Mom Diagnosed with ALS (Lou Gehrig's Disease)...Help?

[Birdlady]

Oh that is just awful. I go through times where I lose hope too. It can be really tough to deal with something that docs say there is no cure. My condition has no cure either. The prescriptions they give for it do nothing for me either, so I'm not on them. I refused to believe them at first that it was incurable. I thought it was gonna be simple. However the further I dig, the more things I try without success I am starting to believe them a little. Maybe there really is no cure for these nervous system ailments.

I had a heavy metal test done and I think it was about $200. I was given DMPS and then collected my urine. Natural doctors can be just as criminal as the regular mainstream docs. I found a good one about an hour from where I live who doesn't overcharge and doesn't push expensive supplements either. Does he have the answers to my issues? No, but he is willing to listen to me and let me try new and strange things. He understands that I'm not one to give up and will try just about anything once to see what happens. He is actually the one who ordered the NutrEval test which showed my organic and amino acids are really out of whack. I bet your mom's should show some weird results too.

Unfortunately if your mom has given up, then there really isn't much you can do. You can't make someone want to try things. I've been through this with my own family and it is very tough watching them get worse and worse.

I believe it and we've been told that a few times as well. She's tried using supplements, herbs, etc to reduce the glutamate production but they haven't done anything. I am almost positive she has high amounts of some type of metal but there are several issues with the process. We don't have any legitimate way to get the testing done and then turn around and actually have her do a detox. The money isn't there and most importantly, she essentially believes at this point that all hope is lost and it is simply an exercise in how much longer she can make it. She is pretty much unwilling at this point to try anything that inconveniences her for any stretch of time primarily because she knows she doesn't have much time left, and thus it makes no sense to make that remaining time any more uncomfortable than it has to be.

Also important, there is no confirmation that what she has is actually ALS or even close to it. The doctors have been completely baffled throughout this process and the more they see, the less they know. I can't truly blame her for feeling hopeless. After all of this time and all of this effort and money, we have absolutely nothing to show for it. This says more about the epic failure of the medical system than anything.

 

[TCE]

TCE, did you ever try organic unfiltered apple cider vinegar?

I saw a whole laundry list of other things that were tried, I've really heard a lot of good things about this stuff and have taken it on and off myself for about 10 years.

I recommended it to her since I used it, too a few years back. The taste is horrible, but if mixed in water, it's bearable. It also has a bunch of medicinal uses such as curing dandruff (I used it for several months on my hair and it really helped). I could try and make another push, but she has refused it in the past. I guess I could argue she could mix it in with some organic juice...hmmm.

Oh that is just awful. I go through times where I lose hope too. It can be really tough to deal with something that docs say there is no cure. My condition has no cure either. The prescriptions they give for it do nothing for me either, so I'm not on them. I refused to believe them at first that it was incurable. I thought it was gonna be simple. However the further I dig, the more things I try without success I am starting to believe them a little. Maybe there really is no cure for these nervous system ailments.

I had a heavy metal test done and I think it was about $200. I was given DMPS and then collected my urine. Natural doctors can be just as criminal as the regular mainstream docs. I found a good one about an hour from where I live who doesn't overcharge and doesn't push expensive supplements either. Does he have the answers to my issues? No, but he is willing to listen to me and let me try new and strange things. He understands that I'm not one to give up and will try just about anything once to see what happens. He is actually the one who ordered the NutrEval test which showed my organic and amino acids are really out of whack. I bet your mom's should show some weird results too.

Unfortunately if your mom has given up, then there really isn't much you can do. You can't make someone want to try things. I've been through this with my own family and it is very tough watching them get worse and worse.

I absolutely know where you're coming from. The only advantageous thing so far is that the doctors are universally baffled on how she has made it so long. One even told us that his services would be useful to us, because in his estimation she should have been dead a year already, and if he was wrong about that, he probably couldn't help. I give him credit for honesty.

I thought the same thing. I figured I'd do some Google searches on some natural health websites and I would get some answers, but no. Years later, I feel like I could write a book about what doesn't work so someone else can try everything that's left. Was the mercury/heavy metals testing how you found out about your high heavy metal levels? Is the NutraEval test expensive and what were your results? I did a bit of research after I saw your post and it looks extensive in the way of getting all of the blood taken, but I'm sure my mom wouldn't have much of a problem doing that.

Even though we have been burned by two natural health doctors, I am going to run it past her to try one more. This time we would more properly screen them for legitimacy.

 

[dannno]

I recommended it to her since I used it, too a few years back. The taste is horrible, but if mixed in water, it's bearable. It also has a bunch of medicinal uses such as curing dandruff (I used it for several months on my hair and it really helped). I could try and make another push, but she has refused it in the past. I guess I could argue she could mix it in with some organic juice...hmmm.

2 teaspoons of unfiltered organic apple cider vinegar (shake bottle vigorously first)
8 oz. water
Squeeze of lime
honey
Stir


Twice per day. Mix it up and chug it, then chase it with some water.

 

[Birdlady]

I recommended it to her since I used it, too a few years back. The taste is horrible, but if mixed in water, it's bearable. It also has a bunch of medicinal uses such as curing dandruff (I used it for several months on my hair and it really helped). I could try and make another push, but she has refused it in the past. I guess I could argue she could mix it in with some organic juice...hmmm.

I don't see how apple cider vinegar is going to cross her blood brain barrier and cure her nerves in the spinal cord either. Sounds like a bunch of good meaning ppl who haven't ever had anything serious wrong with them giving advice. That's what most of the internet is all about... You've got to weed through all of this crap.

I know it can help the gut and topically, but how the heck is going to heal nerves. Someone want to link some studies to back this up?

Start researching. That's all I can really tell you. In google if you click on the more tab and then go down to the scholar section, that is where you will find medical studies/journals. I live in this section of google. Stay the heck away from dumb websites that state "facts" without any facts or references to back up their facts! Also look for others who have cured ALS. There has to be someone out there... People have cured cancer, so... yeah.

I absolutely no where you're coming from. The only advantageous thing so far is that the doctors are universally baffled on how she has made it so long. One even told us that his services would be useful to us, because in his estimation she should have been dead a year already, and if he was wrong about that, he probably couldn't help. I give him credit for honesty.

I thought the same thing. I figured I'd do some Google searches on some natural health websites and I would get some answers, but no. Years later, I feel like I could write a book about what doesn't work so someone else can try everything that's left. Was the mercury/heavy metals testing how you found out about your high heavy metal levels? Is the NutraEval test expensive and what were your results? I did a bit of research after I saw your post and it looks extensive in the way of getting all of the blood taken, but I'm sure my mom wouldn't have much of a problem doing that.

Well I had a ton of amalgams in my mouth, so deep down I knew I had issues but I had no idea the extent of the poisoning. Yes the NutrEval is expensive if you aren't covered under their payassured program. I only paid $150 with this program but the actual cost would have been about $1800. If you did digging on the test in google you probably found my blog and my forum posts where my results are posted. It is long and confusing. I don't know if I'd recommend it unless you were going to see a doctor who knew what it meant. What was suggested to take actually made me sicker...lol I talked to a mitochondrial doctor about it all and she said some of the results were of concern. I could have a mitochondrial disease, but I don't have the money to pursue that right now. We are talking thousands and thousands of dollars of invasive tests like a muscle biopsy.

My doc charges like $250 for the first appointment which is over an hour long and then $120 for a 45 minute appointment after that. Don't go to these insanely expensive docs...This is without insurance btw as my doc doesn't accept it. All the good ones don't!

 

[BuddyRey]

TCE, forgive me for bumping this thread but I just wanted to say I hope your family is doing well and we're all rooting for you guys.

 

[donnay]

As the title says, my mom was diagnosed with ALS two days ago and the medical community has effectively said she's screwed. If anyone has any experience with this or knows anyone who had, I would appreciate it. Thanks in advance.

This is pretty much all I have found on alternative methods: http://www.naturalnews.com/028734_ALS_remedies.html

I am very sorry to hear this, I will keep your mother in my prayers. Here is some information from a doctor I trust.

Vitamin E May Stave Off Lou Gehrig's Disease
http://www.american-nutrition.com/als.html

Mon Dec 13, 6:10 PM ET
Health - Reuters

NEW YORK (Reuters Health) - In a new study, regular users of vitamin E were at decreased risk for death from Lou Gehrig'sdisease (news - web sites), also called amyotrophic lateral sclerosis (ALS), compared with nonusers.

Given that vitamin E is an antioxidant, the new findings support the hypothesis that oxidants play a key role in the development of ALS. Moreover, the results are consistent with earlier findings showing that increased brain levels of vitamin E seem to delay the onset of ALS in lab animals. Still, use of another antioxidant, vitamin C, seemed to confer no protection against ALS, the report in the Annals of Neurology indicates.

In the study, Dr. Alberto Ascherio, from Harvard School of Public Health in Boston, and colleagues analyzed data from nearly 1 million subjects enrolled in the American Cancer Society (news - web sites)'s Cancer Prevention Study II. All of the subjects were at least 30 years of age when the study began in 1982. Information on vitamin E use was collected at enrollment and the subjects were followed from 1989 through 1998.

During follow-up, 525 deaths from ALS were recorded, the investigators note.

Compared with nonusers, patients who took vitamin E for less than 15 days per month did not reduce the risk of death from ALS.

However, patients who used vitamin E for 15 or more days per month for at least 10 years had a reduced risk of ALS death of 62 percent. As noted, the use of vitamin C, even on a regular basis for many years, did not protect against ALS.

As to why no benefit was seen with vitamin C, the authors believe it may be because vitamin C is "a water-soluble antioxidant with different properties than vitamin E and thus may not" act the same in the body.

Further studies are needed to confirm the apparent anti-ALS effect for vitamin E, the authors note. Also, because most cases in the current study occurred spontaneously, it remains to be determined whether or not a relationship exists for hereditary ALS, they add.

SOURCE: Annals of Neurology, November 2004.


http://www.youtube.com/watch?v=yIuAvFett0w

 

[tttppp]

As the title says, my mom was diagnosed with ALS two days ago and the medical community has effectively said she's screwed. If anyone has any experience with this or knows anyone who had, I would appreciate it. Thanks in advance.

This is pretty much all I have found on alternative methods: http://www.naturalnews.com/028734_ALS_remedies.html

Try chinese traditional medicine (acupuncture and herbs). I think there is a good chance it will work. I wouldn't waste your time with western medicine. They've pretty much given up on it.

 

[TCE]

Man, so much has happened since August of last year on this subject. I didn't want to bump this thread because it is not a fun read. My Mom is still alive, even though she has no idea how.

Donnay: We've tried all different types and variations of Vitamin E and different doses to boot over a period of about two years. It seems to have no impact. Same thing with all other vitamins throughout the spectrum. The only vitamin that has any measurable effect is vitamin D, and the effect it has is making her inexplicably and uncontrollably itchy.



To keep everything as short as possible: The more time that goes by, the less we all think she actually has ALS. If she does, indeed, have it, then it is one of the strangest cases ever recorded. We are now considering, of all things, a psuedo-low-carb diet on the advic. She suspects she has some form of diabetes. Looking up the symptoms, it is certainly possible. She has every single one. It makes sense because of all the sweets and sugar she eats. Everyone, my Mom included, figured she was going to die soon anyway, and thus, may as well indulge on as many sweets as possible, but we may be in for a big diet change.

 

[GunnyFreedom]

You and your mother are still in my prayers

 

[donnay]

Man, so much has happened since August of last year on this subject. I didn't want to bump this thread because it is not a fun read. My Mom is still alive, even though she has no idea how.

Donnay: We've tried all different types and variations of Vitamin E and different doses to boot over a period of about two years. It seems to have no impact. Same thing with all other vitamins throughout the spectrum. The only vitamin that has any measurable effect is vitamin D, and the effect it has is making her inexplicably and uncontrollably itchy.



To keep everything as short as possible: The more time that goes by, the less we all think she actually has ALS. If she does, indeed, have it, then it is one of the strangest cases ever recorded. We are now considering, of all things, a psuedo-low-carb diet on the advic. She suspects she has some form of diabetes. Looking up the symptoms, it is certainly possible. She has every single one. It makes sense because of all the sweets and sugar she eats. Everyone, my Mom included, figured she was going to die soon anyway, and thus, may as well indulge on as many sweets as possible, but we may be in for a big diet change.

Vitamin D3 is a powerful supplement, but it works better when the person taking it has good cholesterol. I eat a lot of animal fats and good saturated fats to help the vitamin D in my system to build up my immune system. Good cholesterol is key with taking Vitamin D3. I specified D3 because D2 is not good.

More info:
http://www.livestrong.com/article/500983-vitamin-d-and-cholesterol/
http://www.livestrong.com/article/490596-vitamin-d-deficiency-low-cholesterol/


Dr. Glidden works with Dr. Wallach and this is what he has to say about Diabetes:

Type 2 diabetes is a nutrient deficiency disease. It is NOT genetic! Your body needs vitamins and minerals to open doors on the walls of your cells to let the sugar molecules in. When your body runs out of these nutrients, the doors on the cell walls stay shut, the sugar piles up in your blood stream, and you get Type 2 Diabetes. Once the nutrient deficiencies are eliminated with medical nutrition, the doors open up again, and your body metabolizes its sugar without any problem what-so-ever.

Because medical doctors have NO training NOR any clinical experience with medical nutrition, they are clueless to this treatment. All that they have been trained in is the delivery of drugs (in this case, insulin, humalog, etc). If all that you have is a hammer, everything looks like a nail...Dr. Peter Glidden

http://drglidden.com/type_2_diabetes

Listen to the video interview:
http://www.doctorsaredangerous.com/dr-peter-glidden


http://www.ksco.com/dead-doctors-dont-lie/28975-dead-doctors-dont-lie-program-23-march-2012

 

[Barrex]

As someone who got no medical training or advanced knowledge about it I can only offer best wishes to you and your family.

Our family doctor would always say eat healthy. No matter what illness/disease (flu, broken bones etc.)... many of illnesses that are common and often in western world are rare or almost non existent in countries where there is no mass production of food and everything that goes with it like pesticides, herbicides, animal antibiotics, GMO, heavy metals, E/xxx/ and thousand other poisons that are present in mass produced food. Eat eco, organic, healthy, natural. This will probably not cure you mother but it will strenghten her body and get rid of all those poisons.

 

[rpwi]

Try AIM. It is electronic homeopathy. It will work.

http://www.aimprogram.com

The idea is that all of matter exist in states of vibration. There are techniques of diagnosing ailments based on these vibrations. It sounds fantastic, but is true. It is entirely in line with quantum mechanics. Homeapathy works by introducing elements/substances that have a similar vibration to the illness as a slight irritant. Almost like a vaccine, the body addresses the new vibration and in turn fixes the larger disease vibration which shares the same disease frequency.

Of all 'natural cures'...this is THE BEST AND MOST EFFECTIVE. EMC2 is much more effective than homeopathy because it addresses the vibrations directly and using computers. People on 'AIM' have been treated for ALS.

Now AIM targets a large number of frequencies besides ALS. I went on it for fun...and a dime sized ugly looking mole I had on my leg for over a decade started mysteriously scabbing up and shrinking. After a couple of weeks it was completely gone...with no scar. I was quite stunned... There are plenty of testimonials a lot more significant than my end. Phil Jackson and a number of celebrities are on the program. In fact, Phil had the entire Laker team on the program he was told by higher-ups this wasn't accepted (which was stupid of course).

 

[angelatc]

Man, so much has happened since August of last year on this subject. I didn't want to bump this thread because it is not a fun read. My Mom is still alive, even though she has no idea how. .

We aren't here for the fun. We want you to bump this.

 

[TCE]

For Legal Purposes: I am not a doctor, I have zero degrees in medicine, and this is only based on experience. In any case, onto the distillation of the past year:

Since last year, my Mom has tried a few different medications all subscribed by different physicians. The gist of it is the "cure" is worse than the disease. More accurately, the "cure" only worsens the disease. My Mom would experience severe side effects from each and every medication prescribed for her. The first time she was allergic and her face got incredibly red and swollen and she was having extreme trouble moving. So, she was switched to a different one. All of these were either to help her movement, help her breathing, and/or extend her life. Without going through the gruesome details, each and every pill made her worse. One made it so she would have horrible stomach pains and bowel movements frequently. Another one I suspect she was allergic to, and yet another caused extreme stiffness and a general worsening of all her symptoms. She never got quite back to how she was before the prescriptions. Moral of the story: carefully consider the side effects of a drug before taking it. They're not kidding.

For everyone not up to speed, we have tried chlorella (allergic), spirulina (allergic), cilantro (no effect), mass doses of every single vitamin under the sun (no effect), a gluten-free diet (no effect), fish and krill oil (very minimal effect), Wobenzyme (no effect), colloidal silver and gold (no effect), and at least 10 to 15 other natural remedies that I can't bring to mind. Pretty much, if it supposedly helped anything even remotely relating to anything my Mom had, we tried it.

Out of everything we have tried, only three remedies have helped: Detrol, which decreased the frequency with which she has to use the restroom. Glucosamine/Chondroitin/MSM: Helps her stiffness and lack of mobility slightly. It is noticeable when she stops taking it. And Nopalea. Nopalea also helps her slightly with movement. Ironically, it looks like a complete and total scam when I watch the infomercials on television. Never in a million years did I think it could help, but hey, go figure. She has been taking it for over a year and when she stops, it is noticeable.

As another tip to anyone suffering from a somewhat rare disease or even one where there is "no cure," and this comes from not only my experience with my Mom, but from a friend of mine as well: If there is an expert in the field, he will charge you thousands of dollars, but only tell you what you already know, that the disease you have is incurable and that there is nothing he can do. However, he can prescribe medications that will alleviate some of the symptoms, but, as has been mentioned, with horrible side effects. Thus, thousands of dollars over the countless visits will be thrown away and nothing new is ever learned. These doctors, however, are often incredibly wealthy since they are an extreme minority. As an example: There is a doctor at a hospital that shall not be named who researches Ataxia. He is one of only a handful of doctors who has degrees in the field. He is booked solid for months and makes quite a bit of money.

Presently: My Mom has extreme difficulty moving and she is so unsteady that she can only move with someone holding her up. She moves very slowly and can only write with her right hand as it opens slightly. Her left hand and her left side have almost completely shut down. Her breathing is strained and she has to work to take a breath. She is confined in her room virtually every hour of every day because she can't get out. Someone has to wash her up everyday because she can't do it herself. She has to be taken to the bathroom and fed. She can only be outside for a few minutes before she starts to have heat-induced attacks.* She has given up all hope and does not want to live any longer. She thinks she only have a few months left, but none of us have any idea. She can barely swallow, so she is limited in the amount of pills she takes a day. The exhaustion from going to a million different doctors and trying a million different remedies has gotten to her.

Essentially, I take care of her for 12 hours a day and my Dad takes care of her the other half of the day. I have complete college, and luckily, like a good lover of liberty, I didn't take out huge loans for school and everything was in budget. Unfortunately, I can't actually get a job because of how much time has to be devoted to taking care of her. I don't mind in the interim, since I'm not going to throw my Mom to the proverbial wolves in terms of care**, but I know it is going to be difficult explaining to an employer in an interview one day why, after school, I decided to only have a part-time job for a while and I have no internships. So that is my story. I am sure I am leaving out things.


* Even though it is in a different context, Birdlady explains the phenomenon here:
** This is a whole topic that I could write pages on. In short: We have gone every possible route of finding care for her, and none of them are sufficient. The stories I have are almost unbelievable. Had I not witnessed it myself, I would not believe my stories.

 

[angelatc]

I can't even begin to tell you how much I respect you right now. You are the living, breathing definition of "manning up."

I just wish you and your family didn't have to go through this.

 

[Birdlady]

@TCE
I am soo sorry to hear this. Reading your post, I nearly broke down because I know what it is like to be told to do this and that and yet have nothing helps...I'm no where near as bad as your mom. I can't even begin to understand what she is going through, but I do understand what it is like to have a chronic/incurable illness. Many people mean well, but they have a hard time understanding that taking vitamins, supplements or some weird concoction is not the cure for every ailment. Lots of people on this very forum are guilty of it and I like calling them out...

I don't really have any advice for you and I'm sure you've done so much research your head is spinning with unnecessary knowledge. lol

The reason I have no advice is because I've been trying to fix myself for over 7 years now and nothing has really helped much. Still have heat intolerance as evident by the video you posted. Thanks btw! I've gone so far down the rabbit hole, I got genetic testing done and I'm pursuing a lead right now and waiting to hear back from various researchers. But at the end of the day, even finding out I have a genetic mutation, doesn't help me feel any better. I keep going back and forth...Is it really worth the money, time and agitation of seeing doctors. I don't know anymore... I completely understand how your mom feels.

I was never much of a spiritual person, but in the past 6-8 months things have changed for me. Take your mother to healing services and have people lay their hands on her. God can heal. I know of a woman who was healed of the very condition I have! If you are open to the idea, check out Dan Mohler on Youtube.

Be sure to take some time for yourself. I know that's hard, but keep your own strength up. God bless you and your family.

 

[TCE]

Hey BL, I would have actually been a member of the vitamin and supplement crowd a few years ago before I tried everything known to man and nothing helped my Mom. I have tried some supplements on myself for everyday use and I can report that some supplements actually do what they say they're supposed to, but on the whole, it appears that alternative therapies are not the magic bullet for every ill. Everything must be looked upon with skepticism until it has been shown to work, in your case, especially with iodine!

I absolutely know where you're coming from. After reading article after article combined with books, audio, video, etc, I have serious ALS-research fatigue.

As I said above and on a +Rep, I do read your blog and keep up with your story/videos. I especially enjoyed your ironic Evanescence cover. I hope you do keep fighting and find something, anything, that helps.

EDIT: My favorite video of yours, would be awesome to here more about your personal life/husband:

 

[anaconda]

I can't even begin to tell you how much I respect you right now. You are the living, breathing definition of "manning up."

I just wish you and your family didn't have to go through this.

My thoughts exactly. Helping your Mom will bring you great peace of mind well down the road, in addition to the great asset it is to her presently.

I just saw this thread this evening for the first time. I glanced through and I didn't see any mention of Stephen Hawking. I wonder if his case warrants some inspection? He was diagnosed over half a century ago and is apparently still doing cutting edge physics.

http://en.wikipedia.org/wiki/Stephen_Hawking

 

[rp4prez]

Just got back from the kick off for this.

http://web.alsa.org/site/PageServer?pagename=WLK_landing

They are awesome.

 

[farreri]

The The Healing Codes business partner used that techniques to cure his Lou Gehrig’s Disease...


Dr. Ben Johnson’s Reply on Lou Gehrig’s Disease (ALS)
http://www.thehealingcodes.com/FAQs/bensreplyonals.htm

How Dr Ben Johnson Overcame Lou Gehrig's Disease
"After only three months of practicing this revolutionary new therapy, my Lou Gehrig’s Disease was 100% gone. I have been symptom-free since March 2004"
http://www.naturalhealthnz.net/lou-gehrigs-disease.html


That techniques is listed in my comprehensive energy psychology thread here.