posted
And did you have it before being diagnosed with Lyme...or after?
I've known all my life I carry the EBV virus (I had mono when I was 12)
My EBV is often active, or chronic mono. I do wonder if my extreme fatigue is more from that...or from Lyme....or did the Lyme cause the EBV to activate again?
I have felt the worst this year each time I have found out I have ACTIVE mono. I went to my GP in January (before I knew I had Lyme) and he did find active mono. Back then I didn't know I had Lyme so I just rested a lot for about 5-6 weeks.
I went in at week 5, was tested and I no longer had an active infection.
I am now going on my 3rd time of an active mono case this year (and each time it was followed by MAJOR periods of stress...such as the death of my father). I'm just trying to understand if my problems are really more related to EBV which becomes active with stress...or my Lyme.
Fatigue is my major symptom. I have some, but not much, joint pain, some fogginess (could be dur to hormones if you ask me), occassional muscle twitches and lots of hair loss.
Anyway, just curious to hear from those of you who have active EBV or what they call chronic mono.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
No good way to diagnose chronic EBV really. It's a crap shoot as with TBIs. We can all say we think we have this as 90%+ of the population has EBV-IgG titers.lol. I'm guessing hardly anyone here has elevated EBV - IgM Ab levels (the real indicator of an active viral infection).
I believe there may be an EBV-PCR test though. No ID doc has mentioned this, but I've seen it in a few medical books.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I know it is rare to have it elevated but my tests have come back that way 3 times. Each time it takes me about 4-5 weeks to get better.
Then the levels go back down...so I definitely have had the high IgM levels.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
If your issues originally manifested as mono via monospot, then EBV could play a role in your current issues IMO. This is what happened to me. EBV after an acute phase can go chronic in certain individuals.
With lyme present as well, who knows what EBV is doing. I actually had high EBV IGM a full year after my initial mono episode.
I'd say forget about testing and run the anti-virals for a good 6 months at least as an experiment.
Plus if you're older (I had mono at 36) it can be much tougher to bounce back than the normal age of infection which is more likely teens and younger...
Also eradicate the HP if you haven't already. You don't want that in there if you have lyme because both can disrupt the endocrine system (purportedly)...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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WildCondor
Unregistered
posted
Have you ever taken antivirals to lessen the load on your system? Most of the human population has EBV, its very common. You probably keep getting reactivation of it because your system is busy fighting off all these infections at once. You might need antibiotics and antivirals at the same time.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Yes, I likely had chronic, active EBV infection. It seems I also had chronic HHV-6 infection, as well as VZV infection. Those appeared to be controlled after valcyte and now I'm on acyclovir.
I am currently battling enterovirus and chlamydia pneumonia.
Here's some info on EBV:
Here is a link to an article about chronic EBV infection:
# Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
You can also view two videos about EBV infection on the HHV-6 website: There is a link on the home page: www.hhv-6foundation.org
"View videos from the Symposium on Viruses in CFS"
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Well you sound JUST like me. How do I know if its Lyme or EBV since I know I have active EBV? Mine too brought on my major tress. My ID Dr said the Lyme re-triggered the EBV since I had MONO as a kid.
So I am not on antibiotics now, after about 18 months. I am on L-Carnitine, L-Lysine and Acyclovir. My Dr says exercise is KEY. He wants me to walk.
I was seeing him every three weeks but now I am every 6-8 weeks so I am getting better.
Fatigue just sucks. If I have 5 minutes to lie down, I'll be asleep in a minute! He thinks I may have moderate depression too and I kinda agree, given my life stressors.
Honestly, I am working hard on a regular sleep schedule, taking my meds and going to the gym. Its so hard to be myself motivator!
posted
i do; fatigue stinks royally; but i listen to my body and lay down to sleep as it needs it and my wierd late night hours i hate also.
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posted
I am curious as to the anti viral meds or homeopathic meds that you guys take for viruses.
I take Famvir and some homeopathic "drops". Do they really work?
Posts: 103 | From Northern VA | Registered: Apr 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It is difficult to know if lyme or EBV or other pathogens are causing the symptoms. The symptoms can be the same with a viral or bacterial pathogen. The best thing to do is run tests and treat the most obvious.
I'm not even running lyme tests anymore. Cpn (chlamydia pneumonia) is a problem for me and that is treated with antibiotics, so I feel if lyme is a problem, then it is getting hit too.
My lyme tests were suspiciously positive at times, equivocal at other times (some of you would have said definitely positive)...but my other viral and bacterial pathogens were flaming positive, some via antibody tests and some confirmed by tissue testing. So, that is what I'm treating. And I am seeing improvements. In fact the last 3 months have been the best I've had health wise in the last 6 years of my illness. I'm not well, but I have definite hopes that we are headed in the right direction.
I just typed up my lab tests that I will get drawn in the next week or so. Here they are for those who are intersted: Best, Timaca
Please order the following tests from Focus Diagnostics Lab.
2420 EBV Panel
40530 HHV-6 Antibody IgG
40525 HSV 1/2 IgG Elisa
23120 Chlamydophila pneumoniae Antibodies
41025 VZV total and IgM antibody panel
41381 Parvovirus B19 IgG
24600 CMV IgG antibody
Please order the following tests from ARUP Lab.
0060053 Echovirus Antibodies
0060055 Coxsackie B Virus Antibodies
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Cindy Ss
Unregistered
posted
I too have positive/reactive EBV had it in my 20's now (50) with newly dx lyme.
I'm in treatment but it is hard to tell if or when abx is helping because of the EBV symptoms.
I agree is it the Lyme making you feel bad (fatigue)or EBV. (or both)
I thought EBV just required resting and not medication.
With ABX and/or rest fatigue is somewhat better Just taking abx and lots of supplements. Looking into more to control Anxiety/tremors...
Possibly prescriptoin meds (mine is bad at times) seems worse with higher dose of abx always slink back to lower dose due to the anxiety/panic...
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Cindy~ I'd run the above tests at the labs mentioned, then treat what is most obvious. EBV and HHV-6 can be treated. I friend of mine had lots of anxiety. That is mostly gone now after treating those two pathogens.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Some have tried Lauricidan and Lomatium as well as other natural treatments. I haven't tried many but will be running Lomatium soon as an experiment.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
My EBV lab readings were off the scale and I was getting sores in my mouth frequently. I'm going to what is supposed to be a "cutting edge" clinic in Santa Rosa and the doc is treating me for EBV as well as lyme.
I'm being given Transfer Factor LymPlus by Researched Nutritionals ($83 for a bottle of 60 - must be refrigerated and can only be gotten by a health care pro). Although it says LymPlus, it is supposed to be a treatment and curative for EBV which also has positive factors for lyme. My dose is one a day for a year-and-a-half.
I don't know whether I will have to be retested in 1.5 years and possibly need to take it longer or not but the doc said a year-and-a-half. I have an appointment on Tuesday and will ask. He did say I will acquire immunity. I haven't had sores in the mouth since I began taking the LymPlus.
Sheryl
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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posted
I really believe EBV and all the other viruses I have are a major part of my fatigue and illness.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I'm surprised how many of you have the active EBV.
I'm a little disappointed that my doctor has not prescribed any antivirals. I used to get cold sores years ago and my GP gave me a pre scription for Valtex.
I keep it on hand and anytime I start to get a cold sore I take that for 1-3 days and the cold sore NEVER develops. So I know it works for that.
I started taking what I have in stock today...maybe it will help with my active mono.
I always thought rest was all you could do too...but I don't have 4 weeks to rest every time this happens.
I'm now beginning to wonder if the Lyme activated my EBV as many of you said.
What are these:
Chlamydophila pneumoniae (that sounds awful..is it related to genital chlamidia?)
VZV
Parvovirus (isn't this what dogs get?)
CMV
Also is HHV6 the herpes that causes cold sores?
I don't think my doctor tested me for all of those.
Sigh...the more I learn the less I want to know. This sucks...I just want to be well
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
I take Valtrex for EBV, CMV, HHV1-6, and other virals. Also, I Rife or use Bionic for each. They replicate and give me lots of neurological symptoms and are hard to get under control.
Posts: 212 | From Arizona | Registered: Jul 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
VZV is Varicella Zoster Virus--the chicken pox/shingles virus
Parvovirus can also be found in humans
CMV is another herpes virus...cytomegalovirus
HSV1 is what causes cold sores. That is Herpes Simplex 1. HHV-6 is Human herpes virus 6.
It is overwhelming...but you need to check it out.
I would probably talk with your doctor about taking an antiviral instead of just taking what you have on hand. You will need to take the antiviral for several months to beat back a chronic, active infection. And I would identify what you are sick with before getting any treatment.
You don't have many lyme bands...one really (band 23) so I would question whether or not you have lyme at all. You may just be sick with chronic active mono (or other viruses)
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Timaca, Thank you for the explanations. I am learning so much!
I will ask my doc to test for all of these as well as get on a long term anti-viral treatment.
I am so happy to hear someone say I could possibly not have Lyme. I've thought that all along...I am just not as sick as most people who have Lyme. Do false positives occur very often?
Thanks again for responding.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
I had very elevated EBV levels about 2 years ago -- Valtrex helped the fatigue tremendously, and I haven't been re-tested, but suspect they went way down. I had mono as a teenager... LLNP suspected Lyme reactivated the EBV.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
I can tell you that when I was finally diagnosed in Jan 07 that a neuro told me I had ms. I remember that 7 years earlier that the same doctor told me that my positive lyme test did not mean anything cause my elsia was pos but my wb was negative and did not have lyme..well in jan of 07 I took it upon my self to get tested by a llmd and tested postive under cdc standards for lyme, ebv, 2forms of elchriosis and also rocky mt. spted fever. Needless to say been getting treated since 07 with ups and downs, but I improved the brain fog from the lyme and fatique with antibiotics, and gain severe pain in joints and muscles since start of treatment. I have hope that the next iv treatment starting this month will help with the pain. Hang in there I went undiagnosed for years and did not accept the ms diagnos and any treatment for ms....I can say that the neuro did say she new nothing about lyme and to see a infectious disease doctor...its ashame that I have cns lyme disease but a neurologists know nothing about it......bless you and get losts of rest, also i get b12 shots that have helped with my fatique.
Posts: 15 | From pennsylvania | Registered: Mar 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
My "chronic" EBV results are always way high. It was also reactivated WHILE I was on valtrex ("EBV Early EA" test). Switched to famvir and numbers are still up in the sky.
Blech.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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