Has anyone had a good experience with any of the following?

Hyperbaric Oxygen Therapy, Chiropractic, Acupunture, Coconut & MCT Oils, Chelation Therapy, Azilect, Dr. Hickey at The Hickey Wellness Center in South Carolinia

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No experience whatsover, mainly because the therapies you listed are by and large considered "alternative"
or "homepathic" remedies none of which there is no evidence whatsover to support claims they will cure
ALS or any other disease-or at the very least minimize the symptoms. The Hickey Wellness Center for example claims that "heavy metal toxics" in blood are responsible.

In my opinion such claims are pseudo-scientific medical quackery designed to empty your pocket-book. money
best spent on credible medical care.

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Thanks Mike405.

Unfortunately it took the "credible medical care system" 2 1/2 years to diagnose my condition correctly and they have offered me nothing but Rilutek. The disease progression coincidently accelerated at the same time as starting Rilutek. So I'm looking for credible alternatives backed up by real life experiences. If enough people are gaining on an alternative therapy and it makes some sense to me, I would certainly be interested in trying it out myself.

I understand that there are some promising, credible medical studies results to be released shortly. Are you aware of what they are?
Hopfully they will be a big improvement over what is available now.

Pericles

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I can tell you that I started taking coconut oil and magnesium chloride in late 2009, and now my improvements are confusing my neurologists, physical therapists and genetist! They all agree I still have a FORM of ALS, but can't say why my EMG's have improved when compared to the ones done during my diagnosis in 2008. They all say "there is nothing that helps." However, they also say "Keep using it!" They've given me 3 EMG's so far this year, apparently each one has been a little better than the previous one. I still walk with 2 cane or crutches. When I started I thought "What do I have to lose?"
If you want more details let me know!!!

Checkout the following for some additional information on coconut oil.

Coconut Oil and Ketones - Mary Newport
http://coconutketones.blogspot.com/

Videos for dr. newport and coconut oil
http://www.google.com.mx/search?q=dr.+newport+and+coconut+oil&hl=en&biw=815 &bih=906&prmd=ivns&source=univ&tbs=vid:1&tbo=u&ei=eRVYTdeiDoS4sAONprGdDA&sa =X&oi=video_result_group&ct=title&resnum=4&ved=0CDQQqwQwAw

www.coconutketones.blogspot.com

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I have had Hyperbaric Oxygen Therapy for my diabetic foot ulcers. The therapy is phenomenal and makes the healing go much faster. I have had 2 different sessions, each lasting 6 months each. My wounds were extensive so that's why the length was so long. I'm glad I had the opportunity to have this treatment

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Thanks for this Birdman Two.

I have a few questions. I've just this week started to take MCT and Coconut Oil mixed together 50/50, 2 tsp. of the mixture with each meal along with fish oil and cod liver oil 1 to 2 tsp. (total 3 tsp.) at breakfast. I tried more MCT and Coconut Oil but could not tolerate those levels. I'm tolerating this and will try to increase it gradually. How long did it take you to get to your 9 T. level and did you experience any side effects along the way?

You mention magnesium chloride. I am taking magnesium pills twice a day. What form is the magnesium chloride and how often do you take it?

Are you aware of anyone else with ALS using the coconut oil? We found out about this by reading Dr. Mary Newport's blogs and like you said, what have I got to lose.

Thanks again for this information. Pericles

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Hi a57babe,

I'm very glad to hear about your success with Hyperbaric Oxygen Therapy. Are you aware of anyone with ALS being helped with their symptoms with this treatment?

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I started taking 4 tablespoons of coconut oil per day for a few weeks. Then increased it up gradually. By the third month I was taking 8 per day. Now I take 9 (3 at each meal). At first I tried to eat it directly off the spoon, but had problems so I learned to melt it in the microwave, and spoon it onto my food. (Coconut oil melts at 78 degress) I eat it on almost everything! I think one of the reasons I've had the positive changes is because I try to keep higher than normal levels of ketones in my system all day.

As for the magnesium chloride, I buy it in crystal form, and mix it with water. Here's a link to a source if you are in the US:
http://www.myworldhut.com/products/Nigari-Flakes-Food-Grade-Tofu-Solidifier -From-Japan-Bulk.html A friend of mine buys his there. Here in Mexico MC crystals are available at the local pharmacies. I take 2 oz's of a MC/water mixture twice a day, which gives me a higher dosage than with most supplements. The above webpage recommends 1/2 teaspoon with mixed in water twice a day (If I remember correctly). Note: I'd recommend using plastic or glass containers, and plastic utensils to avoid contamination. Apparently MC and water have a negative affect on metal.

Many people have expressed disbelief that something so simple (and cheap) as these two things can have any affect on ALS. Sometimes simple and cheap is good! I figure I spend less than $1.50 USD each day, and thus far have had positive changes. But, it does take time and dedication. It took me about 4 to 5 months before I noticed some positive changes. Good luck!!! And, DON'T GIVE UP TO SOON!!!

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BirdmanTwo...by positive changes do you mean you have regained some strength? or what. At what stage did you begin these therapies?

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Will77
Following is a something I think will answer your questions. It's a section from a letter I wrote to my doctors in June of this year to help them better understand where I've come from and what has happened. Please let me know if you have any additional questions!

A. Before Taking Magnesium Chloride and Coconut Oil: (Sept. 15 and Oct. 31, 2009)
1. Difficulty walking due to weakness in right leg; had to use canes to walk.
2. Right leg felt asleep and non-responsive when walking or trying to move it.
3. Right thigh muscles shrunken so bones could be easily felt through muscles on underside.
4. Had “drop-foot”. Could not tip right foot up or down, nor pivot it side to side as much as left.
5. When sitting could not raise right thigh off the chair.
6. Extreme difficulty putting right shoe on.
7. Right ankle very purple and bruised almost all the way around it.
8. When laying face down on stomach with legs outstretched; unable to raise my right foot.
9. Extreme difficulty rolling over in bed because right leg could not move on its own.
10. Right leg could not push downward at all.
11. Very thick saliva at night.
12. Excessive yawning.
13. Nearly constant muscle vibrations in entire right leg; some in left leg and upper right arm.
14. Cannot walk on toes of right foot.

B. Changes Since Taking Magnesium Chloride and Coconut Oil Daily: (June 5, 2011)
1. Right leg and foot have same feelings as left.
2. Increased strength and size in front muscles of right thigh but still weakness in buttocks, back thigh muscles, and muscles affecting knee.
(NOTE: I track my status monthly, and as of today all of the muscles in my right thigh have increased in size and strength. On 09/15/09 (when I started) the circumference of my right thigh was 14 1/4". Today (09/21/11) it's 14 7/8" which is an increase of 5/8".)
3. Left leg strength and size increased.
4. Can stand on right leg a little longer because it has gained some strength.
5. Can move right foot and toes up and down, and tap foot to music.
6. Can pivot right foot inward and outward some.
7. When sitting; can pull right foot backwards, although not yet as far as the left.
8. When sitting; able to raise right thigh upward to put on pants.
9. Less difficulty putting right foot into a shoe.
10. Bruised appearance of right ankle almost gone.
11. When laying face down on stomach with legs outstretched; can begin to raise my right foot slightly.
12. Normal yawning.
13. Can roll over in bed with minimum difficulty.
14. Can push downward with right leg.
15. Muscle vibrations in right leg only happen occasionally.
16. Still have very slight twitching in right leg and buttocks occasionally.

Additional:
ALS Functional Measurement "Theoretical loss" has decreased from 18% to 13% as of 08/31/11

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Birdman, Were you carrying a diagnosis of ALS before this therapy, and is that still your diagnosis?

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Birdman Two,

I'm having difficulty with nausea, indigestion and constipation since starting the coconut oil. Did you ever have these problems or any others? If so, how did you deal with them?

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Pericles:
When I started taking the coconut oil I had the same problem so I tried melting it and then mixing it with my food. This eliminated the problem. However, I use to take 4 tablespoons twice a day, but changed to 3 tablespoons 3 times a day because 4 at one time would sometimes upset my stomach. I think 3 tablespoons 3 times a day is also better because it helps keep the ketones in my system longer.

I buy the coconut oil in one gallon containers, and switch it to a small, plastic, cottage cheese contain for daily use. I then put the small container in the microwave for about +/- 30 seconds so it’s liquefied.

Will77:
I was originally diagnosed with FALS in Sept. 2008. Since earlier this year I’ve seen my regular doctor, 4 different neurologists, an orthopedist, a geneticist and several doctors involved in the physical therapy activities. All still agree “I have a form of ALS”. They are also in agreement that they don’t understand why/how I’ve had improvements because they've never had that happen before. But they do say to keep using it!

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This disease was first diagnosed or labeled what, well over a 100 years ago. I suspect, just about every conceivable concoction has been tried & tested, but I know there's always another around the bend. The question is & remains...if the coconut oil thing really, truly worked, do you not think the medical & science world would be going nuts to get every patient on-board? And then we could all make a fortune in coconut futures? If you believe this stuff works, well, good for you & the best to you. It wasn't long ago they thought lithium worked too....and it was used in "mega-doses" world wide in attempts to see if it worked. It didn't. And that was in a controlled test environment. Of course, then we had liver issues and thyroid...good old cause & effect at work. Even this rilutek stuff...it "might work"....if you start on it soon enough. It's suppose to extend life by maybe 1 or 2 months....is that at the beginning or the end? I'm not certain. I know after a certain stage of the disease, the effectiveness of continuing with this med doesn't pan out. And at what? $1500 a month? For maybe 2 months by who's measurement? If you do not take other corrective actions or measurements, such as a ventilator or feeding tube, etc, I'm pretty darn certain rilutek has zero effect. And then it's hard to say was it the med or the fact that you finally got a machine to breath for you that held the greatest impact?

Coconut oil? Magnesium? And then sit on the toilet all day? What about potassium replacement? How about
dehydration? Or was that dizziness caused by something else? Well, if you believe it's working and you really have a confirmed diagnosis of ALS, please get this information to the medical community where it may have it's greatest impact, like the Mayo or Northwestern Univ., etc. I apologize for being so bombastic, but I think what you may have here is a new formula for a suntan lotion. I'm pretty certain it is not stopping or curing ALS. Might be wrong, been known to be that a bizzilion times. The best of luck.

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On Tuesday of this week, I had my latest visit at the ALS Centre. I discussed the coconut oil with one of our doctors, who had never heard of it. He thought that I had nothing to lose in trying it and asked to be kept informed about how I am doing with it. This center is heavily involved in local, American and global ALS research.

Some ALS experts have the idea that ALS is not one single disease but one with several sub-sets and that each might respond differently to different treatments.

Dr. Mary Newport, a neo-natal specialist in Florida and wife of an Alzeimers patient who continues to improve on coconut oil, is doing all she can to get the information out. Now we know that ALS and Alzeimers are very different but she has had feedback from some ALS patients who have improved on coconut oil.

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You weren't being bombastic, MikeLi. Almost word-for-word you stated what I was thinking. A cursory Internet search on the efficacy of coconut oil claimed here revealed the so-called evidence is strictly anecdotal hearsay. It appears the noise was originally generated by Dr. Newport and to my knowledge a valid double-blind study has never been conducted. Readers of this discussion might also note Mexico is known for harboring highly dubious alternative medical “therapies.”

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Mike405
I understand your view of Mexico. So tomorrow, during my appointment with three of my current doctors, who went to school in London, New York, and Rome, I’ll past on your comment. I’m sure they will agree with you! Maybe it’s from drinking the water!!!

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MikeLil and mike405
I agree with you that if coconut oil really worked, like it has for me, researchers would be very interested! At least that’s what I thought in 2010 when I tried to contact eight ALS researchers who had written articles on their research. Only one of the eight ever responded back, and that one just said “good luck!” I’m sure this probably happened because, they’re very busy, and get many emails from people like me. Another reason could be because I’m a “one store survey.” Apparently I’m the only person doing something that has resulted in positive changes to my ALS. Thus common sense say “this inexpensive and easy to obtain stuff can’t really work because “it’s just too simple!” If it was so good why aren’t more people using it, and having improvements too?

To really determine if this stuff works or not it will take several more open minded people willing to use the stuff for a year or more, and track their status monthly, which is what I’ve been doing since November 4, 2009. If you know anyone like that who feels “they have nothing to lose” please have them contact me. I’d like to see if others have similar improves too!

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I wish you the best with your experiment. My beef is that while this treatment may work for you, it could very well harm many who may try to "imitate" your success and in the end, very possibly harming themselves, creating another major medical issue or worse. There is no rhyme or reason to the dosages used; no real medical backing of this self treatment and in the end, to date, I'm not aware of anyone, with a diagnosis of ALS, that has had the disease reversed or cured. What is the measure of success? Have the cells changed? Is the diagnosis still ALS or is it another neuromuscular disease now? ALS and the speed at which it progresses differs for every single patient. And it can be a very slow moving disease giving the appearance that the patient is or has "made progress". I can tell you for certain that both my wife & her mother had good days, even weeks where the symptoms subsided, only then to come back and many times worse than before. My wife's ALS was bulbar onset and she lasted just short of 3 yrs from diagnosis, primarily because the disease was already in her diaphragm. Her mother, who succumbed to it back in the '70's, had an official diagnosis for nearly 5 years before it took her, but her's was the more common form where it appeared in her extremities first. Yet, it was still ALS in both, just differed in where it manifested itself first and based on that, the time varied on it's progression. Only in the last few months or just weeks have they've even announced that might have found a common thread in the genetics and what have you...

My key issue here is that while this maybe working for you, it could end up harming another or possibly leading to something much, much worse. While we are all responsible for ourselves, I do not believe this is the forum for the promotion of a treatment not medically approved nor even being studied today. There is no "ethical" nor moral responsibility either, but if someone wants to contact you on a personal basis, get your input based on personal experience, that's up to them. But the actual bottomline here is that this is not a cure, it is not even a "treatment". If someone follows the instructions stated, gets violently ill or dies, who then is responsible? Are you willing to accept that? My take is let doctors be doctors and where there is a viable study, everyone knows the risks they could be taking. But in this manner, where at best its haphazard, no. There are many studies taking place now...I would rather see the patients be involved in those versus any sort of self medicating practice.

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I too have recently begun taking coconut oil and a magnesium chloride solution. My symptoms are almost the same as BirdmanTwo's except my affected side is the left. I haven't taken it very long but I can tell you I have begun to see an improvement in the blood circulation in my left foot/leg. It is not so blue looking and the edema is better. It feels stronger too.

I saw a naturopath for about 7 months last year. I took EDTA chelation therapy during that time. I think it helped in detoxing but I can't say my ALS symptoms got any better. The naturopath also prescribed monolaurin, a natural substance that is supposed to kill viruses and bacteria. Lauric acid is one of the active substances in coconut oil and that is what monolaurin is.

I also recently began participating in the Dexpramipexole clinical trial at Vanderbilt. Between the new drug, coconut oil and MCS, I am hopeful. I am seeing some improvements. Who can say if it is one or all of these substances.

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