Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Jan 05, 2012)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Dec 01, 2012
200 mg
Weekly
Slight
None
Usually
Somewhat
Jun 19, 2012
200 mg
Weekly
Slight
None
Usually
A little
May 01, 2012
200 mg
Daily
None
None
Always
A little
Apr 20, 2012
Daily
?Can't tell
None
Usually
Somewhat
Apr 14, 2012
Daily
Major
None
Usually
Somewhat
Date
Dec 01, 2012
Advice & Tips
Performed self injection of sodium chlorite after end of NP001 trial but no longer seemed to be working.
Cost
< $25 monthly
Date
Jun 19, 2012
Advice & Tips
On Monday June 18 I self administered my weekly infusion of 4 ml = 200 mg of sodium chlorite. About one hour later I went for my daily 1/2 hour swim. For the first time since starting this swimming program about 3 weeks ago I didn't feel like I was on the verge of drowning, i.e., just barely able to keep my head above water. Also, my breathing felt more 'productive'. Previously I would swim one lap and rest at the end breathing very hard, but it felt as if I couldn't get enough air into my lungs and I would breath hard for along time. This time it felt normal where I would breath hard for only a short time.
Cost
< $25 monthly
Date
May 01, 2012
Advice & Tips
May 30 infusion. No improvements.
Cost
< $25 monthly
Date
Apr 20, 2012
Advice & Tips
Performed an infusion Friday April 20. Unlike the previous infusion I did not experience an improvement in swallowing.
Cost
< $25 monthly
Date
Apr 14, 2012
Advice & Tips
I have now given myself two rounds of IV infusions of off the shelf sodium chlorite. I was ready to give up on sodium chlorite because its effect has been diminishing since the tail end of the NP001 study. However, was pleasantly surprised this time.
Lately I have been drinking seltzer water rather than tap water because I find it much easier to swallow. In fact, I have not been able to swallow plain water for over a month now. Last night I grabbed my glass of water and was drinking it while watching my son on the swing. While I usually focus like a laser on the task of drinking I wasn't paying attention, rather I was focused on my son. After a few sips of water I realized that the water had gone flat and I was still able to drink it. Also I could drink it without doing the chin tuck, which has also been necessary for the last couple of months. The difference is small but unquestionably real.
I am approaching my one year 'chlorite' anniversary. I had my first infusion in June of 2011. This is very encouraging and tells me that chlorite is still having some effect.
Cost
< $25 monthly
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Sodium chlorite
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