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#4768 - 01/06/10 12:06 PM
Newbie seeks advice...
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Dante
New Researcher
Registered: 01/06/10
Posts: 2
Loc: Asheville, NC
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I am also very concerned but I have the opposite problem from the one I was just reading about -
I'm a thirty two year old female and I used to be very athletic, I was a serious hiker, I served as a trail guide for eight years and I was also a 1st Responder in the local S&R group. I've suffered varied and increasing ill health ever since a case of “atypical flu” about 14 years ago. And it keeps getting worse. I have trouble reaching my mailbox now.
Recently a very dear friend of mine was diagnosed with chronic Lyme and I went with her to all her appts, etc. I now know a whole lot about Lyme and suspect I have it – worse yet, my friend and my friend's doctor agree with me. My doctor agreed – under protest – to do the ELISA test (but only the ELISA) and it has come back negative. How negative, or which strains were tested for, etc, I do not know.) But I am concerned, I have read about test reliability, I have a vast majority of the symptoms, two doctors and a chiropractor think it's Lyme but are afraid to order the test for a non-patient (and considering what happened to local expert Jemsek of Jemsek Specialty I don't really blame them), and I have read about test reliability at many many places now. I know about false positives, but I have also read that a test of a person WITH the disease will only test positive 39% of the time.
My doctor refuses to pursue this any further and says that it's all in my head. Sounds like I need a Lyme Literate doctor and some of the more reliable tests ordered...but I have no idea where to start. Please advise me.
Thanks.
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#4772 - 01/08/10 04:45 AM
Re: Newbie seeks advice...
[Re: Dante]
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Rich_skiweasel7
Forum Veteran
Registered: 12/29/06
Posts: 178
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The Elisa is worthless. Especially for late lyme. I would recommend the Western Blot through IgeneX.
It is helpful to be under some treatment, either "high dose" antibiotics (see Dr. Burrascono's Guidelines - http://www.lymediseaseassociation.org/BurrGuide.html ) or other, for 3 weeks prior to the blood draw. Since the Elisa and Western Blot look for antibodies, some people are too sick to produce them. A few weeks of a good treatment seems to get the body fighting again and able to produce the antibodies. But I still would not bother with the Elisa. There is no point to taking it when there is the Western Blot.
IgeneX tests are more sensitive and will report faint bands (they report inconclusive, slightly positive, positive, strong positive). They also test for all lyme specific bands (not just the CCD criteria bands that has not been updated since the 70s). Read below about what bands to look for.
You can order the kits from IgeneX and take them to any lab. My LLMD suggested a specific lab as some labs often do it wrong. I really don't know how other labs mess things up. The blood draw should be done Monday, Tuesday, or Wednesday and then mailed off (I think that is included in the kit). If done later in the week, the blood may not get to the lab until Monday (I think they are closed over the weekend). I think if the samples are more than a few days old, they are no good.
Good luck and take care,
-Rich (skiweasel7)
--------------------------------------------------------
UNDERSTANDING LYME
WESTERN BLOT
Charles Ray Jones, M.D.
Madison Towers
111 Park St., Suite F
New Haven, CT 06511
Tel. 203-772-1123•Fax 203-772-0682
UNDERSTANDING LYME WESTERN BLOT
There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.
Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Western Blot IgM surveillance criteria includes only two Borrelia burgdorferi genus specie specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi genus specie specific antibodies.
CDC Western Blot IgG surveillance criteria includes 18 23 30 37 39 and 93 and excludes bands 31 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus specie specific antibodies in a Lyme Western Blot IgG and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including the Borrelia burgdorferi induced Lyme disease.
CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28 41 45 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus specie specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus specie specific antibodies.
This does not make sense.
CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 7000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA’s. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives not false negatives.
Rev. 8/23/04
---------------------------------------------
9 cross reactive for borrelia
12 specific for Bb
18 unknown
20 cross reactive for borrelia
21 unknown
22 specific for Bb probably the 23/25 band
23/25 OspC specific for Bb
28 unknown
30 unknown, probably Osp common in Europe
31 OspA specific for Bb
34 OspB specific for Bb
25 specific for Bb
37 specific for Bb
38 cross reactive for Bb
39 major protein of Bb flagellin Bb specific
41 flagellin protein of all spirochetes;
45 cross reactive for all borrelia
50 cross reactive for all borrelia
55 cross reactive for all borrelia
57 cross reactive for all borrelia
58 unknown but may be heat shock Bb protein
60 cross reactive for all borrelia
66 cross reactive for all borrelia
83 specific antigen for the lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein as 83, just measure incorrectly
Edited by Rich_skiweasel7 (01/08/10 04:48 AM)
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#4790 - 01/20/10 12:03 PM
Re: Newbie seeks advice...
[Re: Rich_skiweasel7]
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Dante
New Researcher
Registered: 01/06/10
Posts: 2
Loc: Asheville, NC
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Okay, good to know (if scary). I will set about following up on this informantion. Thank you very much.
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