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.