posted
A little more than a year ago, my general practioner diagnosed me with lyme after having a "very positive" elisa titer test.
Since then I have been treated with Doxycyline, amoxicillian, Ceftin, minoclycline, and now with Omnicef under the watchful eye of an LLMD nearly two hours from my home. His decision to treat me was on the basis of the positive Elisa and a clinical diagnosis.
Since no improvement has been noticed, my LLMD ordered a western blot and also a Batonella titer to be completed.
The results of the Bartonella Titer are negative. The Western Blot appears to be negative but can anyone help me out with this?
Bands 41 and 23 were stated as being present under the IgG Western Blot. All other bands were absent. The IgM Western Blot indicated that all bands were absent.
The test did state that if bands 23 and 41 were present after an equivocal or positive elisa, then Lyme disease was indicated.
What does this mean? Have I spent a year on antibodies for nothing?
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Jed.
The fact that bands 41 and 23 were positive following a positive ELISA means that you surely have lyme.
While 41 isn't specific, 23 IS specific. Meaning, nothing else can cause that band to show up.
Did you test through IGeneX for your western blot? Other labs omit bands 31 and 34 entirely from their testing. (See Dr. C's western blot explanation, stickied above -- read thru the whole thread).
If you've treated for a year with NO improvement, you might look at coinfections -- how about babesia? You might send a blood sample to Fry Labs (see Newbie Links above). They are quite good at detecting it in blood smears.
Good luck - glad you have an LLMD and a local doc who are tag-teaming you. We don't often get local docs to help but it sounds like yours is a gem!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sometimes the fewer bands that show, the sicker you are.
That is according to my LLMD.
Was it an Igenex Western Blot?
Co-infection testing unfortunately isn't that reliable either.
Continue to treat.....obviously you are not symptom free.
Also continue to look at symptoms for co-infections.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Your answer is as stated on your test result!
Your doctor treated you clinically and got an elisa positive blood result to back him up.
Why was'nt a western blot done immediately when you showed positive with the elisa?
They(the laboratories)usually continue with a western blot when an elisa is positive.
You show two of the bands I have on my positive IgG which really means nothing at this point because you are already being treated clinically.
If it were me, I would take this as being still positive with at least two strains of something.
It is recommended that if the patient shows no signs of improving that the clinician is to look
elsewhere for an explanation. Perhaps your clinician is trying to find which co-infection
of Bb, or particular strain of Bb you happen to be still infected with, which is an excercise in
futility due to the lack of research in this area.
Again if it were me and my symptoms tell me I am still not well clinically. I would continue
with abx treatments and try a different family until I achieved either a J. Herxhiemer effect or cessation of symptoms.
But, gee, what do I know!?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
The diagnostic testing is very tricky and unreliable, hence the importance of a good LLMD.
Regarding the test results:
This may not be a popular response but scientific literature supports that 'false positives' for band 23 can be caused by a number of things (i.e. mono, syph., mammalian tissues). For this reason, in my opinion, it is not appropriate for any of us to rely soley on one positive antibody band to allow ourselves to be diagnosed with Lyme. On the other hand, negative test results do not mean one does not have Lyme either. It is important to do a differential diagnosis to rule out other disorders or conditions that could cause false positive WB results or symptoms.
I'm not a doctor but I think the fact that you had a positive ELISA AND have IgG band 23 AND 41 certainly supports that you had Lyme. Whether you currently are still infected or not is difficult to determine based on currently available tests. Running a PCR is always an option but it is like trying to find a needle in a haystack.
Be sure to talk to your LLMD about your questions and concerns as he/she has your medical history and is better equipped to answer your concerns.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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posted
Somebody previously posted that if you've been treating for that long with zero improvement then hypercoagulation might be an issue.
May the antibiotics aren't reaching the bacteria, they might be cloaking themselves in fibrinogen.
Did you ever have any herx reactions?
Of course, as others said, coinfections might also be the issue.
Posts: 655 | From USA | Registered: Sep 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I read and thought....hmmmmm.
While it is true band 23 can be a false positive....
I was diagnosed based on that band and a multitude of symptoms.
Mind you the other couple of hundred blood tests were negative for anything/everything else.
Lyme is a clinical diagnosis. I was thrilled to be diagnosed.
Not that I understood what that meant, but I knew something was wrong with me.
The more I searched, the more I realized that Lyme was the probable culprit.
Since my diagnosis, my husband children and 11/12 neighbors have been diagnosed.
Most of them CDC positive.
So....while there is scientific research to support a possible false positive
On band 23, the likelyhood still isn't that great.
Especially when exhibiting (in my case) 57 out of 75 symptoms.
Just my very humble opinion of course.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I was unaware that band 23 would cross-react. Obviously some bands can and do; however, I had not read that about 23. Can someone update me with a citation? Here is what I believed about the individual bands on a western blot:
9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients
Thanks!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I thought the same as you Michelle.
I knew 41 could indicate a false-pos because it is the flagellate tail, common to other spirochetes.
I too, thought band 23 was Bb specific & would only be positive in the presence of Bb.
It may be homework time again for me.
Did you have any Babesia Symptoms? I had a pos Babesia & had to get rid of that first to be able to pull more positive bands on the WB. It took me several rounds of Babesia Tx & Several months Bb Tx before more bands started turning up positive.
Was your Tx started right away? If you had early inadequate ABX Tx, prior to the LLMD, that could also thwart the AB response.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Hello all...since I started the 'band 23' piece, only fair that I provide a scientific reference:
"Diagnosis of Lyme Borreliosis" by Aguero-Rosenfeld, etc. published in the Clinical Microbiology Review, July 2005.
This is the literature that the CDC stands behind. I have had some back/forth with the CDC on some of details in this publication. For those of you who will venture to read this (too long to post here) notice Table 4 and the ability of current testing to pick up Lyme when there is neurological involvement....even this report acknowledges the ELISA misses 21% of people....don't get me started on this one!!
Anyway, I do believe there is a great deal of merit to band 23 cross-reacting with other things. That's why it is so important to have another band present (decreasing the likelihood of 2 false positives). However, what is difficult here is that because the testing is so flawed, it isn't to say that many of us don't get a false negative for another band (meaning you may have a positive band 23 and a false negative band 39).
Clinical diagnosis (including proper exclusion of other illnesses) and response to antibiotics is obviously very important. Serological testing, unless it gives a screaming, 'classic' positive response, is really only a small piece of the puzzle. Just like a negative result may mean nothing, I also believe only one positive band should mean nothing in terms of diagnosis and treatment...if symptoms are there and other diseases are excluded...certainly fair to assume Lyme.
I had a positive band 23, 39 and 41 IgM response (with a limited IgG response after many months of being sick and treatment) and I have been told by respectable 'ISDA-thinking' doctors and the CDC that I do not have Lyme. Of course my LLMD would disagree. The answer is probably somewhere in the middle.
My point being, I have spent a great deal of time trying to really understand the limitations and interpretations of the testing to make the right decision for me. Unfortunately ISDA and LLMD don't have all of the answers because we are limited by the lack of research and good diagnostic tools.
Really unfortunate that we have to sift through all of this ourselves....
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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