I came off of abx in August, after on and off treatment for 14 months. Felt pretty well for almost a month before getting sick with what I thought was a stomach virus. It kept lingering, never going away completely. After numerous tests (CT, blood tests, upper and lower GI scope), I was diagnosed with a positive EBV test. Tested negative for mono, but liver enzymes were elevated and liver and spleen enlarged. My question....is anyone aware of some connection between the EB virus and Lyme? I know my immune system is still not what it was prior to getting infected, and am wondering if somehow this illness is related to the lyme. I'd appreciate any comments/experiences any of you could offer. Thanks.
Lunch
Posts: 17 | From PA | Registered: Jun 2005
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posted
I was first diagnosed with EBV. My test showed very high IGG vaules wich led the ducks to think I was recovering from a case of Mono. 1 year latter posative for all co-infections and lyme. My EBV Igg is still high but I am still fighting off the other bugs. My LLMD is not so concerned about the EBV in my case due that my organ systems are not like what you are going through.
Posts: 582 | From milwaukee wi | Registered: May 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I believe that EBV is a common infection. Most people are infected at some time in their lives so it would not be unusual to have a positive IgG.
According to my LLMD and many others, people with Lyme usually have a suppressed immune system which makes us more likely to pick up many other infections. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Yep, EBV and Parvovirus and micoplasma pneumonia are common this soup of infection. The doctors don't spend too much time on the viruses. It just adds to the discomfort, though.
Now you know why you've been so tired?
Posts: 2903 | From AZ | Registered: Feb 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I agree with everyone so far - EBV, HHV6, CMV, Mycloplasma, etc. are among many latent and dormant pathogens that may activate in Lyme patients because our immune systems are suppressed.
I had elevated EBV and other titers decades ago with Chronic Fatigue Syndrome, recovered, now it's active again with Lyme.
Some Lyme doctors prescribe Valtrex to Lyme patients for any herpes-like viruses. I'm using natural methods such as olive leaf extract and Monolaurin to try to get the EBV under control. My LLMD feels its important to try to treat the viruses in some way to take some of the load off the immune system.
Were you ever treated for any of the other tick-borne diseases? They can also account for elevated liver enzymes, spleen issues, etc.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Yes I was tested for other infections about 9 months ago and tested negative. I guess I just have to wait it out, and try to boost my immune system. What can I take for that? I have read cat's claw, but am not familar with it. Does it work?
Lunch
Posts: 17 | From PA | Registered: Jun 2005
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Yes I was tested for other infections about 9 months ago and tested negative. I guess I just have to wait it out, and try to boost my immune system. What can I take for that? I have read cat's claw, but am not familar with it. Does it work?
Lunch
Posts: 17 | From PA | Registered: Jun 2005
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
almost everybody in the country will test positive for Epstein barr, herpes simples and many other viruses.
most of these were originally obtained in childhood and anitbodies are still present in the body. epstein barr and most viruses will come forth from there secret hidden location when the body is under stress or immune deficient. ie. cold sores, herpes simplex
most viruses hide in the nerve ending in our body and stay inert until something activates them to full sattus.
most all lyme patients will show eb virus positive for there whole life.
the diagnosis of any viral disease must also be from symptoms and not tests. tests just tell you the antibodies are in your system, nothing else.
eb virus can be very dangerous as an adult and should be taken very seriously. eb can convert to lymphomas such as hogkin's lymphoma. mono in adults can be very debilitating and can lead to other issues.
time for dinner lunch
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
quote:Originally posted by LunchIsland: Jill,
Yes I was tested for other infections about 9 months ago and tested negative. I guess I just have to wait it out, and try to boost my immune system. What can I take for that? I have read cat's claw, but am not familar with it. Does it work?
Lunch
Hi,
I haven't taken cat's claw, but many people do as an anti-Lyme herb.
I know of some people who take medicinal mushrooms supplements to boost the immune system. I am planning to try that at some point to try to boost my CD57 Natural Killer Cells.
You might want to do a search using the Search tool for any posts about immune boosting - there have been threads on here about that.
Back when I had chronic fatigue syndrome, I used a lot of different immune boosting herbs such as echinacea, goldenseal, etc. plus anti-viral herbs from an acupuncturist. But I'm concerned about doing that with Lyme - I've heard mixed things about using echinacea for Lyme.
My Bartonella didn't test positive until I started Bartonella treatment, but we suspected it because of symptoms. You might want to ask your Lyme doctor if any of your symptoms indicate a particular coinfection.
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Jill E.: I agree with everyone so far - EBV, HHV6, CMV, Mycloplasma, etc. are among many latent and dormant pathogens that may activate in Lyme patients because our immune systems are suppressed.
I had elevated EBV and other titers decades ago with Chronic Fatigue Syndrome, recovered, now it's active again with Lyme.
My LLMD feels its important to try to treat the viruses in some way to take some of the load off the immune system.
Were you ever treated for any of the other tick-borne diseases? They can also account for elevated liver enzymes, spleen issues, etc.
Jill
I was tested a couple of months ago for viruses for the first time. Apparently EBV and Coxsackie A were both recent reactivations. (I also have low level persistant HepC)
I was just about to start antivirals and my liver functions went too high. I was treating Babs at the time.
I was wondering if the viruses could be at least partially responsible for the spike in LFTs?
Sorry for the hi-jack, Lunch, but you reminded me and I'd been thinking about this too. Thanks for posting this topic.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
lunch, please edit your 1st post that is NOT broken up for easy reading.
Click on PENCIL and then break up each sentence as a paragraph like I'm doing here.
Leave one blank line between each paragraph so we are able to read/comprehend what you have typed.
click on EDIT POST button to send....thanks!
Please do this on ALL posts/replies.
I have this; want to read all posts; then I will respond. Bettyg
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posted
I'm not sure there's a connection so much as there is the fact that if you test for it, it will show up. I had real (monospot positive) mono at the beginning of my whole "sickness" thing. I never really got better from it, so I was diagnosed with Chronic Fatigue for several years until I was diagnosed with Lyme.
I recently ran viral titers and some EBVs come back positive and others don't. Most likely, they will always be positive, as others have mentioned. Remember that there are a lot of viruses and even some bacteria (tuberculosis for example) that you will remain positive on the immunoreactive tests for the rest of your life. This however, does not mean you have an active infection or anything of the sort.
I am a bit curious about Valtrex, however. Has anyone noticed a great improvement while they were on it?
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
I found this tiny bit of info on the Igenex site, don't know if it will help....
A positive IgG result with clinical history may be indicative of Lyme disease. Patients with other spirochetal disease and/or who test positive for rheumatoid factor or Epstein Barr virus may have cross-reacting antibodies. A positive response in this, as in any antibody assay, indicates sensitization, not necessarily active disease.
Posts: 413 | From nj | Registered: Nov 2005
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posted
My opinion is that EB is all over the place. Low immune systems can't take care of it the way a strong one can. Therefore, when our bodies are not strong, we let things like EB in. I had it for a long time when I was sick.
Posts: 21 | From San Francisco, CA | Registered: Jan 2007
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bettyg
Unregistered
posted
feb. 1970 when i was diagnosed with mononucleosis, it actually was EBV; but was also the BEGINNING OF MY CHRONIC LYME DISEASE.
labs showed 3 types of EBV, active HHV 6, simplex herpes, etc.
quote:Originally posted by bettyg: feb. 1970 when i was diagnosed with mononucleosis, it actually was EBV; but was also the BEGINNING OF MY CHRONIC LYME DISEASE.
My downward spiral began around 1968 with mono....which I now believe was the Lyme rearing its ugly head from childhood.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Count me in, too - my Lyme spiral started with "mono" in 1982. Doc finally called it "chronic recurrent mono" - after I kept relapsing over and over.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Betty g - for some of us it is harder to read when all broken up. It actually makes my eyes "bug out" and causes too much jumping around for me to follow; much easier to read a steady paragraph. Guess we are all different; just noticed you are asking lots of people to edit thier posts and I'm not sure that is making it easier for everyone. I have a really hard time followinig too many spaced sentences. They all look alike.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I tried Famvir (An antiviral relation of Valtrex) for a few weeks, which didn't seem to really do anything. It may have made me a little more tired. I was a bit concerned that a few weeks wouldn't be enough time in treatment, but one of my LLMDs thought that something should have shown improvement by then if there was active infection.
Since most people have mono at some time in their life (I never had elevated liver function studies, or englarged spleen), its completely possible that the EBV is just a remnant now and not an active infection.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
^ In the recent news about the Stanford infectious disease doctor who is researching treating chronic fatigue cases that are positive for EBV and HHV-6, he treats them for 6 months with valganciclovir, and the patients tended to show improvement after 4 weeks. One guy was cited as taking 6 weeks to show any improvement.
Posts: 98 | From San Francisco | Registered: Oct 2006
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