posted
i read that about 95% percent of the adult population has Epstein Barr - regardless of lyme infection or not
... EBV is what 'causes CFS'
Green
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I never had a lab test, so I can't say anything definitively. It is my understanding, however, that there are other possible causes or multiple causative factors for CFS.
If you have EBV, it would be well worth clearing it. In lyme disease one infection might be prominent for awhile, then another might appear. It is not straightforward, really, and we have to remain flexible to deal with what presents itself at different times. It is this way we move up the ladder towards health, at least that has been my experience.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Thanks for all your replies. I went to the neuro and picked up the results for Monday when I finally get to see the LLMD.
AFter some research I did on my own...
Many Lyme patients have been misdiagnosed with EBV and only treated for the EBV. I think I was luckty enough to have the positive Lyme test first.
Whatever happens I am hoping that the LLMD can make some sense of it all and get me in the right direction. Still taking doxy (i'm on week 8)and hoping to have at least killed off some of this rotten bacteria.
Posts: 193 | From New Jersey | Registered: Oct 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The more I learn about this, the more I don't know...
It's all very complicated to untangle the causes of our illness.
I had CFS when I was 28 (20 years ago). I think I was tested for EBV. It was all very new at the time. They used to call it Yuppie Flu back then. I wasn't a Yuppie, though.
I think my tests were negative. I was tested again a couple of years ago for EBV & it was slightly elevated. My doctor said it's pretty common these days to have a slightly elevated EBV level...
Fatigue was a big factor in my illness back then.
Now, I have a clinical Lyme diagnosis. It's hard to say if I didn't have Lyme back then. From what I have heard, the co-infection tests are not accurate, either. My doctor feels that I don't have them.
It's really hard to pinpoint how all of these things effect us.
Whether it's EBV, Lyme, co-infections, the various herpes viruses, mycoplasmas, adrenal stress, hormone imbalance, EMF exposure, toxins in the environment, mercury fillings, allergies to food or pollen, mold, yeast, our own genetics... it's just very hard to get a grip on it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I agree with you wholeheartedly sparkle. It is very difficult to get a grip on this.
I find myself spiraling further into despair the more I find out that is wrong with me.
It is just so darn sad that so many people have to deal with all of this.
I lost my MIL a few years back to ALS. Now I question whether or not she may have had Lyme. She lived in an area where deer freely roamed the front and back yard.
I still don't let the kids in the yard when we visit my FIL. Its too risky.
My comfort now is knowing that I will see an LLMD. At least I know that she will listen and treat accordingly.
The neuro that sent me for the bloodtests told me she didn't know how to treat from here. Also suggested an infectious disease dr. I am opting not to take that route.
Posts: 193 | From New Jersey | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I'm glad to hear that you have a LLMD appointment for next Monday. That will clear up many questions.
You may have seen these links before but, if not, I hope they help for your prep.
You may be able to get the book if you order it today.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
lymphobic~
What are your EBV antibody titers?
You may also want to get tested for HHV-6 (use Focus Diagnostics Lab for that). See: www.hhv-6foundation.org. Sometimes HHV-6 has reactivated when EBV is active.
I do see an ID doctor and he is treating me for several viruses and Chlamydia Pneumonia (Cpn). You might as well get tested for that too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I don't quite understand all of this but here goes:
EBV Ab VCA, IgM 153 High Equivocal 100-120
EBV Early Antigen Ab, IgG 192 High Equivocal 100-120
EBV Ab VCA, IgG 2624 High Equivocal 100-120
EBV Nuclear Antigen Ab, IgG 548 High Eqivocal 100-120
Any takers???
The LLMD I am seeing on Monday is an Internal Medicine I believe.
Posts: 193 | From New Jersey | Registered: Oct 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think it just takes time to unravel it. You have to pace yourself & try not to get too overwhelmed.
I'm still going through the process. I'm not sure it is ever over if you've been infected a long time. I've just learned to accept it as best as possible.
I have faith that I'm going to get better but it's not easy. There are people here on this message board who understand.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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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
EBV is not necessarily the cause of CFS...that's just a theory. I saw an infectious disease specialist a couple of months ago and he downplayed EBV when I asked him about it.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
The problem is that there are too many theories and not enough understanding. That is just as bad as the terrible symptoms that we have to deal wirh on a daily basis. I just came back from seeing a CFS specialist that deals with viral issues.
I still dont know what I really have. I most likely have CFS, Babesia and possibly Lyme and maybe more. Who knows this is all so frustrating and difficult to deal/live with day in and day out.
Posts: 103 | From New Jersey | Registered: Jun 2008
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EBV IGG VCA by IFA 1:2560 (equivocal >1:10) EBV Early AG IGG, IFA 1:160 (equivocal >1:10)
I also have pretty high HHV6 levels:
HERPESVIRUS 6 IGG 1:320 (equivocal >1:20)
I see an LLMD as well as a CFS/Fibro Specialist. The CFS/Fibro Dr. has me on 1 gram of Valtrex 3x daily for the viruses.
He also has me taking Epicor to boost my immune system (NK cell activity) and I also take Maitake mushroom capsules for the same reason.
As I've progressed with both the Lyme and viral treatmemnts, my fatigue has been reduced DRAMATICALLY.
In addition, I used to be VERY thirsty all the time (completely unquenchable), and that is pretty much gone as well.
I have had my viral levels rechecked (after about 5 months of viral treatment), and I'll find the results at my next visit in Dec.
If they've improved, I'll be sure to let you know so you can consider trying viral treatments as well (although any improvement could realistically be for multiple reasons, not just viral treatment).
God Bless!
Posts: 453 | From TX | Registered: Aug 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
VB~ It will be interesting to see if valtrex has helped your HHV-6 levels. Keep us posted.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I tested positive for EBV when I was first tested for Lyme. Am currently being treated with Valtrex, in the middle of the third month.
Posts: 449 | From Vermont | Registered: Nov 2004
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posted
From what I've read and from the other Lyme patients I know, elevated EBV titers are very common with Lyme.
We know that most of the population has EBV titers, but have any studies been done comparing the titer leves of healthy people to those diagnosed with CFS, etc? My understanding is that healthy people will have a relatively low IgG titer, so when you see titers in the thousands, there is a strong probability of a chronic EBV infection.
VB - Please do update us when you get your viral test results. Since Valtrex supposedly works for EBV and not HHV-6, it will be very interesting if both viral levels have decreased.
Posts: 27 | From USA | Registered: Aug 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Epstein Barr is closely related to mercury toxicity. The viruses also thrive under EMF exposure.
I had extremely high levels of EBV when I first came down with Lyme. But I went on a concentrated dental cleanup and some abx along with heavy metal detox and it cleared up very quickly.
I am testing it now with the EBV nosode and the Bionic, but neither my husband nor I are testing positive for it any longer. If we did, I would do a quick Bionic treatment. Any of these minor infections clear up so quickly with it. It is amazing.
I tested a member of my close family today and she definitely has it also. We will watch and see. She does not have Lyme, definitely not. But she did have amalgams at one time and I will test her for the metals next time. I just test with the Biotensor and that tells all.
But at least check your mercury/heavy metal toxicity levels. Most problems that with that.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
I'll make sure to keep you posted! My next apt isn't until 12/16 though, and the nurse at this Dr's office is weird about giving test results before the next visit, so I don't think I'll be able to get them earlier than that.
Posts: 453 | From TX | Registered: Aug 2008
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echostef
Unregistered
posted
Yep. My first of many misdiagnosis was EBV, after blood tests from an infectious disease duck were run.
It is my understanding that many Lymies also test + for EBV.
As I continued to get worse, I suggested maybe I had Lyme and she got completely rude with me and started her rant about how "Lyme Disease doesn't exist in Texas, your sed rate is fine...and how she was "tired of patients trying to diagnose themselves."
Nice going, duck. If it wasn't for her my TX would've started 6 months before it did, after I pretty much demanded to have a Lyme titer run by the 10th so-called specialist I was sent to.
That one told me I had anxiety disorder.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I don't think EBV is an either/or diagnosis with lyme. Just two separate issues and you most likely have both.
As stated earlier, many, many people have the EBV virus but it is dormant. When our immune system gets overwhelmed then EBV and many other dormant bugs in us come to life.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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