New studies show promise with zinc & copper

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This is a link to the description of the study
Safety Study of High Doses of Zinc in ALS Patients - Full Text View - ClinicalTrials.gov

There is much discussion of copper and zinc. My neuro believes copper and zinc in combination worth trying. However if you choose to do so there is blood work to be checked before and the monthly in her protocol.

There also is discussion of alstdi where 2 members spearheaded a small patient run study looking at the possibility of PALS having elevated FREE copper ( which they all did, 20 PALS I think) and treating them with Wilson's disease protocol of zinc supplementation. This is a different theory than that behind the more formal zinc and copper trial.

If you want to pursue this get levels tested don't just go out and buy supplements. If your neuro is not supportive I believe you can get blood tests privately ( they had a link over on alstdi to a lab). But if you want you can tell your neuro you heard Dr Merit Cudkowicz at MGH is using copper and zinc with some of her patients. ( if your neuro does not know who she is,get another one)
 
A bit more info here: ALSWW NutritionalSupplements

Question: for potential treatments such as this that "may be of particular benefit to patients with a mutated SOD1 gene", considering the SOD1 gene is primarily associated with fALS, how much benefit is it to non-fALS folks...?
 
just set to my clinic coordinator ....

>can you ask about the zinc & copper -- can you use earlier bloodwork to see if :I could try it?
 
Greg I hear what you are saying. Although I am FALS I am not SOD1 either. But the study I cited from clinical trials was not limited to SOD1 FALS. There are no results out of course but the idea of the ALS process causing a dearth of binders for toxins seems like it could carry over to nonSOD1 people. Then there is the elevated free copper issue about which you will have to decide for yourself if you wish to pursue. As with all the supplements we take you need to decide if it is worth a shot or not. None of us can afford to wait for all the answers. I am struggling with the choices. If we wanted we could spend all our time and money taking things and all our lists are probably a little different
 
For those pursuing this, the required pre-test from Nikki's post:

1. Serum Copper Test
2. Urine Copper Test
3. Serum Ceruloplasmin

The Serum Copper Level Minus 3 Times (some books say 2 and a half) the Ceruloplasmin Level.

Normal Free Copper Levels are 15-20 After This Calculation.

If Any Higher, You Have Excess Free Copper in Your System (most likely in the spinal cord and brain as a PALS).​
 
>If we wanted we could spend all our time and money taking things and all our lists are probably a little different

and we would still never know if it affected progression, unless we stopped progressing that is :)
 
Thanks Greg. My neuro also requires liver and kidney function and complete blood count while taking them
 
FYI:

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We did not test you for heavy metals when you had your workup. Discuss this with your PCP and you can have yourself tested thru your PCP. The study is not completed yet, we will wait for the results of the full study before we come to any conclusions. We have had drug studies that looked very promising in Phase I and II, but in Phase III, the study drug was actually found to accelerate the rate of progression of ALS
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And that is a valid view. Some of us have been dealing with this long enough to have endured the phase 3 failures at least once. Who remembers Dex? The problem is we don't know for sure. If it does nothing we have only lost money and effort. If it hurts us we have lost much more. But if it would help and we don't do it we lose too. No one can tell us. Our neuros will recommend what fits with their philosophy at least as much as their knowledge. Some are very much into trying anything that shows promise others are more do no harm. Neither is wrong. I think most of us PALS are in the try anything mode because we are in a desperate situation. But of course there is risk and if your neuro looks at that and tries to protect you according to his/her belief that is only good care
 
Max - thanks for contacting Karen. I always find her helpful & quick in responding to questions. Dianne
 
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