Guide to Thrive

I am often asked about the various treatments I take and how I obtained them. With ALS unfortunately, there is no standard protocol that works for every patient. By clicking on the plus sign, you will see both the description of the treatment, as well as the dose and administration.

This guide is broken into three sections:

• Treatments
• Symptom Management
• Other Therapies 

Please consult with your medical professional before trying any of the treatments below. 

Treatments 

• Background: A combination of nearly two dozen amino acids and nutrients. The manufacturer claims to have read through over 2,600 studies selecting the most important and valuable nutrients and amino acids to get combined into the product. I chose to add this to my protocol because of the positive, yet anecdotal, feedback on ALS forums.  
   
   
• Trials: None 
• Dose: 13 grams, twice a day
• Side effects: Minor loose stomach
• Benefits: TBD

TheracuramiN

• Background: At least four of curcumin’s purported mechanisms of action might be relevant in treating ALS: modulation of neuroinflammation, reduction of oxidative stress, amelioration of protein aggregation, and alteration of the fecal microbiome. Of the 43 confirmed ALS reversals by Dr. Richard Bedlack, three have been on curcumin. NEALS.org

   

• Trials: Since
• Dose: 90 mg twice a day
• Side effects: None
• Benefits: TBD

L-Serine

• Background: Serine is a “non-essential” amino acid which humans can synthesise. Serine exists in 2 forms: L-serine and its mirror image D-serine. L-serine is used in making proteins, while D-serine has other roles including acting as a neuromodulator. Both forms of serine can cross the blood brain barrier and enter the central nervous system. 
• Trials: ALSUntangled, Ogimi 
• Dose: 15 grams twice a day 
• Side effects: None 
• Benefits: Slows progression 

AMX0035

• Background: AMX0035 is an oral combination of two small molecules, sodium phenylbutyrate (PB) and tauroursodeoxycholic acid (TUDCA). The therapy candidate is designed to reduce nerve cell death by blocking key cellular death pathways that originate in the mitochondria and endoplasmic reticulum — two key players in both nerve cell death and neuro-inflammatory processes. 
• Trials: AMX0035
• Dose: 3 grams sodium phenylbutyrate, 1 gram TUDCA, twice a day
• Side effects: None 
• Benefits: TBD

Glutathione Iv infusion

• Background: Glutathione is the body’s master antioxidant and is the most powerful antioxidant for the brain and entire nervous system. It combats oxidative stress, detoxifies the body, supports the immune system, and assists in cell function and repair. Oxidative stress and the associated cell death have long been implicated in ALS as have deficiencies in immune system function and cell energy production.
• Trials in ALS: NCBI,  Neurology
• Dose: 2 grams, by infusion, twice a week 
• Side effects: None
• Benefits: TBD

Nad+ IV Infusion

• Background:In addition to its pivotal role in the mitochondrial oxidative metabolism that fuels cells, NAD+ drives the activity of sirtuins. The human genome encodes seven sirtuins. They carry out multiple functions, including deacetylation of transcription factors, histones, and other targets, and are involved in processes known to go awry during aging and in neurodegenerative disease, including energy metabolism, inflammation, and DNA repair.

  Originally taken in a 500 mg pill manufactured by Elysium under the brand name Basis, I switched to IV administration due to the direct access to the bloodstream and much higher dose.

• Trials: PubMed
• Dose: 1.5 grams, by infusion, twice a week 
• Side effects: Temporary light headedness, mild chest tightening, all rate dependent
• Benefits: TBD

CuATSM

• Background: CuATSM is a small artificial molecule able to cross the blood-brain barrier and deliver copper to cells containing damaged mitochondria, the cell compartments responsible for the production of energy. Damaged mitochondria are considered a hallmark of several neurodegenerative disorders, including ALS, Parkinson’s disease, Huntington’s disease, and Alzheimer’s disease. Since CuATSM delivers copper only to damaged cells, leaving healthy cells unharmed, the idea is to use this molecule to target only unhealthy cells and reduce the damage caused by the disease.
• Trials: NCT04082832 
• Dose: 72 mg CuATSM with 100 mg sodium gluconate, once a day
• Side effects: None
• Benefits: TBD

Ibudilast

• Background Ketas (ibudilast) is a phosphodiesterase inhibitor for the treatment of bronchial asthma and for cerebrovascular (brain and blood vessel) disorders, particularly the improvement of post-stroke dizziness. 
• Trials: Since 
• Dose: 50 mg twice a day.
• Side effects: None
• Benefits: This has had the greatest impact, almost completely stopping the progression.

Riluzole

• Background: Riluzole was approved by the FDA in 1995 and is thought to interfere with the activity of glutamate, one of the chemical messengers that transmit signals between nerve cells. Too much glutamate in the brain and spinal cord can be toxic, as is the case with ALS.
• Trials in ALS: None 
• Dose: 50 mg twice a day 
• Side effects: None
• Benefits: None perceived 

Stem Cell Treatment

Background on this. 

Symptom Management

• Background: Gabapentin is a modulator of the glutamatergic system and has been shown to prolong survival in the transgenic model of familial ALS. It has also been demonstrated to slow the decline of arm strength in human sporadic cases. It was prescribed for me to combat spasticity. 
• Trials in ALS: PubMed
• Dose: 300 mg, once a day 
• Side effects: Severe drowsiness at higher doses 
• Benefits: Reduction in spasticity

Tizanidine

• Background: – Tizanidine is a short-acting muscle relaxer. It works by blocking nerve impulses (pain sensations) that are sent to your brain. Tizanidine is used to treat spasticity by temporarily relaxing muscle tone.
• Trials: NBCI 
• Dose: 25 mg, twice a day 
• Side effects: None 
• Benefits: Reduction in spasticity 

Vyvanse

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Nuedexta

• Background: etas 
• Trials in ALS: Since
• Dose: etas 
• Side effects: etas 
• Benefits: etas 

Lexapro

• Background: etas 
• Trials in ALS: Since
• Dose: etas 
• Side effects: etas 
• Benefits: etas 

Baclofen

• Background: etas 
• Trials in ALS: Since
• Dose: etas 
• Side effects: etas 
• Benefits: etas 

Marijuana Oil, aka Jeremy Schreiber Oil

• Background: Suspended in MCT oil, this is a 1:1 mixture of THC and CBD. 
• Trials in ALS: Since
• Dose: 10 mg twice a day. 
• Side effects: None
• Benefits: Reduces spasticity, saliva, depression, anxiety, and cramping. Improves overall full body relaxation. 

Magnesium Chloride

• Background: etas 
• Trials in ALS: Since
• Dose: etas 
• Side effects: etas 
• Benefits: etas 

Other Therapies 

There is a lot of controversy over ALS and whether exercise is good or bad. What I have found to be the most helpful is active resistance in all exercises. Simply being passive doing, or range of motion exercises, are good for stretching, but adds no additional value.  Your nerves are dying, making purposeful movement difficult. This doesn’t mean your muscles stop working.

During physical and occupational therapies, I work with the therapist on each movement while they are there to guide and assist. I will not allow them to do the work for me.

 By applying this effort during every session, I have maintained strength in my arms, legs, and core. I plan on writing a guide for fitness and ALS in the near future. I hope it is of help to you.

Mental health

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