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Posted 11/21/2010 1:38 AM (GMT 0)
my ebv was 600 normal  is16 or 18, i asked my physician assistant how she KNEW  that  600 number was indicative of an old infection and not a new one. Frankly, I did not understand her answer.  Does anybody know? I ask because I am just steadily going down hill and have made up my mind to go back on abx.  But what if what I am experiencing is EBV/  too bad we don't have a dr. on here,  She seems sure its old how does she know/  I suspect a person with active lyme (depending on the type) might show a very high level of viral inf in their body. thanks for any thoughts. lisa
Posted 11/21/2010 2:34 AM (GMT 0)
Roses, I'm no Dr, but EBV seems to be pretty common for those of us w/ Lyme. My LLMD mumbled 'chronic mono' and my numbers were not as high as yours, but were highlighted 'high out of range'. An old EBV can become reactivated w/ severe stress, immune disorders, etc. It's another 'which came first'?

Were our bodies not able to fight the Lyme because we have EBV? Or did we fall suspeptible to EBV because we have Lyme? I am anxious to have my LLMD test me again for this now that I've been on meds for awhile. I am counting on getting over these viruses as I get over Lyme and my immune system strenghtens.

And yes, we seem to have high levels of viral infections. My numbers were high on every one the Dr tested for. See signature.

I'm sure someone else on here can elaborate more.
Posted 11/21/2010 4:29 AM (GMT 0)
The crazy part is my P A says its an old infection and has nothing to do with what is going on with me now. How can she KNOW this? How can one tell an old infection from a new?

maybe a high ebv titer will help clinicians do their clinical diagnosis. Researchers should check it out.
Posted 11/21/2010 4:01 PM (GMT 0)
Roses,

Sorry -- maybe I did not understand -- was yours not a titer test? Mine was, and come to think of it, numbers in the hundreds weren't applicable. Because I had a titer test and I don't have it right here, but I think it was over 5. The test interpretation was 'past infection', even tho it was bolded 'high out of range' and the Dr called it chronic mono. I've come to learn that EBV is not the same thing as mono, but it causes mono.

I have an old friend -- we have only briefly connected thru facebook -- who said she went thru several years of chronic illness and it turned out that she had chronic EBV. She said it took them a long time to figure that out.
Posted 11/21/2010 4:34 PM (GMT 0)
either way...what is the treatment for EBV
Posted 11/21/2010 6:23 PM (GMT 0)
As far as I know -- and this is if it means the same as Mono, there is no real treatment. I don't know anything about anti-virals. I had mono as a teen and the treatment is plenty of rest, eating right and well, pretty much just taking care of yourself. ANd it can take a long time to recover -- it varies greatly w/ people.

You do have to watch your spleen, as it can become swollen, and the Dr told me I could swim, but no diving.

The person I probably got it from had to be hospialized and missed several weeks of school. I never even had a fever, but swollen nodes and was so tired I could hardly function. Every day, after school, I climbed the stairs, hit the bed, and slept til dinnertime. Sometimes could hardly keep my eyes open thru dinner. Managed school OK, was just very sleepy and tired. Took weeks to feel better, as I recall, but it takes months for some people.

So that is my guess for re-curring chronic EBV. I'm thinking that as I recover from Lyme, I should recover from the EBV. Hopefully same for the other viruses.
Posted 11/21/2010 6:55 PM (GMT 0)
I have high ebv titers too...I am no Dr, I don't even play one on TV but I have always wondered when they say to me 'Oh, that shows you have had a past infection' which I get but....if the normal range is say, 0-100 and mine is 500...what exactly does that mean? I had a REALLY BAD past exposure? I have to think there is some significance to these high numbers...
Posted 11/21/2010 9:35 PM (GMT 0)
Your doctor looks at your IGG and IGM antibody results. That is how he/she knows if it is a past or present infection. Your IGM results mean a present infection and IGG means a past infection. I was told by my doctor that most people recover from EBV but some of us don't. From what I've read, there is nothing to take to get rid of it. Just like posted above...resting and letting your body heal is all you can do.

Here is a site that explains IGG and IGM antibodies:

www.differencebetween.net/science/health/difference-between-igm-and-igg/
Posted 11/21/2010 10:21 PM (GMT 0)
CajunGrl, before I go read your link, I want to ask about this: Then why does late stage Lyme show positive on the IgG? Dr. B says that it typically takes about 2 months (I believe) for IgM to become IgG (w/ Lyme). Yet the infection is still active.

If this is explained in your link, just disregard me.
Posted 11/21/2010 10:28 PM (GMT 0)
Lyme,

I think because the bacteria becomes active again is why it shows up positive on IGG. If I'm not mistaken it also shows as a past infection on IGM as well when it is late stage Lyme.

I think I'm understanding you right. My mind is in a very bad fog today.
Posted 11/21/2010 11:05 PM (GMT 0)
Thanks for the link to a great site, Cajungrl!!
Posted 11/21/2010 11:19 PM (GMT 0)
There are effective treatments for ebv and some of the accompanying virus's. Most knowledgable doctors will prescribe varying antivirals. Typically valtrex (commonly known as a herpes treatment) and acyclivar (don't check my spelling on that) are now used and often with good results.
Posted 11/21/2010 11:47 PM (GMT 0)
OneWearyChic,

EBV is not a herpes virus. It is more along the lines of Mono. Is this a treatment that works now for EBV?
Posted 11/21/2010 11:58 PM (GMT 0)
I was on Valtrex for high IgG titers of HHV-6, EBV, and mycoplasma pneumonae. Did it work? Hard to say. My titers weren't much different after 6mo on the drug (1g BID) so...my Dr said it could take a long time AND may never completely go away...she did not believe I had Lyme. I just went off of it recently as I feel like the doxy is quite enough right now. Plus, I believe Valtrex can be a bit much for your liver long term AND it does cause photosensitivity in some people (which no one warned me of...)
Posted 11/22/2010 12:01 AM (GMT 0)
CajunGrl,

I didn't say ebv is a herpes virus, but that it is often treated with valtrex, which is often mostly known as a treatment for herpes. It is one of those drugs designed for one thing, but often effectively used for others. (like xanax is an anti anxiety medication, but some doctors will use it to treat POTS, a form of dyautonomia. ) Many doctors will refer to longstanding ebv as chronic mono. Antiviral treatments have been used for several years now. Not everyone does well on them or on valtrex, but may on acyclivar, but some do with tremendous results.

Posted 11/22/2010 12:06 AM (GMT 0)
raw runner,

I think you are right to go off the valtrex while on antibiotics. I think that would be too much on your liver. Valtrex can be effective for some and not for others. Typically 3,000 is what is used for ebv and treatment can be for years sometimes. I have seen people on double the typical dose and do well and those on a lower dose like your's and suffer terribly. If one goes the valtrex route they should certainly drink plenty of water to flush their liver and take a liver support such as milk thistle. Oddly, most doctors who prescribe valtrex do not always relate that information.
Posted 11/22/2010 12:12 AM (GMT 0)
OneWearyChic,

I was told by two LLMD's and my primary doctor that Valtrex would not help EBV. I'm just wondering why I wasn't treated since my titers were high? Most doctors, as you can see from posts above, do not give medication to treat EBV. I wonder why?

Posted 11/22/2010 12:19 AM (GMT 0)
Okay, it seems I don't know what I'm talking about because EBV IS a herpes virus!! Wow...okay, now I am wondering MORE why I wasn't treated!! This also may explain why I have RA now. I am not feeling good at all today so excuse my ignorance.
Posted 11/22/2010 12:27 AM (GMT 0)
CajunGrl

Honestly, I think it is because most doctors don't know (and many are too lazy to learn anything new). You should also ask to be tested for Fifths Disease/human parvovirus it has many of the same symptoms as RA. I would not be surprised if you do not have RA, but have Fifths Disease (causing the arthritic type symptoms) accompanying your ebv. Antiviral treatment may make a world of difference for you!

Posted 11/22/2010 12:32 AM (GMT 0)
OneWearyChic,

Thanks for the info. I am really angry about this. I could have been treated this entire time. Well, I guess my liver would have to be monitored first because of my elevated enzymes, but to be told that there was NO treatment really makes me mad. I will definitely have them check for Fifth Disease. You know....I looked that up about a year ago because I had some of the symptoms.
Posted 11/22/2010 2:23 AM (GMT 0)
Fifth Disease is the parvovirus B19 that showed positive in my lab report. It's another one of those viruses that can become reactivated w/ immune incompetence. I do not have particular symptoms for this, tho. I tested positive for every virus the Dr ordered. So I would not doubt that most of us have ALL kinds of viruses that we haven't even been tested for.

I've told this before: My LLMD specializes in HIV, AIDS, MS, CFS, and Lyme. He has done a research paper I found on line about HHV6. It is most certainly connected to MS and CSF. From what I could understand (true 'medical paper', hard for layman to understand), he's trying to find the connection between all of these. There's still too many questions.

I'll try to link it if anyone is interested.
Posted 11/22/2010 1:12 PM (GMT 0)
Yes, my Dr at the time, though NOT a LLMD or even supportive of the possibility of Lyme, luckily did some reading somewhere along the line and learned that antivirals work in people with *CFS* who have high IgG titers for viruses. I will say that initially when I took it I did feel better. However, I believe that since the LYME was not being treated the best I could have hoped for was the temporary reprieve that I got...I have to think that at some point I will need to readdress the viral load, but for now it seems the Lyme outweighs the viruses. Man, this is a long term process...
Posted 11/24/2010 6:54 PM (GMT 0)
Cajun girl
thanks good info!
i would still like to know if 600 IgG is high for even post ebv.

Lyme and its little counterparts are hard to adequtely diagnose with precision w/o em's. Ever wonder if ebv count could also be a viral count of another virus aside from ebv such as lyme or babesia ? It could be a red flag along with the other things they look for now, such as intolerance to alcohol, jumping pains, tremors stiff painful neck etc. etc. Just a thought if anybody can tell me bout an IgG ebv of 600 as to whether its high or not (sure looked it when 16 or 18 was normal) Id be appreciative. thanks.
Posted 11/24/2010 9:59 PM (GMT 0)
My IgG is 495...
Posted 11/25/2010 1:23 AM (GMT 0)
Hi raw runner

do u remrmber when your ebv count was taken?

did your dr. explain yours to you? i.e. did he or she say if it was a high  and is so why? thanks

 

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