posted
This was the results of my daughter's bloodwork. Did anyone here test this way then weeks or months later retest and have more positive bands that were then considered positive by CDC standards?
Posts: 7 | From NJ | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
My son tested + for only Band 41 as well, but he has a + Bartonella test as well.
Many people speculate whether this means Lyme. I for one, do think it is indicitive of Lyme.
If you look at Dr. B's WB description, Band 41 is very meaningful. It is the Flagella/Tail associated with the Spirochete.
Many people will argue this topic day in and day out, but we have been treating my son for 2 months now and have seen drastic improvements.
He has yet to test + for more bands........
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Thanks. Can I ask....is your son being treated with oral antibiotics or IV? Even though my daughter has tested negative her pediatrician has her on oral antibiotics. I believe it's to be on the safe side until she is seen by the cardiologist and rheumatologist to try to figure out or rule out other infections. I have seen no improvement in her and she's been on it for over 3 weeks.
Posts: 7 | From NJ | Registered: Apr 2009
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bettyg
Unregistered
posted
steph, welcome; you are NOT going to see improvements right away; they are going to have to HERX/side effects of taking antibiotics to KILL SPIROCHETE that are in her body.
this takes months depending on how long she was bitten vs. getting treatment.
print off dr. c's western blot igm and igg explanations ...read it over and over to get a better understanding ok.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
My niece tested ++ for band 41 on whatever test her doctor usually orders (LabCorp or Quest).
With that in-hand, her mother ordered an Igenex test and she came back positive on several other significant bands. I don't think she actually qualified as CDC positive, though.
At any rate, she is considered positive for Lyme and Anaplasmosis and is being treated by a LLMD now.
She has clinical symptoms as well.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
steph5555:
He is on oral ABX. He has definately made some progress in just 2 months.
Like bettyg had said, more times than not it takes time to notice any real improvement.
As with my son we noticed he has more mood swings. One minute he will be attached to your hip, the other he doesn't want anything to do with you.
One MAJOR improvement is his verbal skills. He is now putting between 4-6 words together as opposed to 2 before. He is almost 3.
I wish you and your family the best!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I agree with Kreynolds. You are not going to get a clear answer on band 41 and you probably never will... It's a very debated subject... just like lyme itself. LOL.
There's a LOT of past posts if you do a search asking about this band and a TON of information on it. I myself think it's very indicative of lyme especially if you have symptoms and have been tested for multiple other things and those came back negative/normal.
Here's some awesome info on why band 41 can definitely mean lyme:
Here's what someone on another community has said about it: "If you haven't been sleeping around (syphilis) .... and your teeth are in good shape (gum disease, gingivitis) .... and you have symptoms of CFS and FM then suspect Lyme. Here are the reasons:
The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:
1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: '' Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,'' since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means ``the spirochete remains alive throughout the illness.''
In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.
2) Yale and CT Agricultural experiment Station- the full pdf:
Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis.
Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA.
Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.
Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs). In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens. The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi. Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections. PMID: 8788993 [PubMed - indexed for MEDLINE]
quote: -------------------------------------------------------------------------------- Greatcod Frequent Contributor Member # 7002 posted 09 September, 2007 11:30 AM
This is an email I recieved from Randy Sykes in CT. Yale patented an Bbabd 41 test which they claim is 94% accurate, then mothballed it.
"Yale says don't pay attention to band 41 because it means nothing. Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate.
These are the people who have been working to hang DR. Jones for treating lyme disease and refuse to respond to Attorney General Blumenthal's subpoena. This test has been put in moth balls.
US patent # 5,618,533
Also the second link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease. He also states that you can tell the difference between these illnesses by a clinical diagnoses. All the lymies have band 41 but few people produce many other bands, Randy Sykes
TerryK Frequent Contributor (1K+ posts) Member # 8552
"Totally weird that a control group would have any known infections, let alone a spirochetal infection. Does this make sense to anyone? Does anyone know or have proof that this is true?
http://en.wikipedia.org/wiki/Allen_Steere Most troubling, Steere chose to make 20% of his control - 25 serum samples - serum derived from syphilis patients. While this group formed 20% of the control, the disease's annual incidence in the United States is about 3 cases per 100,000 - an incidence of far less, by a multiple of 300, than 1%.
This statistical manipulation dramatically impacted the importance of the 41 KdA band on blotting, because syphilis cross reacts with Lyme blots at 41 Kda due to their both possessing a key flagellar potein structure.
It has since enabled Steere and his cronies to confabulate that seroreactivity to the 41 kDa antigen is 'normal', when in fact it is largely only seen in advanced spirochetal infection - usually only in gingival infections when visible pus-filled pockets are present."
what steere etc. have distorted is the relative importance of the 41 kDa band. I pointed out the israeli frequency because the same studies in america demonstrate that about 40% of the pop carry positivity to the 41 Kda band {in endemic areas}.
In israel, it is something like 8 %. Israel doesn't have Bb, but does have related relapsing fever borrelia. what I am saying is that due to its constitutive expression, the flagellin band is probably the Best indicator of exposure/ possible latent infection, and is probably the mainstay of the ab response no matter stage of infection.
Bb differentially regulates protein expression of surface proteins, such as osp a, b, and c. They are regulated according to stage of infection, tissue type, and microenvironment. VlsE, another surface protein, is also regulated in this manner. However, flagellin is not differentially expressed.
What happens in very late CNS disease? No one really knows, BECAUSE IT HAS NEVER BEEN ADEQUATELY STUDIED. THE STEERE CRITERIA were designed for early, acute disease. As far as I know, VlsE is not transcribed in the CNS, and flagellin is one of the only proteins I know of that IS transcribed.
Steere intentionally 'swift-boated' the relative meaning of the flagellin ab response. Sure, you see a cross-reaction in people who don't have exposure to Bb, BUT IT IS MUCH LOWER incidence than we are lead to believe. Typically, wrt oral spirochetes, a response is only seen when the gums are visibly infected.
As far as the poles go, and other europeans, I'm fairly certain that the 41 band they demonstrate is reflecting exposure to Bb. However, it is NOT the same strain of bacteria we see in the US. And did you know that in Europe, only 3 bands are necessary on WB to be regarded as positive? Did you know that DOGS in america require only 3 bands to rate a positive?
That's right folks...under the steere criteria, we are treated worse than DOGS. --------------------------------------------------------------------------------
quote: -------------------------------------------------------------------------------- From a seasoned poster:
the number of people exposed is in the millions. the reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. the bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
they don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
this statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. it allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Now, let me tell you about the real DARK SIDE of the steere/dressler criteria.
These criteria were designed to enable one thing: a vaccine trial for the OspA vaccine. That's why the band to OspA at 31 KdA was left out of the criteria for positivity, even though it is very specific to Bb.
Why then was it necessary to distort the importance of the flagellin response? I'll tell you why. It's because they had to test the vaccine in an endemic area.
And a significant percentage of vaccinees were ALREADY SHOWING seropositivity to Bb exposure and possible latent/asymptomatic infection as manifested by the 41 band and maybe a few others, but not enough to be 'positive' by CDC standards. {remember, in europe 3 bands = I have lyme disease, in the US, 3 bands = normal}.
In other words, they had to run a vaccine trial on a group of people who had already been exposed or infected by Bb. If you utilize scientifically honest criteria, then YOU CAN'T DO THE TRIAL, BECAUSE A LARGE NUMBER OF YOUR VACCINEES ARE ALREADY INFECTED OR EXPOSED BEFORE THEY EVER GET THE VACCINE.
So by using less restrictive criteria, you create a situation in which there is no way to distinguish whether or not the vaccine is effective. Basically, a lot of people got a worthless vaccine.
this paradigm...which plunged thousands of vaccinees from infected areas into an unknown realm {what happens when you vaccinate someone who has already been exposed, or is manifesting late stage latency} and MAY have been the reason we saw so many reports of adverse reactions.
Individuals who were carrying latent infection, as manifested serologically by a limited ab response, these people were CUT OUT of the medical community, and they had to pretend nothing was wrong with them.
And wrt [with regard to] lyme encephalopathy, Bb protein expression primarily in brain years after initial exposure, that has never been studied adequately to know what is signficant and what is not. All we really know is that flagellin is constitutively expressed even in brain infection."
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
A positive Elisa would convince me.
That isn't very common.
Especially in a child.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I'm hoping the cardiologist or the rheumatologist figure out what's going on. She still tells me her belly, heart and knees hurt. She is going to be retested this week for lyme and a number of other things. I think the attitude is to rule everything else out then go back to the lyme if everything else is negative. That's fine with me but all these tests take time and my daughter isn't getting any better. Thank you all for your replies.
Posts: 7 | From NJ | Registered: Apr 2009
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