Introduction and whats working for me

[Terry]

I've always been fairly athletic. Swam for a division 1 college swim team. Raced bikes for a number of years. Ran a bunch of mini-marathons (not competitive). About 3 years ago I noticed I could not get back into shape. I could only run about 100 yards before being winded. So I'd walk a 100 and run a hundred for 2 miles. I did that for a couple of summers and didn't make any progress.

So I bought a recumbant excersice bike and worked up to 45 minutes a day - 6 or 7 days a week. And gave up trying to run with the girls travel soccer team I coach.

By last winter the biking was still going fine but I was so short of breath I could hardly make it thru a sentence. I'm a CPA and am a partner in a practice with my wife Karen. After tax season went to see my GP. That started a series of appointments with lung and neuro specialists culminating in a diagnosis of bulbar ALS on August 12. I could hardly communicate and my lung expansion was at 45%. I was choking about every meal.

I've always been a jokester and the same with my buddies. Within 2 days those guys had me laughing and more importantly eating again. I'd fought off the first wave of depression. One of those guys found Eric's site and that gave me some hope.

The next day I got into a Chiro client of mine who did a laser treatment and I started taking Ionizer foot baths 3 times a week.

I embarked on the no "everything that tastes good" diet and haven't fallen off that wagon. Within a week I had an appointment with the local Alternative Medicine MD. He put me on these supplements:

Mitocondrial Energy Optomizer
Fish Oils
NAC
COQ10
Green tea

It took some serious will power to choke down those horse pills. Within a week the nagging cough I had was gone. Within 2 weeks the choking stopped. I still choke about once a week.

I started eating 3 snack-sized yougurts every day and the worst of Irritable bowel syndrome was gone.

The next week the ALT Med MD started glutathione IV pushes twice a week. Eric's Glyconutrients came in the mail. I couldn't handle the taste so I bought a capsule maker. I'm taking 8 capsules a day.

I started accupuncture (on my ear) a couple of weeks ago. And it makes a whale of a difference in my diction and voice quality. to be continued...

 

[Terry]

I'm still working.

I cut back on the bike to 25 - 30 minutes 6 or 7 times a week. (I'm afraid I'll lose too much weight) 6' 187 lbs. down from 224.

I just started on a new supplement from my ALT med MD drink mix. Its got creatine, niacin and taurine. Started a chelation treatment (oral edta) on Friday.

In 6 weeks I can talk again and sing in church. I don't belt out the oldies like I did when I was in swing choir in high school but I can follow along with the melody. That's one of life's little joys.

I did a test of lung expansion @ the Neuro guy's office. Take a deep breath and count until you run out of breath. I hit 13 on August 12. I hit 28 the other day. Not having the nagging little cough might make that difference.

My staff say my posture is better and Karen says it doesn't sound like my breathing is labored when I'm sleeping.

I feel like I'm getting stronger every day.

Terry
Southern Indiana

 

[Mike27]

Sounds good!
Couple of questions for you;

In your list of vitamins and such, what is NAC? Also what is a glutathione IV push?

Cheers!

 

[Terry]

I'm at the office so I'll have to get the label at home on the NAC. The glutathione is an injection I get at the Alt Med MD's office. It's some kind of substance your body produces that cleans out toxins.

I'm also in the middle of EDTA chelating therapy. The Alt Med MD said 6 months to a year of that.

It feels like my core is fighting off some of the ALS attack. I'm seeing some muscle mass loss on my thumbs. My Chiro has a laser treatment that he's been doing on my core that we'll try on the thumbs. I'll let you know how that goes.

I'm doing work with dumbells on my forearms and hand crunchers with a stress potato sponge. I'm seeing increased muscle mass in my forearms.

 

[Mike27]

Thanks Terry,
If I could add something to your list, maybe look at creatine as well. There were some very positive studies done that say that supplementing with creatine may slow the progression.

There are a few on this forum that use it, myself included.

Cheers!

 

[Terry]

Thanks Mike:

Just started a new supplement with creatine called Mito Boost 1. Its a drink mix.

I'm also on Rilutek. I'm half afraid to go off it.

If you find anything else that seems to work, let me know. I'll try anything.

I'll keep you posted on what is working.

 

[ronrfc]

Whats working for me

Hi Terry I was diagnosed with Bulbar ALS on August 15 2005. I am currently taking Rilutek, anti depressants, gabapentin and my own brew of Co Q-10, Methyl B12, Beta Carotine, Vit C, E and Selenium. I have one question what is Mitocondrial Energy Optomizer I cannot find any reference to this on the Web.

 

[ronrfc]

gabapentin and L-threonine

Terry I think your spelling of Mitocondrial might be a bit off the Lef site can't find it, I found it anyway so no sweat. The gabapentin is for my muscle twitches I got from my Nero.Here is an article I found you might be interested in:

Amino-Acid Studies Raise Hopes: Nutrients May Reduce ALS Problems
Symptomatic improvements in some patients with amyotrophic lateral sclerosis (ALS) have been confirmed in new studies conducted by Bernard M. Patten, M.D., F.A.C.P., Baylor College of Medicine, Houston, Texas.
In the ten-month study, Dr. Patten gave 15 ALS patients L-threonine, an amino acid, doses from 2 to 4 grams daily with no ill effects. Some patients noted improvement within 48 hours including better voice, swallowing, less drooling, increased energy and improved spasticity. The changes occurred more dramatically with those most severely affected.
Substitutions of amino acid leucine or isoleucine as placebos caused the patients to revert to their previous status. A return to L-threonine caused improvements in some of the physical manifestations of ALS.
In summary, of the 15 patients, seven made a definite improvement, three had minor improvement, and the remaining five experienced no change at all.
Mt. Sinai Medical Center in New York City is also conducting a clinical trial of a combination of three amino acids -- protein building blocks -- in an attempt to treat ALS. This study will involve some 100 volunteer patients over 3 years.

 

[upila]

NEUROTONTIN (Gabapentin): the drug has an affect on the glutamate, a natural amino acid in the brain and a normal part of us, which tends to be too thick in ALS patients and is toxic to motor neurons. Gabapentin is known to thin this glutamate to what is hoped to be helpful.

Acetyl-L-Carnitine: Improves nerve conduction velocity, retards decline of Nerve Growth Factor Receptors, stimulates and maintains growth of neurons within the brain, inhibits degeneration of neurons, reduces spasticity. Works best when in combination with Alpha-Lipoic-Acid.

N-Acetyl-Cysteine: While many report benefits taking it, many others have dificulty tolerating NAC. Among some if it's purported benefits is the liver detoxification quality alone, or in combination with other herbs.

==========
My father is on a cocktail which includes the above, and twice he tried adding NAC, but was forced to stop it. NAC and grapeseed we found, if taken in combination with other strog antioxidnats may have adverse effect. It seems, there are so many "good" supplemets that one is tempted to take all of them, but the body/liver obviously can process only so much. Use caution not to shock your system.

 

[rcharlton]

Hi Terry,

Your story sounds similar to mine...I was always very active...swam with a masters club and biked extensively...

I was diagnosed with ALS in June of 2005...

I'm still focused on my diet - but have eased off the detox.


You seem to be having success with your treatments - so I would not want to dissuade you from following this regimen...but it just looks like your ALT Med doctor will be into you for thousands of dollars this year.

It looks like your Alt Med Dr. is recommending some promising supplements - but why is he/she recommending the EDTA oral chelat? I spoke with a few of my friends who are medical doctors and specialists in internal medecine. They advised me that EDTA is a drug designed to treat iron, aluminum or lead toxicity. Is there any evidence that you have high levels of these elements?

If your ALT Med Dr. has obtained a hair analysis - just for kicks I would recommend sending another hair analysis to a different clinic to see if the results are the same. There is a lot of controversy about the legitimacy of hair analysis - so it would be worth the $100 to do a second independent test in view of the amount of money you appear to be spending on treatment.

I'm still a newbie myself and learning more and more about this insidious illness everyday…so I can’t really offer much advice…however the one piece of advice I would give you is to advise you that Eric Edney is not the only one who has survived with ALS for an extended period of time. There are many others who have survived with ALS for 10 years and longer - some of whom are members on this web site. Some long term survivors follow a strict regimen while others don't appear to do anything out of the ordinary. It seems to me that the only common denominator among these people is their positive attitude and that they just get on with their lives the best that they can.

So in any event...you are on the right track...

 

[Terry]

rcharlton:

Thanks for the link to the other thread. Interesting info.

Recently I've been receiving laser treatments on my hands. That significantly increases my thumb and little finger strength for about 3 days. I'm getting laser treatments twice a week.

I'm considering buying a laser and leasing it back to my Chiro buddy. He'd have a second unit to use in his practice and I could use it whenever I needed.

I use a rocker board every night while watching TV to improve my coordination. I'm getting better at it. My kids have started using it also. That could help them prevent ankle injuries.

 

[upila]

Hi Terry,
Could you plese provide more information regarding the "laser treatment?" If you can purchase it yourslef - what is it and what should I be looking for? Do you have a site I can check out? Thanks!

 

[Terry]

I got the Lyme Disease test back today. I 'm showing positive for Lyme. Lyme often times mimics the symptoms of ALS. I'm showing improvement. That infers Lyme.

Dr Steve was pretty excited.

But it could be I have both. Dr Steve said that is not likely.

I start alternative Lyme treatments Thursday. I'm shopping for an infectous disease MD as we speak.

This could be really good news. I'm cautiously optomistic.

Doesn't mean I'll abandon you guys. There seems to be a link between ALS and Lyme. I'll continue to post what's working for me.

Terry

 

[Terry]

Sometimes its the simple things.

I'm having reduced muscle cramps after a glass of V-8 juice every day.

And between a couple glasses of Welches grape juice and the yogurt the Irritable bowel has gone away. I find it easier to swallow supplement pills using the grape juice. Probably because I like it.

 

[Al]

Hi Terry. Have never tried the V8 and others here might say it's loaded with MSG and salt but if it works for you keep doing it. We're all different and what works for one might not work for another but on the other hand it just might.