TOUCHED BY LYME: CDC fires another salvo against "chronic Lyme"
Latest scare tactic warns that chronic Lyme diagnosis can lead to “permanent damage or death.”
The CDC has launched yet another volley in its continuing propaganda war against the Lyme community. This time, it’s a new anti-chronic Lyme video posted on YouTube and the CDC website.
The video presents the case of “Robert,” who had a lot of bad symptoms for which his doctors couldn’t find a cause. Headaches, joint pain/stiffness, memory loss, and numbness and tingling in both hands. As Robert describes it, “a lot of medical professionals were confused by my health condition.” Many doctors even said it was “all in his head,” presumably dismissing him without looking further.
Eventually, a doctor diagnosed him with chronic Lyme disease and began treatment. We are not told how this diagnosis was made. Positive lab tests? Clinical symptoms consistent with Lyme disease? History of a bull’s-eye rash? One assumes such findings would factor into the diagnosis, but the video is silent on this.
According to Robert, in the midst of Lyme treatment, he suddenly lost vision in one eye. An MRI showed that he had a tumor on his pituitary gland, which evidently caused the problems with his eyesight and (the video implies) all of his other issues as well.
The lesson the CDC wants us to take from this? That if only Robert hadn’t been diagnosed with chronic Lyme, he wouldn’t be in a world of hurt today. The CDC bluntly states: Robert now has permanent heart and kidney disease, joint pain, and severe obstructive sleep apnea as a result of the incorrect diagnosis and treatment. The strong implication is that the doctor who diagnosed Lyme ruined his life. (How about all the “confused” physicians Robert consulted first, who also failed to diagnose the tumor? Do they share blame? The video is silent on that, too.)
The CDC goes on to ominously warn that “an incorrect diagnosis can lead to permanent damage or death.”
Now, wait a gosh-darn minute, CDC.
What about all the permanent damage and death that can result when Lyme disease itself is misdiagnosed? A couple of years ago, a New York teenager dropped dead from Lyme carditis—when Lyme bacteria invades the heart—after being told by his doctor that he didn’t have Lyme disease. Shortly after that tragic case, the CDC itself reported on more fatalities from unrecognized Lyme carditis in seemingly healthy people.
Folks with Lyme disease know all about misdiagnosis. Pretty much any Lyme patient you talk to has a horror story about it. Either they were diagnosed and treated for something they didn’t have (multiple sclerosis, fibromyalgia, depression, or any of a host of other conditions) or they were told there was “nothing wrong” with them and denied treatment altogether. Even those with a known tick bite and/or a bull’s-eye rash have often been told “it can’t be Lyme, there isn’t any around here” or “that’s a spider bite” or “looks like ringworm.”
Getting back to the CDC’s video, I’d like to offer a credible alternative scenario: What if, unbeknownst to Robert, he had a tumor growing in his head at the time he happened to get bitten by an infected tick, having the misfortune to develop Lyme disease and a growth on his pituitary at the same time? The resulting symptoms could potentially “confuse” a lot of medical professionals, don’t you think?
The CDC’s chronic Lyme denialists don’t cotton to such nuance. They just want to lay the blame on the Lyme doctor. Period. They don’t want to muddy their message by pointing out that misdiagnosis of ANY condition can have serious implications, whether you actually have brain cancer, a duodenal ulcer….or Lyme disease..
At the end of the video, the viewer is told that if you believe you might have chronic Lyme disease, “See an infectious disease specialist who uses FDA-cleared, fully validated tests.” (Yeah, you know the ones. Like the FDA-approved ELISA test that’s been demonstrated to miss as many Lyme cases as it finds. Click here to read more about how the FDA wants to restrict your ability to be tested for Lyme disease.)
If the CDC really wanted to reduce the number of people diagnosed with chronic Lyme, they ought to make it easier for people to get properly diagnosed and treated for acute Lyme—before it has a chance to turn chronic. How about a YouTube video about that?
Once again, we are left to ponder this question: Why does the agency charged with protecting our health instead spend so much time and effort trying to undermine it?
Click here to view the CDC video.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org. On Twitter, she’s @dorothyleland.
- January 10, 2015 at 8:58 am
Another question arises. Is the pituitary tumor a result of borreliosis complex.
And are other tumors in the brain or adrenal glands and elsewhere related.
Instead of triggering a reaction of doctor dissing where is the scientific curiosity.
- January 10, 2015 at 4:13 pm
Off topic I know, I’d like to know if there has been any medical testing to determine if fibromyalgia is lyme or a form of lyme co-infection.
- January 22, 2015 at 9:08 pm
I’ve had two physicians tell me that they feel that Fibromyalgia is a bogus disease and it’s only reason for becoming such a hot topic is to sell Lyrica. I think it’s one of the most dangerous drugs out there. I had a Dr. prescribe me 300 mg 3 x’s a day.. unreal!!! If you watch commercials for Lyrica, you will hear them says “Fibromyalgia is “thought” to be a disease of over active nerves and Lyrica is thought to calm those nerves”.. Now where is the science proven in those statements. It kills me that they don’t say studies have proven the Lyrica stops Fibro pain. I’ve also had Dr.’s tell me that they think Fibro IS Lyme.
- February 16, 2015 at 3:13 pm
You are right to say “it kills me”…for it surly will
- January 10, 2015 at 7:26 pm
The patent number for Lyme disease is 5,242,820, U.S. Army.
Lyme disease symptoms also have a strikingly similarity to gulf war syndrome.
It all boils down to taking responsibility for the disease our government created.
The above ridiculous and anecdotal CDC story is a symptom of a last gasp attempt at avoiding this responsibility.
- January 10, 2015 at 7:59 pm
I am so grateful to have Dorothy Kupcha Leland on our side. Thank you for fighting for us!!
- January 10, 2015 at 11:01 pm
I was incorrectly diagnosed with Guillain barre, and almost died before a proper diagnosis was finally rendered. Three FDA “validated” tests were false negative. IGeniX test was +pos.
Um…aren’t these FDA individuals the people who fast-tracked the LYMERIX vaccine, and who are currently proposing a more lax screen on blood bank donations …and making it easier for persons to illegally cross our bnorders … Even if thery are ill with G**-knows-what?
- January 11, 2015 at 8:04 am
I have many of the same symptoms. Some docs think it’s a vasculitis or autoimmune disorder. Veins are inflamed and painful all over my body. All kinds of specialists and they all kind of chuckle when I ask about chronic Lyme. Where do we go from here?
- January 27, 2015 at 11:47 am
Bartonella causes vasculitis. You could have Bart instead of, or in addition to Lyme. Many of the symptoms of Bart are also symptoms of Lyme. According to some of Dr. Breitschwerdt’s research, about 1/2 of infected patients test false negative on a Bartonella Henselae antibody test, so a negative result on a standard lab test is not definitive.
- January 11, 2015 at 3:40 pm
If you are having inflated veins, or symptoms of a vasculitis, personally, I would be concerned about Bartonella.
- January 12, 2015 at 11:55 am
YOUTUBE HAS DISABLED PUBLIC COMMENTS—PROBABLY ADVISABLE, DUE TO THE ALL THE “THUMBS DOWN” VOTES SO FAR SO I’M POSTING MY COMMENT HERE INSTEAD:
I’d much prefer my tax dollars be spent on desperately-needed research, improved testing and diagnostics for lyme disease and co-infections. The CDC has absolutely no business launching such a convoluted and insultingly biased statement as this. I’m really glad this guy got on the right track—the MILLIONS of lyme sufferers know his pain of being misdiagnosed and tossed around by the medical industry for a shocking lack of knowledge about lyme and co-infections. For every guy like this, there are THOUSANDS of lyme sufferers who are not getting adequate treatment. Do the math. Curious what lyme is and how to advocate for yourself? Visit lymedisease.org and get accurate information that can actually help you. This video is a shameful waste of funding.
- January 12, 2015 at 1:30 pm
We should email our senators and congressmen to make retired LLMDs head of the CDC.
- January 14, 2015 at 6:15 am
How many other diseases have been incorrectly diagnosed? We rarely hear about them unless it is a news worthy jury verdict, such as the 5 million wrongful death suit involving a 22 month old boy who was not diagnosed with Erlichiosis and then died.
My own diagnosis of Lyme and multiple other vector borne diseases was not diagnosed for 20 years- with a history of over over 100 tick infestations from the age of 5. I had positive bands, but did not meet the rigid criteria of the CDC and IDSA.
My test was inappropriately read as negative, a familiar story shared by millions worldwide. Instead, since the MD was not able to identify the “alien” that was causing a plethora of symptoms and swollen, painful joints , I was diagnosed with atypical RA, with no positive test to affirm the correct diagnosis. Over these years, I was treated with oral and injectable Gold, a cancer drug, oral and injectable steroids. Result: long suffering, a destroyed immune system, 17 joint related surgeries, 8 of which involved total joint replacements. ( Lyme Arthritis) Enter: a Lyme literate MD who did his very best to treat me appropriately, but the damage has been done and is irreversible. Disperse white matter lesions per MRI throughout my brain and joint and neuropathic pain that nearly drives me insane!!! Do you now understand my need to respond to this article!!!!
- January 14, 2015 at 9:34 am
At this stage of evidence-based articles by Lyme researchers being published by scientific journals validating chronic Lyme, one has to wonder what is the $/power reason behind scare tactics put out by a government agency. This smacks of IDSA misinformation. Connections? CDC officials go to work for IDSA ventures. 5 years to get highly redacted Lyme files from CDC? Why? IDSA doctors madly developing a Vaccine for a disease that they say is cured in 28 days. Why?
Compared to AIDS delayed action, or the 10 years it took for doctors to believe bacteria caused ulcers, Lyme has another component. Money? Power?
As Lyme victims, not only from the disease but also from the CDC/IDSA, we must keep up our vigilance, investigations, and exposure of the political sabotage until the truth comes out.
- January 16, 2015 at 9:09 am
I have seen many sites now where amateur lyme sufferers culture their own blood and get spirochetes. Some even stain them for borellia dna. Many of these people are “cured”, what more proof do we need that Chronic Lyme exists?
- January 20, 2015 at 4:23 am
I’m responding to the first two posters here. First, pj who asks if the pituitary tumor can be a result of borreliosis complex. In my case, I was supposed to have had a pituitary tumor, by all the testing the endocrinologists did, and when the brain surgeon went to look for it, he couldn’t find it, and told us I was a medical mystery. I had high prolactin, a pituitary hormone, and that’s why they thought I had a tumor. The prolactin level stayed high until I started to treat for Lyme disease and now it has dropped into almost normal range (tx have mostly been clindamycin abx, mangosteen – anti-inflammatory juice, turmeric – anti-inflammatory spice). I would venture to say that the Lyme bacteria probably caused his tumors and certainly caused my high prolactin pituitary hormone level.
For DeeDee – fibromyalgia is a catch-all term that doesn’t mean much by itself – it says we have pain in the fibers, along with what is known to be a syndrome of symptoms. My fibro of 25 years following a known tick bite in my foot, turned out to be Lyme disease, given to me by that tick. If you follow what Lyme patients are saying in general, in the film “Under Our Skin,” etc, many got diagnosed with the fibromyalgia catch-all term before discovering they had Lyme disease.
And yes, the CDC video stinks. It doesn’t even come to any reasonable conclusions, like what pj is asking about, which is, hey, couldn’t the Lyme bacteria be causing his tumor?
- January 22, 2015 at 6:41 am
Obviously, the CDC is in collusion with media conglomerates, the Department of Defense, and insurance containment “interests”. Many of lyme derivatives are patented, and patents are owned by the same persons as the one’s who control lyme panel testing kits. How convenient – and profitable… Here’s how VALID information is pasteurized, homogenized, and GMO processed for pubic consumption. The forth leg of government is just as corrupt as the government itself…
Obama appoints Monsanto shill Tom Vilsack to USDA chief
Did Tom Wheeler subvert Research Showing Harm From Cell Phone Radiation?
Julie Gerberding was in charge of the CDC the years the FDA approved Gardasil as a vaccine and is now the president of Merck’s Vaccine division, a $5 billion dollar a year operation. Gerberding resigned from the CDC on January 20, 2009, and is now the president of Merck’s Vaccine division, a 5 billion dollar a year operation, and the supplier of the largest number of vaccines the CDC recommends (article here).
And so it goes…
- January 22, 2015 at 6:56 am
How ironic that all of my numerous specialists thought that I might have a tumor on my pituitary gland. Only to find out that my MRI was clear. Many months later, hooked up to a heart monitor and unable to stop the weight loss, pain and intense suffering, I was finally diagnosed with raging Lyme and all major co-infections by a LLMD. – (blood positive by the way). Other drs said it couldn’t be lyme since I was given 30 days antibiotics and “cured.” I thank G** there are LLMDs to help us. I’m better because of it. How can the people who orchestrated this video sleep at night?
- January 22, 2015 at 10:25 am
Oh, and IF ONLY I had been properly treated for Lyme disease when first diagnosed (with a positive blood test) I would not be struggling with other serious health issues, including neurodegenerative injury clinically linked to this insidious disease. It’s time for the CDC to admit they’re idiots.
- January 23, 2015 at 2:57 pm
I was treated for acute Lyme in 2006 and 2008 and have had post-treatment (i.e. chronic) symptoms since then. In 2013 some skin eruptions appeared, which were eventually properly diagnosed as NXG (necrobiotic xanthogranuloma), which is so rare most docs have never heard of it. The CDC had zero info for it on their website and replied to my query that there was no evidence it’s associated with Lyme, though European docs report that it is. A new pathology analysis developed in Austria found borrelia spirochetes in my skin biopsies. The Europeans also note an association between NXG and the blood cancer multiple myeloma so I had to go looking for it. It was found in my bone marrow, where there is also evidence of spirochetes. Allopathic treatments plus holistic changes in diet and lifestyle are beating all 3 diseases back.
- January 26, 2015 at 1:28 pm
Aside from being very ill in a country richly blessed with medical institutions, technologies and modalities, brilliant medical intelligence, i find the actions and lack action of the CDC, which is ” to work 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same” a blatant immoral stance thwarting access to comprehensive health care thus violating basic human rights. Clearly, the powers to be have gone rogue against American citizens and deems congressional investigation.
- January 27, 2015 at 11:55 am
I wondered the same things. What about all the doctors who blew off his symptoms, or told him they’re “all in your head.” Why didn’t any of them run an MRI? Where is the public service announcement warning doctors to be on the lookout for brain tumors?
Also, how does an untreated pituitary tumor cause heart and kidney disease and joint damage without causing gigantism?
And I do agree with the words in the CDC’s statement that an incorrect diagnosis can cause permanent damage or death. I can’t even comprehend the tens of thousands of chronic tick borne disease sufferers who have experienced permanent damage or death from being incorrectly diagnosed with MS, fibromyalgia, chronic fatigue, idiopathic ________ (fill in the blank), etc.
- February 3, 2015 at 7:08 am
- April 6, 2016 at 5:26 am
I have permanent conduction damage called sick sinus syndrome, resulted of untreated acute Lyme carditis that resoled itself in weeks. Presence of borrelia and Lyme disease was diagnose five years later, with abnormalities in ecg (echo normal). Final cardiologist diagnosis: sick sinus syndrome resulted of bacterial myocarditis (Lyme).
No scare. FACTS! Diagnosed and documented! Its permanent and over time i will need pace maker.
- August 6, 2016 at 10:39 am
What gets me is if Lyme is so hard to diagnose yet there are people that were treated with IV antibiotic for a few months and then synovial fluid was taken from their joints and told they were cured, YET Bb was found in synovial fluid taken from their knees. Hmmmm, That sounds like the best way to truly test for Lyme instead of looking for antibodies. when are “we the people” going to hold the CDC, FDA and the governments feet to the fire!!!!??? I don’t understand how they can keep lying and nothing is being done about it. The proof is overwhelming!!! I have had Lyme for twenty years with only two weeks of antibiotics. . I have proof that the lone star tick carries Bb because I had the ticks tests that came off my body two years ago but Bb is only transmitted by the black legged deer tick so it says on the CDC website. Did the ticks get Bb from me, or did I get infected the second time two years ago?? Maybe a Synovial fluid biopsy could be the “real” gold standard of testing . May synovial fluid should be what they use to culture Bb in the lab since Bb lives the joint tissue, especially when chronic Lyme needs to be 100% diagnosed. I think the antibody test is what they use against everyone because it’s not proof the bacteria is there. If WE can prove it by actually seeing the bacteria then how can chronic, persistent Lyme be ignored!!!! The CDC, government and the FDA and the insurance companies are all murderers!!! We pay them to make us sick and do everything they can to deny us of our rights to get well!!! But they have bigger things to worry about like blaming birth defects on Zika virus when they know perfectly well that the birth defect is not from a virus. It’s from chemicals in pesticides. Google Zika virus for sale….. Watch Dr Bergmans video on the zika virus. He shows all the proof and then use your own common sense as to what the hell is going on!!! The CDC over reacts to a little virus and spreads panic when only a few people in the US have caught this virus yet they act like Lyme is nothing to worry about and it’s all in our heads!!!! thats my two cents…
- October 3, 2016 at 6:08 pm
I saw two infectious disease Doctors, one overpaid concierge doctor, and two dermatologists all of which said I did not have
Lyme disease. It wasn’t until I saw a Lyme specialist that used IGENEX laboratory that I was finally able to get on track to recovery.
I’ve been on a Lyme protocol for almost two months now and I’m starting to feel normal for the first time in almost two years!! I couldn’t believe it when my internist was angry that I consulted a Lyme specialist that used IGENEX. To this day he refuses to believe I have Lyme disease even though I am getting stronger every day. Time to get a new doctor!!
- November 29, 2016 at 9:58 am
Any Doctor that refuses to use IGENEX to test for Lyme should have their license taken away!!!!
- January 8, 2017 at 12:09 am
But don’t you realize this disease is the next aids. Its forced into our environment as a depopulation disease. They created it for this reason. This is why lyme literate doctor’s are losing their license for treating people in an an undesirable socioeconomic bracket. Thats why the hospitals that can cure it take no insurance. You have to pay for the right to live.
- June 22, 2017 at 9:40 pm
I have exactly the same symptoms as Robert and many more. In Canada Lyme is usually denied so my records will never admit it. They will only say may or may not. The fact that I owned several cats that brought home ticks and lived next to forests most of my life were never considered, nor was the positive Elisa test for Afzelli, Burgdorferi, and Garinii, because all Elisa tests, whether positive or negative are considered false. Positive tests are false positive and negative tests are false negative. Clinical signs are never used to diagnose Lyme — only tests. The fact that my Western blot test was equivocal for only Afzelli was also a suggestion I couldn’t possibly have Lyme. A reading positive reading from IGENEX IgG on bands 23-25, (one plus), 30 (1 plus) 31 (4 pluses) 34 (ind), 39 (Ind) 41 (2 pluses, 58 (1 plus) 66 (2 pluses) could also not be considered because the test was American and Canadian doctors are taught that IGenex are bad cats and only the CDC can be trusted. So that test had to be thrown out as well. The IgM was not positive, however. As you can see from all of these things, I couldn’t possibly have Lyme disease. I later also tested positive at IGenex for Bartonella and at Lyme specialists here for Epstein Barr and a couple of other things, but it was so obvious to Canadian doctors from all of these things I am telling you that I could not possibly have Lyme, right? I did get 2 weeks of Doxycyline 100 though, in spite.
All of this was like being told, you may or may not have a disease worse than syphilis so have a great day now ok?
At the time I had no knee problems which they believed would be necessary to have Lyme disease. I had only spinal and heart issues which obviously could not be caused by Lyme. I also had a growing pituitary tumour. Now I have very bad knees, hips, and shoulder joints on both sides. I will never be sent to a rheumatologist because my rheumatoid factor is low and Canadian doctors know, just know, that it is not possible to have rheumatism if your tests read low. From what I have read, the readings can indeed be low if the body stops producing antibodies but Canadians aren’t taught these things.
I now have developed a synovial cyst in the spine and my knees are extremely bad, but because I was never allowed surgery starting from five years ago, my heart seems as though it won’t take such surgery now that it was planned. I would have to have massive nuclear testing to the heart which can be the equivalent of 70 mammograms on top of Thallium poisoning in just two days, just to determine
if the knee and spinal operations are safe, Since the FDA updated their warnings about these tests killing people and they are indeed using Adinosine, I didn’t feel that the chance of dying twice (once from knee surgery if I didn’t have a heart attack from the stress test alone, which is common) was in my best interest, I refused having the heck blasted into my heart with radiation, especially since there are no limits to the amount of radiation being promoted in Canada and they will push it even in patients who have already had excessive radiation. My mother died from angiosarcoma (from too much radiation herself) and they just stated on TV the other day that one in two Canadians will develop cancer, my instincts told me that with a bad heart and all of these conditions, it would be better to not take medical advice and use instincts instead. I would be dead if I took this test, if not right then and there but within 2 years so didn’t want to trade off my heart for the ability to walk well. I will have to spend the rest of my life with sciatica and using a walker and will continue to end up in hospitals many times because doctors know that none of these things could possibly be related to Lyme. They just know it and you don’t question what doctors know, When you probably don’t have Lyme this also means they will never ever follow you up with regard to that disease. Doctors want to keep their jobs and insurance companies today control what they can and cannot do.
Of course I also developed cancer since my lymph nodes swell up all the time. Hey, why wouldn’t a constantly inflamed body cause cancer? My body is in tremendous pain but doctors know that all of this is just i the mind. The CDC is always right so no matter how many Lyme patients come down with this, it doesn’t matter.
I know I will die from Lyme. After a few cortisone shots to the knees it got very much worse and they were going to give me a cortisone shot to the spine, but luckily I brought my car so they refused. It was a good thing I guess because I read that cortisone shots to the spine could kill a Lyme patient.
Like many Lyme patients I know they will simply let me die. Remember, I had no knee problems at all when this happened but the Doxycyline a few years ago never worked. Obviously it was too weak. Because most doctors can’t stand Lyme patients because they come down with everything and are in their offices all the time, like most Lyme patients, the best thing to do is just learn to accept death. The costs for medicine, of course, can never be deducted unless people are rich, so there’s no point in trying to go too far in treating it yourself either. Lyme patients must learn to put up with tremendous abuse, mockery and much more, but you know what gets me most?
If this is not Lyme, why have I never been tested for MS, which I already thought I had years before I asked to be tested for this after coming down with so many serious problems? Why would doctors not be scared to death world wide, and working very hard to find out what disease could be so horrid, instead of taking a lackadaisical attitude toward it? I think they know it’s Lyme — all of them, but again, they want to keep their jobs. Too many have lost them for getting involved in something as foolish as trying to save patient lives. I think Lyme, Malaria, Zika, Malaria, and Syphils may all be directly related and I also suspect that most people may have actually contracted this through the live SV40 polio shots (that they originally thought were dead) that millions of people were given in the 1950’s and 1960’s which were contaminated with at least 40 different cancer causing viruses, sexual type diseases, and of course Lyme would also have been one.
No one will ever prove this however, because Drug companies have protection from government and they can’t be sued even if they kill millions. One does indeed have to ask, however, if they are so confident in the safety of their vaccines, why did they have to approach government to be granted such protection in the first place?
Did they even think about what might happen when they injected viruses from RH-esus positive monkeys into RH negative people and do they think of that sort of thing today as they continue to inject all of us with shots mixed not only with mercury, but caterpillar cells, chicken cells, and as of late in flu injections, even dog cells? They haven’t even figured out why the body rejects certain organs. How could they know if mixing human and animal cells could be at all harmful? When even the bible tells you to not eat animals without hooves, might it also mean that people shouldn’t be injecting dog cells right into their bloodstreams? I suspect that much of this may be done to lower the age of most people overall, so that they only live until it comes time to collect the pensions they have paid into all of this time, and then they will suddenly plop dead at 65. I don’t much trust modern medicine at all anymore. Do you?
- July 3, 2017 at 10:12 am
Yes chronic lyme causes no immunitu so great chance of getting cancer. Does the CDC really think people are that stupid and naive. I know I am not.
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