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False Positive Lyme test due to hidden Epstein Barr

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Posted 7/15/2015 9:10 PM (GMT 0)
Yes, you read that right.

My LLND (who could potentially profit most off of me actually having Lyme disease), looked at my Igenex Lyme results (which my NON-LL naturopath deemed to be "positive"), saw too much IND and not enough hard proof, and wanted to confirm that I actually had Lyme before starting any treatment. His method for confirming this was to test me for everything under the sun that could ALSO raise antibody flags on a lyme test.

Well I got those test results back yesterday, and epstein barr was positive. He told me that Epstein Barr can raise false positives on a Lyme test. He wants to treat the Epstein Barr first and then see how I feel, and re-test for lyme.

What do you guys think about this? Have you heard of this before? Is he behind/inexperienced in the current knowledge of Lyme, or so ridiculously far ahead of everyone else? He is highly regarded in my area as one of the top LL's (PM me for his name). From the first meeting, he has said that the "no false positives" claim that is proudly thrown around in the Lyme community is crap, and that its more like 1-2% chance of a false positive, and for reasons such as this.

I lead you to this article as well, explaining a study in which this may be the case:

http://cid.oxfordjournals.org/content/41/12/1826.full

Thanks guys!

Post Edited (seantheautomator) : 7/15/2015 4:05:52 PM (GMT-6)
Posted 7/15/2015 9:18 PM (GMT 0)
Igenex Lyme results:

IGM:

41 IND
83-93 IND

IGG:

28 +
31 +
39 IND
41 ++
Posted 7/15/2015 9:26 PM (GMT 0)
Almost all adults by age 40 have been infected with EBV. It's not uncommon. I'd want to know if the results point to a current infection or not.
Posted 7/15/2015 9:27 PM (GMT 0)
Really??? Your doc is going to say that Borrelia burgdorferi specific bands are only due to an EBV infection????

Sorry - that's just crazy.

That article was written by researchers that are connected to the IDSA, so of course they're going to say those things - it's all part of their trying to discredit Lyme patients and cover their you know whats.

Try going through this site and finding your band numbers and look up the corresponding articles showing the truth of each band as far as we know at this point in time:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt
Posted 7/15/2015 9:40 PM (GMT 0)
Traveler, you have been of great help to me in the past. Thank you, first of all.

Do you suggest I email him and ask about 28 and 31 being Lyme-specific bands? If he's an LLND, doesn't he have to know this kind of stuff? Is he trying to mislead me? What's the deal here?
Posted 7/15/2015 10:21 PM (GMT 0)
sean - are your symptoms consistent with EBV? I know some would overlap - the fatigue, the swollen lymph nodes, fever...but do you not have other symptoms that can't be explained by an EBV diagnosis?

I didn't know there was a treatment for EBV - other than treating the symptoms?
Posted 7/15/2015 10:25 PM (GMT 0)
I was diagnosed with Candida overgrowth and all of my symptoms are spot on with Candida. Even though a lot of Candida symptoms overlap with lyme, I've read entire books on Candida and entire books on Lyme, have wrapped my head around both diseases, and I can conclude that my symptoms are soooooooo Candida. Moreso than EBV symptoms as well.

Post Edited (seantheautomator) : 7/15/2015 5:38:58 PM (GMT-6)

Posted 7/15/2015 11:15 PM (GMT 0)

seantheautomator said...
Traveler, you have been of great help to me in the past. Thank you, first of all.

Do you suggest I email him and ask about 28 and 31 being Lyme-specific bands? If he's an LLND, doesn't he have to know this kind of stuff? Is he trying to mislead me? What's the deal here?

Thank you, Seantheautomator. I do appreciate your kind words.

Actually, no, they don't "have to know" about the bands and what they mean just because he's a LLND - did he have ILADS training? That's where I would start - and then I'd tell him he needs to back that up with research studies - just like I do when people start asking me about the different bands. I've been doing a lot of that these last few days! LOL!

I have no idea why anyone would say those things.

Let's look at EBV a bit deeper:

Epstein-Barr is the virus that causes mononucleosis. You might know this disease better by its nickname, "mono." It's also called the "kissing disease" because of one way you can spread it to someone else.

Even though Epstein-Barr virus (EBV) isn't a household name, you've probably been infected without knowing it. Lots of people carry the virus but don't get sick.

Symptoms

Once you're infected with EBV, symptoms can take 4 to 6 weeks to show up. When they do, they're often mild, especially in young children. Kids' symptoms may be more like those of a cold or flu. Teens often have more obvious symptoms of mono.

If you do get symptoms, most likely you'll have:

Fatigue
Fever
Lack of appetite
Rash
Sore throat
Swollen glands in the neck
Weakness and sore muscles

Although you should start feeling better in 2 to 4 weeks, the fatigue can stick around much longer. You may still feel tired a couple of months later.
(www.webmd.com/a-to-z-guides/epstein-barr-virusp)
I'd like to add canker sores to that list though.

Do these symptoms cover all of your symptoms that you experience? Or are there symptoms that are not mentioned here, but are in the Lyme symptoms?

The biggest issue with EBV for most people is spleen enlargement, so if a person doesn't have an enlarged spleen, then it usually just feels like a long standing flu and antivirals or L-lysine (what I use each time mine gets out of control) will bring EBV back under control.

But, how could you not have Lyme (Borrelia burgdorferi - the one specific strain that the CDC tests for, out of the over 100 strains that are known to cause human illness) - if you are testing positive on Borrelia burgdorferi bands???????

Please do not assume that this doctor is seeing this right - you have Lyme specific bands on your test showing positive - the ONLY way for them to get inside of your body is for you to have the infection. Just because you passed by someone that has Lyme, you don't suddenly test positive on Lyme specific bands.


If it was me, I'd be asking the doc to explain why I'm testing positive on Borrelia burgdorferi (Lyme) specific bands if I don't have Lyme - that's a warning flag to me that the doc knows less than I do. But I'm a bit ornery like that.

So you feel like your biggest issue is with Candida? Then treat the candida and see how you feel. I bet that isn't' all that's going on with test results like that. Please at least get a second opinion.
Posted 7/16/2015 1:06 AM (GMT 0)
I've had reactivated EBV for most of my life. I had mono at least a dozen times in my 20s and 30s.

When I first started seeing my LLMD, she FIRST tested me for 5-6 viruses and started treating me for high viral load (5 of the tests came back w/ high titers, reactivated EBV). After getting viral tests back, we started treating w/ antivirals. We also started antifungal treatment. She also tested me for lyme w/ ELISA, which came up negative.

Knowing to ignore the CDC two-tiered methodology, and with nearly 40 pages of surveys and questionnaires and medical history and symptom history (I've had lyme 15+ yrs), she remained suspicious of lyme from a clinical standpoint and assumed my under functioning immune system (logical, given the high viral and fungal load) was simply not producing enough antibodies to be detected by the test. She started me on Olive Leaf Extract to "provoke" a more accurate and active immune response to the lyme and once I got past one lyme lifecycle (appx 6 wk) we tested w/ IGeneX WB, which was CDC positive.

But the viral load was dominant and it took a good 2-3 months to get my viral load down before we even started treating the lyme.

My question to your ND is… why in the world would EBV (which, as the other poster suggested nearly everyone has) or a reactivated EBV preclude also having lyme, particularly w/ Bb-specific bands, as Traveler's citations prove? Why does having EBV mean you can't also have lyme? ILLOGICAL. The bands aren't really a guessing game. They aren't a smorgasbord of "take your pick and then arbitrarily decide what you will about an IND or a +, or ++." Sometimes, things are pretty straightforward.

While Traveler states she is ornery, she is also generous and has unlimited patience. If it were me, however, I'd just go straight to finding a better ND…

Regardless, you're smart to post and good luck however you resolve it and please let us know how things go.

-p

Post Edited (Pirouette) : 7/15/2015 7:09:37 PM (GMT-6)

Posted 7/16/2015 2:24 AM (GMT 0)
Is your LLND ILADs trained?

The majority of people with Lyme do test positive for Epstein Barr. It's not a coincidence.

The Epstein Barr is part of that whole complex of illnesses we tend to get.

Any LLMD or ND worth his/her salt show know that.

I would say this doctor's opinion is highly suspect.

Sorry, but that makes no sense whatsoever.

Plus, there are almost no false positives for Lyme.

Margaret
Posted 7/16/2015 3:10 AM (GMT 0)
Wouldn't a course of abx prove it right or wrong? If you start herxing like crazy..........
Posted 7/16/2015 5:08 AM (GMT 0)
Ok, so this infuriates me.

The elisa lyme test, which is the preliminary test, can have a false positive due to Epstein-Barr BUT absolutely NOT the Western Blot.

The bands are the western blot test and each band represent as a whole, an organism. There are certain bands that pertain to the flagella which can be syphillis because they are also a spirochete, BUT you must look at all the bands as a whole. EBV IS NOT A SPIROCHETE. It won't EVER produce those IgG bands.

See, this is what happens when you allow interpretation of tests so loosely. I question this doctor's integrity.

Your bands are substanial to me.

Post Edited (JoOnTheGo10) : 7/15/2015 11:22:01 PM (GMT-6)

Posted 7/16/2015 5:14 AM (GMT 0)
And just about everyone carries the EBV virus. It's questionable how to diagnosis reactivated EBV since antibodies remain from the first time your acquired mono. There's tests called the early D antigen as well as IgM and the EBV nuclear antibody, but even so doctor's disagree among themselves what truly diagnoses reactivated EBV.
Posted 7/16/2015 6:09 AM (GMT 0)
...you have Lyme ...Lyme specific bands with a plus Mark your doctor isn't bright
Posted 7/16/2015 8:30 AM (GMT 0)
The HUMAN herpes virus aka HHV6 is the one to really be concerned with; the HHV6 has now been shown to cause HIV to result in AIDS...but in people WITHOUT HIV, but positive for ANY of the intracellular organisms such as Mycoplasma, chlamydophilia, and/or spirochetes-the HHV 6 together with only one intracellular organisms actually causes a gene mutation, a 're-shuffling of genes', as described by scientists Carrigan and Knox.

The result is an irreversible damage done to the cellular processes!!!!!

Sorry for the bad news, but it's the reality!
Posted 7/17/2015 6:28 AM (GMT 0)
Okay so since I don't trust my LL doctor anymore since he clearly doesn't know how to properly interpret a Lyme test, now I'm starting to doubt anything and everything he has told me.

Here are the test results that contain the EBV among other things he propositioned. I ask you guys, would you please take a look?

https://www.dropbox.com/s/uz4tsqpz0mnj89i/Printout%20-%20Elation%20EMR-3.pdf?dl=0
Posted 7/17/2015 7:16 AM (GMT 0)
That's your name on the bottom of each page? You should remove it for privacy reasons...
Posted 7/17/2015 11:35 AM (GMT 0)
sweetpeaisme: So if you have the herpes virus ( the one that causes cold sores) you can get a false positive Lyme Elisa/Western Blot?
Posted 7/17/2015 4:29 PM (GMT 0)

seantheautomator said...

Here are the test results that contain the EBV among other things he propositioned. I ask you guys, would you please take a look?

https://www.dropbox.com/s/uz4tsqpz0mnj89i/Printout%20-%20Elation%20EMR-3.pdf?dl=0

Hey Sean! I'm hoping that you are feeling better. Love that you posted your results.

As you can see, there is a chart below your ebv titers that allows for a loose interpretation. You will notice that the reactivation* part shows IgM being either + or - . This is because there is no 100% to diagnose reactivation that is same across the board for all individuals. It is at the discretion of the doctor to interpret your results as current or past. Because your IgM is negative, it's the job of the doctor to look at your symptoms and correlate them. Personally, I believe your results show a past infection.

DO NOT be alarmed by the high flag as 99% of the population has "HIGH" titers of EBV from the past. It is absolutely normal. In fact, the healthier you are, the more antibodies you will have.

The rest of the results show that you have no current infection because you lack all IgM antibodies. You however have had, C. Pneumoniae, Paro, M. Pneumoniae, HHV 6 and HSV2.

Astonishingly enough you are CMV negative which is amazing as less than 75% of the population is CMV positive.

It's popular to get cold sores and genital herpes, a lot more than people think which you are also positive for. HSV2 can cause symptoms similar to many other diseases during a flare such as muscle aches, fever and general malaise.
Posted 7/17/2015 9:03 PM (GMT 0)
Thank you, JoOnTheGo10.

So in a streamlined answer, at this point in my journey, what would you guys do if you were me?
Posted 7/17/2015 9:06 PM (GMT 0)
That would depend on what kind of symptoms you are having and if you have had any testing for Lyme or not.
Posted 7/18/2017 7:03 AM (GMT 0)
Sean, was your first post really back in 2015 or am I reading that wrong? If so, have you figured out anything new since then? Or did you continue with the same doc?
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