Lithium

[Mark]

Is anyone out there with PMA considering a lithium trial in light of the recent study in ALS? I am planning to start. I was going to start tonight but my local pharmacy did not carry the low dose tablets suggested. I will certainly let you know if there is any positive results.

Mark

[hopingforthebest]

Good luck Mark! Keep us posted.

I am hoping for something for my husband. Breathing this past week has been an issue. Respiratory person coming this week to start Bi-pap as he is having labored breathing, and cannot lay flat at all.




Patty

[Al]

Hi Patty. Can you get a hospital bed on loan from ALSA/MDA. I find being propped up as well as the Bipap helps me.
AL.

[Mark]

Thanks Patty. Will do. I won't be able to get the correct tablets until tomorrow.

Mark

[Rae Ellis]

Hello...I am very new to this forum, so forgive me if I use some kind of incorrect internet etiquette! My husband has PMA and was diagnosed in 1997...can you believe it! When they said it was "slow progressing", they meant it in our case, anyway. Thank God! How do you get into a Lithium study. We go to the ALS Clinic every six months and they haven't mentioned it to us. Do we just suggest it to the doctor's at the clinic or is it being conducted by a specific group? We try, literally, almost everything that is suggested to us (although nothing has helped). and are interested in this. I plan on going through the archives of this site to see what I can learn. Good luck on your plan and I pray you will have fantastic results. Rae

[Al]

Hi Rae. The Lithium study has only been out in publication for a week or so hence you wouldn't have heard of it and you can find all sorts of links here or info at www.alsa.org.
AL.

[Mark]

Hi Rae,

Any willing physician can prescribe lithium. It requires baseline blood work, baseline cardiogram, following blood levels and periodic check of thyroid function and kidney function among others. I have heard mixed responses to the Italian study in terms of scientific rigor but given the other drugs being studied in the US and their similar use in psychiatric conditions with appropriate follow-up I think lithium is worth trying. I have a variant of PMA, confined to my neck down to my hands. I have fasiculations but no weakness in the legs. There was a link to a site started by a California geophysicist whose father was diagnosed with ALS last August. should get you there. If not let me know. Good luck and I will keep you posted.

Mark

[Al]

Hi Mark can you check the link. It wouldn't work for me and you had Www so I changed the capital but it still won't work.
AL.

[Rae Ellis]

Thanks, Mark and Al, for the information. We will speak to Jim's doctor about it. Jim is affected from his neck down to his feet. He doesn't seem to have any UMN involvement as yet. His hands, arms and legs are very weak and he tires VERY easily. When he falls down, it takes everything out of him for a day or two...so, I encourage staying in the chair. He breathes normally but is now experiencing some weakness in his voice. He can still stand and walk a few steps out of his chair (when it is raised) by locking his knees and using arm crutches. So this makes using the bathroom and showering easy for us. He is able to "drive" his chair to Starbuck's daily and has met some new friends there. I think he needs a break from my "hovering." We learn new tricks by trial and error and are blessed with everyday. I'm praying for you all on this site. Rae

[Rae Ellis]

Thanks for the link. I just emailed and asked if PMA patients might be included. I'll let you all know if I get an answer. Rae

[Al]

No problem. ZenArcher posted what the link was. Just another example of people helping people here.
AL

[Rae Ellis]

I emailed the woman listed on the site you provided and she emailed me back saying there were no studies regarding Lithium and PMA patients. She said she didn't think it would hurt any and to talk to the Dr. Asked that we let her know if Jim starts to take it so they can include him in the spreadsheet. We don't have an appointment with the Dr. yet and Jim wants me to do some research on Lithium treatment and the studies pertaining to ALS. I'll keep you posted. Hope you are all having a good day. Rae

[ZenArcher]

I had posted this elsewhere but thought it might do you some good.

Arimoclomol a co-inducer of HSP-70. http://www.ncbi.nlm.nih.gov/pubmed/17656567
Lithium an inducer of HSP-70. http://www.ncbi.nlm.nih.gov/pubmed/16797496 and http://www.ncbi.nlm.nih.gov/pubmed/12732732

Minocycline appears to inhibit GABA production. http://www.ncbi.nlm.nih.gov/pubmed/3382463 also there was a study done showing that permethrin based pesticides at high enough exposures could cause a motor neuron disorder which mimics ALS http://www.ncbi.nlm.nih.gov/pubmed/17130437. Permethrin based pesticides work by inhibiting GABAA receptors http://www.safe2use.com/poisons-pesticides/pesticides/permethrin/cox-report/cox.htm.
Lithium increases plasma and CSF GABA. http://www.ncbi.nlm.nih.gov/pubmed/6403063

Lithium inhibits glutamate uptake. http://www.ncbi.nlm.nih.gov/pubmed/9653192

Last but not least is oxidative stress http://www.ncbi.nlm.nih.gov/pubmed/17548157

[Al]

Good thing I figure I can trust you Jeff. I usually go to every link posted and read them to see if it is ALS related. Too tired tonight. Hope yur not trying to slip one by me. LOL. Careful, maybe I'll check tomorrow.
AL.

[ZenArcher]

**Hurries to edit the Give Me All Your Money link**

Nope, they're all related if not directly to ALS then to one of the suspected mechanisms. The strongest influence for me taking lithium was the fact that it is reported to affect so many different mechanisms. I've always believed that any effective treatment would be a multi-pronged attack. I don't know if lithium is it but there is enough science behind it for me to give it a shot.

[Al]

I'll be going to the clinic on Mar. 4 to get it. Heard through the grapvine a dozen people are on it.
AL.

[AHands]

thanks!
what is the difference between an "inducer" and a 'coinducer"?

[ZenArcher]

I won't guarantee this is correct but my understanding is that a coinducer promotes the production of and an inducer causes the production of. Again I can't find sources to confirm that but I got that idea from somewhere. Just FYI aspirin is a HSP70 inducer as well.

[rick/Wpg]

Hey Jeff...i need your help!
I was just entering my credit card info on your 'send me all your money link' and it crashed! Do you have a new link? :)
on a more serious note...am going in tomorrow to our ALS clinic for my first major assessment...got my dx Feb 1/08.....am going to be asking about lithium as my prescription for Rilutek just went thru...should have it in the next few days...will post what they say
The ALS Assoc. folks up here are really on it....spoke to me 2 days after the lithium report broke to suggest it as a possibility.
Not sure what the system up here will be re reporting,etc but will update as I know.
Appreciate all the info you post
Tks!
Rick

[Kevinski]

hi Kevin from Calgary,have been dx withals since june 07,have been on the lithium and the ritulek for almost a month now,no bad side effects to report and i do feel that i am not as tired.My speech is gone now but evrything else works ,so i figured if vthis new combo of meds can keep me walking and doing the physical things i like to do ,its worht the try.Good luck to ..kevin