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john
10th June 2012, 15:53
Don't know if you have seen this on alstdi but if not here it is. May have some value.
Quote:-
Hi everyone,
I posted this on PLM - but if you don't go over there - here goes:

My son, Josh, started taking extra-virgin organic coconut oil about 30 days ago and we will never stop! We started with 2tbs per day to make sure it did not cause diarrhea - then went to 2x per day and are now moving to 3x per day.

What is uncertain on what is causing positive effects is at about the same time we started coconut oil we started L-lysine (500mg). Also around that time he had not been feeling well and the doc found pseudonomas in his sputum so Josh was also prescribed anibiotic, Avelox. I was worried about the choice of Avelox because it is a flouroquiniln (sp) antibiotic which can be bad for muscles and very contraindicated for myasthenia gravis (which Josh does not have? But he does have eyelid drop).

We started L-lysine based on obscure post on Pubmed that I found that shows it can help with angiogenesis and other positives after stroke (I will have to look for post).

Within days of starting coconut oil, L-lysine and Avelox Josh could smell and breathe through his nose - something he has not done since on the ventilator. Avelox effecting sinuses seems most likely but in addition he was 'feeling very good all over'. He asked to be kept on Avelox long term and our doc agreed - and we reconfirmed with Dr Rothstein at Hopkins that it was okay to stay with it if Josh felt it made a difference (referring to Ceftrioxone trial).

With the coconut Oil Josh has gained well over 10 lbs of good all over weight that he desperately needed. Even his forearms have increased in size (he was hand onset). He looks and feels the best he has felt in a long time. He says he has a renewed sense of caring about his hygiene and generally feeling mentally and emotionally better, stronger and happier. He is hungry for the first time in years (he has MicKey Peg) and is 'eating' well - taking lots of our smoothie concoctions as well as his Nestle VHC peg formula. He is having regular bowel movements - which previously he has had painful constipation and blockage no matter what we previously tried.

I ordered Dr. Newport's book on her use and study regarding Coconut oil (must be extra-virgin organic -- not the hydrogenated which is very very bad) for Alzheimer's and the 'science' is based on ketones and the medium chain triglycerides fueling the brain and fueling neurons. She now uses a 3:2 combo of ratio MCT oil:coconut oil for her husband 3x a day so that it stays in his system. I may consider adding the MCt oil for Josh - but not as yet.

Josh is also on several other daily supplements (Milk Thistle for liver, Biocurcumin, PharmaNac for antioxidant and lungs, probiotic culturelle, Truehope Empower, Magnesium, vitamin c, d3 & e, and sometimes emergen-c if he is feeling like he needs it). He is also taking days on days off of Iplex (Igf1-bp3 - end of our inventory).

So ... Even though we started the Avelox at same time (possibly assisting in positive results) - In my humble mono-experience - extravirgin organic coconut oil (and maybe LLysine) could be wrth a try...

Wishing you all the best,
Kathy T (Joshs Mom)

There is also some discussion and reported benefits on PLM(patients Like Me)forum.

John

soniamm
11th June 2012, 18:09
Hi john, we have already bought some coconut oil i have read a lot about its positive effects, my son now takes this daily i will post his progress, if any.

Sonia

john
30th September 2012, 09:35
Hi Sonia,

Haven't seen any feedback from you so don't know if your son has got any benefit from coconut oil. Here is another thread on the subject from alstdi with anecdotal evidence from one lady who is suffering from familial als. may be won't work for everybody but might for some. If you read from the top of page 2 the account is amazing.

http://www.als.net/forum/yaf_postsm355571_ALS-and-high-fat-diet.aspx#355571

John

Alienista606
30th September 2012, 17:11
josh...
yes i use hin from some time and take around 1tsp a day + using him for cooking
yes have some goods cos feel better after + my wife have more ME after I started taking him

john
30th September 2012, 21:51
Hi Max,
Not seen you posting for some time. Glad you are a little better. Have you tried increasing the dose like the lady who is reporting on her progress?

John

Alienista606
1st October 2012, 08:18
Hi john
yes im not bad so Tx
regarding oil......i try from today making 2tsp a day. my wise loves this oil and she use him as body balsam and she is very happy whit this.

koala
7th October 2012, 04:45
Hi john
yes im not bad so Tx
regarding oil......i try from today making 2tsp a day. my wise loves this oil and she use him as body balsam and she is very happy whit this.

Hi Max

I just started to take coconut oil, I thought that we should start with a tea spoon a day so I am having that mixed with my milk in am.

To start with a table spoon,can I ask how are you taking it?
Does your wife cooks with it or you just take a spoon full in your mouth?? A bit too much I think...

Can I have some help here??

thank you

Koala

roy
7th October 2012, 09:47
Hi Koala,

Finding it also makes me gag if I try by spoon,now have it with crumpets and toast,I think Max has many other cooking methods.
I think Bob on the forum also likes a bit of crumpet with his.

best wishes.

Roy.

Alienista606
7th October 2012, 10:10
hehehe for me its ok taking some tsp strait to my mouth cos I love coconut so im happy whit this method.

try speed on toast and put some pineapple and some chess then grill them

its so many method to us this....

Alienista606
7th October 2012, 10:42
this only going whit you imagination but when need some extra help.....


http://www.freecoconutrecipes.com/coconut_oil_recipes.htm

scroll down and you finding some recipe

bon appétit

koala
8th October 2012, 07:33
Hi Roy, Max

Thank you so much for your ideas.

Today at work tried to have 2 cuppas with it and I think was a bit too much...too oily for me but I will try your ideas.

Thank you :)

Koala

Robert
8th October 2012, 12:08
Hello,hey Roy I have a tablespoon in my readybreak for breakfast as I'm not a lover of coconut,although smeared on a bit of crumpet could make an interesting experience.

Regs Bob

koala
9th October 2012, 01:05
Hi

This morning I did try it on toast.
It is ok for a change from my "wonderful "butter,also used it to cook with and for sure we have a few ways to use it.
Hope it works....

kolala

Terry
11th October 2012, 19:22
Hi John;
I bought some extra virgin coconut oil and was later told that it was bad for me as my cholesterol is a bit high now. After looking into it a little it would seem that two thirds of the oil contains good fats, but heat changes the good fats into bad ones for cholesterol. Has anyone more information on cholesterol and this oil.
Thanks, Terry

Alienista606
11th October 2012, 23:48
maby this be helpful...

http://articles.mercola.com/sites/articles/archive/2011/06/22/magical-fat-that-increases-good-cholesterol-and-lowers-abdominal-obesity-in-women.aspx

http://www.webmd.com/diet/features/coconut-oil-and-health

roy
18th October 2012, 16:02
warning have to report should have gone to spec savers,consumed 2 tablespoons rather than teaspoons.Result very exciting,lucky for me as a youngster used to play dam busters in the 3 horseshoes pub,you clench a 50p bit between your buttocks whilst humming the dam busters theme tune walk 6 metres and release in an empty pint pot-failure buy the nest round.Point is only just made it since my walking if you can call that isnt so hot these days but the training come in handy.

best wishes

Roy.

Alienista606
18th October 2012, 17:47
hehehe yep its nice one.
about oils its all depend you body . after some time and increase dose its no problem for 2 spoon on one go.
but yes try this first time and defo need some new toilet rolls.

JRoger1
2nd June 2013, 21:21
On coconut oil you might be interested in the following website blog from a doc.
http://coconutketones.blogspot.co.uk/2012/05/als-patient-two-year-update-on-coconut.html

I found it when checking out magnesium for MND. Funnily enough my dentist recommended magnesium.

Big Steve
3rd June 2013, 09:32
Good morning

That sounds extremely encouraging. I think I will give that a go as the symptoms that "Butch" has been experiencing are very similar to my own, except for the hands which are unaffected in my case.

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