ELISA & Western Blot Tests for Dummies

Testing is such a difficult aspect of getting a proper diagnosis for Lyme Disease. I was diagnosed (and properly tested) by an LLMD over four years ago and still haven't fully figured out the tests, how they work and what exactly the problems are. Obviously I understand everything well enough to be able to logically explain the problems with other non-medical types, but if you ask me specific questions, well, I probably wouldn't have specific answers. So I'm on a mission to better understand these tests.

I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!

"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine.  The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.

ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."

"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.

Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."

The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages:    http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

 

The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.

Celebrities Get Lyme Disease, Too

Lyme Disease does not discriminate. This disease is a bacterial infection that can be spread by an insect bite, among other modes of transmission. Unlike other prevalent illnesses, factors such as lifestyle, age, economic or social class, family history and lack of "at-risk behaviors" can not keep anyone safe from this disease. Many celebrities battle Lyme Disease, although I suspect there are many more out there that do not want to make their battle public because of the controversial nature of the illness. Probably still more have been misdiagnosed, just as with all us lowly peons in the general population. Here are a few celebrities that we know about:

1) The 2007 Annual Report on the President's Health revealed that former President George W. Bush had been treated for Lyme Disease in August 2006 after the appearance of a classic bulls-eye rash. It is believed that the President was likely bitten on a bike ride.

2) Former World No. 1 and three-time Grand-Slam Champion, Jennifer Capriati revealed in January 2013 that she has been suffering with Lyme Disease since she had to quit tennis due to injuries over a decade ago.

3) Daryl Hall of the classic "Hall & Oates" was forced to cancel appearances when he was diagnosed in 2005 after having a bulls-eye rash and flu-like symptoms.

4) Actor Alec Baldwin has reported having Chronic Lyme Disease and told the New York Times that his symptoms return annually.

5) Actress Parker Posey (from the movie "Best in Show" among others) used both antibiotics and holistic supplements in her battle with Lyme Disease in 2009.

6) Author Amy Tan (The Joy Luck Club) experienced hallucinations, insomnia, confusion, neck & joint pain and numbness while she spent over $50,000 and saw 11 different doctors trying to find out what was wrong with her body. She eventually found out about Lyme Disease while searching her symptoms on the internet. She was treated by an LLMD and has since started a charity, Lyme Aid4Kids, in the hopes of raising awareness of this disease.

7) Jamie Lynn Sigler (of the Sopranos) contracted the illness in 2000. She first noticed that her feet had become "tingly," but eventually her legs became paralyzed. She made a full recovery with antibiotic treatment.

8) Pulitzer Prize winning novelist and poet Alice Walker self diagnosed herself with Lyme Disease after a fruitless search with doctors. She later described the disease as "physically debilitating."

9) Yolanda Foster (of The Real Housewives of Beverly Hills) shocked her fans in early December 2012 when she tweeted out that she had been diagnosed with Chronic Lyme Disease and was getting a port so she could begin antibiotic treatment. She is currently not sure whether she will be able to participate in this next season when taping resumes in April.

 

Good for Yolanda Foster, for making her battle with Lyme Disease so public! I hope that any and all celebrities who might themselves be battling Lyme Disease will follow her lead in coming forward and helping to bring awareness to this growing epidemic.

Dr. Phil Tackles the Great Lyme Debate

UPDATE: For some reason, when I first posted this, I only included two of the three clips of the segment. I have since found a complete clip, and I'm updating here for accuracy. Sorry about the confusion. I'll blame it on Lyme brain. ;)

 

Last year, the Dr. Phil show did a segment on Lyme Disease. It's interesting to watch. The entire segment is 18 minutes long. The third clip is the "after show" with Dr. Phil and his staff discussing how it had gone. 

 

 

I am heartened to see that America is starting to talk about Lyme Disease. Aside from all the controversy and political drama, Dr. Phil probably had motivation to do this segment because one of his Senior Producers, whom he has worked with since the beginning of the show, contracted Lyme Disease, and having known her a long time, he saw how it affected her over several years, along with her difficulty in getting diagnosed and properly treated.

 

An up-close-and-personal example is very effective in illustrating the seriousness of this illness. Unfortunately, I think that's probably the only way this disease is going to continue to come out of the shadows and into the full light of day -- eventually getting the awareness, funding, research and public safety campaigns that it warrants and rightfully deserves. I believe the Lyme Literate Doctors - whose practices are overflowing with patients that have been debilitated by an epidemic that is being ignored - when they say that Lyme Disease is the next big epidemic after AIDS. How many people are going to have to get sick before public outcry reaches a level that will bring about the change we need?

 

Dr. Phil's observation during the after show might just sum it all up: "Well, I thought we missed a big element, just because of time. And that is the political/financial/insurance aspect that impacts diagnosis. Because, if the bill payers can decide this stops at 30 days -- this disease doesn't exist after 30 days -- they save billions of dollars. There's a conflict of interest where you, you've got people that are lobbying to pigeon hole something, and they've got a vested interest in the outcome of that debate." Well said, Dr. Phil. Well said.

 

If I've piqued your interest or curiosity, you can read more about the great debate in my recent post: Why the Lyme Controversy?

Lyme Disease Article in Great Falls Tribune

There was a great article in the Great Falls Tribune this week on Lyme Disease. You can read it here. Great Falls is a city in Montana, nestled in a part of the country that's not supposed to have Lyme Disease. I thought the article does a great job of laying out the facts about Lyme Disease and the many controversies surrounding it. It's worth the read if you or someone you know has been affected by Lyme Disease.

The History of Lyme

While we tend to think of Lyme as a relatively new disease, it has actually been written about in European medical journals since 1883, when it was first described by a German physician. The characteristic "bulls-eye" rash, (which is probably the most widely-known symptom of Lyme Disease) was first documented by a Swedish physician, Arvid Afzelius, in 1909. And in 1921, the first medical reports linking swelling and joint pain with what is now known as Lyme Disease were published, at the same time speculating that ticks may be responsible for transmitting the illness. Evidence was found throughout the 20's and 30's drawing connections between the disease and joint, neurological, heart and psychiatric problems.

In the United States, Lyme appeared on the medical map with the first cases originating in the mid-1970's in a small town in New England called Lyme, Connecticut. At first, there were 39 children and 12 adults from this area that were diagnosed with what was then called "Lyme arthritis," a mysterious swelling & joint pain in the knees, generally accompanied by headaches. When a local Mother, Polly Murray, noticed that many children in the neighborhood seemed to be having the same symptoms as those going on in her home, she contacted the local health department. And thus we have the formal recorded beginnings of Lyme Disease in the United States.

In 1978, a researcher from Yale University, Dr. Allen Steere, suspected that the symptoms these patients were having were somehow related to tick bites. In 1982, while investigating an outbreak of Rocky Mountain Spotted Fever, Dr. Willy Burgdorfer discovered the actual bacteria, a spirochete that would be given his name, (Borellia Burgdorferi) that causes Lyme Disease. His research was able to prove that it wasn't the bite itself that was causing the symptoms, rather the presence of the Bb bacteria that was transmitted to humans when tick bites occurred. His important research was also able to link many of the infections that we now know as co-infections to tick bites as well.

GlaxoSmithKline came out with the first approved Lyme vaccine, LYMErix in the late 1990's. Although after much controversy, including lawsuits brought by claimants who had never had Lyme symptoms until after having the vaccine, it was pulled from the market. GSK cited poor sales as the reason for pulling the vaccine. After immunization many formerly healthy individuals developed what was referred to as "autoimmune" arthritis, and mysteriously also developed other symptoms of Lyme Disease. There is currently no Lyme vaccination available and I would recommend a great deal of caution if one is approved in the future. On a personal note, given the nature of spirochetes, I would be totally against ever allowing anyone to inject me or a family member with anything referred to as a Lyme vaccine!

The Infectious Disease Society of America came out with it's current Treatment Guidelines for Lyme Disease in 2006. The guidelines have added to the controversy by making it more difficult for doctors to diagnose and treat Lyme patients. The guidelines basically state that Lyme Disease can be treated effectively with 2-4 weeks of antibiotics, but that anything beyond 28 days provides no additional benefit to the patient, and in fact can be detrimental. The International Lyme and Associated Disease Society have come out with their own Treatment Guidelines for Lyme Disease which have taken into consideration the world-wide body of literature provided by physicians that are successfully treating patients with Lyme Disease, using combination antibiotic therapy, or long-term antibiotic therapy. The divide over Lyme Disease in the medical community continues to grow. Patients are caught in the middle, and are the big losers at the present moment, since many have to search for months, sometimes years, and in many cases travel out-of-state to find a doctor willing to treat them.

In 2008, Open Eye Pictures released it's Lyme Disease documentary, Under Our Skin, hugely successful at film festivals around the country. Since then, public and private showings have been raising awareness. Many Lyme patients and advocates have taken to the internet in an effort to spread awareness and aid in prevention as well. As the debate rages on, the history of Lyme Disease is still being written. There is still so much to be learned, so much that we desperately need to know about this debilitating illness. For more information on the great Lyme debate, check out Why the Lyme Controversy? a post from earlier this month that includes videos and other articles discussing the controversy.

The Lyme Lie...Not Just in the U.S.

It's amazing to me that the Lyme controversy is going on all over the world...WHAT IS GOING ON?

 

Why the Lyme Controversy?

There could be an entire blog devoted entirely just to this subject, but I'm going to be lazy and give you my take on it, then just link to some of the best explanations of it that we've found over the last five years. So here goes: It's a very complex discussion, but what it all boils down to is that the medical community is divided over whether or not, once a person has been infected with Lyme Disease, and then treated with 2 to 4 weeks of antibiotics, it can still exist in the body as an active infection. Some doctors are absolutely adamant that it can't; some are absolutely adamant that it can. So the 64-BILLION-Dollar question is: Does Chronic Lyme Disease exist? Obviously, as someone that's been dealing with it for the past 10 years, YES. I believe it does exist.

But it's not as simple as that little question. What started with this basic debate, has grown into an all-out war, where the doctors that are actually successfully treating patients for Chronic Lyme Disease are being ostracized, picked-on, and punished, and in some cases, such as the case of Dr. Joseph Jemsek of North Carolina, they are not only losing their licenses but also their livelihood. Dr. Jemsek lost his license to practice and was then sued by BCBS for 100 Million Dollars, following which he had to declare bankruptcy. You can read his closing remarks to the NC Medical Board, just before they pulled his license for treating Chronic Lyme Disease, here. His story is detailed in the Lyme Documentary Under Our Skin. It all sounds absolutely crazy, but it really is happening. The important thing to remember in all this maelstrom of arguing, egos and money, is that there are patients involved. REAL PEOPLE with REAL PAIN, and very REAL ILLNESS that are being overlooked, ignored and downright discriminated against.

I was diagnosed with Lyme Disease in January of 2009, and I have positive blood tests to prove it. I spent six weeks in New England in 2003 and got home to a large red rash (non-bullseye) that appeared three days after returning from Boston. After five and a half years of mysterious symptoms and continuously declining health, I finally found a doctor who would help me. After undergoing almost two years of combination antibiotic therapy, I began to feel that I was getting my health back. Even though you would think I have a believable case of what is called late disseminated Lyme Disease, living in Utah has made it next to impossible to find an LLMD, or any doctor somewhat knowledgeable about Lyme. Doctors don't believe that Lyme exists in Utah, and apparently must also believe that if you are currently living in Utah that means you've never been anywhere else. If it didn't have such huge implications for my life, it would almost be hilariously funny. Almost.

When I became pregnant we had concerns about my lingering bouts with severe fatigue (my most debilitating symptom thus far) and also the possibilities and implications of Lyme Disease for our baby. My husband and I just wanted to find a doctor that could be at least sympathetic to what we were dealing with. But upon trying to look for an OB-GYN that was at least aware of Lyme Disease (we weren't looking for someone to treat Lyme Disease, we just wanted a doctor that was aware of it) we were informed by a family friend who is also a Nurse Practitioner, NOT to tell anyone that I had Lyme Disease or nobody would take me on as a patient. Um, excuse me....WHAT?!?

This is the REALITY that those of us with Lyme Disease, no matter where we're at on our journey with it, are faced with everyday. How can I have an illness that I live with every day, that affects my life, my family, my ability SO much, and have to HIDE it from my medical doctor in order to have the privilege of being seen as a patient? How can this situation happen in this country, where we are supposed to have the BEST -- albeit flawed and expensive -- but the BEST medical care in the world? This is one of the reasons that dealing with Lyme Disease is so difficult and so isolating. In addition to your serious physical ailments, you've also got to worry about trying to find a doctor who will treat you. In order to get treatment four years ago, I traveled from Salt Lake City, Utah to Seattle, Washington every 8 weeks to see an LLMD, a Lyme Literate Medical Doctor.

It's very difficult to begin to explain the nitty-gritty nuts and bolts of the situation, but we've found a few articles that do a pretty good job. Here are a couple of them:
http://www.columbia-lyme.org/patients/controversies.html
http://www.jemsekspecialty.com/twostandards.php

I also found this series of news stories from Lynchburg, VA on it, and thought the reporter did a good job of laying it out in a pretty clear, concise way. Again, it's not a subject that can be completely and effectively communicated in one sit down conversation, but this does a good job of scratching the surface. Each of the clips is only a couple minutes long:

The Lyme Controversy Part I:

 

The Lyme Controversy Part II:

 

The Lyme Controversy Part III:

 

Here's a clip showing the Lyme controversy playing out between a study published in the New England Journal of Medicine, and a study by Columbia University published in the medical journal Neurology, showing opposite outcomes:

 

For a more in-depth (but again, brief) look at the controversy you can also watch the Lyme Documentary "Under Our Skin" in it's entirety for free at http://www.hulu.com/watch/268761.