I recently watched a documentary on the life and work of Justin Yerbury, a basket-ball player turned scientist who has motor neuron disease (also referred to as ALS) and is seeking a cure. It was aired on ABC and called The Enemy Within – Australian Story
When Justin Yerbury’s family members began to die from motor neurone disease he made a life-changing decision.
He turned his back on a professional basketball career and enrolled in a science degree. Almost 20 years later, he is an internationally recognised expert on the disease, leading the way in the search for a treatment.
Recently, however, Justin’s work took on a terrible urgency as he too developed symptoms of MND.
As Australian Story filmed with Justin and his family, his condition deteriorated dramatically, requiring difficult decisions to enable him to continue his search for a cure.
Having met Justin in 2017, Professor Stephen Hawking recorded the introduction to this story shortly before his death from motor neurone disease.
(the Australian spellings are neurone instead of neuron and recognised instead of recognized)
I felt very moved by his story and work and felt compelled to reach out to Dr. Yerbury to share what I have learned about this condition in the last few years. I know of a number of practitioners who work with individuals with this condition and even some colleagues with family members who have been diagnosed with this condition. I have also had enough queries that it’s time for a blog post on the topic so you are informed too.
What is Amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND)?
Let’s start with the fact sheet on Amyotrophic lateral sclerosis from the NIH (National Institute of Neurological Disorders and Stroke). They describe ALS as follows:
Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.
ALS belongs to a wider group of disorders known as motor neuron diseases, which are caused by gradual deterioration (degeneration) and death of motor neurons. Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.
I encourage you to watch the 30 minute program if you want to learn more about this condition and Dr. Yerbury’s work (they call it MND rather than ALS in the documentary.)
You may also be familiar with the life and story of Professor Stephen Hawking – he had ALS or motor neuron disease.
Ketogenic diet for ALS?
Here is some of the information I sent to Dr. Yerbury, explaining my work as a nutritionist working with women with anxiety using nutritional psychiatry approaches. Many of these nutritional psychiatry approaches – such as the SMILES study – have been spear-headed in Australia by Professor Felice Jacka.
I’ve recently being looking at the growing research base on the ketogenic diet and mental health and when I saw his story on ABC my first thought was – I wonder if there is research on ketogenic diets and ALS/MND? After a very quick search I found these papers:
there are strong epidemiologic data showing that malnutrition is a common symptom of amyotrophic lateral sclerosis both in humans and in mice and may contribute to disease progression. There is also epidemiologic evidence that increased dietary fat and cholesterol intake might reduce the risk of amyotrophic lateral sclerosis and the rate disease progression. Finally, data from animal studies strongly suggest that increasing dietary intake of fat ameliorates disease progression. However, determining whether amyotrophic lateral sclerosis patients should be treated with a high-fat or ketogenic diet can be based only on randomized double-blind placebo-controlled interventional trials.
Metabolism-based therapy [which includes the ketogenic diet] has been used successfully in the treatment of seizures but study of its use in other neurodegenerative disorders [such as Alzheimer’s disease, Parkinson’s disease and ALS] is growing.
A gluten-free diet?
We must always consider gluten with every chronic health condition. There is a case report of celiac disease with neurologic manifestations misdiagnosed as amyotrophic lateral sclerosis:
he was diagnosed as having CD, and a gluten-free diet was immediately begun. At a 4-month follow-up, his weight and the quality of his stool had improved gradually, and the neurological manifestations had not progressed.
Another study reports that in certain cases, ALS may be associated with autoimmunity and gluten sensitivity, with elevated transglutaminase 6 antibodies in the serum of 23 patients.
GABA and 5-HTP: the Deanna Protocol
Awhile back I was contacted by someone in my community about the Deanna Protocol for ALS because it uses amino acids GABA and 5-HTP and other nutrients like niacin and CoQ10:
It is determined that the substances in the DP™ Plan provide energy to cells that are dying and in doing so keeps them alive. This is very important because when nerve cells die, they release glutamate which kills the contiguous cells. If too many cells are dying then we cannot supply enough energy to keep up with the rate of death of the cells. When the DP™ Plan is taken in sufficient quantities, it will support the nerves that are challenged by glutamate.
As you may already know I use targeted individual amino acids such as GABA and tryptophan/5-HTP with clients so I am very familiar with their therapeutic benefits for anxiety and I am fascinated they also ease symptoms in ALS.
There is an animal study supporting this approach: Metabolic therapy with Deanna Protocol supplementation delays disease progression and extends survival in amyotrophic lateral sclerosis (ALS) mouse model.
Anxiety and depression
There is also research indicating that psychiatric symptoms often precede an ALS diagnosis:
neuropsychiatric conditions are overrepresented in amyotrophic lateral sclerosis (ALS) patient kindreds and psychiatric symptoms may precede the onset of motor symptoms…. A diagnosis of depression was significantly associated with a first record of ALS ≥5 years later, in keeping with growing evidence for major depressive disorder as an early marker of cerebral neurodegeneration.
This doesn’t mean if you have anxiety or depression that ALS or another neurodegenerative disorder is in your future, because we can address so many of the root causes before we get to that diagnosis. Many of the nutrients in the Deanna Protocol will help both the person with ALS and the caregivers who also suffer psychological distress.
Environmental toxins and ALS
We recently spent 3 days at Shell Harbour just south of the Wollongong area and we loved it!
As beautiful as it was I couldn’t help but be concerned about the toxins being released into the air from the steel production plants. Dr. Yerbury lives in the area and is conducting his research at the University of Wollongong. I know toxins play a role in many diseases and wondered about an ALS connection. I found this paper: Association of Environmental Toxins With Amyotrophic Lateral Sclerosis
I also shared that I’m a total research geek and pretty passionate about the power of nutrition, lifestyle and environmental factors because this was how I was able to eliminate my own anxiety and panic attacks.
You can learn more about Dr. Yerbury and his publications here. We appreciate the work him and his research team are doing and thank him for sharing his story.
It would be wonderful if some of this information can help Dr. Yerbury and even be considered for future research by his very passionate research team. I also hope this information will be helpful for you or a loved one suffering with ALS or MND.
Maybe Lyme disease is a component here also? If I recall correctly, Dr. Dietrich Klinghardt tested all his ALS, Parkinson’s and MS patients for Lyme and the infection rate was 100%. I might be mistaken but I’m pretty sure the results were 100%. Also, the online Lyme Support forum I belong too posted an article stating that Stephen Hawking’s Father did research with ticks when Stephen Hawking was just a boy and that Stephen may have been exposed to a particular tick involved in his Father’s research. . I think that Stephen had been tested somewhere along the line for Lyme, but the testing did not look for the particular tick strain that his Father was working with.
Jean
I did not know about the Lyme connection with Stephen Hawking – fascinating! (I’d love that link from the Lyme Support forum?) Since conventional Lyme testing falls short in so many instances I’m not surprised. Even Lyme testing done by a Lyme literate doc like Dr. Darin Ingels may miss so much – it seems we’re just testing the tip of the iceberg. Also Lyme is not recognized in Australia although the Lyme Disease Association of Australia is trying to educate about Lyme-like disease http://www.lymedisease.org.au/
I’ve heard Dr. Klinghardt talk about Lyme and ALS, Parkinson’s, Alzheimer’s and MS so I should have had Lyme listed.
So thanks for the reminder – so yes Lyme disease and other infections should also be ruled out. I usually add something like this to my blogs: A complete functional medicine evaluation should be done in order to rule out all other possible root causes such as infections, nutritional deficiencies, dietary impacts etc (I’ll update the blog with this now!)
What is also new to me is the 100% correlation Dr. Klinghardt finds – do you recall where he said that? The research is mixed with some studies saying no connection or it’s unlikely to be a factor (https://www.ncbi.nlm.nih.gov/pubmed/19697382) and some studies reporting a connection (https://www.ncbi.nlm.nih.gov/pubmed/2334308) but it may due to the testing issue. Also, Klinghardt using his own testing method so that may be why he’s seeing 100% correlation.
Klinghardt is also an advocate for an EMF-free environment and there is very likely a connection there too – Association between extremely low-frequency electromagnetic fields occupations and amyotrophic lateral sclerosis: a meta-analysis https://www.ncbi.nlm.nih.gov/pubmed/23189129
I think I deleted the Lyme Forum post regarding Stephen Hawking but I am putting the word out to both Lyme forums that I belong to in an effort to find it. I Googled for the original article but couldn’t find it. But there was some information on Stephen Hawking’s Father’s research I came across. If I hear from either of my groups, I will forward the link that was in the original post.
I think the last time I heard Dr. Klinghardt talk about the 100% Lyme connection with ALS, Parkinson’s and MS was on an actual video — I was very surprised to hear that. Since I have had Lyme for 30 years, I read a lot and watch a lot of what Dr. Klinghardt has to say. And I’ll see if I can find that quote. It may have been on a recent online Summit, I’m not sure.
Trudy, I hadn’t thought about the fact that Dr. Klinghardt would be using his own testing methods. Thank you for that reminder.
With regard to the Lyme spirochete, I read something from a biological dentist stating that upon looking for infections resulting from root canals, spirochetes were found, which were very similar to Lyme spirochetes; and he brought up the possibility that perhaps many “positive” results for Lyme, might actually be these dental spirochetes “fouling” up the test results . For myself, I didn’t get really sick until immediately after having two root canals some twenty-five years ago or so, so that I found very interesting. I had two Lyme tests many years ago that both came out negative. My doctor and I didn’t know these tests were so unreliable.
So Lyme was dropped out of my thinking; thus a CFS diagnosis and then Fibromyalgia. But Lyme testing approximately 6 years ago (IGeneX) showed up positive Lyme.
Jean
Thanks for this additional info and glad you connected the dots for yourself. So interesting about the root canal infections and spirochetes very similar to Lyme spirochetes!
I did find this on Stephen Hawking and his father doing Lyme testing https://www.lymeneteurope.org/forum/viewtopic.php?t=3647. Very interesting
I have heard dr. Klinghart say that in autopsies with MS patients that he has tested 100 percent have had the BB bacteria. Not sure about ALS.
Here is the link that was forwarded to me just now regarding Stephen Hawking and his Father’s research with ticks:
https://www.lymeneteurope.org/forum/viewtopic.php?t=3647
The lyme disease connection is quite possible. Watch the movie under our skin. One guy profiled has ALS but treats with antibiotics and survives. We had a friend who was diagnosed about seven years ago with ALS and at the time we didnt know it was lyme that my husband had and therefore hadnt heard about lyme, ALS and the MS connection. I dont believe this guy had depression though. As soon as he got the diagnosis he told his wife they were going to have as much fun possible while he still could and they did. The odder thing is that she had MS. They were avid outdoors people. How does one couple end up with both MS and ALS? It does seem like they could be Lyme? In canada we have one of the highest rates of MS and the lowest rate of lyme.
I found this online. https://brokenquiet.wordpress.com/tag/als/
It states: Sclerosis (MS)
Amyotrophic Lateral Sclerosis / Lou Gehrig’s Disease (ALS)
Rheumatoid Arthritis (RA)
Chronic Fatigue Syndrome (CFS)
Fibromyalgia
Alzheimer’s
Parkinson’s
Food allergies
Psychiatric illnesses
These diseases have no known causes. Some evidence suggests the cause is Lyme. Just as the Syphilis spirochete causes dementia, perhaps the Borrelia burgdorferi spirochete causes Alzheimer’s. Dr. Alan McDonald, MD, extracted DNA from 10 Alzheimer brains that came from the Harvard University Brain Bank. The spirochete that causes Lyme Disease was found in seven out of 10 of those brains (1). Dr. Dietrich Klinghardt, MD has not had one single MS, ALS, Parkinson’s, or Alzheimer’s patient in the past five years who did not also test positive for Lyme. Likewise, people with late-stage Lyme often develop Alzheimer’s and Parkinson’s, and female Lyme patients are especially likely to develop MS, according to Dr. Klinghardt (1). A correlation definitely exists.
Another example is Dr. David Martz, MD, who was diagnosed with ALS and given two years to live. He declined to the point of being unable to be active for more than an hour. He was treated by intravenous antibiotics for Lyme Disease, and within a month Was able to be active for give hours. His doctor believes that without the Lyme treatment, Dr. Martz would have declined just like any ALS patient, eventually being unable to breathe or swallow (1).
I think the last person that was featured in the files under our skin.
Nancy
Thanks for sharing this link! I had not heard the story about Dr. David Martz, MD. I will add “Under Our Skin” to the list of documentaries to watch http://underourskin.com/
Excitotoxins are linked to ALS as well.
http://www.wnho.net/aspartameandgulfwar.htm
Jennifer
Thanks for this link – I love Dr. Blaylock’s work (even if we don’t agree on the safety of glutamine). It would be super if this article provided study links. I did find this recent research on ALS and excitotoxicity – they report a genetic factor so clearly some people may be more effected than others https://www.ncbi.nlm.nih.gov/pubmed/27417710
And this paper – Altered metabolism of excitatory amino acids, N-acetyl-aspartate and N-acetyl-aspartyl-glutamate in amyotrophic lateral sclerosis. https://www.ncbi.nlm.nih.gov/pubmed/8457887 (useful even though it doesn’t mention MSG or aspartame)
ALS runs in Dr. Yerberry’s family – an aunt and sister passed away – so we know there is also this genetic predisposition.
Regarding aspartame: when I first became ill many years ago, I was working in the aerospace industry and was having an extremely difficult time with Multiple Chemical Sensitivities. Sometimes it felt like I was going to lose consciousness when any kind of unusual odors were in our office area, even the ink heating up in the printers we used.
One day I decided to get some sugar-free gum from our vending machine. Immediately after putting it in my mouth, my whole face started spasming and I had to get out of the office for a long while in order for it to subside. I really never had used much aspartame in anything — as I never liked the taste of it. This one time was overwhelming and I never used it again in anything.
My ex-husband recently died of bulbar-onset ALS. I do not know what his exposure to toxins was for the last twenty years, but I know what his life was like before we divorced. He suffered from lifelong depression and was very emotionally unstable and prone to extended bouts of rage, verbal abuse, and narcissism. He bit his nails deep into the quick, and refinished furniture using toxic chemicals, which easily entered his system, especially in the compromised tips of his fingers. At that time, I was concerned about the chemical exposure, but he did not share that concern.
Lorna
I am sorry for you loss but appreciate you sharing your ex-husband’s story here so we can all learn. Any chemical exposure must be considered in all chronic health conditions and it’s something I check with all my clients.
I don’t know much about refinishing furniture except what I’ve heard from friends and the odd time I’ve been in the vicinity and smelled some of the toxic products.
I found these for other blog readers
– The Dark Side of Furniture Restoration http://www.acirclehome.com/blog/2017/8/16/on-the-darker-side-of-furniture-restoration
– 9 Toxic Chemicals Found In Furniture: Is Your Home A Hazard Zone? https://www.medicaldaily.com/9-toxic-chemicals-found-furniture-your-home-hazard-zone-256572
– EPA wants to restrict sometimes-deadly paint stripper chemical https://www.publicintegrity.org/2017/01/12/20589/epa-wants-restrict-sometimes-deadly-paint-stripper-chemical
– Stripping Painted Furniture https://www.thisoldhouse.com/how-to/stripping-painted-furniture (lists types of strippers by toxicity levels)
Regards to ALS and chemicals I found these:
– Occupational exposures and the risk of amyotrophic lateral sclerosis https://www.ncbi.nlm.nih.gov/pubmed/27418175 (methylene chloride/paint stripper was not reported to be an issue but formaldehyde was)
– Occupational formaldehyde and amyotrophic lateral sclerosis https://www.ncbi.nlm.nih.gov/pubmed/28585120
Of course, many of these chemicals also impact neurotransmitter levels like serotonin https://www.ncbi.nlm.nih.gov/pubmed/29506457. And with his lifelong depression, emotional instability, bouts of rage, verbal abuse, and narcissism – low serotonin levels may also have been a factor.
Is this GABA the same as gabapenten used for neuropathy? Is this prescription? What do I tell my Dr to order it?
Amy
GABA is not the same as gabapentin. GABA is an amino acids that can purchased in supplement form and trialed to support low GABA symptoms (like physical anxiety, stiff and tense muscles, stress eating, insomnia). Gabapentin is a prescription drug with very similar side effects and withdrawal effects to benzodiazepines. Your doctor will very likely not know about GABA (unless he is trained in functional medicine) but this blog and my book “The Antianxiety Food Solution” on Amazon here http://amzn.to/2kptFWm (affiliate link) explains all about it and how to use it.
More and more evidences indicate that diseases of the central nervous system have been seriously affected by fecal microbes. However, little work is done to explore interaction between amyotrophic lateral sclerosis (ALS) and fecal microbes. In the present study, high-throughput sequencing method was used to compare the intestinal microbial diversity of healthy people and ALS patients. The principal coordinate analysis, Venn and unweighted pair-group method using arithmetic averages (UPGMA) showed an obvious microbial changes between healthy people (group H) and ALS patients (group A), and the average ratios of Bacteroides, Faecalibacterium, Anaerostipes, Prevotella, Escherichia, and Lachnospira at genus level between ALS patients and healthy people were 0.78, 2.18, 3.41, 0.35, 0.79, and 13.07. Furthermore, the decreased Firmicutes/Bacteroidetes ratio at phylum level using LEfSE (LDA > 4.0), together with the significant increased genus Dorea (harmful microorganisms) and significant reduced genus Oscillibacter, Anaerostipes, Lachnospiraceae (beneficial microorganisms) in ALS patients, indicated that the imbalance in intestinal microflora constitution had a strong association with the pathogenesis of ALS.
https://www.frontiersin.org/articles/10.3389/fmicb.2016.01479/full
Anne
Thanks for sharing this! I had not seen this particular study. The microbiome plays a role in so many conditions and gut health is something I address with all my clients. It should be part of any functional medicine/nutrition work-up and definitely when someone has been diagnosed with ALS.
I’ve been reading info on Dr Klinghardt’s site as I’ve found other protocols for Lyme too confusing and onerous and the herbs too hard to find, import into Australia, etc. Recently I read the doctor’s recommendation about cistus incanus tea taken with stevia leaf and how it helps those with chronic illnesses. Thanks for your site, Trudy.
Frances
Thanks this is new to me as is Dr. Klinghardt’s Lyme protocol. Sharing the link here for other blog readers. https://klinghardtinstitute.com/lyme-disease/dr-klinghardt-biological-lyme-protocol/ Do let us know how you go.
I’d also like to share Darin Ingels’ new book “The Lyme Solution” https://www.everywomanover29.com/blog/the-lyme-solution-by-dr-darin-ingels/ I find his approach and protocols very straight-forward.
Hi Trudy (and everyone else). This is about motor neuron disease and associated autoimmune conditions and/or triggers in my husband’s family: We started with a book called: “Trace Your Genes to Health” by Chris Reading MD.
This guy was ahead of his time, and he was vilified for his approach to treating “untreatable” disease. He sent every new patient home to do a Family Medical Tree – noting all medical issues known in family members, and if deceased, what each person died of. Then he was able to guide them to the specific diet for them. Some of the stories of saved lives are incredible. But I know ours is just as incredible.
When we sat down and made a family medical tree of my husband’s family, we found loads of clues to autoimmune conditions, and this informed us for how we needed to live. There was one cousin who had recently died of motor neuron disease also. There were other medical conditions which Dr Reading said were all in the same family too. Going gluten free was not enough.
We went completely grain free, completely dairy free, and watch for other triggers. Certain food preservatives are a trigger, cultures in cheese are too. EMF hum from Smart Meters is another trigger we have found. We are not in this home forever, so for now we manage the EMF hum in the bedroom end of the house, by playing white noise and bird song and this keeps things calmed down.
We also eat exclusively organic food, which we buy direct from a wholesaler in bulk to be able to buy at much better prices than a retail store.
Another trigger was the spraying of agricultural chemicals (yes Roundup was one) which my husband was required to do for his work. How we handled that one was to completely kit up and be extremely careful about contamination. Yet another trigger was buying French Fries, or hot chips as they are called in the UK, Australia and New Zealand.
These lifestyle changes have enabled my husband to be so much happier, he no longer explodes at the slightest irritation or annoyance, and no longer suffers days after an explosion of being down and depressed. Instead he is a loving kind pussycat. It was HUGE. This took three weeks to start the turnaround. Also has saved one son’s marriage, and explained a lot of uncomfortable family memories of past generations. Others in the family just get extremely tired and spacey from gluten, and even gluten free grains. I believe that if my husband had continued on his trajectory he would have ended up with serious disease.
My question to people is: How many people are walking around, or in hospital, thinking they have serious health issues or indeed psychiatric disorders, when really, the root cause is lifestyle habits which are poisoning them?
Thanks for taking the time to read our experience.
Rofi
This is wonderful to hear and foundational to all health conditions. So happy for you and your family! I’m not familiar with “Trace Your Genes to Health” by Chris Reading MD but it’s great to have this knowledge so you have the reason why and a bigger incentive to change!
Great question: “How many people are walking around, or in hospital, thinking they have serious health issues or indeed psychiatric disorders, when really, the root cause is lifestyle habits which are poisoning them?” – sadly way too many!
My mother died of Motor Neurons, 10 years ago, and as no other member of the family for several known generations ever died of it, it was most unexpected. I’ve considered several factors since. I have Hashimotos, and I believe she had it too, but was never diagnosed, so poss. an auto immune connection. She had all her teeth filled (with amalgum) and capped, about 20 years before the disease began. I believe there is a heavy metal connection. Finally, I don’t believe we are serious enough about head traumas. My mother was thrown off her bicycle at aged 18 and flung through the air, landing on her head. She had a fall onto a concrete flower pot aged 80, breaking a tooth, which required extraction, an arm, requiring pinning, chipped her spine, and bruising her head and face. The disease manifested about 12 months later. (oh, and then their is anaesthetics for those ‘repairs!)
Her diet was always home made,…but loaded with sugar and refined products. …so nutrition wasn’t good, and became worse as the disease interfered with swallowing.
Add to this,, the williingness of every GP back then to load ‘old’ people with antibiotics, pills to sleep and pills for constipation, and you have a cocktail for every gut complaint you can think of!
May be there is not just ‘one thing’, but food for thought.
Jed
I’m sorry for your loss and thank you for sharing. I agree there “is not just ‘one thing'” and these same causes could manifest as Alzheimer’s or MS or cancer in someone else because of our genes. And yes head injuries are very under-rated but clearly have a role to play (https://www.ncbi.nlm.nih.gov/pubmed/26315003) and we know the effects from the CTE research in football players (https://www.ncbi.nlm.nih.gov/pubmed/26260277)
Ketogenic diet and microbiome. GABA mentioned. FYI
https://www.mthfrsupport.com.au/ketogenic-diet-microbiome/
Frances
Thanks – great article…”The higher GABA/glutamate ratio is thought to be one of the major changes occurring in response to eating a ketogenic diet that produces anti-seizure effects.”
I stopped most of my ALS medications due to severe side effects and I started on ALS herbal treatments. The treatment has made a very huge difference for me. My symptoms including weakness, difficulty swallowing and slurred speech disappeared after few months on the treatment. I am getting active again since starting this treatment.
One of the toughest things for my husband, diagnosed four years ago, is the frustration with the loss of function and communication. He recently told me “you don’t understand”. I responded, “you are right,I do not….But I am trying with everything I have”. It is that gap between being a Caretaker and significant other. we started ALS/MND programme 5 months ago, he has regain some functionalities, we noticed his speaking has gotten better since we started on this treatment programme, it didn’t make the ALS go away but it gave him a better quality of life. I also understand that God does not give us more than we can handle…