Maybe ALS isn't the automatic death sentence we've been told it is

What is ALS?

Amyotrophic lateral sclerosis (ALS) (aka Lou Gehrig's disease) is one of several motor neuron disorders that are thought to have a common etiology. The Cleveland Clinic describes ALS as,

. . . a neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy). Eventually, in people with ALS, the brain loses its ability to initiate and control voluntary movements such as walking, talking, chewing and other functions, as well as breathing. ALS is progressive, meaning the symptoms get worse over time.

Not very common

ALS is a rare disease. A study referenced by Target ALS, predicted that the annual incidence (the number of new cases during a specific period) will increase by 69% in the next 25 years. The current worldwide incidence is 1.9 per 100,000.

One of the only studies to date that has attempted to estimate the number and distribution of future ALS cases predicted that the worldwide annual incidence of ALS would increase by 69% in the next 25 years. The authors estimate the current worldwide ALS incidence to be 1.9 per 100,000.

If the projection is correct, the total number of worldwide ALS cases will increase from 222,801 in 2015 to 376,674 in 2040. An essential part of this estimate is the increasingly aging population. ALS tends to be diagnosed in people over age 60.‍

The annual incidence in 2015 in the US, as reported by the CDC, was similar to the global rate at about 2 per 100,000.

The CDC reports the US prevalence (the number of existing cases during a specific point in time or period of time) as being higher at "roughly 4 to 6 per 100,000 people," while the National ALS registry believes "an upper-bound estimate may be closer to 9.9 per 100,000."  Since ALS is a rare disease, prevalence is calculated as cases per 100,000 instead of as a percentage.

Life expectancy for ALS patients

ALS is the neurodegenerative disease that disabled theoretical physicist Stephen Hawking. Although he became totally paralyzed, ultimately forced to use a speech-generating device with a single cheek muscle, he continued his work researching black holes. Diagnosed at 21 with an early-onset, slow-progressing form of the disease, he died in 2018 at the age of 76, having lived productively with the condition for 55 years.

Not everyone who develops ALS lives as long as Hawking. In fact, ALS News Today states that most people will go through four stages (early, middle, late, and end) and die within two to five years. Since ALS patients are expected to rapidly decline and can donate their organs afterward (unlike cancer patients whose organs may pose a risk to recipients), people diagnosed with ALS are seen as prime targets for euthanasia in locations where it is legal.

If you're diagnosed with ALS do you know what's wrong with you?

The Gold Report has previously explored the topic of medical diagnosis. Drs. Mark Hyman and Mark Liponis, who reversed dementia in a patient diagnosed with Alzheimer's, explained that just because you have a diagnosis it doesn't mean you know what's causing your symptoms. They found the dementia was caused by extremely high levels of mercury, not Alzheimer's. They urge doctors and patients to not let a diagnosis stop the thought process.

Many people mistakenly believe that if you know the name of your disease, you know what’s wrong with you. This myth is pervasive throughout medicine, and it is THE single biggest obstacle to changing the way we do things and finding the answers to our health problems.

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[T]raditionally, once your symptoms have been given a diagnosis, the thought process stops. Neither you nor your doctor have to think anymore. He looks in the recipe book to find a treatment for your disease and tells you what you should do; you, in turn, take a drug that suppresses your symptoms.

Thus, even though a doctor makes a diagnosis of ALS, it doesn't mean the doctor or the patient know what has caused or may have contributed to the illness. Rather than viewing ALS as an automatic death sentence, it's important to determine the factors responsible for the set of symptoms the patient is experiencing.

Jillian Levy, writing for Dr. Axe, provided this list of factors that may contribute to ALS symptoms.

‍◾ Gene mutations
◾ Mitochondrial dysfunction
◾ Heavy metal toxicity
◾ Head and neck trauma
◾ Genetic predisposition
◾ Low levels of magnesium and calcium
◾ Antioxidant deficiency including SOD and glutathione
◾ Depletion of essential fatty acids
◾ Trouble digesting protein properly
◾ Low levels of vitamin E and vitamin B12
◾ Exposure to toxins including pesticides
◾ Problems with the immune system
◾ Smoking
◾ Serving in the military (people who have served in the military are at higher risk of developing ALS, although it’s unclear why)

According to Scientific World, the causes of neurological disorders may include,

congenital abnormalities, genetic disorders, gluten sensitivity, brain injury, spinal cord injury, nerve injury, unhealthy lifestyle choices, or environmental health problems and infectious diseases caused by germs, viruses (ie, HIV, intestinal viruses, West Nile virus, zika virus), fungi and parasites. are among the causes of ALS like symptoms.

Could it be the medications you're taking?

Sometimes the adverse effects of medications induce symptoms of neurologic diseases. Pharmacist Tammie Lee Demler, in an article published in US Pharmacist, emphasizes the connection between drug effects and what appear to be new neurologic disorders.

Along with awareness of the improved health outcomes resulting from drug therapy comes the recognition that drug therapy may also contribute to the emergence of new disorders. . . . The emergence of new neurologic side effects of drugs heightens the challenges prescribers face when considering drug therapy. These side effects can result in potential misdiagnoses, including false psychiatric diagnoses, in the case of some drugs. Unexpected and unpredictable drug interactions can result in a confusing range of symptoms that may be identified as a new medical condition.

Neupsy Key's article "The Neurotoxic Effects of Drugs Prescribed by Non-Neurologists," is a review of classes of drugs which have adverse effects that mimic symptoms of motor neuron diseases and/or may be responsible for initiating them. Some commonly prescribed drugs that have these effects include antibiotics, antivirals, antifungals, transplant drugs, a variety of cardiac drugs, and cholesterol lowering drugs. Author Katie Kompoliti explains that,

[statins] have been implicated in causing toxic myopathy. Statin myotoxicity ranges from asymptomatic creatine kinase elevations or myalgias to muscles necrosis [death of muscle cells] and fatal rhabdomyolysis [breakdown of damaged skeletal muscles].

Statins, the class of drugs prescribed to lower cholesterol, are known to induce neurogenerative diseases, including ALS, Alzheimer's, and Parkinson's. Among the adverse effects of Pfizer's Lipitor, one of several statins, RX List includes muscle wasting, muscle breakdown, confusion or memory problems, loss of coordination, and other serious effects. Dr. Duane Graveline, a medical doctor and former astronaut died from statin induced ALS, even though he had permanently discontinued the drug after experiencing statin-induced amnesia. He wrote about his experiences on his website Spacedoc.

Motor neuron diseases at the cellular level

Dr. Jay Lombard, who has been researching the cause of motor neuron diseases, believes there are common etiologies among them, including infections (as listed by Scientific World above) and misfolded proteins. Lombard told Tom Bilyeu, host of Impact Theory, “My goal as a clinician is to help you live with ALS, not die from the condition.”

Dr. Graveline and Dr. Dale Bredesen (who has reversed Alzheimer's in patients by addressing nutrition and lifestyle issues) have also noted that misshapen proteins may be involved in the etiology of the diseases.

Dr. Graveline wrote that one of the effects of statins was abnormal proteins,

It seems that a consequence of the inhibitory effect of statin drugs on the mevalonate pathway is the induction of abnormal tau protein phosphorylation. Tau protein phosphorylation goes on to form neurofibrillatory tangles, long known to be the prime suspect in causing the slowly progressive neuronal degeneration of Alzheimer's disease.

. . . Research scientists are now finding that this mechanism appears to be true for ALS and many other forms of neurodegenerative diseases as well. They have even coined a new word for this, the taupathies.

He also noted that ALS patients fare better when their LDL cholesterol is higher, another indication that the use of statins, prescribed to lower LDL cholesterol, may need to be reconsidered.

Reuters reported on 28 April 2008 that elevated lipid levels (also called hyperlipidemia and high cholesterol) appear to significantly improve survival in patients with ALS. Investigators have found that when patients with ALS have a hyperlipidemic profile, their survival is much better. Further confusing traditional medical philosophy, when their LDL cholesterol level is high and HDL low, their survival is the best — just the opposite of prevailing medical opinion. (Emphasis added.) 

Dr. Bredesen tweeted Medical Express's finding that soluble tau (tubulin associated unit) protiens may be responsible for the disease.

Can motor neuron diseases be reversed?

Dr. Bredesen has developed a protocol for reversing dementia which Dr. Andrew Greenland describes as a comprehensive approach that addresses "the underlying causes rather than just focusing on the symptoms." Consisting of personal investigation, dietary modifications, lifestyle interventions, and environmental detox, he writes that

[t]he Bredesen Protocol offers a paradigm shift in how we view and treat Alzheimer's disease. It offers hope and clarity in a field where uncertainty has long reigned supreme by acknowledging the disease's diverse origins and advocating a thorough, root-cause approach.

Since the various neurodegenerative diseases appear to be related, Dr. Bredesen believes that tweaking his protocol may help patients with ALS, Parkinson's, Lewy Body dementia, and more. He discusses this with Amos Institute founder Amylee Amos, MS, RDN, in the video below.

ALS reversals

Duke University neurologist Rick Bedlack has been researching ALS with the goal of helping people reverse their disease. To date, he has found 61 confirmed ALS reversals from different neurologists dating back to the 1960s.

In the video below, "2024 ALS Reversals Update," hosted by ALS Reversals founder Indu McFinn, Dr. Bedlack talks about those reversals and how he is working to help other ALS patients reverse their disease. Introducing Dr. Bedlack, McFinn said that,

he spearheads the ALS Untangled program an international initiative leveraging social networking to explore alternative and off-label treatment options for ALS patients. Additionally he leads the ALS reversal program dedicated to unraveling the reasons behind ALS recovery and working towards making such occurrence more frequent. (Emphasis added.)

47 steps to regaining health

Healing ALS offers patients a 47 step reversal self-study course, provides an explanation of what each one of the people in Dr. Bedlack's list of confirmed ALS reversals did to heal themselves, and provides a four week boot camp led by people who have reversed ALS. The first boot camp, video below, reviews basics, diet, supplements, and gut function.

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The information contained in this article is for educational and information purposes only and is not intended as health, medical, financial or legal advice. Always consult a physician, lawyer or other qualified professional regarding any questions you may have about a medical condition, health objectives or legal or financial issues.

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