In my book, Honest Medicine, I profile nine patients whose lives were changed with lifesaving treatments their doctors never told them about, and probably didn’t know about. They found these treatments through their own research. These patients had conditions ranging from multiple sclerosis and epilepsy to lupus and Crohn’s disease. Each patient’s story has the same underlying message: “Don’t just listen to your doctor; listen to that small voice inside you. Follow your gut.”
It took a long time for most of these patients to bravely follow their guts and find the treatment that worked for them. Like us, they’d been conditioned to believe everything doctors tell them. That faith in our doctors’ authority sometimes leads us to ignore important leads coming from elsewhere—from other patients who’ve acquired valuable knowledge and had positive results, from support groups that have access to more diverse information sources than a single doctor might, and from articles and research we find.
Here are seven tips to help you follow your gut to get the medical treatments you need sooner rather than later.
1. Know when a treatment your doctor recommends isn’t working.
Doctors usually recommend treatments they hear about from pharmaceutical representatives, other doctors, and medical journals. But these treatments don’t always work for individual patients. When you know a treatment isn’t working, don’t just be passive and take a “wait and see” attitude. Take action and look for a treatment that will work.
2. Find reliable websites online and start doing research.
There’s a wealth of health-related information online, but you need to learn which websites are credible and which are not. For instance, some of the slickest, best-designed websites may really just be fancy ads for a pharmaceutical company’s latest drug. Also, prestigious websites of presumably reputable institutions may also have financial ties to drug companies or other hidden agendas. It takes practice to learn which sites to trust. Be smart, persistent, and wary.
3. Stay open to “patient-based evidence.”
Patient-evidence-based treatments are treatments that, although they haven't gone through the rigors of Phase 3 clinical trials the FDA and doctors like to see, have been used successfully for many years by thousands of patients. For instance, low-dose naltrexone (LDN), one of the treatments I feature in my book, has been used successfully since the mid-1980s to treat autoimmune diseases such as multiple sclerosis, lupus, rheumatoid arthritis, and Crohn’s disease; the Ketogenic Diet, another treatment in my book, has been used since the 1920s at prestigious institutions such as Johns Hopkins and the Mayo Clinic to treat intractable epilepsy. Your research could uncover a patient-evidence-based treatment that will work for you.
4. Harness the “crowd wisdom” of online patient groups.
Once you’ve found a promising treatment, look for patient groups to join online. Through these groups, you benefit from the research and experience of many people — sometimes thousands — who have shared the same challenges and medical roadblocks as you. You'll learn about real patient experiences with a particular treatment. Most doctors want patients to only use treatments that have gone through the “gold standard” FDA clinical trials. However, not all treatments get to go through this level of trialing. Patients care more that lots of other patients have found a treatment useful. If a treatment truly works, you'll often find many online groups devoted to it.
5. Share information with your doctor professionally and respectfully.
Schedule an appointment to discuss the new information you’ve found. Doctors are busy, so prepare a packet of well-thought-out information — including, if possible, small studies. In the case of low-dose naltrexone, for instance, there have been small studies conducted by prestigious institutions (Penn State, Stanford, University of California) — a big plus. These studies are included in PubMed; doctors love PubMed. What you’re doing is presenting a case using your doctor’s “language.”
6. Know when to hold and when to fold with your doctor.
If your doctor gives you poor reasons for not trying a treatment, find a more open-minded doctor who will help. Support groups and online patient groups may be invaluable. Often, they can recommend prescribing doctors who have been willing to work with patients using patient-evidence-based treatments. For example, CharlieFoundation.org has lists of hospitals that administer the Ketogenic Diet for children with epilepsy. LDN patient advocates have lists of prescribing doctors, as well.
7. Finally, listen to your gut and be an empowered self-advocate.
We are accustomed to being passive, not active, regarding our health, especially when faced with a daunting condition over which we feel we have no control. Rather than getting discouraged, try to tune in to that intuitive inner voice that’s asking, “Is this treatment really working? Have I really done everything I can do?” You’ll know when it’s time to take action. All the patients I interviewed for my book said they had a “moment of truth” when they “just knew” their gut was telling them what to do. Listen to your gut. It could save your life.
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