Carol’s ALS Journey

My ALS Story:  By Carol Jensen

Editor’s note: Carol is the only ALS reversal we feature without an “official” diagnosis. Carol was given a verbal diagnosis of ALS in 2005 by both a local neurologist and an ALS specialist. Her treating doctor when we interviewed her is sure she has ALS. We believe the only reason Carol was never given a definitive diagnosis of ALS is that she never let her ALS symptoms worsen to the point where the neurologist could definitively confirm it. If she varies too far from her program her very clear ALS symptoms slowly return. Many have told us a similar story. Their neurologist will not confirm their diagnosis until their symptoms worsen and finally a year or 18 months later they are finally diagnosed. Carol decided not to wait.

My name is Carol Jensen.  I am 64 years old (today is June 21, 2020). I am a wife and mother of two sons.  Do I have ALS?  I’ll let you decide.  This written record tells how I stopped the progression of worsening neurological symptoms resembling ALS with a lot of hard work and a lot of help from others.  I have put my story in writing to make sure I don’t leave anything out. It is my sincere hope that others will benefit from my experience.

The symptom that first sent me to the doctor in mid-July, 2004, was pain in my right hand and arm.  My right forearm began cramping intermittently throughout the day and night.  I had to take pain medicine at regular intervals to sleep for a few hours.  After a few days, fingers 3-5 began to curl up like a claw and I couldn’t straighten them. My hand began to hurt worse and worse.  I went to the chiropractor, who couldn’t help me.  I went to our family physician, a naturopath, who gave me an IV with magnesium sulfate to try to relax the muscle spasm.  It didn’t work.  He did a grip strength test and it was normal.

The muscles finally relaxed and most of the pain was gone.  I could straighten the fingers.  However, over a two week period, the muscles in my right hand shrank visibly.  Most dramatically affected was the muscle in the web between my thumb and forefinger.  I am right handed but now the right hand began to look significantly less muscled than the left hand.  I could still use the hand, but differently.  Swimming was suddenly difficult because the fingers were too weak on the right hand to form a “paddle” and pull water.  My ND sent me to a neurologist.

The neurologist found unexplained unbalanced muscle weakness in the legs.  My problem was not just my arm.  He also did a nerve conduction velocity test.  He poked my left hand with a needle attached to a gauge which showed a needle jumping in response to muscles twitching in my palm.

 He ordered X-rays of my neck, a CT myelogram and an MRI.  Only minor spinal stenosis was evident in the region controlling the hands.  Still the neurologist sent me for a surgical consult.  The neurosurgeon saw my shaking tongue, checked for Babinski’s sign (I didn’t have it), and irritatedly told the first neurologist that I was not a surgical candidate.  I was referred to an ALS specialist at OHSU, Portland, Oregon.

The ALS specialist examined me in February, 2005.  He found reduced nerve conduction velocity, improperly balance muscle strength.  He witnessed the fasciculations.  He asked me to come back when there was something I used to be able to do that I could no longer do (i.e., when I was disabled).  He thought based on the exam and interview, that there would be enough disease progression in three months that I might be easier to diagnose.   Apparently, ALS and related neurodegenerative diseases aren’t officially diagnosed until disability is more pronounced.  That’s a terrible price to pay for a diagnosis.  I had muscle spasms, fasciculations, and muscle wasting, and weight loss.  My breathing felt unnatural and a little forced.  My voice was weaker than it used to be and my tongue was shaking.  I had widespread motor deficit but no sensory symptoms (no numbness, tingling or pain, except if a muscle cramped).  My shoulders, hands, feet and face all had visibly less muscle than even six months earlier.  This was enough to convince me that for purposes of research and treatment I should assume the worst case: ALS.  My naturopath also believes I have ALS.   Together we ruled out MS and Lyme Disease.  It appeared to me that ALS fit my symptoms.  Delayed intervention could cause permanent impairment.

I asked the ALS specialist if I was likely to have any condition he could actually treat or correct.  He said “no”.  At this point, I said that I would rather spend my time and money getting well rather than spending money on more tests while allowing the disease to progress and irreversibly rob me of motor neurons.  To his credit, he did mention that creatine supplementation had been found helpful in slowing the progression of ALS.  I thanked him and went home.

As one of Jehovah’s Witnesses, my faith profoundly affects my daily life and decisions.  On this account I prayed for the wisdom to recognize a solution to stop or reverse ALS and the self-control to act on it. Then I got busy researching on the internet.  Most websites sold supplements to help with symptoms or slow the progression of ALS.  But one website stood out as a beacon of hope for permanently arresting ALS and even reversing it to an extent.  That website was:  ericiswinning.com.  There I found someone (Eric Edney) who had stopped and partially reversed his ALS and was willing to share his protocol online for free.  He also had an inexpensive book (Eric is Winning) with more details.  I bought it and read it… twice.

All the conventional medical literature I had read basically said, in effect:  “Put your affairs in order and expect to die 2-5 years from diagnosis.  Expect to spend your last years trapped in a motionless body being mechanically ventilated and tube fed.”  What did Eric Edney say?  You can get well.  Detoxify and avoid toxins.  Optimize your nutritional status.  Keep a positive mental attitude.  The body can heal itself if you remove the obstacles. 

Eric’s protocol is well-researched, science-based, practical and effective.  Eric Edney used himself as a guinea pig to determine if treatments helped his ALS.  Until his death (from natural causes, not ALS) he posted updates nearly every month as he continued to learn and try new things.  I believe that his website is the reason I am able-bodied today.

So, what did I finally do?

I began with weekly colon hydrotherapy to aid in detoxification.  I went to the recommended resource websites in Eric’s book and found a dentist who could do complete dental revision.  For me that meant having two root-canaled teeth removed (and later an adjacent molar that died).  I also had all amalgam (50% mercury) fillings and metal crowns removed.  The dentist replaced these with safer composite crowns and bridgework.  I had cavitation surgery to remove osteonecrosis in the jawbone.  The one-month whirlwind of surgeries and restorations was a time of rapid healing for me.  My symptoms were significantly reduced during that time.

I switched to a whole-food diet, vegan at first.  I gradually added back a little organic meat and dairy.  I quickly transitioned to a 100% organic diet.  For a while I did clay detox baths.  Later I did three conventional sauna treatments per week.  I began IV EDTA chelation to remove neurotoxic metals like lead, mercury, aluminum, arsenic, and cadmium from my system.  To protect my motor neurons from toxic metals being released into my bloodstream by the chelation, I followed the chelation with a sauna visit and I ate cilantro and chlorella to aid in toxic metal removal.  The next day, I took oral minerals to block reabsorption of loosened toxic metals, had an IV “push” of “Myer’s Cocktail” (vitamin C, B vitamins, magnesium and calcium and assorted minerals) with 1400mg of glutathione.  I also did colon hydrotherapy the day after IV chelation to remove any toxic metals dumped into the colon following chelation.  Several days later, I did another “Myer’s Cocktail” with glutathione.  After about a year of chelation, I settled into a routine of Myer’s Cocktail with 1400mg glutathione three times per week by IV “push”.  This is part of Dr. David Perlmutter’s ALS protocol.  Eric Edney did chelation, but never did long term glutathione “pushes”.  It really helped me but they are expensive and may not be necessary for everyone.

In January 2007 I did 40 hyperbaric oxygen treatments in a small, 1.3 atmosphere chamber supplied with 95% oxygen from an oxygen concentrator.  I experienced improved swallowing and my tongue got out of the way of my teeth better when I spoke.  These improvements lasted for years afterward.  I currently have occasional problems swallowing because of what appear to be esophageal spasms.  Thaey can last from two minutes to two hours.  I’m not losing any weight over it.

What do I eat?  For four and a half years I thrived on an all organic whole food omnivore diet.  At that time I ate some roasted chicken and vegetables, occasional small amounts of lamb and free range buffalo or beef, lentil soup, cooked eggs, and organic cheese.   My salads, smoothies, fruits and nuts and seeds were all raw.   Because of Eric Edney’s negative experiences with adding fish to his diet, I never eat fish.  Apparently fish don’t detoxifiy their own bodies very well and accumulate toxins in their flesh.  The mercury they store is especially dangerous for ALS patients.  Today, I eat all raw, organic whole foods.  Specifically I eat raw fruits, vegetables, leafy greens (lots of them-and cilantro every day), kelp, sprouts, nuts, seeds, and fermented raw cabbage and vegetables (Kimchi).  For eight months I ate vegan to accelerate detoxification.  I later added raw, pasture-fed eggs and raw A2 milk from pasture fed cows and raw goat milk to my diet.  I ferment the raw milk and eat kefir every day.  I’ve been eating all raw since July 12, 2009!

Regarding milk:  The raw, whole, unpasteurized, unhomogenized, pasture-fed A2 milk that I ferment into kefir should not be confused with the milk you can buy in the grocery store.  In Oregon you can only buy raw A2 milk directly from a farm.  Also, the casein in A2 milk (as is common in Jersey cows) is chemically different from the more common A1 milk (as is common in Holstein cows). A2 milk casein is supposed to metabolize differently from A1, not contributing to immune or neurological problems. http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/a2-milk

Why did I go raw?  I got the idea when Eric and Glenna published their experience going to the Optimum Health Institute in San Diego, where they serve all raw organic meals to their health-seeking visitors.  After researching the raw diet at length, I learned that raw food has incredible healing power and that many terminal, hopeless patients have recovered by going 100% raw.   I thought it would be beneficial to add the raw diet to my many healing tools.  For the record, Eric thrived on an organic, omnivorous diet.  Most successful recoveries seem to be achieved without resorting to 100% raw and most people find all raw challenging.  I also thrived and healed on an organic, omnivorous diet (albeit high raw, and low animal).  I do notice fewer digestive problems and less stiffness on the 100% raw diet. 

Some have asked:  “Don’t you get bored with your diet or crave foods that other people are eating?  I almost never experience cravings.  I eat a very wide range of delicious, satisfying foods and enjoy them very much.  Raw organic food has so much more flavor than its conventional cooked counterparts.  Having organic, homemade kefir, kimchi and kombucha has really made my meals a pleasure.  I make my own kimchi with raw Napa cabbage, garlic, kochukaru pepper, and brine made from water and Himalayan sea salt.

What supplements do I take?  Wouldn’t it be nice if there were some “magic bullet” pill that would “cure” ALS and related neurodegenerative diseases?  There isn’t. I don’t believe that any supplements can stop ALS without a consistent commitment to detoxing the body, following a non-toxic diet, and avoiding toxins in your environment. Other disorders may be more forgiving of dietary and environmental indiscretions, but once your immune system begins attacking your motor neurons, it’s like a dog with a bone.  I believe that with ALS there is no “wiggle-room”.  You need to be aggressive and consistent with toxin removal and toxin avoidance. 

I do, however, take supplements to help protect my nerves and aid with detoxification:

Chlorella

DHA

Ubiquinol

Multivitamin and mineral supplement

R- Lipoic Acid

Vitamin D3

Iodine

L-tyrosine

ASEA (stabilized redox signaling molecules only available through network marketing at this time)

Ambrotose (a glyconutrient supplement available from Mannatech through network marketing only)

[Although I distribute these two products, I am choosing not to solicit business while sharing my story because there are always detractors who look for fault in those who share their natural healing stories, criticizing them for seeking profit at the expense of desperate people.  I have never taken a cent from anyone who asked what I was doing to stay well.]

Bio-identical hormones: DHEA, Bi-Estrogen, Progesterone, and Nature Throid thyroid.

I was diagnosed with pernicious anemia in 1999 and until 2015 I gave myself preservative-free B12 shots.  My current naturopath believes I no longer need the shots. We’ll see!

Today in 2020, I have my IV “push” of 2000 mg glutathione just once a week and seem to still be doing okay.  Currently I also do  the “Myer’s Cocktail” once per week. My veins are harder to stick and get a good push after many years of 2-3 IVs a week.

I currently exercise with short walks and bicycle rides.  I also use a TurboSonic (now SonicLife) machine for daily vibration therapy.

My lifestyle isn’t cheap or easy, but it has resulted in symptom improvement rather than deterioration.  I decided ten years ago to act quickly and decisively rather than risk being bedridden and on a respirator wishing I had acted before I was disabled.  To me it has been worth giving up the pleasure and convenience of eating and living like everyone else.  I am very fortunate to have an understanding and supportive husband who believes in me and thinks I’m worth saving.  Without his financial and emotional support, I would not be where I am today.  Are you listening, spouses of ALS patients?  Thank-you, Jerry, I love you!

How am I doing?  Today is June 21, 2020.  I believe I have stabilized my condition and even improved over my worst symptoms.  My tongue quit shaking long ago.  I have very infrequent mild hand or toe cramping.  The fasciculations in my legs are rare and short-lived.  Sometimes I can’t swallow for a short spell but I’m not losing any weight or sleep over it.  I breathe adequately, even at night.  My husband and I still take brief walks and bike rides and do regular stretching. My speaking voice is reasonably strong and clear.  I still talk, whistle and sing; though these functions are weaker than they were 15 years ago.

What about the ALS specialists?  Although I appreciate their work and compassion, I haven’t wanted to spend the money and time to go back.  The tests are expensive, painful, and invasive.  I don’t need them to know I’m doing better and am doing the right thing. 

At my husband’s request and the recommendation of the leader of a local ALS support group, I finally went to a specialist on July 2, 2013.  This visit occurred eight and a half years after seeing the last ALS specialist.  After a brief interview and exam, she said that her neurological screening doesn’t reveal signs of ALS.  I do still have fasciculations in my right leg and left shoulder from time to time, but they didn’t show up during her brief test.

The doctor thought that perhaps I had something called Parsonage-Turner Syndrome, also known as brachial plexopathy.  After reading up on the condition I am convinced that I don’t have it.  My shoulder pain was not severe or constant.  I didn’t have persistent pain but mild, positional discomfort when I used certain muscles in the shoulder.  I also didn’t have dysthesia or numbness.  Likewise, the brachial plexus does not supply signals to the legs, to my knowledge.  I have had muscle wasting and spasms in the legs and feet.  PTS also wouldn’t affect my breathing, voice or swallowing.  In the doctor’s defense, her time with me was limited and I should have prepared a written brief to make sure I explained my history of symptoms better.  Oh well!  I give her credit for being familiar with ericiswinning.com and speaking well of his program.  She herself eats an organic vegan diet.  No ALS for her!

Thanks for taking the time to read this,

Carol Jensen 

P.S.: 

Many people have asked:  Why aren’t most people getting well with ALS even though protocols like Eric Edney’s are available on the internet and in books?  I’ll venture an educated guess:

1)  Most don’t ever hear about it.

2)  Their doctors say “nothing can be done”.

3)  They or their loved ones believe nothing can be done.

4)  They apply only enough of the program to fail and not enough to get well. 

The evidence seems to suggest that for most people, nothing short of a “pit bull” approach to detoxification, nutrition and cellular energy therapies stabilizes or reverses ALS.  ALS appears to be unforgiving of toxin exposure, even after you think you’ve done plenty of detox.  It is possible that a successful ALS patient needs to adopt a permanently non-toxic lifestyle.  Don’t worry!  You can still have fun without poisoning yourself. 

Eric Edney died January 3, 2015 at the age of 85 from a heart attack after successfully stabilizing and partially reversing his ALS of about 25 years duration.  I highly recommend reading Eric Edney’s website, which is back up and running, despite a brief hiatus following his death.  If you don’t already have it, I recommend trying to get his book,  Eric Is Winning, on Amazon while it’s still available.

Although I highly recommend you read his book and protocol outline and updates at the website, ericiswinning.com, I will here  attempt to reconstruct what I remember of   Eric Edney’s protocol.  

Eric was convinced that toxins are what provoke the body to destroy its own motor neurons.  He tested his recommendations on his own body and raved when he got good results.  He never stopped researching, trying things, and sharing what he learned with others fighting neurodegenerative diseases.  Here’s what I recollect from years of following his posts:

Detoxify:

    Full dental revision by qualified biological dentist trained in the Huggins protocol

    IV chelation to remove toxic metals

    Hot baths with therapeutic detoxing clay

    Far infrared sauna  

Toxin Avoidance:

    100% organic, whole food diet

    Only safe cleaners for body and home

    Avoid exposure to toxins offgassing from new electronics

    Don’t take pharmaceuticals because they are toxic

Optimize the nutritional status of the body so it can fight back:

    %100 whole, organic foods

    Organic superfood supplements

    Non-toxic nutritional supplements

    Glyconutritional supplements (like Mannatech’s Ambrotose)

    As much food raw as possible

Rid the body of the Lyme organism and its co-infections:

    Colloidal silver

    Food grade hydrogen peroxide in distilled water, according to The One Minute Cure

Keep the body’s pH in the high-normal range:

    Alkalizing diet

    Alkalizing mineral supplements

Oxygenate the blood:

    Oral consumption of food grade hydrogen peroxide in distilled water according to      instructions in the book, “The One Minute Cure”                                                                          Oral consumption of Ozonated water

Positive Mental Attitude:

    Eric profoundly believed that attitude was crucial to healing the body of ALS or any disorder.

 I like the way the Bible expresses a similar thought:

“A joyful heart is good medicine, but a crushed spirit saps one’s strength.” —Proverbs 17:22

Over the last six years, Patricia Tamowski of Healing Advocates has made contact with ALS survivors who have achieved various degrees of stabilization and improvement using a fairly wide variety of methods.  I believe detox, nutrition, oxygen therapy and a loving and peaceful faith-based life make sense, and they work for me.  There are simpler programs that are working for other people.  I invite you to inform yourself and get behind an effective protocol with all your might.

Kelli, ALS and Zhineng Qigong

Please read Kelli’s ALS reversal story with Qigong below the posters. Kelli was diagnosed with FTD/ALS in 2013 and attributes much of her recovery to qigong. In the meantime here is information on a free on-line qigong introduction followed by a paid online course.

If you plan to attend any free classes June 8-11 or June 13-14, Kelli would like to text or speak with you ahead of time to give you a bit more background. You can text her at 415-497-8690 or email her at upkelli@gmail.com.

MONDAY June 8 – THURSDAY June 11 Evening US time there are 4 Free Introductory qigong sessions. This is a special opportunity to experience qigong for free and online from high quality Chinese teachers. You don’t need to be able to move to experience qigong. Just imagine the movements that you cannot do in your head.

Login: https://us02web.zoom.us/j/5357685160?

Password: cDF4aFlhVlNGZ1ZYWktpSzNhQTZudz09

To register for the free qigong introduction: please email Renata Ramos Maza at larutadelpracticante@gmail.com and let her know Kelli McGowan sent you. This way you will get discounts if you decide to do the online course after the free introduction. Details at the bottom of this post.

 

 

 

 

 

 

 

 

Kelli McGowan was diagnosed with FTD, Frontotemporal dementia in 2012 and in 2013 she was also diagnosed with ALS. She was not worried too much about the ALS because the FTD was killing her. She was volatile, could not think, and in pain with the FTD symptoms. On top of that she had the ALS symptoms of muscle wasting, difficulty swallowing, holding things and needed help to go to the bathroom.

Kelli did a lot of holistic things to heal ALS, she took supplements, did homeopathic treatments, she ate a very clean diet, filtered her water, consulted holistic professionals. She had previously done a lot of research on holistic healing so was ahead in that area, yet now she had difficulty reading, thinking and organizing her thoughts. She read and researched whenever her mind was clear.

After an interview aired on a local station for dementia advocacy, a journalist offered to follow her story if she was willing to attend a zhineng qigong retreat. Kelli was very skeptical, and almost declined but finally decided to attend.

Kelli experienced such improvement in the weeklong qigong retreat that she ended up staying a month. Friends assisted her and at the end of the month both her FTD and ALS symptoms were greatly improved.

Kelli has continued her study of qigong, by attending retreats and studying. Today she practiced qigong daily online from her home and both her FTD and ALS symptoms continue to diminish. Today Kelli is over 90% improved as she continues her healing journey.

Here is information about the upcoming online qigong course:

 

Joyce Brown ALS Reversal Update

**Posted below are two 2020 videos, an interview and a Q&A Joyce’s contact info is below.

2020 Update on Dr. Joyce Brown

Joyce was diagnosed with ALS in 1988 at the age of 54. Today she is almost 87 years old young and living a full active life as a speaker.

Joyce’s main methods of healing ALS were:

  1. Prayer
  2. “Sleep teaching”
  3. Homeopathy & Acupuncture
  4. Changed diet
  5. Supplements including vitamin C, B and selenium
  6. Meditation
  7. Amalgam filling removal (done previously)

Below the videos, is a summary of Dr. Joyce Brown’s Healing ALS Story

 

 

Near Death Experience 1983. In 1983, five years before her ALS diagnosis, Joyce was extremely ill and almost died. In fact she did actually die and visited the other side. She documents her near-death experience in her book, God’s Heavenly Answers. Joyce learned many things while on the other side, about making the best use of your time while you are on earth, about not judging other people, and a lot of lessons on how to live your life.

Dental causes of disease. Among the other lessons, Joyce was told on the other side that in order to heal she needed to have a particular gold-crowned tooth removed. Although this tooth gave her no pain she went the next day to have it removed. The dentist did not want to take it out because the tooth looked perfect on the x-ray, but Joyce insisted, and it turned out that the roots of the tooth were black and infected. Joyce was also shown during her near-death experience how poisonous silver amalgam dental fillings are. (ALL silver amalgam dental fillings are 50% mercury, extremely toxic to humans, animals, birds, fish and more). Shortly after her near-death experience, Joyce had all of her silver amalgam fillings replaced with white fillings.

ALS Diagnosis 1988. Five years after her near-death experience, at age 54, Joyce began having muscle cramping, muscle twitching (fasciculations), difficulty swallowing, breathing, and walking, choking on saliva, and losing her voice. 

Joyce Brown

She went to visit a very well-respected Medical Doctor who diagnosed her with both ALS and Myasthenia Gravis. She didn’t believe the diagnosis. Why would she be saved five year previously only to die of ALS? She went to a second doctor who confirmed her diagnosis.    

To be absolutely sure of her diagnosis she traveled to a neurologist in Salt Lake City who had experience with ALS and had a third confirmation of her ALS diagnosis. The neurologist told her she might live until Thanksgiving, only five months away.

Hoping for a miracle she tried to find someone who had any kind of treatment that might work. Through her doctor in Las Vegas Nevada she learned of a homeopathic treatment from Germany that had apparently worked for some ALS patients in Germany. She agreed to try it and traveled 900 miles round trip once a week to get the treatments—injections which mixed her blood with the homeopathic remedy. She was also told to eat only whole foods and not consume meat products during the treatment period.

After 10 weeks of homeopathic treatments and 9000 miles of driving she still continued to get worse. Walking was extremely difficult, she could no longer eat in public and regularly choked on her food. People were having so much trouble understanding her speech that she looked for a voice board to communicate.

After 10 weeks of treatments Joyce’s doctor went on vacation for a week. She got so much worse the week with no treatment that she convinced the doctor to continue treatments when he returned.

All of this time Joyce continued to pray. She had a near death experience several years before her ALS diagnosis and had felt close to God since that time.

Joyce also knew that thoughts affected the body and so did not want to think anything that might affect her body in a negative way. She recited positive phrases out loud over and over again throughout each day to keep her mind positive. In addition, each night Joyce put on headphones during sleep listening to “sleep teaching”–her recorded voice repeatedly saying positive statements.

Joyce also decided to no longer attend ALS support groups during her treatment because they focused on how much everyone was deteriorating and what to expect with physical decline, instead of on what one could do to slow, stop or reverse the ALS progression. She did not want any negative thoughts entering her mind.

Joyce also saw a spiritual counselor and realized that in case she died she needed to forgive everyone in her life she felt had wronged her, including herself. She also asked God to bless her life. Looking back on this, Joyce feels forgiving herself and others was a key part to her healing.

Joyce continued to pray to heal, although she prepared in case God had other plans for her. She continued her weekly homeopathic injection treatments.

About a week after her 16th homeopathic treatment, while praying, Joyce felt a shift. She
described it felt like grey smoke lifting off of her. From that moment she felt different and when her husband came home that day he said she looked different. She no longer felt like she was choking.

In the coming weeks Joyce’s muscle wasting stopped progressing. Her doctor tested her and said her ALS was gone. She continued to gain strength over the next few months, although her muscle mass never completely returned. After more time, Joyce’s voice finally recovered completely.

Today Joyce is almost 87 years old, lives on her own and stays active. She has had life challenges and other health problems including two bouts with macular degeneration which have affected her vision but her ALS symptoms have never returned in the past 32 years.

Joyce is founder and president of Stress and Greif Relief, Inc., a 501(c)(3) nonprofit organization—helpstopsuicide.org, where she administers a suicide prevention lifeline (800-734-3439).

Joyce’s favorite saying is “Believe in Miracles, Expect Miracles and BE a Miracle for someone else.”

Joyce’s website is hopedr.org

To purchase her ALS Victory Package which includes her positive affirmations CD go to hopedr.org/ALS.

Joyce’s phone number for PALS ONLY please text to arrange a time to speak with Joyce: 1-702-677-1455.

To purchase her ebook Near Death Survivor Conquers ALS go to hopedr.org

Joyce’s book in which she describes her near death experience before she was diagnosed with ALS is called God’s Heavenly Answers by Joyce Brown, available on Amazon.

 

 

 

 

 

 

 

 

 

Coco Newton ALS Chapter in Functional Medicine Textbook

Here is the link to purchase the ALS chapter of the new Integrative and Functional Medical Nutritional Therapy textbook by Springer. The text book is available on ebook and pdf, hard copies are delayed due to the coronavirus. The ALS chapter can be purchased individually for $29.95 by scrolling down on this link.  https://www.springer.com/us/book/9783030307295 

The ALS Chapter, Amyotrophic Lateral Sclerosis (ALS): The Application of Integrative and Functional Medial Nutrition Therapy (IFMNT) is a very thorough examination of many, many aspects of ALS. It is written for medical professionals, yet it is something most PALS truly interested in healing holistically will want to keep around to read a bit at a time. You may not understand much of it on the first pass, but as you get more and more educated you will appreciate the science behind metabolism, inflammation, gut function, and oxidative stress for ALS patients and much more.
 
The chapter explains different diets and how they are metabolized. It talks about which fats will metabolize best for ALS patients, and natural detoxifiers you can include in your diet. The explanation of various supplements and why PALS may want to consider them is wonderful. Below are the topics covered:
 
There are gems in the chapter that most PALS will find useful in their healing journey. It is not to be read nor understood in one sitting for the non-scientific. Yet healing from ALS is a process and the chapter will give you ideas on how you can improve your protocol. Protocols such as the Deanna protocol are discussed as are things we may not have considered for ALS such as hyper-metabolism.  We would not be surprised if you find yourself referring back to this ALS chapter again and again and learning a bit more each time. The chapter is also a great reference to share with your doctor or nutritionist. Here is a sample page:
 
 
If you are not a medical professional, $169 for the entire textbook may not be worth it to you, but in our opinion the $29.95 for the ALS chapter in digital form seems wise. Since it comes in PDF form, you can print a copy for family members and to discuss with your doctor.  https://www.springer.com/us/book/9783030307295
 
About the author
 
Coco Newton, MPH, RD, CNS is a Registered Dietician and Certified Nutrition Specialist. She was also a member of the Michigan nutrition advisory panel. Although Coco began her career in conventional dietetics and public health nutrition, she soon realized that the chronic and complex issues of her patients needed more than her basic background. She pursued advanced training in Functional Medicine Nutrition Therapy (FMNT). By incorporating extensive diagnostic assessments and tools, she has created her new standard of care. Her passion is to see the health of people transform from hopeless to getting better.
 

We met Coco in 2013 when we interviewed Dr. Craig Oster, now a 26-year ALS Survivor. She is Dr. Craig’s nutritionist. We had interviewed some excellent functional Medical Doctors and Naturopaths around the country who had assisted PALS in reversing ALS. During our interview we were impressed with Coco’s depth of knowledge. It was clear she could hold her own with the best of them.  Coco’s website is CocoNewton.com.

Coco’s mission is to educate pALS, nutritionists and other healthcare providers to incorporate nutritional strategies to address the systemic imbalances in ALS. Coco was a featured speaker at the 2019 Healing ALS Conference. Those who attended the conference will appreciate her level of knowledge and expertise on ALS as well as her ability to explain concepts. Note that Coco has received no compensation for her work. She has donated her chapter.

More details on the textbook

Integrative and Functional Medical Nutrition Therapy: Principles and Practices is published by Springer. This textbook is for health care professionals, with peer-reviewed research backing up every sentence. It can be used by medical students in functional medicine programs.

From the publisher,Integrative and Functional Medical Nutrition Therapy: Principles and Practices will serve as an invaluable guide for healthcare professionals in their clinical application of nutrition, lifestyle assessment, and intervention for each unique, individual patient.”

This textbook is a practical guide to the application of the philosophy and principles of Integrative and Functional Medical Nutrition Therapy (IFMNT) in the practice of medicine, and the key role nutrition plays in restoring and maintaining wellness. The textbook provides an overview of recent reviews and studies of physiological and biochemical contributions to IFMNT and address nutritional influences in human heath overall, including poor nutrition, genomics, environmental toxicant exposures, fractured human interactions, limited physical movement, stress, sleep deprivation, and other lifestyle factors. Ultimately, this textbook serves to help practitioners, healthcare systems, and policy makers better understand this different and novel approach to complex chronic disorders. It provides the reader with real world examples of applications of the underlying principles and practices of integrative/functional nutrition therapies and presents the most up-to-date intervention strategies and clinical tools to help the reader keep abreast of developments in this emerging specialty field. Many chapters include comprehensive coverage of the topic and clinical applications with supplementary learning features such as case studies, take-home messages, patient and practitioner handouts, algorithms, and suggested readings.

 

 

Stephen Sherry Update 2020

Stephen Sherry was diagnosed with ALS in 1999. We had the privilege of hosting a Question & Answer session with Stephen Sherry in April 2020.

Part 1: Stephen summarizes what he did to heal in a video we posted in 2017

Part 2: April 2020 Q&A with Stephen Sherry

Stephen Sherry’s Story. Stephen was only 42 years old when he was diagnosed with ALS. This was 1999. He went to the top neurologist in Houston at the time, who confirmed he had ALS. Like many diagnosed with ALS Stephen had been under a lot of stress in the years leading up to his diagnosis—a divorce, a move, a stressful job, a job change.

Vitamins. Fortunately, Stephen was brought up in a household where natural remedies were used over medications whenever possible. His mother was always using herbs, vitamins, and foods to heal. So he asked his neurologist if there wasn’t something he could recommend to him. His neurologist said there had been some research that high doses of anti-oxidants might slow ALS progression and suggested vitamin C.

Research was key. After the initial shock and tears that inevitably follow an ALS diagnosis, Stephen, his sister and his then-girlfriend-now-wife began searching the internet for anything that might help nerves, muscles, and brain function, since the motor neurons are in the brain. As they researched, Stephen started adding other anti-oxidants and other vitamins including magnesium, omega-3’s, melatonin and more. He would add and subtract vitamins depending on how he felt and as he researched more.

Diet. Stephen also changed his diet. He no longer ate processed food. He read labels. He looked for foods that would build up his body. He read about detoxification, then ate foods and took herbs that would help cleanse his body of toxins.

Decided against prescriptions. Stephen was prescribed the standard ALS medication at the time called Rilutek, also known as Riluzole, but decided not to take it. He read about the side effects on his liver, which he knew was key to detoxifying the body. He also saw others at the ALS clinic he attended taking it and did not like the effect it was having on them. They seemed to be very tired and have brain fog. He felt he was doing way better with the diet, vitamin and detoxification regimen he was on. It also made more sense to him.

Life balance. Stephen kept working both because he enjoyed his new job and it took away the financial pressures of not working. His bosses were very flexible and he was able to sit for long periods at work. There were days where he was just too tired and they worked with him at these times. When he got home from work there were more articles to read and research, and of course, eat a clean diet and take his supplements.

Cannabis. Although Stephen used cannabis before being diagnoses, after diagnosis he used it medicinally because he felt it helped him both mentally and physically. Cannabis is known to be good for depression and physically he felt better on it. Stephen used cannabis oil, smoking and rectally.

Meditation and Attitude. Stephen also knew the importance of mental attitude in any disease and did his best to stay positive. He also used meditation to calm his mind and to visualize his body healing. With practice, he was eventually able to get to “quiet his mind” in just a few seconds. He found that doing this throughout the day helped him be calm and centered and in “healing” mode most of the time. 

Anything that will help. Stephen tried a number of things that were in the category, “They might help”. One of these was a Rife machine which after researching he decided to buy. He felt it made a difference, but as with many holistic treatments, he cannot be absolutely sure.

Amalgam fillings. Stephen’s sister kept sending him links about the dangers of amalgam dental fillings. All amalgam fillings are 50 percent mercury, one of the most dangerous neurotoxins on the planet! At first he did not believe these filling he had since he was a child could possibly be affecting his health, but the more he read, the more he realized that he would have to get them removed if he wanted to get better. He had so many fillings, in the end he decided it would be less expensive, and less risky to his health to have them removed and to get dentures, so that is what he decided to do. Within months of doing this in 2006, Stephen’s ALS symptoms began to reverse.

 

Today, 21 years after diagnosis, Stephen is doing well. He is able to walk, drive, do carpentry, work in the garden and play guitar. He enjoys time with his wife, family and friends. He is not cured. If he eats at a restaurant where there are additives in the food, he gets muscle cramping and fasciculations for a day or two. If he backs off too much on his vitamin regimen his ALS symptoms worsen and he simply increases his supplements.

Books and Resources. Stephen read articles about healing the body and the mind and he continues to do so. Early on he read neurologist Dr. Russell Blaylock’s work on excitotoxins.  He constantly looked for articles that showed what foods and supplements affected neurology. He read extensively on natural healing. Included were books and articles on emotional and mental health which he read were key to healing. Recent books are Behave, Thinking Fast, Thinking Slow, The Body Keeps the Score

Stephen Sherry’s supplement list. No dosages are listed since Stephen varied his dosages depending on how he felt. Stephen researched and experimented to find out what worked for him. Many are based on research and Stephen knows they are helping even if he doesn’t feel anything.

Dosage for you in particular will depend on your specific body’s needs and your specific symptoms. Many PALS get tested for deficiencies through a medical professional.

Pink Drink Recipe
3/8-1/2” ginger 
1/2 med to sm apple
1/3 cucumber 
1 or two stalks celery
1/4 beet and some beet greens
Some carrot
1/4 cup or so cilantro
1/2 dropper cbd oil
5-6 drops chaga mushroom extract
1/2 tsps lions mane powder 
1/2 tsps cordycepts powder
1/2 tsps reishi powder
1/2 tsps maca powder
1/2 tsps epimedium powder
1/2 lemon squeezed and maybe some zest
Sea salt
Filtered water

Supplements I use regularly:
Fish Oil
Coconut Oil
Magnesium
Maca
Silymarin
Vitamin B
Vitamin C
Vitamin D3
Curcumin
Vitamin E
CBD Cannabis Oil

Supplements I use sporadically:
Astaxanthin
Chromium Picolinate
Malate
Bee Pollen
Phosphatidyl Serine
Melatonin
D-Ribose
Sovereign Silver
Probiotics
DMSO
Magnesium Oil
Iron Supplement
CoQ10
Black Seed
L-Citruline

Possibly positive. I now use these sporadically or I would use them again if I think it might fit:
Idebenone
Beta Carotene
Alginol
Pycnogenol (Grape Seed/Pine Bark Extract)
Valarian Root
Lobelia
Kava Kava
Blue Lotus
Gingko Biloba
Parasite Cleanse
DL-Phenylalanine
Rutin
ALA (Alpha Lipoic Acid)
Vicodin
Catsclaw Extract
Selenium

Possibly positive, I would use them again when I think it might fit:
Olive Leaf
Grape Seed Extract
Grapefruit Seed
EDTA
Soma
Beet Extract
Hawthorne Berry
Bilberry
Acetyl L Carnitine
Stem-Kine (may boost stem cell production)
Zinc/Copper
Branched Chain Amino Acids
Potassium
Quercetin

I tried these but they had no effect so I discontinued them:
DHEA
GABA
Oregano Oil
Powdered Energy Drinks (I used several types over the years)
White Thyme Oil

Negative side effects. I would not use these again:
St. John’s Wort
Creatine

Manchester ALS Reversal

Below are links to 4 YouTube videos of Mark and Lisa followed by details of Mark’s protocol. The first is Mark’s story summarized in 50 seconds. Below that be sure to watch Part 1, Part 2 and Part 3  and read the protocol to get all of the details of Mark’s story.

Mark Manchester was diagnosed with ALS in 2011. He was in a wheelchair by the end of 2012 and by 2015 he could no longer move any part of his body and was dependent on a feeding tube and ventilator. Slowly beginning in 2017 and continuing in 2018 and 2019, Mark begin to improve. 

After over three years in a wheelchair and on a feeding tube and ventilator 24/7, Mark improved enough so he could have the feeding tube and ventilator removed and was able to walk on his own with a walker. Mark is not completely healed from ALS. His goal is to run again and ski again. For those who attended the 2019 Healing ALS Conference, please note that Mark was in a wheelchair at the conference only because he broke his leg, not because of ALS.

Mark is Dr. Richard Bedlack, MD, PhD from Duke University’s 42nd documented ALS Reversal. Below is a recent interview we did with Mark and Lisa Manchester. 

Mark and Lisa took a multi-pronged approach to healing Mark’s ALS. They remind all who are reading this that they are sharing what worked for them, and may or may not work for others diagnosed with ALS. Each person with ALS has different toxins in their body, different viruses and parasites, different vitamin and mineral deficiencies, and will have different mental/spiritual tools. Each person needs to find their own path to healing. This is what worked for Mark:

  1. They each researched the internet. They surfed the internet for ideas and as friends, relatives and medical professionals gave them ideas, they would research these possible solutions.
  2. Consulted medical professionals. In their case:
    1. Naturopath. Did basic testing and suggested initial treatment protocols.
    2. Concierge MD. Bounced ideas off of her and asked her to research items they thought might be helpful to Mark’s healing.
    3. Nurse Practitioner. The Manchesters have a friend who is a nurse practitioner who has given them ideas, researched for them and answered questions throughout Mark’s healing. It was she who suggested their naturopathic doctor.
    4. Physical and Occupational therapists. These have been key to Mark’s healing.
    5. Neurologist. It was Mark’s neurologist who first suggested the amino acid L-serine, which was a key piece of Mark’s healing.
  3. Testing.
    1. Mark and Lisa did a significant amount of testing ordered with the assistance of holistic medical professionals. They felt the NutraEval tests by Genova Diagnostics were very helpful. Gut function was tested, vitamin and mineral deficiencies, heavy metals and more.
  4. Diet, heal the Gut, correct vitamin and mineral deficiencies and detox.
    1. Lisa learned quickly that gluten, dairy, sugar and other foods caused inflammation and these were eliminated quickly, as were artificial flavors, colors and sweeteners. Eggs were never Mark’s favorite and they are largely eliminated because of their pro-viral properties. Vegetables and meat were organic as much as possible, and junk food and fast food were also eliminated. Once Mark went on a feeding tube, Lisa quickly rejected the standard feeding tube formulas and instead chose Liquid Hope or Kate’s Farm since these brands are organic and made from real food. Today, although no longer on a peg tube, Mark takes a serving of H.E.A.L. each day to get clean-sourced vegetables (HealinaMeal.com, use code “HealingALS” for 10% discount). H.E.A.L. can also be used as a complete feeding tube formula.
    2. Lisa and Mark researched what supplements they needed. Lisa early on figured out that Mark’s gut function was not good, and that he was not absorbing vitamins and minerals from his food so he did not have the building blocks to heal.
    3. Lisa researched supplements, got recommendations and finally decided upon Solle Naturals to provide what Mark needed to heal his gut, replenish his missing nutrients, and detoxify. She also added other supplements. Mark’s full supplemental protocol is listed at the bottom of this blog.
    4. Added L-Serine and Leap2BFit as key supplements that contributed to Mark’s turnaround (leapxx.com, use code “markman” for 10% discount). Mark takes once scoop on an empty stomach in the morning and a second scoop between 5PM and 8PM again on an empty stomach. See below for Mark’s full protocol.
  5. Strong belief in God and positive mental attitude. Both Mark and Lisa say prayer, meditation and positive mental attitude have been key to Mark’s healing. Their own prayers and the prayers and support they received from their church and community gave Mark and Lisa strength and encouragement. Also crucial was Mark’s positive attitude, willingness to try new things and research the Internet to find more information.
  6. Asked for support from family and community. Lisa has continued to work full time so Mark could maintain his health insurance. This means that she had to ask for volunteers and train family members, neighbors, friends, and paid caregivers to care for Mark when she was away and for breaks when she was home. She trained them how to transfer Mark using a Hoyer lift, how to care for his ventilator and feeding tube, how to comply with his eating and supplement schedule, and personal care. Mark had to acquiesce to having family members, neighbors and other volunteers do intimate personal care while Lisa was at work. Care for Mark would have been impossible without their generous help.
  7. Made the decision for Mark to go on a ventilator. In 2015 Mark was on a tri-pap 24/7 but was no longer getting enough oxygen to sustain him and his CO2 levels were climbing. Mark and Lisa prayed about whether or not to take this step to extend Mark’s life and after much consideration decided to give Mark every opportunity to heal and stick to Mark’s motto, “Never surrender”. Today they are very glad they made this decision.

According to Mark and Lisa, without ALL of the above, Mark would not have healed. They stress that just doing a few things is not enough, that an individualized comprehensive approach is necessary to heal ALS.

Mark’s full nutritional protocol is below the following two videos.

Mark’s Nutritional Protocol

Today, in 2020, Mark and Lisa continue to tweak Mark’s protocol. They remind those reading this that they started small and added things step by step, over months and years, and took away things that seemed not to be working. These are not recommendations, Mark and Lisa are simply sharing below what Mark is doing at this moment in time that is working for him.

Diet: Gluten-free, dairy-free, egg-free, no processed food, no artificial flavors/colors/sweeteners, organic whenever possible.
 
Supplements:
 
Morning (AM) : ***1/4 leveled tsp OR 2scoops that’s in jar of L-Serine 100mg.   (1 amino acid), purchase at www.Leapxx.com 
          *** 1 Scoop Leap2BFit (blend of amino acids & Turmeric,etc..) purchase at www.Leapxx.com 
(discount code markman)
 
           1/2 of dropper of Liq. Vit D3 10,000 IU **buy online, we use Vinco**
           1 capsule turmeric  1500mg … ** buy from Amazon
           1 gel high absorption CoQ10 100mg  **buy from Amazon
           1 gel Omega-7 Seabuckthorn **buy from Amazon
           
            Natures Sunshine : 1TBL Vit C Ascorbates **Contact Lisa for info or www.Naturessunshine.com, (Reference Lisa’s acct #433482) or call 1 800 453 1422
                                
            Solle Naturals: (plant based supplements) 
https://www.sollenaturals.com/naturalrevitalization/ or            (call them 1 888 787 0665 (Lisa’s acct # 260))
                          
                            1 Pack Vital (take in water)
                            1 capsule Adaptable         
                            1 capsule ProBioIQ
                            1 capsule Flex
                            1- 2 gel SolleMegas 3,6,7,9
                            1 capsule Verdezymes
                            1 Pack Cinnamate w/ AM supplements or midmorning/noonish,not later in day (take in water)
Also can mix Cinnamate and Vital in the morning together.
 
During the day Diffusing Solle Naturals Essential oils. It’s a blend, helps with the mind and body connection. It is very easy, keep it simple.
 
Mid morning/day Heal in a Meal (use code NSMM for a discount) or Solle Complete to make a shake/smoothie (w/ berries, almond butter, advocado,etc..or just with almond milk), 1 capsule Verdezymes                                                    
 
Mid day/afternoon or evening: *** 1/4 leveled tsp OR 2 scoops that in the jar of L-Serine with
              *** 1 Scoop Leap2BFit (on empty stomach)
 
                   1 gel Omega-7 Seabuckthorn
                   2 capsule Melatonin Extra 3mg  ** www.Naturessunshine.com. Lisa’s acct #433482
 
Afternoon/Evening PM:                                                                
 Solle Naturals :
                  (PM) 1 pack ReNue
                           1 capsule Adaptable
                           1 capsule ProBio IQ
                           1 capsule Flex
                           1 capsule FasTrack (helps going to bathroom/poo), sometimes 2 at night
                           1 capsule SolleMegas 3,6,7,9
                           2 capsule Verdezymes
                           also rub feet with Calm &/or Balance Essential oils with a carrier oil or Solle Flex AC cream(Solle Naturals)
 
Cistus tea: Mark takes Cistus tea as well throughout the day:
https://www.amazon.com/dp/B07BBQBBZZ/ref=cm_sw_r_sms_c_api_i_JUZNEbFY141RS
 
Note: Lisa and Mark are sharing what worked for Mark so that others can benefit. They are not medical professionals and each person needs to find their own solutions and get testing from their own holistic medical professionals. Lisa will answer questions about Mark’s protocol and can be contacted at: naturalrevitalization@gmail.com
                           
***are the amino acids that have helped
 
Pharmaceuticals
Mark used pharmaceutical medications sparingly when needed. He used Baclofin to help with muscle cramping and still uses this occasionally. He has used medications to assist with sleep, although now he feels the cannabis tinctures are working well, along with the essential oils. He needed antibiotics when he got infections although now is able to handle most infections with olive leaf extract before it gets to the point where he would need antibiotics.
 

Live stream & Recordings from 2019 Healing ALS Conference

June 12, 2020 Update

We have had a few unanticipated delays with the recordings. They are getting closer to being available. We are still in the process of regaining control of the conference website. We are also organizing volunteer committees to assist in running the day to day operations of supporting PALS at HealingALS.org to free up our time.

We do expect that the 2019 Healing ALS Conference Recordings will be available to all conference attendees sometime in June and truly apologize for the delay. They should be available for all others to purchase by the end of June.  We have encountered unanticipated difficulties as well as time challenges while we support many PALS both in the US and internationally. 

In the meantime, please come to the Healing ALS Community Support Meetings every Sunday beginning June 7, 2020 at 3PM Eastern time US/12PM Pacific time.

To all PALS, and all conference and livestream attendees,

Many are wondering, “Where are the 2019 Healing ALS Conference Recordings?” With a six month delay we feel we owe you an explanation. If you want the short story, it is that we do expect to have the recordings in the next few weeks and ask you to be patient just a little while longer. If you prefer the long version, it is below.

The 2019 Healing ALS Conference itself was magical. Of the almost 300 who attended were 100 PALS, including 10 who reversed ALS. PALS, families, medical professionals and others in the ALS community were there to support and learn from each other. It took six months of very hard work both by us and by those on our volunteer committee and it was worth every second. PALS and family members left the conference saying their lives had been changed. Medical professionals left with a new perspective on what is possible. We have spoken to PALS since the conference who have stabilized or started to reverse their ALS symptoms. This is exciting!

We fully expected to have the conference recordings to be available within two weeks of the conference. However, after the conference, the company we hired to do the website to post the recordings did not do the work we paid them to do. In addition, we lost control of all of our domains including HeaingALS.org for over three months. We could not post something on a domain we did not control, nor did it make sense to even work on something that could be lost at any second.

By the time we got control of our domains back it was mid-February, our busiest season, and we were working six days per week in our paid jobs. This effectively put the project on hold for an additional six weeks until our schedules were freed up. Once we had time, we then had to get on the schedule of the new website developer.

We are now back and forth with our developer, getting all of the pieces together and are making steady progress. It is a learning curve for us and we are going a little slower this time, rather than risk our website again by handing all pieces completely over to a developer. We do expect to have the recordings in the next few weeks.

Thank you for your understanding.–Patricia and Scott. In the meantime see below.

In the meantime, there is much you can learn and implement that will contribute to your healing.

  • We are hosting free Webinars every two weeks with live Q&A with links posted at HealingALS.org
  • Read the many blogs and articles on HeaingALS.org
  • Watch the videos on Healing Advocates YouTube channel
  • Shackel.org: This site if full of great articles on reversing ALS
  • ALSWinners.com: Great info in the monthly blog posts and Kim’s healing protocol.
  • EricIsWinning.com: Eric’s monthly posts from 2004 – 2014 are full of information.
  • If you are new, click the “How do I Heal ALS” button at the right the HealingALS.org home page and read the “Where Do I Start?” document.

 

 

 

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.

ALS and Stress

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