While the advent of legal Medical Cannabis in many states has made the task of successful self-diagnosis and treatment far less difficult for many people suffering from a wide range of conditions and diseases, and has also made collaborative diagnosis and treatment far easier for people who are fortunate enough to find a thoughtful and insightful physician to work with, there are still many states where people don’t have the Medical Cannabis option, and even in those states where that option is available there are still many people with conditions and diseases for which Medical Cannabis is not the answer, or is not the whole answer. In every state, with or without legal Medical Cannabis, people are still faced with the challenge of finding a doctor who they can work with, and then figuring out how to accomplish that often difficult task.
Doctors wear white coats for the same reason that judges wear black robes, cops wear Darth Vader gear, the Pope wears funny hats, kings and queens wear crowns, corporate zombies wear suits, and soldiers display nasty weapons and paint their faces black – they all want you to see that they have authority, and you don’t. This means, among other things, that you are supposed to do what they say, and not ask questions – or else.
It is an extremely rare doctor who welcomes questions from their patients, unless those questions are asking for their advice – certainly questions that challenge their advice are not welcome. However in my experience that is exactly what you have to do every step of the way if you are going to actually be healed of whatever disease or ailment you are suffering from because if you don’t the odds of a successful outcome drop dramatically.
Doctors are busy people and for the most part stopped keeping up with research in their field the moment they left medical school, with the exception of what they gather attending seminars at medical conventions and from the pharmaceutical industry reps who bring them “the latest research” which incidentally involves giving their patients the latest drug their company is pushing. They certainly don’t have time to study research that is outside their field – a gastroenterologist generally has no idea what the latest research in endocrinology shows, and vice versa. If you go to a cardiologist to complain about pains in your chest, sure enough you’ll get that heart of yours tested, but the heart doc will probably never consider the possibility that diaphragm spasms caused by SIBO (small intestinal bacterial overgrowth) is pulling on your heart, or that you have a massive ulcer caused by helicobacter pylori infection in your stomach that is creating referred pain to your heart.
Likewise if you go to a gastroenterologist complaining of certain kinds of gut problems you’ll no doubt be tested for Celiac disease and Crohns, but there’s almost no chance that the gastro guy will order a panel of thyroid tests to see if you have Hashimoto’s Thyroiditis caused by an immune response to certain proteins in your diet which cause a parallel auto-immune attack on your thyroid. Wheat gluten protein and certain tissues in the thyroid have virtually identical molecular structures, so if you have the genetic predisposition to gluten intolerance, or if your gut microbiome is compromised by something like long-term exposure to RoundUp in your food, your immune system considers both gluten and your Thyroid to be the same foreign protein and attacks both.
Even if you have been tested for Gluten intolerance by the usual blood test, and your test shows no problems with gluten, that’s no guarantee that your immune system will agree with the test results. Equally unfortunately your thyroid can be under immune system attack and you can have perfectly normal TSH and T4 test results – Hashimoto’s only shows up when you are tested for thyroid antibodies (anti-TPO and TgAb), which most docs simply won’t do without a lot of arm-twisting, for some reason known only to them. The Thyroid antibody tests are certainly cheap enough (around $60 most places) even if you are self-pay, and they are definitive. If you have a lot of gut symptoms that don’t yield to conventional diagnosis this might be a possibility for you to explore. If you test positive for anti-TPO and TgAb you have Hashimoto’s Thyroiditis and while it can’t be cured it can be managed and the destruction of your Thyroid can be slowed or stopped.
The point is that while doctors are often very good at diagnosing and treating the 80% or so of patients whose problems in fact do lie within the boundaries of their specialty, almost none of them will ever consider stepping outside that specialized area of knowledge to look for linkages. Now, supposedly, that’s where the generalists like GPs and Internal Medicine docs come in – they are supposed to have an overview that gives them a more holistic perspective on you and your health issues. However these docs suffer from the same lack of time (and personal initiative) to stay on top of all relevant research in all fields so that they can in fact do their job of finding linkages between sets of symptoms that fall under different medical specialties and then send you to the appropriate practitioners in those specialties.
Most doctors would like for you to get better, and they would like to get credit for it, but even more they want to get paid whether they help you or not, and if they try everything they know how to do and you still don’t get better then a subtle shift takes place and they begin sending you semi-concealed but obvious “go away” messages. Doctors know that 80% or more of the people who walk through their doors can be easily diagnosed and treated to everyone’s satisfaction, and unless they are exceptionally dedicated physicians they are perfectly satisfied to be seen as heroes by 80% of their patients, and would rather that the remainder, who can’t be diagnosed or treated without a great deal of effort, would just disappear. That’s when you are told “there’s nothing more we can do for you”. Far too many doctors like to think of themselves as people with a magic kiss that can make the boo-boo go away, and when their magic doesn’t work, it somehow becomes your fault. That’s just human nature at work – but you wind up on the short end of that particular stick.
This is where you come in. Only you have a really pressing reason to spend the time and energy needed to thoroughly research your health issues – you want to get better! However, before you even start doing your own research there are a couple of things that you must do. The first is to find a GP or Internal Medicine doctor who is a good listener and who doesn’t think they know everything. Next you have to understand what kind of information this doctor (any doctor really) will give credibility to, and why. Finally you have to be able to research within the framework of that kind of information and, as you begin to discover what may be wrong with you, you have to know how to approach the doctor with that information. Finally, although you can certainly mine the internet chat rooms and health-related websites for information, you must follow the old CIA adage “Trust, but verify.”
Let’s take this one step at a time. If you don’t already know a doc who listens and doesn’t think they already know all there is to know, you are going to have to network with your friends and family until you find someone who knows such a doctor, and then you have to get into their practice. Fortunately there are plenty – well, quite a few anyway – of good docs out there. You just have to sort them out until you find the one who is right for you.
Then you have to get on the internet and find out everything you can about your symptoms. We all know that the internet is full of as much bad information as good, and it’s a matter of using your judgment. In general I would say that web sites that are pushing a product or a program for money are not good sources of information. Discussion groups and moderated forums tend to be much more productive. Finding people who are dealing with the same set of issues and symptoms as you are can be quite helpful. They can help you connect your symptoms with a set of possible diagnoses – but this isn’t information you want to print out and take to your doctor. This is just the first of two key steps – identifying what might be the cause or causes of your problems, with or without the help of other people.
The next and most critical step is to understand that doctors only accept one kind of medical/scientific information – the kind that comes from peer-reviewed articles in recognized medical journals. This is actually a good thing because it sets a high standard for the authenticity of the information. And here’s where things get really cool!
The National Institutes of Health, an agency of the US government, publishes an online database containing abstracts of over 23 million peer-reviewed articles (as of 2015) from recognized medical journals around the world – not just from the US. There are articles from peer-reviewed medical journals from dozens of countries with advanced medical research facilities. The database goes back as far as the 1960s and comes all the way forward to abstracts of articles that haven’t yet been published. Even better, the articles all cite the names of the researchers who did the work and are publishing it, and there are almost always direct email links to the researchers. I’ve found that many of these researchers will respond to requests for information – for example, links to other research they have published, or links to other relevant research by their peers. Just don’t overwhelm them with complicated requests, long narratives of what is wrong with you, or tearful pleas for help. Just let them know that you found the abstract of their work on PubMed useful and relevant to your health issues and that you would appreciate any additional information they care to share with you.
So once you’ve done your background research in forums and discussion groups online, you then move to the NIH database and begin using your symptoms, as well as any diagnosis that you think might apply, as key words to troll for medical journal articles where your symptoms are discussed. This can be time-consuming, and you have to be able to understand some pretty high-level scientific/medical language to make sense of what is bring written, but don’t let that discourage you, because these abstracts are almost always written with good clear language, if not exactly layman’s language, and with a little effort you’ll be able to penetrate the language.
It also helps (a lot) if you understand elementary statistics, because most of these abstracts discuss their findings using statistical language in the body of the abstract. But even if you don’t understand statistics very well, or at all, don’t despair, because there is always a short paragraph at the end of the abstract called ‘Results’ or ‘Conclusions’ or ‘Findings’ in which everything is summarized in reasonably plain language.
I won’t keep you waiting any longer – you can link to PubMed here
Once you log on you’ll see a simple search box at the top of the page where you can enter your search terms and go. On the home page you also see a lot of other specialized search options, but stick with the simple search box at the top at first. Once you get into the database you’ll see that the articles are generally arranged with the most recent on top. When you click on an article that looks relevant, you’ll get the abstract of that article but you’ll also get a box on the right hand side of the screen that suggests related articles you may want to investigate. As you proceed with your research, keep a Word document open on your desktop and just drag to select the abstract and its author data, then copy and paste this into your Word doc, which becomes your file of possibly relevant information.
My suggestion would be to spend a little more time once you’ve collected your abstracts and go through them putting the most relevant at the top of the document, saving your doctor the time and trouble of sorting through the information themselves. You are a lot more likely to get even a good, attentive doc’s attention if you hand them a single sheet with a couple of really juicy abstracts rather than a folder full of stuff for them to read. (And don’t forget, the contact email addresses for the researchers are almost always at the top of the abstract, so if you make sure that the links are “live” in the word document you give to your doctor, he or she can be in touch with the authors if they want more detailed information.) Once they have read what you give them, and you get their opinion on whether or not this might be relevant to what you’re dealing with, then is the time to hand them all the relevant info you’ve uncovered and say “Oh by the way, here are some more articles I thought were relevant – I just didn’t want to overwhelm you with all this before we had a chance to look at the ones I thought were most interesting.”
Let me end this foray into how to research your own health issues and find a doctor who is willing to consider information that lies outside their own field of knowledge with a short story on how I came to understand this process.
My wife was diagnosed several years back with a condition called ‘Barrett’s Esophagus’. There was a pre-cancerous lesion in her esophagus where it joins the stomach. It’s presence was confirmed by tissue pathology as well as a visual endoscopy. Barrett’s is almost always caused by reflux, which in my wife’s case was the result of SIBO (small intestine bacterial overgrowth) which in turn had been caused by being given an overdose of the wrong kind of a powerful antibiotic (Vancomycin) for an operation, which destroyed the ‘good bacteria’ in her upper GI tract allowing pathogenic bacteria to move upward from her colon where they are normally kept in check by the good bugs in the upper reaches of the gut. The good news, the gastroenterologist told us, is that the lesion was in its very early stages. The bad news, he told us, is that Barrett’s invariably progresses into full-blown esophageal cancer and at some point we were going to have to take extreme measures including surgery and radiation.
Aren’t there any treatments for Barrett’s in this early stage, we asked. No, he solemnly intoned, we have no research that gives us any treatment modalities. (They just love to use words like ‘modalities’.)
Now, I have since that time learned that when a doctor uses the word “We” he means the entire medical profession, and that is supposed to end the discussion right there, because if the entire profession doesn’t have a cure, then none exists – right? “We” is his cover story. So this doctor told us to go home and enjoy the life we had left together, and gave us maybe 5 years before things got really bad.
Neither my wife nor I take that kind of bullshit for an answer, but we had long ago grown tired of confronting pompous idiots in white coats, so we paid the guy’s bill and left.
Having been through this before the first thing we did was to log on to PubMed and start looking. At first we kept running into dead ends, but one thing about research is that you simply have to keep trying – shuffle your key words around, re-phrase, come up with new key words, etc. And here’s where PubMed really shines – it includes worldwide data – not just US studies. After you spend some time on PubMed you’ll see that there is a tremendous amount of research going on in Europe and Asia that the medical establishment in the US never hears about and, in many cases, actively rejects or ignores. This turned out to be the case with what ultimately led to a complete cure for my wife’s Barrett’s.
To keep this story short, we finally found a research paper presented in France by a US gastroenterologist, Dr. Stephen Stowe of North Carolina, whose research was not accepted (to say the least) by his peers in the US but which had attracted the attention of the European medical community. What we found was his address to a convention of internal medicine specialists from all over Europe in Marseilles, where his findings were hailed as a true breakthrough in the treatment and cure of Barrett’s. His treatment method was simple and non-invasive, and it used very inexpensive medications, and it worked – a huge percentage of his female Barrett’s patients had experienced complete remission within three years of beginning treatment, and most had been successful within one year. In retrospect it’s easy to see why his work was rejected by the US gastroenterology establishment – it was simple, inexpensive, and worked without any of their fancy technology and high-priced drugs. Can’t have that, now can we? That’s no way to pay for the wife’s Mercedes and a second home in Aspen, is it?
We tracked this doctor down (he had retired but a nurse in his former clinic put us in touch with him) and he agreed to call our doctor ( a naturopath, not the gastro guy) and discuss his treatment with her. They spent an hour on the phone and our doc came back to us and said that his research was impeccable and that we should begin immediately. We did, and it worked. A year later in a follow-up endoscopy (not the same gastro guy, needless to say) the lab results of tissue analysis showed NO TRACE of pathological changes. Her esophagus was healed. End of story. And five years later, another follow-up endoscopy has shown the same thing.
Here is an article that describe Dr. Stowe’s work in some detail. (After his acceptance in Europe the American College of Gastroenterology was forced to recognize him. However, note how they pooh-pooh his findings at the end of the article.)
A medical approach consisting of 3 agents (“triple therapy”) can reverse Barrett’s esophagus and the dysplasia that often follows, eliminating the risk for esophageal adenocarcinoma, according to investigators who presented their findings here at the 71st annual meeting of the American College of Gastroenterology (ACG).
The treatment consists of a proton pump inhibitor to treat acid reflux, sucralfate suspension to treat bile and pepsin reflux, and folic acid as chemoprevention against dysplasia.
“Medical therapy with these 3 modalities reverses dysplasia and Barrett’s esophagus in clinical and endoscopic follow-up,” said principal investigator Stephen P. Stowe, MD. Dr. Stowe is medical director of the Lake Norman Center for Digestive and Liver Disease in Mooresville, North Carolina. “We saw no difference in dysplasia clearance in men and women or in those with and without a family history of Barrett’s esophagus. We saw no progression to cancer in 301 patient-years of follow-up.”
Dr. Stowe and his coinvestigator conducted the phase 2 study in 81 patients with Barrett’s esophagus who were selected from 3495 consecutive patients in a single practice who were scheduled to undergo esophageal endoscopy. Of these 81 patients, 44 were men and 37 were women. The investigators categorized patients by the presence of dysplasia and stratified their treatment accordingly. Those with no dysplasia received daily treatment with a proton pump inhibitor of choice, 1 mg daily of folic acid, and 10 cc of sucralfate at bedtime. Those with dysplasia were on doubled therapy: twice-daily doses of the proton pump inhibitor and folic acid, and 10 cc of sucralfate upon rising and at bedtime.
Follow-up regimens were also based on patients’ dysplasia status. Those with no dysplasia underwent conventional endoscopy and chromo-endoscopy beginning 12 months after the initiation of treatment. Those with mild dysplasia underwent these studies beginning 9 to 12 months after treatment started. Those with moderate to severe dysplasia underwent these studies beginning 3 to 6 months after initiating therapy. Patients were assigned a score based on endoscopy findings as well as clinical findings, such as symptoms of reflux and choking; the affected length of the esophagus, the presence of scarring; stenosis or ulcer; the severity of dyspepsia.
“Healing was evident starting at 9 months after treatment began, and most were healed by 48 months with some stragglers at 72 to 80 months,” said Dr. Stowe. “We documented full healing in 72% of very short and short segments, 75% of intermediate segments, and 17% of long segments.” Long segments were defined as more than 6 cm in length. Although healing of Barrett’s esophagus was slightly better in women and those with a family history of Barrett’s esophagus, there was no statistically significant difference by sex or family history for reversal of dysplasia, he said.
When they analyzed their data by the severity of dysplasia, the investigators found that 4 of 5 patients with moderate dysplasia had both reversal of dysplasia and healing of Barrett’s esophagus, as did 8 of 15 patients with mild dysplasia and 8 of 23 patients with indefinite dysplasia.
No patients in the overall group progressed to cancer after 301 patient-years of follow-up. Similarly, they documented no progression among the 48 patients with dysplasia and 177 patient-years of follow-up.
“To my knowledge this is the first study showing a reversal of Barrett’s with noninvasive methods. We find this intriguing and interesting,” said Phillip E. Jaffe, MD, in a phone interview. Dr. Jaffe, who was not involved in the study, is an associate professor of medicine at Yale University School of Medicine in New Haven, Connecticut, and he practices in Hamden, Connecticut. He spoke as a member of the ACG public relations committee.
“Do remember that is a single-center, retrospective study, and it needs to be replicated on a prospective manner, but it gives us hope that people with Barrett’s and dysplasia may benefit from a noninvasive intervention,” Dr. Jaffe added. “We don’t want people to adopt this as a primary mode of therapy until we have a lot more data, but we think it’s interesting.”
I wish that I could promise that every person’s medical dilemma can be cured as simply as my wife’s Barrett’s ultimately was, but of course I can’t. What I can promise is that if you don’t confront and challenge medical authority, and if you don’t understand how to do it effectively, then your chances of being cured go way, way down. Self-treating with alternative medicines and techniques are excellent choices for some people with some health issues, but they are unlikely to be the overall answer especially when you are dealing with many of the more serious health issues, so at some point you are probably going to have to take advantage of the best that conventional medicine also has to offer too. When you do, if you are well prepared with the facts in a form that a doctor who is willing to listen can deal with, your chances of successfully recovering your health are far increased. It really is that simple.
Reject bullshit, do your own research, live long, and prosper.