The question of Lyme-specific bands in Western blot

So the standard CDC tests for reactivity on these bands: IgM 24, 39 and 41 and IgG 18, 21, 28, 30, 39, 41, 45, 58, 66, and 93. As we know, the CDC recommends that two of the three IgM and five of the ten IgG bands show as positive before a Lyme diagnosis.

Online (on pro-ILADS/LLMD websites) there are many claims that some of these bands are specific for Borellia burgdorferi. These are 23-25, 28, 31, 34, 37, 39, 83 and 93 (http://www.anapsid.org/lyme/wb.html). From this claim we would conclude: if you have *any* of these bands show up in your Western blot, you have (or at least had) Lyme disease.

Now, I know that the denizens of Lymeland are not fans of the CDC and IDSA, but I find it hard to believe that these organizations could be that inept. If certain bands ONLY occur as a result of Bb, how could they claim that you need two of three IgM and five of ten IgG? It just doesn't make sense.

So I'm left to ask: what is the scientific evidence that some of the Western blot bands are uniquely specific to Bb? Does anybody know?

Going further, look at the IgeneX "double-starred" bands. These include 23-25, 31, 34, 39, 41 and 83-93. We know that 41 is definitely not specific to Bb. As for the others, according to Igenex you are positive if *two* of the double-starred bands are positive. Wait a second...if all the starred non-41 bands are considered specific to Bb, than why doesn't IgeneX claim that ONE band is enough for a positive diagnosis?

Lastly, several websites claim that band 18 is Lyme specific. If that is so, then why isn't it a double-starred band with IgeneX? I emailed them about this and never got a response.

Doug-You can call Igenex and they will answer your questions. Just keep in mind they are in California so they operate on PST.

Imo it's not that the CDC and/or IDSA are so inept (btw IDSA guidelines have been removed) it's more a money issue. If they make this simple or as it should be then insurance companies would be on the hook for our treatment. If you are old enough think back to the aids epidemic. Lyme is the current epidemic that is being denied. The longer they deny the longer they can get away with covering those who do not test positive under their archaic system. It's darn near criminal.

I used this site to understand my test results. lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html
I think she does an excellent job of explaining things. Read past the bands. There is a lot of good information there. She's also responded to a lot of questions that have been posted. I found reading those very informative.

I don't blame you for questioning the test criteria. It's mind boggling. And nothing ever has a straight answer.

Doug(y) Fresh (great rapper by the way I'm sure you lifted his name ;). I've read on several official web sites that in order to contract Lyme disease or any of its co-infections a tick would have to be attached for 36 hours and even then you had a 1-1.2% chance of contracting the disease. What a bunch of horse dung.

I was tested 3 times in the first 5 months after symptoms with ELISA and Western Blot and they all came back negative. That's because I didn't meet the 'criteria'. Well guess what I went to Igenex and bam there it was. The Igenex test was taken like 2 weeks after the last negative lyme tests through Quest or LabCorp.

There is enough evidence to assert that either the CDC/IDSA is at best neglecting the evidence or at worst being negligent.

I'm actually really curious about an answer to this as well. One thing about the CDC being a political organization is that there is endless protocol and structure to what they do and political considerations sometimes take precedence over public health. I imagine what kind of backlash, for example, would take place if borrelia bissettii and andersoni were included in the case definition of Lyme disease despite minimal research. Like a lot of the darkness in the human condition there is this terrible mix of conspiracy amplified through ignorance and legal obstacles and need for peer approval. Look at what happened to the IDSA. Ralph Stricker did an excellent paper documenting the process by which the IDSA duped a nation of doctors regarding the nature of chronic Lyme. It started with one man, Gary Wormser, who appointed only panelists who shared his views and presented their research as unequivocal. This isn't a conspiracy theory it was federally investigated and his paper has gov citations

But I really do hope someone has a scientific answer for this. I don't personally doubt it. I had a positive Elisa using purified borrelia proteins making it much more specific than the whole body lysate. I had NO bands reactive on my western blot. A year and a half later I have several bands. Seroconversion anyone? Would be kind of silly to think I acquired several viruses and bacteria that cross react in a short time span despite not encountering such microbes over the course of my life previously. Seems to me that these Lyme related bands popped up after an infection with an organism that has all the typical symptoms of Lyme (carditis, myalgia, arthritis, peripheral neuropathy, encephalitis). I also tested positive for ehrlichia and babesia despite having predominantly Lyme symptoms. You know what they say. If it walks like a duck and quacks like a duck... then it's probably not a duck and we need more research to free these loonies of their duck obsession

Post Edited (Psilociraptor) : 1/28/2017 5:46:16 AM (GMT-7)

julymorning said...
It's been said over and over here. Symptoms should carry the weight of the decision of infection. Even the CDC admits this.

That would be true if Lyme was responsible for relatively few, distinct symptoms. However, there are 1,001 symptoms that are attributed to infection by B. burdorferri (rightly or wrongly), and as such lab test results must be a critical part of any diagnosis.

http://www.lymeresearchalliance.org/signs-symptom-list.html

https://canlyme.com/lyme-basics/symptoms/

As much as the standard two-tiered Lyme testing is criticized, the vaunted LLMD clinical diagnosis is highly flawed as well.

LLMD: "Let's see here...you have headaches, swollen glands, and trouble sleeping...and I see here that you have band 39 as 'indeterminate' in your IGeneX results...guess what? You have Lyme disease! Time to start the antibiotics...and the supplements...and the herbs..."

Rikky1 said...
I was tested 3 times in the first 5 months after symptoms with ELISA and Western Blot and they all came back negative. That's because I didn't meet the 'criteria'. Well guess what I went to Igenex and bam there it was. The Igenex test was taken like 2 weeks after the last negative lyme tests through Quest or LabCorp.

I am curious what your Quest/LabCorp Western blot results were compared to your IGeneX results. Did your LLMD diagnose you because there were some "Lyme-specific" bands showing as positive in your IGeneX WB? If I recall correctly, IGeneX tests for the same IgG bands as Quest and LabCorp, with the exception of 31 and 34. Or did IGeneX identify certain bands as positive which Quest/LabCorp showed as negative?

Traveler said...
I have used this resource to learn about the bands reported on the Western Blot for quite a few years now, because it's the best I have found. It's based on the PubMed articles that have been located for each band - although it can get a little confusing as most of the articles are talking about more than one band in each article: :www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

That link is the first page I have seen in which some kind of evidence is provided as to why certain bands are Lyme-specific. I don't like how it hasn't been updated since 2001, but it's better than nothing. I'm going to read it carefully and follow the NIH.gov links.

Traveler said...
Everyone seems to have a different interpretation of what band is Lyme specific and what ones aren't.

And that's a major problem; in 2017 it's inexcusable.

Hey Doug. I agree, i think Lyme is overdiagnosed by some practitioners but it is so specifically because it is underdiagnosed by others. Both genuine practitioners and opportunists have flocked to treat a silent epidemic. I was told by medical professional when i first got sick and asked about lyme that "lyme doesn't exist in the south". This is just factually wrong. No matter how you spin it. There are plenty of published studies on borrelia infections in the south. We can try and get to the bottom of why this nonsense is perpetuated all day but that will only lead to speculation and few definitive answers. I recently pulled out my universities medical microbiology textbook and my symptoms were verbatim what they're teaching students these days. Not these 1001 diverse ones you talk about. Classic triad of arthritis, cardiac problems, and peripheral sensory neuropathy. I'm not aware of any other diseases with this exact presentation, and if there is Borreliosis is still by far the most common in North America that we know of. As i posted above however, i am CDC negative and technically Igenex negative though i started with no bands and a positive ELISA and many started showing up over a small period of time. And I respond dramatically to antibiotics. I have also tested positive for Ehrlichia and Babesia via IFA lending support as associated infections.

As far as insurance companies, like I said Stricker published a paper documenting the IDSA's misconduct regarding Lyme disease. Federal investigation found extensive conflicts of interests in the panelists. Again we can only speculate but part of what makes lyme so easy to dismiss is that it is so difficult to diagnose. One study on chimpanzees testing the persistence of borrelia after treatment had to utilize six different diagnostic approaches and in the end the only one that was accurate was IFA of autopsied tissues. Not exactly practical for live patients. Comparatively it is hard to pretend you cured someone of a tumor when visual images come back positive. Or pretend their heart attack doesn't exist with the advances in emergency medicine. I have an entire textbook about stealth pathogens in "idiopathic" diseases. It's something most of the scientific community is still very very bad at identifying. And so absence of evidence gets played down as evidence of absence and patients denied care.

Anyways whether someone has or doesn't have Lyme is less relevant than what Lyme is teaching us about chronic illness. Some call lyme the "second great imitator". A misconception as it's merely a window into the etiology of chronic illness. It's no shock that Lyme can manifest T and B cell lymphomas, autoimmune diseases, cardiovascular illnesses, etc when you actually understand how those illnesses work. All those 101 other serious diseases you refer to are being treated symptomatically so we can argue how serious they are about paying for treatment. Let's talk about all these people with autoimmune diseases that should be screened for a myriad of infections yet are only treated with Humira. Are their conditions really being "recognized" by insurance companies? Or just given barely enough validation to avoid litigation? So in the end does it really matter if one has Lyme or mycoplasma, pseudomonas, or whatever if they're responding to their antimicrobials? Then considering the realities of polymicrobial infections and nonspecific causes (different microorganisms that cause the same autoimmune disease) is there really any point in sitting around waiting for flawless diagnostics to come out on 5000 viruses and god knows how many bacteria, fungi, protozoa or should we start treating these illnesses as complex ecological disturbances which will never be solved in a linear cause and effect fashion?

That said i share some of your concerns regarding the quality of evidence used in the Lyme community sometimes. I have not been able to find a satisfactory answer to the questions regarding the specificity of Igenex bands myself. I hate when evidence gets "telephoned" with no link to the original source.

Traveler said...
Well, looking back at your last thread (www.healingwell.com/community/default.aspx?f=30&m=3680272) - I see that you also tested positive for band 39 - which is NOT controversial about it being Lyme specific. A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease.

So, are you questioning your results, or all testing?

I suppose I am questioning both. Let me explain why.

Yes, as you say I tested "indeterminate" for band 39 IgM with IGeneX. Regarding IgM bands the Mayo Clinic has this to say:

said...
IgM antibodies to Borrelia burgdorferi may be detectable within 1 to 2 weeks following the tick bite; they usually peak during the third to sixth week after disease onset, and then demonstrate a gradual decline over a period of months. IgM antibody may persist for months even though antimicrobial agents are given. The IgM assay is more likely to be useful during early disease, and should only be tested during the first 4 to 6 weeks after disease onset.

Now, my symptoms started in June 2015. IGeneX didn't receive my blood specimen until 14 months later in August 2016. At that time they found band 39 IgM indeterminate...but I can guarantee you that I was not bitten by any ticks following the onset of my symptoms in June. Regarding my IgG bands, IGeneX agreed with Quest that only 41 is present.

Regarding your claim that 39 is Lyme-specific and ""nothing else will turn a Lyme specific band positive other than Lyme disease", if that is true then why does even IGeneX consider WB results to be positive if two double-starred bands show as reactive? Why not just one?

Post Edited (DougFresh) : 1/29/2017 2:53:43 PM (GMT-7)

DougFresh said...

jrpsf said...
Imo it's not that the CDC and/or IDSA are so inept (btw IDSA guidelines have been removed) it's more a money issue. If they make this simple or as it should be then insurance companies would be on the hook for our treatment. If you are old enough think back to the aids epidemic. Lyme is the current epidemic that is being denied. The longer they deny the longer they can get away with covering those who do not test positive under their archaic system. It's darn near criminal.

I used this site to understand my test results. lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

I do recall the AIDS epidemic very well. However, it took place in the 80s and early 90s which was less than 10 years after AIDS/HIV was discovered in 1981. The medical establishment has known about Lyme disease for 40 years. AIDS will also unquestioningly kill people if untreated, but while Lyme can be debilitating and life-altering it is not deadly the way that HIV is.

And I am certainly not one to dismiss arguments as "conspiracy theories", but I'm having trouble not applying that label to your claim that "If they make this simple or as it should be then insurance companies would be on the hook for our treatment". If "the insurance companies" are in a conspiracy with the CDC/IDSA/etc not to recognize Lyme as the serious threat that many believe it to be, then why do those same companies recognize and pay for a myriad of other afflictions, many of which are more debilitating and deadly than Lyme is? In other words, why is Lyme being singled out and ignored by "the establishment", but 101 other serious diseases are not?

Regarding the Lyme With Rocks website, it appears that the author is simply repeating what she has read elsewhere on the Web in terms of Western blot bands and some of them being "specific" to B. burgdorferi infection. She claims that 22, 23-25, 28, 30, 31, 34, 35, 37, 39, and 83 are all Lyme-specific, but there are no sources in her article.

People didn't die of AIDS. They did from the effect that AIDS had on their body. They died of organ failure, heart failure, and so on.

Who's to say the same thing is or is not happening to patients with undetected Lyme. We know for a fact that without a heart transplant a Cardiologist would have died from the damage Lyme and co did to his heart.

We can try and convince you until we are blue. If you chose not to believe that's your decision.

Good luck to you in your quest for answers and health.

Well, I have a idea. But first this is how I feel. Lyme and its confections and symptoms are real. The testing is flawed, it is not consistent or reliable. The CDC and medical community cant seem to figure all this out. Meanwhile, we have an epidemic on our hands, people are not only suffering, but struggling and searching for answers. Not just here in the Northeastern USA, but world wide. I've decided its a plague of biblical proportions and yes, it just wrong that Lyme is not acknowledged like it should be.

This forum has 152,869 registered members and MORE joining everyday(It's just astounding to me, and breaks my heart for all that have had to come here seeking help). Thank God for this forum and for saving my sanity during my most desperate times of feeling lost and alone with this disease.

We need to work together and continue to offer each other an ear and support. It's human nature to have different questions, ideas or thoughts about all of this. I believe you all have such important information pertaining to Lyme, you all know so much that helps others.

So my simple idea.We need to draft a common letter/template voicing the most critical questions/facts/statement that we believe needs to be heard by the medical community/CDC/Govt./researchers etc. Then each individual can add a few of there own thoughts to their letter.
For different countries/states/provinces/islands you will have to find the proper groups/addresses to send it too. Here in the USA I would be sending it to The President, the CDC, my state Governor,reps and senators, AMA,and major research university's/institutions and any other medical associations.

We could triple the number of letters sent just by asking a family member of friend to send one too.
Once drafted, we could plan on a mailing deadline date so they can sent relatively close to the same time.
Thanks Sincerely, Jo

Just throwing in my $.02 here...

A WB is by definition a function of how well your immune system is. Lyme is immunosupressant. That is the contradiction right there. How do you base your diagnosis off of a test for antibody response for a disease that messes with your antibody response?

Also I don't see a whole lot of mention, low CD57 can also be a good indicator (from what I understand) especially if you are sitting on the border of a positive WB