Gotta find Polly quick.

Not the most comfortable ride home, that's for sure. Imagine sitting in your car with the top of your dress falling off your shoulders. I think I'll plan better next time.

When I came in the house I dropped my keys. And my sunglasses. And it occurred to me I drop things all day long.

When I looked at the mail there were two statement thingies from Blue Cross/Blue Shield. They are a frequent and regular correspondent.

Checking the PLM forum, I found this:

Dear all,

You are receiving this message because you or your PALS are participating in or have participated in or requested information about the online worldwide ALS lithium study. We wanted to let you know that the preliminary three month study report is now available for download. Please go to http://www.patientslikeme.com/forum/ and download the report from the latest "updates" link at the bottom of the page. Please note that this is a preliminary report which has not yet been edited or approved by PatientsLikeMe.

We will continue to collected data through the 6 month point after which we will write up a final report. All data collection and analysis after that point will be done by PatientsLikeMe.

Our basic results so far are, in summary:

At the three month point: Lithium does not affect ALS progression rates, at least for most PALS
Taking riluzole with lithium does not make a difference
Reaching a blood level of 0.4 does not make a difference
The ALSFRS-R score when lithium was started doesn't make a difference
Lithium may relieve cramps and fascics and spasticity for some at low doses (0.2 mmol/l blood concentration)

Although not in the 3 month report, it seems that PALS who are taking an Omega 3 supplement are progressing a bit more slowly. There was also an interesting research report that came out yesterday that calcium supplements may be helpful (Medications and laboratory parameters as prognostic factors in amyotrophic lateral sclerosis. Qureshi M, Shui A, Dibernardo AB, Brown Jr RH, Schoenfeld DA, Cudkowicz ME.) The research abstract didn't give the dosage, but a quick search of PLM indicated that many PALS on calcium are taking ~1200 mg/day.


Thank you so, so much to everyone who has provided data for the lithium trial. So far our research results have been disappointing, but it is so much better to get results quickly so that we can move onto the next thing rather than to have to wait 2 to 3 years for the traditional research machinery to do its work. You have shown what a dedicated groups of PALS and CALS can do!

Best wishes to everyone -- I'll be in touch,
Karen

Hello again everyone --

I should have mentioned in my last email:

If you decide to stop lithium, please remember to do so *SLOWLY*. Some PALS are having trouble with withdrawal. Decreasing your dosage by 150 mg/day per week is recommended. If you experience problems (increased fascics, speech slurring, etc.) try increasing your dosage again for a little while and then slowly decreasing again.

Also, if you stop lithium please make sure to let me know!! Just send me a message with the stop date and I'll record it on the spreadsheet. If you stop lithium I'll stop asking you for monthly ALSFRS-R scores but I will still ask you for an ALSFRS-R score at the 6 month mark so that we can have a complete accounting at 6 months for how everyone is doing, and prevent selection bias in the data set.

So many thanks again to all -
Karen

Karen is one of the researchers associated with PLM (I think). I have to go to the store tonight so I will buy some omega 3 pills and some calcium. I'm not ready yet to discount the lithium, either. Those of you who know me have heard me say if I thought it would help, I'd eat worms from China. I. Will. Try. ANYTHING.

What do you think? I'd love to hear your opinion.