If you grew up, as I did, a child of the 1970s in the US (I graduated from high school in 1980), you probably couldn’t escape the influence of Kris Kristofferson. He was big, and he was at his biggest during the 1970s, pumping out country music and mainstream hits, appearing in movies, and generally rocking an awesome beard. Anyway, the 1980s came, and Kris Kristofferson’s career went. Well, it didn’t exactly disappear. Kristofferson continued to work and appear in movies, and his records still sold fairly well. However, he was never again as big as he was in the 1970s.
It turns out that Kristofferson’s 80 now and not in the greatest health. It also turns out that he’s also totally in the thrall of chronic Lyme disease quackery, becoming the latest celebrity I’ve learned of who has fallen for quackery. It is a sad tale indeed, as it started out with Kristofferson being diagnosed with Alzheimer’s disease because he had developed memory issues. That turned out to have been a misdiagnosis, but the diagnosis that replaced it was scarcely better because it is a fake disease much beloved by naturopaths and "integrative medicine" practitioner. I learned about his story the other day from a blog post in The Huffington Post (which, not surprisingly, was quite credulous about the chronic Lyme disease quackery being used to treat Kristofferson), which referenced a Rolling Stone article (which was scarcely better).
The Rolling Stone article describes how he was diagnosed. After describing his problems with memory loss, which doctors suspected to be due to either head trauma he suffered in his youth playing football and rugby or boxing or due to early dementia, possibly Alzheimer’s disease.
Then, earlier this year, a doctor decided to test Kristofferson for Lyme disease. The test came back positive. His wife believes he picked it up from a tick as he crawled around the forest floor in Vermont for six weeks while filming the movie Disappearances.
"He was taking all these medications for things he doesn't have, and they all have side effects," she says. She is wearing one of her husband's tour merchandise shirts. After he gave up his Alzheimer's and depression pills and went through three weeks of Lyme-disease treatment, Lisa was shocked. "All of a sudden he was back," she says. There are still bad days, but "some days he's perfectly normal and it's easy to forget that he is even battling anything."
The Rolling Stone article is a profile that’s more about Kristofferson's more recent career, kind of a "portrait of the artist as an old man," than about his health problems and treatment for chronic Lyme disease, which make up only a relatively small part of the article. It’s the HuffPo blog post that features a long interview with his wife Lisa Kristofferson, who appears to be the origin and ongoing source of much of the woo and is described as “fierce” and “intuitive.” She starts out describing how her husband was diagnosed with fibromyalgia 12 years ago, which she now blames on Lyme disease and suspects “he’s been infected with Lyme anywhere from fourteen to thirty years because he used to have these chronic muscle spasms, which is a common symptom,” which is odd, given that she blames the movie Disappearances, released in 2006, for her husband’s Lyme because he spent a lot of time being dragged in a sling across the forest floor because his character had been shot in the leg. She thinks he was bitten by a tick then.
In any case, she elaborates:
During the aftermath of that film, Kris was diagnosed with moderate to severe sleep apnea, warranting a bi-level CPAP machine, which he tried and refused to use. He had painful knees and annual knee shots, a pacemaker for arrhythmias- which we now know could be from Lyme- so much Advil for headaches that he got anemic. After a year of iron supplements and seeing a hematologist, he just wasn’t healthy-looking so I took him to an integrative doctor, Mark Filidei, at Whitaker Wellness Institute. Upon examining Kris and watching the muscles in his forearms constantly twitching, he announced, “He’s got Lyme Disease,” and ordered a blood test. The first test from LabCorp came back suspicious, the second test by IGeneX was positive. This was in February 2016.
There are so many red flags here that it’s hard to know where to start. The very first (and biggest) red flag is that Kristofferson was diagnosed at the Whitaker Wellness Institute. Julian Whitaker, as regular readers might remember, is an all purpose “integrative medicine” doctors very much enamored of a whole lot of quackery. For instance, he’s rabidly antivaccine and has used some incredibly idiotic arguments (such as that all children will be born autistic by the 2030s, thanks to vaccines). He’s also promoted the quackery of Stanislaw Burzynski, appearing in one of Eric Merola’s propaganda movie about him.
Before I move on, let’s talk about chronic Lyme disease for a moment. It is, as I and others like to call it, a fake disease. This has to be differentiated from real Lyme disease. Yes, Lyme disease is real. There does even appear to be a post-Lyme disease syndrome, which is seen in patients who had Lyme disease and now have chronic symptoms (such as fatigue, various pains, and difficulty concentrating) after having been treated. Indeed, this is even referred to as category 4 Lyme disease. What causes this syndrome is a mystery, and there is no doubt that there are patients out there with debilitating symptoms after being treated for Lyme disease. However, current scientific and clinical evidence does not support the idea that these symptoms are due to a chronic ongoing infection or that prolonged courses of antibiotics, the preferred treatment for so-called chronic Lyme disease, do any good. Steve Novella has written a good treatment of the issues involved (here and here), as have Mark Crislip and Peter Lipson.
An excellent article in Environmental Health Perspectives concludes:
Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, “chronic Lyme disease,” has become established. Chronic Lyme disease is the most recent in a continuing series of “medically unexplained symptoms” syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.
The article is useful because it describes how the chronic Lyme disease (CLD) diagnosis evolved and why patients with unexplained symptoms embraced it, as patients with unexplained symptoms have embraced Morgellons disease. Unfortunately, the result of the rise of the CLD industry has been quackery, as PJ Baker, the executive director of the American Lyme Disease Foundation, wrote in Federation of American Societies for Experimental Biology (FASEB) Journal:
There is no better example of a relentless attack on evidence-based biomedical research and the integrity of outstanding scientists than that associated with the treatment of a poorly defined condition called “chronic Lyme disease.” Here, a scientifically naive general population, the lay press, and legislators, who in most instances are unable to evaluate and judge scientific evidence properly, have been misled by patient advocate groups to believe that extended antibiotic therapy is the best and only solution to this condition. This has resulted in the unprecedented intrusion of government and the legal systems into the practice of medicine and scientific research. Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit.
Basically, a whole alternative medicine/”integrative medicine” industry has sprung up to use bogus tests to “diagnose” chronic Lyme disease and and bogus therapies to treat it. They’ve become so powerful that some state legislatures now kowtow to them, as Connecticut’s did recently when it protected quacks’ ability to treat CLD patients with long term antibiotics. Not surprisingly, the Whitaker Wellness Institute has a full page of glowing testimonials for its treatment of CLD with intravenous vitamin C, glutathione, hyperbaric oxygen, low dose naltrexone, and various other alternative medicine treatments.
Naturally, it didn’t take long after Kristofferson was “diagnosed” with CLD for the quackery to flow. For example, Lisa Kristofferson describes what she and her husband did after they got the “diagnosis”:
Well, we got the news when we were on tour in the UK and Ireland, so immediately upon landing in the US, I went to a local pharmacy and picked up Kris’s prescriptions for Doxycycline and Alinia. Soon after, we also started Hyperbaric Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe.
At this point, did anyone refer you to a Lyme-Literate doctor?
Yes, luckily, Kris’s cardiologist did her residency in New Jersey so she understood the cardiac involvement in Lyme and said go to a Lyme specialist. We began working with Dr. Steve Harris in California, who added antibiotic intramuscular injections to Kris’s protocol and is continuing to treat Kris.
Of course, there is no good evidence that HBOT treats Lyme disease, whether CLD or acute, nor is there a good physiologic rationale for it. As for TMS of the frontal lobe? What’s that about? TMS is a treatment that’s not used for Lyme disease, but rather depression. As for intramuscular injections of antibiotics, in the absence of an actual infection such treatments will do nothing but devastate Kristofferson’s natural bacterial flora, particularly in his gut, and breed resistant bacteria.
As for the diagnosis:
But before this, wasn’t Kris misdiagnosed with Alzheimer’s?
Yes, for the past three years, he was treated for Alzheimer’s by two different neurologists. He was on two drugs for it, Namenda and Exelon patches. But finally, a spinal tap and functional MRI ruled out Alzheimer’s, so he quit those meds and the antidepressant for fibromyalgia. They also tested him for Lyme Disease in the spinal fluid and it was negative but the doctor explained to me that Lyme does not live in fluid, it lives in tissue. It bores into tissue so you would really have to do a biopsy of the brain to find it.
This is, of course, nonsense. Lyme disease is routinely diagnosed using serum with a combination of an enzyme-linked immunoabsorbant assay (ELISA) followed by a confirmatory Western blot. The reason for the whole industry of dubious tests for CLD and claims that it’s not in the blood is because there is no Lyme disease in CLD. It’s why labs specializing in CLD diagnosis use PCR to diagnose the disease when PCR is not a reliable means of diagnosing Lyme disease and is not FDA-approved. It is a fake diagnosis, and Kristofferson’s being victimized by quacks promoting it.
Why, you might ask, is Kristofferson seemingly better? I rather suspect that it’s because he’s off all those Alzheimer’s treatments. It might also be because he’s off his antidepressants. Maybe he neer had depression requiring treatment. Whatever the reason, we can be quite sure that HBOT, intravenous vitamin C, TMS, intramuscular injections of antibiotics, and whatever other quackery Kristofferson is undergoing are not responsible.
Of course, the problem with celebrities falling for quackery is this:
With over five million Americans living with an Alzheimer’s diagnosis, I have to wonder how many actually have Lyme and not Alzheimer’s, and what it will take for doctors to look for Lyme before giving someone a sentence like that. Malpractice suits? Complaints to medical boards?
Sadly, the average doctor doesn’t even check or test for Lyme, it’s not the norm. But they should! And now, with treating it, Kris is doing so much better than he was three years ago. I couldn’t even get certain doctors to look at his blood test and agree it was positive. But once he got his clinical assessment from his Lyme doctor, they all seemed to finally agree. And then we got him off all the Alzheimer’s meds and it was like, “I’ll be damned!”
That’s really unusual and wonderful. Certainly, that was the opposite of my experience.
Yeah, what’s that about? Again, I just don’t get it. People are coming up to us all the time now with their Lyme stories and it’s just so tragic! Doctors are not looking for this and then people end up down the road so much sicker. It’s heartbreaking. I am fortunate my doctors are willing to admit when they are unsure about something and have Kris’s best interest at heart.
In other words, Lisa and Kris Kristofferson are now advertising CLD as a disease and CLD quackery. Indeed, this HuffPo piece reads, more than anything else, like a late night infomercial for CLD quackery. I’m glad that Kris Kristofferson is doing well at age 80 and is doing better than he was a few years ago. I’m not happy that his story is being used to sell the fake diagnosis of CLD and the even faker “therapies” to treat it.
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With HuffPo, you have to differentiate between their articles and blogs, the latter of which apparently anyone can write. In this case, singer songerwriter Dana Parish has been evangelizing for Chronic Lyme on her HuffPo blog for some time.
She tells the story in another entry, which shows that she appears to have doctor shopped in order to receive her Chronic Lyme diagnosis.
Parish says she was diagnosed with Lyme after a 10 minute interview in a visit to a "Lyme literate" doctor in San Diego . Then she flew back to the east coast and was treated by a quack named Steven Phillips, who appears in a recent interview with her with Fox 5 NY. (The general manager of Fox 5 NY believes his wife has Chronic Lyme and is on the Board of Global Lyme Alliance. He apparently ignored every journalistic standard in the book by having his station report credulously on Chronic Lyme.)
And let's not forget the debilitating effects of his "moderate to severe sleep apnea", which he refuses to treat and in itself explains a number of symptoms, notably: fatigue, pains, difficulty concentrating.
It certainly won't help his heart problems either.
It is a good thing I read that article after reading yours Orac, as my residency and fellow in ID and PhD in Pathogenic Bacteriology never prepared me for this! I wonder what else Huffington's and other non medical publications can teach me. Why next they will be saying vaccines don't work!
I rather suspect that it’s because he’s off all those Alzheimer’s treatments. It might also be because he’s off his antidepressants.
From my experience in my twenties, antidepressants can cause memory problems.
There was the famous occasion when I left my library card in my car, only to get to the car and having forgotten why I had returned, only to be reminded upon my return to the library.
About 5 bstard times, in a row!
Kind of puzzling to me, how you could diagnose someone as Alzheimer's, whilst they are taking anti depressants?
Bit like diagnosing someone as CJD whilst they're drunk lol.
Question: If "Lyme does not live in fluid, it lives in tissue," why did this doctor, who made a diagnosis on the basis of twitching muscles, order a blood test?
I suffer (and I do not use that word lightly) from severe sleep apnea, and was unable to tolerate any of the 5 different masks I've tried - for various reasons. Therefore, no CPAP. The resulting exhaustion, and other physical symptoms are no mystery to me. I know they're from the apnea, not from some mysterious CLD.
I wonder why those who diagnosed Lyme are called "quack", while the article does not question what happened with the Alzheimer diagnosis : so this guy received treatment for Alzheimer, which apparently scientifically sound medicine later ruled out. This made him feel worse, for bad reasons. Maybe that was bad luck, not quackery. But at least, this appears to be a factual mistake with adverse consequences. Were't these worse than what happens with Lyme ?
Being treated with a plethora of potentially harmful drugs and treatments for a condition that does not exist, sounds worse to me that being treated with potentially harmful drugs based on misdiagnosis of an actual disease.
Apologies for O/T, but the guardian has a nice piece by a British veterinarian on a letter from 1000 vets against the use of homeopathy for animals:
I'm well aware of how HuffPo works, having been writing about its quackery for over 11 years now:
Also, not just "anyone" can do a HuffPo blog. While most HuffPo bloggers are not paid, you do have to be invited by a HuffPo editor to do a blog. Since early on, HuffPo has featured bloggers who are woo-inclined, be it antivaccine, pro-homeopathy, etc. So it's not surprising that this blogger is into CLD.
True fact: I was once offered a blogging gig on HuffPo by an editor who, disturbed at all the quackery, wanted to balance it. I'm not sure how serious he was, because I said I'd think about it and the e-mail exchange petered out after a couple of rounds.
I've had the misfortune to suffer through a few different bouts of Lyme (one was even gotten right outside Lyme, CT).
Each time, I displayed the classic symptoms & received the recommended course of antibiotics.
As such, I'm Lyme-free (hate ticks though) and understand the difference between real science and quackery.
“fierce” and “intuitive.”
Add alcohol and you have the trifecta of elements common to every bar fight. Fierce and 'gut instincts' are not found together in any reasonable individual.
"[The cardiologist] understood the cardiac involvement in Lyme and said go to a Lyme specialist. We began working with Dr. Steve Harris in California,"
Interesting that they didn't seek a "Lyme specialist" in the northeast. California is no hotbed of Lyme.
At least KK having regular-old-Lyme seems plausible. A lot of the celebrities who have "chronic lyme" seem like the sort who haven't been within 100 yards of a tick in years, who don't walk their own dogs and don't go hiking, and don't do their own yard work. Like, the only way they could catch lyme disease is if it were transmitted by botox injections and hair extensions.
Just yesterday in the new we had the story of Marion
Suspiciously similar but even sadder because she is so young.
iPhone seemed to swallow of of that post.
I'm referring to news of Marion Bartoli.
And that one!!!
I'll stop now and see what it does to this one.
From the news story I linked to;
"Bartoli added that she needs gloves when she uses her mobile phone as the virus has caused severe electro-sensitivity."
Red flags there that would be visible from space!
Henry@6: There is a distinction between Lyme disease and chronic Lyme disease. The former is a real tick-borne disease, named after the Connecticut municipality where the first known sufferer lived. The latter is a quack diagnosis. The quacks are counting on people not noticing the distinction. They are justified in thinking that most people won't notice the distinction: in most cases where the adjective "chronic" is used, it's a modifier indicating a long-term form of the condition so described. But that's not true of chronic Lyme disease, which describes symptoms allegedly resembling Lyme disease but not actually caused by Lyme disease.
The reason why antibody-based tests do not show the presence of Lyme disease is because the Borrelia is sequestered in nematodes which protect it from the immune system.
Every case of Alzheimer's Disease and multiple sclerosis examined by this new test has found the Borrelia-infected nematodes in brain tissue samples.
Orac beat me to it. Alan MacDonald looks for all intents and purposes to be a nut. He's been kicking this idea around for a decade. He appears on 8 indexed papers on Pubmed, 7 of those papers about the purported Lyme:Alzheimers link. He is the sole listed author on each of those 7 papers.
As to the notion that nuts aren't asked to testify before Congressional committees, I'll assume that you're joking.
Orac has already asked most of the good questions but I'll add one: where are the other researchers drawn to his work? Where are the researchers citing his papers in their own work? It is one thing to be a maverick, another to be standing alone with your face inches from a wall, shrieking about little round cysts. MacDonald has made a bold claim. Let's see some bold evidence that supports it.
Alan MacDonald is one of those "Lyme-literate" doctors. In fact, he's a big name in the CLD movement.
Of course, one notes that he only describes brains with Alzheimer's disease and MS. What is his control? How frequently does he find these "Borrelia-infected nematodes" in normal brain? My skeptical antennae are twitching mightily right now.
MacDonald testified before a Congressional committee. That wouldn't happen if he was just some kind of crank.
It doesn't matter who MacDonald testified before. It matters what his controls are.
And really, "has testified before a congressional committee" isn't really a defining characteristic of competence. I mean, pharmaBro testified before Congress.
@Mark Thorson #20, you obviously have failed to note who frequently gets to address Congressional committees. Many a crank has addressed various committees. Some, multiple times.
Politicians love to be popular, indeed, that is a preferred condition than that of being on the right side of facts.
HAHAHAHAHAHAHAHAHAHA *gasp* HA he hee hee heh.
That's a good one! Tell us another joke!
I think Mark Thorson was being ironic.
The interwebs would be easier to interpret if we could all agree on a typeface for irony/sarcasm.
Though the really drily ironic would still not use it.
BSM, I don't think he was kidding. Taken in tandem with his first comment, I suspect he was dead serious.
Good irony, like a good martini, must be served very dry. A different typeface would be like adding coke to fine gin.
Bwahahahahahahaha. I hope you're joking or being ironic or sarcastic, because if you're serious you are sadly misinformed about Congress.
Mark Thorson would need to answer for himself really, but I followed the link he gave and this is his first comment on that page;
All his other comments on that page are consistent with that.
Crud. I missed that one. Makes the rest all the better :-)
Mark Crislip would call this a test that "stinks on ice".
I suspect Mark Thorson is being ironic
the Borrelia is sequestered in nematodes which protect it from the immune system.
At last, someone has found the missing part of the Morgellons life-cycle!
How could a shape shifting reptile* contract Lyme disease anyway.?
*According to David icke - not sure why he singled him out.
If there were nemotodes in brain tissue (or in any tissue) you would be able to see them on MRI.
What are the chances that a random tick bite could not only infect someone with a certain type of bacteria, but also with a nemotode that the bacteria can hide in? Nemotodes are typically not germ-free. If nemotodes were crawling around inside, wouldn't they also shed bacteria and cause local inflammation?
Sleep apnea and insomnia are classic symptoms of neuroinflammation. If he had sleep apnea that preceded his travel to Vermont, it is probable that the stress of being on location made it worse (as does any kind of "stress). :(
MA, you know of course that the reptolizardoploidians come from a planet so much similar to ours that they have spacefaring CNS nematodes concealing Borrelia. In fact, they probably brought it with them to turn us all into chemtrail-controlled sheeple.
I suspect that "nematodes" in this context have become semantic tokens well adrift from their real existence as metazoan creatures that, even if small, would have shown up well before now on histological examination of Alzheimer's brains.
Chronic Lyme Disease has gone on that same journey, I think.
[More autocorrect entertainment: My iPhone wanted to render 'metazoan' as 'me taxicab', which sounds like a line from a timely modern reworking of Tarzan]
Mark Thorson would need to answer for himself really, but I followed the link he gave and this is his first comment on that page;
That comment thread is a literary masterpiece. Mark does a great job of winding up the matchbox-sign loons, and the topic soon veers onto the evils of vaccines and the authoritative nature of OMICS journals.
Dr MacDonald claims membership of an "Academy of American Pathologists". This does not appear to exist outside of the press releases that are his preferred medium for reporting his brain-nematode-related discoveries.
While people with claimed chronic or actual Lyme disease may not be dying like flies, people with Alzheimer's disease are. I know of several instances in recent years. If a call went out from legitimate researchers seeking necropsy specimens of brain and/or spinal cord tissue, I doubt if there would be much difficulty in getting hundreds to thousands of specimens in a pretty short time. Some people might resist having the usual lop-off-the-top and take-out-the-brain performed on their deceased loved ones, but I suspect even they might accept bore-hole sampling. (q.v. Eraserhead). Anyone who has witnessed the ravages of AD is likely to be sympathetic to efforts that might benefit others.
Of course, if nematodes really are the problem, sodium chlorite is clearly the remedy needed. I can picture clinics offering intrathecal injections of MMS springing up all over the place. Where'd I put that box of spinal needles?
Or maybe Rife-Clark machines - give dem woims royal hulda.
Of course, if nematodes really are the problem, sodium chlorite is clearly the remedy needed.
Rest assured that Humble and the rest of the MMS scum are indeed bruiting Dr MacDonald's discoveries around, as one more reason to poison oneself, though they don't seem to have ventured into intrathecal territory yet.
The TMS is probably what's helping Mr Kristofferson's depression. It could be that his doctors took him off the antidepressants and tried that, successfully, completely separate from the Lyme stuff, and he and his wife have conflated it.
It has come to my attention that there are certain people -- possibly acting in concert -- who claim I have a very dry sense of humor. I'm compiling a list of these people. After I become dictator, they will be so so sorry they said that about me. Things will go well for you in the future if you report any instances of people saying that about me.
This is really sad. I so would have with a 70s Kris, had I been appropriately aged. Such an awkward sentence, but yes. Brains, looks, talent, sigh.
It's not going to stop at people who append "Enter your name..." to their identities?
A bit off the topic chaps, have any of you had trouble posting comments on "Natural News"? I tried to post a few comments and have had most removed as spam.
I wouldn't be surprised. A classic treatment for refractory depression in the elderly is electroshock therapy (in its more humane, modern incarnation, under anesthesia). But recently, TMS was shown to be as effective and with less side effects. Kris's doctors would probably have suggested that, at some point. And treating successfully his depression would also have ameliorated insomnia, hence his general state of health.
How does one go about getting TMS, anyway? A dear friend has depression and none of the meds she's tried have done her much good.
This whole story has echoes of many 'success' stories of cancer being treated with alt.med. conveniently forgetting to acknowledge the role of conventional treatment, often surgery for cancer, that is the real reason for the patient's improvement regardless of how many chicken bones have been shaken over them as well.
Watch a live interview with Kris K and his wife. He barely speaks, doesn't seem to have a great grasp of what is going on and wife does all the talking. She goes on and on about his cure. I will give the benefit of the doubt and say she wants to believe he is better, but I would have to say it is more likely that 80 years of hard living has caught up to him. It is a shame, he was a bright, gifted (and gorgeous) man. I hope they both find some peace and get away from the LL vampires.
I'd bet on Alzheimer's. About 70% of all dementia is Alzheimer's. As I recall, about half of all people over 85 have Alzheimer's, so at 80 he's high risk for AD. You couldn't really rule it out while he's alive, except by PET imaging with something like Florbetapir, which can only be done at a very few research centers. (It requires a cyclotron to make the radioactive fluorine and a synthetic chem lab to convert that into the tracer before the fluorine decays. It has a half-life of two hours, so you really have to move.) Of course, it could still be one of the less common forms of dementia, but Alzheimer's is by far the most common and is strongly age-related, so the betting would certainly be on AD.
AD is a regressing/remitting disease, so there will be periods of apparent improvement. Combine that with cognitive bias from wishing to see a quack treatment work, and you have a recipe for self-delusion.
I was surprised too by the statement that Alzheimer's had been "ruled out". Unless there was an autopsy, I highly doubt it.
I should add that the second most common form of dementia is vascular dementia. As I recall, that's about 15% of all dementia. And, it's controversial whether or not it is separate from Alzheimer's. The symptoms are pretty much identical and the diagnosis criteria are suspect -- if you've ever had a stroke, your dementia will be classified as vascular dementia no matter how strongly it resembles AD. Also, there are characteristic vascular pathologies that occur with AD, so these diagnoses could just be different places on the same spectrum of one disease.
This whole story has echoes of many ‘success’ stories of cancer being treated with alt.med
And like the cancer cures, crowd-sourcing has become an important part of the Chronic Lymes scammers' business model -- the amount of money they can extract is no longer limited to the savings of individual clients, but extends to the generosity of strangers.
So an expansion of Mexicon Lymes clinics and the accompanying GoFundMe pages.
Anyway, the 1980s came, and [...] Kristofferson continued to work and appear in movies,
Let me take this opportunity to recommend his role in Millennium, which became my new favourite bad movie after watching it last year. Also I have been announcing "Timequake: force INFINITY" at random intervals.
"Millennium" has the production standards of a Blake's 7 episode and the performance conventions that you see in early Cronenberg films, and take to be an expression of his Ballardian themes of dehumanisation and the deaths of affect and personal connection, until they show up in every other movie from that milieu. It has sexual politics from the 1970s, with characters all querulous about Women's Lib, and special effects from the 1960s. Mixed in with 1980s New Romantics hair styles, which evidently will be born again in the distant dying future, along with grimy black-leather uniforms made all the more dystopian and cyberpunk by gluing on ICs.
It is as if the script fell through a time-slip.
I don't have the software to listen to this thing. Perhaps someone who does can tell me a little about what it says.
That show should be on YouTube. I listened to the first 12 minutes or so and it seems a good response to the Lyme advocates and Lyme doctors.
He describes diagnosis of true Lyme disease.
The lab tests that these specialty labs are doing aren't clinically validated, they just have to be certified as "accurate" by the lab itself.
The FDA is trying to require clinical validation.
Patients who have been suffering symptoms for months or years aren't happy or satisfied being told they have a syndrome with no solid cause or effective treatment. So when a doctor tells them they have chronic Lyme disease, they think they have found the answer.
He has had patients that he treated who then went to one of these doctors and were treated for months or a year and didn't get any better and came back to him wondering why the treatment didn't work. He had to explain that it wasn't a correct diagnosis and the treatment wasn't effective for whatever they had.
Thanks. That's about what I figured it would be, but I wanted to be prepared to comment in the event of a dingbat eruption.
a dingbat eruption
YOU ARE ATTACKING ME PERSONALLY BY DISAGREEING WITH MY GIBBERISH
"This whole story has echoes of many ‘success’ stories of cancer being treated with alt.med. conveniently forgetting to acknowledge the role of conventional treatment, often surgery for cancer..."
Idiot. There is no treatment for AD and it ends in death so what you claim is impossible. So if KK is better, then his idiot doctors misdiagnosed him, then malpracticed on him, and he got far worse. Then he saw a LLMD and is now doing better. Seems Orac is quick to disparage people who actually helped KK, and is silent on the MDs that were slowly killing him. What a surprise! The headline should have been "Lazy Doctors Misdiagnose and Malpractice on Late Stage Lyme Patient Kris Kristofferson Before he Gets Proper Treatment for What Really Ailed Him".
The link @53 was an OK takedown of 'chronic Lyme', but the world needs more Mark Crislip.
For general background on 'chronic Lyme' and it's 'treatment' -
And for details on the testing for Lyme -
I suspect that Kristofferson's doctors were right ("you don't have Alzheimer's, stop taking those medications") for the wrong reason. Someone else might have said "it's not Alzheimer's, it's a vitamin B-12 deficiency, stop taking those pills" or "it's not Alzheimer's, you need more red meat, stop taking those pills." All three of those would have had the same effect of getting him off the unneeded and possibly harmful medications.
Also, there are treatments for Alzheimer's, though none are very good yet, and you're correct that there is no known cure. (Would you say that there is no treatment for such things as diabetes, hypertension, multiple sclerosis, AIDS, and arthritis?)
Hey there "Orac." Why don't you show your face and sound off publicly with Dr. Phillips. It would be enjoyable to watch him take you down, you low-life IDSA scum-bucker.
Orac is well known. But I cannot imagine that he would stoop to face off with a jabbering quack. Why would he? Those spectacles are appeals to emotion, not to reason. How about Phillips presents his best arguments in these pages and Orac his? A logical and rational evaluation of claims versus realities. Readers can judge for themselves.
"you low-life IDSA scum-bucker."
Keeping it upscale hmm, you suppurating genital lesion?
What's wrong with the Industrial Designers Society of America?
Institute for Defence Studies and Analyses?
Industrial Services of America, Inc. (NASDAQ: IDSA)?
International Dance Sport Association?
Indian Direct Selling Association?
Illinois Directors of Student Activities?
Well, at least "Feder's Nephew" has outed Orac as actually being Mark Crislip. Or the other way around, whatever.
#26 "Good irony, like a good martini, must be served very dry."
BS The best Martini is Tanqueray with Noilly Pratt, which is not an extra dry vermouth.
Name a better Vermouth and I will give you and handjob.
@Narad: What, and here I thought "Orac" was really Dr. Harriet Hall!
I'm Orac and so's my wife
I have to disagree with the Alzheimer's/Lyme connexion. If you look at the Epidemiological map for Lyme, and then the one for Alzheimer's, then you would conclude that Borrelia actually inhibits Alzheimer's Disease!
I am serious. This is a contradiction.
Can we have the real cause for Alzheimer's please? Is this psycho-social, chemical, or bacterial?
sound off publicly with Dr. Phillips
If Dr Phillips wants a public debate with Orac, or for that matter with Mark Crislip, it's up to him to issue the challenge, not some skeezy little coward.
OK, I can't help it:
"♫ Good enough for me and Lisa Burgdorr...fee
" La da da
" La da da da...."
^ Rats, I dropped a consonant. Good night, Mrs. Calabash, wherever you are.
Travis @68: I can't give you the cause for Alzheimer’s, but I will say 1) people are working on it. Working really, really hard on it.
2) If I had to guess I would say it's going to be genetic and physiological, with the possibility of prion involvement.
But! I don't study AD or the brain at all.
What do you say to Dr. Phillips shredding Paul Meade with science? How embarrassing for the liars at the CDC and IDSA! Beautiful to watch. They have been challenged to debate this on TV. Let's see if the CDC would agree to the public humiliation. Many of us sure hope so: http://bit.ly/29tTvhY
If you look at the Epidemiological map for Lyme, and then the one for Alzheimer’s, then you would conclude that Borrelia actually inhibits Alzheimer’s Disease!
Some of us look at those maps, and see that AD is equally prevalent in countries where LD does not exist, and conclude that the Lymes spirochete cannot be a significant cause of Alzheimers.
Other people look at the maps and conclude that if Alzheimers is so widely distributed, then LD must be as well, it's just that some countries aren't testing for it properly.
I think Travis may have been referring to these maps, which I linked to in the outbreaknewstoday thread.
This map shows the geographic distribution of reported Lyme Disease cases in the U.S. in 2014.
A notable feature is how densely concentrated it is in New England, with moderate concentration in Wisconsin and Minnesota. Almost none in the Deep South, West, Alaska, and Hawaii.
Now compare that with this map of the prevalence of dementia. About 70% of dementia is AD, so this is basically a map of AD.
If Lyme caused AD, these two maps should be almost the same. They're nothing alike. The highest prevalence of AD is in the Deep South (except Florida). Minnesota has among the lowest prevalence of AD, despite being one of the states with a high level of Lyme Disease.
I was thinking what's different in the Deep South that makes them more likely to have AD? Aha!
It's not a perfect fit, but it's not bad. There is a very significant correlation between type 2 diabetes and AD, so obesity is a plausible risk factor for AD.
With depression, one's mileage does vary. Mine caused major memory problems (I admit that substantial amount of stress might have added some) and when I got a treatment that worked - apparently, depression develops resistance, too - things got better. Yes, I know the feeling of, say, going shopping, thinking What the hell I'm doing here, going home and finding nothing to eat.
so obesity is a plausible risk factor for AD.
By way of inflammation?
I am disappointed by the absence of Dr Sin Hang Lee in this thread, with his astroturfed lobby groups (set up by his hired lobbyist,/A>) campaigning for more money to be spent on Lyme Disease testing, preferably the tests proprietary to Sin Hang Lee.
Type 2 diabetes and AD are statistically correlated. Whether one causes the other or a third event causes both is speculation. I suspect it is endothelial dysfunction which causes both. It's strongly implicated in T2DM, and a growing body of evidence suggests it also causes AD.
Mark @79: Isn't type II diabetes also associated with increasing age? I would think that age would be a huge confounding variable with AD.
Yes, but why is it associated with age? Endothelial dysfunction is associated with age due to the age-related decline in tetrahydrobiopterin (BH4). BH4 is a necessary cofactor for several enzymes, including the nitric oxide synthases (NOS). The endothelial NOS (eNOS) is critical to endothelial function because it synthesizes nitric oxide, which is the signal which causes smooth muscle cells around the blood vessels to relax (vasodilation). Endothelial function is measured as the vasodilation which occurs in response to various stimuli which can trigger it.
This may explain why high-sugar diets are a risk factor for type 2 diabetes. BH4 is a powerful antioxidant, much more powerful than vitamin C. Elevated blood sugar causes oxidative stress in the endothelium, which depletes BH4, so this could be how a high-sugar diet could trigger type 2 diabetes -- for example, in teens and young adults that consume greatly excessive amounts of sugary sodas.
Isn't B reserved for Boron?
I thought BH4 was tetrahydroborate.
Let us not forget about the role of Dietary Fat in Insulin Resitance!
Organikers have their own conventions. BH4 is widely used for tetrahydrobiopterin, more often with the 4 subscripted.
While Orac and the rest of you "skeptics" continue to dismiss the concept of chronic Lyme disease, here's the story of a brave M.D. at Harvard Medical School (Dr. Nevena Zubcevic, an instructor in Physical/Rehab Medicine) who's out in the real world educating physicians about the perils of Lyme ignored by the medical community.
“Graduating medical students and doctors really aren’t educated about the gravity of this epidemic,” she said. “There’s a gap there that needs to be filled. We’re all responsible to educate our young doctors about what this entails.”
"Dr. Zubcevic said the recent revelation that actor, singer, and songwriter Kris Kristofferson was cured of dementia once he was properly diagnosed with Lyme disease should be a lesson for medical professionals on how pervasive the disease is, and how often it is overlooked."
A friend who is unfortunately woo-prone posted this link on her Facebook page, to which I responded with a link to Orac's article. I am now sensing a block in the Facebook Force. :(
Not that it much matters but Zubcevik is a DO, not an MD. Still, you ought to try to keep to facts. Also, a quick check of the Harvard faculty and staff roster does not disclose a Nevena Zubcevic.
Zubcevic has six indeed publications. None of them regards Lyme disease, chronic or acute. While she may be brave, her purported quotes on chronic Lyme suggest she was either misquoted, doesn't know what she's talking about, or is a nut.
Why is it that kooks at the fringes are always described as 'brave?'
"Not that it much matters but Zubcevik is a DO, not an MD. Still, you ought to try to keep to facts. Also, a quick check of the Harvard faculty and staff roster does not disclose a Nevena Zubcevic."
Too quick a check.
"Dr. Zubcevik is an Instructor in the Department of Physical Medicine and Rehabilitation (PM&R) at the Harvard Medical School"
You are correct in that 1) Zubcevik is a D.O. and not an M.D., and 2) it doesn't much matter, as D.O.s and M.D.s have much the same training and similar adherence to evidence-based medicine).
"Why is it that kooks at the fringes are always described as ‘brave?’"
I again lament my lost potential as a highly successful con man, as well as some posters' deficient irony detection skills. :( *
*try reading the last paragraph of my previous post.
Bizarre. There are 6 indexed publications for a Zubcevic. She does in fact appear as faculty as Zubcevik. There are two indexed publications for Zubcevik - neither worth a damn.
Missed the irony. I hate when that happens.
Just so I have this straight. Doctors diagnosed KK with Alzheimer's due to memory problems, yet this author claims the memory problems were on account of the Alzheimer's drugs? Alzheimer's drugs cause memory loss now? Lol...perhaps they shouldn't be given to people suffering memory loss then, or anyone for that matter.
So KK gets tested for Lyme disease and treated and suddenly starts to recover. But rather than blame the idiots who initially misdiagnosed him, and put him on all kinds of medicines that were harmful, the author wants to blame the doctors that diagnosed and treated him correctly, which resulted in a recovery? Sorry, perhaps you should stick to cancer surgery, as you don't know anything about Lyme disease, antigenic variation, persister cells (actually provoked by the standard CDC Lyme treatment). The poor logic in this post likely killed some of my brain cells, and the horribly outdated information about Lyme disease is a disgrace in a so-called medical blog.
[ORAC NOTE: 'nym changed to match previous comments. If he tries sockpuppeting again, he'll be banned.]
" The poor logic in this post likely killed some of my brain cells, and the horribly outdated information about Lyme disease is a disgrace in a so-called medical blog."
I'm thinking that whatever functioning brain cells you once had got killed off long ago. If you have a few functional neurons left, read this. It is current, clearly differentiates untreated Lyme from chronic Lyme and chronic fatigue from so-called 'chronic Lyme.'
So it would seem that it is you who know nothing about Lyme disease. Or about logic, current status of Lyme research, or how to sneak sock-puppetry by the watchful eye of Orac.
Maybe you should stick with commentary on sites more appropriate to your strengths. Anime, maybe.
"I’m thinking that whatever functioning brain cells you once had got killed off long ago. If you have a few functional neurons left, read this."
JJ Halperin? You have to be joking. That lamebrain hasn't done anything of any consequence in the field of Lyme disease except espouse the same old tired junk that's long been disproven (ironically, sometimes by his own earlier work where he talks about chronic Lyme disease, even using that term). I guess you think Dr Neil Spector is a quack too, who made up his disease, was really just suffering from the "aches and pains of daily living", and got a heart transplant he didn't need? How many times was he given the CDC treatment, yet still required a heart transplant? And to retort you post an opinion piece by Halperin? I think at this point the only thing I can really say is QED.
Halperin has publish 91 indexed, peer review studies. How many have you published? Spewing a stream of ad hominems does nothing to challenge his work. It does suggest that you are a douche nozzle.
No idea who Neil Spector is. Phil's brother? If he argues for chronic Lyme disease, yes he is a quack.
@Coquette ...hasn’t done anything of any consequence in the field of Lyme disease except...
Shows how much he knows of Lyme Disease. He probably thinks that it comes from....not having any limes during long trips at sea.
That is scurvy buddy!
I'm getting an awfully TheBleepingTruth-esque vibe from Coquette...
...but regardless, nice pearls you're clutching there, Coquette
- when someone replies to your* opinionated rant blog comment without links or references with a link explaining why they think it is relevant.
* If you're not TheBleepingTruth, my most sincere apologies for insulting you like that.
And to TheBleepingTruth for insulting you in such a way. My deepest regrets...
An opinion piece with 72 references to other "opinion pieces", and reviewed by 4 others scientists with some expertise in the field.
I'm impressed by the number of metrics this Dovepress journal is providing for its articles.
"Spector took powerful antibiotics through an intravenous line every day for three months to rid his body of the Lyme disease bacteria. “I used to sit next to my patients while I was getting my antibiotics, and they got their chemotherapy,” he recalled."
Spector was somehow able to get IV antibiotics every day for 3 months and yet still his heart was beyond repair and required replacement. No ID doctor would ever treat that long with IV. IDSA says 14 days of doxy and you're cured. Hard to catch, easy to treat apparently. I guess the spirochetes infecting Spector's heart didn't read the IDSA guidelines.
I wonder what the cost differential was between that treatment and 2 weeks of oral antibiotics taken when it would have done some good. I'm guessing that would have cost about $20, as opposed to what he ended up needing which was likely > $50k in IV antibiotics and $500,000 for the heart transplant. So that's a cost ratio of 1:27500. And people claim that medicine has nothing to gain by ignoring Lyme disease....lol.
Had Spector had Halperin for a doctor, he'd be dead, and all those breast cancer patients who were helped by Spector's cancer therapy would have never had that opportunity to get better either. Too bad this blogger decided it was better to spend his time mocking and ridiculing Lyme patients than do what Spector did, and actually contribute to help breast cancer patients, even when doctors weren't bright enough to assist him with his health problem until it required a heart transplant. But I guess that's modern medicine. Why prevent illness when its so much more profitable to treat it?
" I guess the spirochetes infecting Spector’s heart didn’t read the IDSA guidelines."
Post a link to the pathologist's report on Spector's heart and maybe we'll have something to talk about. At the moment it would appear that whatever the cause of Spector's heart problems, IT WASN'T LYME DISEASE.
My understanding was that his heart was damaged before starting those antibiotics, not because of them.
So I've read the Duke link. Do you understand the difference between undiagnosed Lyme and chronic Lyme? Do you understand that he went undiagnosed and untreated for apparently years? If he'd had Halperin for a doctor, perhaps he would have been diagnosed more quickly and avoided the heart problems entirely. So my comment above is wrong. It should have read, "it wasn't CHRONIC Lyme."
"Do you understand that he went undiagnosed and untreated for apparently years?"
Gee, I wonder why that would happen to a doctor of all people?
"It should have read, “it wasn’t CHRONIC Lyme.”"
So he had it for many years, long enough to destroy his heart, but it wasn't chronic? Lol...
And so now, with all your illogic exposed, you are now claiming that his heart wasn't actually infected? Wow, that's some big conspiracy you are dreaming up. It appears at this blog, that loyalty takes precedence to facts. So be it. Can I be banned now please from ever reading more of this drivel?
Ough em gee! He was insidiously attacked by co-conspirators!!!!!eleven!!!
Or was this not what you meant with " But I guess that’s modern medicine. Why prevent illness when its so much more profitable to treat it?"
"you are now claiming that his heart wasn’t actually infected?"
Nope. His heart was infected. Maybe destroyed by that infection.
"Gee, I wonder why that would happen to a doctor of all people?"
Because he was treated by a human being and that human missed the diagnosis.
"So he had it for many years, long enough to destroy his heart, but it wasn’t chronic?"
It wasn't the disease that is claimed to be 'chronic Lyme." Chronic Lyme among the so-called Lyme literate is Lyme that has been treated yet is believed without any evidence to still exist.
"Can I be banned now please from ever reading more of this drivel?"
Sure. You don't have to be banned. Ban yourself. Go away.
But that way Coquette couldn't claim we Couldn't Handle The Truth™.
Which, as usual, seems to be wild claims laced with insults without source attribution or links to underlying research.
"But I guess that’s modern medicine. Why prevent illness when its so much more profitable to treat it?"
Exactly! All those practices that offer colonoscopies and mammograms - they don't, really. They tell you to come back when you have advanced cancer, because they make so much more money treating it then.
And all that preventative stuff is aimed at finding little things that don't need to be treated and making money off of that.
You may think those statements contradict each other, but you're just a bunch of pharma shills.
*"Irony detectors at full power, Mr. Sulu!"
and all those breast cancer patients who were helped by Spector’s cancer therapy would have never had that opportunity to get better either. Too bad this blogger decided it was better to spend his time mocking and ridiculing Lyme patients than do what Spector did, and actually contribute to help breast cancer patients
Oncologists like Spector help patients. Yay modern medicine!
But I guess that’s modern medicine. Why prevent illness when its so much more profitable to treat it?
Modern medicine treats patients. Boo hiss modern medicine!
this blogger decided it was better to spend his time mocking and ridiculing Lyme patients
This use of patients as human shields -- "When you criticise the alt-med scammer, you are really mocking and ridiculing the patients!!!" -- does it turn up in mainstream medical debates?
This just needs to be said to break up whatever twisted reality you are living in: You are an f-ing idiot. It doesn't matter what you call the illness, the fact of the matter is that it exists. The whole premise of your argument is based on the prolonged use of antibiotics for 'chronic lyme' which is a private insurance agenda. There are bigger picture things that influence healthcare and medicine than just the science you act like you know, but you're ill-informed on that front as well. Your contrived depiction and smug attitude make you sound like an idiot. Get in touch with me if you ever want to discuss the issues around Lyme further. I'll run circles around you with this shit. Eh, nevermind keep doing the awesome service you're doing for the world, BUD.
No idea of whom or what your rant is apropos but it comes off as pretty much unhinged.
"It doesn’t matter what you call the illness, the fact of the matter is that it exists. "
Well it actually does matter what a disease is called. Labels are how we communicate, how we share common understandings, how we direct our attention to common objects.
One presumes that chronic Lyme is the disease you insist exists, an assertion not supported by much in the way of evidence. If indeed the disease is a refractory Borrelia infection, we should be able to find traces of the bacteria. If the putative disease is not caused by Borrelia then it isn't Lyme, chronic, acute, or any other flavor. See, that labels thing again.
"The whole premise of your argument is based on the prolonged use of antibiotics for ‘chronic lyme’ which is a private insurance agenda."
No, Lyme is a bacterial infection easily treated with appropriate antibiotics. Bacteriology. Immunology. Paying for it may be an insurance issue. I'm not sure how the word 'agenda' applies.
"Your contrived depiction and smug attitude make you sound like an idiot."
I was just thinking this about you. Great minds think alike, huh?
" I’ll run circles around you with this shit.,"
Yeah, but running around in circles is a waste of time, it never gets you anywhere. But keep running. It's good for your cardiovascular health.
@#109...are an f-ing idiot...
Who is an f-ing idiot??
"Who is an f-ing idiot??"
I don't know either. We could start a pool where everyone puts up $2 and their guess. I'm in for $2 that the f-ing idiot is 'An Informed Consumer.'
Get in touch with me if you ever want to discuss the issues around Lyme further. I’ll run circles around you with this shit
Now who is being smug? If you have info, then spill it.
Sorry if I offended anyone other than the person who wrote this article. Solely directed at his misconceptions, which puts it nicely. So I stumbled back around with this tab still open on my computer and couldn't help but reread this garbage. Where are you getting your science from? All you have actually done is identify some diagnostic terms/types of treatment and taken a position while belittling another that you obviously know nothing about.
Borellia and other coinfections are fat soluble and infiltrate the gut and reside in the biofilms of the body long enough to then infect the tissues and organs which is when Lyme can be acute and potentially fatal because of everything that comes with it - suppressing the immune system, for instance. You might hear the term 'bacterial persisters' which describe these types of bacteria that either do not respond to antibiotics or that have remained in the body too long due to improper diagnostic measures, protocols, primary forms of treatment, and disarray in the medical community (thanks for noticing my reference to a bigger agenda at play with all of this).
What are your credentials? I don't say that sarcastically, I am actually curious. Because you seem to be blindly siding with a mentality that is influenced by a lot of bullshit bureaucracy at a policy level. Learn the history of the actual disease before you speak about it like its a Hollywood trend that should be frowned upon. There are people that are really suffering badly because of this very complex illness. There are intense phases of remission and relapse because whatever infectious persisters become the problem can lay dormant or wreak havoc based on a lot of environmental factors. Is ongoing antibiotic therapy the answer? Absolutely not, its prevalence is dangerous as well and could have much graver implications when it comes to the resistance of common bacterias. The point is that the science needs to grow to combat this illness. And whether you want to call it Chronic Lyme or Post-Lyme syndrome or spend time arguing about Borellia being able to sustain the wrath of the almighty antibiotic, the fact of the matter is that the parasitic infection is real to whatever degree allows it to cause systemic and chronic issues to the body and mind (for a whole lot of people at this point). And unfortunately our broken, corrupt U.S. healthcare system cannot accommodate the prevalence of this inconvenient and costly man-made illness.
You just seem like a loser that doesn't deserve a forum to preach like this. Figured I would share my two cents. I've already spent more time on this than I wanted to, but if this helps one person see a different vantage point, then I have already accomplished more than your entitled, uniformed and downright hurtful rant has attempted to.
"Sorry if I offended anyone other than the person who wrote this article. "
I suspect you've failed. Orac may be amused but I doubt he's offended.
"What are your credentials?"
Orac is an MD, PhD, an active researcher, academic, and practicing physician.
So as long as we're playing 'who has the bigger penis,' what are your qualifications. Because while Orac always provides citations where appropriate, all I see in your comments is a lot of jabber without one single frigging citation to back up your assertions. Put up or shut up.
You allege a syndrome which you suspect is secondary to acute Borrelia infection. You apparently cannot identify the causal agent but a bunch of people - some of whom live in areas where Borrelia is alien - who claim this syndrome secondary to acute Lyme. This is correlation not causation. The symptoms of this syndrome seem varied and non-specific enough that they may point to other differential diagnoses or maybe to a psychosomatic condition. You don't seem to have any meaningful epidemiological evidence that even supports grouping these people together under a common diagnosis.
Your febrile rants and political theories do not define a medical condition (aaaaahhhh, it occurs to me that psychiatrists may disagree). In fact you seem to have only the most cursory understanding of infectious disease, bacteriology, or epidemiology. Yet you come to this forum, run by a scientist with serious cred with commenters many of whom have significant depth of knowledge on the very subjects that matter here, and you prattle on with nary a citation as if anyone should value your pronouncements more than they would a desiccated dog turd. It is absolutely absurd.
If you actually have some information that would pass muster in a setting beyond a ninth grade biology class, bring it. You will get an honest hearing here. Good science talks. Bullsh!t walks. I smell bullsh!t when you claim greater expertise than an MD, PhD and yet write:
"Borellia and other coinfections are fat soluble ..."
First off an expert would know how to spell Borrelia and second, I'd love to read your explanation of lipid soluble bacteria. Really. I could use a good laugh.
Informed Consumer: did you know that the West Coast of the US is protected from Lyme Disease by lizards? It's true! The ticks that would carry Lyme feed on fence lizards (you might know them as blue bellies) and the components of the lizards' blood kill the Lyme bacteria in the tick's gut so they are much less effective vectors.
And that is why there is no Lyme disease in the west.
Most people here have a simple conception of the term "Chronic Lyme", and equate it to an imaginary woo disease.
In your opinion, is chronic lyme:
•Persistent Immune Reaction?
•Imaginary Woo Diseae?
How fascinating and coming from a person complaining about the author's credentials. Mine are directly relevant by the way and you have a pathetic grasp of any pertinent scientific discipline.
Borellia and other coinfections are fat soluble
I'm just going to stare at this statement for a while until it realises what it's done wrong.
Spirochetes are too large to be soluble in anything.
The concept of solubility does not apply to spirochetes.
If you're asking about our host, I'm afraid that's an intelegence test. If you can't figure that out, please turn off you computer.
Nobody denies the suffering that some people are ... suffering. What all the evidence denies is that the cause of the suffering is chronic Lyme disease. If it was Lyme disease, Borrelia burgdorferi would be found in those patients by someone other than "Lyme literate" doctors, who use tests that are always positive.
The suffering is real. Chronic Lyme disease isn't.
Best anagram for Informed Consumer:
Rescind fume, moron!
Man, AoA seems to be short on fresh content.
AoA is short on a lot of other things as well.
Nimrod News also is recycling content, in the form of a more than year-old story about the death of a 14-month old three days after receiving 8 VACCINES! (actually four, but who's counting). The nasty medical examiner said it was asphyxiation, or SIDS (or something), but THREE INDEPENDENT PATHOLOGISTS have declared the death was due to "vaccine-induced hypercytokinemia", an entity my med school and residency training sadly failed to teach me about.
It might be mildly interesting to know who the THREE INDEPENDENT PATHOLOGISTS are and if any of them is prone to exclaiming "Oh, wiseguy" or "wub-wub-wub-wub-wub" when inspired to make a diagnosis.
As Orac noted last year, other people also inquired about the THREE INDEPENDENT PATHOLOGISTS, to no avail.
If they were willing to base a diagnosis on cremation ashes and a seven-year-old blood sample, I suspect that they were too independent to belong to a standard credentialing body, and may well be independent of conventional medical knowledge.
Orac was covering the VacTruth version of the story, the source for the human centipedes at NN. VacTruth took down their version within two months of publication, but hey, Wayback Machine.
Best anagram for PoliticalGuineaPig = I Copulate Ailing Pig
Stay classy Annabel.... lol
Oh so the author has a bunch of minions, good to know. Not really concerned with the approval of a bunch of high-and-mighty blogging 'intellects' who are choosing to ridicule a vulnerable population that is in the depths of darkness and looking for answers. Seriously? GO FUCK YOURSELVES. You all take digs at my claiming that Borellia. Sorry let me clarify, 'Regarding borreliosis, the molecular component of the pathogen that appears initiate the pathogensis are the bacterial lipoproteins (BLPs) which are found within the outer surface proteins of the borrelia cell membrane' (http://www.ppt-health.com/lyme-disease-basics/three-doctors-speak-up-on…). Go ahead and keep flashing credentials, I'll keep cross-referencing the real information out there from the real experts while you all continue to look like fools. And at the end of the day, the specifics of that point don't even matter, because you are missing my point altogether. I was simply getting at the fact that the bacteria hides in the biofilms and in other tissues/ organs in the body - not only the blood which is the medium we test for it. How else might you all explain someone having heart carditis or brain encephalitis as the result of Lyme Disease? So for you all to act like the current diagnostics for Lyme are sufficient is just ludicrous. 300,000 new cases of Lyme a year (not including those that go undiagnosed) and 1/4 cases persists to turn into Chronic Lyme - or whatever the hell you all want to call it to save the all-knowing image of conventional medicine. NEWS FLASH: conventional medicine has failed the Lyme population. We need new answers, and we need broader thinkers than people like you. Wake up, open your eyes, and have some compassion for the people that are suffering from this gut-wrenching illness. And if you all want to open up the subject matter to healthcare legislation or access to care for Lyme, I would be happy to hear your expert opinions on how we've got all of that figured out too. And no I won't belittle you when you don't know shit about the origin of the disease which is ultimately why it doesn't get covered by any health insurance policies, a downright criminal oversight. Keep it up gang, you all are doing great work to help make strides.
And thank you, JustaTech, for actually trying to offer solutions. I have read mixed reviews on the effectiveness of the lizard. They apparently have a protein that kills borrelia, but the tick population is also equalized when there are no lizards to serve as hosts. But that is a great example of the the kind of preventative measures we need to enact.
Truly, Informed Consumer
Informed Consumer, while you like to think yourself informed, you entirely discard the entirety of medical school, residency and experience in every evidence based physician on the planet, while seeking to claim that something like carditis isn't blood related.
Small hint, the heart pumps what again? Oh wait, blood!
You nearly got somewhere with encephalitis, save that blood is all over that brain thingie as well. Don't believe that, try a tourniquet around your neck, see how quickly you'll do that dead thing, although, I don't recommend it.
Hell, you nearly got somewhere when you claimed bacterial proteins are present, but you failed to provide some way in which dead bacteria could cause a problem.
News flash: Modern medicine is evidence based, without evidence, treatments aren't provided, as that'd be non-evidence based, akin to bleeding patients, leeches and sheltering someone from bad odors, thinking that stink causes disease.
So, do fuck your own self, in whatever way you find the most comfortable. We'll stick with evidence based medicine and treatments, rather than bullshit based medicine. Once a bacteria is dead, it can't infect you, as if it did, it'd be zombie bacteria or something. As zombies don't exist in the real world, the point, whateverinhell you were attempting to make when instructing people to fuck themselves is nonexistent.
Oh, for the record, a niggle, encephalitis is by nature in the brain, so "brain encephalitis" is just encephalitis. I can't get encephalitis of my balls, as those are testicles, not a brain, select another organ for convenience, it remains the same.
That said, rail as you want against insurance companies, every physician that I know does, as does myself and my wife.
Where, my wife is now going on her second week of no insulin, as the single approved glucometer test strips are still out of stock at Walgreens. One doesn't inject insulin blindly and all. She's also eagerly awaiting permission from the insurance company to receive injections to treat severe osteoporosis, so that she can have other major skeletal issues addressed.
"a vulnerable population that is in the depths of darkness and looking for answers."
Looking for answers or looking for enablers of confirmation bias?
You may not like what science has to say about so-called chronic Lyme. That does not make science wrong. No one wants to be dismissive of the symptoms or the needs of this population. But you have to look for answers in the right places. You aren't going to find hairspray in the freezer and you aren't going to find your answers in the "Lyme literate" community.
Doesn't it disturb you that these symptoms appear in geographies with no endemic Lyme disease? Doesn't it trouble you that even using state of the art PCR techniques, no hint of Borellia can be found?
Take your whine and your rant somewhere else. Speaking for myself, I'll save my compassion for someone who doesn't have his head up his butt.
You know, all of this talk about Lyme has reminded me, hopefully, I'll remember at my next doctor's appointment.
I really should get a Lyme titer done, just to see if I was infected on the few times a deer tick embedded on me when I was out doing military things.
Better safe and tested than sorry if I am infected and it doesn't get detected until damage has been done.
I do wonder if a small subset of those who carry on about "chronic Lyme" may well have some autoimmune issues that are secondary to disseminated infection stages of the disease.
"who are choosing to ridicule a vulnerable population
We are blatantly not! We are ridiculing you, because of your insults and the whole soluble in fat thing. Be fair now that was a clanger.
I'm beginning to suspect that you feel you have "Chronic Lyme", am I right?
Yon link, references Dietrich Klinghardt, MD, Ph.D. and Dr. Mercola. Our host is not ignorant of them, brace yourself:
Now it's no crime to be taken in by these people, but please for your own sake, back away from them slowly.
Never mind it was you who specifically requested their credentials (I suppose if they hadn't answered, you'd be calling them out on that instead -- so, win-win in your mind?). And never mind that while you claim to be "cross-referencing the real information", you yourself have provided exactly one link, which didn't actually support your claim that Borrellia is fat-soluble. (Hint: a surface protein is not the same as an entire organism. Which is a good thing, or eating french fries would be a horrific experience for humans.)
Informed Consumer: "have some compassion for the people that are suffering from this gut-wrenching illness."
I do have compassion for people suffering deleterious symptoms, whether from "chronic Lyme", "Morgellons disease" or other disorders attributable to post-infectious syndromes or mental illness . I have no doubt the symptoms and distress are real. I have zero compassion for those who take advantage of such patients by giving them ineffective and dangerous drugs.
"And if you all want to open up the subject matter to healthcare legislation or access to care for Lyme, I would be happy to hear your expert opinions on how we’ve got all of that figured out too."
I'm open to improving access to psychiatric care - but not to politicians using their positions to legislate useless treatment for non-diseases or threaten caregivers who don't fall in line for fantasy diseases - like the Connecticut attorney general who abused his post to harass the Infectious Diseases Society of America.
The article/blog/BS written by Orac regarding Lyme Disease was outrageous and I wish the disclaimer regarding his posts was planted front and center before reading the incorrect information he posted, as if it were fact. Here's a fact: there is no test that is 100% effective in screening Lyme. Also, we know this organism behaves similarly to syphilis and certainly can go dormant, remain alive after treatment and resurface if one has been infected long enough. Please, any reading his crap science, don't listen to him. Trusting his explanation could kill someone and I found his post to be dangerous. Lyme literate doctors are not phonies. They've helped thousands of people suffering from a real disease caused by microorganisms we don't know much about. When I say "we". I am referring to the field of medical/science. What "Orac the all knowing" says can't be true certainly can be and what he states as fact may not be so. Science is evolving, as is medicine and microbes for that matter. Orac you are dangerous and totally off base when it comes to Lyme disease. You owe the community of medicine and science an apology for pretending to be so smart. You owe readers, especially those suffering from Lyme an apology for printing incorrect information as if you were an expert. I rarely use the word shame, biut it serves well here - Shame on you, Orac! I hope you never suffer from Lyme disease even if it would teach you a lesson!
"Also, we know this organism behaves similarly to syphilis and certainly can go dormant..."
Why, they're both spirochete bacteria as well, just as H. Pylori is.
All of which we've got a pretty good understanding of the biology of. You know, culturing the bacteria in the lab, testing treatments and infection modalities, etc.
Dormant bacteria are still detectable, as their proteins don't become dormant, they're part of the bacteria and the immune system continues making antibodies against the bacteria.*
"Lyme literate doctors", not a one of which follows the established research, but instead provides the patient with rectally acquired facts.
The rest of us call that crap and when using crap to treat a non-malady, it's called quackery.
Dangerous is following quackery as factual science, as it's not evidence based at all.
*Heavily Goobered down, as it's rare for any pathogen to enter a cystic stage in the body, leaving bacteria at a low energy consumption level, not largely inert as a spore/cyst.
What an arrogant attitude. Maybe if doctors did anything other than give pills that mask problems, people wouldn't have continual chronic problems. Maybe they wouldn't have to turn to alternative doctors for some relief. Call it what you will but if people see results so be it. The doctors obviously failed Kristofferson. I believe in science and testing but if the scientifically tested mantra allows FDA approved medicines to killl someone in America every 19 minutes, you may want to question what medical science is today. You guys are now one of the top causes of death in America.
Exactly! I should've went to a chiropractor to treat my 200/100 blood pressure, maybe got some acupuncture as well!
My aorta would've blown out and alt-med could then claim yet another victim to not be tracked or noticed.
Oh wait, I went to that arrogant doctor (odd, she wasn't arrogant at all) got my methimazole and the dosage has since been adjusted downward twice, as the hyperthyroidism that caused my hypertension came under control.
Of course, my blood pressure wasn't controlled with reiki, but with something that works, metoprolol.
But, it's interesting, that invented number that you trot out, provided out of the rectum of your betters. When one plots it out for a year, it'd be around 10% of new births per year.
Oddly, no statistic on deaths shows any similar number.
But then, that's the problem with rectally sourced facts. They never, ever quite meet the reality test.
Wow. Such animosity. Facts seem to have passed right by some of you. Windriven, after all the research we've done, cardiac disease is STILL the number one killer in America. I'm not saying don't take the blood pressure pills, but my point is science has done nothing to get to the bottom of our diseases; just masking them. Wrizd1, your facts on prescriptions are erroneous. It isn't just allergies, or sensitivities that cause the problems with many prescriptions We are learning about Statins now and PPI's that people blindly take with no idea of the long term side effects. Usually changing the diet fixes GERD but a pill is quicker, regardless. I'm not anti doctor or anti medicine. But nor do I dismiss alternatives that have worked for many people. It's our culture that doesn't want to accept any changes. Science is fact until it's disproven, as it is with many of these meds. There have been many drug withdrawals doing terrible damage to people. Chemo anyone? It's worked brilliantly for 40 years. Don't misinterpret my statements. And no need to get ugly. It's just a message board of a topic.
See if you can figure out just how full of crap you actually are.
Erm, changing diet won't resolve GERD. GERD is caused by a defect in the lower esophageal sphincter, permitting gastric contents to flow back up the esophagus.
I'm guessing that you think that an ulcer also can be treated by diet, to hell with the discovery and confirmation of H. Pylori?
Come join us in the 21st century! There are treatments for the former and a cure for the latter.
As for taking PPI's for years, been taking them for decades now, since their introduction. My father took statins since their introduction.
He lasted well into his 80's, would've lasted longer had he stayed on his meds while I was deployed. :/
Meanwhile, I've kept track of my calcium intake, my bones are fine, thank you, despite having hyperthyroidism.
Science is evidence based, woo is faith based. I'll stick with evidence based treatment (see h. pylori infection causing ulcers for an example).
Your first response sent me a chart that had nothing to do with my statement about the number one killer in American - cardiac disease. I wasn't
PPI's work but SCIENCE has shown them to be dangerous. Doesn't mean it will kill everyone but enough to make SCIENCE warn about it.
You are right about GERD but wrong that diet can't control it. Of course it won't control it for everyone, but for many, many it has. But you are free to take as many pills as you like.
"I believe in science and testing but if the scientifically tested mantra allows FDA approved medicines to killl someone in America every 19 minutes, you may want to question what medical science is today. You guys are now one of the top causes of death in America."
Here's what let's do Jennifer, should my physician prescribe a pharmaceutical, I'll take it. You on the other hand will take no pharmaceuticals ever under any circumstance. We wouldn't want you to be one of those 19 minute fatalities, right?. Let's see who lives longest, 'K?
While you're waiting to die, spend a little time combing through morbidity and mortality statistics over the last, say, 75 years. You'll find that many of the diseases that were big killers in 1950 are much less of a threat today. That includes cardiovascular disease. Pharmaceuticals aren't the entire story, but they've played an extremely important role.
The bear of it is, had the complaint been medical errors, I'd correct the error in statistic as a matter of course and agree that we can and must do much better.
Alas, instead, we get the anti-medicine trope *and* an invented number, pulled straight out of an unknown rectum.
Some medications can and do kill a patient, hell, sterile water can cause a patient to have an idiosyncratic reaction that could turn lethal. Should we then prohibit water from the entire planet?!
But, one educates a patient on what the most common side effects are and what bad reactions to watch out for (most, being allergies, some being oddly hypersensitive to the medication (for example, I'm so sensitive to statins, I can't take a useful dosage of the things at all - not even a lowest dosage partial tablet at once per week)).
Forewarned, if the patient noticed a problem, they're aware of the potential and they can discontinue and seek doctor's advice.
That's something I've done quite a few times over the years.
Agreed. Pharmaceuticals are regulated and dispensed only by a physician for good reasons. Sometimes patients die from side effects, some from dosing errors. But few of those patients were taking the drugs for sh!ts and grins. They were prescribed for a reason.
Nitwits like Jennifer and her statistical fantasies have no real grasp of medicine, much less of science. They are provocateurs interested in controversy rather than drug safety or, for that matter, improving patient health. That was the point of suggesting she eschew all pharmaceuticals.
I'm not on either side of this CLD debate...but I do know the funding for Lyme disease is completely inadequate at just about $25 million a year for anyone to take a definitive stance that the lyme bacteria can or cannot persist. The evidence is just not there yet for either side of the argument. As for those suffering from CLD, I think they should have the choice to take antibiotics...due to the morbidity of the symptoms...and there seems to be evidence patients are seeing relief.
"I'm not on either side of this CLD debate..."
There is no CLD debate. There is the pretty well understood science of bacteriology and immunology, and there is a group of people who want their preferred assumptions to be treated as reality.
As to funding, have you ever heard of the American Cancer Society, the American Heart Association, the Muscular Dystrophy Association, or any of the other private organizations that raise money for preferred research? Get busy.
Jay @ #133:
Now it’s no crime to be taken in by these people
It should be a source of shame, however, when the egregious conmen like Klinghardt are so shameless in their broad-spectrum scams.
I maybe guilty of being too nice, a true crime in this arena of insolence!
I shall have a flu shot and eat some Aspirin as penance, that should suffice. :)
Actually there is a debate. Some patients who are treated with the standard 3 weeks of antibiotics continue to experience symptoms, which can be quite morbid. There has been NO evidence to prove or disprove this is from a persistent infection, a reaction to dead spirochetes still in the system or an immune response to contracting lyme. Not every infection, lyme or otherwise, is cleared up by antibiotics, so the possibility of a persistent infection is real.
The funding for treatment of chronic or post lyme symptoms has been weak, usually involving treatment with a single antibiotic over a few weeks, instead of the long term, multiple antibiotic approach taken by the so called lyme literate docs. So the CDC relies on this inadequate research to claim that those who are suffering chronic/post lyme are no better off with or without antibiotics...so don't take antibiotics. But in fact, there are ample cases of people with chronic/post lyme symptoms treated with antibiotics who recover (using multiple antibiotics for many months), while those who are not treated continue to suffer, like Mr. Kristofferson had until he got treatment.
" There has been NO evidence to prove or disprove this is from a persistent infection, a reaction to dead spirochetes still in the system or an immune response to contracting lyme. Not every infection, lyme or otherwise, is cleared up by antibiotics, so the possibility of a persistent infection is real."
The way it works Sparky, is there needs to be evidence that it is from a persistent infection. That generally isn't difficult to demonstrate in the 21st century using PCR to identify organisms that aren't easily cultured. You can't just make sh!t up because it works with your preferred narrative.
"But in fact, there are ample cases of people with chronic/post lyme symptoms treated with antibiotics who recover (using multiple antibiotics for many months)"
And why do you ascribe this to long term antibiotic treatment rather than eating carrots or sleeping at night? Just because someone took antibiotics and got better does not mean that the antibiotics cured them. The more likely explanation in this case is regression to the mean.
But don't take my word for it. Read the Final Report of the Lyme Disease Review Panel of the Infectious Diseases Society of America - men and women who have devoted their lives to studying, diagnosing, and treating infectious diseases; men and women in whose financial interest it would be to find an infectious disease cause for the syndrome known as 'chronic Lyme.'
I don't necessarily disagree with the IDSA/CDC position...given the lack of adequate research of long-term antibiotic use. They state " On the other hand, in the case of Lyme disease, there has yet to be a single high-quality study that demonstrates comparable benefit to prolonging antibiotic therapy beyond 1 month." From what I've read, this is due to the fact that the studies did not involve long-term, multiple antibiotic cases....their hasn't been any research, other than patient cases, to show whether or not long-term antibiotics are effective at relieving the symptoms. So how could IDSA or the CDC recommend long-term antibiotics if there is no evidence (none proving or disproving its effectiveness)? So I agree with your point there needs to be evidence...and I go back to my point about there needs to be adequate funding for more research.
"I go back to my point about there needs to be adequate funding for more research."
In light of the complete absence of evidence of infectious disease mechanisms at work, I disagree. But there is nothing preventing an organization from raising as much money as it would like and spending it all researching long term parenteral antibiotic therapy for so-called chronic Lyme.
I invite you to read this excellent article in Lancet/Infectious Diseases. It puts to rest many of the misunderstandings that your comments suggest that you hold.
p.s.," This conclusion was reached despite the large volume of case reports, case series, anecdotes, and patient testimonials reviewed that attested to perceived clinical improvement during antibiotic therapy. Such evidence is by its nature uncontrolled and highly subject to selection and reporting biases. "
I believe IDSA own position on what is happening in confirmed cases of patients who had Lyme, were treated and continue to have symptoms is, they don't know.
Thanks for that link. I concur, there are several unhealthy groups, websites...promoting quackery and claiming every unconfirmed medical case is Lyme. But the article also supports my point, the research into long-term antibiotics for confirmed Lyme cases with chronic symptoms is not there. The article states data from two large studies that indicated no benefit from re-treatment with 90 days of additional antibiotics. This is a short-term study using one drug, most likely doxycycline.
Unreal. Those two studies are pretty convincing. But for some, and this goes beyond Lyme to include most of "alternative medicine," no matter the evidence, it is never enough. There should always be more research.
So apparently your notion is to treat speculatively until some imaginary bar of research is met.
That isn't science as I understand science and it isn't how I understand medicine.
Convincing that a s-t course of a single antibiotic is ineffective at treating chronic symptoms, absolutely. And I am not advocating any treatment protocol, simply calling for appropriate research.
You seem to have your mind made up, and not interested in a conclusive answer to this issue. Thanks again for the link.
A major problem with "we need more research" is that in the absence of any evidence of persistent infection in "chronic Lyme disease" patients, it would be unethical to do a research study that involved long-term antibiotic treatment. Such drugs can have serious side effects and spur resistance which might predispose patients to bad infections down the road.
I have yet to see evidence that "Lyme-literate" docs have gotten together to even attempt a properly controlled study. Seeing how much $$$ they're probably making off patients, money shouldn't be the limiting factor.
What is the nature of the semantics here? Chronic != longterm? A four week course of antibiotics is not longterm?
In the chronic Lyme world, no it isn't, Gilly. So called 'Lyme Literate Doctors' will keep their victims under treatment (and paying) for years.
Note that while I use Wikipedia for a reference source, it's as a source for citations. I'm one of the miserable SOB's that slap a citation needed flag all over articles with insufficient citations.
Let's see now, diagnostic criteria includes a positive culture for the organism to prove an infection. Obviously, it's an organism that we can culture!
Note that in the section I cited above has citations and that all culture attempts are negative.
I have a vague recollection that partial PCR hits were found in previously infected tissues, but only fragmentary results were found. That suggests dead/destroyed bacteria, otherwise full results would be reported from PCR testing. Hence, some theorizing that it's either molecular mimicry or continued immune response to antigens remaining after the bacteria have been killed.
Continued response would then eventually clear those fragmentary remnants, as there are no bacteria present to deposit new antigens.
And again, *every* "chronic Lyme" instance had a negative culture result.