'A dubious diagnosis'

Trine Tsouderos has done it again!

She is a one woman, woo-fighting machine!

She has taken on anti-vaxers.

She has taken on Dr. Oz.

She has taken on XMRV-->CFS.

And now shes goin after a rare wooity-- Chronic Lyme Disease:

Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.

But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.

Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter.

Lyme disease is caused by a totally normal, non-weird pathogen, Borrelia burgdorferi. Treat it with antibiotics, no big whoop. 'Flu like symptoms', that crazy rash, but you get better. But if you dont know youre infected and dont get treated, you start seeing 'late' Lyme disease symptoms, and things get crappier. Joint and muscle pain, heart trouble, bad stuff. But you still treat it with antibiotics.

And then you have Chronic Lyme Disease. People who dont feel well, Google their symptoms, and diagnose themselves with Chronic Lyme Disease. Sometimes they get a quack physician to diagnose them FOR REALSIES. Even though the 'tests' these labs use are not FDA approved, and there is often no evidence these people were infected with Borrelia burgdorferi at any point in time, ever. But they demand thousands and thousands and thousands of dollars worth of antibiotics. Turning themselves into little antibiotic resistance generating farms. Nice.

As Ive said before, Chronic Lyme Disease, under no uncertain terms, does not exist.

And Trine rightly notes, that True Believer patients dont think that maybe, just maybe their Google-fu is wrong. Maybe they are getting ripped off by a quack. Quacks with criminal histories, or are currently being prosecuted for fraud. No, they conclude that physicians, scientists, and The Government as a whole is 'out to get them'.

And just as a side note-- remember, folks, the WPI can 'find XMRV' in 'chronic lyme' patients too. *blink*

In this world, skeptics are vilified as part of a vast conspiracy involving tainted government agencies, drug companies, the media and conventional physicians. Scientific studies are cited but are invariably of poor quality or misinterpreted. Patients are directed to small specialty labs offering tests that can be misleading.

huh. Sounds so familiar for some reason...

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God your stupid.

Oh, the delicious irony.

By Bethistopheles (not verified) on 08 Dec 2010 #permalink

The comments to the article are fairly depressing, e.g.,

[My son] is in treatment now for Chronic Lyme, not just with antibiotics but with many other homeopathic drugs that can help fight the negative effects of the antibiotics (you failed to dig very deep with your reporting) He was much better managing the daily fatigue and extreme pain until he read your report.

That's right, antibiotics can be stopped in their tracks in less than four hours if you say something mean about them.

By Narad, the Man… (not verified) on 08 Dec 2010 #permalink

I've even heard of this woo spread to horses - arthritis and back trouble is nothing to do with overwork at a young age, or improper conditioning, or even just bad luck; it must be chronic Lyme's. And you don't take appropriate palliative measures to keep the horse fit as long as you can, you just tank it up on antibiotics until it breaks down completely.

By stripey_cat (not verified) on 08 Dec 2010 #permalink

Is god being used as a verb in the first comment? Perhaps a Boston accent.

Holy crap. More proof that there is no limit to the dumb shit people can make up. I'm glad folks like Trine are out there.

By the way, have a good safe trip - wherever you're going.

By MadScientist (not verified) on 08 Dec 2010 #permalink

denature - If it was a Boston accent, it would be "God, you ah wicked stupid".*

I had the real thing. Tick bite, huge bull's eye (ignore it for a few weeks, it really spreads). I was due to see my doctor for a regular visit, so I waited. He called me an asshole and prescribed antibiotics. Ten days later, all gone.

My niece went to a doctor for chronic fatigue. Everyone told her he would say she had lyme disease and put her on antibiotics for three months and to hell with the consequences of taking antibiotics for that long. My niece went anyway, took all the antibiotics anyway, never had any change in her symptoms.

I truly hate the Chronic Lyme Disease delusion. I have seen first-hand how its "treatment" can be abusive to children.

By Anonymous (not verified) on 08 Dec 2010 #permalink

My favorite chronic Lyme stories:

one woman claimed she, her husband and daughter all got Lyme disease visiting a Caribbean island (forget which one, now), and it was the KILLER MOSQUITOS (yes, she actually capitalized the words in her appeal letter) gave it to them.

Another woman claimed that she gave it to her husband through sexual activity and transmitted it to her infant child through the placenta.

Sad, actually. Some of these people really ARE ill, but have locked on one diagnosis and are not getting treated appropriately. And I have seen all the quack lab tests you ever would want. Also have read the Marshall Protocol. Very scary stuff out there for the True Believers (TM).

I've seen CLD used in administrative hearings to justify everything from sexual harassment to death threats.

By Prometheus (not verified) on 08 Dec 2010 #permalink

I have written about what I think "chronic lyme" is, it is the same as Morgellons, CFS, fibromyalgia and pretty much all of the other somatiform disorders. It is what happens if you are in a low NO state for too long and you end up compromising your mitochondria number. Mitochondria have a finite lifetime, a few weeks, and if they are not replaced in that time frame they get "tired" and start producing more superoxide (which lowers the NO level and makes the low NO state permanent.

It is also the mechanism for the fatigue associated with HAART therapy in HIV. The problem in HAART is the reduction of mitochondria DNA replication. If you don't have enough mitochondria, you are going to be tired and the organs that have a high metabolic capacity (brain, liver, heart, kidneys, muscle) are not going to work right.

I think the reason that antibiotics seem to give some relief is due to the placebo effect (which raises NO levels) and the Herxheimer reaction when bacteria are killed. It isn't bacteria from an infection, it is gut bacteria.

Some antibiotics inhibit mitochondria protein synthesis. They will likely make any somatiform-type disorder with fatigue symptoms worse.

Go Trine!

And thanks Erv for keeping us in the loop.

What are we going to do about this? As some people have commented on our blog, our message is not getting out into the mainstream.

We need to host a talk show.

Lets find a benefactor. Bill Gates?

Who wants to be the host?

"Another woman claimed that she gave it to her husband through sexual activity and transmitted it to her infant child through the placenta."

Could've been worse. She could have had cooter Morgellons.

You ain't seen CLD misuse until you work at a children's hospital in Connecticut. yowza

Jon H@#14

"Could've been worse. She could have had cooter Morgellons."

I probably have a second cousin who is marrying someone named Cooter Morgellons right now.

By Prometheus (not verified) on 09 Dec 2010 #permalink

Another woman claimed that she gave it to her husband through sexual activity and transmitted it to her infant child through the placenta.

I once got gonorrhea from reading a magazine article about men who have unprotected sex with crack addicted prostitutes.


You state: "Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics."

Clarification please: do you mean "usually, or do you mean "always"? If you really mean "usually", what is the resulting condition in those unusual cases when the initial round of antibiotics fail to effect a cure? A second round of antibiotics? A third?

re 'Clarification please'

I think that this is something no-one quite knows. I looked in to this a while back and there was some work on 'post-Lyme syndrome' - with some real Lyme patients seeming to stay ill following treatment. It could be that this is just another post-viral CFS type thing, but there doesn't seem to be much work on it. The IDSA guidelines seemed a bit sceptical, but also laid out how post Lyme syndrome should be distinguished from the Chronic Lyme stuff they're firmly opposed too.

The trouble with a diagnosis like CFS is that no-one really knows what distinct conditions could be in there. When I looked into chikungunya virus following ERV's post on the discovery that it was able to hide in patients cartilage to maintain a chronic infection, I found a paper arguing these symptoms were the same as is found in other cases of post-viral CFS.

Trine said "Tell people often enough that their pain is in their head, that their debilitating symptoms are medically unexplainable, and they will endure just about anything for a solid diagnosis and a possible cure."

Science is better at disproving things than proving them, and when there's no good evidence of a cause for patients symptoms a presumption of psychological problems will often be made by their doctors. I'm not surprised that this is seen as unreasonable by patients, who then stagger off with a new distrust for mainstream medicine and a desire to find an explanation for their symptoms. There are always going to be those willing to take advantage of such patients.

One of my old coworkers had a CFS "diagnosis" I don't know who she was seeing for medical care but the number and variety of pills she was on was astonishing. It was at the point where I am sure the drugs where at least half of her problems. At one point she tried to convince me to get some test for CFS because I was sore and stiff. She did not believe it could be the 10 hours of Judo a week. Some folks just need to have something wrong with them.

By the backpacker (not verified) on 10 Dec 2010 #permalink

Quacks with criminal histories, or are currently being prosecuted for fraud.

Of course this becomes evidence of a conspiracy to hide the TRUTH.

Just when it looks like we have turned the corner with respect to excessive antibiotic use, something like this comes along.

By Militant Agnostic (not verified) on 10 Dec 2010 #permalink


Basically, in Lyme disease, it appears that you can destroy/inactivate/attenuate all the bacteria with antibiotics without clearing all the symptoms. The debate comes when the CLD folks say that's caused by "chronic" infection with the bacteria still hanging around. There isn't any evidence for that.

By Lyme Research … (not verified) on 10 Dec 2010 #permalink

It's not quite as simple as it's made to sound here.

It's clear that "chronic Lyme disease" is being over-diagnosed and over-treated, to the detriment of all.

Nevertheless, (as always, I make use of decent Wikipedia articles which site an adequate number of original references) -

1) Lyme disease, especially untreated, has a vast and confusing number of well documented manifestations and symptoms http://en.wikipedia.org/wiki/Lyme_disease

2) Infection can be a trigger for certain syndromes which seem to have an autoimmune basis http://en.wikipedia.org/wiki/Guillain_Barre, http://en.wikipedia.org/wiki/Bell's_palsy

3) Adequate treatment usually prevents this, but other spirochetal infections can be multi-recurrent http://en.wikipedia.org/wiki/Syphillis

I am NOT in any way defending nonsense diagnoses of CLD or over-treatment, especially with IV antibiotics (!), and rapid recognition and good initial treatment is the way to deal with Lyme disease.

However, Lyme disease was a hard discovery (the causative agent was very hard to culture and identify with traditional techniques) and is a complex disease.

Is this actually considered a science blog? The blogger rants his opinion offering no science at all other than referencing an article written by a food reporter that is one stinky mess of lame journalism and claims this is science? No critical thinking here, just dogmatic repetition. Try again please...

By QuackAttack (not verified) on 14 Dec 2010 #permalink