There have been a plethora of articles lately about Chronic Lyme. Some even have actual real newsworthy NEWS. But not this one.
I don’t know if these writers were last in their class, have a bad editor who chopped out all the real (updated) info, or WHAT, but most of them have embarrassingly outdated info on Lyme Disease. The average reader, even medically inclined, is not going to know all that has gone on in the Lyme research world in the last 20-30 years, and one wouldn’t expect them to, but one weird “side-effect” of the unbelievable increase in amount of tick-borne disease (TBD) patients out there is that your average reader may soon understand how awful this article really is. So I think these writers might want to step up their game.
For now, it’s up to those of us who see the glaring errors to point them out to others and hope they learn from them. (I’m not holding my breath).
Here is the article in full with my comments below each section.
“Every day for the past few weeks, John Aucott has diagnosed at least one new patient with Lyme disease.
It is prime season for the tick-borne disease in many parts of the East Coast, including Baltimore, where Dr. Aucott is director of the new Lyme Disease Clinical Research Center at Johns Hopkins University School of Medicine’s division of rheumatology.”
Started out okay. Probably should have stopped there and been done with it, but I’m guessing the boss wouldn’t have been ok with that.
“For most people, Lyme disease, when caught early enough, is resolved after two to four weeks of treatment with antibiotics. But for as much as an estimated 10% of patients treated for the disease, symptoms, such as severe muscle and joint pain, fatigue and cognitive difficulties, can last for months or even years. The condition is called post-treatment Lyme disease syndrome, or PTLDS, and experts are divided on what it is, what causes it and how best to treat it.”
While many places MAY quote the first part as out-and-out fact, it is far from it. It is old, outdated, and laughable given what we now know about Lyme/TBDs. I may let slide the fact that about a week before this article came out there was breaking news about the immune system and Lyme and also, about a month earlier, amazing results on research about persister cells and Lyme, as this article MAY have been written before that and only published on the stated date. But just imagine if the writer had this new, really interesting breakthrough in her article! Isn’t that sort of what journalists go for…news?
“We’re at the primitive stage with that group of patients [with PTLDS] because we don’t have accurate biomarkers or blood markers to gauge what’s driving the disease. And there’s no FDA-approved therapy for those patients,” Dr. Aucott said. For the Lyme disease research center, which opened in April, “the mission is really to focus on the complex issue of chronic Lyme disease.”
This is a quote, and one the journalist should have paid better attention to. Primitive. Meaning very early stages. If this disease has been around a while, some more advanced journalists might want to find out why the research is so primitive. And why Gary Wormser, for example, is soooo sure no more antibiotics are needed and this is just simply people whining about everyday aches.
“Lyme disease is the most common tick-borne disease in the U.S. There are an estimated 300,000 new cases a year, about triple the rate from two decades ago, said Paul Mead, chief of epidemiology and surveillance activity for the Centers for Disease Control and Prevention’s Lyme-disease program. Most cases are centered in the Northeast, mid-Atlantic region and some north-central states, including Minnesota and Wisconsin. It is transmitted by the blacklegged tick, also known as the deer tick. On the West Coast, where it is less common, it is spread by the western blacklegged tick. The disease was named after a cluster of cases that broke out in Lyme, Conn., in the 1970s.
Close but not quite. There are several reliable sources that state that not only can Lyme be transmitted by a tick, but also by mosquitos, fleas, etc. This isn’t hard info to find. I swear there is one card with a blurb about “Lyme info” on it from 1996 floating around out there that all journalists with IDJIT use in their “articles.” Common sense alert: In a hard to diagnose disease (see primitive quote), wouldn’t it be harder to count or track which states it is really in more than others currently?
After a tick bites a person, it generally must stay attached for at least 24 hours for the bacteria that causes Lyme disease, Borrelia burgdorferi, to be transmitted.
Wrong. And dangerous. This old, outdated “fact” needs to just stop being repeated. Truly.
Most infections are caused from the bites of tiny, immature ticks called nymphs, which typically feed during the spring and summer. Symptoms, which usually set in after a few days or as much as a month, include headache, fatigue, fever and a gradually expanding circular rash that sometimes has a bull’s-eye appearance.
KUDOS to the SOMETIMES wording here. I’ll take back the previous ding for this one. A picture would have been helpful, and BOLD HUGE PRINT for this fact that so many get wrong. But good job on this.
Left untreated, Lyme disease can spread to other parts of the body and cause arthritis-like joint pain and inflammation, facial paralysis, an irregular heartbeat and cognitive difficulties.
And a list of over 100 other possible symptoms including that “irregular heartbeat” that can kill you…
Experts aren’t sure why symptoms persist for some patients long after they have been treated for Lyme disease.
Let me just add that many chronic Lyme patients (incorrectly called PTLDS) were never treated for Lyme. EVER. But they get put into this category so whatevs, right?
No, experts are not sure. Some, like the IDSA and the CDC will act like they know. They have said over and over that this is a hard to catch, easy to cure disease.
Those who really want to learn about what is going on are finding out more about the truth of what this nasty bacteria is doing. This would have been a great place to put in the new persister cells research and/or the new immune system findings in Lyme. Instead, we get Paul Mead, personally a BIG reason Lyme and other TBDs are as much trouble as they are these days. He knew long ago this was a huge issue. It is out of control. We are so behind in research it is inexcusable. Many experts place the blame on his shoulders as well.
“Some believe it is the result of residual damage of tissues caused by the disease, while others think it is a post-infection complication of the immune system, said Dr. Mead. Another theory: PTLDS may be caused by a lingering bacterial infection, leading some doctors to recommend long-term antibiotic use.”
Here’s a good thing to ask at this point: Why can’t some “experts” *Dr. Mead* understand that it could be both? At once. Yes, an insidious bacteria being able to become stealth, lying low and coming back (persisting), AND tricking the immune system into attacking itself? WHAAAT? The concept is just so crazy I may be onto something, right? 0___0
These are things the journalist couldn’t have really known, I suppose. But that just proves a journalist needs better sources than an index card of old “facts” written on it. There are so many out there.
“In a study led by Dr. Aucott, scientists at Johns Hopkins have been tracking about 150 patients with Lyme disease to see who continues to suffer from symptoms after treatment and who doesn’t. One focus has been to figure out how the body’s immune system is triggered when confronted with the Lyme disease bacteria, says Mark Soloski, an immunologist who is co-director for basic research at the Lyme Disease Clinical Research Center. By studying the patients’ blood and tissue samples, the researchers believe they have discovered a candidate biomarker that may help distinguish which patients are at risk for developing PTLDS.
This marker that we see that’s elevated suggests to us that the immune system is still being triggered in these individuals,” said Dr. Soloski. “There’s some immune process—we don’t know what it is—that’s still going on.” The research team is currently writing up its findings for publication.
Medical guidelines for diagnosing and treating Lyme disease don’t recommend any particular treatment for PTLDS, largely because it isn’t clear what causes the condition, says Gary Wormser, who chaired the Infectious Diseases Society of America committee that wrote the 2006 guidelines. ”
Almost 10 years ago. Really? Why even add this at all? And you didn’t think to see if there was something a little more up-to-date than The Worm? Now that is just bad journalism right there. We don’t know what cause a lot of things, but we have treatment for them. And if some work better than others, we usually are going to those doctors, right? Yea. That didn’t work out so much for Lyme. I suggest you do your homework and find out why.
“In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection,” the guidelines say. “Put simply, there is a relatively high frequency of the same kinds of symptoms in ‘healthy’ people.” The guidelines are currently under review for revision.”
This quote is one of those things you put in your article if you don’t know any better or just want to piss some really sick people off OR, I suppose, are really cruel and like to mess with sick people. Did you actually read this before you plopped it in here? People why have been treated for Lyme but have any persistent symptoms, including dying, are cry-babies. In addition, at the time of these guidelines, they knew the last sentence was incorrect. If there were doctors withholding treatment they knew would be beneficial, they would be in jail. How these guys are still getting away with it astounds me. And still being quoted in articles as if they are experts is truly a sad statement on how much patients have put up with so far.
“For patients with persistent symptoms, the guidelines recommend against long-term antibiotic therapy, largely because of the public-health threat from antibiotic-resistant organisms, says Dr. Wormser, who is chief of infectious diseases at New York Medical College in Valhalla, N.Y. “We don’t recommend prolonged or repeated courses of antibiotics for post-Lyme disease syndrome,” he said. “There’s no convincing evidence that they are actually beneficial.” ”
Just a note here about the content: When one takes antibiotics that are not needed, true, it can contribute to antibiotic resistence. However, wouldn’t this make an ID doctor want to better tailor antibiotics to get rid of an infection/symptoms and not just say– nope. no more antibiotics for you ? What other infection is this done for? None. Zip.
**Side note: Now, I suppose it could be the writer had some facts about Dr. Aucott’s study and someone said– fill this up with some crap! I don’t care if it’s old! I understand these things happen. I don’t condem any writers unless they are constantly giving out bad information about Lyme/TBDs after being given all the info to do their own additional research to then make it right or issue a correction.**
“Still, some doctors, patients and Lyme advocacy groups say long-term use of antibiotics is the only way to manage the condition for some people.
Sherrill Franklin, who lives in West Grove, Pa., has been on antibiotics on and off for five years to help manage her chronic Lyme disease. The 63-year-old contracted Lyme disease in 2008 and a doctor prescribed seven days of antibiotics. Several months later she started experiencing muscle aches, vertigo, sweats and extreme fatigue. “As the weeks and months and years went by I thought I would have to let go of my business,” said Ms. Franklin. “I was housebound for all practical purposes.”
Ms. Franklin has seen various doctors over the years. She started taking antibiotics in 2010, which “help manage the condition,” she said. “It’s not curative, but helpful.” About six months ago she also joined Dr. Aucott’s study and is hoping it will help provide answers for why she and other people she knows still suffer persistent symptoms.”
And there it ends. I was sort of wondering where the rest was. That’s it …
So given all the non-researched bits, the overall weird jigsaw-ness to the article, and the fact it left me wondering why it was slapped on the interent at ALL … leaves me to diagnose this writer *or editor as instigator* with a possibly curable case of I.D.J.I.T. Don’t worry. There are so many with this quickly spreading disease, you could start a support group. It is pretty easy to cure, however. Find better, more complete sources, especially with complex health issues. These are patients, you know, PEOPLE, you are talking about. You need to be extra careful. This is why there is a code of ethics, after all. And, if nothing else, imagine there were internet journalists back when AIDS/HIV was a new thing, and they kept saying how one could get it from just touching another, or that women couldn’t get it because the guidelines said so. Such Lyme articles in a few years will be looked on with such disdain as those would have been. And they’ll be around FORVER to haunt you.
Now that’s something that would suck.