ABS

Chronic/Reactivated ... Negative VCA-IgM, Positive EA-IgG, Positive VCA-IgG, Positive NA-ABS

Old Infection ... Negative VA-IgM, Negative EA-IgG, Positive VCA-IgG, Positive NA-ABS

I am going to try taking Vitamin B. I've also heard taking Vitamin C helps.

I have heard that some people are taking Valtrex or other herpes anti-viral's and say they get better faster and don't have as many reactivations. Has anyone heard anything about this???? Others have also reported taking Famciclovir, Valcyte, Monolaurin??? Some have also reported taking collodal silver and garlic. Anyone with any knowledge of any of those or anyone try any of those???

Wow, it seems to me that the doctors I have seen don't know much about mono/glandular fever/EBV, especially when it is recurrent. Anyone know any clinics, doctors, specialists in this area? Any research in this area???

I am just not getting better, but seem worse even, but I haven't really been resting either. I hate to take off work much, but I may have to.

 
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Old 05-05-2008, 08:16 PM   #3
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jam338 HB Userjam338 HB Userjam338 HB Userjam338 HB Userjam338 HB Userjam338 HB User
Re: Please help me with this EBV!

Quote:
Originally Posted by TCooks2007 View Post
I have heard that some people are taking Valtrex or other herpes anti-viral's and say they get better faster and don't have as many reactivations. Has anyone heard anything about this???? Others have also reported taking Famciclovir, Valcyte, Monolaurin??? Some have also reported taking collodal silver and garlic. Anyone with any knowledge of any of those or anyone try any of those???

Wow, it seems to me that the doctors I have seen don't know much about mono/glandular fever/EBV, especially when it is recurrent. Anyone know any clinics, doctors, specialists in this area? Any research in this area???


Hi, yes it is appalling how little doctors know. CFS experts report that using Valtrex, 1,000mg four times daily for 6 months is usually an effective treatment protocol. However, doctors unfamiliar with the CFS treatment protocols are frequently not comfortable with this higher and longer than standard dosing protocol. I have an active case of EBV with high titers, have been mostly bedridden for over 2 years. My DH bought me a laptop so I could start researching since my doctors seem to not know as much as they should. I told them over a year ago that I suspected EBV was a factor in my illness. They had me see 2 doctors who said it was not a factor. When I insisted on seeing a doctor outside of their network I finally found a doctor who did the right tests. One must test for the right panels, and both of you have tested for those, thats good.

While I disagree a lot of things Dr. Jacob Teitlebaum says about FM, his book is a place to start, " From Fatigued to Fantastic". A new third edition is available, but from what I hear there isn't a lot of difference between the second and third editions. The second edition can be obtained very reasonably in the used books section on Amazon. The CFS viral section is pgs 77-87. I have been researching CFS/viral factors for the past 6 months and can say these 10 pages are an excellent summary.

You can copy these pages from the book and take it to your doctor for help. Seeing any of the leading CFS expert doctors is expensive, and they don't take insurance. Teitlebaum patients report a first visit with him is about $4,000. He has a website online you might check to see if there are any viral references to print out. Other well respected CFS doctors with online patient education information is Kent Holtorf, M.D.( Southern CA), A. M. Lerner, M.D. (Michigan), David Bell, M.D. (NY), Charles Lapp, M.D. (NC) Dr. Lerner's site has a free online video. Another free online video (2005) is Paul R. Cheney, M.D (NC). Dr. Cheney, Dr. Bell, and Dr. Lerner in addition to being leading CFS experts, they are also very CFS aggressive researchers. Another is Dr. Nancy Kilmas, Florida. None are less than about $3,000 for the first appt. so it is best to research online and find websites and articles they have written. They are prominent guest speakers at national and international conferences so there is much available online. Dr. Cheney and Dr. Kilmas do not have a personal website. Dr. Kilmas' work is through the University of FLA at Miami. Much of Dr. Cheney's work can be found through the Dallas Ft Worth CFIDS organization. One of his patients relocated from NC to Texas and became very active during her remission.

In regard to Valcyte, there is a recent clinical trial that just finished, yet to be published, by Dr. Joesph Montoya at Stansford (San Francisco). However, it was funded by Roche Laboratories, the manufacturer of Valcyte. The report is expected to be published this summer. Patients who participated in the study do not seem optimistic. Valcyte is a much stronger drug and can cause liver/kidney damage so enzyme levels must be monitored. It is typically used only CMV or HHV6 are positive, along with a positive EBV. EBV alone is usually treated by Valtrex. Some patients have reported success with Famvclir.

A natural antiviral is Olive Leaf Extract and garlic, some report improvement using those though I don't know what the amounts are etc. I am sure there are protocols available online.

To determine active EBV, it is based on the IgM panel. The EA panel will only show positive for about 2 weeks after exposure, then the virus will show up in the IgM panel. After the body has suppressed an active virus your antibodies in the IgG panel will rise.

Good information about EBV is available at the following government website:
[url]http://www.cdc.gov/ncidod/diseases/ebv.htm[/url]

Anyway, hope this helps you out

 
Old 05-18-2008, 08:39 PM   #4
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ladybugmandy HB User
Re: Please help me with this EBV!

valtrex helps with EBV. can you see dr. a. martin lerner in MI? he is the expert.

sue

 
Old 05-19-2008, 02:32 AM   #5
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David 12321 HB User
Re: Please help me with this EBV!

I have the best doctor I've found in understanding cfs. He says the whole ebv titer and all that goes with it is speculation with no proof it's actually what is causing us to be sick. I must admit that it raised my eyebrows quite a bit and I was very surprised but over the years I haven't seen anything that negates what he said. He said a person can spend their whole life chasing cures and end up even sicker from the meds than when they started and I have to say that happened to me a lot. At one point I was taking anything that was offered and now I just treat the symptoms and as I've said: eat well, live well and exercise. I'm NOT saying ebv is not legit. My titers were through the ceiling when I had them. However, I have not had one done for over 14 years and I'm none the worse for it. Again, I'm NOT saying ebv is not legit. It was the first title this disease had, then it was called chronic immune dysfunction syndrome and then (as far as I can remember, it's been 28 years) chronic fatigue syndrome. I'm surprised to hear Epstein Barr Virus mentioned, to be honest. It must be used by some doctors to come to a diagnosis but I haven't heard it mentioned by any medical professionals I know for years and years. Funny how little they know about cfs all these years later. As far as research...we can hope. As more and more people come down with this, the drug companies are furiously trying to develop meds for it but none I know of to date. Even the whole lyrica thing for Fibro isn't really helping that many people. I mention it because so many have cfs and fibro including myself. We are pioneers folks, like it or not!

 
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