“Snake Oil“ Chapter 60

Have you ever heard of the term snake oil? IAW Wikipedia, “Snake oil is a term used to describe deceptive marketing, health care fraud or a scam. Similarly, snake oil salesman is a common label used to describe someone who sells, promotes, or is a general proponent of some valueless or fraudulent cure, remedy, or solution. The term comes from the "snake oil" that used to be sold as a cure-all elixir for many kinds of physiological problems. “

Let me start by saying that I am not a doctor, nor do I have any medical background. I am just a guy with an opinion. Anything I write here is not medical advice, but it is funny, sad, and smart-ass-ish. Not sure if smartassish is a word, but now that it's published in my blog, it is now.

When you research cures to heal and reverse ALS, you will get overwhelmed by all the information. How do you know what is true and what is snake oil?

The fact remains that there is no known medical cure for ALS. So what do you do? I believe you have two choices: to lay down and allow ALS to take its course, or dive into all of the information and fight. Sometimes we want to find a cure so bad we forget to take the time to research before we accept something that just sounds right.

Below I will discuss what I have learned and mistakes I've made over the past two years and hope it will give you some insight into the truth or snake oil.

Clinical Trials:

Depending on how far along you are in your ALS journey, you can try to get into medical trials. When I was diagnosed and my Neurologist informed me about trials I said, “sign me up." I was ready to fight and wanted In. I was like a hooker on a corner willing to try any drugs or any position that might help me and others. Thankfully, I was only accepted into one non-drug study that tested progression through speech, mobility, and breathing exercises. Needless to say I would be a broke ass hooker.

Although most trials are based on new drugs, there are trials for stem cell therapy and other therapies. The one thing they all have in common is that they take a lot of time and money as PALS wait and die.

Traditional Medicine:

If you follow the traditional medical route, there are several options you can choose. However, it’s my opinion that, with just a few exceptions, most are just trying to keep you comfortable while you slowly die or a cure is found.  Oh, by the way, ALS was first discovered in 1869 and it only took a year to come up with a COVID vaccine for Covid.

There are currently seven drugs approved by the U.S. Food and Drug Administration (FDA) to treat ALS and its symptoms: Qalsody, RELYVRIO, Radicava, Rilutek, Tiglutik, Exservan, and Nuedexta. None of them offer a cure or restore function. Some were shown to slow the decline of physical function in people with ALS, even though they may not see the effect yet. All have possible side effects.  I tried two of them and quit within 30 days.  I felt horrible and since every PALS progress differently, how can it even be proven that the drug slows the progression? Real or snake oil?

Commercial Products:

If you research commercial products, you will find several products that you can purchase out of pocket. The one that seems to pop up most is “The Deanna Protacol. The website states that it "is a patent pending mix of three substance“ and “This product is a natural solution to ALS, a disease that has no effective treatment or cure.” Yet the site tells the story of how it helps PALS. “A solution?” Things that make you go Hmmm!

I tried this also for a month and stopped. I felt nothing different. To be fair the site does say use for 6 months, but at $159.99 I didn’t continue. Is it Real or snake oil?

Holistic/Functional Medicine:

Conventional medicine typically looks at prevention as synonymous with the early detection of disease, the idea being that early detection means a higher likelihood of successful treatment. Functional medicine, however, looks for changes that can be corrected long before a disease occurs. However, since there is no medical treatment and we are far past “before,“ PALS must then turn to alternative methods.

Unlike conventional medicine which has a 100% death rate, holistic/functional medicine has over 40 proven reversals with some PALS 100% reversed.

Recently one of my readers informed me about HealingALS.org. They are composed of a team of medical doctors, naturopaths, nutritionists, holistic medical practitioners, people diagnosed with ALS, caregivers, family members and others dedicated to finding solutions for ALS.

Healing ALS was founded in 2010 by Patricia Tamowski and Scott Douglas when they met Eric Edney, a partial ALS reversal who was diagnosed with ALS at age 59 and was in his 80’s. Eric knew of others who had also reversed ALS and with time they found many more. Since then, they have interviewed over 40 people who have reversed ALS and know of well over 100 ALS Reversals.

Over 100 reversals? Why haven’t five different Neurologists and my other medical doctors told me about this? Could these reversals be true or another version of snake oil?

Curious, I started to research what the website was about. What are they upselling for reversals? Nothing. Do they have proof? If so, how far along were they? Yes, they have documented many reversals at many stages, including one gentleman as far along as me.  The website looks at holistic methods helping PALS explore root causes, and then discussing 47 areas in our lives we should fix.

One of the biggest problems PALS have is constipapation and nutrition, and both are definitely true for me. I’ve been given a good organic food source (Kate Farms 1.5) and for PEG patients it’s very good. However, my Nutritionists were only looking at my weight and vitamin/minerals needed for non-PALS. I was also given multiple medications for constapation and still went only once a week. Doctors recommended more water and medication which only caused diarrhea.

After researching the site for a week, I decided to make some changes. Last Sunday I added probiotics, digestive enzymes, vitamins and routine stretching/exercises. This week I’m happy to report I have pooped four times and I feel good! Winner-winner chicken dinner. Does this mean I found my root cause and I am healed? NO. However, traditional methods have me waiting to die. I said it before and I will say it again, I have no intention of dying anytime soon.

I am only at the beginning of my healing journey and I have a long journey ahead. My next big step is to find a Functional M.D. who wants to help me find the root cause and is willing to think out of the box. Is it possible that I am just so excited about pooping and this is another case of snake oil? I personally don’t think so, but I will take this one step at a time.If this doesn't work maybe I will find a Witch doctor. "Never Surrender, Never Give Up!" Buzz Lightyear

No matter who you are, positive thinking, faith, and action will always make us stronger. We all must do the work to find what is right for ourselves. Don’t just lay down and accept what you are told, or you just might fall victim to SNAKE OIL.

Love and blessings.