As the Truth Slowly Seeps Out
So the CDC is finally slowly admitting a bit more about Lyme disease each year. A couple years ago, in August of 2013, the CDC came out admitting that at least 300,000 new people get infected with Lyme disease each year, just in the United States. [Source] That is grossly higher than their original 30,000 a year estimate.
But we as Lyme disease patients, already knew that right? We have been on patient forums, writing blogs, coordinating protests, putting up billboards, for decades trying to tell the world that so many of us are suffering from Lyme disease.
Now four years after admitting the higher numbers, the CDC is coming out saying that Lyme tests might not be accurate and you may need more then one test to test positive for Lyme disease. They go on to say that in the first three weeks the current tests only detect Lyme 29 – 40% of the time! And they are now suggesting the doctor treat with antibiotics if the patient is even suspected of having Lyme disease right away according to GMA.
Again, we have been saying this for years, and not just us “Lyme patients” but researchers too! [source]
There has been a number of articles written by researchers stating why Lyme tests, specifically the CDC/IDSA suggested tests, the ELISA and Western Blot are not reliable tests. [source] In fact, at least one state has even passed a law directing doctors to inform their patients that a negative Lyme disease test does not mean you do not have Lyme. [See Virginia Lyme Bill HB 962] Also not to mention how the medical boards across the states have been busy attacking and investigating Lyme Literate Doctors (LLMDS) for treating patients based on a clinical diagnosis and for treating patients with long term treatments. [source]
Also, notice that the National Guideline Clearinghouse also changed their Lyme treatment guidelines to follow the ILADS recommended guidelines. Another thing we Lyme patients have been asking and protesting for, for years. Yet, person after person reports that doctors have only given them 2 pills of Doxycyclene to treat their tick bite, if any! The CDC and IDSA need to let doctors know about the guideline changes! The Clearinghouse insists you need at least 20 days of antibiotics for a new tick bite and longer if symptoms persist, but somehow the medical community has not acknowledged this yet. [source]
So call me negative. While everyone is celebrating the fact that the CDC is finally catching up to what patients, researchers and Lyme literate doctors already have known for years, I am concerned that this the medical society we rely on. Shouldn’t it be the other way around? Shouldn’t the average “patient” be catching up to them? Learning from them?
Don’t get me wrong, I am glad the truth is finally coming out. I am glad that the public will be made more aware of this “Lyme disease” situation and how serious it is. It is time for Lyme to get the same attention as the Swine Flu, Ebola and other modern plagues. After all, people do get very sick from Lyme just like Swine Flu, pass it to their babies in womb like Zika, and die from it like Ebola.
But I think the CDC owes us a big apology. All the patients that have had the door shut in their face because their doctors tell them, there is no Lyme disease in (insert state here) or that they don’t have Lyme because their test was negative. All these patients that went on to become “Chronic Lyme patients” and also get called, “Lyme Loonies” from a federal official, Phillip Baker, in charge of Lyme disease research programs, all these patients have the right to say, “I told you so.” We have spent countless hours, money and energy we don’t have protesting, advocating, begging for the CDC to bring attention to these truths. And I believe all these patients deserve a big fat apology from the CDC. [source]
Will that apology bring back all the years of suffering we have endured? No. But a little accountability would be nice. We would like to see that you are trying to work with us, not against us. A little validation would be nice too. It will show our friends and family and co workers that we have lost, because they believed the doctors, they believed the CDC, that we are not crazy. That we are not Lyme loonies. That we are simply sick patients who slipped through the cracks because the CDC and science does not yet have all the answers. No treatment guidelines should be written in stone. Diseases emerge, change, adapt, and so should our treatment guidelines and testing procedures.
~Written by Lisa Hilton