Understanding ALS: Symptoms, Treatments, and Supportive Care

The comments below reflect the personal experiences and opinions of readers and do not represent medical advice or the views of this website. The information shared has not been evaluated by the FDA and is not intended to diagnose, treat, or prevent any disease or health condition. Always consult a qualified healthcare professional for medical concerns.

Magnesium Oil, Coconut Oil

1 User Review
5 star (1) 
  100%

Posted by Marty (Rye, NY) on 08/25/2014
★★★★★

Butch Machlan talks about solving als, runs in his family, using magnesium chloride, along with coconut oil.

Replied by Brian Lind
(Florida)
03/22/2024

I have ALS, what's this about?


Medication Combinations Can Mimic ALS Symptoms

4 User Reviews
5 star (3) 
  75%
(1) 
  25%

Posted by Heather (Sudbury, Ontario, Canada) on 10/22/2009
★★★★★

WARNING!

Editor's Choice

Many people who are on a combination of diabetic medications and cholesterol medication find that they develop symptoms that mimic Lou Gehrig's Disease.

I know of at least 5 women in my town who have been mis-diagnosed by their doctors. One had gotten to the point of all her muscles collapsing and her lungs and heart were stopping working. Luckily, a new young surgeon at the hospital's emerg. department realized what was happening and took her off the cholesterol medication. She went from almost comatose to up in a wheelchair in 3 days, and walking by day 5. Apparently diabetic medications or cholesterol medications by themselves are fine, it's the combination that's terrible.

Replied by Meghan
(Brooklyn, Ny)
12/02/2009
★★★★★

My father was recently diagnosed with ALS. I still have that hope that it might not be true. He takes both diabetic medicines and cholesterol meds. Can you by any chance find out what her medications were that she was taking? And how they figured out that the combo of meds were doing it to her body?

Replied by Syed
(Ontario, Canada)
10/04/2015
★★★★★

ALS -I lost my right hand movements ( called motor skills). I was taking 40mg of Lipitor for quite some time.

Replied by Rsw
(Oh)
10/05/2015

Hi Syed,

I am sorry to hear of your probably unreported "adverse reaction" to statin drugs. For up to date information on the newest findings about how statins affect the human body, see Dr. Duane Graveline's Facebook page here:

https://www.facebook.com/Spacedoc-373791966069660/timeline/

There is also a Yahoo "Stopped Our Statin Group" you can join to feel some connectiveness, research data and awareness of the thousands of statin victims out there.

Dr. Graveline is currently doing a study on Dolichols that are blocked along the mevalonate pathway along with CoQ10 and other pathways and functions essential to repairing DNA. Cholesterol is needed by every part of our bodies, especially the heart and brain. It is inflammation that we don't want.

We would like to see the statin drug companies use some of those enormous profits to fund research to help the thousands of people like you, in fact about 25% of people taking statins, to regain functions that were lost, sometimes permanently and progressively even after statins have been discontinued, after short-term/long term statin drug use. You are not alone and every person's experience and thoughts are important in finding a solution. Take care.

Replied by Linda
(Carmarthenshire.)
09/22/2016

My Mother was a strong woman with hardly any sugar or junk. As soon as the G.P. 's put her on Statins, her health went down hill . At age 69, she died when her Mother and Father both lived well and happy into their 80's and 90's ..... my Mum was on both Statins and Avandia and other drugs, which she probably never needed because she never needed Statins in the first place .


Melatonin

Posted by Sherry (TN) on 10/20/2020

Hello, I am gratefull for all the help I have received on this site!!

My Mother was recently diagnosed with ALS. So far she's only lost some use of arms. Now I am needing help in knowing how to proceed. I ordered supplements to begin Ted's basic ALS treatment-Lysine, threonine, glutamine, zinc, lithium carbonate, beta glucan, vitamin C, ascorbic acid, and BCAA. She will also go on sugar and gluten free diet.

I have a list of medications and supplements and am needing to know if any should be discontinued or anything added:

Riluzole 50mg 2x a day

Olmesarton-HCTZ 20/3.75

Progesterone 200mg

Synbiotic 365, Aleve gel, Womans Alive Vitamin, Vit. C, Elderberry, Omega Q10, Glucosamin Condroitin1500/1200, Red yeast rice, Lutein, low dose aspirin, Melatonin 10 mg, and Unisom Sleep

All help appreciated and I would love to hear Ted's recomendations!

Replied by Art
(California)
10/21/2020
2326 posts

Hi Sherry,

I see melatonin at 10 mg is on your list, so the following article may interest you.

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-079X.2006.00377.x

As you can see by the abstract, they used 300 mgs of melatonin/day(HDM) for up to 2 years in humans administered as a suppository. In the mouse part of the study melatonin was shown to delay disease progression and extended survival. In the human part of the study, melatonin was able to return oxidative stress levels to redox equilibrium as compared to the healthy control subjects and this is important because oxidative stress is doing much of the damage in ALS patients. Melatonin is available in suppository form otc, but if your doctor will prescribe it, your mother's insurance may cover it.

If not, there is this :

https://www.amazon.com/Zetpil-Melatonin-Sustained-Antioxidant-Suppositories/dp/B00DVMC3X6/ref=sr_1_37?dchild=1&keywords=melatonin+suppositories&qid=1603338241&sr=8-37

and this:

https://www.amazon.com/Zetpil-Melatonin-Sustained-Antioxidant-Suppositories/dp/B00UZ76N04/ref=sr_1_5?dchild=1&keywords=melatonin+suppositories&qid=1603338388&sr=8-5

One of the two drugs prescribed for ALS is Rilizole/Rilotek which is said to extend life expectancy by only a few months on average months. The other drug is called Edaravone /Radicava and is given via intravenous infusion and helps with daily functioning.

So clearly there is not a lot that current medicine has to offer for ALS.

In multiple other studies HDM has shown protective effects toward the mitochondria and neurons which are being destroyed in ALS. There is also bulk powder melatonin which would be less expensive, but this would have to be given orally and you are essentially on your own unless you can get a phone consultation with Dr. Shallenberger who is in Nevada. He gives his stage 4 cancer patients closer to 360 mgs of melatonin/day. He can give you a good idea on a dosing schedule for your mother and how best to use Melatonin in her case. His number is :

(775) 884-3990

Here is a link to his contact form:

https://www.antiagingmedicine.com/contact/

Good luck to you and your mom, Sherry.

Art

Replied by Patti
(Ohio)
07/09/2023

I've listened to “Doug Kaufman”podcasts.He gives excellent advice on this subject. (And many others ) He's helped ppl go from 4th stage cancers to Healed.
Most sicknesses start in the gut. “Funguses and parasites“ are the main culprits of most diseases..

Primarily, a changed diet is best. “Eliminate”.. processed foods, anything with yeasts, wheat, oats, etc. sugars and dairy.. Eat clean food.. raw vegetables, fish, some fruits, and meats.
You can start with a cleanse. “STANDARD PROCESS” brand seems to bring quick results.. Also Pure “Frankincense oil”.. Also, brings quick results.

God Bless you and your Mom with Godly Wisdom and quick recovery..


Multiple Remedies

1 User Review
5 star (1) 
  100%

Posted by Abe (Sydney) on 10/22/2024
★★★★★

Abe's Protocol for ALS:

  • Coconut oil (Virgin C.O. is best)(work up to 9 to 12 tablespoons per day, start at 1 tablespoon)(this seems to be very helpful for ppl with MND/ALS)
  • Sunflower lecithin (tip: have a tsp of sunflower lecithin with every spoon of coconut oil. Re-build myelin sheath and improves oil digestion)
  • Zeolites (pink is best)(2 tsp per day)
  • Diatomaceous earth (mix a heaped spoon of D.E. with a litre of water, add 1 drop or two of ACV, drink the water full of silica, leave the mud on the bottom - easier on kidneys)
  • D-mannose (1 Tb / day. A must to rid the candida & fungus and the metals that the candida is holding along with it)
  • Selenium 200 mcg /day
  • B-vitamin complex (plus additional B2)
  • Benfotiamine (B1) take 1 capsule, several times per day.
  • Vit D3 10,000 IU /day
  • Iodine
  • Boron 3 to 9 mg /day
  • Magnesium 400 – 1200 mg /day
  • Melatonin (3 to 50+ mg per night, 1 hour before bed)
  • NAC
  • Butyrate
  • Antioxidants
  • Follow a low carb diet & also avoid gluten. (High fats, eating lots of animal fats & eggs is very good).
  • Saunas are a useful adjunct to safe mercury removal because they induce copious sweating.
  • Increase circulation by exercising 20 minutes, one to three times a day walking or bouncing on a rebounder (mini trampoline).
  • Apply coconut oil and ACV on topically on sore muscles (very helpful).


Multiple Supplements

1 User Review
3 star (1) 
  100%

Posted by B.B. (Dallas, TX ) on 03/13/2019
★★★☆☆

Hello Ted, I am a 53 y/o woman that was diagnosed with ALS in 2018. I have lost use of my hands and have muscle atrophy in both hands and shoulders. My gate is now extremely shuffled. I also suffer from muscular twitching upper and lower body. My speech is slurred and I also have dysphagia when attempting to consume meals. My labs have revealed that my metal toxicity in my blood is extremely high. I have tried an abundant of supplements however nothing appears to be helping my symptoms. Is there anything that you can recommend.

Replied by Janet
(In)
03/14/2019

Ted's Remedies for ALS

Lysine, threonine, methylene blue, The L lysine L threonine Methylene Blue remedies for virus Lysine remedy 4 hourly doses 3 days 3 water bottles pour 1/2 of each in large measuring cup pour 1 inch of each down the drain, for water displacement In the measuring cup 12,000mg l lysine 4,000mg l threonine 1,500 mg of sodium ascorbate 2 droppers methylene blue. Whisk til dissolved pour back in bottles cap them Store in frig these go bad in 3 days. So toss and remake if needed. Mark each bottle with 4 lines equally, each is an hourly dose. 1 bottle each day. Methylene blue Methylene blue from amazon (1 two ounce glass dropper bottle. Amazon) comes as a powder in a bottle. Using distilled water for this one. Work on a glass plate. It stains. Vitamin c water removes the stain. Carefully fill the m.b. bottle to first rim. Cap and agitate. Fill dropper bottle 3/4 full of distilled water. Using dropper add 2 droppers of m.b. solution to dropper bottle. Cap, agitate. You will see dropper only fills 1/2 way. This is good. Urine may be greenish this is harmless and normal. Reserve large bottle to cure virus flu colds.

Janet
(In)
03/14/2019

Ted is still unable to answer posts after his stroke. I can give you some info.

We used Teds' spinal virus remedy, I expanded it to ALS remedy. ALS is commonly a virus picked up in a medical setting. So Ted emphasizes topical treatment to get a good kill. This takes some doing, you might need help with the topical. I make a castor oil pack on a folded paper towel. I fold 3 or 4 longwise and fashioned to fit the length of the spine. I add castor oil and pat it in to spread it without drippyness. The some DMSO sprinkled along the length, then sprays of magnesium. Oil. Finally drops of clove oil so it looks wettish. Sit on a towel. Drop onto spine. Sit back on a towel. Do this as often as you can. We did it for 3 days. A few times a day. Can be made on sheet strips. Can be stored in a ziploc. Refreshed 10 to 12 times. If nothing else put some firm lotion, not drippy on the back of a wooden spoon with clove oil mixed in. Or even a yard stick to get it applied. This might sting, test the mix an other skin so you are prepared. Your shopping list for an online retailer. Most powders are not sold in stores. In garden supply, Diamond black Humic Acid, 1 quart. A tablespoon in water a day Aquarium supply Methylene Blue, this must be mixed and mixed again, you might need help Clove Essential oil Castor oil Magnesium oil spray Some glass, dropper bottles and spray bottles, 2 or 4 oz Powdered bulk L lysine L Threonine Sodium Ascorbate InCapsules Zinc chelate is okay, it was what we had Vanadium In Gel caps Vitamin D3 is available now days, back then not so much. Buy one that is in coconut oil To get deep into the body and extremities I have been using vitamin B1 thiamine. Ted recommended Thiamine mononitrate. We use, lipothiamine. It seem to be a more absorbed b1. On Amazon. As is all this. Ted stresses the topical remedy. And the virus killing with humic and the lysine remedy Below is my lysine recipe to make a batch. Amounts can be changed according to remedy. The remedy goes bad after 3 days and must be remade. A great addition is hyaluronic acid. In capsules 3 to 600 mg a day. There are more suggestions within his posts. I thought this info might help. I will post recipe and Teds chapter below, separately. As my phone will not copy paste. Janet

Replied by Paracelsus
(Orlando, FL)
03/03/2021
47 posts

I think most people would benefit from taking transdermal vitamins & minerals. You can buy those as a patch, similar to a nicotine patch given to people who are trying to quit smoking.

The transdermal method of delivery has several advantages over oral delivery. 1. It goes directly into the bloodstream 2. It has better absorption rates (due to not having to go through the gastrointestinal pathway). 3. It is a form of time release since you should wear the patch for at least 8 hours. 4. You don't have to worry about interactions between supplements since that happens during digestion only.

Replied by Dana
(USA)
06/14/2021

IP6 Inositol helps remove metals.

Replied by Jane
(NC)
12/26/2021

I have been reading all these posts with ALS suggestions and everyone says a different thing. It is so confusing with everyone saying something different there is no way that I see how anyone can get an accurate path to follow. No one agrees on just about everything the others say so for me it is useless, but hope you benefit from it.

BevilNC
(NC)
12/26/2021

Good Afternoon Jane,

You have to start the path that makes the most sense and move forward from there by listening to your body. Your past exposures and health deficits make a one size fits all solution impossible. Everyone's exposure to halides, pesticides etc are different, everyone can be deficient in different important building blocks such as magnesium, Vitamin D, Iodine etc. Your body is the cure...your job is to remove what's hindering it and give it what it is missing to do the job and that's very individual. The important thing is to KNOW that the body can and will heal itself...you have to start giving it the proper conditions to work in. Try the ideas and advice of one regimen at a time, give the supplements time to build up in your body and work, take note of what's getting better and what's getting worse then research a bit more and add in or take away based on your results. Keeping a notebook where you record your daily intakes and make notes about daily symptoms and improvements helps a lot. It seems overwhelming I know but it really isn't and progress is usually very quick once you begin supplementing the basics and removing the bad stuff. Healing yourself is not about do this one thing and then go on with things as usual, it's a whole body experience and will change your life and the way you think about health. Don't be dissuaded, take small steps and where you start isn't as important as that you start. This community will be invaluable to you. There is a wealth of knowledge and experience here for you to rely on in your personal journey.


Ted's Remedies

3 User Reviews
5 star (2) 
  67%
(1) 
  33%

Posted by Janet (In) on 02/25/2017
★★★★★

ALS.. time and effectiveness are critical in your challenge. Here is Ted's chapter of emails responding to many folks needing help.

We have found Ted's remedies to be spot on with many serious illnesses. Almost every single thing is available on bulk suppliers, google bulk supplements, Amazon or ebay. The critical types of b vitamins for the most effective help I will mention is Swansons Activated b they sell 2 strengths buy the higher strength. Because you need to have the most bioavailable b. This is the only affordable one I have found.

Only buy powders and capsules you will get the best results. No pills.

I make my remedies at once. Usually in the morning for the day. For instance my lysine, threonine aspirin, methylene blue, sodium ascorbate, I put 4 doses in a bottle of fluoride free spring water. They are 10 to 12 oz. I mark 4 doses on the bottle. I pour out some water to make room. Add the ingredients. Shake and take teds recommendations of timing.

Methylene blue comes as a powder in a bottle. You fill that bottle with water, shake. Then you take 1 2oz dropper bottle, Amazon. Droppers usually only fill 1/2 way. Take 2 droppers of your original solution into dropper bottle add water carefully to a little below top you need room to put the dropper back in. Make this on a glass plate as it stains. If it spills, citric acid or lemon juice take it out easily.

Here is Ted's chapter. Janet

https://ted.earthclinic.com/cures/als-natural-treatment-supplements8.html

Replied by Nellie
(Virginia)
07/07/2017

Janet, once you have the methylene blue in the dropper bottle with the water, how much do you use daily?

Replied by Janet
(In)
07/08/2017

Nellie,

On an average I use 4 to 5 drops in water with 500 to 1000mg sodium ascorbate. Or ascorbic acid and a pinch of baking soda. The vitamin C keeps the methylene blue from getting a blue tinge in your eye whites. If you are well hydrated it does not happen. Your urine still might be bluish, it does not do anything. But you should always use the 2 together.

4 or 5 drops 2x a day in water with C. When I am killing a virus or cold I often add these together With four doses 500 to 1000mg of l lysine 500mg of C, then 6 drops of methylene blue to knock it out, taking 1 dose of them each hour for 4 hours, usually 3 days in a row. I add it all together in 10oz of water. Dosing as needed.

Methylene Blue should be taken before evening as it is energizing and may keep some people awake if taken too late in the day.

Janet

Replied by John
(White Plains, NY)
01/14/2024

Hello,

I was wondering if any commenters on this thread have any updated news on use of treatments Ted advised or other treatments.

Thank you

John

Art
(California)
01/14/2024
2326 posts

Hi John,

Here is a single case report of a person with ALS who was given Washed Microbiome Transplantation (WMT), a newer form of Fecal Microbiome Transplantation (FMT), which apparently stopped disease progression and improved some symptoms but did not completely reverse all existing symptoms:

http://www.jbr-pub.org.cn/article/doi/10.7555/JBR.36.20220088

Here is a relevant quote from the case report :

' In conclusion, we for the first time reported the positive clinical outcomes of using WMT for treating ALS. Although the disease condition of the present case was exacerbated by the use of antibiotics, the administered WMTs successfully reversed the worse status of the disease through a long-term follow-up. The current clinical findings would open a new window on the microbiota-based treatment for the life-threatening ALS. '

Okay, so that's the good news, but the bad news is that the chances of getting FMT in the US for anything other than clostridia difficile / C diff. or severe IBS d that have not responded to standard therapy is almost nil. If you notice, this case report is from China, and China seems to be on the cutting edge of FMT/WMT, whereas the US limits its use to the two health issues I mentioned.

Another consideration is the use of high-dose melatonin if you tolerate it, but melatonin can't come close to the results mentioned in the case report above :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8842494/

Here is a relevant quote from the article :

' Melatonin users had a significantly decreased annualized hazard death rate compared to the non-melatonin users [HR=0.241 (95% CI 0.088 – 0.659), p=0.0056]. The melatonin users also had a slower rate of decline of sALSFRS score (t=2.71, p=0.0069) and change of percentage of predicted FVC score (t=2.94, p=0.0035) compared to the non-melatonin users. '

Potential methods of action of melatonin in ALS is reduction of elevated oxidative stress levels and reduction of inflammation as well as reduced cell apoptosis.

So it seems that WMT/FMT may offer the most potential when compared to melatonin, but in order to get such treatment would likely require having to go to China which would make it next to impossible for the great majority of people with ALS and results are not guaranteed.

On a related note, the following review goes into detail about supplements typically used by ALS patients. Melatonin is on this list also :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631353/

Here is a relevant quote from the review :

' The benefit(s) of aggressive nutritional support in affecting disease course and survival are well documented. Enteral nutrition is best thought of as an early adjunctive therapy rather than a late palliative therapy. The patient population has embraced the use of dietary supplements in the form of vitamins, neutraceuticals and functional foods, often despite the absence of documented efficacy. The axiom that the absence of proof does not equate to the proof of absence 100 has fueled speculation among patients that these compounds should be tried even if the benefit is solely theoretical. Our role as practitioners is to provide oversight into potential adverse consequences from especially high doses or drug interactions. The concept of combining compounds or drugs is currently empiric although controlled trials are needed to address this logical treatment approach. The multifactorial pathophysiology of ALS has resulted in hypotheses that there may be subgroups of patients, eventually defined by a specific underlying etiology or clinical presentation, which selectively respond to a particular treatment. Future research endeavors exploring nutritional management and drug therapy will need to address this possibility. '

You will note that many of the discussed supplements are potent antioxidants and or potent radical scavengers.

Art

Replied by Nathan
(Columbia, Pennsylvania)
02/02/2024

Can anyone please help me understand Teds protocol for ALS. I just joined and signed up here and I'm so confused on the protocol and how to do each specific thing correctly. Am I able to talk to Ted somehow so I can fully understand please need dire help.

Jenny
(Saint Clair, MO)
02/02/2024

Nathan, Ted is no longer here on the earth.

Nathan
(Columbia, Pennsylvania)
02/03/2024

Sorry to hear that. May he Rest In Peace. Is there anyway you can walk me through his protocol for ALS? I'm too confused by what all I've read on here about this. I need help on how to do things correctly.


Ted's Remedies
Posted by Angela (Modesto, Ca) on 04/05/2013
★★★★★

Hello all! This question is for Ted

It's been a while since I posted, I have been busy with the care of my dad who is healing from als. He is being called the 'new' miracle man. Ted has been of major and effective assistance in this arena and my family and I continue to be grateful for his contributions. I wanted to ask Ted if he knew of any side effects of branch chained amino acids for someone like my dad who is not on any medications - except for acid reflux and constipation which are both PRN. He breathes room air (never been on oxygen) and continues to seek natural ways to help his muscles repair and rebuld themselves. What is your opinion on BCAA's positive and not-so positive?

Replied by Tonya
(San Diego, Ca)
07/18/2014

Hi Angela -- Can you tell me what worked and didn't work with the treatment for your "new miracle man" father? :) My mother has been recently diagnosed with ALS. Thanks in advance!

Replied by Sara
(Wisconsin)
06/06/2015

Hi Angela,

Your posting gives me hope for my mom who has ALS. I have my mom on the Deanna Protocol and she is also on Rilutek. She is getting so much weaker in her arms. She has drop foot and has a hard time getting up. She also coughs alot and has trouble projecting her voice. Could you please tell me what regime worked for your dad? This site has useful information but it seems Ted has recommended slightly different doseages and supplements for everyone with ALS. So Ted if you read this, I would appreciate if you would be able to otherwise recommend a regime for my mom, my best friend.

Thank you very much, Sara

EC: So sorry, Ted had a stroke in 2015 and has not been able to correspond since then.

Replied by Marie
(Ireland)
05/25/2016

Hi Angela I hope you are well. How is your father? I hope he continues to improve. You are obviously an amazing daughter. My brother in law was diagnosed with MND two years ago and even though he is holding his own compared to some people with this condition he is now in a wheel chair. He gets bad muscle twitching when he eats high sugar foods. Just wondering can you give any advice? Cheers Marie


Ted's Remedies
Posted by Janice H (Eastaboga, Alabama, Usa) on 10/10/2012

Ted, I followed your guidelines on the mixture of enzymes for my brother-in-law who was recently diagnosed with ALS after a process of elimination for other causes of MND. He said his kidneys seem to be overactive and after 5 days of treatment he was exhausted from sleep deprivation due to trips to the bathroom all night and day. He was drinking fluids yet still feels dehydrated. Is this normal when starting enzyme-treatment? Other concerns: He was water skiing (on one/two ski) this time last year, and rode his bicycle 500 miles in Jan (2012) when he had lower back pain & knee pain; his doctor recommended a regimine of 3 epidurals beginning in Feb (2012). Immediately after the first epidural he had severe muscle cramps and pain; his doctor recommended potassium and continued with the other 2 epidurals. Soon after he began to stumble and fall; loose strength and use of his hands. He continues to have pain in limbs, and recently fell injuring his shoulder; so he doesn't have paralysis; he just can't control his limbs. He has no problems eating or talking. His doctor refused to connect the epidurals with his sudden loss of control of his limbs. Recently there has been a recall of medication used in epidurals for back pain due to contamination resulting in "fungal miningitis epidemic" in the USA. NO DOCTOR WILL ADDRESS THIS ISSUE WITH MY BROTHER-IN-LAW; he has always felt this sudden onset of MND is related to the epidurals. What would you suggest his next approach in this matter? Thanks so much, I read all you material! Janice H



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