A Patient's Response to the CDC Report on Chronic Lyme Disease


If you haven’t heard, the Centers for Disease Control recently released a new report on chronic Lyme disease, intravenous prolonged antibiotics, and bacterial infection. If you haven’t, give it a read here.

The report highlights five case studies in which a PICC line or external object caused bacterium, sepsis and even death. I am a living testament that most of this is misinformation, and to me this seems to be controlling science meant to get the outcomes desired. It doesn’t seem to be the true nature of science and medicine, which is to objectively collect all the data, run many tests, and analyze comprehensive results that progress forward. It’s well-known that Lyme disease is one of the top underfunded diseases for research. Because of this report, people might argue that since there is no positive evidence, then there is only negative evidence.

The report did not include any positive case studies. So if a person who is not “Lyme-literate” but has Lyme disease reads this, they may never get the treatment that could change their life. I was so scared of needles at first. But now over two months in, I am the healthiest I’ve ever been. I have Lyme, bartonella and tularemia, and two gene mutations in my liver that slow detox, which all created havoc when I tried to take oral antibiotics but was still misinformed about my co-infections. My body has had Lyme in it for four and a half years. When I took oral medication, I could not absorb it into my body correctly and all my symptoms would flare severely, sometimes ending in hospitalization. Lyme and co-infections had taken over every body system except my heart and lungs. Tularemia itself can be fatal if left untreated.

The Centers for Disease Control should serve every American, but what if they say your disease doesn’t exist? And that treatment that is saving your life is actually extremely dangerous? I believe this kind of one-sided science is causing people to suffer, and possibly die. Putting “chronic Lyme disease” in quotations in the first sentence shows me that these people are not on my side, even if I have the medical tests to prove it.

I just received lab work that my tularemia levels are now negative. It’s the first piece of concrete medical evidence from my body that this treatment is working. I receive an IV catheter five times a week for antibiotics, nutritional therapies, and antioxidants to assist in detox.

The report focused on PICC lines, which I have never had. But with a good nurse or doctor overseeing the treatment and hygiene, everyone I know is fine as it concerns to sepsis and bacteria.

 

The CDC says that a bullseye rash and flu-like feelings occur with a Lyme infection, but that is widely known not to be true for every case. I saw the tick bite me. I didn’t get a rash or flu-like symptoms, so my doctor didn’t give me a test. If she had, it could have changed my entire life. I might not have had to drop out of grad school, stop driving, become housebound, and experience so much physical, emotional and mental suffering.

The report says the recommended treatment is two to four weeks of antibiotics. And for some who catch it early, that works and it’s fantastic! But that treatment is limited, close-minded and factually does not work for all patients.

Lyme-literate doctors are not embraced here, or studied much further in their scientific findings, research, patient’s stories. A chronic Lyme diagnosis can be given without a positive result from the standard CDC-approved testing, and the report does not shed light on this practice. They fail to explain that their testing is not always accurate and doesn’t cover other tick-borne illnesses, like the potentially fatal tularemia I also got.

The report goes on to make the argument that these chronic Lyme diagnoses could be wrong, and missing the real cause completely. And that very well is possible. But ask any chronic Lyme patient how many other diagnoses they got before Lyme — it’s usually about five to 10 if we are lucky. The CDC does not even seem to believe we are real, and concludes in this report that they will continue to study the adverse reactions to chronic Lyme treatment. But they didn’t say they would study how to solve chronic Lyme  disease at all. Because a problem isn’t a problem if it doesn’t exist, right?

Well, tell that to my body that feels so much better every time I get IV meds.

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Photo by James Gathany via Wikimedia Commons

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