As summer approaches and people spend more time outdoors, many parts of the country will start to see cases of Lyme disease. It is carried by deer ticks and is especially common in the Northeast. Tick bites often go unnoticed, but the rash of Lyme disease is pretty characteristic and occurs in about 70-80% of those who are infected.
Erythema migrans, the typical rash of Lyme disease. Source.
It's easily cured with antibiotics, but if untreated can have significant complications, such as arthritis, and various neurologic problems. As most of my readers know, there is also a movement that supports a diagnosis called "chronic Lyme disease" (CLD), which is, in most cases, not related to Lyme disease at all.
The controversy regarding CLD can get a bit bizarre, but the core reality is that real people are suffering, and real people are being misled. When a set of protean and debilitating symptoms are mislabeled as CLD, other diagnoses and treatments are left behind, and patients are often subjected to invasive and ineffective treatments.
Those of us who practice science-based medicine are often the targets of the CLD activists, and CLD activists are often our targets. I am very critical of health care professionals who mislead patients (intentionally or otherwise), and I receive plenty of hate mail from readers who think I'm being dismissive of their suffering. But I am not critical of patients who believe they have this disease. They are the victims of this controversy. And when the arguments and strategies get ugly, it is they who suffer. That is why I was especially angered by the email I received earlier this week.
I received this email in the account I use for blogging. Here is the full text:
Open Letter to the Mental Health Community from the Infectious Diseases Society of America
May 24, 2010
Delusional Chronic Lyme Syndrome (DCLS) affects tens of thousands of new victims every year. This debilitating mental illness is destroying the emotional and financial livelihood of families across our country.
As the Infectious Diseases Society of America (IDSA), we see firsthand the damage inflicted by this illness. Its sufferers frequently seek medical help from our member's practices; however, we are powerless to cure its underlying roots, as this mental illness exists well outside our domain knowledge of pathogens and human infection. Therefore, we are strenuously imploring the mental health community to take up research action in earnest. After our Lyme disease treatment review panel concluded last month, it is now indisputably self-evident that DCLS has reached epidemic proportions and its yearly growth rate is alarming.
The historical duration, demographic breadth, and geographical extent of this mass psychogenic illness is a fascinating and unprecedented event in the history of our country, perhaps in the history of mankind. It has persisted for four decades, affects all ages, and exhibits an intriguing geographic clustering phenomenon. The intensity of its delusions drives sufferers to such extremes as self-mutilation via catheterization and sometimes suicide. Currently, there is no formal diagnostic classification or treatment regimen for DCLS. Meanwhile, this is empowering opportunistic medical doctors to prescribe improper and costly pharmaceutical treatment. This only furthers delays patients from seeking out the mental health professionals they so desperately need. Unfortunately, general awareness within the mental health field is virtually nonexistent.
As president of the IDSA, I bear some responsibility for this ignorance, by not encouraging more cross-discipline pollination of our medical information. As this crisis has illuminated, the IDSA has not been true to its stated core value to "promote collaboration and cooperation among other professional colleagues." In response, I passionately pledge to our members and public constituents to reverse this myopic trend within our esteemed organization.
IDSA member, Dr. Gary Wormser, has been a tireless crusader in promoting awareness of this emerging illness. I owe him immense gratitude for keeping true to his values as a physician in the face of sometimes caustic opposition to his fresh ideas. We beseech mental health researchers to carry on the torch ignited by Dr. Wormser and create pervasive, national recognition for this destructive disorder. By doing so, you will bring hope and compassion to those afflicted by this strange and insidious illness.
To actualize this crucial transfer of information, the IDSA will be hosting free workshops on DCLS for mental health professionals at our upcoming annual meeting. This meeting will be hosted on October 21st through 24th, 2010 in Vancouver, Canada. We look forward to bringing the mental health community up-to-date on all relevant research and known data for DCLS. For more information, please contact the DCLS workshop coordinator at (xxx) xxx-xxxx.
Richard J. Whitley, MD
President, Infectious Diseases Society of America
I'm not sure what the purpose of this email is (and it is not from the IDSA). If it is a joke, it is a cruel one. It seems to me more likely, though, that this was written by a chronic Lyme activist as a piece of "false flag" agitprop. It also seems to particularly target Dr. Wormser, a Lyme disease expert who has worked on IDSA Lyme disease guidelines in the past. Wormser has been the target of barely comprehensible hate-filled rantings on various chronic Lyme disease websites. I don't think this is a coincidence.
I read this as a "Dr. Wormser and the IDSA think all the chronic Lyme folks are crazy," something they most assuredly do not believe.
This is what the IDSA actually says about chronic Lyme disease:
In rare cases, people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, typically generalized pain, joint pain and fatigue. These symptoms have been interpreted by some to suggest the presence of chronic Borrelia burgdorferi infection.
However, an extensive review of scientifically rigorous studies and papers available to date, has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.
There is no doubt that patients with persistent symptoms are suffering, but many report non-specific symptoms that also are associated with a number of other medical conditions. To be certain they receive the proper medical care, people who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the original diagnosis of Lyme disease was accurate or if they may have a different or new illness.
The CLD activists would like to paint the medical community as a gang of heartless and cruel thugs beholden to...I don't know, someone bad, though. The truth is somewhat different, and it appears that they are now trying to create their own truth. By and large, doctors are compassionate and became doctors to help people. We recognize that people are suffering, and also recognize that inventing a diagnosis and treating people improperly does not help. But helping someone who has been given a fake diagnosis can be a daunting task, and it is not made easier by cruel hoaxes.
I posted a variant of this comment over at SBM.
This is very disturbing. These people are not helping and they are not interested in helping. My guess is that they were trying to set PalMD up, sending this to him thinking (via projection because that is what they would do) he would write it up in glee, that here is a whole conference devoted to DOP by a different name, and then they would say âgotchaâ. I think it very likely is a false flag operation as you speculate.
It didn't work, and won't work because PalMD's goal is not to win any internet arguments just for the sake of winning, but rather to do right by his patients, actual or virtual, as is the goal of all good health care practitioners. Doing right means getting a reliable diagnosis to determine a reliable treatment via reliable processes. The key to all of this is reliable, an unreliable diagnosis is worse than no diagnosis.
I think that all of these somatiform disorders have the same root cause, low NO/NOx status. I discuss the disorder called Morgellons on my blog and why the term âchronic Lymeâ doesn't make any sense.
I think that calling the symptoms psychogenic is incorrect and is unfortunate in that because of the stigma associated with mental health disorders (I know that psychogenic does not mean âcrazyâ, but these people don't), people refuse any treatment they consider to have a psychiatric component (although all treatments do, the effectiveness of a good bedside manner is mediated via psychogenic processes). I see the itching of Morgellons as being due to high mast cell sensitivity, which may be ameliorated by SSRIs, which seem to work in the itching of liver failure which I think is due to the same mechanism.
The sensory systems that detect injury and transmit signals of pain to the CNS are complex and not well understood. The system that does that is distributed, that is there are local sensors, nerves that transmit those signals, and neural networks that interpret those signals and produce an output. For such a system to work together âin syncâ, it must be regulated to work together âin syncâ. An extremely important part of any such system has to be automatic âgainâ control, that is the various systems must be regulated (in real time) to keep the entire system in the âactive rangeâ, where it can produce and transmit differential signals to allow the organism to perform differential actions based on those differential signals.
One of the generic systems for automatic âgainâ control is via the NO level. In the peripheral tissues, low NO increases the sensitivity and so increases the âgainâ. For example mast cells are made more sensitive to degranulation by conditions of low NO. The gain in the immune system is increased by low NO, the initial respiratory burst of immune system stimulation causes local low NO which increases the âgainâ.
In the CNS, it is high NO that increases the âgainâ. The sensitivity of different brain regions to neuronal activation is increased by NO, that is why there is nearly a 1-to-1 correspondence between the vasodilatation observed in fMRI and neuronal activity. The high NO levels that cause the observed vasodilatation also cause increased neuronal sensitivity resulting in increased neuronal activity in those regions.
Under conditions of fight or flight, there is a systemic lowering of NO/NOx levels. This increases the sensitivity of peripheral systems to pain, so that injury signaling is better. There is also a change in CNS processing of pain, endorphin signaling modulates the pain signaling so that only the most severe injuries are noticed, and the pain signals do not overwhelm cognitive capacities to deal with those pain signals while you are doing more important things (like running from a bear).
I think this is why many of the symptoms of Morgellons mimic the symptoms of drug abuse/drug abuse withdrawal. Itching of the skin is a symptom of cocaine, alcohol, opiate, amphetamine abuse/withdrawal. I suspect that the drugs of abuse reduce the âgainâ in the CNS so that you feel no pain, so the body responds by increasing the âgainâ in the peripheral systems until you can feel pain (not being able to feel pain is to dangerous a condition to allow to continue). When the drug is withdrawn and the âgainâ in the CNS goes back up, then the âgainâ in the peripheral system is too high and so everything hurts until the automatic âgainâ control resets itself. The time it takes for that to happen is called âwithdrawalâ.
If the âgainâ in the peripheral system is too high because of low NO in the peripheral system, then the only way to fix it is by reducing the âgainâ in the peripheral system. Decreasing the âgainâ in the central system with opiates will only work until the body resets the âgainâ, otherwise known as âtoleranceâ.
I completely agree, this is a cruel hoax. Who ever did this is not a good health care provider.
There's a particular writing style that this email follows. I don't know if it has a name or if anyone has studied it, but I "know it when I see it"!
It includes exaggeration ("The historical duration, demographic breadth, and geographical extent of this mass psychogenic illness is a fascinating and unprecedented event in the history of our country, perhaps in the history of mankind.")
It's flowery, wordy, too specific in one place while too vague in another. Professionals in any field seldom write in this style.
I learned only this evening of the existence of something called the 'glass delusion'. It seems like it could have been a similar type of thing to DCLS, but it affected people who lived a few centuries ago, then mysteriously went away. How does this stuff happen? Is it the same mental illness, with a cultural aspect tacked on? Or something different?
Let me make clear that there is no such thing as "DCLS". The rest of the question is very interesting. If you search this blog, i discuss it quite a bit.
As someone with lingering symptoms from a bout of lyme disease, I can see where the CLD people might have jumped the rational thought tracks. I had lyme disease. It developed to the arthritis stage. I went on antibiotics and got better. As I've had pointed out to me though, I had really bad arthritis in my knee for a while. It mucked the cartilage up a bit, and makes things finicky when the barometric pressure changes. I'd like to point out however that this in no way means I still have lyme disease.
And that is where they jump the tracks. I had a thing. it did some damage. I essentially have a scar. A scar is not an open wound. If you have new symptoms, maybe it's something else. Considering Chronic Lyme Disease tends to have such a crazy litany of symptoms, there's plenty of other possibilities.
I have a friend who is completely convinced by the whole chronic Lyme thing. As far as I can tell, she had Lyme, it was missed for many many years, and she suffered a lot of damage from it.
Not being a doctor, I can't tell if her problems now are that damage or if she has something else, but it pains me to hear her parrot the Chronic Lyme mantras. I worry that she might have another illness that isn't being properly treated.
I can't figure out how to bring up the possibility without her seeing me as someone who thinks she's crazy. I don't think she's crazy.
I posted on the topic of CLD very early in my blogging career (here; unfortunately the comments didn't come over from Blogspot when I jumped platforms; there were a lot). Nothing much seems to change.
Donna B., I completely concur with what you speculate. I see a familiar style there too.
I have thyroid disease and thatâs one that happens to have a whole fringe element attached to it, like Lyme disease does. Itâs one medical cult onto itself with members ranging from those with no verifiable issue, to having an issue that only requires periodic monitoring, to having a minor issue that requires a low dose of medicine with periodic monitoring. Yet, they all claim to be crippled (their word) and suffering (also their word) and collectively campaign to demand that doctors forget everyone and focus exclusively on them. Of course, there is an ulterior motive component involved. That being: Get drugs, get drugs, and get drugs! The members do tend to traipse back and forth between thyroid disease, (the non-existent) chronic fatigue syndrome, (the old standby) fibromyalgia, and Lyme disease.
Anyway, many of those involved in these kinds of medical cults tend to write in the same style as above.
In another place I had seen this same letter someone was wondering if it was written by a doctor as a joke â perhaps stemming from the frustration of dealing with a particular type of patient. I donât believe that to be the case...but if it were, it definitely would be understandable.
My aunt believes that she has CLD. In fact, she's currently in town getting biweekly Bicillin injections from an NP or ND who specializes in CLD. I'm trying very hard to be good and not challenge her on this since the last time someone (my mom, her sister) challenged her about a deeply-held belief, she stopped talking to her for 10 years (really long story on that one). My mom has bought into this as well. She was an ND, but has retired. Mom is not completely off the deep end (I got all my shots, she took me to the ED when I had appendicitis, she gets all her shots for her traveling, and she is up to date on her other preventative care like colonoscopy, though she likes her supplements), but she's supporting my aunt.
What gets me is that my aunt does have serious medical issues, like autoimmune hepatitis, chronic fatigue syndrome, and a frozen shoulder so she can't play her instrument of choice as well as she used to. Yet, she's so focused on the CLD that she will not entertain any other ideas that her symptoms could be due to something else (like depression or deconditioning or some combination of other stuff). She feels better when she gets antibiotics and worse when she doesn't. Given that she did not reason herself into this position, I don't know that I'll reason her back out of it. I'm going to send her to a colleague of mine when she moves to town more permanently who might keep her from more of the crazy stuff... maybe... My aunt does get care for her medical issues from MD's (like the local liver specialist about her autoimmune hepatitis), but she's definitely deep into the woo. What's interesting is that their father, my grandfather, was a small-town general doctor for 55+ years. I sometimes wonder if that was part of what drew them away from medicine (though there's a lot of baggage with their relationship with their father that may also be playing a part).