The more I blog, the more I get the sense that I have a lot of people who are reading my blog. Excellent. First mission accomplished! Awareness is clearly spreading and that is the number one goal.
The more I blog, the more I get the sense that other people are seeing me as one isolated case; one random, poor girl who has a rare disease that no one knows anything about; one person that you should feel bad for.
If there's one thing I have become desperate for people to understand, it's that I am none of those things. None of them. I am not an isolated case. The disease I have isn't rare, and doesn't only affect me.
The Center for Disease Control says that in the United States there are 300,000 new Lyme diagnoses per year. Do you know how hard it is to get a Lyme Diagnosis?? Especially according to CDC standards (they're outrageously high. Most people who have Lyme test negative by CDC standards...)?? It took me 17 years to get re-diagnosed after my initial infection at age 10. 17 YEARS! There are 300,000 confirmed new cases of Lyme Disease per year according to the CDC, with outrageous standards. That's quite a few people. Now think about all the people who are walking around with it and have no idea they have it yet. We are talking about hundreds of thousands of people in the U.S. alone. Lyme is present on every continent, including Antarctica now (recent finding). There are over 300 strains of Lyme Disease worldwide and 100 strains present in the United States. Do you know how many strains they test for? Take a guess...
One. One strain. There are one HUNDRED strains in the U.S. And couldn't it be possible that some people living in the U.S. contracted their disease while abroad? They test for one strain. If you don't test positive, apparently you "don't have Lyme Disease." Okay, NOW imagine that 300,000 people happen to get CDC positive tests results in a year based off of a test for ONE strain. There are 100 strains. And those 300,000 people with positive blood tests are the lucky ones who even got to the point of taking a blood test (see my 17 year waiting period above)!
"The CDC has taken an alarmingly restrictive position on Lyme testing, transforming criteria that was developed for surveillance purposes, into diagnostic mandates. The two-tier testing paradigm for Lyme Disease recommended by the CDC misses approximately half of actual cases... According to CDC criteria, you must first test positive using a highly unreliable antibody screen. Next, the CDC requires a highly criticized combination of two IgM bands (that they only recognize in the first 4-6 weeks of infection) or five IgG bands.
In a March 2015 study, Johns Hopkins’ researchers found that 39% of patients with physician diagnosed erythema migrans rashes (which alone is diagnostic for Lyme Disease) remained seronegative on a Western Blot. Even more tellingly, the majority of seropositive individuals on both acute and convalescent serology had a negative IgG western blot, demonstrating that IgG seroconversion on western blot was very infrequent.
Is this starting to sink in?
Now add the co-infections. When you're initially infected (likely by a tick bite, but not in all cases), it's a lottery as to what combination of diseases you'll get. Perhaps that tick was carrying just Lyme Disease. Perhaps it had Lyme and Babesia. Perhaps it had Lyme, Babesia, Bartonella, and Erlichiosis... Perhaps it was carrying one of the other infections and not Lyme at all. The initial tests for Lyme Disease test for just that-- Lyme Disease. And the initial tests are laughably inaccurate and miss HALF of the cases who are chronically ill. And what about the hundreds of thousands of people who have any one of the other 99 strains than the one tested for, or any one of the other co-infections without Lyme Disease?? Their tests come up negative and they are left in limbo, untreated.
If you do happen to get a positive test, any doctor will treat you for Lyme... For a maximum of one month. "There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the U.S. and
European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed."
My point is that Lyme Disease is still hugely misunderstood, even the medical community. When I say this, I want it to be crystal clear that I have never and will never mean this as an attack on any particular medical professional. My sister is a nurse, my sister-in-law is a nurse, my grandmother was a nurse, my father is a doctor of chiropractic, I have two cousins who are physician's assistants, another who works in a surgical office, an uncle who's a surgeon, countless friends who are doctors and nurses, students who are doctors and nurses... And I love and respect them all. There is a serious flaw at the very core of our medical system regarding this disease, which is none of their faults. The flaw is that the IDSA (Infectious Diseases Society of America) writes the regulations and guidelines for both diagnosing and treating Lyme Disease, and those guidelines are TERRIBLY wrong, ineffective, and outdated, as are the blood tests. This is why there are medical and naturopathic professionals who have studied Lyme Disease extensively, are ILADS certified (International Lyme and Associated Diseases Society) and are specifically "Lyme Literate." They can accurately and effectively diagnose and treat Lyme and co-infections, and treat for long enough to get the patient into remission. This is why it is imperative that someone who is suspicious they have Lyme Disease see an ILADS certified doctor to either get properly diagnosed with Lyme, or to properly rule it out as a possible cause of illness.
Please feel free to reach out with any questions.
Thank you, thank you, thank you for listening!
References:
-http://www.cdc.gov/lyme/faq/index.html
-http://www.ilads.org/lyme/about-lyme.php
-http://www.ilads.org/lyme/lyme-quickfacts.php
-http://lymediseasechallenge.org/the-facts/
-http://lymediseasechallenge.org/testing/
-https://www.envita.com/lyme-disease/lyme-disease-testing-a-difficult-diagnosis-contributes-can-lead-to-problems
-https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
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