Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Dec 14, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Mar 10, 2012
467 mL
Daily
Slight
Mild
Always
Somewhat
Dec 21, 2011
467 mL
Daily
Slight
Mild
Always
A little
Date
Dec 21, 2011
Advice & Tips
I've finished my first 8 days of oral sodium chlorite: 8 days on, 14 days off. • 0.75 mg/kg. @ 82 kgs. bodyweight. • 467 ml. each day in 2 or 3 servings, by glass w/straw.
• No antioxidant supplements during “ON” cycle. Resumed those supplements during the “OFF” cycle. • Continued to take B12 (methylcobalamin) 1.5 mg, and 2 probiotic capsules daily during this On cycle. Also, "Dabigatran" for edema (swollen feet), and Milk of Magnesia laxative tablets.
It's been like a yo-yo. Sometimes I really had to nap, other times I had great energy. Three mild headaches in total, with no diarrhea or nausea at all. My usual soft stool became harder and less plentiful. Bowel movements required more effort, but no constipation.
No particular “recovered functions”, but no real discomfort either. Overall, in a very subtle way, I feel good!
OFF cycle (2 weeks, Dec. 22~Jan. 5) Possible increase in overall fasciculations. Daily energy leveled off, back to my usual low.
I'll continue taking this treatment because the benefits might increase with each successive cycle.
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Dec 08, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 06, 2012
35 mg
Daily
None
Mild
Always
A little
Feb 02, 2012
35 mg
Daily
?Can't tell
None
Always
Very
Jan 17, 2012
35 mg
Daily
Slight
Mild
Always
A little
Jan 16, 2012
35 mg
Daily
Slight
Mild
Always
Somewhat
Jan 12, 2012
35 mg
Daily
?Can't tell
Mild
Always
A little
Dec 28, 2011
59 mg
Daily
None
Moderate
Always
A little
Dec 27, 2011
59 mg
Daily
?Can't tell
Mild
Always
A little
Dec 23, 2011
59 mg
Daily
?Can't tell
Moderate
Always
Not at all
Dec 15, 2011
35 mg
Daily
?Can't tell
Mild
Always
Not at all
Dec 14, 2011
35 mg
Daily
?Can't tell
Mild
Always
Not at all
Dec 13, 2011
35 mg
Daily
None
Mild
Always
Not at all
Dec 08, 2011
35 mg
Daily
?Can't tell
Mild
Always
Not at all
Date
Feb 06, 2012
Advice & Tips
Not sure if I am going to continue the treatment as it seems as if I loosing muscle faster as a result. Looking forward I will be looking at bacteria as the source of my issue and treating my blood with UV lighting to kill the bacteria.
Date
Feb 02, 2012
Advice & Tips
This is our first time taking SC at night. In addition to .75mg/kg of SC plus kosher salt, we added .3ml of lemon juice. Hope this makes a difference. To date we have seen no gains from this. We will do our best to see if we have seen an loss of functionality; perhaps we have not lost anything since starting treatment in December.
Date
Jan 17, 2012
Advice & Tips
Completed five days of taking SC. Yawning may have gone down, but not sure of other benefits.
Date
Jan 16, 2012
Advice & Tips
Completed fifth day and final day and noticed that I am not yawning as much. Perhaps able to breath better but not sure. I am certain this started after my first day of taking Sodium Chlorite of this round. I am only going five days on and 16 days off, so this is my last day.
Date
Jan 12, 2012
Advice & Tips
We started up today our SC treatment. This time we are reducing the dose back to .75mL/kg with no lemon juice added. The pH for the solution is just at or a little above 7.0. Excess saliva appears to be the initial side effect, no nausea as reported the last round.
Date
Dec 28, 2011
Advice & Tips
I am going to stop treatment after five rounds. The side effects coupled with the pain in my body out of not taking my antioxidants is too much. I think I may have had to high of a dose at 59mg (1.25mg/kg). In 16 days I will resume at 35mg (.75mg/kg). Certainly if anyone has any suggestions let me know.
Date
Dec 27, 2011
Advice & Tips
To this point, day 5 of treatment, osc is looked upon as a "have to" then a "want to". I am tired of being nauseas and not eating for an extended period of time. I miss my healthy chocolate which is high in antioxidant, which is why I am avoiding it.
Date
Dec 23, 2011
Advice & Tips
For this round we added both a dash of kosher salt and .3ml of lemon juice. Based on our pH paper we can tell the acidity is at 6.5. Took in the morning and fell right back to sleep.
Date
Dec 15, 2011
Advice & Tips
Will begin treatment at a higher concentration and add a pinch of salt in 16 days. For third round will add lemon juice.
Date
Dec 14, 2011
Advice & Tips
I am completing my first round today of OSC. At this time, I experienced mild side effects. I did a high dose concentration in what amounted to a little less than shot glass of solution. I will be increasing the amount of SC in the next batch.
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Aug 20, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Jan 07, 2012
1 L
Daily
Slight
Mild
Always
Not at all
Dec 18, 2011
1 L
Daily
Slight
Mild
Always
Not at all
Nov 30, 2011
1 L
Daily
Moderate
Mild
Always
Not at all
Nov 18, 2011
1 L
Daily
Moderate
Mild
Always
Not at all
Oct 19, 2011
1 L
Daily
Moderate
Mild
Always
Not at all
Oct 13, 2011
1 L
Daily
Moderate
Mild
Always
Not at all
Sep 23, 2011
1 L
Daily
Moderate
Mild
Always
Not at all
Aug 27, 2011
1 L
Daily
Slight
Mild
Always
Not at all
Date
Jan 07, 2012
Advice & Tips
I just completed Round 7 with concentration again at 1.0 mg/kg. It seemed that the positive effects of the chlorite were not as evident as they were in previous rounds. I tried to consume most of the OSC in the afternoons on an empty stomach this time to improve the absorption into the blood stream. This was certainly more effective than consuming on a full stomach (noticed by the increase in side effects as compared to Round 6), but I didn't feel that the improvements were as noticeable as they were in Rounds 1-5. Not to say that the ALS progression had worsened, but I just had not noticed any real improvements this time. As far as negative side effects go, I seemed to have a little more trouble in the bowels this round. Constipation for 3 days, two separate times was experienced. This was very uncomfortable, so much so that I stopped one day short drinking the OSC. The plan moving forward is to continue with Round 8, maybe this time increasing the concentration back to 1.2 mg/kg again to see if gains can be experienced. Even with no noticeable gains, the fact that OSC seems to be slowing ALS progression makes this a viable treatment option and one I plan to continue.
Cost
< $25 monthly
Date
Dec 18, 2011
Advice & Tips
I just finished round 6 of OSC and changed a few things around this time. The first thing was to double the concentration of chlorite per gallon so I would only have to drink ½ L per day. This made it a little easier since a Liter of liquid is a little bit hard to drink sometimes. I also reduced the chlorite concentration per day back down to 1.0 mg/kg. This helped to lessen some of the negative side effects, namely fatigue. Another thing different this time around was that I tried to consume the chlorite in the evening after dinner instead of in the afternoon on an empty stomach. I did this so that the mental fatigue caused by the chlorite could be used as a positive before bedtime. Doing this, I noticed that the negative side effects were much more tolerable, but I don't think that the efficacy of the chlorite was as pronounced as it had been before. I noticed only very subtle gains this time. It seems that drinking the chlorite solution on an empty stomach is certainly a better way to get the OSC into the blood stream. Maybe drinking very late at night, with an early supper might work better?
Cost
< $25 monthly
Date
Nov 30, 2011
Advice & Tips
Well, I just finished Round 5 of the chlorite experiment (7 days on) this past weekend, and I think I have found my maximum concentration limit at 1.2 mg/kg. At this concentration level, the side effects experienced were very significant. Mental fatigue was the worst of the side effects. About 15 minutes after starting consumption of the chlorite solution (on an empty stomach), I started to feel the effects coming on. About an hour later, it was hard to keep my eyes open as I found myself falling asleep each day. After waking, I felt very unmotivated with kind of a foggy feeling in my head. Other side effects included slight nausea and diarrhea. Also noted, was a little bit of respiratory distress. It was a feeling that is hard to describe as there wasn't any build up of mucous or anything in my lungs, but it seemed like I was having a little bit of difficulty breathing though my diaphragm strength seemed to improve. On the positive side, I felt great the day after stopping OSC and continue to feel good a few days later. As mentioned above, I think my diaphragm strength is still improving, as well as improvements to right arm and hand. Legs though are still getting weaker. During this latest "off period", I've added a probiotic blend to my list of supplements to help aid with gut flora repopulation after OSC. For Round 6, I think I will back off the concentration to 1.0 mg/kg as the side effects seem to be more tolerable there.
Cost
< $25 monthly
Date
Nov 18, 2011
Advice & Tips
I'm just ready too begin round 5 and plan to continue until the good Lord takes me (a long time from now I hope!). I began round 1 with 0.5mg/kg and have steadily increased OSC concentration each round to the 1.2mg/kg level needed for round 5. I've noticed definite improvements in diaphragm strength with the ability to comfortably breath w/o bi-pap a few hours a day. In fact, my last FVC measure (taken a few months ago) was a bit HIGHER than previous. I expect the next FVC to be higher still. Increased strength in right hand/fingers has also been experienced with improved ability to drive my chair and use my mouse. The ability to chew and swallow has also noticeably improved with less choking and more pleasurable eating. Another nice thing is that I can make it all night without going p, really been nice for my wife to sleep the night. Negative side effects have all but subsided during the "on" period. Only the mental fatigue (not really physical) noticed by many still persists.
With all the good news related to upper body improvements, I'm still experiencing degradation to lower extremities with decreases in leg strength noticed during transfers. I'm hoping that future rounds of higher concentration OSC might eventually slow/stop/reverse progression there as well. That along with a mouthful of vitamins and other dietary supplements such as taurine, amino acids, spurilina, probiotics, etc (a work in progress- http://www.als.net/forum/default.aspx?g=posts&t=49565) during the "off" period might just kill this beast.
Always lots of water too, lots of water, lots...
Cost
< $25 monthly
Date
Oct 19, 2011
Advice & Tips
I am now 5 days into the rest period of round 3 and so far have not experienced any degradation in the ability to use/click my mouse with my right hand. Since this is my most significant improvement noticed from the experiment, this is great news for me. I think that the higher concentration of chlorite taken this time has improved the positive effect through the rest period. Next round I'm going to increase concentration even more (targeting 1ml/kg) since side effects seem to be less with each successive round. The plan in round 4 will also include removing all antioxidants (CoQ10, spirulina, Vit E, C, etc.) from the diet during the active 7 day period and then add them back during the next rest period, which will be shortened to 14 days. Also during the rest period, I hope to add some supplements to help rebuild nervous system cells. Supplements here would include an amino acid blend, omega3 with DHA, Vit D3, and a Vit B blend.
Cost
< $25 monthly
Date
Oct 13, 2011
Advice & Tips
I just started round 3 on Saturday with concentration upped to 6ml of 5% solution per gal of water (0.79mg/kg of chlorite). Still seeing only modest gains so far but still gains. Side effects (fatigue, insomnia) seem to be less this round. Blood-Ox levels remain high, typically @ 98-99% with my bipap on (my FVC has remained consistent throughout @ 25%). No respiratory congestion experienced to date. My diet is still high in anti-oxidants (CoQ10, spirulina, Vit E, C, etc.). In round 4 I'll take those out for the 7 'active' days of the experiment.
Cost
< $25 monthly
Date
Sep 23, 2011
Advice & Tips
I have now completed the second round of the oral sodium chlorite experiment and am happy to report that the subtle gains in my right hand/arm have been sustained. I am now again able to drive my chair and use my left mouse button again. Side effects seem more tolerable this time around. Fatigue is still the most prominent side effect.
Cost
< $25 monthly
Date
Aug 27, 2011
Advice & Tips
I started this treatment on 8/20/2011. It is an attempt to orally replicate the amount of NaClO2 that is being administered intravenously through the NP001 trial. The plan is to take one Liter per day of a water-based NaClO2 solution for 7 days, then rest for 16 days, then repeat. The water-based solution is made up of 1 gallon of distilled water, 4 mL of a 5% NaClO2 solution, and 1 gram of non-iodized salt. After only one week of taking this solution, I feel that it has helped me regain some strength in my hands and legs. The gains so far have been subtle, but nonetheless, they are still gains. I am looking forward to the next week of drinking the solution, which will begin on 9/12/2011. I have experienced some side effects including mild headaches, fatigue, and watery stool. All of these are relatively minor and very manageable. I will report more during the next several months.
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Oct 22, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Nov 30, 2011
950 mL
Daily
?Can't tell
Mild
Always
Not at all
Nov 18, 2011
45 mL
Daily
?Can't tell
Severe
Always
Somewhat
Nov 17, 2011
45 mL
Daily
?Can't tell
Severe
Always
Somewhat
Nov 16, 2011
45 mL
Daily
?Can't tell
Severe
Always
Somewhat
Nov 15, 2011
45 mL
Daily
?Can't tell
Moderate
Always
A little
Nov 14, 2011
45 mL
Daily
?Can't tell
Moderate
Always
Not at all
Nov 13, 2011
45 mL
Daily
?Can't tell
Mild
Always
Not at all
Nov 10, 2011
?Can't tell
None
Always
Not at all
Oct 28, 2011
950 mL
Daily
Moderate
Mild
Always
Not at all
Oct 27, 2011
950 mL
Daily
Moderate
Mild
Always
Not at all
Oct 26, 2011
950 mL
Daily
Moderate
Mild
Always
Not at all
Oct 25, 2011
950 mL
Daily
Moderate
Mild
Always
Not at all
Oct 24, 2011
950 mL
Daily
?Can't tell
Mild
Always
Not at all
Oct 23, 2011
950 mL
Daily
?Can't tell
Mild
Always
Not at all
Oct 22, 2011
950 mL
Daily
?Can't tell
None
Always
Not at all
Date
Nov 30, 2011
Advice & Tips
Beginning of round 3. Pat is doing the lower concentration this time around.
End of day 1 of 5. Slight headache after each dosage, but only for about 45 minutes. A little fatigued by the end of the day, but that could be normal tiredness!
Cost
$50-99 monthly
Date
Nov 18, 2011
Advice & Tips
Reporting a stop as we will change dosage when Pat begins round 3 in 10-14 days.
Cost
$50-99 monthly
Date
Nov 17, 2011
Advice & Tips
Today Pat felt really bad but wanted to continue the course til the end. He had a lack of appetite for food and liquids today, but I tried to push both. He was pretty gassy today too. Another 3 hour nap today.
He had the excessive drool after each dose today, but it cleared up after about 20 minutes and he had no problem with drool during the rest of the day.
Major headache, major tummy queasiness and major nausea today. Pat describes it as having flu like symptoms.
We saw no noticeable effects, either positive or negative as far as Pat's ALS.
Cost
$50-99 monthly
Date
Nov 16, 2011
Advice & Tips
This morning Pat has some excessive drool after taking his dose. This is weird because Pat doesn't have a problem with drooling at all. After about 20 minutes, it stopped.
Pat felt really yucky all day today. I asked if he wanted to stop early and he did not want to do that. He took a 3 hour nap today which is out of the norm for him, but he just feels bad and is very fatigued.
No noticeable affect either positive or negative as far as his ALS symptoms.
Cost
$50-99 monthly
Date
Nov 15, 2011
Advice & Tips
Still an overall achiness combined with a loss of appetite, queasy tummy, fatigue and the "thick" feeling that coats his mouth after each dosage.
We haven't observed any effects due to his ALS either positive or negative.
Cost
$50-99 monthly
Date
Nov 14, 2011
Advice & Tips
Overall achiness today. Queasy stomach and no appetite. I'm still making Pat eat and try to make sure he drinks as much fluid as possible.
Pat is reporting a "thick" feeling coating in his mouth immediately after taking the OSC.
Fatigue today.
Cost
$50-99 monthly
Date
Nov 13, 2011
Advice & Tips
Pat is starting with the higher concentration of 17ml of 5% sodium chlorite mixed with 500ml of distilled water.
He will be taking 3 TBS a day, divided into to doses. 1.5 TBS in the AM and 1.5 TBS in the PM.
Today Pat had a slight headache all day. There were no observed effects as far as his ALS symptoms.
Cost
$50-99 monthly
Date
Nov 10, 2011
Advice & Tips
Getting ready to begin round 2 in 3 days. This time around Pat will do the higher concentration mixture.
We will mix 17ml of the 5% sodium chlorite in 500ml of distilled water. We'll see how he does!
Pat still has the ability to rub his eye and rub the bridge of his nose. The muscle twitching in the upper arms has stopped.
Cost
$50-99 monthly
Date
Oct 28, 2011
Advice & Tips
Reporting stop until next course begins.
Cost
$50-99 monthly
Date
Oct 27, 2011
Advice & Tips
Nauseated all day. Still getting headaches right after dosage, but they go away about 45 minutes later. The chills also seem to last about an hour, but then go away.
Today is our last dosage day. Pat will begin a 16 day rest starting tomorrow.
Overall this first round of OSC has been positive, with mild side effects and a huge unexpected effect of Pat being able to lift his arms (with the two arm lift) to rub his eyes!!!
Cost
$50-99 monthly
Date
Oct 26, 2011
Advice & Tips
Nauseated all day, but the gassy feeling has passed (!) Tired today and took a nap in the afternoon...not typical for Pat.
Observable (to the eye and to the touch) muscle twitching in upper arms. Pat hasn't had muscle twitching in his arms for at least 3 years.
Pat was able to rub his left eye today with the two arm lift.
Cost
$50-99 monthly
Date
Oct 25, 2011
Advice & Tips
Pat has been nauseated all day and very gassy (!).
But tonight, Pat was able to itch his forehead and rub his right eye. He was using his right hand and using the two arm lift technique but he was able to do it!!! We know he hasn't been able to rub his eye for over a year.
Cost
$50-99 monthly
Date
Oct 24, 2011
Advice & Tips
Slight headache in the AM, none in the evening. No observed effects.
Cost
$50-99 monthly
Date
Oct 23, 2011
Advice & Tips
Pat experienced a slight headache upon dosage intake, but it resolves itself in about 45 minutes.
Cost
$50-99 monthly
Date
Oct 22, 2011
Advice & Tips
Pat just took his first "dose" of OSC. Will take another before bed. Because he wasn't able to start until 6:30pm tonight, he will only be taking 1/2 of the recommended amount tonight. (We mixed 6ml of SC into 1 gallon of distilled water, with 1 gram of kosher salt. He will be drinking 950ml a day for 5 days)
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Oct 06, 2011)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Oct 28, 2011
1 L
Daily
?Can't tell
Mild
Always
Not at all
Oct 06, 2011
1 L
Daily
?Can't tell
Mild
Always
Not at all
Date
Oct 28, 2011
Advice & Tips
I am taking a concentrated dose of sodium chloride. I mixed 17ml of 5% solution with 500ml of water (and a pinch of salt). Taking 24ml per day. Today is my fourth of taking the solution and so far no improvement and extremely tired.
No other side effects for now just fatigue.
Date
Oct 06, 2011
Advice & Tips
For mi body weight (86 lbs), i mixed 2.25 mL of a 5% sodium chlorite solution in a gallon of water with a pinch of kosher non-iodized salt. Then drink 1/4 of a gallon (approximately 1 liter) per day for 7 days, then rest for 16 days. Repeat the process as many times as needed. Very mild side effects. About fourth day drinking solution, notice improvement on my swallowing. No other improvement noticed. During the 7th day when drinking solution, i was very tired and exahusted. Had difficulty getting up from sofa but after finishing the treatment was able to do samethings i was able to do before treatment but no better than before.
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