Excess free Copper Trial

[jchexpress]

Hi,

I am a six year bulbar onset survivor who can still walk, talk, eat and work. I have some weakness on my right side, but quickly researched and developed a daily regimen that has kept my ALS at bay now for six years (knock on wood).

I am currently seeking trial participants for a small, easy and safe "excessive free copper level" trial.

I have many participants already in this trial from als.net (TDI) as that is only where I am a six year member.

The cutoff date for participating in this trial is tomorrow by midnight (sorry for the short notice, but it just occurred to me to branch out to other ALS forums to recruit more participants).

Just a little background information on me... After researching and developing a daily regimen to try and help me survive ALS and realizing my regimen was working, I focused on researching labs and ALS. I have studied them now for over five years (6-8 hours a day). I haven't stumbled upon anything in that amount of time, until recently.

I looked through the hundreds of labs PALS have sent me over the years and finally found something which may have MAJOR implications to the possible cause, treatment/cure and a potential biomarker for ALS. Excess FREE copper levels. Out of the hundreds of lab results I have, I had only three which contained the tests I needed to calculate their FREE copper levels. ALL THREE were significantly elevated. This is in addition to mine being significantly elevated. So, 4/4 thus far.

Now, there are FDA approved copper chelating agents which remove excess free copper from the body. In addition, there is zinc acetate which prevents further buildup of FREE copper in the body.

In six years over at als.net, I have never proposed anything as a treatment and/or cure for ALS. Now, for the first time, I am proposing I may have found the cause, treatment/cure and a potential biomarker for ALS.

If you would like to read more or more importantly take part in this trial (which you must do by midnight tomorrow), please visit and see the next to last post in the thread)......

2014 & Excess Free Copper - Last Chance to Participate in Trial Tomorrow! - ALS Research & Treatments - ALS Forums | ALS TDI - ALS Therapy Development Institute

Thanks for your time and I look forward to your potential participation in this very important but easy and safe trial.

Jason

 

[Outdoor_Man_Nc]

I am too late. They did test my body for copper when ruling out other causes for my illness instead of ALS.

 

[Inventor]

Copper and free (=not bound to proteins) copper are two different things. Only 10 % of the copper in blood is supposed to be in the free form.

 

[sf58]

My copper levels also were deemed normal by MAYO, but I don't know about FREE copper? Any thoughts? My son did PhD on Alzheimers and there is a definite relationship between copper and plaque in the brain. Any recommendations to remove copper if it exists? Will a zinc supplement help decline copper? Who can test for FREE copper?

 

[Inventor]

High free copper is known to be the cause of Wilson's disease, so the methods described in connection to that should be valid. The usual method for determining serum free copper is to measure the serum total copper and serum ceruloplasmin separately and then use a calculation formula to subtract the ceruloplasmin-bound copper from the total copper. See Wilson (Wilson's) Disease Lab Tracker - Copper Calculator . There are some significant uncertainties in the results obtained in this manner, though:
Direct Measurement of Free Copper in Serum or Plasma Ultrafiltrate

 

[dbltree]

My copper levels also were deemed normal by MAYO, but I don't know about FREE copper? Any thoughts? My son did PhD on Alzheimers and there is a definite relationship between copper and plaque in the brain. Any recommendations to remove copper if it exists? Will a zinc supplement help decline copper? Who can test for FREE copper?

Zinc Acetate is the only type that is helpful and used to help treat Wilsons disease, available only in lozenge form. I got mine thru progressive labs, also available in prescription form called Galzin.

ZA is also being tested independently for ALS at pretty high levels, phase I produced positive results.

I take 3 15mg lozenges a day and have a thread on zinc on Winning the Fight with links to trials etc. I think Jason is on to something and hoping his trial will yield more information...

 

[Inventor]

Some preliminary results and launching of an extended study:

Extended ALS free copper study

The actual report of the results should be out in a few days. The links at the bottom of the page will be made functional at that time.

 

[dbltree]

Thanks for helping Jason with this...well done!

 

[Inventor]

The pilot study was pretty labor-intensive, as all data was collected through emails and sorted out by hand. Jason had several hundred contacts from PALS wanting to take part, but we could only accomodate 20 or so.

Now that we have practiced the drill and know exactly what is needed, I was able to set up an automatic data collection and analysis system so that we no longer have any limitations on the number of participants. On the contrary: the more PALS we get in, the better statistics we get. And in exchange for their lab results, participants get immediate access to what we have found out so far.

I for one can't wait to see how this exercise will turn out.

 

[dbltree]

Trial will run 4-6 months Inventor?

 

[Inventor]

That will run indeterminately: the form is there, and all data posted there is automatically updated on a set of graphs on the net. And anybody who has submitted the requested data, receives access credentials to a forum where all info we have managed to find out will be shared in real time.

Jason has another trial going on with the initial crew of 21, where we're trying to lower our serum free copper levels and monitor if that has an effect on the rate of progression. That trial will continue at least 6 months, at which point we'll assess the situation and decide whether to wrap it up or continue for additional few months.

 

[Inventor]

The result report is finally out.

 

[Inventor]

I collected the current public info on the study in one location.

 

[Txgirl]

My copper was normal BUT my free copper was HIGH. I will start the medical grade zinc this week.