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Treatment Protocol

Important:  Find a doctor willing to follow this protocol, and test for complications.

Dexamethasone: 0.05mg daily

Take 0.05mg Dexamethasone daily at bedtime

To accurately measure 0.05mg you’ll need your doctor to prescribe the oral solution form of dexamethasone. Since the medication comes in 240mg bottles, the doctor should write the prescription like this:

Dexamethasone oral solution (0.5 mg per 5mL)
Disp: 240 mL
Sig: Take 0.5 to 8 mL daily
0 Refills

Writing it as 0.5 to 8 ml daily allows you to get a 240ml bottle.  Keep the bottle in the refrigerator and pour some into a smaller bottle for dispensing with syringes.

You will also need some 1ml syringes. I recommend these:
“1ml Syringes Without Caps (Pack of 100).”
Fill the syringe to the 0.5ml mark for 0.05mg DEX
https://www.amazon.com/gp/product/B07G76Z5CJ/

Take the dexamethasone right before bedtime. Don’t eat or drink anything for at least 2 hours before, and 2 hours after the dose.

Then put a Tums Ultra (1000mg calcium carbonate) in your mouth immediately.  Let it dissolve instead of chewing it to help wash down the dexamethasone. Then rest for at least 2 hours (or go to sleep) to minimize muscle blood flow.

If you miss a dose, take the missed dose as soon as you realize it, even if you have to take a double dose. This medication is critical for survival, so write down every dose with time and date. Have someone else double check if possible.

I recommend just taking 0.05mg of dexamethasone daily and forget about your symptoms. A lot of factors affect symptoms of stiffness and muscle twitching, including high doses of dexamethasone.  High doses, like I started with, cause lots of problems, including permanent muscle atrophy and weakness. If you increase the dosage based on symptoms, the muscle damage may be permanent, and may actually shorten your life.

Dexamethasone_Oral_Solution_0.5mg_per_5 mL

The basic theory behind this low dose dexamethasone protocol is that ALS is caused by systemic immune cells leaking through the blood brain barrier and attacking motor neurons which are dying from a multitude of causes.

Normally, microglial immune cells in the brain delicately clean up these dead neurons. However, when the microglial cells are overwhelmed, they release chemicals that open up the blood brain barrier so that systemic immune cells, i.e. macrophages, can enter the brain and aid the brain’s microglia in clearing the infection. This is necessary for serious infections like meningitis and encephalitis, which would be fatal without the help of systemic antibodies and macrophages.

However, in autoimmune disorders, opening up the blood brain barrier just accelerates the damage, which opens up the barrier even more. Systemic immune cells and antibodies are too damaging to surrounding tissue to be safe inside the brain. When a few dead, tightly packed axons in the spinal cord are “cleaned up” by systemic macrophages, it kills adjacent axons leading to the vicious cycle of ALS progression.

Dexamethasone is a very strong anti-inflammatory drug that binds to receptor sites in cells. The blood brain barrier is primarily made up of tight junctions between the endothelial (lining) cells of all brain capillaries. The cells are bound together by a protein “glue” that is disrupted by inflammation or physical injury (i.e. blast injuries). Dexamethasone has been shown to restore this protein and restore the blood brain barrier. This keeps systemic antibodies and macrophages from entering the brain and killing spinal cord axons. Thus, it can halt the progression of ALS.

Since the endothelial cells line the capillaries, they are exposed to the maximum concentration of dexamethasone in the blood, after a dose. Hence, very low dexamethasone doses can restore the blood brain barrier without diffusing into the tissue and causing severe and deadly side effects. The most serious is muscle atrophy and weakness, which can shorten the life span of already weakened ALS patients.

This protocol is designed to produce a maximum transient blood level to the endothelial cells of the blood brain barrier, and minimize the tissue level in muscle cells that cause the most serious side effects with ALS.

I’ve taken high doses of dexamethasone (30mg, then 8mg, then 1mg daily). These all caused severe side effects including muscle atrophy, weakness, loss of balance, and steroid withdrawal symptoms including stiffness, low blood pressure, and generalized flu like symptoms (muscle aches, dizziness, malaise, etc.)

0.5mg didn’t cause severe problems, but it did lead to gradual muscle weakening, and steroid withdrawal when lowering the dose.

At 0.375mg (1/2 of a 0.75mg tablet) and 0.25mg daily (1/2 of a 0.5mg tablet), I didn’t notice side effects, but my muscles didn’t get any stronger, and gradually got weaker over time. Lowering the dose to 0.1mg of dexamethasone daily did produce some stiffness and muscle aches, probably from withdrawal, but I have a lot more energy and stamina (for ALS).

I was able to strengthen muscle at 0.05mg daily with no side effects at all. If you have side effects, like muscle weakening, at this dose, try lowering the dose below this with Dexamethasone oral solution (0.5mg per 5ml). NEVER STOP dexamethasone completely for any reason.

I raised the dose several times when I got increasingly stiff from winter cold weather, and after several falls tripping over my right foot drop. The increased dose didn’t help the stiffness, but lowering it back really increased it. So I recommend starting and maintaining 0.05mg of dexamethasone daily regardless of symptom changes.

Most importantly, I haven’t had any progression of major ALS symptoms other than stiffness. I’m still able to talk, swallow, eat, breathe, and walk (stiffly). I walk pretty well with a rollator (rolling walker) when I’m not afraid of falling. And I can still touch type with both hands! My left hand didn’t work well enough to type before I started dexamethasone.

The onset of ALS is a medical emergency. The sooner you start this low dose dexamethasone protocol (if it works), the milder the disability you will have to live with for the rest of your life.

Supplements

Alpha Lipoic Acid

This is a strong anti-oxidant produced by the body that crosses the Blood Brain Barrier (BBB). Under the theory that ALS is caused by a breakdown in the BBB that allows systemic antibodies and white blood cells (macrophages in particular) to enter the brain, anti-oxidants that can cross the BBB should help stabilize it by reducing “oxidative stress.” This article shows that this may be true for MS.

Alpha Lipoic Acid (ALA) comes in 2 forms that are mirror images. The “R” form is biologically active, and the “S” form is not. Most supplements contain both forms in equal amounts, called a racemic mixture. R-ALA is unstable by itself, but companies have found ways to stabilize it.  I recommend taking 1 capsule (100mg) three times a day of  “Doctor’s Best Stabilized R-Lipoic Acid.” It’s absorbed better on an empty stomach, but it’s not critical.

Vitamins

In addition to a multivitamin, it may help to take vitamins D3, B-complex, C, E and B12.

Vitamin E, taken with dinner, may be especially beneficial.  This study  “found that people who reported taking vitamin E supplements regularly for more than 10 years when the study began were 60% less likely to die from ALS than those who did not take vitamin E supplements.”  Be careful not to take too much!  180mg (400IU) is enough, at 12 times the recommended daily dose.

Vitamin A supplements may actually shorten lifespan in ALS according to this study of ALS transgenic mice. It may be because Vitamin A in large doses causes brain swelling. I don’t recommend taking extra vitamin A. There’s plenty in a multivitamin.

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