posted
I am on the fence about what is causing my illness. I REALLY believe that my symptoms are VERY suggestive of Lyme. However I've been reading a lot on EBV. I always thought EBV only caused fatigue, sore throat, fever, swollen lymph nodes, etc... But I've read recently that it can cause neruo symptoms as well?
I've been tested for EBV and had high titers. Can EBV relapse and remitt or be chronic? I never was sick with MONO (although I remember being very sick in college with same symptoms of MONO) But it was never dx'd as MONO.
I just feel most of my symptoms are neuro in nature... and really the only EBV symptom I could have now is the fatigue and painful lymph nodes.
Does anyone know more about this and if EBV can cause similar symptoms to lyme?
posted
EBV can cause pretty much similar symptoms to lyme, though fatigue is the most prominent one. EBV and similar herpetic viruses like CMV and HHV-6 never completely leave your body, they only go dormant.
For most people, they never give trouble again, but it seems that the complex immune changes caused by tick borne infection complex can allow it to reactivate. It may also be related to WHEN you got infected with lyme ,and when you had mono. For me, the start of my battle with lyme was a mono infection I never got over (positive by mono-spot and EBV titers, so I did actually have mono). Perhaps I had lyme before, but my immune system was able to keep it under control until the mono arose, or perhaps I got infected close to the time I got mono as well and it simply covered up the symptoms.
If you had the symptoms of mono in college, you probably had mono.Something like 90% of the population had mono at one time or another, and thus will always test positive on EBV titers. Sometimes there's an "extreme" level of titers in the event of a relapse, and sometimes there's not. Relapse itself is very possible if your immune system is stressed.
I can't say that EBV is causing your neuro problems for sure, but considering the fatigue, it is likely at least a part of your disease complex and worth treating. I would suggest getting titers for CMV and HHV-6 first of all. They're sort of EBV's nastier cousins, especially HHV-6 and can cause the exact same symptoms (with a few variations of their own).
There are anti-herpetic viral medicines out there, and they'd probably be worth trying. Acyclovir is cheap, but the least effective. Valacyclovir (otherwise known as Valtrex) is in the $300-400 a month range if you don't have insurance, Famcyclovir is another option but I'm unsure of the cost (Famvir), and Valgancyclovir (Valcyte, the "big gun" and possibly the only one that really hits HHV-6) costs $4000-6000 without insurance.
I really hope you have insurance with a no-cap prescription drug plan. If you do, its definitely worth it to at least try Valtrex (especially if you don't have any HHV-6) titers to see if there's a change.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
more opinions? I wonder the same thing myself. It was once thought my CFS was HHV6, but through Igenex I tested positive for LYme.
Posts: 1954 | From Illinois | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If you do a search on viruses using my member number you will come up with a bunch of info on EBV, enterovirus, Cpn, etc.
You are wise to consider these as a possible causes of your problems.
For more info see: www.hhv-6foundation.org You will need to sign in to read the patient posts. I have posted a lot there, including about EBV in the "testing for HHV-6 section." I am Timaca there too. I never had mono. I likely had chronic, active EBV infection. Also HHV-6 infection.
Best, Timaca ps...I am a LOT better after treating HHV-6, EBV and enterovirus.
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
I agree with Blackstone. My problems also started after confirmed mono at age 36. I believe lyme was flying under the radar at the time and then exploded when mono opened the window so-to-speak...
Also I'm intrigued by gut infections now having recently tested positive for H Pylori. We beat the notion of parasites to death on this site but they're not the only players...H Pylori testing may be worth a shot too. HP is still not well understood in terms of what it does to body wide systems...
A few things I've recently uncovered in my reading:
HP may affect thyroid status. HP probably lowers IGF-1 output... HP probably reduces ferritin level... HP may affect adrenal status, particularly relating to cortisol production...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Lyme can cause the viruses that may have been dormant to come back with a vengence.
Or, if your viruses were already high, you immune system trying to fight those off, ran out of steam which then allowed for lyme/coinfections to rear their ugly heads.
For me, right now, my LLMD thinks viruses are going to be the hardest thing for us to control, as I am making great progress with the lyme/babs symptoms.
I am on Valtrex and will switch to Famvir as soon as I go get the script filled.
My C4a results were high at 8,000 which indicates that I still have infection, but that my immune system is working to kill the bugs.
Posts: 103 | From Northern VA | Registered: Apr 2009
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posted
I have all the above plus c pnuemonia, myco, and Qfever. I have not responded to aggresive treatment for Lyme, but my LLMD has not really addressed any of these. (I've asked about it).
Fatigue and neuro are my biggest problems.
Posts: 847 | From upstateNY | Registered: Dec 2007
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