Topic: Got a copy of my actual Igenex "negative" results today.
AliG
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posted
Somehow, I was of the impression that there were no positive bands. I'm proof that we need to get the copies of the test results!!
I don't remember what 30, 39 & 66 are, but I know 23 & 41 and I don't buy that "IND" HooHah. There's a band it's just not our definition of "weak"? What is that nonsense?
IGM 23-25 IND (pos on Quest) 30 + 39 ++ 41 IND (pos on Quest) 66 +
IGG 41 IND 23 - (pos on Quest)
If I never posted it, My IGM was CDC pos at Quest! Yay me!! (That's a really sick thing to be happy about )
-------------------- 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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30: Possibly a variant of outer surface protein A.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
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canbravelyme
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You know, what I'm thinking is that IND would have more weight if bB were a bacteria that tested reliably positive for antibodies when the infection were active, and negative when the infection was resolved, or there was no exposure.
Maybe IND is a hangover from testing protocols for bacteria that behave more as they "should". It seems to me IND means that your poor little body is having a very hard time creating antibodies, but the bacteria is present.
BTW: I am not a doctor, or a biologist; I'm a musician which is about the art of stats, probabilities, and logic.
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"If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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AliG
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I was going to say :
YAY ME-E! YAY ME-E! I was so happy to get my badge of Lyme honor!
Then I read: band 30 common in EUROPEAN STRAIN and one Californian strain.
EUROPEAN! ACA??!!!! Can't I even do one thing that's not supposed to be FREAKING RARE?!?!
Why do I always have to be among the "different"?
They consider Babesia "rare", even reported me to the County Bd of Health, they did. (We all know that it's not so rare, they're just a little slow)
NOW THIS?!?!
ACA - What the heck do I do to prevent it anyone know????????
I wonder if this is why LLMD seems more concerned with my Lyme right now? I know he has another patient who has ACA. That's probably why he pelted me with SUPRAX! They're supposed to be "having success with it in Europe".
Agggghhhhhhhhhh! This started out so happy & now I think I need my mouse.
Thanks for the help guys!
As always, you are the greatest
Looks like I have some more research to do. I know nothing about ACA.
[ 24. August 2007, 10:54 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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AliG
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BTW- TuTu,
I couldn't agree more with your theory on the IND bands. Just look at the Quest, 2 of my Igenex INDs were Quest positive. They were there, the tech just needs new glasses.
-------------------- 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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That must have been what the weird rash on my toe was that I had a couple of times. I remember trying everything I could think of to get rid of it. It stayed for the longest time.
I CAN'T REMEMBER WHAT I DID???!!!!!
I think I rubbed raw garlic cloves on it, put desitin on it, maybe aloe?, Tea Tree oil, listerine, sprayed it with lysol, anti-fungal powder, scrubbed it with lavender/sugar/sea-salt/manuka honey scrub......
I don't know what, if anything I did, made it go away.
[ 24. August 2007, 10:56 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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sometimesdilly
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Ali-
whoa........
what did i miss and where that said band 30 possibly belongs to a european strain?
holy moley.
i told my llmd from the beginning that i might have been infected in Vienna or Prague, since i was over there just several weeks before we saw the bull's eye rash.
more info, please!!!!!!!!!
dilly
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AliG
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TuTu's link gave me this:
Posted elsewhere by long-time member "Sammi"
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
You have 30, too? It figures. Two lyme-green peas in a freakin pod.
-------------------- 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
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it kind of does figure somehow, doesn't it?
well, there isn't anyone else i'd rather be pea-ed in a pod with, chief sweetie.
thanks for the reply.
i've seen that list many times including the 30 as variant outer whatever line, but not the second part about it being european.
am sending you a quick PM about something else right now-
dilly
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AliG
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Thanks pea-pod pal!
me too
-------------------- 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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WAIT A MINUTE!!!!
IF band 30 is European and 39 is Bb specific, Does that mean I've got 2 FREAKING STRAINS?!!
-------------------- 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
I was positive on band 30 and I definately did not get it in Europe or California ... I got it in Ohio.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sometimesdilly
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i'm having a difficult time wrapping my brain around what exactly is meant by a european strand.
as someone else pointed out, maybe it is european in origin, but here for some time via immigrants, travellers, vectors, whatever?
is there any research that distinquishes between generations of Bb? as in, is the Bb of Europe 50 years ago or 25 years ago the same as today? have there been any identifiable genetic mutations? in terms of tx, does it matter if the european strain is old or of more recent vintage?
and, is there any research that explains why an outer surface protein or whatever would cause the european version to be especially virulent neurologically?
dilly
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AliG
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Hmmm, Ohio? So maybe the band 30 is not really indicative of the European strains? Or maybe they've immigrated?
B.afzelii and B.garinii are the two European strains.
One is ACA the other is Neuro. I don't recall which is which. Looked it up: Garinii is neuro If I do have a European strain it would have to be garinii! That would mean no ACA added to neuro? Unless the Babesia's causing the CNS stuff?
This definitely needs more research.
-------------------- 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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northstar
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Dilly,
There is a researcher in the southeast whose name is Clark. He did genetic testing of some ticks he found. Looked at the DNA.
There is some patterns of certain sequences within the DNA that are the same as a portion of the sequence of the European strains, but overall they were the North American strain.
So maybe it is like blue eyes....some people have them and others have brown.
Personally, I dont think the WB knowledge is good enough to be taken definitively. For example, one report said kda18 was unknown, and another said it was a strong bb marker.
There are so many strains of borrelia...and only a few have been named or isolated. There is just not enough science on them.
I think that was one of the criticisms of the studies done by the IDSA groupies, e.g. they only reflect the NorthEast variety. So how could they assume that that knowledge applies to ticks from the entire continent and geography.
North.
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AliG
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So maybe band 30 actually indicates a neurologically agressive tendancy?
sixgoofykids, did you have big-time CNS symptoms?
-------------------- 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
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thanks for the explanation, north. amd yes, for sure the science is sadly lacking; i just am completely unaware about the research related to band 30 and its significance.
i wonder if anyone here or anywhere at all has had blood sent to europe for Western blots to be done using whatever strains European labs use to test, AND with the same draw, had WB's done by igenex?
would that be meaningful, i wonder? and IS just 30 identified with european strands?
are there any north american bands that have been linked to different expressions of the disease? ie., primarily constitutional or primarily neurological?
dilly
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northstar
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A survey of kda 30 would be interesting.....joints only, joints and cns, and cns only. But many have joint problems initially, but continue treatment for cns symptoms. and groups are kda 30 and no kda 30. However, this group is not a normal sample, I am sure, of those receiving lyme treatment
N/.
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Michelle M
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quote:Originally posted by AliG: So maybe band 30 actually indicates a neurologically agressive tendancy?
I have not read much about band 30. I have, however, read that band 31 is indicative of later stage lyme and possibly CNS lyme.
I had 31+++. Only an "IND" on band 30. Undiagnosed for two years following bite.
No joint pain to this day, except for that due to the fact that people keep running into the back of my truck.
Michelle
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Michelle M
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Did you do this IGeneX recently, or at the very beginning alongside the Quest test, or what? That's a REAL positive test!!
Michelle
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AliG
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Both were recent-
IGenex: 5/1/2007
Quest: 5/22/2007
Maybe in the 3 wks the 23 & 41 got stronger?
I initially had just 23 IGM on Quest, then nothing. These tests were a year after the bites that propelled me into treatment.
-------------------- 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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Michelle M
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Ali, were these May tests AFTER treatment of significant length? I know you've been here longer than THAT!
Michelle
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AliG
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I was playing with ducks in April of 2006 (2 wks Amoxicillin ) Got a script for Doxy from duck in July? Went to LLMD in August of last year.
I've Txd Babs (Mepron/Zith 21 days) 9/2006? Waited to see if gone(Just Zith 1 Month)10/2006? Txd Babs again (Mepron/Zith 21 days) 11/2006? Started on Lyme (Doxy 200mg 1 month) 12/2006? ^ to cidal dosage- (Doxy 300mg-herxed 3 months)1-3/2007? (Babs titer was down to 32 in February)
I think I felt Babs coming back in March, when Herxs stopped. I was sure by May. LLMD ran IGenex along with Quest Babs again & put me on Doxy/Mepron for 2 months. The Babs Titer was coming up again.
After that he put me on Suprax 2 weeks. I got worse so back on Doxy for a month. Just started me on Amoxicillin 3000mg/day because he thinks my Sx are more Lyme now.
I think it's still Babs & Amoxi has no effect on Babs so It'll be interesting to see what happens to me. He could be right, he's impressed me before with his ability to differentiate symptoms. Then again, I think I was back in my "stupid" state and forgot half my sx so I wouldn't blame him.
Maybe the fact that we got Babs way down to almost gone was why I was able to make (or free up) some Lyme antibodies?
-------------------- 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
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Ali-
(i didn't know you had tested postive for babs- in this upside world that seems fortunate, since you know for sure you have it.)
since you brought up the band 30 thing, how would we feel about posting a poll here to see how much 30 or as Michelle suggested, 31 too line up with primarily neurological symptoms?
dilly
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AliG
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Thanks Dilly Sorry, Northstar
I really thought that was a GREAT IDEA!!!!
I think that would be tremendously interesting to find out. I don't know how that thought vacated my brain. I thought I replied but I guess maybe I confused myself too much trying to figure it all out or something.
Would one of you like to run with it? or should I try to set something up?
Did you have negative Babs tests, Dilly? If so, were you tested while there were different symptoms flaring?
I have another thread going where I'm trying to differentiate the Babs symptoms. I know Babs can cause more severity with the CNS 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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AliG
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I just realized you asked me to do it.
OK - here goes.
Can you guys help me keep up if I lag? I'm doing too many things at once and confusing myself right now.
Thanks Knew you would!
-------------------- 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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I'm thinking that my understanding here should be that while band 30 may be positive for Bb, it is also a commonly found band in the European strains?
-------------------- 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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Sixgoofykids,
Maybe your tick was imported from California. I'm curious, did you have band 25 positive and not 31 or 34?
DN127-Cl9-2 must be the California Strain. It looks like band 25 should be popular with it.
Characterization of Borrelia burgdorferi strains isolated from Ixodes pacificus ticks in California.Bissett ML, Hill W. Microbial Diseases Laboratory, California Department of Health Services, Berkeley 94704.
In a survey of 1,714 adult Ixodes pacificus ticks collected in northern California, 24 (1.4%) were found to be infected with spirochetes that reacted with an anti-Borrelia burgdorferi polyvalent conjugate in direct immunofluorescence tests.
Eleven isolates of B. burgdorferi from these ticks were characterized by monoclonal antibody, polyacrylamide gel electrophoresis, and Western blot (immunoblot) analyses.
Ten of the isolates had molecular and antigenic characteristics similar to those of other U.S. isolates.
One strain, cloned by limiting-dilution techniques, was different from any previously reported U.S. strain, but similar to reported European strains.
The cloned strain, DN127-Cl9-2, did not react with monoclonal antibodies to Osp A and Osp B major proteins found in most of the U.S. strains.
It exhibited an abundant protein with an apparent molecular weight of 25,000.
PMID: 3323225 [PubMed - indexed for MEDLINE]
From that I'd say you'd get no band 31 or 34 positives with that strain?
Does that 25000 molecular weight translate to band 25? Answered my own question, yes 25 Kda.
-------------------- 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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![[Roll Eyes]](rolleyes.gif)
I'm proof that we need to get the copies of the test results!!![[woohoo]](graemlins/woohoo.gif)
(That's a really sick thing to be happy about 
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![[Eek!]](eek.gif)
and one Californian strain.![[shake]](graemlins/shake.gif)
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![[confused]](graemlins/confused.gif)
![[dizzy]](graemlins/dizzy.gif)
That would mean no ACA added to neuro? Unless the Babesia's causing the CNS stuff?![[Mad]](mad.gif)
![[bonk]](graemlins/bonk.gif)
![[hi]](graemlins/hi.gif)
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