Why Are You Still Sick?
The CDC & IDSA's Dismissal of
Chronic Lyme Disease
Please see the menu on your upper left (click on arrow for Chronic Lyme) for a list of articles and information about Chronic Lyme Disease.
From CDC- "It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS)."
OUR POSITION- We call it what it is, CHRONIC Lyme disease. Other conditions that last for more than 6 months are referred to as "CHRONIC" and treated as the same disease the patient started with, so why not Lyme disease?
Please see the menu (click on arrow for Chronic Lyme) for a list of articles and information about Chronic Lyme Disease.
Last Updated- April 2019
Lucy Barnes
This Scientific Paper Will Generate Great Fires
In the Medical & Scientific World!
May 11, 2017- This paper- Chronic Lyme Disease: A Working Case Definition- totally derails the theory PTLS is the ONLY plausible explanation for continuing symptoms after the minimal IDSA/CDC treatment is prescribed and fails.
It clearly establishes infection based etiology for the existence of chronic Lyme disease signs and symptoms, and for the first time it clarifies and documents its existence in the scientific literature.
The paper organizes and documents previous culture & PCR positive cases, not just “suspected” cases, while greatly expanding the list of signs and symptoms actually seen in the clinical setting which have been previously documented, but lay silent and scattered throughout the scientific literature.
It can be used to educate the ninety-five percent of health care professionals that don't have an evil streak and/or a financial stake in the outcome of studies, and who actually have patients interests at heart when they go to work each day.
This official published definition is a solid foundation for establishing more accurate and helpful treatment guidelines.
It changes what IDSA/CDC relentlessly referred to for years (in an effort to discredit us) as a “small, but vocal group” into an “I’m a freaking lion now- hear me roar”.
It advances us as a mightier power to be reckoned with rather than an irrelevant punching bag.
It will make the IDSA/CDC bullies whine and cry because the study is so flawless and solid that they can't touch it!
It justifies the necessity and reasoning for doctors to provide long term treatment when necessary.
It is another punch in the nose for the patent holders of the horrible lab tests that continue to miss 74.9% of the cases.
It puts the seriousness of this disease, that we see and often live with on a daily basis, into the Lyme light for others to notice.
Now that there is a definition it can be used as a starting point for future grants. Previously we were all just statistical "left-overs" that were barely mentioned when a study was completed.
Vaccine studies never addressed chronic Lyme disease in their trials or random studies on prevention, which gives us some fighting power in the event it is ever needed. (And it will be.)
It puts us on the map for the first time as having a legitimate, scientifically documented, serious infectious disease that can produce many symptoms and reduced our QoL.
It can be used as a foundation for disability claims. (There hasn't been one till now.)
It will be difficult if not impossible for IDSA/CDC to counter or tear apart this paper due to its excellent detail and extensive documentation. (They will still try with their lies and bogus studies, but if truth is ever called into question- they lose.)
It shows that even the smallest steps taken over the past three decades have finally come together to become a giant leap for mankind.
It lends credibility to our good science that is brutally attacked by IDSA/CDC on a daily basis.
It will be hard to dispute the findings because many of the references provided come from the IDSA/CDC’s own published studies. Straight out of the horse's mouth (or rear-end).
It combines results from many older and newer studies (1986 to 2017) performed in the USA and internationally and forms a complete global picture of the disease process.
It provides us all with a scientific document that shows our long history of having published science that is and has been supporting a different view point. (nanny nanny poo-poo)
It opens doors for health care professionals who are and have been “on the fence” to feel more secure and supported regarding patient treatment options.
It should slow down or totally eliminate medical board assaults on those who don’t strictly adhere to the IDSA/CDC limited guidelines.
It compliments and adds additional support for the most recently published ILADS treatment guidelines, the LD.org patient survey, etc.
The study opens the door to initiating future law suits when no treatment is rendered for a condition that officially now exists, even with negative tests, and for other atrocities carried out on humanity.
It certainly calls into question where past and current NIH/CDC grant funding has been and will be going and why.
It addresses the pharmacies la-tee-da policy that has refused patients medications based on the limited IDSA/CDC guidelines treatment protocol and additional pressure from behind the scenes from the IDSA/CDC.
It has important information to educate professionals in just about every field of medicine- rheumatologists, neurologists, psychiatrists, dermatologists, cardiologists, etc.
It can be used as the basis for newly developed educational programs on Lyme disease.
We won't have to apologize or defend ourselves over the "controversy" anymore because it is over and done. There IS such a thing as CHRONIC Lyme Disease. It is official now.
This beautiful paper instantly discredits any new IDSA/CDC guidelines coming out that plan to use the PTLS theory as justification for ending Lyme treatment for patients who remain ill AFTER being given minimal treatment.
And Yes. I know- I'm bad, but I couldn't resist...
This study takes us from baby flounder status to a whopping whale status.
It will totally freak out insurers, IDSA and the CDC, amongst other unclean entities that are evil. (I would love to be a fly on that wall when they hear the news.)
It will be like having egg on their face now (and once again) because it has been proven they are not just wrong, they are “officially wrong”.
How Will It Change Things At The New Patient Level?
Will the next unsuspecting person who gets chronic Lyme disease automatically be given necessary medications by every regular doctor on the street corner? No.
WHY NOT?
We ALL need to get involved and work it, baby, work it. This is like someone winning fifty million dollars in a lottery. If the money just sits there on the kitchen table it can do no good and nothing changes. We’ve got to jump in and start using this paper to our advantage.
Again, work it, baby, work it. You all will need to do your part to get the word out there.
Media
There are some good people still out there. And every mention of this definition in the news papers, on radio, online or in the visual media reaches tens to hundreds of thousands of people who will now see Lyme disease in general as something more than just a rash and a swollen knee. They will see it for what is "official" is now.
Will those whose names are on this study be horse whipped unmercifully for producing this paper with a new definition? Absolutely! (It's got to make you wonder- what were they thinking?) ~smile~
And, unfortunately, they will be sadly and badly beaten repeatedly for a long time to come. Bless their hearts, they took a huge risk publishing this paper in the middle of a ruthless war that never seems to end.
My bet is they could use our help getting the word out there and would appreciate our continuing support.
From me and many others, to the authors- Thank you for reaching out once again to help us when so many won’t be bothered. You are our heroes, for sure!
Lucy Barnes