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I really like Dr. Simmons. You are under great care. Did Dr. Simmons say he was going to continue to prescribe lithium? I went with my father to all his appointments with Dr. Simmons. Susan is wonderful too.:mrgreen:
 
In all honesty I didn't ask. I had sent him the report as soon as it was published and he had talked with another neuro about it prior to my visit. I know that in discussing other possible treatments such as low dose naltrexone he had always been willing to go off label if it made sense.

I was with Susan, Shelley and Judy as well as a good portion of the Philly crew in Harrisburg yesterday for PA ALS Awareness day at the capitol building. I was one of four PALS there. We had a good time and I believe helped personalize the disease and the legislature for quite a few of our state reps. I would highly recommend it to all that are able.
 
Jeff:

Thanks for posting a pic of yourself, and, who, I presume is, your better half.
 
Naw. That must be his daughter.
AL.
 
Yup, that's the ole ball & chain (Tam) just don't tell her I said that.

As for Al, she's mine back off :-D
 
Cute. Her, not your comment. Much too young looking for an old fart like you. By the way 6 went and got scripts today. No problem.
AL.
 
heres an italian newspaper story

seems several prominent italian soccer players have come down with ALS, so over the last few years its been getting media attention over there...maybe this prompted a greater demand on italian researchers...dont know...but the lays out more detail as to how they arrived where they are today. good read and very promising.


http://www.ansa.it/site/notizie/awnplus/english/news/2008-02-07_107179176.html
 
italian soccer stars

http://cbs4.com/topstories/ALS.Lou.Gehrig.2.395410.html

the above story relates to italian soccer star in significant numbers coming down with ALS. I remember what impact Magic Johnson had on AIDS research when he announce he had the virus. It was a national headline here. Needless to say, these Italian Soccer plays are pretty prominent, many are stars. Do you suppose this had an impact on developing this agressive research in Italy?
 
I'm kind of inwardly groaning to post this here, as what I have CFS is really nothing in the whole big scheme of things, but I thought that some of you might find it interesting that I started taking lithium orotate (bigger molecule, less lithium than carbonate--if you have ALS, don't self-treat with orotate) a couple of months ago and my symptoms are very, very nearly non-existent right now. I'm only taking 20 mg of elemental lithium per day, and it's the only thing (other than the craziest placebo effect I've ever heard of) that I can think of that would have stopped this thing. I had non-stop, bodywide twitching and endless muscle pain. Now, nothing.

In addition, looks like they are already looking at lithium in a number of other neurodegenerative conditions. I'm betting this stuff is for real, no matter how small this first study was.
 
Given the limited amount I know about CFS I don't have a problem believing it would have an impact. Lithium has been researched as a neuroprotective for years. PubMed has articles referring to lithium as a neuroprotective dating back to 1991 so seeing it go to trial for other neurological conditions makes sense. Since the Italian study has been published I'm willing to bet you'll see trials for several others surface in short order.

I am cautiously optimistic as I said to Jamie in a PM earlier today. Lithium has impacts on several of the proposed mechanisms of ALS which I posted earlier in this thread.
 
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lithium

Jeff,
Thanks for all your great research and investigative work. Your postings encouraged me to request lithium for my husband. From what you have posted, you sound like you are at the same stage phsyically. Who knows.....lets hope for our miracle. Kelly
 
Kelly, I'm hoping for the best. I see you're from Saratoga Springs. I lived in Ballston Spa right on route 50 for 4 years. There was a little diner, I can't remember the name, on the left hand side if you are going south of 50 and my driveway came off their parking lot. It was two blocks before the McDonalds. Of course this was more than 10 years ago now.

If you saw me walking down the street you wouldn't know. In fact I was at PA ALS Awareness day in Harrisburg on Monday and several of the ALSA people that work at a different clinic didn't know I was a patient until I told them. I'm not complaining in the least :) My left hand is weak but workable. My biceps are weakening as are my shoulders. Other than that I'm starting to get some fatigue in my shins which leads to "foot slap". All in all considering my first symptoms were 2 1/2 years ago I'm not going to complain one bit :-D
 
Given the limited amount I know about CFS I don't have a problem believing it would have an impact. Lithium has been researched as a neuroprotective for years. PubMed has articles referring to lithium as a neuroprotective dating back to 1991 so seeing it go to trial for other neurological conditions makes sense. Since the Italian study has been published I'm willing to bet you'll see trials for several others surface in short order.

I am cautiously optimistic as I said to Jamie in a PM earlier today. Lithium has impacts on several of the proposed mechanisms of ALS which I posted earlier in this thread.


Hey, thanks for that great link. I'm going to go and look at that in depth here in a minute, but it looks very well done at quick glance.

The thing about CFS is that we don't know what causes it. Some claim it's in the muscles, others claim there is something irritating the nerves, others claim it is a potassium ion channel problem. Given that we don't know the exact mechanisms of Lithium, either, (though it does appear to be protective against glutamate excitability and has some other documented functions) I figured that, hey, my nervous system is not acting normally for unknown reasons, and since all of lithium's mechanisms are not fully understood--heck it makes the grey matter in very particular parts of the brain grow--I would give it a try. I had little to lose at the levels I was taking. My symptoms were fatigue, cramps, constant bodywide twitching and weakness--all common for CFS. Yet my EMG/NCV and nuerological exams were normal. I didn't even have a hint of any fibs, for instance. So I tried it ,and it worked for me. Now, I haven't recommended it to any other CFS'ers. If this were aboutcfs.com, I wouldn't have mentioned it at all. One person is not a trial. Plus, CFS can spontaneously go into remission, though that's pretty rare.

Anyway, you are probably right, but my symptoms were severe and now they are gone. If it were something like sleeplessness, I could go with the placebo effect. Actually, that would be fine--whatever works. But, as I said, I had very severe CFS symptoms and now I have nothing. I have to think that something specifically stopped it, and the only changed I made was lithium.

Anyway, wherever the truth lies, I'll not quit it, that's for sure.

Again, thanks for the site. Can't wait to go through it.
 
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Ah, Zen Archer, apparently the lithium isn't helping my reading skills. You said you DIDN'T doubt it, so I guess you weren't intersted in my thought processes, huh?:-D

Oh, well, I always look for chances to engage in uncontested soliloquies.

Just finished looking at that site. Just fantastic work.
 
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