- Holy potential treatments, Batman! Regarding the progress of ALS research, I have been living in a 1999 time warp.
Almost 3 months ago, I blogged about my mom having ALS; her bulbar onset started in 1995, was diagnosed in 1996, and died in 1999. After I wrote the article, I was curious to see what was new in the world of ALS research and treatment, especially since I had never heard anyone lecture about this disease at any of my medical conferences over the past 2 decades, and I had never seen any patients with ALS in my naturopathic medical career. (However, I was familiar with the disease prior to my mom's illness while working as a nurse in critical care and also while teaching neurological critical care nursing at a local college).
There still is no cure or viable treatment for this horrible disease. This by far and away, is the worst disease on the planet. It is the underdog of underdog diseases. I have seen the gamut of diseases over the past 36 years, in pediatric, adult and geriatric medicine, and far too many of them are heart-wrenching and insurmountable. ALS (amyotrophic lateral sclerosis) is the worst. Now that more and more young people in their teens and twenties are being diagnosed with this disease, ALS is an abomination.
Nonetheless, this is not a blog about gloom and doom. It is about the wonder that exists regarding this disease, and the potential hope for treatment.
ALS (also called Lou Gehrig's disease), is a neurological degenerative disease of the motor neurons in the spinal cord and brainstem. Progressive destruction of these motor neurons leads to complete paralysis, inability to breathe without a ventilator, and the only function that is spared is an active mind trapped inside a body that cannot move except for eye movement. Neurologists dole out a 2-5 year death sentence for the majority of patients, some are granted a 5-10 year stay of execution, and then there are the very few that are slow progressers that live much longer than 10 years.
To give people false hope is cruel. To give people zero hope is even more cruel. To give people false promises for a cure where none yet exists, and prey upon their desperation and financial savings is unconscionable cruelty to the extreme. People with ALS (PALS) often end up depleting their savings in order to provide basic care for themselves.
Way back in 1996 I had very little to go on in trying to find treatment for my mom. I had no computer, and the internet and all of the information that can now be found on it was in its infancy. The only things I found were the useless drug Ritulek, and some Italian study that was using mega doses of Vitamin E. That was it.
Today, there is so much research going on. Underfunded, yes. But much more research than there ever has been. The ALS Therapy Development Institute (ALS TDI) is an organization whose mission is to develop effective therapeutics that slow or stop ALS as soon as possible, for the patients of today. ALS TDI lists the clinical trials from around the world that are ongoing, as well as those that have been completed. Wow. Lots and lots of trials. Researchers have scientifically experimented with an endless parade of drugs during the last 13 years of my time warp: Pioglitazone (a diabetic drug), Thalidomide (a drug for morning sickness that caused birth defects in the late 1950's), Tamoxifen (a breast cancer drug), Growth Hormone, CoEnzyme Q10, Lithium (a drug for bipolar depression), Pramipexole (a useless drug for Parkinson's disease and Restless Leg Syndrome), and the list goes on and on and on and on and on. It's not like hard working research scientists are not giving their all. They sure are.
Unfortunately, many hopeful drugs have come and gone by the wayside, only to foster the roller coaster ride of hope followed by disappointment for so many PALS and their loyal care givers.
Today, however, there appears to be a bit more hope on the horizon than usual. NP001 is a drug that appears to be some type of bioavailable chlorite which quiets the neuro-inflammatory aspect of this disease. It is given intravenously in cycles with follow-up rest periods. It is now being fast tracked for compassionate use (since Phase III trials are not yet completed), and time is something that the majority of PALS don't have a lot of. Please sign this petition to facilitate the compassionate use of this potentially effective drug. However, as with all treatments, time will tell with regards to its use and efficacy.
Other drugs being researched at present include Dexpramipexole (the enantiomer of Pramipexole), Fingolimod (a drug used for multiple sclerosis), and Ceftriaxone (an antibiotic with anti-glutamate, anti-excitotoxic properties).
Stem cell clinical trials are also in progress. On the ALS TDI web page for clinic trials, half way down the page click on 'Stem Cells' to see the bonafide clinics doing this type of research. Other sites like ALS Worldwide caution those PALS who would be so inclined to part with tens of thousands of their dollars to clinics that are less than bonafide. Stem cells are biological cells that can divide and differentiate into specialized cells like neurons so that neuronal regeneration occurs. Stem cells can come from umbilical cord cells, embryonic cells, fetal cells or bone marrow cells. Some treatments require the cells to be surgically transplanted directly into the spinal cord and other treatments involve the injection of cells into the spinal canal. It is far too early to tell if this treatment is going to be a hit.
Even if stem cells end up being a hit, I have to wonder, even if neuro regeneration indeed does occur with extreme success, what happens if the cause of this disease is not addressed? Does the entire neurodegenerative cascade begin again?
What causes ALS?
No one knows. There are lots and lots and lots of theories. There are combinations of theories. Genetics. Bugs. Neurotoxins. Injuries. Emotional trauma. Yada yada yada. Who knows? No cause has yet been found to be conclusive for a disease that starts out a bit differently in each person, progresses a bit differently in each person, and responds to various treatments a bit differently in each person. Certainly, genetics play a role in the 5 - 10% of those PALS that have the familial variant of the disease.
If the root cause of this disease is found to be defective genes in all cases of ALS, both in the sporadic and familial forms, then gene therapy may have some promising answers. However, I have a feeling that this type of therapy will be found in the very distant future. Why? ALS research is underfunded. Other than for a small percentage of even the familial version of the disease (FALS), the genetic defect is unknown. Lastly, the logistical nightmare of creating a type of gene therapy where the treatment would not be fraught with severe side effects remains to be seen. With gene therapy, there may be potential promising treatments in the future, but I'm guessing that it will be a very long and very windy road toward that end. But there's always hope.
On the other hand, I am a big believer in epigenetics. That is, factors other than the blueprint we were born with can affect the expression of our DNA sequencing, both negatively (causative factors) and positively (treatments). There is currently no conclusive epidemiological information that suggests any outside factor as an influence to the development of this disease. However, it's only natural for those afflicted to scan the depths of their histories in order to grasp at some plausible, acceptable reason for having drawn the short straw.
For my mom, like others with ALS, the cause may be a not-yet-diagnosed defective gene as the sole culprit that started the ALS ball rolling.
Regardless, with my belief in epigenetics intact in one hand, and my non-stop curious mind in the other, I wonder if the following had anything to do with triggering that possible defective gene in my mom:
- she sustained a severe neck injury 1 1/2 months prior to the onset of her bulbar symptoms
- she dusted roses for 20 years with an insecticide, wearing no gloves or mask, and likely inhaled the toxin during application
- she ate salad daily, with a dressing that contained large amounts of MSG as the main ingredient, and she did this for years prior to the onset of her illness
- she had 20 mercury amalgam fillings in her mouth
- she was severely estrogen and progesterone deficient for 15 years
- she was extremely ill from measles in her 30s and may have experienced mild encephalitis (from the description of her symptoms)
- she took up running 5 km daily, 5 years before the onset of her disease
- she was physically and emotionally abused as a child
- she experienced bouts of severe depression during PMSD and menopause
When I look at that list, I see some pretty potent neurotoxins. I see possible oxidative damage triggers. And I see a potential initial neuro-vascular assault that may have been the straw that broke the camel's back. But then again, maybe all she did was draw the short straw and none of the above factors contributed to her illness at all. Who knows? Scientists do not know. And neither do I. All we can do is guess.
Dr. David Martz is an MD whose ALS condition was dramatically improved by the use of antibiotic therapy used for Lyme's disease as seen in this study and this article. Some people believe that ALS is linked to chronic Lyme disease, a tick-borne bacterial disease caused by Borrelia burgdorferi. However, ALS Untangled, a watchdog group that investigates off-label and alternative treatments for PALS so that they don't get scammed, believe differently. I think the few lucky ones are those who have been misdiagnosed with ALS, and instead, actually have a Borrelia infection that responds favourably to long-term heavy duty antibiotics. It's a strange coincidence that Steven Hawking, a man who holds the impossible record for longevity with this disease going on 49 years now, had a father who was a Tropical Disease medicine specialist and had worked with an African Borrelia strain capable of causing meningitis.
But there are also other strange coincidences in the world of ALS, like Dr. Rick Olney, a neurological specialist in ALS treatment, who himself developed the disease.
Try as I might, I could only find a few people that were cured of ALS where their symptoms completely reversed. One was a young woman who attributed her Christian faith to her miraculous healing. I couldn't find any information on what had become of her since 2007. Another woman who was older, was cured with multiple energy treatments by a faith healer. Unfortunately, these experiences are not reproducible, and outside observers are only left with 2 possible theories: either these are very rare cases of spontaneous remission and these people happened to draw the long straw among all the short ones, or the potential and possibility for healing is potentially there for all people. I suppose that's what hope is all about. If cure is possible for one person, then it can be possible for a majority of people, even if different avenues for each person need to be traversed in order to find a viable treatment and an openness to a healing response. That's what hope is about, whether it's NP001, stem cells or a spiritual experience.
Then there are other kinds of hopeful, jaw-dropping, and awe-inspiring stories.
A young rising rock star named Jason Becker started experiencing symptoms of ALS at 19 years of age in 1989. Now, no longer able to breathe on his own or move anything except his eyes, Jason continues to create beautiful music.
Another man, Eric Valor, is a brainiac extraordinaire who volunteers his time to help other PALS, he helps raise awareness about ALS, and also helps others to understand the present research that is going on. He too requires a ventilator to breathe, round the clock care, and communicates with this incredible computer technology called eye gaze.
You have got to see this next video clip. The ALS Residence Initiative inspires other non-profit nursing homes to build homes for PALS that provide 24 hour skilled and compassionate care in an environment that supports ventilator care, thereby allowing PALS who choose to live with ALS instead of die of it. Their quotes read: "Life is Good" and "Until medicine proves otherwise, technology IS the cure." Scroll down to the middle video that is entitled, 'Skydiving with ALS and MS' and be amazed. I cried for almost the entire video clip. I didn't know that those kinds of things were possible!! Those PALS have more moxie in their baby fingernail than I will ever have in my entire body during my entire lifetime. Tears of joy overwhelmed me with the thought that surely, anything is possible; even a cure for this complex disease.
It just goes to show you that one size does not fit all when it comes to the idea of 'quality of life'.
I sometimes wonder how I can contribute to this cause. Donating to the above links, be it research, an ALS society, or a person with ALS, is one proactive way.
At other times like today (which happens to be the 13th anniversary of my mom's death), with what I know about health and healing today, I contemplate what it is that I would do now if I found myself or a loved one drawing the short straw.
Hmmmmmmmm . . . .