ZenArcher
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New Lithium based therapy announced
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ilgal
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Yesterday I went to my GP's PA who is my primary care provider. I took all the info I could find on the lithium and she agreed to prescribe and monitor via blood tests. She wrote script for lithium carbonate 150 mg twice a day. I'm getting from my insurance company's mail order pharmacy and a 90-day supply will only be $11. It will be about a week before it arrives and I begin taking it.
I'm definitely not a person who would fly off to a foreign country and spend beaucoup bucks on an unproven therapy. But low cost and a physician who will monitor (bless her!)--why not?!
Keep your fingers crossed!
I'm definitely not a person who would fly off to a foreign country and spend beaucoup bucks on an unproven therapy. But low cost and a physician who will monitor (bless her!)--why not?!
Keep your fingers crossed!
Jeff:
Thanks for the link.
Ilgal:
Let's pray that it helps. By the way, most of the research that I have seen is with lithium combined with riluzole. Are you taking both or just the lithium? I also read that it needs to be lithium carbonate, not lithium orotate, as dosage levels have been established only for the carbonate form.
Thanks for the link.
Ilgal:
Let's pray that it helps. By the way, most of the research that I have seen is with lithium combined with riluzole. Are you taking both or just the lithium? I also read that it needs to be lithium carbonate, not lithium orotate, as dosage levels have been established only for the carbonate form.
ilgal
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I am not taking riluzole. I opted not to at the beginning because the benefits are so negligible. I can't find anything that would indicate it is the combination that is effective, but I do plan to ask neurologist when I go in April.
bala80
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Hi Jeff,
I was wondering why you opted for the lithium orotate rather than the carbonate as used in the study.... also are you being monitored for blood lithium levels to be 0.4 mg/L as mentioned in the study?
I know it is natural to be skeptical about this, but if I'm not mistaken it was mentioned that "there was no progression in the lithium group, whereas there was a 50% decline in 3 months in the riluzole group". That is a pretty massive statement, and my first reaction was to be skeptical as well. But since hearing the study has been accepted into PNAS my hope has risen enormously. I say that because I have been a biochemistry researcher into Type 2 Diabetes and known how prestigious this journal is, and how precise and important a study must be before it is accepted.
And as for side effects, bring on any side effect under the sun, as long as it stops progression I don't care.
I was wondering why you opted for the lithium orotate rather than the carbonate as used in the study.... also are you being monitored for blood lithium levels to be 0.4 mg/L as mentioned in the study?
I know it is natural to be skeptical about this, but if I'm not mistaken it was mentioned that "there was no progression in the lithium group, whereas there was a 50% decline in 3 months in the riluzole group". That is a pretty massive statement, and my first reaction was to be skeptical as well. But since hearing the study has been accepted into PNAS my hope has risen enormously. I say that because I have been a biochemistry researcher into Type 2 Diabetes and known how prestigious this journal is, and how precise and important a study must be before it is accepted.
And as for side effects, bring on any side effect under the sun, as long as it stops progression I don't care.
ZenArcher
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I started on lithium orotate simply because I didn't have enough information at the time to think that I would be able to get a prescription for lithium carbonate. Also the element of concern is lithium which exists in both the orotate and carbonate forms. You can do a search on PubMed and find several studies on orotate. I am awaiting a standing order from my GP now that the blood levels have a little more fact behind them and will update once I get the results.
janetraden
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Dear Nada,
In a message a while back you said: "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".
May I ask yo uif he since has prescribed lithium? I'm asking because my husband's neurologist was aaginst prescribing lithium, however when I mentioned what I remembered from your message he bacame interested. So I'm thinking, if your mother's neurologist did end up prescribing it, and if you could possibly passs me his name, this might help persuade our neurologist. Do you think you could help?
Thank you!
Maren
In a message a while back you said: "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".
May I ask yo uif he since has prescribed lithium? I'm asking because my husband's neurologist was aaginst prescribing lithium, however when I mentioned what I remembered from your message he bacame interested. So I'm thinking, if your mother's neurologist did end up prescribing it, and if you could possibly passs me his name, this might help persuade our neurologist. Do you think you could help?
Thank you!
Maren
ilgal
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vmd,
Yes I'm going to use the ALSFRS scale. There is an informal "study" tracking scores of people taking lithium at the ALS-TDI website, so I'm going to periodically send them my scores and have it added to their database. The dau of a PALS is doing it and she is a PhD research scientist so she will be doing some statistical analyses of the numbers. I think the important thing for those taking lithium is to get to and keep the correct blood level. I have my first blood test Mon. morning and hope I'm reaching the possibly effective level quickly.
Yes I'm going to use the ALSFRS scale. There is an informal "study" tracking scores of people taking lithium at the ALS-TDI website, so I'm going to periodically send them my scores and have it added to their database. The dau of a PALS is doing it and she is a PhD research scientist so she will be doing some statistical analyses of the numbers. I think the important thing for those taking lithium is to get to and keep the correct blood level. I have my first blood test Mon. morning and hope I'm reaching the possibly effective level quickly.
dbw
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I have some concern about the creditability of the Italian Lithium trial. First, it was not list on the NIH's ALS clinical trails site (http://clinicaltrials.gov/ct2/results?term=Amyotrophic+Lateral+Sclerosis), where some Japanese, French and other foreign countries' clinical trials have been listed there. Second, how come the control group has 32 patients while lithium group has only 16 patients? Third, I wonder if the patient in the control group has ever been given the placebo.
AHands
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food sourves?
a california newspaper reporter diagnosed'ed with als ran a story on Li today: http://www.sbsun.com/news/ci_8088813
are there decent food sources of Li? most of the stuff i've read just gives the broad "vegetables and grains". some mention lemons, but others say "no" and that citrus plants do poorly in Li-rich soils. Tap water in some parts of the world is high in Li. Perhaps "which vegetables" varies widely depending on groundwater Li where they were grown?
a california newspaper reporter diagnosed'ed with als ran a story on Li today: http://www.sbsun.com/news/ci_8088813
are there decent food sources of Li? most of the stuff i've read just gives the broad "vegetables and grains". some mention lemons, but others say "no" and that citrus plants do poorly in Li-rich soils. Tap water in some parts of the world is high in Li. Perhaps "which vegetables" varies widely depending on groundwater Li where they were grown?
Food sources for lithium
Hi,
I doubt that you will an adequate fóod source for lithium. I have prescribed it for years for patients with mood disorders. It never seen anything in the literature about deriving this from food. It doesn't mean it isn't possible. If you do find any information that would be interested in seeing it. The Italian lithium study how to be published in the next few weeks in what I understand is a credible. Góod luck.
Mark
Hi,
I doubt that you will an adequate fóod source for lithium. I have prescribed it for years for patients with mood disorders. It never seen anything in the literature about deriving this from food. It doesn't mean it isn't possible. If you do find any information that would be interested in seeing it. The Italian lithium study how to be published in the next few weeks in what I understand is a credible. Góod luck.
Mark
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