Amyotrophic Lateral Sclerosis or ALS is a progressive and ultimately deadly disease. Sadly, there are extremely few treatment options available for people with ALS (PALS). The only approved drug that can treat ALS, riluzole, only extends survival for a few months. Other drugs have failed to make a measurable impact on survival in clinical trials. Therefore, it is understandable that PALS and their caregivers often turn to alternative and complementary therapies to treat and manage ALS.
No magic bullet
When discussing alternative approaches to traditional medicine, one must first describe the state of traditional medicine for ALS. Unfortunately, it is rather dismal. There are a tremendous number of agents that have been tested and have failed to show any effect. Examples include celecoxib, ciliary neurotrophic factor, gabapentin, lamotrigine, lithium, talampanel, topiramate, valproic acid, verapamil, and minocycline. Clinical trials are ongoing for antisense oligonucleotide therapy and arimoclomol (both for familial ALS only), ceftriaxone, creatine, dexpramipexole, memantine, and tamoxifen. While it is important to stay optimistic, the track record of drug testing suggests that no single agent will be the “magic bullet” for ALS.
ALS causes problems in the central nervous system: A chance to intervene?
In fairness, it is also unlikely that a single herbal remedy, supplement, or alternative treatment will be the “magic bullet” for ALS, either. That said, all of this testing has revealed some interesting facts about ALS. First, the disease causes a considerable amount of oxidative stress. This oxidative stress occurs in the form of oxygen free radicals that disrupt many vital structures and processes in the brain and spinal cord (e.g., lipid peroxidation, cytoskeletal disruption, and mitochondrial damage). Second, ALS negatively affects mitochondria. Mitochondria are the “power plants” of the cell. One would expect that reducing oxidative stress, protecting mitochondria, and supporting cellular energy would help PALS.
Power in numbers?
Like drug trials, trials on single antioxidants (e.g., high dose Vitamin E) or substances to support cellular energy (e.g., Co-enzyme Q10) have been disappointing. What has not been aggressively tested—but could be helpful—are combinations of these substances. In other words, a single agent may not be the “magic bullet,” but a collection of ingredients that act in similar, even complementary way, could be beneficial. Instead of increasing the dose of a single agent to nearly toxic amounts, perhaps including modest doses of a number of agents that act on similar processes could do the trick. It is something that makes sense intuitively, but is rather difficult to test in a clinical trial (which is why the approach remains largely speculative among physicians and scientists)
- Vitamin C
- Vitamin E
- Vitamin D
- Alpha-lipoic acid
Putative mitochondria protectors:
- Ginkgo biloba
- B vitamins (some block apoptosis/programmed cell suicide)
- Phosphatidylcholine and phosphatidylserine (also help restore cell membranes)
Supports cellular energy production:
- B vitamins (needed for cellular enzymes)
- Coenzyme Q10
- Ketogenic diet/medium chain fatty acids (e.g., caprylic acid)
Complementary Therapies for ALS
Some complementary and alternative therapies may be helpful in controlling ALS symptoms, though research data on their helpfulness is limited. Perhaps the best example of this is acupuncture. Case reports have suggested that acupuncture can help improve ALS symptoms in some PALS, however large scale studies have not been done. The same can be said for related therapies such as art therapy, music therapy, and aromatherapy. If PALS feel better after these therapies and they are not exorbitantly expensive, it seems reasonable to use them as needed. It is important to understand, however, that none of these therapies is a cure.
Not all alternative treatments are the same
Some alternative treatments for ALS such as chelation therapy, mercury removal from fillings, aggressive detox diets, and atypical Lyme disease treatments do not have a sound biological basis. There is a vanishingly small amount of data to support the use of these treatments. It is also possible that some could be harmful. For example, the process required to remove amalgam fillings releases mercury vapors, which can be toxic. Additionally, aggressive detox diets could cause problems in PALS, especially in later stages when calorie intake, lean muscle mass, and overall nutrition are compromised.
It is impossible to concisely describe all of the alternative treatments for ALS that have been tried. On the other hand, it is rather easy to say that almost every single agent that has been tried has failed. With the exception of riluzole (which increases life expectancy by about two months) no single drug or ingredient changes the deadly progression of ALS. One glimmer of hope may be in the combination of ingredients. Since problems can occur with any substance when it is taken in excess, moderate doses of ingredients that have similar and even complementary effects could be potentially helpful in ALS. We will not know for certain until multi-agent clinical trials are conducted, but the possibility is encouraging.