(updated on 9/25/2018)
(Warning: The drugs employed in the protocol described below have potential side effects. Therefore, I suggest the support of a medical doctor while following the protocol.)
I will keep the story as short as possible. The protocol explained here stopped the disease progressions for the majority of the patients who have tried it. It is mainly about stopping neuroinflammation. You normally see the improvements within the first week. From my observations, the more motor neurons you have left, the more and faster you notice the improvements. At the bottom of this page, you may find a list of links to some of the recent research that support the claims I have been making about the disease mechanism since 2015.
My theory about how ALS happens for the majority of the cases
This theory is based on my personal research efforts and the most valuable feedback I received from other patients since my diagnosis. I will try to avoid using medical terms as much as possible to make the text below more accessible for the people without any biology background.
In my theory, one needs two things to get ALS: Repetitive long-term muscle straining, coupled with an already disrupted BBB (blood-brain barrier), which normally shouldn’t let WBCs (white blood cells) to enter into the CNS (central nervous system). In my case, I have always been a very fast walking person. I could literally move and walk faster than everybody I know. People have always asked me to slow down a bit while walking with them. Quite often, while fast walking, I have been straining my lower-leg muscles to the point that they get numb and could no longer be moved easily (big mistake).
It is known that a disrupted BBB can be caused by many different things, including injuries, infections, toxins, aging, genetics, chronic stress and insomnia. In my case, I believe I have harmed my BBB by not getting enough sleep for several months because of work related issues while living in Germany. Furthermore, we had lots of toxic black mold in our bathroom, which might also be a contributing factor.
Briefly, inflammation starts at the neuromuscular junctions because of repetitive muscle straining. As the neurons are already tagged for destruction (through antibodies) by the immune system at the neuromuscular junctions of the damaged muscle, once the WBCs (and the antibodies) pass the BBB, they simply continue destroying the tagged neurons’ bodies. Since the WBCs are not evolved to function inside the CNS, the nearby neurons eventually get damaged and cleaned-up as well. As long as the infiltration and proliferation of WBCs in the CNS persists, the process continues until all of the motor neurons are lost. Consequently, according to my theory, ALS is just another treatable autoimmune disease.
My theory also sheds light upon the most popular unknowns about ALS:
- First of all, my theory explains why there are specific onset sites of the disease. Not surprisingly, for sporadic cases, the disease always starts at areas that are potentially prone to straining, usually the limbs and some of the bulbar muscles. Then the disease spreads to the other muscles totally based on the neuronal neighborhood at the onset site.
- It is well known that there are huge variances among patients in terms of speed of disease progression. Even for the same patient, progression speed usually changes time to time. According to my theory, both variances are related to the active degree of inflammation.
- My theory also explains why some people are UMN (Upper Motor Neuron) prominent, while some are LMN (Lower Motor Neuron) prominent symptom wise. Such variances among patients can definitely happen based on the locational integrity of the BBB.
- The reason why the incidence of ALS is much higher in elderly is due to the fact that the incidence of disrupted BBB increases very significantly with aging.
- Like most of the other autoimmune diseases, the distribution of sporadic ALS worldwide is mostly random, with an increasing incidence for the populations with lower vitamin D levels.
- There are certain toxins that are known to cause BBB dysfunction (see e.g. the Guam incidents). This is why the people who are exposed to toxins, with the bad habit of persistent muscle straining are more prone to ALS.
- People with ALS feel low on energy most of the time. The reason is due to the fact that the immune system is spending considerable amount of body’s energy while attacking the motor neurons. Depending on the degree of inflammation, feeling low on energy is very commonly seen in other autoimmune disorders as well. This is also why the people with ALS are usually slimmer despite eating a lot, even before the symptoms start.
- 5training your muscles after getting ALS frequently results in faster decline and irreversible functionality loss, as reported by many other patients. As long as your BBB remains not intact, every attack to a neuromuscular junction warrants a secondary attack to the neuron itself. Hence, I would recommend exercising only if your CNS is not infiltrated by the peripheral immune system.
- My theory also explains why people active in sports and military personel get ALS more often than other people. Since those people stress their neuromuscular junctions more frequently, the resultant repetitive oxidative stress causes persistent neuromuscular inflammations. When this is combined with a disrupted BBB, I actually even see no reason to not to get ALS under these circumstances. I bet the guitar prodigy Jason Becker’s ALS started from his hands. I have also heard that he was living sleepless most of time for practicing his solos as much as possible, which might have eventually impaired his BBB.
Why and how the protocol works?
Dexamethasone, which is a very potent corticosteroid, halts the neuroinflammation by stopping the proliferation of immune cells beyond the blood-brain barrier (BBB). It also stabilizes the BBB, which prevents further peripheral immune cells from crossing the BBB. Dexamethasone is also known for its powerful antioxidant properties, which might have some positive effect on the recovery of damaged motor neurons. Imuran supports Dexamethasone’s action by further slowing down immune cell proliferation. Testosterone not only supports the reparative process and improve the regenerative capacity of motor neurons, but it also counteracts some of the important side effects of corticosteroids.
The improvements you will notice will be as follows, usually in this order:
- Reduction in UMN signs such as, spasticity, muscle stiffness, hyperreflexia and pseudo-bulbar effect.
- Reduction in fasciculations.
- Major reduction in serum creatine kinase (CK).
- Improved breathing, swallowing, speaking, walking, eye movements, all sorts of motor activity will get better in time.
The protocol itself:
- Start with I.M. (intramuscular) injections of Dexamethasone every morning, and taper according to this schedule. If I.M. is unavailable, oral Dexamethasone works just fine, but usually with more pronounced side effects, especially at high doses. After reaching 3.75 mg, I recommend switching to oral doses for convenience. Taper down to 0.5 mg.
- Testosterone injections (Primobolan Depot 100, Mg Sustanon 250 mg), once a week to keep your testosterone levels near the upper limits.
- 150 mg Imuran a day. This will help you taper your Dexamethasone dose faster.
- Insulin shots depending on the glucose levels.
- Feel free to take supplements. I recommend taking calcium, magnesium, vitamins (A, B, C, D, E, B12, K2), ubiquinol, pqq, turmeric, cannabis oil, omega 3, resveratrol.
- I recommend a diet that is rich on fats and protein.
- Exercise moderately without straining your muscles.
Some Additional Information About the Protocol:
- I would suggest to get your serum CK level checked just before starting and a week later. For the patients who respond to the protocol, a major reduction in serum CK is usually observed.
- At the end of the week, you will know whether you are responding or not. If you are responding, you continue the protocol.
- The reasons why I prefer Dexamethasone over Prednisone are that it is more potent, has zero mineralcorticoid effect, and your body gets less drug.
- The reasons why I prefered Imuran over other immunesuppression drugs are that it is very well tested, used for many autoimmune conditions (including M.S.) and it is much cheaper than drugs with similar action.
- Testosterone injections are used to push your protein synthesis to its limits. If you are a woman, or already have high serum testosterone, you should consult your doctor about that.
- Insulin is my latest addition to the protocol. When you use high dose corticosteroids, you may have elevated glucose.
Frequently Asked Questions
I need a doctor’s prescription to get these drugs in my country and my doctor doesn’t help, what to do?
Either try another doctor, or depending on the country you are living, you might get the drugs from online pharmacies.
Are the supplements important?
Some of them are rather important. Based on many studies, I recommend you to get at least the following for their following supportive properties:
Vitamin D: People with high vitamin D levels are much less prone to neuroinflammatory conditions. See: https://www.ncbi.nlm.nih.gov/pubmed/27987058 .
Vitamin B12: High intake significantly speeds up axonal regeneration and neurogenesis.
Cannabis oil: A very powerful anti-inflamatory, also known for its immune system regulating properties. Supports neurogenesis as well. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3386505/ , https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4543605/ .
Resveratrol: Protects against muscle wasting. It also elicits beneficial actions in vertebrates in animal models of neurodegeneration by modulating neuroimmune function. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4587342/ .
Turmeric: Countless benefits, see: https://www.healthline.com/nutrition/top-10-evidence-based-health-benefits-of-turmeric#section4 . I consume it with food with lots of black pepper.
Who are the other patients that respond to this protocol?
I was actually keeping a list of people on my website, who has claimed that my protocol has been working for them either. Because of time limitations however, I no longer maintain such a list for a long time, or reply to most of the other people’s messages. Also for various valid reasons, most of the patients clearly state that they want to remain anonymous and I should respect that.
How did you come up with the dosing?
Based on research, personal experience and the feedback I have been receiving from many other patients. The tricky thing is finding a dosing scheme that works for everyone, with minimum side effects, and absolutely without any withdrawal symptoms or disease reactivation. Therefore, the dosing may get updated time to time. I also encourage patients with medical background to experiment with different dosings. Nevertheless, it might be a good idea to inform me first before your trial. Since I have plenty of experience with different dosing schemes, I may give you useful feedback.
I am no longer declining but getting the X side effect from the Y drug, what should I do?
I recommend you to find a good immunologist or an M.S. expert who can understand your situation. There exists rather expensive immunesuppression drugs with less side effects, which might be prescribed by your doctor. For instance, the M.S. drug called Tysabri prevents WBCs from crossing the BBB much more elegantly, and it might potentially replace long term Dexamethasone and Imuran usage part of the protocol.
I am no longer declining for the last X years, can I try to stop following your protocol?
Although it is risky based on the feedback I got from other patients so far, yes you can give it a try. But please taper your Dexamethasone dose down to 0.25 mg very very slowly first. If things go fine, then try to continue with the rest of the drugs and the supplements of the protocol. If not, you may need to restart applying the protocol. I also believe that once the BBB is fixed for good, and the CNS is completely cleaned up from the peripheral immune system cells, one can stop immunesuppression permanently, according to my disease mechanism theory.
Few days after tapering Dexamethasone from X mg to Y mg, my ALS symptoms started to return, what should I do?
This usually happens when you taper too fast. Just return back to X mg and stay there longer than the last time. Also make sure that you are getting the recommended supplements, which might potentially help while tapering Dexamethasone, as most of them have anti-inflammatory and/or regenerative properties.
How is your current condition?
I am not declining since I restarted my protocol in October 2015. Until I came up with my protocol, my legs and arms have already got severely disabled. Luckily, most of my motor functionality is preserved. I can eat, drink, talk, breathe without much problem, albeit slowly. If I haven’t had started my protocol again, all of those rather vital functionality would be long gone years ago. I can also move my limbs, can contract and relax almost every muscle in my body, but not at a very useful degree. My legs help me to stand up and take few steps with the help of two people. My arms support me while sitting. Trunk, neck and facial muscles are almost like a normal person’s. I can definitely feel that they all are getting faster and stronger time to time, but at a barely noticeable rate.
I am currently getting 0.75 mg Dexamethasone daily, and testosterone shots twice a month. Since my neurinflammation is under control with low dose Dexamethasone, I am not getting Imuran since the beginning of 2017.
In the first few weeks while applying the protocol, my improvements were very obvious. Nowadays, they are barely noticable. Why is that?
This is pretty normal and actually reported by almost all patients who have been responding to the protocol. When you get high doses of Dexamethasone in the beginning, your damaged neurons quickly recover in a matter of days and start functioning again. The rate of recovery mostly depends on the degree of motor neuron damage you have already had. Your body’s regenerative capability is also a rather important factor here. This is why testosterone shots and some of the supplements are highly recommended. Insulin also acts as a growth factor and has lots of other benefits:
https://en.wikipedia.org/wiki/Insulin?oldformat=true#Physiological_effects . This is actually why I recommend insulin instead of other glucose lowering meds. Since the time I have stopped my progression, I have been constantly searching for and trying new ways to speed up the recovery process. After trialing them for fair amounts of time, and based on the latest research articles and the input I get from other patients, I add them to the protocol.
Since I started Dexamethasone, I cannot sleep well. What can I do?
This is being reported by most of the other patients, especially at the beginning, while the doses are rather high. Sleeping well is extremely important in the whole recovery process and also for keeping an intact BBB. Among its numerous benefits, one nice side effect of cannabis oil is, it makes falling asleep much easier, just in an hour after getting it. If you cannot access cannabis oil for some reason, then I would recommend to give melatonin a try first. If it doesn’t help, give the drug named Desyrel a try, before going for stronger sleeping aids.
How fast should I taper Dexamethasone?
The rate at which you can taper mostly depends on your active degree of inflammation. If you ever notice that you started to slowly lose your regained functionality, it usually means you have been tapering too fast. In contrast to the higher doses, you typically need to taper much slower at lower doses. If you don’t, you might get withdrawal symptoms, or even worse, the disease might reactivate. Another important factor here is the active integrity of your BBB. Besides using the drugs and supplements of the protocol, there are lots of other supportive things you can do to keep your BBB intact: https://www.selfhacked.com/blog/fix-leaky-blood-brain-barrier/ .
Links to the recent research that support my claims