My program

[ladave]

In the last six weeks I've read a ton of information about ALS/MND. I now believe I know more about it than most doctors After considering my options, this is what I've decided to do as a starting program, reserving the right to alter or amend it as new information comes to me. I'd really like to thank the participants on this Board (as well as on ALS TDF Forum) who have contributed greatly to my education.

I post this here for two reasons: First, to keep track of my own ideas, and second, to share them in case anyone is interested.

First- Rilutek. I decided to take it. I'm not under some false notion about its' effectiveness, but the studies all show a modest benefit. I have insurance to cover it except a $20/month copay so cost is not an issue. I will monitor liver function closely.

Second-Diet. I've eliminated all soft drinks and anything containing aspartame. I'm trying to limit MSG but so far it doesn't seem possible to eliminate it completely. I believe I've reduced my intake at least 80% from six weeks ago. I'm concentrating on balanced meals with protein and veggies, allowing myself an occasional snack.

Third- Supplements. I have begun a supplement program that includes magnesium and a whole range of anti-oxidants, including R-ALA, Acetl-L-Carnasine, COQ10, ECGC/Green Tea Extract, Centrophenoxine, Grape Seed Extract, B-100, C and E. Also Omega 3-6-9 Fatty Acids, Milk Thistle, and Selenium. Olive-Q-Oil and Poly-Mono-Unsaturated Teel Oil with each meal (as suggested by the homeopathic doctor I saw).

Fourth- Detoxification. I'm taking a foot bath in Bentonite Clay once a week. I'm not prepared at this point to commit to something as radical as removing my fillings, I'm simply not convinced on that score at this time.

Finally, I'm going to stay active as much as possible- exercise including long walks with my dog, pursuing my hobby of partner dancing, regular physiotherapy. I'll cut back if my body tells me to but not until. I will also try to get 8 hors of sleep a night, which I have not always done.

So that's it. We will see how it goes. Hopefully my progression will be slow. Certainly I have already sufferered extensive denervation, but I still have nerves left and will fight like heck for each one of them. Oh, and hope for that miracle, a cure.

 

[MarciaA]

Good morning! The program you're prescribing sounds familiar to me. I'm part way through a book that has similar ideas. I haven't finished the book and am assuming that they are working for the author and certainly hope that they work for you, too! I agree about the fillings. It seems like a touchy procedure and I've heard that with one little slip, you end up ingesting the mercury rather than "just" having it leech into your system. When were you diagnosed? What has your progression been like so far? good luck with your program!

Marcia

 

[ekoozmin]

You go, Dave!

Dave--Sending you lots of positive and encouraging thoughts! You sound very determined to make changes, yet keep up your quality of life. Thank goodness you are not succumbing to the depression and despair that so many patients experience upon hearing the diagnosis. And if you ever do--we'll be here to remind you of the positive energy you do have!

Liz

 

[COlisa]

Your plan looks great. It appeals to my sense of making a list making & being able to address what is in your control. Agree about the MSG being difficult to eliminate from diet. I have always been a label reader, but the hubby is not so attuned to it yet (& he does all the shopping).

Take care!
COlisa

 

[John1]

Dave,

Your supplement regimen is very similar to mine. I have eliminated (knowingly) ingesting msg for at least 10 years (prior to diagnosis but after symptom onset). Not rigorous about eliminating glutamate. The supplements we have in common include:
ALA, COQ10, ECGC/Green Tea Extract, Grape Seed Extract, C and E, Milk Thistle, and selenium. I also take a multi-vitamin, pycnogenol and acidopholus (to counteract minocycline effects) as well as rilutek. Except for the green tea, which I added about 2 months ago, I've taken these for about 5 years. I don't know if they are helping with progression but I'm sure the anti-oxidants and vitamins have been responsible for my not getting a single cold in 5 years. I used to average 2-3 per year. One other prescription I take is allopurinol based on Dr. Appel's belief that it helped with speech. Speech difficulty was my first symptom and I'm still talking fairly well today so I'm staying with it.

 

[ladave]

Thanks for all of the responses and encouragement!

Marcia, my diagnosed. was last month but I have had three years or more of symptoms. My progression has been on the slow side. Currently, I have atrophy in both hands, some weakness in both arms, and fasciculations in all regions. Per the EMG I have both "active" and "chronic" denervation with "increased recruitment" (which I've since learned means reinnervation of muscles by healthy nerves which adjoin dying nerves) in all regions, more upper than lower. My walking is still unaffected, as is my speech and eating. Hand function is quite limited.

John, I've heard about allopurinol but my speech is unaffected at present so I don't think it would be helpful. I'm not taking minocycline, since the studies I've read don't seem to justify it.

One other thing I should note is that I am taking Celexa for mood stabalization and mirtzapine for sleep. The combo of mirtzapine and rilutek leaves me a bit tired so I'm hoping I can reestablish a good natural sleep cycle and discontinue the mirtzapine. The diagnosed. threw me for such an emotional looop, though, that these meds have been a godsend, without them I doubt I'd be functioning much at all right now so soon after the diagnosed.

 

[ladave]

I wanted to add that EGCG/Green Tea Extract is something I'd encourage any PALS who is on a supplement regimen to consider, as it showed great promise in an ALS-TDF mouse model study. The ALS-TDF mouse models are far more rigorous than other mouse models, besides which this is an inexpensive supplement with no known side effects. The ALS-TDF mouse study is here:

http://als.net/articles/articleDetail.asp?articleId=4438

 

[John1]

Dave,

The mouse study on EGCG was one of the reasons I began taking it. Can't say I notice any slowing of progression though. The abstract is very short on specifics. It claims the life extension was significant, i.e. statistically significant, but that might be 5%. I'd like to see the original paper. Also, ALS-TDF have merely reprinted the abstract. As far as I know they have done no work on it themselves, or at least not reported on it.

-J

 

[ladave]

Dave,

The mouse study on EGCG was one of the reasons I began taking it. Can't say I notice any slowing of progression though. The abstract is very short on specifics. It claims the life extension was significant, i.e. statistically significant, but that might be 5%. I'd like to see the original paper. Also, ALS-TDF have merely reprinted the abstract. As far as I know they have done no work on it themselves, or at least not reported on it.

-J

John,

Rechecking the report, you're right, it wasn't an ALS-TDF study. I'd like to see the original paper too, if one of us finds it let's share it.

 

[John1]

John,

Rechecking the report, you're right, it wasn't an ALS-TDF study. I'd like to see the original paper too, if one of us finds it let's share it.

OK, I recognize a challenge when I see one. I have tracked down one of the author's email and sent him (her?) a request for a reprint of the full paper. I hope I have the right Kim. There are no fewer than 6 Kims listed as authors, all in the same department. I can't imagine how many there are in all of Seoul.

 

[Countrycouple]

Question of Something I just Noticed..

Good Morning All

Just a question..and hope it's not a stupid question..
I was just reading what ladave was writing about the program he is setting up for himself..

I noticed a few things.. Just wondering does ASPERTAME and MSG contribute or help ALS grow in oneself? Just curious.. Not that Mom drinks alot of pop or anything.. But likes her Gingerale now an then..

Thanx Again
Mike

 

[rcharlton]

Hey All,

Mike - there is tons of information on this site about the possible dangers of MSG and Aspartame. Just do a search - or search all of the threads by Jerry Story.

As for the paper on green trea, I posted the abstract on my thread below:

https://www.alsforums.com/forum/showthread.php?t=750

I have the whole article - so anyone who wants it can PM me with their e-mail address.

Don't you find the ECGC/Green Tea Extract crazy expensive. The usual dosage is only equivalent to 2 cups of tea. I'm sticking with drinking the actual tea itself - and I'm drinking white tea not green tea. White tea is a younger type of green tea that fermented for less time than green tea. I find it does not have that grassy taste regular green tea has. It is also supposedly signicantly higher in anti-oxidants and EGCG than regular green tea.

Third- Supplements. I have begun a supplement program that includes magnesium and a whole range of anti-oxidants, including R-ALA, Acetl-L-Carnasine, COQ10, ECGC/Green Tea Extract, Centrophenoxine, Grape Seed Extract, B-100, C and E. Also Omega 3-6-9 Fatty Acids, Milk Thistle, and Selenium. Olive-Q-Oil and Poly-Mono-Unsaturated Teel Oil with each meal (as suggested by the homeopathic doctor I saw).

Dave - what are the benefits of R-ALA, Acetl-L-Carnasine, Centrophenoxine, Grape Seed Extract, Milk Thistle, Olive-Q-Oil and Poly-Mono-Unsaturated Teel Oil?

Thanks.

 

[ladave]

RCharlton- I don't hold myself out as any great expert, but my understanding is that R-ALA, Acetl-L-Carnasine, Centrophenoxine, Grape Seed Extract, are all powerful anti-oxidants. There is a lot of information about these substances. Milk Thistle is primarily to sustain liver function, which may be inhibited by Rilutek. As explained by the homeopath I saw, Olive-Q-Oil and Poly-Mono-Unsaturated Teel Oil contain essential amino acids which ensure proper digestion; taken with the supplements, they greatly enhance the odds that they will be properly absorbed.

 

[ladave]

RCharlton-

In response to your question about cost, I actually found EGCG Extract to be about the cheapest supplement out there. I bought 60 caps for $14.99. I'm not posting the link to avoid making it look like I'm advertising but it is easily located through a Google search ("Teavigo" is the brand) and I'd be happy to email the info to you.

Dave