posted
Yes, you read that right. Not the other way around.
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:
posted
I never came up for reactivated mono on about seven tests over a year.
I then found my llmd. He also ran the EBV test, and it came up positive as reactivated. I almost told him not to run it I came up negative so many times.
My regular GP said that when the EBV reactivated comes up positive it can also point to other underlying infections.
My LLMD said that my immune system is wrecked from lyme and bart, thus the EBV reactivation.
Just my two cents. I have no clue if your doc is right, or not, but I expected my GP to kick me out when I talked about having lyme.
He did not, and told me to continue treatment if it was making me feel better. His only concern was with the time I would spend on antibiotics.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is this ND ILADS "educated"? Has he gone through the ILADS Physician Training program?
That is the first question of many.
You say he is highly regarded in your locale. By whom? By those who are ILADS "educated" and very much tick-borne disease literate? If so, that would be good.
Many with lyme can also have EBV, of course, and it does make sense to treat the EBV while you figure out just how lyme literate, etc. this doctor is. But get busy now to find a better doctor.
A red flag is that if he actually said this: "no false positives" claim that is proudly thrown around in the Lyme community is crap, . . ."
If he really used that term "crap" with the attitude that usually goes with it, that is of concern.
If he said something in a more neutral tone such as, "well, let's just slow down a bit and consider all the possibilities . . . " that would be very different mindset.
I would make an appointment with an ILADS educated LLMD were I to be you.
And, by the way, that article has problems. The authors are very much in the dark about lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey rowen,
1.) The study you cited states- "In a patient with suspected Lyme disease who was followed-up but not treated for Lyme disease for ⩾1 week, failure of the anti—B. burgdorferi antibody response to progress is strong evidence against infection with B. burgdorferi [4] and indicates the need for an alternative diagnoses."
Personally I think that is wrong. An antibody response can variate for numerous reasons and does not have to "progress", including the woman's monthly cycle. If you did the same test the same day multiple times it can vary in the results.
2.) Your bands- some of them- are specific for Lyme. Think of it as eating a frog. If you didn't eat a frog, why would the frog test indicate you've been exposed to frog ears? Or frog toenails? Or frog eyes?
Kinda of like the IND bands. No such thing as being a little bit pregnant. You are or you aren't.
3.) History is important. Were you in an area where you could have been exposed to ticks? Did you have a known tick bite? Even if you don't think you were- in 50% of reported cases the patient does not remember being bitten, so that is not unusual.
4.) I don't remember many people who had Lyme in the later stages that didn't test positive for Epstein Barr. I am sure it must happen, but it isn't that common.
5.) What is his/her treatment for Epstein Barr? From what I understand there aren't really good treatments for it.
6.) Often when a person is treated for Lyme their Epstein Barr will fade away.
7.) Some people always show a positive test for Epstein Barr after exposure. There are various parts of the test. Do you know what readings showed positive?
I can't give you a 100% correct answer, but knowing what I do now, I would like to treat the Lyme and see how I feel, then address the Epstein Barr if it were still a problem.
Here is a list of bands so you can check yours against the list.
posted
I've read this...my question is, does reactivated EBV have all the symptoms that Lyme has? I thought mono just gave people a sore throat and made them feel run down.
Posts: 63 | From Columbus, OH | Registered: May 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm so glad to see that Tincup was writing as I was, too. She has excellent points that I could not verbalize. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I have read on many chronic EBV boards, before I got my lyme diagnosis, and they have lyme symptoms.
It makes me wonder if their underlying problem is lyme related.
My symptoms progressed from anxiety, painful lymph nodes, to other more serious problems like horrible fatigue, joint pain, ocd, panic attacks, burning sensations, tingling, ect..
I am currently taking a week break from ALL antibiotics. I am still on my antiviral. I have had old symptoms returning all week. If it isn't lyme, which I highly doubt, it is surely a bacterial infection of some sort.
The EBV is just a sign that something is wrong with the immune system when it reactivates. Most people have had EBV. I did when I was seventeen.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis." -- Dr C of MO
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Band 83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
Band 93: The DNA or genetic material of Borrelia burgdorferi."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
A lyme infection can re-activate a latent EBV infection because EBV resides in the b-cell. Lyme disease, after 3 initial weeks (or therabouts) of the immune system Th1 response converts to a Th2 response in the body and stays in that mode. When this immune system shift happens - something happens to the b-cells that have EBV in them and they are re-activated from their latent phase and the lyme infection then becomes chronic. It has something to do with the b-cells that don't function properly with the borrelia. This is where some of the new research that says chronic lyme can be likened to being leukemia like (not relating to cancer but relating to the immune system) in that it has to do with an incorrect b-cell response in the chronic stage.
So I would say an EBV positive can help to confirm that a lyme infection may be present as lyme may have reactived it.
A new research article came out as well that parasites can activate latent viral infections (such as EBV, CMV, etc.). So if one gets a parasite, they may in turn activate EBV.
Been really reading about this stuff the past few days. EGCG helps to keep EBV from replicating.
Posts: 123 | From Washington State | Registered: Dec 2013
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
SLML what is EGCG? Your post is VERY interesting to say the least!
FWIW dd has been treated for EBV for YEARS with antivirals such as Valtrex. She was involved in that trial with Stanford back in the day with Valcyte to no avail.
I really don't know what to make of it all at this point. She has Chronic Lyme for sure. She recently tested + for EBV during an episode of illness (coughing was the main sx). EBV doesn't cause coughing. Her LLMD suspected Cpn so she is on Zith. Time will tell.
Posts: 1885 | From here | Registered: Jul 2012
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Was the EBV "Early Antigen" test run?
Negative or positive?
I'll best not even tested.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Also was the sample re-tested for band 31 - positive or negative epitope?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
quote:Originally posted by Lymetoo: I don't believe in false positives.
Most Lyme patients have EBV and Lyme, by the way.
Agreed. I have at least 13 coinfections living in my body.
Posts: 2839 | From California | Registered: Jul 2012
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posted
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?
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
You have several coinfections along with Lyme. Your test results were similar to mine.
Posts: 2839 | From California | Registered: Jul 2012
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I had Epstein Barr long before I had Lyme. Totally different symptoms than Lyme. EBV gave me extreme fatigue (and a sore throat) and that was it.
Had Epstein Barr reactive with Lyme. Totally different symptoms than Lyme.
Not sure what IND means on western blot. Either you have the antibodies or you don't.
Suggest you get a second opinion.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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quote:Originally posted by Judie: You have several coinfections along with Lyme. Your test results were similar to mine.
How do you come to this conclusion? The LLND didn't say anything about me having co-infections, even when i asked. He said that would be a totally different test.
Posts: 13 | From danville, ca | Registered: May 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
The original article that rowenofpts posted about EBV triggering a false positive involved "Steere" in it's citations for the study. Any study involving Alan Steere is complete crap.
Those test results look similar to mine. Positives all over the place.
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Idk if you can include Parvo or mycoplasma or EBV as coinfections to lyme. They are dormant infections that most people have been exposed to. But they are not tick specific coinfections.
Lyme unbalances your immune system, then those dormant viruses and bacterial infections that you'd normally fight off easily, may become a problem.
Same with yeast. Everyone has it in their body but once the immune system is comprimised, yeast jumps at the opportunity to grow because that's it's innate job, to grow.
Same with mold.
Glad that you are questioning this Dr's whether this Dr. knows lyme. That W. blot test shows very specific lyme positives. 31,39.
First off - your name is located on the bottom of each document and on the last page your doctor has their name in electronic signature form. It looked as if you wanted to block out personal details - so this is just to let you know (if you want to edit your post/document to not include that information).
All the areas where you have a 'high' show activated viruses. HSV, HHV, Parvo, Myco. It means your immune system is activated right now - although you may not be experiencing active symptoms of all the viruses.
These viruses can be activated by a lyme or parasitic infection or just on their own.
Your CD57 is at 82 which is in normal range but low.
To answer your question about false positives - we have a family friend who passed out in his house and hit his head on a sharp object and went to the hospital. Apparently, they tested him for lyme disease and he was very positive (thus the passing out)and gave him antibiotics and he was fine after that. This family lives in Lyme County, USA (that's a joke...but not really!!). Anyways, when he gets bloodwork done he still tests positive although he has no symptoms of the disease. Go figure. I test positive and I do have symptoms still but my lyme infection was not caught/tested for in the beginning like his was. I found out 4 years after I was infected.
Posts: 123 | From Washington State | Registered: Dec 2013
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posted
someone alsked about IND test results, and that means the bands were as strong as the reference band they put in the test. Other labs only report the bands that are stronger than the reference band. Ignex reports the bands that are as strong as the reference band, and there are even weaker bands that show up but are not reported.
---interesting abut that B cell stuff. Now a second larger study on ME has been done on rituximab, and it cures ME sufferers by depleting the B cells.
- Another interesting thing about EBV in here is what that Lyme Cryme lady keeps posting, it has something to do with the chronic stuff together with some mold things in a complex.
Posts: 366 | From Europe | Registered: Nov 2008
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