Warren Osborn’s ALS Journey

By Warren Osborn

Many friends and people with ALS have asked me to post my ALS thesis and more details about my journey.

My muscles began fasciculating in late November of 2017, starting in my left arm in the tricep and over a few weeks the twitches spread to most of my left upper body. Over a two-month time period the fasciculations spread to my right upper body and then to my lower body. I was literally constantly quivering/twitching all over my body, with no control of such. I self diagnosed that it was likely ALS (40% chance was my prediction) in late January 2018. After seeing a neurologist and having an EMG and then seeing an ALS specialist and having a second EMG, I was officially diagnosed with ALS on May 10, 2018. Other symptoms such as cramps, muscle spasticity, and muscle atrophy in the left tricep had been going on for two to three years prior to November 2017. However, these prior symptoms were progressing so slow that I never considered ALS as a possibility. But after November of 2017, when the fasciculations started, the progression began to move very quickly.

My ALS doctor at the University of Utah, ALS Clinic, suggested that if I am a typical 53-year-old with ALS, I would likely have two to four years to live from the date of the first symptoms. I was also told that I had an ALS subtype called Progressive Muscle Atrophy (PMA), which results from lower motor neuron death. ALS begins with various motor neuron deaths, but the end is always the same—death of all motor neurons and ultimate loss of control of all muscles including voice, swallowing, and  breathing, but the person still feels all the itches, pains, cramps and such. This was a horrific shock to be told this.

One ALS doctor said to me, “You hit the jackpot. This is the worst diagnosis a doctor can give a person.” This statement, while callous in its lightheartedness, I think is factually accurate.

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig’s disease, is a disease which causes the death of neurons controlling voluntary muscles. ALS is characterized by stiff muscles, muscle twitching, and worsening weakness due to muscles decreasing in size.

The cause is not known in 90% to 95% of cases. The remaining 5–10% of cases are inherited from a person’s parents (called Familial ALS). About half of these genetic cases are due to a few specific genes. The underlying mechanism involves damage to both upper and lower motor neurons.

There is no known cure for ALS. A medication called Riluzole may extend life by about two to three months. Non-invasive ventilation may result in both improved quality and length of life. The disease can affect people of any age, but usually starts around the age of 60 and in inherited cases around the age of 50. The average survival from onset to death is two to four years. Most die from respiratory failure (Wikipedia).

Prior to being diagnosed with ALS, I was researching and reading about ALS and other autoimmune diseases. I quickly learned that stem cell treatments held the most promising hope for arresting or even reversing ALS. So at the time I was diagnosed, I asked my ALS doctor his thoughts on stem cell treatments. He responded, “There’s not a shred of evidence that stem cells work. Don’t waste your precious time and money on that” (nor on any other alternative treatments). Not “proven” to cure ALS would have been a more accurate statement. I understand that he may have been trying to get me to face the fact that I have ALS and to prepare my affairs for my ominous future. However, I very much disagreed with his statement. The clinical trials and studies that I had read were compelling to me and I felt that there was a lot of hope with stem cells to at least slow autoimmune disorders, including ALS. I was already a very determined and driven serial entrepreneur. My new health reality, coupled with his statement, lit a fire in me to take my ALS health journey and medical research and treatments into my own hands. I was not going to do simply sit and wait to slowly die, like so many do..

The science, studies, and clinical trials with stem cells demonstrated significant benefit to people with autoimmune diseases. Frankly, I was extremely confident that there are many things I could do to live longer and to at least slow the progression of my ALS. There have been 40 documented and certified ALS reversals to date. The neurology medical world largely focuses on the genes, which are a foundational part of this illness. However, the scientific data is compelling that environmental factors such as stress, toxins, lifestyle, immunizations, bacteria, protozoa, and other factors are influencing, triggering, and/or exacerbating ALS.

Within 24 hours of being diagnosed, I booked a flight to Florida to receive my first stem cells. Five days after being diagnosed, I flew to Florida and had my first stem cell treatment—5 million umbilical cord stem cells injected intrathecally via a lumbar puncture. I also did five sessions of hyperbaric oxygen treatments that week.

I made it my mission to intensely and profusely read ALS clinical trials, studies, and research, as well as study protocols and learnings from ALS patients who had slowed the disease (and the 40 who had reversed it). I read clinical trials and research about other autoimmune disorders and gathered transferable learnings from such. I also began developing a protocol of supplements and a treatment plan. Note, however, that I am not a doctor, scientist, nor a chemist, and I have not been medically trained in any way. But I know how to source and improve on existing processes and products. That is what I’ve done in founding and building 10 successful companies—I source and improve on the status quo of the product or process that I’ve gone after. I make it better, and I do so faster and with more intensity, drive and focus than the competition. I began doing a similar process with my ALS, improving my ALS condition, and seeking a cure. ALS, effectively became my new business. Every single day, even on weekends, I studied, researched, and self-treated. Over the first seven months after my official diagnosis, I read more than 27,000 pages of research. My goal was to cure my ALS and if I failed at a cure, to live 20+ years instead of 1½ to 3½ years.

My ALS Disease Theory

ALS has many contributors, ignitors, and enhancers. First, a metaphor: Imagine your DNA to be akin to a suspension bridge. My DNA may have only two cables on one side, like the bridge (Golden Gate) on the left above. Yours may have many cables like the bridge on the left below. When “stressors” weaken or break one of my cables, the bridge begins to collapse. With yours, you have some backup cables and thus the same damage/stressors do not collapse your bridge because of the redundancy in cables. ALS genetic weakness is akin to this metaphor and genes surely play a role. However, environmental factors also play a role. And much of the ALS medical community is not adequately addressing the environmental and other factors – many are focusing almost solely on gene research and tracking statistics.  

Below are a few of these environmental “stressors” that have been demonstrated to spark, ignite, enhance, or contribute to ALS/MND. There is likely not one singular “cause.” However, the data is compelling that the following likely contribute to ALS progression because of the high correlation with the disease. Correlation does not equate to causation, but when correlation occurs over and over consistently around the world, we should pay attention.

1. BMAA neurotoxin in Blue Green Algae
2. Heavy metal toxins in our system such as mercury and aluminum  
3. Glyphosate (Roundup Pesticide)
4. High quantities of vaccinations
5. Head trauma, especially concussions
6. Neck trauma
7. Going to war
8. Go, go, go, Type A personality types (highly driven people)
9. Physically active and fit people
10. Inflammation caused by diet
11. Lyme disease
12. Bartonella, Babesia, Protomyxzoa (Frye Labs), protozoa, and other infections
    

Not surprisingly, I fit all of these excluding going to “traditional’ war and I likely haven’t had Lyme Disease. I don’t know yet on protomyxzoa. I have lived a highly stressful lifestyle of founding and running eleven companies which is a kind of “war.” So I fit the perfect storm. My theory and rationale to combat this disease was as follows:

1. Remove or reduce every one of these enhancers, triggers, and exacerbating environmental factors as much as possible.
2. Give my body all the nutrients/supplements needed to optimize health and to bring about homeostasis.
3. Go aggressive on stem cell treatments, both autologous (my own) and umbilical cord, to help regrow, repair, and rebuild.

In March of 2014, I was in a skiing accident where I broke my collarbone and had fifteen rib breaks. This was followed with four surgeries on my collarbone. I believe that my ALS likely started very slowly soon after this. I believe that in 2017, with super high work stress, other stresses, and many immunizations (six to eight), given to me all at one time in May of 2017, may have caused my slow moving ALS to start moving more quickly and aggressively in late 2017 through May 2018. These are just theories, not fact. Of course, all of these factors do build on overall weaknesses or defects in genes such as the C9ORF72, SOD1, NEK1, TDP43, FUS, UBQLN2 (note that these genetic weaknesses are more associated with familial ALS rather than sporadic).

Disease Progression

Between January 2018 and July 2018, I lost between 10% and 33% of my upper body strength (depending on the muscle group), as measured by my consistent weight lifting program at the gym, which I have done regularly for many years. I also atrophied a lot in my left tricep and left forearm and some in the right tricep and I lost some hand grip strength (estimated at 15% loss). I have not yet lost any material function.

Wrecking Ball Analogy

Switching analogies, imagine one’s DNA to be like a skyscraper with a wrecking ball hitting it.

In the beginning, the wrecking ball is pounding into the side of the building, breaking only the siding. As the pounding grows more intense, it begins to destroy the core structure of the building. I theorized that if stem cells are applied, they may repair, build, grow, and encourage other cells in the body to grow and repair. But I was confident that the wrecking ball would remain, and if not removed, reduced or slowed down, then the destruction would continue. Thus I believed, in addition to stem cells, I needed to work on shrinking the power of the wrecking ball. All the factors listed above that might have contributed to the trigger, onset, and progression of my ALS needed to be addressed. Thus I changed my diet to Vegan, little to no sugar, no dairy, low carbs, and very high amounts of organic fruits and vegetables. I did many detoxing protocols. I removed or reduced most of my mental stress. I had a lot of blood work done and checked for parasites, bacteria, and protozoa. I added many daily supplements to give my body all the support and tools it needs to help repair the metaphorical building and combat the ALS wrecking ball. My theory is that all of these things will shrink and/or slow the ALS wrecking ball.

I learned from those who have gone before, including from clinical trials not yet approved as drugs, yet showing positive results. I learned from ALS patients who lived dramatically longer than others. I borrowed learnings from other ALS patients who experienced reversals. And I tried to improve upon clinical trials that showed benefit. After all, I could make decisions for myself in hours (compared to many years or decades for clinical trial approvals) as I was my own researcher, prescriber, financier, as well as the guinea pig. Given that I was told I had 1½ to 3½ years to live, I was willing to take more risk than normal. I immediately started taking supplements that were herb-based, and which showed some hope of benefit. With other supplements or drugs, I would run them by at least one doctor and a neurologist to ensure that there were no material chemical, toxic, or interactive risks. My supplement list grew to over 60 pills, oils, and powders—taken both morning and evening. All of this was based on my studies of some 27,000 plus pages of research.

For awhile, it was thought that I might have Lyme Disease and Babesia, in addition to ALS/MND. A friend introduced me to the leading Utah Lyme and infectious disease doctor, Andrew Petersen. He suggested Ozone IV, Vitamin IV, and IV antibiotics, which I did at his clinic. Later, blood work came back suggesting that I likely did not have Lyme. I then ceased the IV antibiotics but I continued with the IV Vitamins and Ozone. Note, as mentioned previously, that there is much evidence that many ALS patients have Lyme, Bartonella and various protozoa and that ALS may be ignited/sparked or exacerbated by such. Additional blood tests in December of 2018 suggest that I do have Bartonella and/or Babesia so I have continued to treat for such.

Protocol

In addition to my 60+ supplements taken twice daily, my therapies included (and still include) the following (each done regularly):

• Stem cell protocol (detailed in Stem Cell section below)
• Ozone steam therapy for detoxing
• Ozone IV therapy for detoxing
• Hyperbaric oxygen, typically at 3X atmosphere
• Super Immune vitamin IV therapy
• UV light IV therapy
• Advanced PK IV protocol
• Multiple supplements for detoxing
• Acupuncture
• Regular massage
• Using steam to detox through sweating
• Removal of four metal crowns from teeth to remove traces of heavy metal toxins
• Traditional Chinese medicine using various Chinese herbs
• Stress reduction in life. I ceased running a company and ceased investing in new ventures.
• Diet: Vegan. No milk, cheese, or dairy. Little to no sugar. Low carbs and grains. Low fat. Very high vegetables and fruits. No processed foods.
• Regular weight lifting exercise of about 60 minutes per day, five days per week. Three hours of cardio weekly.
• Very positive attitude and a belief that I can beat ALS! Placebo does work. Our brain’s belief accounts for a very large portion of improvement in anything. Recent studies suggest that placebo may account for 50% of a drug’s efficacy. Belief is a massive part of the equation.

Autologous (meaning one’s own) Stem Cells

There is a lot of research going on with stem cells. It is largely unproven as to what works and exactly how it works. But there is plenty of data suggesting benefits with autoimmune disorders, including ALS. The most persuasive (with positive short term outcomes) clinical trials for ALS used autologous stem cells, injected intrathecally (lumbar puncture). In some trials, the majority of participants had at least short term partial paralysis reversal. In one phase II clinical trial, 36 ALS patients received autologous stem cells and experienced at least short term paralysis reversal. I did not qualify for their phase III clinical trial due to my already having had stem cells. And I also did not want a 50/50 chance of placebo. So I embarked on learning from their clinical trial and from multiple other trials. And I learned from stem cell experts and have tried to improve upon these trials where I could.

I researched more than twenty stem cell clinics around the world. Prior to choosing one, my functional medicine doctor referred me to a stem cell expert. He is not an ALS specialist but he is a world class stem cell expert. We discussed how we could improve on the clinical trials and reach the brain from two modalities, rather than only one (spinal fluid injection). He suggested running a catheter from the arm to the carotid artery. There was some increased stroke risk with this, but this would give the brain a high dose of autologous stem cells through the blood system in addition to the lumbar puncture/spine system. Thus a 1-2 punch. He recommended a stem cell clinic in Guadalajara and after researching further, I ended up choosing that clinic (Sential) over the other twenty.

I am mimicking and improving on the process of multiple other clinical trials where I can. The clinical trials that I tried to learn from extracted autologous stem cells from one’s bone marrow. Some trials also differentiated the stem cells into neuro specialists, removing the other stem cells. We don’t know how they do this. They then grow only those—the neuro specialists. Then they inject those stem cells intrathecally, through a lumbar puncture, three to four times over a year. Again, I cannot replicate the differentiation process at present. So my strategy was as follows:

• Do more stem cells to compensate for the lack of differentiation. I inject 50M to 60M per intrathecal injection via a lumbar puncture.
• More frequency. They do this quarterly. I did it monthly for four consecutive months, then moved to every other month.
• They injected only into the spinal system. I had 150 million stem cells also injected via the blood system, through the catheter running to the carotid artery. Thus my brain received the stem cells through the blood system as well as the spinal system. After the second treatment, I was noticing significant improvement in regaining muscle strength and in reduced muscle cramps. After my short term ALS reversal, and with the encouragement of an ALS doctor and an ALS researcher, I curtailed the carotid artery injection and replaced the same with an IV injection (which is much safer, but does not reach the brain nearly as well). However, if I decline in the future, I will return to the carotid artery injection.
• Umbilical cord stem cells. On the third and fourth treatments, I added 200 million umbilical cord stem cells to my regime by IV, coupled with autologous stem cells through the lumbar puncture.
• Umbilical cord stem cells injected into my atrophied left tricep.

My belief is these additions to existing clinical trials have given me a much higher chance of slowing down or stopping my ALS progression and also healing my motor neurons.

Additionally, in between my autologous stem cell treatments, I had another stem cell facility in Utah do 13 injections of approximately 3.5 million umbilical cord stem cells and 30 million growth cells per cc in each of thirteen cc’s as follows:

• First session: 1cc in the nasal cavity; 2.5cc’s C-Spine (4/5, 5/6, 6/7). 1.5cc in the left hip (this later item was for hip pain, not ALS)
• Second session: 1cc in the nasal cavity; 2cc’s by IV

• Third session: 2ccs upper back (C7-T2); 2cc’s by IV; 1cc left shoulder (for joint pain, not for ALS)

After the stem cell protocol and all the other treatments and supplements in my protocol, between July and October, 2018 my upper body strength improved considerably, rather than degrade. During this time, my weight lifting strength at the gym fully returned. And by the end of October I was lifting the same level of weights (or more) than I was when the fasciculations began in November of 2017. I had regained all the muscle strength that I had lost (10% to 33% in the upper body) in my standard weight lifting exercises. I still have considerable atrophy in my left tricep. And that single muscle has not fully recovered yet. Even my hand grip strength has returned. Traditional ALS medicine suggests that muscle strength recovery is not supposed to be possible with ALS. Progression of motor neuron loss is also supposed to be constant in ALS.

In late October, I met twice with Dr. Richard Bedlack of Duke University. Dr. Bedlack is a top ALS alternative treatment researcher and doctor in the United States. He noted that is very, very rare to have such an improvement in muscle strength. He thus questioned whether I actually had ALS. At our first visit, he thought it possible that I might have something else, such as MMN (Multifocal Motor Neuropathy) or BFS (Benign Fasciculation Syndrome). So he did another EMG to disprove or confirm the ALS diagnosis.

A couple of days later we had a video call and he confirmed that I do have ALS/ Motor Neuron Disease (with large death of motor neurons). However, in each of the same four muscles/nerves that were tested 5 months prior with the EMG and retested by Dr. Bedlack, things had improved (reversed in severity) rather than progressed in degradation. Again, this is not supposed to be possible with ALS, but it happened with me.

There have been 40 cases of confirmed ALS reversals. Dr. Bedlack thinks I could possibly be #41 and that I could be experiencing an ALS reversal. Something, or a combination of things more likely, in my extensive regime could be curing me or least stopping the progression of my ALS. Dr. Bedlack said that perhaps “you stumbled onto a cure.” Also, it could just be random—I could have gotten lucky and for some reason it stopped. Luck is not very likely. The regimen/protocol is very likely causing my outcome. Dr. Bedlack said that he has never seen this large and aggressive of a protocol with any patient or anyone whom he has studied.

Due to this amazing improvement, I have, as I mentioned previously, cut out the carotid artery stem cell injections (which is risky—risk of stroke, etc.). Why am I continuing with stem cell and other treatments? Because my ALS may not be fully stopped yet. I still have fasciculations and cramps and some muscle atrophy. It is possible that my motor neuron death has fully stopped or it may just have slowed down considerably. It could resume. We just don’t know. The reversal that I’ve experienced could be short lived and things could continue to progress downward again. Thus, I will continue my protocol and very slowly wean myself off of a few of the treatments, one at a time. But I’ll continue to eat healthy, live very healthy, and proceed with my protocol—to avoid the risk of progression starting again. Due to my current reversal, I’m now treating every 60 days with stem cells. If I continue to improve, I’ll move to every 90 days, etc. If the ALS progresses in any way, I’ll revert to every 30 days for stem cell treatments.

I’m not fully out of the woods here. My protocol could have simply moved things to an extremely slow progression with a short term transient reversal. However, the November 2018 EMG demonstrated significant improvement on all 4 muscles/nerves as compared to the two EMGs done five months prior. That is huge and is not supposed to be possible by traditional medical standards. My family and I are overwhelmed and excited with this news.

Note, however, that no two ALS patients are the same. Every one of us has unique DNA and ALS strikes every patient differently. Hopefully we can learn from this protocol and it can help others.

In summary, I do not believe that only ONE thing is likely going to cure my ALS or the ALS of others. The FDA and big pharma double blind study method may likely be flawed in its premise in this case. Sure, there is huge benefit to figure out which single item is providing the benefit, and thus a double blind method along with isolation of the one thing makes a lot of sense. But I believe that with my ALS, a holistic collection and application of many things is key. Getting the body and mind into homeostasis, detoxing, healthy diet, positive attitude, and stem cells, all combined may bring about the slowing of the progression and aide in the cure for ALS.

I want to thank everyone who has helped me. So many people have offered input, advise, learnings,suggestions, etc. So many doctors and researchers and clinicians have been very helpful. And many other people with ALS have given great advice. I’ve simply gathered all the learnings from all the research, studies, and clinical trials, and coupled such with learnings from related autoimmune disorders, plus applied good health practice, and developed a regime/protocol that is working. I hope this regime/protocol can and will help other people with this insidious disease.