I write this blog, - especially this ALS blog – for my family. In the (unlikely) event my maternal grandmother was misdiagnosed and she actually had ALS, I want my loved ones to know what is happening in the world of ALS. By keeping up to date with information, I honour my mother and I honour my family.
Even though this is a personal blog that I write, I am surprised to see people in 144 different countries from around the world click on to my website. I do not advertise my blog since it is a personal one. As of this writing, there have been 1004 views for the ALS Treatments Part 3 blog, 928 views for the ALS: A Tough Road blog, 666 views for the ALS Treatments Part 2 blog, and 507 views for the ALS Treatments Part 1 blog. When I see this, I am sad.
I am sad, because it means that if pALS and cALS ended up here reading this blog, it likely means that they are desperate for information. I know the feeling. My heart goes out to all who read this.
The best review of ALS treatments in 2013 can be found here:
Not much is new.
For those that believe in the scientific process and would like to donate their lives to this cause, there are numerous clinical trials to participate in from around the world. They consist of pretty much the same things for the past while now: stem cells, immunosuppressants, immunomodulators, an irreversible MAO inhibitor, a monoclonal antibody, a tyrosine-kinase inhibitor, yada, yada, yada:
Neuralstem's poster boy, Mr. Ted Harada, gives pALS hope with the very delicate intraspinal stem cell procedure he has received twice now:
However, neurologist Dr. Jonathon Glass, expressed a more realistic view of hope, and stated that this particular stem cell procedure would hopefully help patients decline less rapidly:
This stem cell trial as well as other stem cell trials using intrathecal mesenchyal stem cells are only in Phase II clinical trials right now. It is still early yet to know the outcomes. Either patients and researchers are keeping the results hush-hush, or there are no more poster boys to be found in these scientific studies, and the best that is now hoped for, is a slow demise rather than a rapid one.
If the goal is slow progression, there are umpteen anecdotes in pALS who have come up with their own supplement cocktail to try and stave off deterioration in order to create a slow demise rather than a rapid one for themselves. The difference between the scientific approach of clinical stem cell trials or drugs, and an experimental cocktail attempted by separate individuals, lies in the notion of “proof”. In a disease where the progression is highly variable from person to person, and the powerful placebo of hope is rampant in anything that is tried – be it nutraceutical or clinical drug – science demands proof of efficacy.
145 years in, and there is still nothing efficacious in the world of ALS treatment. Ritulek fits into the nothing category. Is it any wonder that people take their lives into their own hands and search out other answers after having been given a death sentence? People respond to this challenge in their own unique ways.
One way is to participate in clinical trials. Another way is to try and find a combination of nutraceuticals that could be helpful. The very best summary I have ever read regarding supplement protocols and ALS, can be found on the ALSTDI forum. The post was written by a man named Dave J. I have not asked his permission to use it on this blog, however, it is freely accessible on the above mentioned forum, but you must log-in to view it.
For those who have wandered onto this blog and who are not family members, I repeat myself saying this:
Disclaimer: The following information contains my own personal and medical views regarding what I would hypothetically do for myself or a loved one if faced with this life threatening disease. In no way is it a recommendation for anyone with ALS to follow. It is always best to seek the advice of your medical care practitioner when undertaking any type of therapy; and preferably, a medical care practitioner who is open-minded, open-hearted and compassionate.
For my family:
Some of what Dave J. writes is not unlike what I have been suggesting for the past few years. There are some things that I would alter in my recommendations from last year, and some differences I would recommend than what he has written in the “Proletariat Protocol”. Here's what I would do:
- a ketogenic diet (healthy high fat); a high quality protein diet; no junk, no artificial crap, no refined sugar
- a gluten-free diet (or grain-free diet, but only if body weight can be maintained or increased)
- a low beta-sitosterol diet
- lots of coconut oil, fresh vegetables and fresh berries
- bio-identical hormones specific for your needs as determined by a 24-hour urine test
- magnesium glycinate, taurine, B-complex (with 5-MTHF, P5P and methylcobalamin), ALCAR, DHA, lipoic acid and resveratrol
- don't load up on antioxidants as this might squelch your body's adaptive responses; forget the Vitamin E and CoQ10
- only consider TMG if your homocysteine level is elevated
- IV glutathione and IV methylcobalamin
- light weights and gentle exercise (somatics, qi gong, tai chi, yoga or stretching)
- trust your own body to help you determine what is right for you: one size does not fit all
Added to my list this year:
- zinc picolinate (mostly for the prevention of respiratory illnesses)
- Berberine HCl
- Boswellia serrata
Zinc is an interesting mineral that is presently being used for experimentation by patients who are conducting their own DIY trial. Their underlying notion is a problem with copper toxicity:
I sometimes wonder if any of the benefits experienced from this DIY experiment might be due to the fact that zinc inhibits copper absorption, helping some people with hypouricemia. High serum uric acid levels are found in pALS men who have slower rates of progression.
Magnolia is a botanical I've used many times for patients with insomnia. I have not found it to be efficacious at all as a stand alone herb. As for its beneficial effects with swallowing difficulties, I have no clue. You would have to give it a whirl to assess its efficacy.
Do not use 5-HT unless you are also taking L-cysteine (or NAC), L-tyrosine and maca pruriens. (See Dr. Marty Hinz's work at NeuroResearch). Better yet, don't bother taking it unless you need emotional support via nutraceutical therapy. ALS is not a post-synaptic disease.
Curcumin is an interesting botanical medicine. It is highly recommended for all types of conditions because of its anti-inflammatory properties, and that is why pALS are taking it. There is much research on this herb for many other conditions, and yet I have never been impressed with its use as an anti-inflammatory agent in clinical practice. Even the Integrative Medicine website called Natural Standard gives this herb a rating of “C” regarding clinical efficacy for a long list of conditions; “C” meaning “unclear scientific evidence”.
On the other hand, an herb like Boswellia, which also crosses the blood brain barrier and decreases neuro-inflammation, is a much, much better anti-inflammatory in botanical medicine. I've been very impressed with this herb in clinical practice for other conditions, and the Natural Standard gives it an “A” (strong, positive scientific evidence), at least for osteoarthritis, and a “B” (positive scientific evidence) for asthma and brain tumours (with radiotherapy).
I would use Boswellia before I used Curcumin any day of the week. However, the former is a bit hard on the gut for some people, depending on how high in dosage you go.
Last year I talked about Echinacea. I would nix it this year and replace it with Berberis. Berberine crosses the BBB, it is known to decrease microglial inflammation, and it is an excellent botanical for the prevention of many types of microbial infections, especially in people whose respiratory system is compromised. For a wide variety of other conditions in clinical practice, Berberis is one of the best botanical medicines on the planet, IMHO.
I can't leave the topic of Curcumin without discussing a molecule called J147. This molecule is a synthetic extraction of this herb and 100 times more potent. The most amazing thing, is that an incredible man named Eric Valor (whom I have written about before), while being completely paralyzed on a ventilator and with only eye movement, has been able to create a company that will test this molecule on animals prior to using it on ALS patients. Simply, mind blowing!
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Dave J. has listed the do's and don'ts of this illness pretty thoroughly in his "Proleteriat Protocol".
I would also add, not to bother undergoing any type of chelation therapy. 1) There is zero evidence it is helpful. 2) Many important minerals that are necessary for neuronal and muscular functioning are removed during the process. 3) There is no clear evidence that heavy metal toxicity is associated with ALS. 4) There is inadequate information as to whether a chelating agent crosses the BBB, or whether toxic metals are actually removed from neural tissue or redeposited from other tissues back into the nervous system during the chelating process.
Regarding the prevention of ALS, we do not know if this disease can be prevented, and therefore there are no known strategies. If I were to take a guess however, I would recommend that you, my family, do these few things:
- reread my blog on “Grain Brain” and Dr. Perlmutter
- avoid environmental toxins to the best of your ability
- if you partake in an excessive amount of exercise (a marathon race, a 10 hour steep mountain hike, etc.), temporarily take some type of glutathione support immediately after the exertion; this could take the form of NAC, milk thistle, selenium, lipoic acid and resveratrol. With extreme exertion, I personally give myself a glutathione intravenous injection.
Over the past 2 years, on a forum called ALSTDI, I've read thousands upon thousands of posts written by the most incredible people I have ever had the honour and pleasure of reading. They are the heroes of this world. These are people who face insurmountable challenges everyday and come together on a forum to try and find solutions for a disease that has not even had one single solution for the last 145 years now; solutions that have escaped the most brilliant and talented scientists in the world.
This will be my last blog on ALS. If I blog about this topic again, it will be because there has been some incredible break-through treatment that has been discovered.
I hope I will be blogging soon, however, I don't know . . . .
Hope and optimism are on the distant horizon, or right in our laps. It depends upon our perspective.
EDITED TO ADD (Nov. 28/15)
I’ve been following Dr. Marty Hinz’ work for the past 15 years, and have used it successfully for other conditions.
I’ve always thought that ALS was related in part, to some type of neurotoxic insult, and that is why I thought IV GSH was a good idea. GSH does not cross the BBB, nor does NAC. For chronic conditions associated with thiol collapse, L-cysteine is both inexpensive and crosses the BBB, which makes it a better choice for dealing with neurotoxic problems.
However, L-cysteine also transports methyl mercury across the BBB and thus selenium is used to counteract this problem.
5-HT and L-tyrosine are used to prevent neurotransmitter imbalances that can occur with using only sulphur amino acids, since eventually, L-cysteine can deplete dopamine and serotonin.
Long ago, I asked Dr. Hinz if any of his findings in his research would help those with ALS. He said no, because ALS is not a post-synaptic disease. But recently, I saw MND on his list of diseases that could (theoretically) be helped because they were diseases presumably associated with thiol collapse.
I’m not naive enough to think this could be curative for ALS, but I do wonder if it could help just a titch? and maybe a lot in some people?
Just passing this on before I shut this blog down.