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Round 2. Lyme Lab Testing

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Posted 7/23/2010 2:57 AM (GMT 0)
Round 2. Lyme Lab Testing

Please everyone no going to nuts on this one. (too nuts)

 

This thread may look like an argument to some, but it is really so people can see other opinions and question-answer some things that need addressed.

 

Please, you dont have to participate if you dont like it. You can choose not to read a thread or ignore it.

 

We had a real good conversation going on the last post.

 

Many members wanted to discuss more.

 

Posted 7/23/2010 3:00 AM (GMT 0)
Here we go.

I started looking into testing because I am sick myself.

I tested + 41 and + 31 on Igenex IGG.

Should I take anitbiotics now? I dont know. I think I need to find out if I really have Lyme 1st.

I think that Igenex and other test labs are hiding something.

Something does not makes sense.
Posted 7/23/2010 3:02 AM (GMT 0)
So what about 31 and 34

You guys tell me why should they be included in Lyme tests like Igenex does....

I will prove you wrong, give me your best shot..
Posted 7/23/2010 3:23 AM (GMT 0)
motox, I do not know what you are talking about here. If you have Bb species specific antibodies in your blood, then you have or have had a lyme infection. Lyme antibodies are not just floating around out there willie nillie. I'm not prepared to argue and I don't want to. I did not use Igenex. It seems your issue is w/ this lab, so in my opinion, you need to pursue this w/ this lab, not on this forum. And if you do so and learn something significant that is concrete and not based on opinion, then you should post it. Specifics, non-defensively, and facts, not theories.

At the same time, you will need to explain why the 'pop' labs are not testing lyme significant bands, and will not test them at anyone's request.  My LLMD is an infectiou disease Dr, who orders labs thru Quest, or whatever insurance will cover.  Still, I showed species specific antibodies, which added to the other lab results indicating a live infection, added to a low CD57, added to 2 strains of babesia, added to symptoms and reaction to abx.  And I am sick. I don't need an Igenex test.

That's my 50 cents.

Posted 7/23/2010 3:32 AM (GMT 0)
+Lyme

Here is my answer for you from me and the CDC  Barbara  Johnson...

about the 31 and 34.

'The bands at the 31 kDa and 34 kDa positions of immunoblots are

produced by outer surface proteins A and B, respectively (OspA and OspB).

Blot interpretation criteria that could

best discriminate Lyme disease patients from controls, therefore, did not include

scoring antibodies to Osps A or B. When bands at 31 or 34 kDa are observed,

they are virtually always in the context of a robust IgG response to a large

number of scored antigens.

Why is  OspA in particular is not scored

when it was the basis for an effective vaccine. People naturally think of the usual

way that vaccines work, neutralizing infection in a mammalian host, and expect a

vaccine antigen to be a good diagnostic antigen. They are unaware that the

OspA vaccine works by killing B. burgdorferi in vector ticks as they feed .

OspA is well-expressed by B. burgdorferi in unfed ticks and is a suitable target

for antibodies that enter a tick during a blood meal from an OspA-vaccinated

host. When ticks are exposed to a blood meal and the body temperature of a

mammal, B. burgdorferi stop expressing OspA . Another outer surface

protein, OspC, is expressed instead . Reciprocal expression of these two

Osps has been demonstrated at the level of single cells. It is not surprising,

therefore, that antibody responses to OspC are diagnostically useful in early

Lyme disease, but responses to OspA are lacking

Some claim that patients

should be judged seropositive based on finding immunoblot bands solely at the

31- or 34-kDa positions, even when their serum is negative by an ELISA that

uses whole cell antigens. However, B. burgdorferi grown in culture express Osps

A and B abundantly  and ELISAs made from cultured whole cells contain

these antigens. Thus, samples from patients who have antibodies to Osps A or

B will react in a whole cell lysate ELISA. When an ELISA is negative but an

immunoblot of the same sample is scored positive, it is probable that faint

immunoblot bands are being “over-read.”  '
Posted 7/23/2010 3:49 AM (GMT 0)
I just joined here but I am not new to Lyme.

The way I interpret Barbara Johnson's answer is that when bands 31 and 34 are observed, there are almost always other bands there, too. So it isn't necessary to include them in the diagnostic testing.

I don't think she is saying bands 31 and 34 are not meaningful, just that they aren't necessary to be tested because something else will be there if they are.

I watched her testimony at the IDSA hearing on Lyme and that was my interpretation of what she said there, too.

Am I wrong about this?

Apparently, IGeneX finds these bands even when there aren't others, resulting in more positives by their standards.

There is nothing clear about chronic Lyme treatment and testing. You will have to decide for yourself which way to go and deal with the consequences either way.
Posted 7/23/2010 3:49 AM (GMT 0)
Motox, you missed it here. I did not comment on bands 31, 41 or 34. Furthermore, I do not place my faith in the CDC. Their guidelines are outdated, so I'm assuming their research is, as well. The CDC is ignoring, denying and covering up the problems of this epidemic. I don't place my faith in the CDC. I place my faith in my Dr and my lab reports.
Posted 7/23/2010 4:04 AM (GMT 0)
+Lyme, what test did you have done?
Posted 7/23/2010 4:12 AM (GMT 0)
+Lyme you said

"motox, I do not know what you are talking about here. If you have Bb species specific antibodies in your blood, then you have or have had a lyme infection"

So yes you were talking about 31, because that was my question......... read the post and your answer

jkmom

you are right in a way. What the CDC means is that there is RARELY a 31 or 34 that ever pops up. If they do there are many many other bands involved, like all of them

Plus, 31 and 34 are only indicative of Lyme of Lab growth, they are not expressed in Humans.

So what she really means, is they mean nothing by themselfs or with other ones.

If you order a test from Igenex you will be + for Lyme with a 31 or 34.

As far as 41, do you know how many people who dont have lyme, would test postive for 41?

What do you think? I know that answer I am asking you guys
Posted 7/23/2010 4:22 AM (GMT 0)
If you really must know, I had a WB done thru Quest: positive according to my Drs but not the CDC (their guidelines make little sense) I had a CD57 score just below 50. NOt the lowest, but still low. I have also had 2 tests thru Quest showing positive for Babesia -- 2 different strains. Not many folks w/ acute - chronic Babesia who do not have lyme. My regular blood tests indicate an acive infection. I also tested positive for EBV, parvovirus, and HHV6.

I had a problem KNOWN tick bite and live and am active in an intensely populated deer area. So are my dogs. I won't list all my smptoms, but will tell you w / certainty, I have LYme disease (along w / babesia)

I do not believe that labs + symptoms always diagnose LYme.

More..... but am way too tired....
Posted 7/23/2010 4:49 AM (GMT 0)
I am not a scientist, but it seems to me she is saying Osp A and B are expressed in Lyme grown in labs and antigens to them are included in the ELISA test. Therefore, if someone has Osp A and B, it will show up on the ELISA test. It the ELISA test is negative and they show up on the WB, it is a false positive, in her opinion. But, if they do show up, in those "rare cases", it must mean something, IMO.

I just had a negative IGeneX test and only had band 18 and 41.

I don't think doctors who treat chronic Lyme believe band 41 is important. I believe it is included in the CDC bands that count.

I still have Lyme, even though my test was negative. I feel better on antibiotics. Or, if I don't have Lyme, I have something bacterial that responds well to Lyme treatment.

Probably everyone who treats chronic Lyme starts with the same questions you have. You can either try to treat as though you believe this whole thing and see what happens, or you can choose to not believe it. There are many people who don't believe it.

If you haven't read it, you should read "Cure Unknown" by Pamela Weintraub.
Posted 7/23/2010 5:17 AM (GMT 0)
Motox, the results and research that you cite is based on the early research of the Lyme, CT cases in the 1970's. This research was necessarily limited in scope (i.e., only applied to those with arthritic-dominant Lyme, not neuro-Lyme, because the initial cases had arthritic-dominant symptoms, and Rheumatology was the dominant field of expertise of the initial investigating physicians) and only applied to early lyme - there is no research proving whether or not bands 31 or 34 do NOT show up with chronic infection of humans. I urge you again to read "Cure Unknown" and "Ending Denial" - these books will enlighten you and answer many of your questions.

Remember, Lyme is first and foremost a clinical diagnosis - even the CDC agrees with this statement. Tests were developed for tracking purposes, not for diagnostic purposes. My opinion, based on reading "Cure Unknown," "Ending Denial," and the opinions of other LLMD's (online research), is that this is one reason that lab tests (from any lab) are more prone to false negatives than false positives.

Another thing to look at is getting sequential tests and observing if the positive bands have changed. This is also an indication of active Lyme infection, because the bug is constantly changing it's outer surface proteins and thus the immune system must constantly make new antibodies (IgM) when the infection is active. So perhaps one way for you to confirm a Lyme diagnosis would be to get a Lyme test done every so many weeks and see if there are changes in the bands that show positive.

IGeneX found band 39 on me before any other Lab did. It is my understanding that band 39 is one of the most significant bands and it alone is sufficient to diagnose Lyme. IGeneX also found band 18 positive on me...and more recent research also suggests that this is a very specific band to Lyme (meaning that this band is an indication of Lyme and nothing else). Band 18 on my IGeneX test was +++ (my strongest reading).

 I tried treatment for all the other things I was diagnosed with - Crohn's, Lupus, Fibromyalgia, "Depression," etc. etc. etc., and only got sicker and sicker and sicker and sicker and sicker and sicker (24 years of misdiagnosis and improper treatment, and getting sicker the entire time). Antibiotics are the only thing that have actually made some of my symptoms disappear or become less noticeable/severe (and symptoms return upon ceasing abx, so I know I'm not done with treatment yet).

I know in my heart that I have Lyme, regardeless of what the tests do or don't show. I've seen 4 Lyme-Literate practitioners and ALL of them have confirmed for me that I clinically have Lyme, and that the tests just support the diagnosis. This is so even though I have no memory of tick exposure or bull's eye rash. If anyone diagnosed with Lyme feels that they have been misdiagnosed, then they are certainly free to persue other options besides Lyme treatment.

Please do not take anything I've said as an attack on you or anyone else - it is not intended as such. I am trying to share information that is based on my own situation and research.

Posted 7/23/2010 5:09 PM (GMT 0)
I'm late to this discussion so this may have been brought up before re bands 31 and 34....? Here is a more recent paper than 1970s anyway, which does seem to indicate that bands 31 and 34 show up together in stage III Lyme. Please check out Ma et al 1992: www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf

Specifically, page 375, bottom of left hand column says: "As indicated by others (29), the antibodies against the 31- and 34-kDa proteins were rarely detected and, consequently, became less significant when compared with other protein bands in this study (Table 1). Furthermore, abundant 31- and 34-kDa proteins were not helpful in increasing the sensitivity of the ELISA (data not shown), since antibodies against these epitopes were seldom seen in our patient population. Some samples from normal or syphilitic groups recognized the 31- or 34-kDa band, but it seems that these two protein bands did not usually show up in tandem except in some patients with the late stage of Lyme borreliosis. Although the detection of antibodies against the 31- and 34-kDa proteins may not be crucial for the diagnosis in terms of sensitivity, these two proteins are very specific markers of late Lyme borreliosis when they are both present."

I really don't think that there should be animosity over this topic though....aren't we here to be supportive to one another since we are all suffering from the same disease?
Posted 7/23/2010 5:26 PM (GMT 0)
Hi everyone,

I'm sorry for my absence. I just wanted to let everyone know that I talked to Motox through email and gave him permission to post about this topic. I think that if we all just try to stay calm and respect one anothers opinion, that this could be a learning experience. I'd really appreciate us all trying to get along and not posting anything aggressive. Lets try to be patient. We may all learn something from this.

Thanks everyone for understanding.

P.S.- Please stay on topic.
Posted 7/23/2010 6:11 PM (GMT 0)
For whatever it's worth, bands 31 and 34 were the ones used to develop the experimental Lyme vaccines for humans.

Many people have gone on abx for 4 - 6 weeks, taken a couple weeks off from abx,  and retested.  The result many times is a positive test.

Antibody testing has limits - if only there were direct tests for the organism, but there's not.

Why not treat and see if you get a Herx reaction.  That's confirmation of Lyme, and worth far more than any test - or endless discussion of lyme labs and testing.  Sitting on the fence is just zapping your energy. 

Posted 7/23/2010 7:00 PM (GMT 0)
This might be helpful if you haven't been thru it before.  You've suffered a loss - and a  possible Lyme diagnosis has obviously been something of a shock.  It would be worth the time to read about the stages of grief:

http://changingminds.org/disciplines/change_management/kubler_ross/kubler_ross.htm

I've watched this topic for quite a while now.  It just comes across like you're stuck between immobllization and denial.  Have you gotten really angry about all of this yet?  If not - you will.

No one can talk you thru these stages - it's a journey you'll have to make.  It's more than pointless to try and talk someone out of denial - it's a personal experience, and different for everyone.

Posted 7/23/2010 7:10 PM (GMT 0)
Rich,

That is so, so true. I went through those same stages. It is almost like mourning the death of your old self. It took me a while to get through it all, then my daddy passed away and I felt like I was going through it all over again. Thank God for this forum. It really helped me alot. Venting helps.
Posted 7/24/2010 1:17 AM (GMT 0)
Rich,

Thanks for posting that. I think (despite dealing with Lyme for over 2 years) that I'm still trying to 'deal' with IT.

Brad
Posted 7/24/2010 5:22 AM (GMT 0)
It's late, but I just want to respond to Motox: When I said I did not know what you were talking about. I was referring to:

Here we go.

I started looking into testing because I am sick myself.

I tested + 41 and + 31 on Igenex IGG.

Should I take anitbiotics now? I dont know. I think I need to find out if I really have Lyme 1st.

I think that Igenex and other test labs are hiding something.

Something does not makes sense.

And, NO:

'+Lyme you said

"motox, I do not know what you are talking about here. (you made several statements) If you have Bb species specific antibodies in your blood, then you have or have had a lyme infection"

So yes you were talking about 31, because that was my question......... read the post and your answer'

Motox, I don't care HOW you took my answer or to what question, but NO, I am not referring to bands 31 OR 41. This is not a court of law or game in which you can trip me up or catch something. This is a blog. I am referring to species specific bands, NOT 31 or 41.

And if YOU will go thru ANY of my previous posts, you will see that I only refer to reactions on 'SPECIES SPECIFIC BANDS'. Like 39, for example.

And I specifially said, 'Motox, you missed it here. I did not comment on bands 31, 41 or 34'. People who only read or see what they want to read or see wear me out and are worth no more of my energy.

If you have positive 31 and 41 bands, then please see your Dr and stop throwing this crap at us. We already know what 31 and 41 mean (well, most of us....)

If you believe that you do not have Lyme, then go somewhere else and figure out what you have and do not take any of my comments out of context. I am a LYME BRAIN. Still, you should have been able to follow what I said. And I did not call 31 OR 41 SPECIE SPECIFIC BANDS.

There is not supposed to be conflict here, HOWEVER, I will not allow someone's statements about MY statements to be purposely misused and taken out of the context of the meaning in my post. This wears me out.....

FOR THE RECORD: I AM NOT CONSIDERING, ARGUING about, OR EVEN CARING about YOUR 31 AND 41 BANDS. NEVER SAID I DID.

WATCH OUT! I'M GOING LYME ON YOU!

Posted 7/24/2010 6:08 AM (GMT 0)
haha,

again, you guys were the ones complaing about how I was attacking you guys, Look at you!!!!!!!

Am I not allowed to state what I think.

The bottom line is that band 31 and 34 and NOT indicative in Human infection. Yes you have read this online that they are. But it is WRONG! They cant be.... Its impossible. In rare cases they can show up, but never alone. If you have 31 or 34 +, then you have to have a bunch of other ones +. 31 or 34 alone or with 41 is not indicative of Lyme.
Posted 7/24/2010 6:32 AM (GMT 0)
Motox,

Is it possible that a person who gets a tick bite, gets the bull's eye rash, and is never given any treatment, that they have a possibility of long-term/chronic infection?

Is it possible that this person may only show one positive band on a Lyme test?

Is it possible that this one band may only be band 41? Or only band 31?

The answer to all of the above is "Yes." Here's why:

When the immune system is beaten down, such as from long-term chronic infection (of any kind, not just Lyme does this), it is less able to generate antibodies. Therefore, it is entirely possible for someone to only have band 31, or only have band 41, or only have band 39, or only have band whatever, be the only positive band, and yet still have an active Lyme infection. The reason I say this is because of reading information in the books, "Cure Unknown" and "Ending Denial" as well as other sources (yes, they are all scientifically documented).
Posted 7/24/2010 2:00 PM (GMT 0)
Razzle, that is exactly what is going on with me. Due to Insurance issues, I can only have blood drawn at this time and sent to Lab Corp. I had previously tested positive through labs at Stonybrook and MDL, several times. At those times, I had been negative though Lab Corp.

However, I have been under treatment for 2+ years and I get random bands popping up. Never enough to be CDC positive and usually not the same bands each test (I see my llmd every 2 to 3 months). Yet when I was off almost all abx (again due to insurance issues) and then restarted them (at full-dose, I should have worked my way up), I herxed and herxed- that is proof enough for me.

Rich- I recently started therapy and in one of my first appt's the therapist asked me if I had ever grieved. Grieved??? I had never even thought about it that way. But yes, now I am realizing what I have lost- what I had hoped for in my marriage, for my kids, lost friendships, lost abilities, finances and lifestyles-- even just the ability to make plans in advance!
Since then I am trying to be more conscious of it. I hope that if I can grieve, I can accept and move on.
Posted 7/24/2010 3:37 PM (GMT 0)
what again??

where is this thread going? Motox.....is this true? you are referring to data from the SEVENTIES??? I must have read that wrong.

What goes on here that you getting under our skin???

Just joking. It hard to have this type conversation in a email thing because we don't see
the faces and don't hear the expression in the type.

this stuff makes me nauscious ...lab talk. I just can't wrap my head around it but I read it because I think I should atually KNOW something about labs and protiens and bands.

I have one question..

is any of this talking about bartonella?? It it possible that if we had a better handle on bartonella that people would get some relief. are these test proving only lyme?

is bartonella another whole thread ? is there an argument on bartonella testing?
Posted 7/24/2010 9:28 PM (GMT 0)
I personally have always questioned the Igenex Statement:

Infection with HSV,EBV and HSV and/or syphillis many give false + results.

I would say that is why we do stress that Lyme is a "clinical" diagnosis first and foremost.
Posted 7/26/2010 4:16 AM (GMT 0)
With a tick bite and the right area yes, but otherwise I dont agree, as we know Lyme mimics many other things. Its hard Lyme doesent have many distinctive features, besides the bite.

My issue is that if you go to the chiropractor with a sore neck, he is going to tell you, you have a neck misanlinment.
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