posted
I have been suffering from Lyme-like symptoms since last spring after getting a strange rash. PCP tested me for Lyme and many other things, but all negative except EBV. Just got Igenex results, which show a positive IGM Western Blot. My PCP thinks it is only b/c I tested positive for EBV (even though I never had mono, but my brother did as a child!)?? Anyone else have this issue?
Posts: 35 | From MA | Registered: Feb 2008
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Alv
Unregistered
posted
Why is that every body that i talk in mass are said that you have mono/EBV when they all come up as they have lyme and is spreading crazy in that state ?
Ironicly most of them become cronic as they have bart too!
All pcp say the same thing in that state :MONO as no lyme around there.Find an LLMD asap , do not waste your time dealing with them.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you had bands 30/31 show up, IGeneX now can run a confirmation test to show that they come from Lyme Disease.
posted
Your PCP must be amazing! A genius, brilliant.
I say this because it is amazing that he can look at lab work designed to detect antibodies to borrelia and see, in reality, a cross reaction with EBV! Is he clairvoyant? He reads tea leaves so well.
I find this especially astounding since you also have lyme-like symptoms and had some kind of rash! Are these from the previously undiagnosed EBV too? Now I am sure. He is absolutely astonishing in his insight. or.........
He is a jerk disregarding clinical signs and symptoms as well as lab results in favor of some half baked premise that ebv will cross react on the WB therefore his patient doesn't have lyme.
I'm originally from Pa and that sounds like Pa Dutch "pretzel" logic to me. I agree wholly with Alv..........get thine self to a good llmd! ASAP
and best to you! Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Yeah, I am going to a LLMD in 2 weeks. I thought the same thing about my PCP, but just thought I would ask around to see if there was any validity to her statement! Thanks.
Oh, and my Igenex report said that infection with HSV, EBV, HCV and/or syphillis may give false positive, which is why my PCP thought this!! I never had any of these!!
Posts: 35 | From MA | Registered: Feb 2008
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posted
Yes, but do those virus's only cross react if they are active IgM
or can they cross react if they are IgG??
I still dont understand why EBV would cross react with antibodies to borelia?
Good Luck with your DX!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I'd like to know this too, does EBV have to be IGM active in order to cross-react with Lyme IGM? In that case testing for an active EBV infection would solve the problem?
Does this only apply to the 31kda band?
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
My PCP said that I was probably exposed to someone infected with mono in the past (my brother when we were kids), but that the infection was currently not active.
I just found this on the web:
IgM is a sign of a current infection. IgG is a sign of a current infection, or of a past exposure to or past infection by the organism.
So, wouldn't that mean that EBV would have to be an active infection to have anything to do with the positive on my IGM WB (band 31)?? Also, it still wouldn't explain why I was positive for band 30, 41, 58, 83-93 and IND for 23-25 and 39, right?
Posts: 35 | From MA | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Don't let someone who doesn't specialize in Tick Borne Diseases confuse you or the issue.
He probably wouldn't know Lyme even if he had a tick attached to his behind
With a bulls-eye rash around it.
It is not uncommon for EBV titers to show high in people who have Lyme disease.
Your test shows Lyme specific bands. Bands that cannot be positive unless it is Lyme.
Our immune systems get so depressed by Lyme that often latent infections
Such as EBV and CMV, show up as active infections.
Let's see.....
History of tick bite.
Strange rash.
Lyme symptoms.
Postive IgM Western Blot.
These all equal Lyme (in my very humble opinion).
I am sure your PC duck knows nothing about co-infections either.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I thought the WB shows an antibody reaction to the "chopped up" parts (sorry for my unscientific language) of a spirochete, so it mystifies me as to why it can cross react with a virus since a virus is a whole different "animal"...?
Sixgoofykids, would Igenex recommend running the extra test if only the IgG test is equivocal, but IgM positive?
I'm probably asking what's obvious, but I'm still confused.
Posts: 1302 | From USA | Registered: Dec 2002
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quote:Originally posted by Marz: I thought the WB shows an antibody reaction to the "chopped up" parts (sorry for my unscientific language) of a spirochete, so it mystifies me as to why it can cross react with a virus since a virus is a whole different "animal"...?
I believe you are correct!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I think I will just call Igenex on Monday to clarify their false results disclaimer. I need to know if it only applies to those that are currently infected with one of the infections that they list and is it only for those that originally got an indeterminate......
Posts: 35 | From MA | Registered: Feb 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I can't answer most of the questions but this:
quote:I still dont understand why EBV would cross react with antibodies to borelia?
I think because certain "chopped up parts" are the same weight.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi~
The bands on a WB are KDA (a unit of weight measurement) 41 KDA, 39 KDA, etc.
Viruses can and do have parts that weigh the same as the lyme bacteria parts. Or they can share sufficient homology at particular epitopes...enough to bind with Bb specific polypeptides.
I have explained this in previous posts.
For example, CMV can cross-react with bands 34 and 92 on the Bb blot. Parvo can cross react with bands 41, 58, 83.
(Guess what...my last positive IgM WB had bands 34 and 83-93 positive...my CMV titer is elevated--!!)
EBV (acute) is well known to cause false positive IgM WB tests for lyme.
Having said that, in talking with Dr. H at Igenex, he doesn't think it is possible for high IgG viral antibody titers to cross react with IgM WB for lyme.
Dr. T at MDL lab doesn't think a study like that has ever been done.
For now...all I know is that a number of people I know that have high IgG titers to certain viruses also have positive IgM WB tests.
It is in your best interest to also get checked out for viruses, keeping in mind that lyme may be part of your problem too.
posted
Timaca, you noted that ACUTE EBV can cause false positive. I tested as having an infection in the past, so could that also influence my WB?
Posts: 35 | From MA | Registered: Feb 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
As stated in my post, Dr H at Igenex doesn't think that high IgG viral antibody titers could influence an IgM western blot test for lyme.
Dr. T at MDL says that this hasn't been studied yet to his knowledge.
I and my friend both have high viral IgG antibody titers to a number of viruses (including EBV) and we both have positive IgM western blots.
We had both been treated for lyme, we are both now on valcyte, an anti-viral drug. We are making further improvements on the valcyte.
For me, I am considering that my positive IgM WB is more likely due to the high viral load...and would likely treat the viruses first and see if the IgM WB goes negative. The other option is to take more antibiotics, and I don't want to do that before I get my EBV antibody titer down lower.
In your case, I would read up on viral testing, test for more viruses, maybe get a couple more western blots done at various labs, and see what looks most likely in you...lyme, viruses, or both (or neither!).
The symptoms for viral infection and lyme infection are the same....you can't tell them apart by symptoms.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Oh yeah sorry, I missed that connection! Thanks! Take care...
This article was interesting........
Potentially misleading Western blot results in Lyme disease diagnosis
British Journal of Biomedical Science, 2006 by Mavin, S, Evans, R, Appleyard, K, Joss, A W L, Ho-Yen, D O
..."None of the EBV IgM-positive serum samples were equivocal or positive by B. burgdorferi IgG Western blot. This was surprising as there is excessive production of antibodies during EBV infection and cross-reactions are observed frequently in tests for other infections. However, it confirms the lack of cross-reactions observed when Engstrom et al. tested sera from EBV patients with their B. burgdorferi IgG Western blot."
[ 12. April 2008, 05:50 PM: Message edited by: ljaz ]
Posts: 35 | From MA | Registered: Feb 2008
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posted
Well they say the EBV only cross reacts with certain bands correct?
If you have the cross reacting bands maybe get confirmation
BUT I would think if you have other BB specific bands that are not cross reactive to EBV than you probably have Lyme
Now this is just my opinion
I know how confusing this must be for you
I have a High Titre of EBV, but I have always had it because I had mono when I was 14.
I know that that is NOT what is making me as ill and bedridden as I am
I think the virus can certainly have an impact on the immune system, but getting to the underlying cause (Bacteria) will Probably take care of any virus activity...once the immune system can work better
From what I read MANY lyme patients Virus tirtres reactivate when they have such bacterial infections like BB...Maybe because the immune system cant handle both
I wish you the best of luck!!!
I am going to call IgeneX myself......I would like to know this myself!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
A little more on the 30 - 31 confirmation test from Igenex.
Based on this data, we recommend that further testing is not necessary if in addition to 30 and/or 31kDa bands, two of the following bands (23-25, 34, 39,41 and 83-93 kDa), are present on the Western blot. Otherwise, the 30-31kDA confirmation test should be used to confirm whether 30-31kDa bands present on the Lyme Western blots are due to B. burgdorferi specific antibodies or not. If the 30-31kDa confirmation test is negative, we recommend that patient's sera be tested for viral antibodies.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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posted
Thanks, Raymond. I have 2 of those additional bands as positive and 2 as IND, so it seems that Lyme is the cause of my problems!
Posts: 35 | From MA | Registered: Feb 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So your idiot duck has sent you into confusion, eh? At least they are good for something! And here I thought they were all good for nothing!
I think paybacks are desirous in some situations. This being one of them.
Next time you are in contact with the duck.... why not give her something to think about.
Ask her if she has read the CDC info on ticks carrying EBV virus along with other tick borne diseases... and ask if that could be the situation in your case.
There isn't any CDC info that ticks are carrying EBV... but she will have to search long and hard to find it (thinking you know something she doesn't).. and MAYBE... just maybe.. she will LEARN something while rolling through the literature?
You can consider it paybacks for messing with you and filling your head with false information.
We call it an "educational tool"... to have fun with.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
ljaz~ yes, that is the article that some of my info came from. I did notice that they mentioned that in their study, EBV did not seem to cause a false positive IgM response for lyme.
Other studies do show this however. If you do a google scholar search, you will find some.
UnexpectedIlls~ Yes, EBV can make you very, very sick...especially if HHV-6 is reactivated too. Seriously, I personally know a man that was very ill for 18 years...even bedridden at times. And it was viruses (not lyme) that was his problem. (and he had 4 of the 5 bands on his IgG needed for CDC diagnosis of lyme). He is essentially well now, after valcyte (an anti-viral drug).
I'm not saying lyme isn't part of our problem. It can be. I am saying make sure you check for other things. If you have a high EBV titer, check it out more thoroughly.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Timaca, I couldn't open that link b/c I need a password, but I found a bunch of other articles....still all reference acute EBV. Again, my PCP said my tests did not show a current infection, but instead a past infection.
I am also curious about the parallel between CFS symtoms and Lyme...
Posts: 35 | From MA | Registered: Feb 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Yes, all the articles do reference acute EBV, since chronic EBV hasn't really been recognized as an illness, and thus it hasn't been studied.
And I believe from what Dr. T at MDL said chronic viral illness (EBV and others) haven't been studied with how they impact lyme WBs.
Although, as stated before, Dr H at Igenex doesn't think a high IgG viral antibody could yield a false positive lyme IgM WB.
I think it needs to be studied though before any conclusions can be drawn.
In the meantime we are stuck with trying to decide what we are sick with. For me, I'm going with the most likely at this point in time which is viral illness. I do believe lyme was in my past. It may still be there due to the positive IgM WB that I have. However, I am leaning towards that being a false positive. If however, I don't get well on antivirals, and have no other reason for being ill, I will revisit the lyme issue.
Yes, my PCP said the same when looking at my friends EBV labs too "past infection." However, she was seen at Stanford, and the ID doctor there said that these high values could indicate current infection. He put her on valcyte and her EBV IgG titers have dropped (along with her HHV-6 IgG titers). She is feeling better. (Not well, but MUCH better).
Do some reading at www.hhv-6foundation.org Read the testing link there. Also read the patient's forum. My friend is Brita. I'm Timaca.
I don't understand your comment about being curious about the parallel between CFS symptoms and lyme....could you elaborate? Perhaps I can answer that question for you.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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adamm
Unregistered
posted
google quasi at the quackadero. see if you can spot your doc in it.
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It is all so frustrating.....symptoms overlap, tests aren't accurate, nothing is conclusive! The symptoms of CFS and Lyme (and a bunch of other illnesses) seem to be one in the same and the only way to diagnose them is based on symptoms, so how the heck do you know what you have (especially if you don't recall a tick bite)??? I guess just trial and error using different meds, huh?
Posts: 35 | From MA | Registered: Feb 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
ljaz~ I agree, it is frustrating when the tests aren't all we might like them to be.
That is the reason for a THOROUGH work up by a number of different doctors to rule in and/or rule out various diseases.
I've been examined by several neurologists, rheumatologists, internal medicine doctors, infectious disease doctors and lyme doctors.
I've had more tubes of blood taken from me than imaginable, I've had urine tests, chest x-rays, brain spect, brain MRI, lumbar puncture, EKG, echocardiograms, nerve biopsies, nerve tests and I've probably left something out.
The only thing that comes back abnormal are high viral antibody titers and western blots suspicious for lyme.
I have treated for lyme in the past, and I had significant herx reactions (read: put me in the ER)...and I saw significant improvement. But, I did not get well.
Now I'm treating the viruses, since I seem to have more antibodies to those than to lyme. Once I feel that those are adequately treated then I'll see how I feel and what looks abnormal test wise.
In your case (and in everyone's case) I would advise getting a very thorough work up by several doctors. I would never advocate jumping at a particular diagnosis and undergoing treatment without getting a proper work-up.
Once you've had a thorough work-up done (including lyme panels and viral panels and anything else any doctor can think of) then assess what looks abnormal and treat it.
Best wishes, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I too have been examined by numerous doctors over the past year (Neurologist, Rheumatologist, PCP, ENT, etc.) I will be seeing an Infectious Disease Specialist this month.
I have also had tons of blood tests, urine tests, CT scans, brain MRI, nerve test, ultrasounds, etc. (not as many tests as you though I am sure!) The only abnormalities are high EBV antibodies and a positive western blot for lyme.
Hopefully the ID Specialist can help me with some meds.....
Thanks and take care!!
By the way, I agree with all the above descriptions of my PCP......she has been of no help to me other than to order some initial tests. After that, she never did anything except tell me that she didn't know what else she could do for me (nice, huh?) I only had her order the Igenex tests b/c I needed a dr. to sign off on the form!! I will not be seeing her again.
Posts: 35 | From MA | Registered: Feb 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
ljaz~ It sounds like you are doing the right things. Now, it is very likely that the ID doctor that you will see soon will not know much about the ILADS view of lyme, nor will he likely be aware of the work at Stanford on viruses.
So, do lots of reading on both the ILADS site and the HHV-6 site. Print out some articles for the ID doctor to look over.
Suggest that he consider attending the HHV-6 conference in June in Baltimore (at least the satellite conference).
Consider getting tested for HHV-6. If it is determined that your EBV is the only virus elevated, then valtrex is used. If HHV-6 is involved then valcyte is used. Use Focus lab for this test, for then you can compare your results with Dr. Montoya's work (which will be made public in June at the above conference).
Good luck! Post back when you see the ID doctor.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Oh, I forgot to mention that he is also a LLMD. I will definitely discuss all of your recommendations with him. Thanks! I will post back after my appt. next week.
Posts: 35 | From MA | Registered: Feb 2008
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