50 comments

  1. I think the CDC is far more concerned with the problem of antibiotic resistance than the personal experiences of what people with lyme disease go through trying to get well.

  2. hahahhahaha yes its not lyme disease. Based on the fact that your physicians wouldnt even give me antibiotics when i came in with a bullseye rash and was told I have bronchitis

  3. Or maybe your doctor says nah….. your first test was negative…. then months later as you get sicker and sicker you have another series of tests done and they are all positive . Shame on the CDC for not diagnosing and treating this horrible disease and it’s many co-infections appropriately

  4. Oh, heavens. The internet has turned so many people in "experts" in things like chronic Lyme. There's a term for that: the Dunning Kruger effect. I wonder what would happen to this Lyme epidemic if patients only sought out actual Lyme specialists… fellowship trained infectious disease doctors… and not the snake oil salesmen that are currently out there.

  5. This video was at the top of search results from a search filtered by “today” on
    March 18, 2019. Please share comments so new potential Lyme victims can gain more info.

  6. What test was given to this man? Why was a dr willing to give him iv antibiotics. Lyme doctors, llmd, don’t just put in a line and give people iv abx. People can ask others with Lyme if a particular Doctor is a good choice. If the sanctioned test did not fail so often, this guy would have known if he had Lyme or not.

  7. HE PROBABLY STILL HAS LYME AND THERE IS NO DEFINITIVE WAY TO PROVE THAT THE ANTIBIOTICS CAUSED THE REST OF HIS HEALTH ISSUES!

  8. What is really strange in this story is why the expert doctors Robert has seen, didnt rule out cancer first but only after so many suffering, and instead rulled out Lyme? One thing that CDC fails to point is that the Antibiotics is a treatment recommended for many diseases and infections and that many people treat the infections but die from antibiotics that are aproved by FDA and recommended by CDC them selfs?

  9. "Chronic Lyme Disease" is a total hoax. The quacks diagnosing this should have their medical lisceses revoked. I was also diagnosed with "Lyme" by a practitioner who wanted to put me on extended antibiotic treatment. Thankfully I was skeptical enough to get another opinion. There are so-called physicians who make it their entire career to diagnose virtually anyone who sets foot in their doors with Lyme Disease. Because it is actually a real infection, it seems to have some credibility, but do not accept it. They will take your blood and tell you they found the bacteria in it, but it's a scam. Go to a legitimate M.D. and get a Western Blot test as this is the true way to get a diagnosis. Extended antibiotic treatment is so dangerous. If you are suffering physically and mentally for so long with no resolution, you will eventually find someone who will diagnose you with this "disease" and it can feel like a relief to finally have a diagnosis, but you are being taken advantage of because you are vulnerable. I hope that everyone that is suffering out there can find peace and healing, but please don't let yourself be harmed by the scam that is "Chronic Lyme Disease".

  10. SERIOUSLY???? WHEN WILL YOU STOP THIS???? CHRONIC LYME IS REAL AND MOST PEOPLE ARE NOT CURED BY ANTIBIOTICS!!!!

    THERE ARE MANY THING THAT WILL HELP CHRONIC LYME, DO NOT PUT THE IDEA THAT THEY DONT HAVE LYME INTO OUR HEADS BECAUSE SOME PEOPLE THEN WONT KEEP FIGHTING AND LOOKING FOR TREATMENTS!!!!

    ASK FOR EVERY LYME TEST IF YOU GET A NEGATIVE OR IF THEY DENY YOU TESTING AND IF THEY SAY NO, GO TO A DIFFERENT DOCTOR THAT ACTUALLY CARES ABOUT YOU AND WILL DO THE SECONDARY TESTINGS.

    THE CDC DOESNT EVEN WANT YOU TO KNOW ABOUT THESE TESTS BUT THEY DO EXIST!!!! THIS IS ALL PROVEN AND THEY KNOW IT.

    THIS IS KILLING US!!!! STOP IT NOW!!!! DO YOU WANT US TO KEEP DYING????

  11. I don't understand how the CDC continues to SPREAD Lyme disease instead of accepting the hundreds of studies in human and animal models that show Lyme 100% persists. Its really just the basic pathophysiology of Lyme, you don't need to be a microbiologist to understand how it works you just need to be able to read some studies that establish it… the CDC is really off here

  12. why does the CDC work so hard at trying to deny Chronic :Lyme when so many studies show the existence of same and the existence of Lyme biofilms and the survival of lyme spirochetes after anti biotic treatment? does anybody know what their agenda is for denying what is so obvious.

  13. Anecdotal, n=1. This is not a story of chronic lyme but rather that of an incompetent doctor. Not even a causual mentioning of laboratory blood work…complete garbage

  14. The fact that the CDC only has four case reports of Lyme carditis on their website tells you that they are woefully out of touch with the medical community treating Lyme patients, and Lyme sufferers in particular. The reliance on incidental reporting and retrospective chart review does a disservice to those struggling with the disease. The lack of intellectual curiosity and reliance on infectious disease "experts," who have a vested interest (i.e. research publications) in maintaining the status quo is appalling. The CDC  relied on those same "experts" who assured them that standard isolation garb for RN staff was fine when treating Ebola patients, when in actuality many of those "experts"  had never treated an Ebola patient and were clearly wrong. Just ask the RNs who contracted it. Where is the independent laboratory research and funding? CDC is a mess.

  15. This is a perfect example of bullying people to death. This video is the first link on the CDC's page for Lyme Disease guidelines. It's a single account of a misdiagnosis and should not be the first listing doctors look at when looking up guidelines. You would not believe how hard it is to get help for this life threatening disease. Just look at all the videos from personal accounts here on Youtube.

    Please help flag this video for bullying.

  16. normally you would get an mri before even getting a test allowed for lyme? this is only one persons story…

  17. Why on earth does the medical community refuse to accept that Lyme can stay in your body longer than a short round of antibiotics?

  18. I recommend Lyme sufferers to Report this video and tick the "Harmful.." option. This is absurd propaganda and should be removed. A ridiculously stupid diagnostic process, that this poor guy happened to have, is being used to belittle true Lyme PATIENTS!

  19. You can only lie for so long CDC. There's a reason you are accepting little to no interviews with people about chronic Lyme disease. It's because you know sooner or later you're going to be exposed on a main stream level, and then you're going to pretend you had some sort of "study" that makes you believe in chronic Lyme when you knew all along. And as far as getting a second opinion regarding Lyme disease I DID and spoiler alert it wasn't from a doctor who follows your false guidelines.

  20. My thought is that the MDs should have done a brain MRI w/ neuro symptoms to rule out/in other issues. This isn't a Lyme treatment problem, this is a lack of investigation before settling on a diagnosis. Yet – It's presence on the CDC website politicizes the controversy that is ever present in the 'Lyme world.' Let's see it for what it is.

    Any good RN and MD knows that diagnoses are never set in stone and should always be re-evaluated based on emergence of new or old symptoms and response to treatment.. There is no quick fix w/ Lyme Disease and antibiotics are most certainly not given out easily and liberally. It breaks my heart that this is on the CDC website when the misdiagnosis of this gentleman was related to physicians who didn't evaluate their patient fully before diagnosing. Instead it appears to be used by the CDC to denounce the many approaches to lyme treatment when someone may actually has the disease.

    FDA approved tests… that's not the solution. The solution is making sure all Western Blot bands are checked for in those who have never had the vaccine. Many bands were removed form the panel b/c vaccine recipients would show positive. That leaves ppl. w/ less chance of diagnoses because SOME people had a vaccine removed from the market. (How about a check box on a lab slip. If you and the vaccine, the WB bands that react should not be considered in determination of a positive test. If that box is not checked, the WB bands are all included in the test result. Seems simple to me.)

    The solution is understanding the science behind treatment studies and the bias that exists. The solution is accepting that there is not one answer for diagnosis and treatment b/c of the variability in Lyme presentation. And has there ever been Lyme and co-infection treatment studies in the USA? Hard to cohort patients because of the variability in presentation and difficulty in tracing back to see how long someone has been infected, and what tick-borne illness(es) they have, and type of immune system dysfunction that may have developed while searching for medical answers, etc…

    CDC… It's time that you at least put the ILADS Guidelines on your website and consider removing guidelines from 2006 as the primary source of disease and treatment information. At least show all science instead of choosing 1 view and omitting another. Does everyone know the ILADS guidelines (2014?) are included and IDSA 2006 have been removed from the Institute of Medicine Guideline Clearinghouse for good reason? Yet the CDC keeps those 11 year old guidelines on their website… and BTW – That's when they were published… the science in the IDSA guidelines was done prior to 2006 to allow for publication.

    To the gentleman in the video, Robert. I am super thankful that your real diagnosis was made and I am disturbed that it took as long as it did. I hope you are doing well!

  21. Is this a joke?? I was tested for everything under the sun. Lyme is the only thing that was positive. And I've spent the entire last year going thru alternative treatment and learned how to walk again. I would never wish this upon anyone but maybe if one of the CDC members lived or witnessed it first hand they'd have a different opinion. Maybe this has something to do with Plum Island?? Interesting government systems we have.

  22. Chronic Lyme disease is real. The IDSA's guidelines have been REMOVED from the National Guidelines Clearinghouse, which is the body that governs medical treatment protocols in the United States, because the IDSA was investigated for conflicts of interest and their data was bogus, and they were given a timeline to clear it up but they never delivered! You know who's guidelines remain? ILADS. The group of physicians and researchers who assert the chronic nature of Lyme disease and it's ability to persist after antibiotics based on over 700 peer reviewed papers. This information is obsolete and inaccurate and it's very irresponsible and criminal of the CDC. 2 seconds ago•

  23. Yes, we saw an infectious disease doctor for our very sick son. He treated him for 30 days then pulled the piccline. Four months later he relapsed. When I called the ID doctors office, they refused to see him again. By the way, it has been found that many tumors and cancers have an infectious cause. More and more people are getting Lyme and have been to over 50 doctors still not getting help. It was a Lyme literate doctor trained by ILADS who saved his life. The CDC needs to wake up and start listening. You are treating us just like how AIDS patients were treated years ago. Maybe you need to open your ears instead of your mouth. Listen to your patients!!!

  24. I can't believe the CDC released this! The CDC's tests on Lyme is giving false negatives to THOUSANDS of people with Lyme!!! These people need treatment! And even if you're diagnosed, because the CDC says you still don't have it, insurance won't cover it… it's a real nightmare. Literally thousands of lives are being ruined because of the CDC. And then they release this?!? This video is such an illogical fallacy it blows my mind… I smell corruption

  25. Dummies, all of us with Lyme disease check for tumors before we get diagnosed with Lyme. When you don't have tumors, and still have all the symptoms of Lyme disease, then criminal conventional medicine calls you crazy. All thier tests don't work and you are still so very sick. Hate this stupid video. An infections disease doctor will send you away when you have Lyme disease. Sick video intended to keep people sick and call them crazy.

  26. Finally….a bill passed in senate. After years of suffering, may we all get an EDUCATED panel who understands CHRONIC LYME. Along with the suffering, denial of long term treatment is a slap in the face! Anyone who believes this BS…..Will only open their mind if they, themselves get it or a loved one. Shame on you!

  27. Have had numerous health issues for 10 years. Thyroid issues, Hashimoto's also at risk for Huntington's Disease. 7 years ago developed tingling in extremities and lips, strange sensations, feeling achey and flu like all the time, and a host of other symptoms and poor balance eventually. I suspected Lyme for the last 5 years but when you are at risk for HD that is all a doctor sees. "Get tested!" The #1 symptom of HD they are taught is denial, so they won't even listen when you believe your symptoms don't quite match up. Testing is a slippery slope. Need to have all your ducks ( life insurance, long-term disability insurance, long-term care insurance and me emotionally and socially ready for results) before you get tested. Genetic counseling is usually required before they test. At any rate a got my relatively new doc to test for Lyme and it came back positive. Starting on Doxycycline today. Don't know if this will be effective since I have had this for 7 years. I did not get to ask the doc questions as she is out of office for a bit and another doc took results and prescribed the Doxy and just left a message to pick it up. Hope this is a start of getting better.

  28. before you read this, you all need to stop fighting over these things, it is not going to resolve anything, it is only going to show that some people don't believe in some practices, and if we are going to do something about this, we have to do it OURSELVES!

    why let people get too us if it is not going to help anyone

    lymes disease is a problem that MUST be resolved. but RESOLVING DOES NOT MEAN ARGUING.

    i have lymes, and every day for the past week, which is not very long for those of you with lymes out there, i have been having joint pains to the point of me crying, which hasn't happened for two years, it was one of the scariest things i had ever felt both the time i originally had the pains and couldn't move my legs and the time i knew it had come back.
    i am fourteen now, and am still scared of what could still happen.

  29. Oh wow, my mother had a pituitary tumor that was around 1980 and her Philadelphia neurologist was Dr. Lin. He was the best. Messed up my mother's life. Can't explain my symptoms either.

  30. Obviously it is important to rule other things out as part of diagnosis. Lyme testing is still unreliable. So doctors need the whole picture. In my case, doctors and testing ruled out everything from a brain tumor to MS before coming to the Lyme diagnosis. And now antibiotic treatment has gotten my life back — I'm so grateful not to be bedridden any longer. And I hope accurate testing is coming soon.

  31. Wow how pathetically convenient. Asked my cardiologist to go forward with research on how to mend & heal these people's hearts at the CDC. I then realized even a heart surgeon wouldn't be able to come up with any treatment to fix the hearts of people at this organization BECAUSE no-one can fix what's not there. They don't even have a heart. Hmph.
    FYI, our Llmd's check all of these things before and throughout treatments. Not to mention the evidence now that Lyme can induce tumors. My support group leader had a tumor removed & sent it to a pathology lab. It was filled w/Borrelia spirochetes from the Coinfection Protomozoa Rheumatica. I think I'll choose to let this video be of humor to me in this so epic timeline!

  32. I like how people who claim that Chronic Lyme Disease exists ignore the double-blind placebo-based peer-reviewed literature showing that long-term antibiotic use does not outperform a placebo. I tested positive for Lyme Disease and I will take evidence-based medicine any day.

  33. I've heard about a new ultraviolet machine called the UVLRx that's being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

  34. Don't worry the CDC knows everything. After all, they were the ones that told everyone, at the top of the hype of the Ebola thing, not to worry about going on public transportation because you couldn't get Ebola from there. BUT, if you had Ebola, not to take public transportation because you could transmit it.  Huh? If no one on the bus can catch it, who exactly would you transmit it to?! Say what?! TOTAL UTTER CRAP.

  35. It is so laughable how the CDC can continue to ignore the obvious and, refuse to further reasearch the truth.  Lyme is killing me.  I am in a wheelchair at 33 and, gravely ill.  It is my guess that it would cost our country less if they would simply do the ethical thing by reasearching further into chronic lyme and not refusing to except that this illness is really very common, and often chronic, and difficult to treat and serious.  I went from working full time to then needing nursing care and, am not able to function.  If we could educate the doctors and find a better way to test and treat for this, we can overcome this horrific and debilitating disease.  Shame on the CDC for their LIES.  I hope they get LYME!!! Then, they will know the pain and suffering and things will change.

  36. I appreciated Michelle Trostler's comments, since someone I know was first misdiagnosed at the Leheigh Clinic (they said the symptoms were gall bladder and badgered her and her parents about what they had already concluded was heavy drinking).  When the issue of Lyme disease came up, they at first dismissed it, suggesting that a gall bladder removal was called for, and that delay could be devastating.  No gall bladder removal was scheduled and Lyme disease was found.

    OTH, there was no way to know how long it had been in the system, and the 30 day treatment now (several years later) appears to have been inadequate.  Here, again, Michelle's comment are quite germane.  We have just watched a classic "fob off" a medical "bait and switch", in which someone sincerely describing his symptoms and diagnosis is fed to us as a useful alternative.  "Brain tumor"?  An everyday alternative to Lyme? Get real.

    Frankly, differential diagnosis is what distinguishes great doctors from pill pushers, and it is beyond irritating to have the CDC misuse its supposed deep knowledge as this video does.

  37. CDC, if you are serious and responsible people, you ALSO need to inform people that feeling worse after treatment might not always suggest that it´s not lyme disease but that it could simply mean that the infection has not been cleared. You know this just as well as unbiased research does, but for some reason you seem very selective and biased in your information – the exact opposite of what your purpose is.

  38. The video states to only use the FDA cleared fully validated tests.. The CDC even admitted that those "fully validated" tests are no better than a coin toss! They are extremely inaccurate. Not everyone gets better with the antibiotics, as they are not a cure, or the answer to this disease..Once Lyme disease has gone chronic a person will have it forever..A person can't eradicate this bacteria out of the body if left to spread. There is the Embers study (look it up) and other peer reviewed studies which are proof to that.  There is no such thing as "post treatment lyme disease syndrome" and there is no proof or studies to back up this theory..They simply say cause this syndrome is unknown….more like the lyme bacteria never leaves the body..There are NO tests proving that anyone has ever been cured from Lyme disease with the IDSA treatment guidelines. In fact, many people with lyme have been on several different long term antibiotic regimens and still will have a positive CULTURE test…THIS IS OBVIOUS THAT THIS BACTERIA IS NOT BEING KILLED OFF WITH ANTIBIOTICS…There are so many lies and corruption surrounding this disease. This madness must stop!  WE NEED A CURE THIS DISEASE IS MISERABLE AND DEBILITATION! The symptoms of Lyme can be a mile long….PS- Lyme is everywhere, even in Idaho.

  39. The tendency in Sonoma County is to ignore all possibility of tick-borne diseases (7 and counting transmitted by Ixodes pacificus) until way too late.  Half of all CA lyme in dogs are found in Sonoma County (per Companion Animal Parasite Council).  We have a lot of lyme here. The chance of your tick-borne disease being misdiagnosed as something (anything!) else is far, far greater than the chance your Lyme is really a misdiagnosed tumor.  This article is a sham and should never have been posted on this page.

  40. It's truly a shame that the CDC has no idea what they are talking about.  Shame on them!!!!!!!! 

  41. CDC is just wrong!!! Every lyme doctor that i have seen and my friends have seen ,one of the first things they do is make sure nothing else is going on along with the lyme disease ,via CT,MRI ect.. CDC once again just trying to discredit Chronic Lyme Disease. 

  42. Shocked and at the end all I have to say… CDC you should be ashamed of yourselves. Funny how I was Pre-MS until getting correct lyme treatment. The best part of you doing   your part to make sure lyme patients were persecuted against was that you almost killed  both my daughters. You stole over half of both their lives and unless you do you your part I hope none of you are religious because you have persecuted and stole the lives of millions and I would hate to see what waits you on the other side. 

  43. Why, why why?!!! The CDC spends more wasted time and money defending it's eroding posture against it's unethical, inhumane and statistically invalid stance that late stage chronic Lyme disease does not exist. What a sleazy and desperate video. Too bad there isn't a middle finger instead of a thumbs down. Yeah, I'm ANGRY- we finally are gaining traction with the Take A Bite Out of Lyme Challenge and Avril Lavigne is on the cover of People BUT the learn more link goes to the CDC page which features this ignorant and misleading "New" video. ARGHHH!

  44. Thank you for your suggestion to find a FDA fully validated Infectious Disease specialist if you still have problems.  It's been 15 years for me of coming and going symptoms.  I did go to our Calvert County Maryland infectious disease specialist and he did treat me for a month or two.  I finally improved greatly when I was treated for a co-infection Babesia.  But he (and his associates) will not accept any more Lyme Patients.  He's afraid of losing his license.  I guess investigators scrutinize practices for using long term antibiotics?  He says this has happened to other Drs. throughout the country.  I wonder if some Drs. want to help but feel bound by medical protocols that say they can treat according to our symptoms but then they possibly get investigated and/or shut down?   Is this true?   I heard New York State passed a law to prevent Drs. from being investigated and shut down.   
     I've had MRI's, Xray's, rheumatologists, EKG's, EEG's, Tilt tests for syncope, carpal tunnel surgery, eye doctors, brain scans, neurologist full testing, Physical Therapy over and over again, Colonoscopy, Blood tests over and over again, Dentists, etc.  So I think I have and continue to check out all possibilities.   Do you have any suggestions for me since our FDA fully validated Infectious disease Dr. will not treat Lyme patients?  Should I try traveling to New York?

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