ALS Patient two year update on coconut oil and magnesium chloride

This is an email I received from Butch Machlan who has familial ALS.  He has given me permission to post this in my blog:

April 13, 2012

To whom it may concern:

From: C. (Butch) Machlan

Subject: Coconut Oil and Magnesium Chloride Personal, Social Clinical Trial

Purpose: To Update June 5, 2011 status

Background:  On March 9^th 2008 I started a journal to track my ALS symptoms.  It was also when I started the diagnosis process, which ended in September 2008 with the official diagnosis of FALS.  In late 2009 I started taking coconut oil and magnesium chloride to see if they would have any affect on my symptoms.  After a little over one year of taking these two things, and having some positive changes I decided I needed to do a better job of tracking my symptoms.  So in February 2011 I started tracking my symptoms each month on a special form created from several ALS Web-pages and related sources. 

The original motivation for tracking my progression was to be able to compare my ALS progression with that of my mother’s so I could be prepared for each step in the process.  Mother died of ALS in 1986 after 8 years and the loss of all muscle functions including her ability speak.  For over a year her breathing was done by a respirator.  The last 2 to 3 months of her life her only method of communicating was by blinking and moving her eyes.  At the time of her death the doctors were adamant ALS could not be inherited.  Now we know they were wrong!

After having some positive changes due to adding coconut oil (CO) and magnesium chloride (MgCl) to my diet my motivation changed.  It is now to see if I can continue to get more improvements, and to continue recording my status in what one doctor called “a Personal, Social Clinical Trial.”   “Personal” and “Social” because it’s similar to a conventional clinical trial even though it is not sanctioned or requested by any medical or research professional, nor is it done for any company or organization.  It is done just for me to help document the “before CO & MgCl” and “during CO & MgCl” for myself, the doctors, and others who may be interested.  Unfortunately, my experience has confused the doctors because they, like many others, “know” there is currently nothing available anywhere to help people with ALS.  This includes approved medicines, supplements, voodoo medicines, etc.

Since some of my symptoms have improved the doctors have been saying I have a “form” of ALS called Benigh Monomelic Amyotrophy.  This form is very rare, only affects one area or muscle group, and normally affects younger people.  I’m a 64 year old American!  After doing some research I went back to the doctors and asked a few questions, such as What about my muscle’s increased size and strength?  and What about my age, race, etc.  They had no response.  So my conclusion is; this disease is the closest they can find to match my current symptoms, and they’ve ignored the changes listed below.  However, they do say “Keep doing whatever you’re doing,” and “See you next year.”  I plan to do both! 

Diet Details:  I started taking 4 oz’s of magnesium chloride on Sept. 15, 2009, and started taking 3 tbsp of coconut oil on Oct. 31, 2009.  On Dec. 4, 2009 I increased my daily intake of coconut oil to 6 tbsp.  On February 8, 2010 I increased it to 8 tbsp per day.  From January 28, 2011 until now I’ve been taking 9 tbsp of coconut oil, (with my meals) and 2 oz’s (1/8 cup) of magnesium chloride/water twice daily (100 gms MgCl per 3 liters pure water).  I’m not had any problems taking the coconut oil because I started slowly.  From some research I’ve found it is important to start with 1 to 3 tbsp per day.  The reason is most people’s digestive systems cannot tolerate more in the beginning, and coconut oil is anti-viral, anti-fugal, and anti-bacterial, among other things.  Some people will have terrible “die-off” reactions as the coconut oil begins to kill these micro-organisms.  They might mistakenly think they are allergic to coconut oil, but they need to just start a LOT more slowly.  Sometime even start with only 1 teaspoon a day with meals.  It is very important to mix the coconut oil with food, and not try to take it straight!!!

Coconut oil Massage:  On Dec. 16, 2010 I started massaging coconut oil on my legs, feet, etc. because I read body builders and weight lifters use it to take the soreness out of their muscles.  It worked so good I now massage it on twice a day, once after my morning shower and just before bed.  It does stain the sheets, but the wash. 

Symptoms:  Following is a list of the “Before” and “Current” symptoms recorded on my journal and monthly status reports.  Not listed are the results of my March 2012 EMG which the doctors say shows no change from last year’s EMG.  Thus the doctors say there has not been any noticeable progression in the disease.  This is another reason why I think they say I have Benign Monomelic Amyotrophy, but they still can’t explain the muscle improvements, and all the other criteria I don’t fit.  The good thing is they now say I can live another 5, 10 or more years!

Before:  As of Sept. 15, 2009	Current:  As of April 3, 2012
1. Difficulty walking due to weakness in right leg; had to use canes to walk.	1. Still have difficulty walking due to weakness in right leg, and use canes or crutches to walk.
2. Right leg felt asleep and non-responsive when walking or trying to move it.	2. Normal feelings in right leg, and somewhat more responsive when walking, etc.
3. Right thigh muscles shrunken so bones could be easily felt through muscles on underside.	3. Increased strength and size in both legs, and can no longer feel bones through muscles.
4. RH thigh @ 14 1/4” & LH @ 15 3/8”	4. RH thigh @15 5/8” & LH @ 16 7/8”
5. Weight @ 148 lbs	5. Weight @ 152.9 lbs
6. ALS Functional Measurements @ 18%	6. ALS Functional Measurements @ 13%
7. Drop-foot	7. Slight drop-foot due to weak ankle muscles.
8. Can not tip right foot up or down, nor pivot it side to side as much as left.	8. Can tip right foot up and down, and side to side, but not as much as left.
9. Cannot move toes much at all.	9. Can move toes up and down
10. When sitting cannot raise right thigh upward to put on pants.	10. When sitting am able to raise right thigh upward to put on pants.
11. Extreme difficulty putting on right shoe.	11. Less difficulty putting on right shoe.
12. Right ankle very purple and bruised almost all the way around it.	12. Right ankle no longer has bruised appearance anywhere on it.
13. Unable to raise right foot when laying face down on stomach with legs outstretched.	13. Can slightly raise right foot when laying face down with legs outstretched.
14. Extreme difficulty rolling over in bed because right leg cannot move on its own.	14. Can roll over in bed with a minimum of difficulty.
15. Right leg cannot push downward at all.	15. Right leg can push down with some force.
16. Excess and thick saliva primarily at night.	16. No problems anytime with saliva.
17. Excessive yawning.	17. Normal yawning.
18. Cannot walk on toes of right foot.	18. Still cannot walk on toes on right foot.
19. Cannot stand on right leg at all because the knee will give way.	19. Can stand on right leg a while because it has gained some strength.
20. When sitting cannot pull right foot backwards at all.	20. When sitting can pull right foot backwards, although not yet as far as the left.
21. Mild insomnia	21. No insomnia
22. Moderate stiffness in right leg and foot.	22. Mild stiffness in right leg and foot.
23. Cramps in different areas of both legs	23. No cramps in either leg
24. Spasms in different areas of both legs	24. No spasms in either leg
25. Weakness in right buttocks, thigh, calf, ankle, foot, and toes	25. Still have slight weakness in right buttocks, thigh, calf, ankle, foot, and toes.
26. Weakness starting in both hands.	26. No more weakness in either hand.