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captjnye

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Joined
May 9, 2008
Messages
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Loved one DX
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05/2008
Country
US
State
Texas
City
Conroe
Hello,

My wife was just recently diagnosed with ALS, and wondering if anyone has found natural herbal remedies that help with the symptons? I have read and heard that certain people with disabilitating conditions have used natural herbal or health food store tablets that can help improve the patient's symptoms.

Last year she started with a bit of slured speech and falling down. The doctors diagnosed her as having a stroke, and over the course of months she started getting weaker, and her speech was come and go slured.

Now, one year after she was diagnosed as a stroke patient, they say she has ASL or Lou Gerrig's Disease. Along with Fibromialga, restless leg syndrome, I wonder if there is anything herbal or natural that you as viewers or patients may have used to help reduce or improve the symptoms.

I've read how problems, curving of fingers, and have not seen that, but I also wonder if her symptoms could be related to taking weight loss pills, where she lost a lot of weight, that might give the impression of ASL.

A test they did, sticking needles and measuring charges is what made the doctor say she had ASL, but I guess I want to believe he is wrong.

So my question is, any one know of natural herbals that could help? I thought of myabe muscle regenerator stuff, for like body builders, might improve her muscle tone.

My wife is 53.

Any ideas would be greatly appreciated.
 

Diane Rae

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May 7, 2008
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CALS
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US
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Ca
City
Claremont
I would love to hear what anyone has to say on this subject too. I have had 3 people come to me to suggest we seek out natural remedies to at least slow the progression if not cure it. One person has suggested a Dr. in Idaho who deals only in natural medicine. He will do some testing and determine what the cells in your body are missing and get the toxins out if any are in there etc. I don't know what to think. Someone else has told me to go to her chiropractor who will test the blood, urine and hair for toxins and then do something to get rid of the toxins. Someone else has given us a video that I haven't finished watching, but at the end of the video, I think there will be some information on buying their food products, which they promise will make your body healthy. The video did mention ALS and other neurological diseases. As I said, I don't know what to think. The people coming to me with these suggistions are coming to me out of their love and concern for our family and they are not personally tring to sell me anything, but honestly believe that alternative medicine/de-toxing/proper food products etc will help us. Of course I am interested in anything that will help my husband, but we are a little skeptical and don't know what to do.
 

Shatzie

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Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
City
Tulsa
The nurse who is the director of the ALS Clinic where I was diagnosed told me that the neurologist who diagnosed me is a world-reknown expert on ALS who has been researching ALS for 30+ years and if there was anything out there that worked, he would have his patients do it. This nurse's husband was diagnosed with ALS in 1992 and he was told that he had a very short time, because his ALS was very fast progressing. But he lived 13 years going to this clinic and doctor. This is my medication/vitamin regimen:

Rilutek 50mg/2x day
Vitamin C 1000mg/2x day
Vitamin E 1000IU/2x day
Co-Enzyme Q-10 100mg/2x day
Melatonin 3mg at bedtime
 

Shatzie

Active member
Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
City
Tulsa
P.S. The melatonin needs to be sublingual, the kind that melts under your tongue.
 

paybackranch

Member
Joined
Apr 12, 2007
Messages
13
Reason
CALS
Diagnosis
10/2004
Country
US
State
Texas
City
San Marcos
PLEASE be careful with folks approaching you about herbals that will stall, reverse or possibly cure ALS. My husband (who also has fronto temporal dementia along with the bulbar onset form of ALS) was approached by some 'friend' that sold Mannatech who had all kinds of 'testimonies' about how their products would do all of the above. Without my knowledge, he bought over $4000 worth of this stuff. It has done absolutely nothing for him except empty his checking account. Remember, this disease is different with each person. There are plateaus that can last a while without any drug or herbal. It is just criminal that some folks target the desperate like this.

Melanie
 

paybackranch

Member
Joined
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Messages
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Reason
CALS
Diagnosis
10/2004
Country
US
State
Texas
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My husband has the bulbar form of ALS and uses high protein shakes made from muscle builders powder because it has a high protein / calorie count which he needs now that he can only take in fluids. Be careful of high protein, however, because it will cause constipation if taken without lots of fiber. Ask anyone on an Atkins diet which is based on high protein / low carbohydrate !

Jerry mixes the protein powder in his orange juice and vegetable juice.

I have seen no change or slowing down of Jerry's muscle wasting even though he has been taking this stuff almost exclusively for 3 years now. As I understand it, the brain cell dies, the nerve dies and the muscle that is not being stimulated atrophies. He was diagnosed in the fall of 2004 with slurred speech being the first symptom. He was a very physical man, loved to hunt, on the go all of the time (hyper active children DO grow up you know).
We were told that rebuilding the muscles with exercise was actually counter productive as the muscles have great difficulty repairing themselves. I am certainly not an expert, but have scoured every possible bit of information that I can find to try to help my husband.

We go to the ALS clinic in San Antonio, but Jerry was diagnosed at Dr. Stanley Appel's clinic in Houston.

Melanie
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thanks Melanie for your info about the supplement scammers. I try to tell people about them but to hear it from someone who actually tried it speaks volumes about how useless these so called cures are.
AL.
 

captjnye

New member
Joined
May 9, 2008
Messages
3
Reason
Loved one DX
Diagnosis
05/2008
Country
US
State
Texas
City
Conroe
Thank you for comments, and I guess, saving me spending fortunes on stuff that really doesn't work.

I guess we get desperate in times like this, and could easily fall for mircle cures etc.

Thanks so much.

:)
 

paybackranch

Member
Joined
Apr 12, 2007
Messages
13
Reason
CALS
Diagnosis
10/2004
Country
US
State
Texas
City
San Marcos
I don't know if this is the appropriate place for this or not, but there is something that all of us who either have ALS or have a LO who has it................has anyone considered donating their brain and spinal cord for research? My husband has donated his brain and spinal cord to the Boston VA Research Center. That is something positive that can be done so that some other family sometime in the future won't have to go through what we are. There is no cost to the family and it does not affect the viewing, etc. I know that this is a hard subject, but it is one way to help find a cure / treatment. Donations such as this have already helped isolate some causes and made great advances in the diagnosis and treatment for Alzheimers. There is an interesting chapter on this in 'What if its not Alzheimers?' My husband has ALS and fronto temporal dementia.

Melanie
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
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Mobile
Tissue Banking

Melanie,

My brother Tim is going to be a Tissue Banker (brain tissue and spinal fluid) for ALS Research when he passes for the University of Pittsburgh. The body is picked up and taken to nearest major medical center and returned within six hours in viewable burial condition. No Cost.

It is hard for any of us to think about this. But Tim and I discussed it last summer. We have it taken care of and behind us. It will be a significant contribution!.


I will be glad to provide the information to anyone interested.

Lorie
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sunnybrook Hospital in Toronto has the same program. I'll be leaving a couple of pieces of me behind as well.
AL.
 

CindyM

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Learn about ALS
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I am going to do it also. I figure I don't use my brain much so it should be in pretty good condition! :-D
 

paybackranch

Member
Joined
Apr 12, 2007
Messages
13
Reason
CALS
Diagnosis
10/2004
Country
US
State
Texas
City
San Marcos
<<SNORT>>

GOOD ONE CINDYM :)

Melanie
 

majikgypsy

Member
Joined
Aug 21, 2010
Messages
26
Reason
CALS
Diagnosis
11/2009
Country
US
State
LA
City
DeRidder
I heard from a friend that someone drank grape juice (pure not the cocktail) and it put him in remission. I don't know this man, but I am buying some juice and grapes today for my husband.

I have been into herbs for over 25 years now. Valerine Root will help with spasms, though even the pills stink worse than anything I've ever smelled. Chamomile will help with spasms, and also helps you from getting infections and reduces swelling. Chamomile is a great tea and most grocery stores have it in bag form. Goldenseal is a digestive aid and is said to clear toxins. St. John's Wort is an anti-depressant.

I must stress here, tell your doctor about herbs you take, some may cause side effects if you are taking medicines. I have found most doctors do not like people taking herbs. But a good herbalist can tell you if it's ok to take these. There are many herbs to try, but I've listed the ones I have used and know well. Always be careful in dosage, herbs are nature's drugs and you can cause harm if you don't read up on them. I do have a wonderful collection of herbal books if you can't find info.

One remedy I would like to share that has been passed down through generations in my family. For joint pain, take a cabbage leaf and pound it a little (you don't want to break it into pieces, but breakdown the hard veins) place in microwave for 30 seconds (time will vary with microwave). Wrap around the painful joint and then wrap a towel around that. Leave it on until the heat is gone.

I don't know if any of this will work, but the herbal info is from Varro E. Tyler, PhD "The Honest Herbal".
 

majikgypsy

Member
Joined
Aug 21, 2010
Messages
26
Reason
CALS
Diagnosis
11/2009
Country
US
State
LA
City
DeRidder
Oh, sorry, if you really want a doctor who will help with herbs, look for a Naturapathic Doctor in your area!
 
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