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John1

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A new lithium based therapy for ALS was announced recently at a conference in Rome. The release is in Italian at:
http://www.diregiovani.it/gw/producer/dettaglio.aspx?id_doc=5490

I ran it through Google translator to English and then took a stab at editing the very rough output to make it more readable. I speak no Italian so my interpretation may be faulty. Results follow:

(SAY) Rome, 8 November. A new therapy can slow down the progress of ALS through the use of drugs based on lithium salts. The development team is composed of Italian scholars and researchers of Santa Lucia di Roma, Neuromed and the University of Pisa.

The news was given today during the 34th meeting of the Italian League for the Fight Against Parkinson's Disease by the same scholars, who, for 15 months, have applied the new therapy on a group of 16 patients. "In total- says Francis Bakeries, a researcher at the University of Pisa, one of the authors- the project involved 48 [ALS] patients for a period of 15 months: 16 took lithium salts with riluzole, the other 32 only riluzole" . After testing 15 months researchers have found a mortality rate of zero on patients treated with lithium salts. "The patients -explains Fornai- had been diagnosed with ALS already for a year and a high percentage had the most aggressive form of the disease,i.e. bulbar". In the other 32 patients, however, the rate of mortality "was 30%". In patients treated with lithium, then, "there was not any significant progression- continues Fornai- while in others there has been a decline of 50% in the first 3 months.
Patients were recruited from the Mediterranean neurological and neurological clinic in Pisa. The treatment is based on the following principle: the lithium could accelerate the removal mechanisms of protein and altered mitochondria and promote the genesis of new mitochondria. Another 100 patients are currently under care in a further study of the drug. Researchers will recruit others while awaiting the publication of the first results. "With this therapy is given a hope to the ill- Stefano Ruggieri, Neuromed- thanks to a drug that, among other things, costs very little."
 
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ZenArcher

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I've been following this since it was initially posted on the ALSTDI forums. Although I have to admit it looks extremely promising I wouldn't call it a therapy yet. A study size of only 16 patients in the test group means that chance could play a factor. Having said that since I've decided to do my own experimentation with the best test subject I know, me, I've ordered a couple bottles of lithium orotate. From what I've read the patients in this study were taking fairly high doses which I don't intend to do because I won't be under direct medical supervision for this purpose. I'm currently getting blood test done every two weeks due to elevated liver enzymes from the Rilutek and I'm hoping they'll help to catch anything amiss. Because the study size is so small and it is so early in the initial testing it's hard to cell where this will go but there have been previous theories concerning antidepressants and even some of the more skeptical researchers are showing reserved hope.
 

liz

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Jeff -

It is possible to go toxic on Lithium in just a few days and it is also not uncommon. The consequences can include seizures and brain damage. If you experience dizziness, disorientation, tremors, slurred speech (worse than usual), these are signs your Lithium levels may be elevated to dangerous levels.

That said, good luck with your experiment. I'll be interested to hear if you notice a difference with your progression.

Liz
 

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This sounds promising, Jeff, keep us informed.

do you intend to combine the lithium with the rilutek or just the lithium? If i were you, i would find a good neuro or internist to follow you, just in case.

GOOD LUCK!

If anyone here deserves to feel, get better, you are def. one of them, you are so inspirational!

Rgds,

Jamie
 

John1

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Liz, I'm glad you underscored the dangers of self-medication with lithium. In no way would I recommend anyone to try this on his/her own and the therapy is not conclusively proven yet as Jeff points out - just promising. If it does prove out, there will be no long approval period since it is already in use for other illnesses, notably schizophrenia, depressive and bi-polar disorders.

Jeff, I look forward to any results you have with your low dosage approach.
 

ZenArcher

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Trust me I did my research before even thought about ordering this stuff. The levels of lithium used to treat bipolar disorder which is its normal application are much higher and are lithium carbonate not lithium orotate. I do realize there is some danger there however the dosage I'm taking is well below what is normally prescribed and is of a form that is much easier for the body to process. Lithium orotate is a supplement sold in many health food stores. I appreciate your concern and take your warning to heart.

As of right now I'm 50 mg of Rilutek so they can see what my liver enzymes do. I intend to wait until I have the results from my next blood test and then based on that I'll decide whether or not to start the lithium. I intend to inform the clinic in Hershey that I am doing this for two reasons. First so they can help keep an eye on the outcome/problems and two because I want to make sure I remain eligible for the Arimoclomol trial.
 

Al

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OK guys I hate to play Devil's Advocate here but wasn't it Italy a while back that had a bunch of ALS patients sue the Gov't for access to some drug someone invented but wasn't 100% proven? and has anyone heard any good results from that? No. I'm wondering how the Italians come up with these startling new breakthroughs but only with small groups and no one else does. Makes me wonder. But I'm a skeptic by nature.
AL.
 
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liz

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Fair question, for sure. But at least in this case the treatment is relatively low cost and, with good monitoring, relatively low risk. When Jeff announces he's jetting off to Costa Rica for the latest in stem cell therapy, then I'll start to worry. But I'd be happy to go along for the ride :).
 

ZenArcher

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No worries I have no intentions are getting any stem cell therapy at any point in the near future. Supplements I'm willing to try. The Italians recently sued the government for access to IGF and won. There are several people currently undergoing treatment with IPlex and hopefully the outcome is good and that will lead a future clinical trials but that remains to be seen. The Italians aren't the only ones that have been interested in lithium. There've been several articles written on the effects lithium has on the nervous system and even some with respect to ALS.

Shin JH, Cho SI, Lim HR, Lee JK, Lee YA, Noh JS, Joo IS, Kim KW, Gwag BJ.
Department of Pharmacology, Ajou University School of Medicine, Sawon, Korea 442-749.
The Fas pathway and oxidative stress mediate neuronal death in stroke and may contribute to neurodegenerative disease. We tested the hypothesis that these two factors synergistically produce spinal motor neuron degeneration in amyotrophic lateral sclerosis (ALS). Levels of reactive oxygen species were increased in motor neurons from ALS mice compared with wild-type mice at age 10 weeks, before symptom onset. The proapoptotic proteins Fas, Fas-associated death domain, caspase 8, and caspase 3 were also elevated. Oral administration of 2-hydroxy-5-(2,3,5,6-tetrafluoro-4-trifluoromethyl-benzylamino)-benzoic acid (Neu2000), a potent antioxidant, blocked the increase in reactive oxygen species but only slightly reduced activation of proapoptotic proteins. Administration of lithium carbonate (Li(+)), a mood stabilizer that prevents apoptosis, blocked the apoptosis machinery without preventing oxidative stress. Neu2000 or Li(+) alone significantly enhanced survival time and motor function and together had an additive effect. These findings provide evidence that jointly targeting oxidative stress and Fas-mediated apoptosis can prevent neuronal loss and motor dysfunction in ALS.

Pasted from <http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17105868&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum>


I do my own research and draw my own conclusions. I understand and appreciate the caution and skepticism and I have it as well but I'm willing to spend the $12.00 and give it a try. Modern medicine has had 138 years to find a treatment and to date we of Rilutek. Do I believe this will work, maybe. Do I recommend that anyone else give this a try, of course not. As the old saying goes, "what doesn't kill me makes me stronger" and I'm not dead yet:)
 

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As I said I am a skeptic but just started taking a supplement that was provided to me free by the manufacturer/distributor after contacting me after seeing the Globe article. They were telling me how great their product was so I said put up or shut up more or less. So I have a 6 months trial supply. I'm not going to say what it is for a while to see if it has any benefit first. I am willing to try something that isn't going to break the bank too on the off chance it might help. Some of these supplements do work. Others are scams. Sorting out which is which is the fun part.
AL.
 

Bluenadski

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I've been following this since it was initially posted on the ALSTDI forums. Although I have to admit it looks extremely promising I wouldn't call it a therapy yet. A study size of only 16 patients in the test group means that chance could play a factor. Having said that since I've decided to do my own experimentation with the best test subject I know, me, I've ordered a couple bottles of lithium orotate. From what I've read the patients in this study were taking fairly high doses which I don't intend to do because I won't be under direct medical supervision for this purpose. I'm currently getting blood test done every two weeks due to elevated liver enzymes from the Rilutek and I'm hoping they'll help to catch anything amiss. Because the study size is so small and it is so early in the initial testing it's hard to cell where this will go but there have been previous theories concerning antidepressants and even some of the more skeptical researchers are showing reserved hope.

Jeff, what dosage are you taking?
I was wondering - my mother has PBP and I've been looking at this closely. Her neuro says research has been promising but nothing groundbreaking or solid yet. Therefore, roughly translated - this therapy will not be available for at least 4-5 years under UK HC system.
Let me know. I'vebeen seeing general doses per tab at 120mg PU. Not sure if this is safe or way too much.... any info you can give will be welcomed.

Thanks,
Nada :-D
 

ZenArcher

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That's about where I'm starting when/if I start. The information I got on the trial was a much higher dosage but it was also the prescription lithium carbonate. Just remember this is not something to jump into lightly. Do your research and talk with a health care professional. Even supplements can interact with one another or prescriptions. Caution and skepticism are very good traits to have under these circumstances.
 

liz

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So what are you saying, Jeff? The trip to Costa Rica is off? I'm very disappointed. :|
 

ZenArcher

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Australia or bust :)
 

Bluenadski

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That's about where I'm starting when/if I start. The information I got on the trial was a much higher dosage but it was also the prescription lithium carbonate. Just remember this is not something to jump into lightly. Do your research and talk with a health care professional. Even supplements can interact with one another or prescriptions. Caution and skepticism are very good traits to have under these circumstances.

Thanks Luv!

What I wanted to hear...

I have been looking at this closely for the last couple of years - strangely before my mother was diagnosed. I've always had a strange interest in neurological illnesses.
My brother has Autism in mild form with borderline schizophrenia - with my mother displaying similar traits (somewhat diluted to depths of aspergers). For the depression which accompanies autism/aspergers I started looking at lithium and the effect it had on symptoms. Following on I discovered the fascination European medicine held with Lithium and treatment for such ailments.

I, as ridiculous as it may sound - feel instinctively positive about these trials. My instincts (without blowing my own trumpet) generally tend to be spot on.
Call me mad - but from what I have read on active studies etc am genuinely excited about this area of research.

My mothers neuro was not negative when I mentioned the possibility of starting lithium. He is incidentally the chairman of the MND (ALS for US) association of Scotland. To me - thats enough. :-D
 
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