Welcome Texaslime -
Great responses already. I just wanted to encourage you to reframe the question, which might lead you to more usable info.
The first part of the puzzle is understanding how different the Lyme microbe is, how it affects the immune response to it, and how Lyme is tested.
Lyme tests are serology tests, which tests ONLY the immune response to the presence of the Borrelia burgdorferi (Bb) microbe (which causes Lyme disease) and DNA remnants of it. It does not look for the presence of the microbe, itself. This is the test used in the two-tiered testing recommended by the CDC and is what most MDs use.
But studies have shown these tests and the methodology used to implement them to be as much as 50% inaccurate (we can dig up links if you like). There are several reasons why the tests are inaccurate, a primary reason is the nature of the microbe and its effect on the immune response to it.
The layperson version of the science is that once in the body, the Bb microbe mounts its attack on the immune system to disable it and its stealthy characteristics allow it to evade the immune system. The microbe also doesn't spend a lot of time in the blood stream unless it is reproducing.
If the immune system can't react normally to a foreign body and produce antibodies against it, there won't be enough antibodies in the bloodstream for the test to detect. Some of the sickest people can't produce an immune response strong enough for these very insufficient tests.
This is why even the CDC states that Lyme is a clinical diagnosis and that tests should be used with context of access,
location, and most of all, symptomology. Any MD you talk with should explain this to you—and if he/she can't, they don't know enough about
Lyme diagnostics or treatment to qualify to treat you.
The truth is that Lyme is a medical "third rail", and many, many MDs will use the poor testing and the fact that the general public has been misinformed about
most everything Lyme, to literally and knowingly avoid treating patients. There are a lot of ways to declare that someone doesn't have Lyme, when they actually do. Other MDs simply don't understand how to diagnose properly, which is why an LLMD is critical.
1. So - I would rephrase the question to be "is it true that you need to help your immune system register a sufficient immune response that can be detected with the tests?" and the answer is "yes" for many people.
Although everyone has their own journey. Girlie and Traveler provided theirs. I had Lyme for 16 yrs before getting diagnosed. Like most people, my LLMD followed the CDC requirements for testing, which includes 2 tests. My ELISA was negative (in general, the ELISA looks for immune activity, not specifically for Lyme). Luckily, my LLMD ignored the CDC's recommendation to STOP testing if the ELISA is negative, and she provoked with Olive Leaf Extract (which has worked for some) to get the immune system some support and 4 wks later, I did an IGeneX (which looks for antibodies to Bb) and was CDC-positive.
Case Surveillance vs. Diagnostics
If you're interested, there are other reasons people have trouble getting a diagnosis from the tests and the MDs who don't understand how to use the tests, including the fact that the tests and methodologies are primarily used to satisfy case surveillance
needs, where the .gov tracks trends in the disease. This is a primary reason the CDC warns against using the tests solely to diagnose.
While the CDC has no formal medical authority whatsoever, it is what the medical industry follows. To satisfy these surveillance proposes, the CDC developed a specific case definition for lyme disease that is used in qualifying "new lyme cases" per the testing results.
Thus, the very, very strict interpretations of the data (number of bands required for a positive result, etc.) are geared to spot trends in disease spread, not diagnosis (literally, this is explained on the CDC website and this is one of the reasons the CDC expresses that the diagnosis should be clinical, not based solely on the tests). The absence of certain bands or the minimum number of bands does not indicate the absence of the infection, but way too many MDs don't understand or willfully ignore this, resulting in more misdiagnoses than correct diagnoses.
Another reasons it's tough to get an MD to recognize the infection is that many (most?) regular MDs will follow the CDC recommendations to a "T" and will not administer the follow up Western Blot if the initial ELISA is negative. The reasons the CDC created this two-tiered methodology are complicated, but it is yet another reason more people have Lyme than can get diagnosed.
2. The key to having a productive conversation w/ an MD in order to get to the root of your diagnosis (or their reasons for refusing one) is to first, understand the issues w/ testing and diagnosis yourself. This took me awhile. Once you understand the bones of it, it is much easier to have a conversation and ask the right questions. Most LLMDs simply don't have the time to educate each patient - far too much to do during your appointment.
But as long as you understand it, you can get enough feedback to ascertain if the MD simply doesn't understand the issues or is avoiding the issues. Either way, if an MD can't have this conversation w/ you or answer your questions about
it to your satisfaction, that person probably isn't the best partner for your Lyme diagnosis & treatment.
3. I would peruse LymeDisease.org for some good info.
4. Agree w/ the others - these herbal protocols can help support your immune system and some have had good success getting a positive test result with some time under their belt w/ the herbs.
Post Edited (Pirouette) : 4/8/2017 12:31:03 PM (GMT-6)