How Calling Lifesaving Medical Treatments “Anecdotal” Keeps Doctors From Being Curious

In my previous posting, “Four Lifesaving Medical Treatments: Not So ‘Anecdotal,’ After All,” I described four treatments that doctors routinely call “anecdotal,” but that, in my opinion, don’t deserve this negative label.

Their common elements are impressive:

1) They have all been in existence for many years.

2) All have benefited hundreds, sometimes thousands, of very sick patients with life-threatening illnesses.

3) All have medical practitioners and patient advocates who openly champion them.

4) No one is making large amounts of money from these treatments -- especially when compared to the money that is made from the treatments championed by Big Pharma.

5) Because they lack clinical trials to prove their efficacy, doctors call them “anecdotal,” and therefore often opt to prescribe more toxic pharmaceuticals in their stead.

For a more complete description of these common elements:

I want to stress here that I am not against the word “anecdotal,” when it is used properly to describe experiences and treatments that are genuinely questionable or suspect. An example of a truly anecdotal treatment: “If I rub olive oil into a wound and it doesn’t get infected, why not do it every time I get a wound – just in case that’s what provided the protection.”

Now that’s an “anecdotal” treatment!

Unfortunately, however, the word is also used by physicians and medical journals to describe potentially lifesaving treatments, such as those I described in my previous posting which, for the reasons I stated above, often lack the clinical trials and Big Pharma backing they respect. I believe that this is unfair and, frankly, insulting. After all, the word "anecdotal" suggests that whatever it is should not be taken seriously. (For instance, if I tell you that I’m going to share an “anecdote” with you, I guarantee that you’re not going to expect a serious story!)

It’s the same with calling a lifesaving treatment “anecdotal.”

So, while I can understand using the word to describe questionable one- or two-time treatment successes, we really must find another -- more appropriate -- word to describe the effective treatments I wrote about in my previous posting:

♣ SILVERLON – This product finally healed my husband Tim’s suture line after eight months of infections and cranial fluid leakage, which a total of eight “reparative” surgeries couldn't stem. (You may also read my original article, published by the National Brain Tumor Foundation, here.)

♣ LOW DOSE NALTREXONE – This treatment has been used by thousands of patients, with excellent results, for Multiple Sclerosis and many other illnesses.

♣ THE KETOGENIC DIET- This high fat diet has been used successfully at Johns Hopkins for decades -- and is now used by medical institutions throughout the world, to treat intractable seizures in children for whom anticonvulsant medications have proved ineffective.

♣ ALPHA LIPOIC ACID – This nutritional supplement is used intravenously in some other parts of the world to regenerate organs, including the liver.

There are many other treatments like these that are unfairly called “anecdotal.” I plan to feature others in upcoming postings. (I welcome your suggestions, as well.)

Another Example: On her About.com site, thyroid expert Mary Shomon wrote that many doctors dismiss the use of T3 or natural desiccated thyroid medication (medications that help numerous thyroid patients) as “snake oil,” or claim “that patients who respond positively to these medications are doing so because of the ‘placebo effect.’” I urge you to read Mary’s very interesting posting in its entirety.

But, I think the worst thing about using the word “anecdotal” to describe patients’ positive experiences with treatments like these, is that it discourages any level curiosity on the part of physicians. As long as they can dismiss these non-pharmaceutical treatments as “anecdotal” -- without even agreeing to research them for themselves -- they can remain “uncurious.”

This is very troubling -- even dangerous -- for us as patients.

Why troubling? Because, as patients, we want our doctors to care enough about us to be happy and curious when, even if it's through our own research, we find a treatment that works, when their treatments have failed.

And we hope that, at least in cases like those I described in my previous article, our doctors will be interested enough to read the information we patients share with them. We even hope they'll want to go online themselves, so they can discuss these treatments with us.

But, as you will remember, most of the doctors I wrote about weren’t the least bit curious about the lifesaving treatments that helped their patients:

♣ My husband Tim’s doctors actually witnessed his skin healing immediately after Silverson, the FDA-approved product I introduced them to, was placed on his head. Even after witnessing firsthand Tim’s infections and cranial fluid leakage for eight months, his doctors weren’t the least bit curious about the treatment that finally worked. And when I offered to set up conference calls for them with Dr. Bart Flick, the president of the company that developed Silverlon, they refused; they said they didn’t even have time to read the literature I provided for them (their “plates were full”) –- which included proof that Silverlon was FDA-approved.

♣ And, Charlie Abrahams’ pediatric neurologist actually discouraged his parents from taking the little boy to Johns Hopkins to be put on the Ketogenic Diet -- even though he knew it had cured many children, like Charlie, of their non-stop seizures. Recently, Jim Abrahams, Charlie’s father, related (in an interview with “Epilepsy Mom,” Arlene Martell) how, when he first told Charlie’s doctor that he was considering taking his son to either an herbalist in Texas, or to Johns Hopkins for the Ketogenic Diet, this doctor said: “Flip a coin. Neither one will work.” (The Ketogenic Diet did, of course, work for Charlie, who is still both seizure-free and medication-free fourteen years later.) This doctor admitted to "Dateline NBC" that he had dissuaded the Abrahams from trying the Ketogenic Diet “because I don’t think we had exhausted all the medical approaches yet. There were actually still other medications that we hadn’t tried yet.”

♣ Many patients whose multiple sclerosis symptoms were greatly eased (and sometimes even halted) with Low Dose Naltrexone, had similar experiences with their doctors. Read about patient advocate and MS patient SammyJo Wilkinson’s experiences, as well as Joseph Wouk’s. (Joe, who is novelist Herman Wouk's son, has written a book about his experiences with MS, and the relief he has experienced with LDN. The book is online in its entirety at the link to his site.)

 

And you can also read the 146-page book, published online by Case Health, in Australia, and titled Those Who Suffer Much Know Much, which contains 29 LDN patient experiences. It will come as no surprise that many of these patients had trouble convincing their doctors to prescribe LDN -- even after these doctors personally witnessed the impressive improvements their patients had experienced with the drug. (Many patients had traveled to New York to have LDN prescribed by Dr. Bernard Bihari, LDN pioneer, and had already experienced great relief.) In many of these cases, their doctors back home said the improvement was probably due to the “placebo effect”! Unfortunately, this kind of response is not at all unusual.

I’m afraid that a lot will have to change in our medical system before more of our doctors become curious enough to consider treatments like these, that patients discover on their own.

And, because these are not pharmaceutical treatments (or in the case of LDN, an off-label, low dose pharmaceutical treatment), it is doubtful that medical journals will be carrying positive reports about these treatments anytime soon.

So, why do I say this is dangerous? Because, in every one of the cases I wrote about in my previous posting, there really are no available pharmaceutical or surgical treatments that work as well, while being almost completely non-toxic.

It's a shame more patients don't know about them.

Comments

[Chris Johnson]

I've been a pediatrician for 30 years and am surprised to read your comments about the ketogenic diet being controversial. It's true that it has been used less in the past 15 years or so with all the new seizure medications now available, but it's always been in the tool kit of every pediatric neurologist I've known as a treatment for refractory seizures. I've seen its effectiveness in more than a few children.

[Gregory D. Pawelski]

A University of Florida research study found talc has the ability to stunt cancer growth by cutting the flow of blood to metastatic lung tumors. Talc does this by stimulating healthy cells to produce 10-fold higher levels of endostatin (hormone released by healthy lung cells).

However, previous studies had been disappointing with pharma-based endostatin because most clinicians had injected the hormone directly into patients, where the hormone broke down in the body before it had a chance to slow the spread of cancer. UF researchers rethought the situation by understanding that by allowing talc in the chest cavity, thus constantly causing normal cells to produce endostatin, it inhibits the growth of tumors.

And it's interesting that subsequent studies had failed to show a benefit of vitamin C, but those studies involved giving vitamin C orally. A recent study involved injections of vitamin C to enable greater concentrations of it to get into the system. The key finding was that ascorbic acid used as a drug appears to have some promise in treating some cancers. Vitamin C may be useful to treat cancer after all.

Again, another one of those "whiz bang" sciences that often gets a pass without much thought. Few scientific discoveries work the way we think and few scientists take the time to think through what it is they discovered. I'm glad, though, some do take the time.

There are limitations involved with randomized clinical trials. Perhaps the greatest limitation is that it is predictive of population trends, and is not definitive. Clinical trials provide few black and white answers. The problem with the empirical approach is it yields information about how large populations are likely to respond to a treatment. Doctors don't treat populations, they treat individual patients.

Because of this, doctors give treatments knowing full well that only a certain percentage of patients will receive a benefit from any given medicine. They subject patients to one combination chemotherapy after another, just going from one journal paper to another journal paper. They need information about the characteristics that predict which patients are more likely to respond well. The empirical approach doesn't tell doctors how to personalize their care to individual patients.

Fortunately, receptive people are not so threatened by ideas which dare to challenge and question one-size-fits-all, widgets-on-an-assembly-line medicine. It's certainly not more comforting to see patient after patient succumb, not to the cancer, but to an early demise thanks to wrong-therapy/wrong-dose cookie-cutter treatment.

No one is publishing "real world" studies except private laboratories performing cell culture-based tests, which can only do "real world" studies, because their studies require fresh, viable tissue, which must be accessioned and tested in "real time" under "real world" conditions.

And most importantly, big pharmaceutical clinical trials are enormously remunerative to the participating clinical trials groups, where they are much simpler to carry out.

[jeff]

Lobelia capsules are best sellers in areas where the doctors let the parents know about it. Lobelia sell better than anything else, repeatedly, because it naturally and totally safely reduces or eliminates seizures of epilepsy and many other causes. See Jethro Kloss book "Back to Eden" for uses over 100 years old.
Never toxic, Never expensive, very effective.
Not patentable(thus not approved).