Friday, August 3, 2012

How to interpet the bands on my Western Blot Lyme Test?

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What do all the bands on my Western Blot Lyme Disease test mean? This is a question that came up recently and I was about to write out a long response to answer this person (their exact question was "Can I have Lyme with only ONE band of Lyme antibodies showing up? Her neurologist told her NO") So I was about to write out a whole essay on what the IgG and IgM antibodies are and what bands are specific for what, and so on, when I came across this wonderful blog called "Life with a Twist of Lyme". The author has a GREAT page that explains exactly what I would have written, so rather than re-invent the wheel, I'd like to direct you to her site (which I've also now included on the left side of my blog because I thought it was written so well). It's under the heading "What do all those bands on my Western Blot test mean?"

The site address is: Life with a Twist of Lyme (A big THANK YOU to the author of this blog - you created a great site that is easy to understand for folks who are just learning about what all this means - like me in the very beginning - I was so overwhelmed with all this technical jargon that it took me a long time to figure out what it all meant. But you put together a great site which has some great information on it for people who are trying to interpret what their Western Blot tests mean!)

One of the segments I chose to re-post here I thought was especially relevant because this question comes up over and over again:

IgM versus IgG is usually interpreted this way: if you have a positive IgM Western Blot, but negative IgG, it may mean that you just became infected fairly recently, because the IgM reaction to infection generally happens before the IgG.  If you have a positive IgG it may mean an established, chronic infection.

OK, finally we need to talk about what POSITIVE means!

How does one decide what constitutes a positive Western Blot test?  In some ways this seems like it would be a fairly easy question to answer, but when you realize that every person's body reacts differently to infection, and one immune system may not make the same antibodies that another immune system might make, then it becomes highly complicated.

In addition, to follow this discussion on all levels, you must realize that most doctors in the United States are NOT well-educated about Lyme disease.  They generally believe that:

a) The CDC and the Infectious Disease Society of America (IDSA) are the ultimate authorities and that anyone who disagrees with them is a crackpot.
(b) Lyme disease is rare, hard to catch and easy to cure (this is the IDSA official "line" and it is WRONG!!!!!!).
(c) Lyme disease should be treated with 2 - 4 weeks of doxycycline and THAT'S IT!  (IDSA guidelines again.  This makes NO sense...there are many illnesses out there that have to be treated very aggressively for months and months.) 

Please understand that there is a political and economic battle being waged in this country with the health insurance companies and the IDSA on one side and many, many Lyme patients who are desperately ill on the other side.  

OK, here are three sets of Western Blot criteria for determining whether or not someone has Lyme disease; let's compare them:

1. The current CDC criteria (used by the IDSA and health insurance companies) for a positive Western Blot are as follows:

      (a) For IgM, 2 of the following three bands have to be positive: OspC
           (22-25), 39 and 41.
      (b) For IgG, 5 of the following ten bands have to be positive: 18, OspC
           (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.  

I will not go into the ins and outs of how they came up with these criteria. You can look at the CDC website for that.  Suffice it to say that when the CDC criteria were first created, they were not recommended for diagnostic purposes.  In fact, there used to be a statement on the CDC website that said so.  I think that statement has now been taken down in an attempt to appease the IDSA. 

2. The criteria used by IGeneX, one of the top Lyme laboratories in the country: IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93.  

3. Possible future criteria in China: I recently read an article about Lyme disease testing in China, where Lyme is spreading rapidly through the country.  The researchers quoted by the article recommended considering a Western Blot positive if just ONE single Lyme-specific band was positive.

So the IDSA and the health insurance companies are in cahoots, but ILADS (the International Lyme and Associated Diseases Society) is opposed to their anti-patient agenda and their highly restrictive and ridiculous diagnostic criteria for Lyme disease. Our heroes, the Lyme Literate doctors (aka LLMDs in the online Lyme communities) are generally member of ILADS and believe that the using the CDC WB criteria for diagnosis of Lyme disease is incorrect.

So what's so terrible about the CDC WB criteria anyway?  For one thing they don't mention some of the bands which are the most highly specific for Lyme disease, namely bands 31 and 34, aka OspA and OspB. Your body can only produce these antibodies if you have been exposed to Lyme spirochetes!

The main reason these were left out is that several of the doctors who originally decided on the criteria were involved in an effort (at that time) to create a Lyme vaccine, and those two bands were part of the vaccine, so anyone who had been vaccinated against Lyme would test positive for 31 and 34 even if they did not have Lyme.  So they deleted those two bands from the list.

However, the Lyme vaccine is no longer being used because it caused terrible autoimmune reactions in a number of people who received it.   But (oops!!) the CDC forgot to put those two bands back into the criteria after they stopped using the vaccine!

And requiring FIVE bands for an IgG to be positive?  How do you know that everyone will produce a minimum of 5 different IgG antibodies?  And why include bands 45, 58, and 66, which are not specific for Lyme disease?  Why not include bands that are SPECIFIC for Lyme???  Clearly these criteria are too restrictive.

It has been said that the current CDC testing misses at least half of those who truly have Lyme disease.

As to the IGeneX criteria, these make a lot more sense, as the only band in their set that is NOT Lyme-specific is band 41.  Band 41 is usually the first band to show up for Lyme but also is frequently positive for people with other spirochetal infections such as syphilis and certain dental infections.

However, in my humble opinion, the proposed Chinese criteria make the most sense, since your body should not be able to produce even one single antibody to a Lyme spirochete unless you have been exposed to Lyme!

In the opinion of many LLMDs, IGeneX is one of the best places to get a Western Blot done, as their testing is more sensitive and they also report the "indeterminate" results, which means that there was some sort of reaction there, but not a strong enough response to be considered positive.  The indeterminate results can be considered clinically significant if a doctor wishes to include those.



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For additional information, I'd also like to include another site by Melissa Kaplan called Interpreting the IgG and IgM Western Blot for Lyme Disease. This is another great site that includes all the bands and explains what they mean (similar to the blog above). 


***(To understand why there is so much controversy over Lyme Disease, you need to watch the highly acclaimed film: Under Our Skin. It will answer all your questions about why it is SO hard for patients suffering from Lyme to A) Get a proper Lyme test B) Get a diagnosis and C) Get proper treatment from a properly trained doctor. - Sandie)

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