The CDC owes Lyme Patients, Researchers and Lyme Doctors an Apology

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

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17 thoughts on “The CDC owes Lyme Patients, Researchers and Lyme Doctors an Apology”

  1. Our family has bed impacted in so many horrendous ways there is not enough time to write it all from my siblings to our children and possibly grandkids.Know it is a scarey devastating disease!!!

  2. I have witnessed so much suffering in my family with Lyme disease. It is heartbreaking! My beautiful niece who was very outgoing and energetic oftentimes can not get out of bed.

  3. It took me 20 minutes to read this article because I had to keep wiping the tears from my eyes. An apology is necessary but the insurance companies are ones who wouldn’t cover Natropath and Holistic doc’s and practices and their treatment regimens and supplements. I am 54 and the first of my symptoms stsrted when I was 23. I’ve been on disability for the past 10 years but I recently needed to get a part time job because of having a son in college and being almost $80,000 in medical debt. I once had my home paid off, some retirement money saved etc.. it’s all gone. I like the one comment about reparations however I don’t think taking money from the CDC or the government is right especially since it’s the insurance companies who refuse to pay for alternative treatments. Reparations should come directly from the Insurance Executives bonuses and all share holdings over 5-7% yields.
    Anyway, thank you for writing this article and for hope to one day have the pain subside and the brain fog lifted.

    1. Hi Robert. I’m sorry for you also. My husband lost his job our home and his mind from this horrid disease. After fighting for 4 years my husband is finally getting a pic line for antibiotics. We had to travel to New York to get the right treatment, and that is after five hospitals refusing to even say the word Lyme disease. He has suffered so much as many of you have and my heart goes out to you . These cdc people need to have their loved ones get Lyme, then maybe they will get a heart. Also we should get reparations for all the money we had to spend to try to get well. It is criminal how the cdc has treated suffering people.

    2. I agree! They do need to pay us back the money that we have paid out!!! Many thousands of dollars…wiping out savings, retirement accounts, remortgaging homes, etc. I want my money back. I’m a retired, broke Lyme victim and my insurance company has failed me. I fought with them, tried to reason with them and was insulted by a “higher up” who kept spewing forth denial after denial and misconceptions as well. Very condescending man. It was a nightmare if a conversation. Insurance companies should have to pay out money for treatments that they previously denied. Because of them, many people have gotten sicker or died because they didn’t have the means to get the money for treatment. The problem begins, though, with the CDC’s denial that chronic Lyme exists!!!

  4. I would accept an apology for all the years of suffering. But I am not holding my breath on that. They will never apologize.

  5. Lisa, thank you for writing your thoughts that apply to all of us are huge TB community.

    Other comments above all right also, an apology is just drop in the bucket to all the damage they have done to all of us.

    My late husband, Jack, and I have had 83.5 years of chronic Lyme disease.

    Each of us was not diagnosed for 35 years for him and I was mused for 35 years by 40 to 50 doctors at least.

    I had Jack’s brain autopsied at his brain made worldwide history November 22, 2015 with two diseases never found together before:

    Lyme disease and Lewy body dementia causing visual/Violent hallucinations like RObin Williams.

    He’s to be written up and published in scientific medical journal in the future

    Dr. Alan McDonald told me that I would be the first co-author or over the three medical folks.This is not happened to date yet!

  6. Carole, Bonnie, Bambi and Tracy all say it very well, so I’ll just echo a few of their words: Lisa we are so lucky to have you!

  7. Thank you for writing and posting this. It’s about time that the CDC started coming around. They really don’t have much choice as their lies continue to be exposed by so many brave Lymies and supporters. I think we not only need an apology but also financial reparation for the 10’s of thousands or 100’s of thousands of dollars we have had had to pay out of our pockets as well as payment for all future treatments we will need the rest of our lives caused by the “nonexistent” illness that we are plagued with for the rest of our lives. The CDC is in (great) part to blame for the many, many lives suffering with this horrific disease. Their actions have been a significant influence in the lack of treatment, research, and insurance coverage of those of us who are living with and suffering with Lyme! No price can be put on human lives and those of us with chronic Lyme have lost what was once a normal life. An apology is just the tip of the iceberg.

  8. Thanks for writing this article, Lisa. It took me 19 years just to get diagnosed (and that was almost 11 years ago). The damage I’ve suffered over the past three decades goes beyond the physical. It’s financial, emotional and social to degree I can’t even begin to explain. It’s bad enough to be this sick without a cure, but to be ostracized, even attacked, by many in the medical community, insurance companies and, as a result, close family and friends has been brutal.

  9. I showed my bite to a doctor and still was not treated. I went back 17 times in a year with different symptoms, so sick I could barely go. It wasn’t until a friend that had Lyme told me what was wrong and I asked my doctor to do the blood test did I know it was Lyme. Then it was chronic and you know what that means. Doctors need to be more informed. Because of what happened to me my doctor is handling things differently. I’m glad for all his new patients but, what about me?

  10. Amen Lisa! 👍👏👏💚💚💚Your words are spot on right! Lyme patients were allowed to slip through cracks. I feel not just garden variety societal apathy, but something more virulent fueled this injustice — and it has had tragic consequences. Tragic not just for my destroyed life and health….but uncountable others. I’m angry and I pray for some type of reparations.

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