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Do you have Forer’s Disease?

via Flickr, by SuperFantasticA hidden disorder may be making you ill. It’s quite common, but many people don’t know they have it and conventional doctors tend to ignore it. Medical tests fail often enough, turning up negative while patients continue to suffer a plethora of symptoms. Few people will have all of these symptoms, and most symptoms will be intermittent, and at least partially resolve when the patient is more active, so there will be great variability between patients. An estimated 80% of people experience Forer’s Disease at some point in their lives, yet it is frequently overlooked and misunderstood by the medical community. Forer’s Disease is becoming a popular topic in the medical community; as a result, it is important to recognize the symptoms of this particular condition. Sufferers typically experience a wide assortment of symptoms, and it’s important to learn how to recognize them.

Most sufferers of Forer’s Disease experience some or all of the following symptoms:

  • Fatigue
  • Backache
  • Mood swings
  • Digestive upset, such as nausea, indigestion, and gas pains
  • Headaches and migraines
  • Insomnia
  • Low energy/malaise
  • Joint pain
  • Decreased libido
  • Constipation
  • Skin irritation
  • Memory problems
  • Cravings, especially for sugar, salt, and fat

Sound familiar?  Of course it does, because the actual condition that leads to these symptoms is “being human.”  Pretty much every person (in an affluent nation at least) will experience many of these symptoms at some point in their lives.  And people are more likely to experience many of them during periods of high stress or, let’s face it, when we’re getting older.

I borrowed the name Forer from the Forer Effect, in which subjects assign a high level of accuracy to a list of vague and generally applicable descriptions, when the list is presented as a personalized profile of the subject.  It is most often used to discuss horoscopes and personality tests (“You are a caring person, but sometimes you fail to live up to your own ethical standards.  You enjoy being with other people, but sometimes feel shy and reticent”), but I think a similar effect occurs when someone suffering from obnoxious symptoms reads a list like the one above, paired with a proffered cure.  The list of symptoms seems to be so accurate, even tailored to the reader.  It’s easy to believe that the web site or book you’re reading is accurately diagnosing what’s wrong with you.

Deliberate quacks and misguided natural health gurus alike have a tendency to cobble together a similar list of “if you’re human you have them” symptoms and assign a disease to them.  If you have many of the above symptoms you qualify for Systemic Yeast, Multiple Chemical Sensitivity, Gluten Sensitivity (with negative Celiac test), Subluxations, Adrenal Fatigue, Electromagnetic Sensitivity, and Wilson’s Temperature Syndrome, and probably a dozen more fad diagnoses that have come and gone over the years. The problem is that aggregating a bunch of common symptoms and deducing a particular disease isn’t reliable.  As you can see, it casts far too wide a net.

It is true that there are established, scientifically supported disorders that create symptoms on the Forer’s list, and which don’t have a definitive test for diagnosis. But in such cases, emphasis is placed on ruling out other possible causes before diagnosing something like Chronic Fatigue Syndrome or Depression. On the other hand, quackish sources will actually recommend the opposite:

First, list every single symptom that nags you, whether sporadic or chronic. Don’t make assumptions, like my back problems are from sitting too much. Just list them without trying to explain them away.

(From the Gluten Sensitivity link, above.)

It can be particularly confusing because many of these suspect symptom-list descriptions promote disorders that play on the edges of well-established diseases, such as hypothyroidism or celiac disease.  And it is true that medical science doesn’t always get things right (to say the least!). So what do you do to try to feel better? Personally, I think there are two vital steps to take before you put yourself on a highly restricted diet or other regimen that may cost money or interfere with quality of life.

First, see a medical doctor who is trained in ferreting out actual, verified disorders.  And of course, if a doctor doesn’t take your symptoms seriously when you say they are causing you distress, find someone else.  A bad doctor may say, “Systemic Yeast isn’t real – it’s all in your head!”  A good doctor will say, “Systemic Yeast isn’t a recognized diagnosis, but we do need to get to the bottom of the recurrent vaginal infections, fatigue, and stomach pain that have been bothering you.” It’s also important to remember that more than one thing could be wrong.  Recurrent vaginal yeast infections might turn out to be a misdiagnosed bacterial infection, fatigue may be from low Vitamin D levels, and stomach pain could be from lactose intolerance.  If you assume at the outset that an entire list of disparate symptoms must spring from a single underlying disease, you could be missing some obvious answers.

Second, go ahead and follow the universal recommendations among healthcare professionals of every stripe: eat a plant-heavy diet full of fruits and vegetables and low in processed foods.  Get moderate exercise on a regular basis.  Drink water when you’re thirsty. Practice good sleep habits and give yourself enough rest time. Pretty much everyone agrees that these practices are the foundation of good health, and introduce little to no risk. Adopting these habits is likely to ameliorate most of the symptoms above, and it’s no coincidence that a lot of cures proposed for Forer’s-like diseases happen to introduce some or all of them. Unfortunately they also tend to be so restrictive that they detract from quality of life, and go hand in hand with alt-med supplements or treatments that likely do no good and at least cause the harm of extracting money from you needlessly.

(N.B.: I also borrowed all the scare-language in the first paragraph from the various malady web sites I linked to.)

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Kills germs on surfaces – so we should definitely drink it!

“If it’s not accepted as medicine, it will cure you!”

This seems to be the mentality of many folk who extol the virtues of bizarre home remedies.  These people are the most confusing to me.  I can kind of understand where you’re coming from if you want to avoid pharmaceuticals, pesticides, toxic cleansers, and so on.  Many people are trying to live a “natural” life, and while that may be a  fantasy in some ways, it does make sense to eat whole foods, avoid unnecessary drugs, limit exposure to pesticides, plasticizers, and other chemicals that may cause problems for our bodies or our environment, and even to use home-grown herbs to treat the symptoms of mild, self-limiting diseases.  Hell, I can even understand the use of homeopathy to an extent – it’s billed as a mild, side-effect-free to make sure the body is working at its best.  It was specifically formulated as an alternative to toxic and dangerous treatments used in the 18th century.  People like to think that there’s something more natural, that won’t cause bad side effects, that they can use to cure themselves.  That’s understandable.

But then there’s this subset of people who seem to latch on to a particular cure which isn’t herbal or natural in any way.  It may be the product of standard industrial processes or pharmaceutical research.  But the key to this woo is that the substance not be used as intended by mainstream science.

The most extreme case I can think of is bleach.  Bleach is a very mainstream product.  It’s manufactured by big companies.  It’s corrosive.  It’s a substance often avoided by crunchy people due to its potential to harm humans and the environment.  Bleach has been shown to be very effective at killing microbes on surfaces however.  It’s recommended for cleaning in the home for HIV patients because it kills bugs so well.  Bleach disinfection is even promoted as a stopgap method of killing HIV in heroin syringes if no clean needles can be obtained.

Somehow people have extrapolated all that microbe-killing power to a notion that ingesting bleach can cure diseases in the body.  “If bleach kills HIV in a syringe, it will kill HIV in my bloodstream” is how the thinking goes.  It almost makes sense, if you ignore the fact that drinking bleach will cause major burns in your esophagus, stomach, and intestines, and will kill you long before it would provide any theoretical benefit.

Similarly, silver can be used as an antiseptic and is used in topical application to prevent infection.  Some cranks have made the “if it’s good topically, it must be great ingested” leap and advocate ingestion of colloidal silver to cure, well, everything.  However, there’s no evidence showing ingestion of colloidal silver treats any disease or condition.  It’s probably not as bad as drinking bleach as far as immediate injury, but colloidal silver can cause kidney damage and seizures.  Far more entertaining is its celebrated, non-toxic side effect, argyria.  It turns your skin and mucous membranes gray-blue.  So if you want to get no benefits whatsoever, risk major organ damage, and wind up looking like a sick smurf, colloidal silver is for you!

Here’s a quick list of other products of good old toxin-laden, money-driven, factory-produced technology, that are hailed as cures for things that science doesn’t use them for:

Dichloroacetate, allegedly a cure-all for cancer, in reality a substance that might fight cancer, but may be too toxic for use in the body.

Laetrile, another cancer “cure.”

F***ing Magnets, how do they work?  They don’t.

Vicks on your feet to stop a cough.

Tagamet for warts.

Aspirin dissolved on a sore tooth, rather than ingested.

Milk of Magnesia for acne.

Listerine for everything.

I won’t pretend to understand all the psychology underlying this behavior of off-label use as alternative medicine.  But it seems to me that a large part is just desperation – when the doctor only has difficult, complex, or slow-working answers, these remedies can make people feel like they’re fixing the problem.  And certainly the idea of getting one over on The Man is appealing.  The medical-industrial complex may want to charge you a lot of money for a treatment that might or might not work, but you can show them up by just rubbing Listerine on [body part] and fixing yourself!  That sense of control is really appealing.

And ultimately, I think Mark Crislip has a large part of the answer:

As I have discussed before, users of alternative therapies are not comfortable with nuance and subtlety, and,  I think, prefer black and white binary approaches.  Mercury in one form is toxic, so all forms of mercury are toxic.  Some forms of silver are beneficial, so all forms of silver of benefit, including colloidal silver. The inability to deal with shades of gray is a hallmark of many forms of alternative therapy.

Nipple Yeast, Part 2 – Alternative Treatments and What’s in Them

OK, this is what you’ve been waiting for – “natural” and alternative remedies for candidiasis! (Part 1 is background and doctor-style remedies.)

First up, gentian violet.  This is renowned for its quick-acting slaughter of all things fungal, and it’s often recommended in crunchy circles.  Whereas most yeast treatments take at least two weeks, this takes about three days.  The one big drawback is that this stuff is seriously PURPLE and stains everything it touches. (That’s my daughter with a purple mouth, purple thumb, and slightly purple pajamas thanks to GV.)

Want to guess where gentian violet comes from?  Nope, it’s not extracted from organically grown violets.  Nor from gentian flowers.  It’s an extract of coal tar.  It was first used as a dye, but then users noticed when they used it for gram staining microscope slides, it killed all the wee beasties they were trying to look at.  (And yes, I find it a bit hilarious that there are people who decry mineral oil use on the skin, but who happily slather the insides of their infants’ mouths with extract of coal tar.)

The other potential risks of gentian violet are mouth ulcers and a possible increased risk of cancer.  But that’s based on a study of ingestion of large amounts by mice.  Honestly, if I had it to do again, I would still use gentian violet for nipple yeast.

Next big natural cure: grapefruit seed extract (GSE).  Again, this seems to be a pretty powerful antimicrobial agent.  There is research showing that its efficacy is comparable to that of bleach in killing microorganisms.  And because it’s derived from grapefruit, a lot of moms feel more comfortable using it on their nipples and in their infants’ mouths.  But that’s where we need to back up the truck – the reason this stuff is so powerful is that it is either contaminated with or nearly chemically identical to well-known antimicrobial chemicals Triclosan, benzethonium chloride, and benzalkonium chloride.  The latter are often referred to simply as BAC.  One study found some commercial GSE preparations contained Triclosan.  The others typically find the spectrometry is pinging for BAC.

The main manufacturer of GSE, Nutriteam, Inc., maintains that their product is not contaminated with BAC.  They say their GSE is just similar to BAC, so it confuses the spectrometer.  And well, I kind of believe them.  My conclusion is that their product isn’t contaminated.  It’s just that it is for all intents and purposes BAC.  I don’t know how BAC is typically manufactured, but I suspect you can make it using grapefruit as a raw material.  And Nutriteam themselves call GSE a “quaternary compound” (just like BAC is), and describe a manufacturing process that sounds pretty industrial and non-crunchy.  It sounds like they’re doing pretty typical chemical synthesis to me.  And they wind up with a substance that tests and works just like BAC, only they call it a dietary supplement so they don’t really have to comply with any regulations, and they slap a label on it that makes it sound like something natural, not a “chemical” or gods forbid, a “toxin.”

Now, BAC isn’t actually evil, necessarily.  It’s used as a preservative in cosmetics and in anti-bacterial wipes.  Hell, if you’ve ever given a urine sample, you have probably smeared BAC all over your naughty bits.  And since many people have used GSE without ill effects (beyond a bitter taste and the possibility of dry, peely skin), I wouldn’t be averse to using it myself if I ever got nipple yeast again.  I really don’t like that the manufacturers are getting away with fooling people, but look at my previous yeast post - it feels like rubbing your nipples with broken glass.  For me, I’d hold my nose and use GSE since it makes that go away – quickly, for both me and my nursling, without having to get a prescription and explain to the doctor why Nystatin doesn’t work and how much Fluconazole you really need to prescribe, and so on.  But I do think moms deserve to know the real story before they decide whether to use it.

So there you go, two wildly popular crunchy alternative yeast treatments, that aren’t really that crunchy.  But I’d still use them!

This is why we get angry

A self-styled “holistic healer” injures several and nearly kills one with arsenic-loaded remedies.  (To be fair, the remedies were indeed all-natural.)

A homeopath and his wife allow their infant to die a slow and tortuous death of infection due to severe eczema, because they believe homeopathy will cure her, despite repeated warnings from doctors.

A woman eschews medical treatment for her breast cancer, opting for The Secret and a quack’s ideas about acidity causing disease.  She dies.

Lots of people believe that alternative treatments will extend their lives or even eliminate their cancer, and some of them give up entirely on conventional medicine.  It’s one thing to decide that the cost of chemo is too high and make an informed choice to live as well as possible.  It’s quite another to rely on alternative treatment to save you, then die anyway.

People go to a chiropractor to get pain relief, but may wind up with a fatal stroke,

Or the chiropractor might tell the person to stop taking her medication for epileptic seizures, resulting in her death.

People take “dietary supplements,” which are practically unregulated by the FDA, and wind up dying, or if they’re lucky, just going into liver failure.

This isn’t to say that conventional medicine is risk-free.  But typically there is a good chance a remedy will actually do something beneficial that will balance out the risk.  With alternative remedies, usually the most you get is placebo effect.  Sure, regular medical practice is not always actually evidence-based, but at least that is the goal.  With alternative practices, there are no standards whatsoever, and perhaps more importantly, there is no mechanism for improvement.  There can’t be when proponents take a “heads I win, tails you lose” approach that rationalizes every failure and lauds every apparent success.

For more examples of the dangers of woo belief, see Whatstheharm.net.

Quick and Easy Guide to Spotting Altmed Bunk

(Another busy day today!  I look at it as an opportunity to recycle – an oldie but a goodie.)

Immersed in the world of breastfeeding and attachment parenting as I am, I am unfortunately bombarded with loads of alternative medicine hogwash. As I dutifully (and usually futilely) research and dissect the latest advice from someone’s naturopath, or the information they got from their chiropractor, I have noticed certain signs that will cause my bullshit meter to bury the needle. What follows isn’t a detailed discussion of why altmed practices are unscientific, or how to decide if a research study is reliable, or a treatise on the philosophy of science. It’s just a quick and dirty list of features that anti-scientific quackery tends to share.

1. Most of the hits on Google are sites that promote or sell the product in question. Typical site names are phlebotinum.com, phlebotinum-advisory-group.net, drlaceyunderall.net, yournaturalhealth.com, and so on. Many strive to look like health information sites, but if they have only good things to say, and an easy link to purchase the product, you can bet it’s just a commercial site shilling. If you get a high proportion of hits like Webmd, Mayo Clinic, National Institutes of Health, and maybe stuff like CNN or ABC stories, it has a much greater chance of being a real thing.

2. The remedy is promoted as a solution for vague and ubiquitous maladies. Usual suspects are fatigue, insomnia, body aches, headache, mood problems, low sex drive, weight gain, nausea, and constipation. Now these can be real symptoms of real problems. But when you see a product promoted as solving a long laundry list of these issues, it’s time to raise an eyebrow. These symptoms are typically experienced by most people at least some of the time, especially in a culture plagued by poor diet, low rates of exercise, too little sleep, social isolation, and chronic stress.

Most of these symptoms are self-limiting, or can be alleviated by lifestyle change. But most people don’t relish a prescription of “eat plenty of fruits and vegetables, exercise regularly, and get 8 hours of sleep a night.” Lifestyle changes are difficult to initiate, harder to maintain, and are frankly a total drag. But give us a pill, a cream, or someone waving their hands over us once a week, and we perk right up – seems easy!

3. Self-diagnosis is encouraged. Whether it’s checking off the laundry list of vague symptoms, or buying a test kit you can do at home, do-it-yourself is the name of the game for quacks. And if you did get tests at the doctor’s office, they encourage re-interpretation. Doctor says your thyroid levels are fine? Well check your number against this web site’s “more accurate” scale. Doctor says your hormone levels are healthy? Take a saliva test to find out more!

4. Remedy is promoted by an actress of fading fame. E.g., Jenny McCarthy and Suzanne Somers.

5. Proponents laud how natural the remedy is, and decry the toxins in the environment and/or conventional medicines. Arsenic is as natural as it gets – it’s an element! Hemlock is a plant (make sure you get organically grown). Meanwhile insulin for diabetics is synthetic. Using “natural” as a synonym for “good” doesn’t make sense. (Also look for the keyword “allopathic” to describe conventional medicine.)

6. Relies on testimonials, anecdotal evidence, appeals to authority. Approaches that work don’t need this type of weak support, because they have strong scientific evidence – the kind that attempts to sweep away all the human foibles that can prevent us from seeing what’s really happening, and determine if an intervention has a real effect.

7. Provides citations as though they refer to peer-reviewed scientific journals, but the cited material is actually a book, presentation, or web site of an individual proponent of the remedy. It doesn’t matter how many letters are after your name – just because you say it doesn’t make it reliable. Publication in a respected journal indicates your claims have been examined and probed for mistakes and found robust. Publication on a website means you successfully Googled GoDaddy.

8. Users respond to skeptical inquiry and questioning of the evidence by saying, “I KNOW this works – it worked for me.” When the people trying to sell you on something have no clue about placebo effect, confirmation bias, coincidence, self-limiting conditions, and general methods for removing human perceptual bias, you can dismiss pretty much everything they say.

9. Praises or demonizes according to fad. Acai berries are magically delicious, but VDTs, power lines, electrical transformers, cell phones, Wifi is evil.

10. Invokes the Pentaverate. Promoters wave away criticism as the result of wide-reaching conspiracies involving doctors, pharmaceutical companies, the CDC, and other entities.

11. The remedy is said to have no possible side effects or risks. Generally if something can have an effect, it can have a side effect. If it can change your body in some way, that change might turn out badly for you. Even such benign and universally prescribed practices as exercise and high fiber diets have risks and side effects.

12. Oprah.

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