AliG
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Member # 9734
posted
I've decided that I must be REALLY stupid. What seems to me to be a matter of common sense, apparently is not. There must be other explanations that I just can't seem to come up with.
How do you get even one species specific positive Western Blot band without having been infected by Bb?
can someone please tell me how the thought that you need multiple bands can be even remotely justified?
Thanks. Ali
[ 26. October 2006, 01:16 PM: Message edited by: AliG ]
-------------------- 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
Good Question. I'd like to know that myself. My Husband only has one band,41 on the IgG, and no bands on the IgM.
Posts: 158 | From PA. | Registered: Jul 2006
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posted
I don't know if this is helpful but some info on the bands (from various sources that I have on file):
-Band 41 relates to the flagellum, or tail, of the bacteria. Many bacteria besides Lyme have a flagellum, so this band alone without looking at symptoms and history should not be used for diagnosing Lyme.
-Band 41 shows up in 85% of those with Lyme, 42% in those that do not have Lyme, and 75% of those that have Syphilis.
Other bands like 58 are more indicative of Lyme. It shows up in 36% of those with Lyme, but only about 2% in those that do not have Lyme and 3% in those with Syphilis.
Other bands like 23-25 only show up in those with Lyme. So certain bands cary a lot more weight than others.
If you have just recently been bit by a Lyme carrying tick you may not show any bands, since it takes your body time to create the antibodies.
The Igm antibodies show up first and then the Igg. Also, if you have had Lyme for along time you may not have many or any bands as your immune system is worn down.
Sadie
Posts: 115 | From new york | Registered: May 2006
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posted
Lymetoo, I don't know if this is what you want but will post anyway:
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
Sadie
Posts: 115 | From new york | Registered: May 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I believe I'm neuro-herxing. Either that or I'm getting worse. I've been trying my best to find a local Ped LLMD for my daughter & it looks like that's not going to happen.
I think in my current condition I really have to figure out how to get her to Dr.J because I don't think I can explain adequately to advocate for my daughter's treatment. I would hope that with his vast experience it would be less mentally challenging for me.
The more I read the many controversies, the more afraid I become. What if I'm wrong and the treatment somehow radically damages or emotionally scars my little one for life.
My daughter and I both have 23 Kda pos. IGM and I'm once again trying to figure out the rationale for IDSA et al in duckdom for requiring more than one genus/species specific band to make a confirmation of clinical diagnosis.
I don't know if it's my herx, but I really can't understand how there is any controversy about that.
I can't understand how my daughter's ped could call me with a "negative" test result after I showed up at her office and insisted she write a script for the test and then file the results in my daughter's chart without my ever knowing that two positive bands were there (both Borrelia, one burgdorferi)
I had been trying & trying to make her understand that I instinctively know that something is seriously not right.
My daughter's had repeated illnesses and mysterious rashes, complaints of severe joint/muscle pains, mood swings, ADD-like distractability, hearing and vision problems that come and go, sleep issues and bouts of stress-triggered flu-like illnesses.
She's also been having some issues with reversals of letters and numbers lately.
She had repeated ear infections as an infant, despite being breastfed and having the pneumococcal vaccine. She was given the flu vaccine last fall and still seemed to come down with the flu.
I also seem to recall reading something about birthmarks somewhere and she does have a rather unusual one.
After the "negative" results, her Ped duck convinced me that I was overly concerned. (Only 41KDa IGG, 23KDa IGM) I still don't understand why anything more than ONE species specific band would/could be required for confirmation of symptom-based diagnosis by anyone's "guidelines".
How does that IDSA spit fly?
Thanks for the great breakdown of specifics. that's wonderful info to have!
[ 27. October 2006, 01:44 PM: Message edited by: AliG ]
-------------------- 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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bettyg
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posted
Ali, so sorry to read of your continuous problems and especially getting a LLMD for your precious daughter.
Glad you got some answers on the numbers above. Hugs, kisses, and PRAYERS being sent your way. Bettyg
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sometimesdilly
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posted
Ali-
You are going to do the right thing for your daughter because you love her, because you won't rest until you get answers that make sense to you, and because you'll do whatever it takes to help her get well.
Its terrifying making these decisions for a child, but you WILL get it right.
And in case you haven't seen these articles by Dr. J already;
Dr. J's Approach to Reading Western Blots: A Wise, Common Sense Position
Dr. S's Introduction: Let Me Help You Understand Common Clinical Basics.
One of the happiest days of my recent career was when this 75 y/o veteran doctor, beloved all around the USA for his treatment of over 6,000 Lyme infected children, agreed to treat my children. His reading of Western Blots is not effected by any Big Government agencies. He is not accountable to any lab oversight government entity. And no one at the CDC, FDA or any medical board in the USA has his massive experience in treating Lyme in youth and reading Western Blots. So read below his clear and convincing reasoning on the interpretation of the Western Blot.
Before I offer Dr. J's material, let me put in them in context, and share a few basics. First, the Western Blot measures the antibodies your body makes to attack the Lyme infection.
Also, it is important to note that like most progressive Lyme experts, Dr. J assumes you have a Western Blot from IgeneX, which is an internationally famous, tick-only lab, with full lab certification. Other massive cheap national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms.
However, if you have had a Western Blot done at a junk lab, please still glance at the result. Why? Because you may find, as I did with one relative, that one of the antibodies or "bands" was positive. In this relative, the band was a "fingerprint" band. Meaning, Lyme is the only organism that makes the human body make this antibody. The child was positive.
Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant-perhaps this is a rhino? This is the 41 band. It is from the flagella, or huge stringy rod that projects from it. Very crudely, the flagellum looks a dash like a sperm tail on the Lyme organism and is most often positive. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.
Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. J's point. It you see an 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme--just like a tusk on an elephant.
What Do the Number of Pluses Mean?
IGeneX gives levels of antibodies. One + means you have some antibody of that type, and +++ means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.
Also, many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.
Many don't use his criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies, and in general the government is anti-progressive Lyme. They are years behind clinical medicine and following a few Ivy Tower types.
Many government agencies are attacking Lyme experts like the FDA and especially state medical boards. These lawyer run groups are attacking the best Lyme doctors in the USA. Generally, after the board takes out some of the best Lyme doctors in their state, patients counter attack the state boards and get laws passed to stop this 1984 Big Brother harassment. But these doctors are gone.
Further, this scares thousands of doctors into avoiding treating Lyme aggressively or makes simple thinking doctors feel these progressive doctors must have been wrong. Some physicians are simple in the politics of power.
We have seen the same state board abuse against physicians willing to take on a few desperately suffering chronic pain patients, e.g., the type with rotting joints who are inoperable and need rising doses of narcotics to work fulltime and keep from crying from pain. For example, Pennsylvania and New York are two of the leading anti-pain, anti-Lyme treatment and anti-doctor states in the USA.
Addendum
There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus 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 burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi 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 species-specific antibodies in a Lyme Western Blot, 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 a Borrelia burgdorferi induced Lyme disease.
The 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 species-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 species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 6000 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.
Dr. j again on symptoms in children:
In my experience treating 7,000+ children birth to 18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school.
They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child's life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.
Dr J in San Francisco 2005
Although Lyme is usually transmitted by Ixodes scapularis (deer) and Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems.
All respond to months or years of continuous antibiotic therapy.
love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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cantgiveupyet
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Member # 8165
posted
thanks Dilly, i never saw that posted before. very informative about the elephant analogy.
now i have a question, does anyone know what a syphilis test looks like, do they run a western blot? How do they determine if someone is positive.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks TuTu, Betty and Dilly, your unending support means so much to me. I truly don't know where I'd be without the strength you always seem to give me.
Cave- I love you too, but HUH?
Dilly, I'm really glad you posted this info because it was part of the reason I felt I needed to bring my daughter to Dr.J.
My husband has told me that he needs to better understand why I feel this is necessary before we go for the appointment. I feel that he is skeptical, as this is a very serious issue and he is very busy and would not have time to research this on his own.
I tend to have greater problems with my memory and organized thinking when I feel that I am under pressure. I know he loves me and our daughter very much, but I'm afraid of my tendency to panic when I'm afraid I won't be able to express what I'm thinking.
I only hope I can explain it to him in a way that will make sense. I would greatly appreciate any suggestions or links that anyone can offer to help me explain this to my hubby.
Thanks again everyone for all your much needed support!
Ali
-------------------- 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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Aniek
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posted
So, a little more on Dearborn. The NIH holds consensus conferences to attempt to establish a standard of care. Consensus conferences bring people together from across a field and they sit in a room and try to come up with the standard.
Of course, the conferences are political. According to my Health Law professor, there are often drug reps right outside the door of the meeting. We can all guess what other agendas by certain "scientists" and "doctors" were brought to the Dearborn Consensus.
The Dearborn Consensus supposedly based it's counting of bands on a study. However, that study only used 2 out of 5 IgG bands, while the Dearborn criteria required 5 out of 10. So kind of fishy.
I'm hoping to research this event more over the weekend for a paper I'm writing. I'll post if I discover more about the Dearborn process.
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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AliG
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Member # 9734
posted
Drat! I thought I posted a reply here. Where is it?
Has anyone seen a reply to Cave and Aniek in one of the other threads?
I expressed my gratitude along with about a mile of other stuff.
I'm going to see if I can find it, if not I'll do it over.
Phooey! Please know that I am eternally grateful !
I hope it's not lost
-------------------- 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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AliG
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Member # 9734
posted
Is there any possible way that anyone could help me find symptom lists for children, as well? I'll probably need to justify why I see the things I listed as symptoms, too.
Thanks, if you can! I have to run for now to do mother stuff.
-------------------- 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
Ali, Send me a private msg and i will give you a list of children's symptoms !!!
I also posted IGeneX's list of lab certifications....somewhere on here to someone else's post. Good for printing out to show to nay saying doctors and insurance companies!!!!!
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Ali-
somehow i just lost my post to you with a a bunch of symptoms links- cut and pasted from bookmarks one too many times with a fried brain. Maddening.
will try again later.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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5dana8
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Member # 7935
posted
Don't think this is a direct answer to your question but just thought I would throw this in here too...
I would think the same logic apply's when you only have a few bands light up. Please see link below:
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Now I really feel like crying!
I just did it again! This time too many Graemlins.
Cave- I think someone up there must be trying to keep your head from getting inflated or something.
Gail- I have to pm you anyway for info, so I'll repeat what I had said there.
Dilly- I dittoed my sentiments for cave, plus added how nice it was for you to go the extra mile and lose your hard work so you could keep me company in my frustration. Sorry the glitch got you too!
Dana- More great info for hubby! Thanks so much. This is really helpful as I have no idea how to try to condense for him all this info floating around in my head.
Thanks again all for your time and efforts! I really appreciate having you there for support. You're all truly great people!
Ali
-------------------- 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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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi Ali-
well, they say misery loves company; meanwhile I think we ditz-ed depend on that company to get through a day.
i forgot how soon you need relevant info. If not for a little bit, I can send you books on loan I have about lyme that might help- Lang's Coping with Lyme (?) is one, and it has a chapter on children with lyme.
you can send them back whenever they've served the purpose- let me know if that helps.
A chunk of the links I lost came from the results of a past 100 day search of "sympoms children" threads here on the board.
good info in the threads, and links to standard gems like Dr. Fallon's Under- something or other of Neuropsych lyme, which included case studies, including one with a differential diagnosis of ADHH vs. lyme in a child. Handy-dandy?
I'm sure you know why I've been compiling a bunch of this info for awhile -- so let me know if and when you're lookig for some specific thing.
Hugs- Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Dilly!
You truly are an ANGEL!
I posted this sooner, but I'll let you guess what happened...............AGAIN!
I had to walk away , but I think I'm better now.
I HAVE THE BOOK!!! I reread part of the chapter about children. (I remembered crying the first time I read it.) That's the source I was thinking of.
THANK YOU! THANK YOU! THANK YOU!
I immediately gave it to hubby to read (He still hasn't read it).
I had e-mailed him a bunch of links over a couple of days. I stressed the importance of the one's by Dr.F and Dr.P. I don't know if he's read any of them yet either.
I gave him a copy of DR.J's "Addendum Regarding Lyme Serology". I think he read that.
Thank you so much for your offer to lend me the book. That was sooooooo sweet of you! I'm really glad I don't need to borrow it. I'd be afraid it would get lost in my mess.
I lost my own copy because I put it in a safe place, where I walked past it every day, because I wanted to finish reading it. I completely forgot I had it. Thanks so much for reminding me!
The LDA also has 2 great brochures, Lyme{R}Primer, and ABC's of Lyme Disease. I'm thinking about ordering a bunch to distribute to Drs./Peds locally and to the school system.
I tried to check the link I had saved before I posted it here, that's how I lost my last reply (the link opened in the same window). If you want, I can PM you the link to order them.
Of course, I forgot to look for it again before starting this and don't want to lose this one too
Thanks again for all your help!
Ali
-------------------- 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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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi Ali-
funny that you lost your copy in plain sight for a long while!
i remembered off and on that that i had a copy, searched for it at least a dozen times over the past few months and couldn't find it til a week or so ago, when sure enough, there it was in a place I'd checked that many times.
See, I was thinking if I sent it to you, at least I would know where it was.
PS- we really are thinking along the same lines about educating about pediatric lyme. I don't remember whether or not I've mentioned this resource to you, but I found a spectacular link:
It spits the name of every pediatrician, pediatric social worker/psychologist, etc. in any town in any state, with complete contact info. Easy as pie, instant mailing list.
I have a huge amt on my plate right now with other lyme-stuff, but when some of that is squared away enough for me to look up, I'm following my heart back to where I wanted to start out- helping kids wih lyme, and trying to prevent others from ever having to suffer from this godawful disease.
'twould be grand to share notes with you along the way.
sending you a big 'ole gigantic hug back-
Dilly
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