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Lyme Disease Message Board


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LLMD - Use Caution
Feb 11, 2012
I'm in the process of trying to track down the cause of my chronic medical problems. I live in an area endemic to dear ticks and have been bitten a number of times so checking into Lyme Disease was an obvious path. At first I knew very little about Lyme Disease so I began studying the disease and found a so-called LLMD. When I first met with this doctor, I gave him the benefit of the doubt. His willingness or maybe even zealousness around believing I had Lyme Disease really bothered me. He told me only one Lab was competent so of course I had the Western Blot test done by this LLMD friendly lab. I came up positive. At first I was happy to have a diagnosis but the course of antibiotics this doctor wanted me to take seemed extreme. He also seemed convinced I had co-infections without any real evidence.

So I looked more deeply into the Western Blot test and this lab and discovered the huge controversy between the so-called LLMD world and the rest of the infectious disease world. I discovered that virtually all the mainstream infectious disease experts and this wild bunch of typically alternative MDs had grown into a war that was apparently causing ill patients to get lost in the battle. The CDC and Infectious Diseases Society of America were on one side while this group of alternative doctors were on the other. The CDC and IDSA seemed to be forced into being TOO conservative while the LLMDs were behaving like they were in the wild wild west diagnosing everyone with Lymes. Since people like myself who are ill are desperate for a diagnosis and treatment, we are susceptible to doctors who are a bit quick at the draw to diagnose. That led to the birth of the LLMD idea which is supposedly a doctor literate at Lyme Disease. This is a non-medical term and any doctor can call himself an LLMD since it draws many patients and $$.

The bottom line is that YOU need to make sure you are being diagnosed correctly before undertaking and dramatic treatment like IV antibiotics. You need to make sure that the Western Blot test is properly interpreted. The lab I was tested at only required 2 IgM or IgG bands for a positive while the CDC and IDSA require 5 bands. The bands are antibodies that are measured by their weight in Daltons. If a molecule in your blood weighs the same as a Lyme Disease antibody, it will show up as a band creating a false positive. There are other molecules that can show up and the 2 band tests is sensitive to a false positive. On the other hand, the CDC 5 bands is more likely to have a false negative.

So if you are a patient who has found an LLMD, you need to make sure he/she is not a zealot and is using the test correctly. After much reading, I came to the conclusion that the CDC 5 bands is overly risky toward missing a diagnosis while the LLMD favored lab is bending toward a false diagnosis. So what can you do? I would recommend getting the Western Blot IgG/IgM test done by 2 labs and looking carefully at what they each found. There is also a new culture based test that just came out and has the promise of helping sort this mess out buts its still not proven. If you were tested by 2 labs with the Western Blot and came up with 3-4 bands on each and a positive on the new culture test, you probably have Lymes. On the other hand, if you come up with 2 bands on the special LLMD lab and zero on the other lab plus the culture is negative, you probably don't have Lymes unless you actually saw the bulls eye when you were bitten.

Just beware of an LLMD giving you a positive Lyme Diagnosis. Make sure you look at why and if it was doubled checked with another lab and ask for the culture tests.

culture





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