Those of you who are followers of HonestMedicine will remember about the terrible time my husband Tim had after his second brain tumor surgery (his first recurrence in 10 years) in 2001. You read about how:
• Tim’s suture line wouldn’t heal for 8 months, continually bursting open
• His wound became infected and leaked cranial fluid off and on for the entire 8 months
• His neurosurgeons performed 8-9 additional surgeries (all of which failed), in hopes of finally finding two pieces of skin that would hold together
• In desperation, his neurosurgeons took chunks of skin from other parts of Tim’s body and grafted them onto his head, in hopes that the grafts would “take,” and that his skin would finally heal. (This, too, failed.)
• Several times, his doctors put drains in his head to pull fluid from his brain
Our nightmare continued for ten months, between June 2001 and April 2002, with a 2 month break in between. Finally, thanks to a chance phone conversation with a physician friend, Dr. Carlos Reynes, I learned about Silverlon -- an FDA-approved, 100% non-toxic, relatively inexpensive, anti-microbial wound dressing that was routinely being used by doctors to treat non-healing diabetic wounds and burns. Thanks to Dr. Reynes, Tim became the first person to have Silverlon used on a non-healing post-surgical head wound. We were extremely lucky that Tim’s neurosurgeon -- afraid that yet another surgery, which had already been scheduled, would kill Tim -- allowed the Silverlon to be put on his head.
You’ll also remember that, from the moment the Silverlon was put on Tim’s head, he began to heal. A week later, he was able to come home. He lived for another 3-1/2 years, and his incision never opened up again.
When my article about our experience with Silverlon was published by the National Brain Tumor Foundation in their Winter, 2003, newsletter, “SEARCH,” as their cover story, it created quiet a stir.
I was very careful to keep my recounting of our story upbeat, in hopes that doctors who read it would be eager to learn about Silverlon, and possibly use it on some of their non-healing patients. (This kind of non-healing suture line -- especially in cases where the patient’s skin has been previously radiated -- is more common than neurosurgeons like to admit.)
But, I also knew that if I were to tell “the rest of our story” in this article, it would never be published. I therefore purposely neglected to write about how:
• All the extra surgeries had left Tim extremely brain injured, so that when he came home, he was paralyzed, bed-bound, incontinent, and had major memory loss.
And I also decided not to tell about:
• How not one of Tim’s doctors was even remotely interested in learning about the treatment that had saved Tim, and kept him from dying.
And there was more that I left out of the article, including that the residents, who had liked me very much before this incident, began acting very differently toward me: suspicious, even cold. One resident, my favorite, stopped me in the hall. “I’ve been thinking,” he said. “I just don’t believe it was the treatment that you found that healed Tim’s head.” I asked what he thought had done the trick. “Vancomycin,” he said, naming the high-powered IV antibiotic that Tim had already been on for over 6 weeks – along with several other very expensive IV antibiotics. I mentioned this fact to him. His answer – I will never forget it: “Vanco is like that. It kicks in.”
Try as I might, I could not interest one of these residents, or the attending neurosurgeon, in reading any of the materials I had brought to the hospital about Silverlon. (I even tried to share with them the FDA reports that declared that Silverlon was safe for use on ANY non-healing wound. They couldn't have been less interested. Not one doctor, or resident, read even one of the articles. A few actually told me that their “plates were full.”)
Although the doctors at the hospital where Tim’s skin had healed hadn’t seemed interested or curious about our success with Silverlon, I naively hoped that some, more curious, doctors outside of Chicago might be.
The day “SEARCH” began reaching people’s homes, distraught family members started calling me from hospital waiting rooms across the country. “My brother’s head is leaking.” “My sister’s head won’t heal.” Etc., Etc., Etc. Others sent me emails from foreign countries – all describing the same problem.
I convinced the inventor of Silverlon, Bart Flick, MD, who by now had become our friend, to talk with these patients’ family members, to offer to speak with their doctors, and to provide Silverlon free of charge for the patients. He agreed, and in at least one case that I know of, he sent the Silverlon by overnight mail.
Imagine my surprise when not one of these patients’ neurosurgeons wanted to speak with Dr. Flick. And not one agreed to let their leaking, dying patients use this product in lieu of, or even in addition to, surgery.
For 3-1/2 years after Tim came home, I dedicated myself to taking care of him, and to obtaining coverage for the caregiver services we desperately needed, so that Tim could be taken care of at home while I worked. I also kept my home-based public relations business going so that I could afford to keep Tim at home. Even though he was very disabled, he was still Tim, and we were able to have some wonderful times.
During the year after Tim died (November 8, 2005), our difficulties in dealing with the healthcare system kept gnawing at me. I decided to create this website in Tim’s memory, and in his honor, as my way of educating others about the flaws in our medical system. I also wanted to inform people about other promising (and often lifesaving) treatments, like Silverlon, which I knew that their doctors probably wouldn't tell them about.
But “the rest of the story,” about our Silverlon experience, also kept gnawing at me, too. I kept asking myself:
• Why weren’t our doctors – and the other doctors who read about our success with Silverlon – even interested in reading about it, much less willing to consider trying it? (Remember, it was FDA-approved for all non-healing wounds.)
OTHER "ANECDOTAL" TREATMENTS
And I also wondered:
• Were there other, similar, lifesaving treatments -– like Silverlon –- that doctors also weren’t telling their patients about? Treatments that were quietly saving lives (once patients themselves searched for, and discovered, them on their own), but were being under-publicized, or not publicized at all?
And, finally, I wondered:
• Why aren’t these treatments better known? In other words, what is it about our medical system -- and our doctors, in particular -- that makes them so resistant to learning about (not to mention, trying) anything that is different, no matter how promising. (Secretly, I often wondered, and still do, whether these doctors have forgotten their Hippocratic Oath, and if so, how this has happened.)
Finding other, similarly life-saving treatments, turned out to be far easier than I had thought it would be. I didn’t have to look very far.
The treatments I found all have similar, very compelling, characteristics:
1) They have been around for many years, ranging from “only” 30 to over 90 years, and have benefited hundreds, sometimes thousands, of patients.
2) These treatments have all benefited extremely sick patients, with life-threatening illnesses ranging from epilepsy, multiple sclerosis, and even HIV and cancer. The results have been clear (i.e., seizures stopped, MS patients being able to walk, etc.).
3) The treatments all have medical practitioners -- and in most cases, MDs -- who prescribe the medications, and openly champion them.
4) In most cases, the patients who have benefited from these treatments are extremely passionate about helping others to learn about them. The patients often devote a great deal of their time to doing this, holding fundraisers and educating the public.
5) And finally, some are natural treatments -- such as diets or supplements; others are off-label uses of generic drugs. But they all have one thing in common: 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.
The good news is that, for many reasons, I think that the time is finally exactly right for fixing this problem.
One of the main reasons the “time is exactly right” is that, for the last several years -- and even more so, recently -- Big Pharma’s duplicity has been making headlines. There have been media exposes about pharmaceutical companies:
• “Rigging” the so-called studies, which they themselves fund
• Hiding the results of the studies that actually prove their products don’t work, while – at the same time
• Heavily publicizing the studies that demonstrate their products’ successes
• Hiring the researchers to conduct the studies, making it very clear to them exactly what kinds of results they are expecting the studies to show
• Hiring writers to write the articles that appear in the medical journals the doctors read, and also hiring big name doctors to affix their names to these studies, while doing very little, if any, of the writing.
In fact, recently (in April, 2008), the Journal of the American Medical Association (JAMA) itself published three articles exposing the fact that Merck Pharmaceuticals had engaged in duplicitous behavior in marketing Vioxx, prior to 2004, when it was pulled from the market. Merck, as revealed by JAMA, had engaged in every one of the Big Pharma practices mentioned directly above.
Because of the media attention given to Big Pharma’s behavior, and also because of many excellent, best selling books -- such as Overdosed America (John Abramson, MD), The Truth About the Drug Companies (Marcia Angell, MD), Over Dose: The Case Against the Drug Companies (Jay Cohen, MD), and the recently published Our Daily Meds (Melody Petersen) -– I think our country is finally ready to be open to these treatments, even though they may not have multi-million dollar, Big Pharma-funded studies behind them. I think the public finally understands that such Big Pharma “studies” do not necessarily result in safe, effective treatments.
In this posting, I’ll introduce you to three very exciting treatments –- all similar to Silverlon, in that they have been saving lives for years. (One of these treatments has been in use since the 1920s, and has been championed by a major medical institution since the 1940s; the other two have been used successfully by many patients since the 1980s.) In future postings, I’ll discuss some of the reasons doctors don’t tell their patients about these treatments – even though, in one instance, the treatment has been well known by treating physicians since the 1940s. And, in the coming weeks and months, I’ll also interview several of the people involved with these treatments. I am confident that you will find their stories – and these treatments – fascinating.
Treatment #1, Intravenous Alpha Lipoic Acid
I first heard Dr. Burt Berkson speak at a meeting of NOHA (Nutrition for Optimal Health Association in September, 1999. His talk was a paradigm-shifting event for me.
I will never forget the true story Dr. Berkson told about how, as an internal medicine resident, he used an intravenous antioxidant therapy, alpha lipoic acid, to treat a couple who came into the hospital, suffering from acute liver failure as a result of eating poisonous mushrooms. Dr. Berkson was told that nothing could be done to save these people’s lives, except for an immediate liver transplant, and that a donor was not available. He therefore was ordered to “administer medical support” and to just observe the patients as they “went though the phases of death. I was told to take notes and prepare a report for grand rounds at the hospital.”
Not wanting to just let his patients die, he remembered reading an article about alpha lipoic acid, an antioxidant with promising potential, that was being studied at the National Institutes of Health. He contacted one of the NIH researchers and was able to get some ALA. Thanks to Dr. Berkson’s quick thinking and ingenuity, his patients survived. They are still alive today, 30 years later.
Then Dr. Berkson told (both in his lecture and his book) about how the hospital’s chief doctor, rather than showing joy and curiosity about the wonderful substance that had saved these patients’ lives, told Dr. Berkson that the patients “would have come around anyway, even without the ALA therapy” and assured him that “although these types of recoveries were rare, they sometimes occurred.”
Again, like my experience with Silverlon, a total lack of curiosity. Even a similar hostility, as you will soon see.
In his book, The Alpha Lipoic Acid Breakthrough, Dr. Berkson relates how, the next weekend, another couple was admitted to the hospital with the same diagnosis. (Mushroom season, Dr. Berkson points out, was “in full bloom.”)
Dr. Berkson writes: "Once again, hospital authorities told me that these people had no chance of living – not with their laboratory results. The patients were assigned to my service, and I was ordered not to use ALA – the pharmacists had never heard of the drug before and it was not on the hospital list. The chief doctor added that because alpha lipoic acid was not on the hospital’s approved drug list and was not recognized by any organization that he was aware of, I could not use it again. . . . I was told either to stand back and watch the patients die or face reprimand."
Of course, Dr. Berkson was very troubled by his superiors’ attitude. He writes: “But I was a doctor charged with saving lives, and I couldn't do that. . . . I could not just sit helplessly and watch them die.” So he used the ALA left over from two weeks earlier – against the wishes of hospital authorities. These patients, too, recovered.
What Dr. Berkson writes next sheds, for me, a very sad light on our medical system: “Not surprisingly, the hospital administration was furious with me and branded me as a doctor who could not follow orders, a person who was not a good team player.”
Soon after this, Dr. Berkson, whom I will be interviewing for HonestMedicine, left the practice of hospital-based medicine. He is now happily in private practice, saving lives in Las Cruces, New Mexico. Over the years, he has saved many patients from needing liver transplants – which he suspects may be one reason the medical establishment is not enthusiastic about his use of alpha lipoic acid. Transplants, he pointed out to me in a recent phone conversation, are a huge business in many US hospitals.
Treatment #2 – Low Dose Naltrexone (LDN)
Another promising treatment, Low Dose Naltrexone (LDN), is a very-small-dose, off-label use of a medication that was approved by the FDA in 1984 for treating drug and alcohol addiction. Shortly after its approval by the FDA, Bernard Bihari, MD discovered that, in small doses (1/10 to 1/20 the dose prescribed for addicts), LDN has immune-system-modulating, and endorphin-raising capabilities. He began prescribing it for patients with HIV/AIDS, and then for people with several autoimmune diseases, including multiple sclerosis, lupus, and rheumatoid arthritis. In subsequent years, Dr. Bihari also had considerable success using LDN for patients with cancers that had failed to respond to standard treatments. In many cases, the results have been stunning. Since the 1980s, several thousand patients have taken LDN; more are finding out about it on the Internet every day.
However, while many medical doctors have personally observed extremely positive results in their seriously ill patients taking LDN, and while some of these doctors are now conducting serious trials of LDN, the majority still opt to prescribe the more toxic, side-effects-laden drugs -– most of which don’t even work well. And they refuse to prescribe LDN.
I will be interviewing several advocates of LDN, including multiple sclerosis “success story” SammyJo Wilkinson, who has been raising public awareness and money for LDN clinical trials. (Her group raised several thousand dollars, with which they were able to fund a small trial at the University of California at San Francisco, UCSF.) SammyJo’s website is http://www.ldners.org/. Other LDN patient advocates have websites, too, as does David Gluck, MD, a very devoted physician advocate of the drug, who will help to coordinate his 4th Annual LDN Conference this year.
All of these efforts are labors of love.
Other LDN studies are being performed, too. Last year, a paper describing the results of one study, performed at Penn State, and titled “Low-Dose Naltrexone Therapy Improves Active Crohn’s Disease,” was published in the American Journal of Gastroenterology. And two successful studies on LDN treatment for multiple sclerosis were presented at the Annual Meeting of the American Academy of Neurology this April -- one from UCSF and one from Milan. And Dr. Jaqueline McCandless has put $250,000 of her own money, and much of her own time, into conducting a clinical trial in Africa on LDN’s efficacy for AIDS patients.
In addition, SammyJo Wilkinson has coauthored a book (with medical writer, Elaine Moore), The Promise of Naltrexone, to be published by McFarland in September, 2008.
Treatment #3 – The Ketogenic Diet
Finally, I will tell the very dramatic story of Hollywood film writer/director/ producer Jim Abrahams (Airplane, the Naked Gun series, and Hot Shots), his son Charlie, and the Ketogenic Diet, which finally cured Charlie of his almost-non-stop epileptic seizures – but only after he had been prescribed so many expensive, highly toxic drugs that he was literally bumping into walls. Charlie was even subjected to a completely ineffective brain surgery before Jim (through his own research) discovered the Ketogenic Diet at Johns Hopkins. Since the time when Jim found the Ketogenic Diet for Charlie in the 1990s, Charlie had been seizure-free, and Jim has devoted his life to raising awareness for the diet. He has set up the Charlie Foundation, to educate both physicians and parents of children with epilepsy. In 1997, Jim produced a made-for-television movie, “First, Do No Harm,” which starred his friend Meryl Streep, as the mother of a child whose son, like Charlie, was helped dramatically by the diet. (There are clips from the movie, as well as a short video, "Meryl Streep Introduces the Ketogenic Diet," on Jim's website.)
I’ll tell Jim and Charlie’s story in detail in upcoming postings, and I’ll interview Jim for HonestMedicine. But, in closing, I can’t resist including the reason one of Charlie’s doctors gave to NBC’s “Dateline,” for not telling Jim and his wife Nancy about the Ketogenic Diet, and for even discouraging them from trying it, after Jim had found it (even though, like most other pediatric neurologists, he knew about the diet). When asked why he had dissuaded the Abrahams from attempting the diet, he said: “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.” I could not believe what I was hearing. I urge you to watch this video for yourself. You won’t believe it, either.
When Radiation Was an Anecdotal Treatment for Cancer -- 1928
I’ll end this posting with the true story of my Grandma Julia, who was told in 1928 by Dr. Charles Mayo (when my Mom was 11 years old) that she had colon cancer, and had only 6 months to live. Instead, she went to Germany, where she had radiation treatments, and lived another 10 years! Radiation treatments, of course, would have been called “anecdotal” in America back then. (My posting about Grandma Julia is online.)