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Lou Gehrig's Disease ALS-SOS!

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Posted on Wednesday, May 16, 2001 - 4:44 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I posted -or at least thought I posted a couple weeks ago regarding a friend who has been diagnosed with ALS-this friend is a Latin male. As we know, a lot of Latino people eat a lot of Goya products(sazon is a packet of almost 100%msg, it is added to rice and beans and is a daily staple for a lot of Latin and Latin Americans)-Goya products are loaded with MSG. My first thought is that he may have adversely affected by years of ingesting tons of MSG on an almost daily basis. Has anyone heard of remission from ALS-or holistic treatments to slow the progression of this disease. My friend is very depressed and if I can offer him a shred of hope -it would make me very happy. SOS
Judy T
Posted on Wednesday, May 16, 2001 - 7:18 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I do not like being the messenger of bad news. A friend of mine died this year from ALS. Limited study on my part indicates death occurs, on average, 3-years from diagnosis. Unfortunately there was no treatment that helped her. This disease has understandably been one of my greatest fears. Another of my friends courts danger with msg by challenging, or seeing just how much he can injest, without a reaction. I am fearful and stay away from it. ALS, Alzheimers, Huntingtons, Parkinsons...all tragic, horrid diseases. Please, anyone, if you have heard of any treatments that may halt ALS, I too would like to hear.
Deb A.
Posted on Wednesday, May 16, 2001 - 9:09 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Avoiding glutamate certainly would be a positive step. With ALS, there has been much degeneration already. I'm sure you are searching for answers for your friend. Don't forget faith, hope, and prayer. They can be powerful allies. I have seen the ingredients in Goya products and they are deadly. Beans and rice make up the diet of many Latino people. The glutamate makes these simple and sometimes boring foods tastier AND harmful. The Panamanian friend who just visited us, is also a cook, and he refused to make us rice and beans because, as he said, "I can't make them taste good without MSG". Well, I can make them with lots of garlic and onion, and they are very tasty. What a shame we have come to rely on what the food industry has conned us into thinking is necessary for good eating.
Is there some way that you can help your friend avoid glutamate? Many recent news articles blame too much glutamate in the brain as a cause for ALS and Parkinson's.
Tom Fernstrom
Posted on Thursday, May 17, 2001 - 6:30 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dear Anonymous,

Dr. Blaylock states;

"While MSG and aspartame are probably not causes of the neurodegenerative diseases, such as Alzheimerís dementia, Parkinsonís disease, or amyotrophic lateral sclerosis, they may well precipitate these disorders and certainly worsen their effects. It may be that many people with a propensity for developing one of these diseases would never develop a full blown disorder had it not been for their exposure to high levels of food borne excitotoxin additives. Some may have had a very mild form of the disease had it not been for the exposure."

Whether Dr. Blaylock states it this way because he has no clinical (study backed) proof that Excitotoxins may actually cause these diseases or he truly believes that these Excitotoxins may just aggravate the disease is hard to interpret. But truly avoidance of these excitotoxins by your friend and possibly supplementation of Magnesium, Taurine, Vitamin B and CoQ10 might prove beneficial.

Dr. Blaylock goes on to talk about these supplements;

"Recently, it has been shown that when striatal neurons (those involved in Parkinsonís and Huntingtonís diseases) are exposed to microinjected excitotoxins there is a dramatic, and rapid fall in energy production by these neurons. CoEnzyme Q10 has been shown, in this model, to restore energy production but not to prevent cellular death. But when combined with niacinamide, both cellular energy production and neuron protection is seen. I would recommend for those with neurodegenerative disorders, a combination of CoQ10, acetyl-L carnitine, niacinamide, riboflavin, methylcobalamin, and thiamine.

One of the newer revelations of modern molecular biology, is the discovery of mitochondrial diseases, of which cellular energy deficiency is a hallmark. In many of these disorders, significant clinical improvement has been seen following a similar regimen of vitamins combined with CoQ10 and L-carnitine. Acetyl L-carnitine enters the brain in higher concentrations and also increases brain acetylcholine, necessary for normal memory function. While these particular substances have been found to significantly boost brain energy function they are not alone in this important property.

Phosphotidyl serine, Ginkgo Biloba, vitamin B12, folate, magnesium, Vitamin K and several others are also being shown to be important.
While mitochrondial dysfunction is important in explaining why some are more vulnerable to excitotoxin damage than others, it does not explain injury in those with normal cellular metabolism. There are several conditions under which energy metabolism is impaired. For example, approximately one third of Americans suffer from what is known as reactive hypoglycemia. That is, they respond to a meal composed of either simple sugars or carbohydrates that are quickly broken down into simple sugars (a high glycemic index.) by secreting excessive amounts of insulin. This causes a dramatic lowering of the blood sugar.

When the blood sugar falls, the body responds by releasing a burst of epinephrine from the adrenal glands, in an effort to raise the blood sugar. We feel this release as nervousness, palpitations of our heart, tremulousness, and profuse sweating. Occasionally, one can have a slower fall in the blood sugar that will not produce a reactive release of epinephrine, thereby producing few symptoms. This can be more dangerous, since we are unaware that our glucose reserve is falling until we develop obvious neurological symptoms, such as difficulty thinking and a sensation of lightheadedness.

The brain is one of the most glucose dependent organs known, since it has a limited ability to burn other substrates such as fats. There is some evidence that several of the neurodegenerative diseases are related to either excessive insulin release, as with Alzheimerís disease, or impaired glucose utilization, as we have seen in the case of Parkinsonís disease and Huntingtonís disease.
It is my firm belief, based on clinical experience and physiological principles, that many of these diseases occur primarily in the face of either reactive hypoglycemia or " brain hypoglycemia". In at least two well conducted studies it was found that pure Alzheimerís dementia was rare in those with normal blood sugar profiles, and that in most cases Alzheimerís patients had low blood sugars, and high CSF (cerebrospinal fluid) insulin levels. In my own limited experience with Parkinsonís and ALS patients I have found a disproportionately high number suffering from reactive hypoglycemia.

I found it interesting that several ALS patients have observed an association between their symptoms and gluten. That is, when they adhere to a gluten free diet they improve clinically. It may be that by avoiding gluten containing products, such as bread, crackers, cereal, pasta ,etc, they are also avoiding products that are high on the glycemic index, i.e. that produce reactive hypoglycemia. Also, all of these food items are high in free iron. Clinically, hypoglycemia will worsen the symptoms of most neurological disorders. We know that severe hypoglycemia can, in fact, mimic ALS both clinically and pathologically. It is also known that many of the symptoms of Alzheimerís disease resemble hypoglycemia, as if the brain is hypoglycemic in isolation."

Hopefully with your help, your friend can take a more active role in his own health education about this disease. I have a nephew who has MS in the early stages -- he has always been sensitive to MSG, but because of family tensions, he has been advised not to listen to his "Harebrained Uncle" about these Excitotoxins.
Tom Fernstrom
Posted on Thursday, May 17, 2001 - 6:32 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I meant to say Dear Adam -- Sorry.
Deb A.
Posted on Thursday, May 17, 2001 - 8:49 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I've also read that the pumps that usually remove glutamate from the brain, are not efficient in ALS as one theory of it's cause. Didn't Carol once say that the cause for these impaired "pumps" is a lack of glucose in the brain caused by a hypoglycemic condition basically brought on by too many excitotoxins (and of course, our high gluco-index foods)in the diet? It all makes sense from what you have quoted from Dr. Blaylock. Don't feel bad, Tom. Most of us here are considered "Harebrained aunts, uncles, moms, dads, sisters and brothers" one time or another! Too bad we're right about the real cause for so much suffering. And too bad so few are listening.
Posted on Thursday, May 17, 2001 - 10:00 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Thank you so much for the information, this at least gives me some hope. Thank you for all the kind words everyone-you are wonderful people.
Carol H
Posted on Thursday, May 17, 2001 - 4:32 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Adam, after reading in the New Yorker magazine about the founding of the ALS Foundation, and the new glutamate blocking drugs, I wrote a letter recommending that they should investigate the use of taurine. Here was the response:

From: "Elizabeth McEnany"
Subject: ALS Therapy Development Foundation
Date: Fri, 3 Mar 2000 15:24:14 -0500

Dear Ms. Hoernlein,
James Heywood has forwarded me your email to him on taurine. Thank you very much for taking the time to send us this information. I am adding it to the FDA 2000 list. This is a list substances/drugs that is being tested a high throughput screening assay at Harvard. The following briefly describes this program:
FDA2000 Project
The brainchild of Dr. Steve Gullans, the FDA2000 project is a direct answer to the question: what can we do now to discover drugs that may help ALS patients today? The FDA2000 project is a library and database of FDA approved compounds that can cross the blood-brain barrier.
Though simple in concept, the FDA2000 project is immensely important because compounds that are shown to be effective in high throughput screening or that have genetic signatures that are predicted to help in ALS can be given to patients immediately. This is because the compounds have already been through FDA testing and are approved for human use. Though it is not likely that a single approved compound will arrest the disease, it is possible that combinations of compounds may have a significant effect on the diseaseís progress.
Thank you again for the information.
Lizzie McEnany

Elizabeth McEnany
ALS Therapy Development Foundation
218 Mill Street Newton MA 02461
Judy T
Posted on Friday, May 18, 2001 - 9:24 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Your words help and remind me of those compounds are body needs and may be in imbalance in some of our bodies. Specifically, I am thinking of Taurine. I will take it beginning today. Carol, there are 18 good pages of info on Taurine in Eric Braverman's 1997 book, "The Healing Nutrients Within" (he wrote Hypertension and Nutrition, too). You probably have this and better info. In one section he states, "MSG itself can reduce taurine...". He talks about jaundice..."Newborns fed formula often develop higher levels of bilirubin...when the infant is breastfed or sufficient levels of taurine are added to the infant formula, jaundice is rare". He discusses one family where members did not produce enough of their own taurine and at age 50-60 began showing signs of depression, lethargy, fatigability, sleep disturbances and weight loss and some visual depth perception difficulties. "As the disease progressed, the patients developed symptoms similar to those seen in Parkinson's..."

The one thing against Taurine he says after citing others that "have found that taurine increases some of the effects of insulin. Because insulin can have a hypoglycemic effect, taurine should be given with caution to patients with blood sugar problems. Taurine can inhibit the release of adrenalin from the adrenal gland".

Anyway, it seems 500mg is a typical dosage so I'm trying Solgar. I'll take it from the capsule. Other ingredients: microcrystaline cellulose, vegetable cellulose, vegetable stearic acid, vegetable glycerin, water.

Also, I do the COQ10 100 mg with great success. When I try to stop it, I start to go downhill. I take the Twin Lab Ultra. It is in a capsule, but I pour it out of the capsule into a 1/2 tablespoon of flaxseed oil. Other ingredients: potato starch, gelatin, purified water, silica, crosscaramallose sodium,magesium stearate, MCT. (I guess some of those ingredients are in the capsule). Costs $32 for 30 capsules.

Thank you for your information on ALS. Such a devastation and often for younger adults.
Carol H
Posted on Friday, May 18, 2001 - 2:59 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Judy T, Thanks for the tip about Eric Braverman's book. I discovered the taurine-MSG link in 1992, before I had seen any info linking MSG syndrome and taurine. (It was hard to research back then - it was before the internet.) I will definitely check out Mr. Braverman's book. I have noticed a depressant effect with taurine, since it has the opposite effect of the stimulant MSG. I take it usually before bedtime since it knocks me out. In most of our cases, when we can cannot relax due to an MSG episode, taurine can take some of the edge off. The decrease in adrenaline definitely helps.

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