IGG negative interpretations by ILADS vs. IDSA

[jason80]

IIRC, the CDC invokes that a positive-IGM is likely a false positive, if the retest shows that IGG remains negative.  

Can someone comment how does ILADS interpret this situation?  Is there any kind of standard guidelines by ILADS(notwithstanding the fact that the bloodwork is never really conclusive).  Confused....

[jason80]

bump. Thanks.

[Hope75]

I have no idea, but I would love to know since I'm IgM positive by CDC and IgG, not so much.

[cindy903]

I was tested by two separate labs -- Quest and LabCorp -- the results were identical!

iGm positive in two bands and positive on WB (well, who can trust it I guess).

They sent my results in to the CDC...Was that right?

[patsy10]

I can't answer this question either but it seems a positive is simply that, a positive test.  I'm not sure why the CDC would call it negative.

[Hope75]

Perhaps it has to do with the idea that IgG represents exposure and IgM represents recent infection.  In theory, one would think to have IgM pos. you would have to have been exposed, hence IgG, right?  But, from what I'm reading about these antibodies, this is not the case:

"IgM antibodies appear early in the course of an infection and usually reappear, to a less extent, after further exposure. IgM antibodies do not pass across the human placenta.

These two biological properties of IgM make it useful in the diagnosis of infectious diseases. Demonstrating IgM antibodies in a patient's serum indicates recent infection, or in a neonate's serum indicates intrauterine infection (e.g. congenital rubella)."

"IgG antibodies are predominately involved in the secondary antibody response, (the main antibody involved in primary response is IgM) which occurs approximately one month following antigen recognition, thus the presence of specific IgG generally corresponds to maturation of the antibody response."

But, this is off of Wikipedia, so why would the CDC think this?  I am googling and can see that IgG is the secondary response.  What if the infection stays active (IgM).  An immunologist would probably be a better source than Wikipedia, but its all I have right now:)

[skarey]

On my quest WB I only had IGG Reactives (but again this was only with Quest).  Would this then mean that I only have a past infection or could it represent that I have a current infection that I've had a LONG time?  

[jason80]

The following link has CDC guidlines, where it states that late-stage Lyme should have positive IGG. I'm not defending this, I'm trying to understand where ILADS stands on the issue of IGM positive with IGG negative in late-stage Lyme. Thx

http://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm

[Hope75]

An interesting article.  We need to be reading everything we can get our hands on.  I ordered my copy of "The Cure Unknown" on amazon yesterday (couldn't be found at the bookstore).  We have to be objective and be open-minded, just as we are asking the "naysayers" of chronic Lyme to do, or we are no better.  It can be confusing, but to get to the truth, or even close, we have to entertain all ideas.  With that said, I'm still newly diagnosed and trying to decide what the heck is going on.  Others on this forum are more seasoned in the Lyme controversy and have probably seen it all.  I'm one of those that has to see for myself.  It's my body, so who better to figure it out?  I just wish it were all more clearly defined.  

[JackieCalifornia]

w w w [dot] ilads [dot] org [fwd slash] lyme [underscore] disease [fwd slash] treatment [underscore] guidelines [underscore] summary [dot] html

Jason80 inquired about what ILADS makes of certain results.  The link above [you'll have to retype it to keep the medhelp robot from deleting part of it] takes you to a page in the ilads [dot] org website that leads in turn to other MD-oriented writings, which may give you some of the information you are looking for.

If you can't resconstruct the link, it on the ILADS [dot] org website.  I hope it's useful.  I'm well into treatment and showing excellent progress, so I'm not as much into parsing tests anymore -- sorry not to be more helpful.

[JackieCalifornia]

PS I just went to the ILADS site myself and poked around a bit -- there is a lot of information there -- hope it's helpful to you.

[jason80]

thx for sending link. I poked around a bit and happened to see this. This seems to suggest that for us North Americans that if one has elevated IgG, we're actually less likely to have Lyme. Am i reading this right?

OLIGLOCLONAL BANDS AND IGG INDEX — Looking for evidence of an intrathecal immune response may be helpful, but it is not specific. As a rule, oligoclonal bands and an elevated IgG index are not present in North American Lyme disease and their presence should suggest other diseases.

http://www.ilads.org/goldings.html

[JackieCalifornia]

The item you quote from is dated 2002 [so perhaps superceded in some way?  I don't know] and appears to me to be a commentary and discussion rather than a conclusion, but moreover appears to be of narrower indication than the single paragraph you quote above.  

Here is the section it comes from, titled Central Nervous System, followed by brief mention and description of 5 central nervous system (CNS) manifestations of neuroborreliosis, then followed by this following final catch-all section, the final subsection of which is what you quote [in other words, we're out on a limb to a branch and now to a twig without the context of the tree as a whole]:

[begin quote]
"ADDITIONAL CNS TESTING:
NEGATIVE TEST RESULTS DO NOT RULE OUT THE DIAGNOSIS OF NEUROBORRELIOSIS

"Confirmation by CSF CULTURE is seldom practical because the organism is very fastidious, present in small numbers, takes a long time to grow out, and may undergo changes to forms which cannot be cultured easily.

"CSF ANTIBODY TITERS may be present but are inconsistent and therefore their absence does not rule out CNS infection. The MRI is seldom abnormal and the findings, when present, are not specific for Lyme.

"CSF PCR (test for spirochetal DNA) is a useful tool, but at present, because the capture of DNA is inconsistent, a few questions still need to be addressed.

"OLIGLOCLONAL [sic] BANDS AND IGG INDEX — Looking for evidence of an intrathecal immune response may be helpful, but it is not specific. As a rule, oligoclonal bands and an elevated IgG index are not present in North American Lyme disease and their presence should suggest other diseases." [end quote]

Oligoclonal bands are defined elsewhere as 'small discrete bands in the gamma globulin region of the spinal fluid electrophoresis, indicating local central nervous system production of IgG; bands are frequently seen in patients with multiple sclerosis but can also be found in other diseases of the central nervous system including syphilis, sarcoidoisis and chronic inflammation or infection.'

I collect all this here to say that perhaps the section you focus on is meant to be a cautionary provision rather than an instructive one, in that (in the context of seeking evidence of neuroLyme infection in the central nervous system) don't expect too many bug footprints because (1) the Lyme bug is hard to find, is few in numbers, has a long reproduction cycle, and may go into a cystic form that is difficult to locate; (2) CNS fluid titers are inconsistent and so unreliable, as well as MRI being unreliable and (when reactive) is not specific to Lyme; (3) CNS PCR is not useful [at least in 2002] because results are inconsistent; and (4) looking for an immune response within the spinal canal [=intrathecal] is not specific to neuroborreliosis infection.

Then comes the statement you have focused on, that oligoclonal bands and elevated IgG, in addition to the other problems with their usefulness just described, aren't usually found in North American Lyme and usually means some other ailment.  That is an interesting statement, but it's stated as a throw away at the end of a long line of hedged statements about what cannot be deduced from examination of CNS fluid in trying to diagnose Lyme.  I read the whole section to say "don't rely on the CNS fluid to make a diagnosis of Lyme for a whole lot of reasons" and the followed by a catch-all to say "...and EVEN IF you find elevated IgG in the CNS fluid, it's probably something other than Lyme" --  tho I will grant you that the final statement is rather larger than one would expect from the earlier caveats.

Bottom line:  I don't know why the statement is made, but would take it heavily in the context of the whole article and the whole "don't rely on CNS fluid for Lyme diagnosis" theme, and the fact that 7 years have passed since it was written.  

Perhaps IgG in CNS fluid expresses differently than IgG in blood serum, since blood is what is commonly used to diagnose and track Lyme infections.

I have wondered as I read through people's comments in this website/forum thing about how many of their doctors do one or repeated spinal taps, since it seems CNS fluid is NOT a good place to see if there are Lyme bugs.  As you say, perhaps it's to rule out other conditions, but given how nonspecific are the symptoms of other conditions in the differential diagnosis for Lyme, why not check for Lyme FIRST (since it can be located in tests), and if that isn't likely, THEN go to the other possible ailments such as Chronic Fatigue (for which not much shows up on any test, as far as I know).  Like so much of what happens with Lyme, it all seems to be done BACKWARDS.  As lousy as the Lyme tests are, they are better than tests for other conditions that are diagnosed by exclusion, like CFS, MS, and so on.

So I have rambled here, and understand your focus on that one line in an effort to figure out why it's said that way.  Short answer:  I don't know!  I admire your efforts to figure this out logically, but we are in Alice in Wonderland-ville with Lyme, with politics piled on top of scientific inexactitude.  I don't know that you will in the next decade get anything for Lyme as precise as a swab test for strep throat.   But if you do, be sure to let us know .....

[jason80]

Thanks for taking time out to read this more carefully and present you interpretation. I think it is correct. There is a lot of stuff written that doesn't shed much light in how to address IDSA's interpretation of the IGG.

I'm personally amazed by this because I think a lot of us (based on IDs I've seen and numerous people reporting their blood work) are IGM postive and IGG negative and the IDs rule that we're CDC negative.

Given that the bloodwork isn't much good to begin with, I'm willing to accept the over-arching conclusion that in the end even if ILADs (or IDSA) does give clear guidance that we shouldn't believe it any more than we believe the bloodwork.  It just surprises me because there is a lot of hypotheses generated about Lyme in so many ways.

In conclusion, if one of ILAD's main goals is to challenge the veracity of the CDC criteria, that needs positive IGM then I think there would be a lot more stuff out there and more definitive said about it.

As an aside, what do other's LLMDs say about it. My LLMD believes that the probability of having Lyme is greater if one has IGG positive (consistent with CDC) but of course, much looser in the criteria.

[JackieCalifornia]

Honestly, I haven't spent much time thinking about this issue, because I got a mildly positive Lyme test from an endocrinologist and took it from there to an LLMD, who remains my doctor now.  Looking back on it, I think I got Lyme in 2004, and then got reinfected in 2006 along with a bangin' case of babesiosis which finally made me take it seriously, so my IgGs and IgMs were probably all over the place anyway.  I'm probably not the only one in that situation, esp for those who live in endemic areas.  I take the tests as general indicators of what's going on in my body, not atomic-clock precise results.  I wouldn't expect levels of antibodies to be steady state anyway:  they rise and fall with the action of my immune system in response to the forays of the bugs out of their hiding places in my body.

The little pluses and minuses and INDs on the test results seem to move around at will, and I don't worry about them a whole lot:  I get better when on meds, and would have been on the meds consistently but for a reaction I've had to different medications.  I'm now 2 months off abx, and boy am I turning into a turnip mentally.  I'm about to go back on meds, but have delayed due to a project I have to get done.  The question is:  what's worse -- being Lyme-stupid, or Herxing?  Hard to tell at this point.  "Clinical diagnosis, informed by imprecise test results."

[JackieCalifornia]

and PS, I have noticed over time several references to statements by various LLMDs that some strains of Bb don't show up on certain tests -- I think someone here said Crist in Springfield MO says that about a midwestern strain, but I may remember incorrectly.

That doesn't suprise me, because after all, creating a test to locate and define something that is not fully knows and then having no secret envelope with the real answer it makes it all a dance with a shadow.  Bb don't ask our permission to mutate, and don't let us know that our tests are only picking up some of their cousins but not all.

We are, friends, on the cutting edge of science and medicine, like it or not.  BUT WE WILL WIN.

[patsy10]

The midwest strain causes a form of lyme-like illness called Master's disease and supposedly does not show up on any kind of testing from what I have read on it.  The LLMD I saw told me there  was a possibility that I had this strain.  

Jason, it's interesting how different doctors feel different results are important.  The LLMD I saw did not even order the IgG.  He only ordered IgM.  He was only interested in that portion of the test.  

[jason80]

I can see the arguments for why IgG might not be that helpful and why there is a looser criteria used by ILADS. It still seems very natural that the odds of being positive are higher if one is also positive for IgG, than not -- even if it is an overly simplistic view.  Interesting.

[JackieCalifornia]

Not everyone gets so sick right away that they get tested and will have just an IgM response ... there are a bunch of people here who have been sick a long time and might not manifest an IgM but would an IgG.  Given how imprecise the test is, why not test for both?

[jason80]

Can others comment on how much weight your LLMD placed on IgG of WB?

p.s. For $100? and given the inaccuracy that Jackie mentioned, I am surprised that doctors wouldn't advise both, particularly when if one does show positive, then they could be CDC positive which has more favorable treatment options.

[Amyloo]

Also, sometimes the immune system is just so tired or worn out, it simply cannot produce some antibodies.  Doesn't mean the bacteria isn't there to fight, just that the immune system may not be able to produce the antibodies either at all, or at that specific time.  This is what I have understood as far as the IGg.

[JackieCalifornia]

I think it's all the folklore about Lyme that makes doctors mistrust Igenex, refuse to run tests, and parse in silly ways the precise moment in time that a positive IgM would be joined by a positive IgG.

Willful blindness by the medical profession, imho.  Sorry, gang, I'm just feeling cranky today about the whole situation.  For anything else, an MD will test for a boatload of stuff to cast a wide net for diagnosis, but no way when it comes to Lyme.  The situation does not do honor to wide swaths of the medical profession.  Even the CDC says this is the most common vector-borne disease in the US.  Color me annoyed.  Delay results in entrenchment of the disease and destruction of daily life. This isn't right.  'First, do no harm.'

End of rant.  I'll go sulk somewhere else now.  Y'all have a fine Friday and a restful weekend.

[Freethinker]

The testing that the IDSA/CDC/FDA uses was monkeyed with at the FDA and Dearborn Conferences held in 1994.

Since then hardly no one will test CDC postitive on the EIA (ELISA) test, which is 40+ years old. The EIA being the first of the 2-tiered criteria they use, is used to screen out all the cases of neurological lyme.

Bottom line: They do not want to pay for our treatment, and this is the way they came up with the farce to screen out millions of people around the world.

BIGpharma + BIGinsurance = no treatment

They make more $ off us being sick for longer.

If you don't believe me, go look at http://www.lymecryme.com

[Nanasay]

my result is hep B IgG core antibodies- Positive
                  hep B IgM core antibodies-Negative
Can some body help with the intepretation?
Thanks

[patsy10]

Did you have the vaccine?  IgG is past exposure.

[Chatterbox58]

Patsy, what do you mean by vaccine? I was tested negative for IGg with a reactive band and tested positive for Igm with two reactive bands.  Does this mean I had a previous infection and a current one also?

[patsy10]

Sorry, I meant that message to Nanasay who asked about IgG, IgM results related to hepatitis B.

IMO it sounds like you have a current or active infection in regards to lyme.

[Chatterbox58]

oh ok, thanks.

I just received a new set of blood work results, everything is negative...what exactly now does this mean...the lyme is gone.  I am currently reading Pamela's Cure Unknown book, very good!!! I am reading that the Borreli does go dormant and return.  Is this what you thoughts are?  Any help would be grateful.
Thanks

[patsy10]

Can you list your results?  I can tell you that I had the bullseye rash but have never tested positive for lyme.  I also respond very well to antibiotics.  I was in remission for 7 years and it came back after having surgery.  So I don't rely on test results very much.

[Chatterbox58]

Patsy, I haven't received a copy yet, but I'll get back to you.  I had the rash, took the doxy helped me right after I took it...approx six months later got another rash, stiff neck, hand tingling.  Now today I woke up and had a weird funny feeling in my leg.  When I walked it was like something separating, an electric current feeling, I have never had this before.  This really scared me, I am better now.  All I know is that the blood work came back ok.  Oh by the way I am reading Pamela's book now, Cure Unknown..Very good book!!! Yes, I am in agreement with you, I am not putting much stock in these results after reading this book.  This is terrible...I never have been to an LLMD, don't know if I need to, have you been to one?

[patsy10]

Yes I have beento a LLMD.

Was your second rash a bullseye?  If so then it sounds like you were bitten again.  I've had lots of rashes since the first one but the other rashes have not been bullseyes.

[Chatterbox58]

No, the rash was not a bullseye, why did I get a second rash along with the severe neck pain, which sent me to a rheumi for MRI on neck and brain...white matter only.  I still haven't picked up my second set of blood work.  If it came back negative will it still have the bands listed like my first set that was positive?
Thanks

[Gaucho25]

hey guys, im confused... I was reading about the hepatitis IgG IgM thing... im trying to relate what does lyme have to do with hepatitis though... If your bloodwork comes normal (no hep antibodies) that means you can still have Lyme, right? it is not a correlation I suppose (Lyme-hepatitis)... confused!

[JackieCalifornia]

I am not medically trained, but I understand that IgG and IgM stand for two of the immunoglobulins that people's immune systems produce when challenged by a disease/invader.  There are other immunoglobulins, but IgG and IgM are produced in response to a variety of bacteria, viruses, etc., and there is no link necessarily between those bacteria, viruses etc.

Lyme and hepatitis are two different diseases, but the body's response to them is measured by the levels of the same factors in the immune system.  (A parallel example:  If we used a ruler to measure how tall you are and how tall a tree is, both readings will be in feet and inches, but it doesn't mean you and the tree are in any way related.)

Somebody feel free to correct or clarify if I have this wrong.

[patsy10]

The bands should be on there.  The rash could have been totally unrelated.  It's hard to say.  I get all kinds of rashes.

Gaucho25.  The two are unrelated.  If you read through the thread someone asked about hep B test results.  The question was not related to lyme but I responded to it.  I think it confused people.

[Chatterbox58]

Ok, thanks, I need to pick up that bloodwork then.  I assumed because it came back negative, there would be no bands listed.  I'll need to check on that.  The rash was identical to my first rash, that erthmgran rash, spelling incorrect..sorry.  I took pictures of it and went to my rheumi Dr.  She said if I get another rash they want to take a biopsy.  The rash was approx a month before my severe neck pain, had MRI's on neck and brain, shows white matter in brain.  They don't seem to be concerned about it. I had to go to therapy for two months for my neck pain.  Much better now.

[Chatterbox58]

Patsy, I just read on another site, you can get a rash from herxing.  I am wondering now if that rash was from it.  I developed the rash probably three months after treatment.  What are your thoughts?
Thanks
Chatter

[patsy10]

It sounds like maybe you were bitten again.  I have had numerous, bizarre rashes since the EM but none looked like the bullseye.  I do think you can get a rash from herxing.

[Hope75]

I think I got a rash from herxing, but it wasn't like a bullseye...

[Chatterbox58]

Patsy, that's what I thought also, but what's the odds of that happening, a year apart...lol I suppose it could.  The rash size was like 2 x 2 and just plain red.  Hmm but now I am wondering since I did have the extreme neck pain maybe it was another bite.  Great, because this is the time of year that I had both rashes, hope it doesn't happen again to me.
Thanks again everyone!!!