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RL Schafferr		Posted: Monday, February 20, 2012 4:42:39 PM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		I would go with the One that works. How would u tell using all three at once? Id use one for a month , each, and see what produces results .
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HappyPhysicist		Posted: Monday, February 20, 2012 10:41:51 PM
Rank: Advanced Member Groups: Member Joined: 4/20/2011 Posts: 577 Location: United States		Ron, You are right. I was going to stick with the pure sodium chlorite for this infusion cycle but it just hurts my veins too much. The Keavy's solution gives me a headache and the WF10 costs too much. It really baffles me. I mean the pure stuff is super pure, I don't know what could be causing the irritation. It just may be that such a oure solution is even more reactive than one with impurities. Anyway, at this point I think I am beyond being able to detect any results. I don't feel better when I take it anymore. I am keeping on it mostly because I am afraid I will go downhill fast if I stop. Ben If it is done in secret, it is done in vain.
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RL Schafferr		Posted: Tuesday, February 21, 2012 10:28:41 AM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		I'm wondering if it doesn't speed up progression , Ben. At time it does to me. But vie retained some gains partial, anyway
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ichisan		Posted: Tuesday, February 21, 2012 11:33:11 AM
Rank: Advanced Member Groups: Member Joined: 12/4/2011 Posts: 542 Location: United States		RL Schafferr wrote: I'm wondering if it doesn't speed up progression , Ben. At time it does to me. But vie retained some gains partial, anyway My wife's experience is that OSC only works for a while and then the disease somehow figures out a way to beat it. She is no longer seeing any improvements, only the side effects. It's discouraging, to say the least. Louis
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HappyPhysicist		Posted: Tuesday, February 21, 2012 12:05:02 PM
Rank: Advanced Member Groups: Member Joined: 4/20/2011 Posts: 577 Location: United States		Louis, I am afraid this is the conclusion I am coming to, that sodium chlorite is magical but temporary. Ron, The thought that it might speed progression is always a worry. Especially given that of half the drugs tested for ALS actually did speed progression, the other half did nothing. But so far, I haven't seen any indication that it speeds up progression. But it is a possibility. The most dramatic example I know if is Persevering's. http://www.patientslikeme.com/forum/als/topics/78961?page=37 But if you look at all of these graphs it seems that stopping chlorite will return you to your previous rate of progression and possibly return you to where you would have been if you had not taken it at all. So far for me I remain well above where I would have been had I never taken sodium chlorite. I estimate I that I would be 4 or 5 FRS points lower than I am now had I never taken sodium chlorite. I am sure Pers will do another analysis of the data now that just about everyone is finished and we should get some information on how people are doing longer term. Ben If it is done in secret, it is done in vain.
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HappyPhysicist		Posted: Tuesday, February 21, 2012 3:31:23 PM
Rank: Advanced Member Groups: Member Joined: 4/20/2011 Posts: 577 Location: United States		Today I infused 40 ml of WF10 in a 250 ml bag of saline and just like last time no headache and no pain at the IV site. No noticeable improvements either. If it is done in secret, it is done in vain.
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Surfer Guapa		Posted: Tuesday, February 21, 2012 5:55:45 PM
Rank: Member Groups: Member Joined: 1/26/2011 Posts: 22 Location: United States		Y'all should check Pers' eval on PLM.
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ichisan		Posted: Tuesday, February 21, 2012 10:27:53 PM
Rank: Advanced Member Groups: Member Joined: 12/4/2011 Posts: 542 Location: United States		At this point, I see no reason to believe that my wife will obtain greater benefit from either IVSC, WF10 or NP001 that she's not getting from OSC + O2. She is no longer seeing improvements although some days are slightly better than others. I think that the best she can do is to maintain a low but continuous dosage of OSC while being careful not to stress her immune system with too many doctor-prescribed medications. We have learned the hard way that some of the things that others consider beneficial are in fact detrimental. At the top of the list of things to stay away from are vaccines. As Nemesis pointed out elsewhere, vaccines contain something called an immunologic adjuvant that spurs the immune system into high gear. This is bad for the ALS sufferer because it causes his/her immune system to increase its attack on its own cells, aggravating the problem. My wife was unfortunate to experience this first hand. Her condition took a dramatic turn for the worse within a day after being vaccinated for the flu and tuberculosis. She lost most of her previous gains practically overnight. It's been several weeks and she's still trying to recover from that ordeal. Another thing that PALS should stay away from are antioxidants. In the past, my wife has experienced abnormally fast progression while taking a bunch of antioxidants. I believe that antioxidants causes the faulty immune system of an ALS patient to redouble its erroneous attacks. Louis
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HappyPhysicist		Posted: Wednesday, February 22, 2012 11:08:35 AM
Rank: Advanced Member Groups: Member Joined: 4/20/2011 Posts: 577 Location: United States		Here is a repost of Pers's WF10 evaluation: Quote: DOSAGE & ADMINISTRATION: Infused 40 ml WF10 per day for 4 consecutive days. It was diluted in 400 ml 0.9% saline IV Bag and flushed with saline to ensure 100% usage. This is 0.5 mg/kg per day, thought to be equivalent to 2 mg/kg sodium chlorite and same amount of active ingredient as high dose NP001. Infusion times were varied from 2.5 hours to 1.5 hours. Began 17 weeks from last NP001 infusion. BENEFITS: Hands uncurled mostly and have become more "flexible" and dexterous, beginning day 1. Walking has improved significantly. Balance, gait speed and foot lift improved and were noticed by several others on 3rd day, without me commenting. Continued improvement on day 3 thru 6. Was highly dependent on cane, now again am confident without. Speech has improved, to where some words and phrases are understandable again. Swallowing better. Cough far more productive from day 2. Elimination of minor day drooling, and even while sleeping. SIDE EFFECTS: No site pain was experienced, even when using same catheter on consecutive days. Similar to my experience with the NP001 phase 2 trial, I got drowsy with each infusion, with mild dizziness. This was similar to my first infusion week with NP001, building on consecutive days and lasting over 24 hours for the last infusion. It may have been worse than for NP001. Slept most of day following last infusion. As with NP001, fasciculations increased in intensity and frequency immediately. Monitored BP and heart rate. No issues. I was pleasantly surprised to hear this. I was starting to get pessimistic about the long term potential of sodium chlorite. I for one plan to stay on it indefinitely. My completely unfounded opinion is that SC calms the autoimmune response which contributes to progression, but the underlying disease continues. Bottom line is that it should slow the progression. In Per's case. He went a prolonged period of time without SC and so his immune system may have kicked into high gear again. Now that he is back he should improve a bit and then progress more slowly. Another thought is that we all react differently to sodium chlorite. Pers has a particularly good response to it and perhaps he may even stabilize on it. Ben If it is done in secret, it is done in vain.
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Olly		Posted: Wednesday, February 22, 2012 1:33:44 PM
Rank: Advanced Member Groups: Member Joined: 7/4/2011 Posts: 1,289 Location: United Kingdom		For what is is worth I tend to get increased fasculation about 1 hour after taking OSC. Somedays I don't have fasculation and maybe on those days, due to other factors, the amount making it into the blood stream is decreased? Into the heart, an air that kills, from yon far country blows. What are those blue remembered hills, what sphires what farms are those. That is the land of lost content,I see it shining plain, The happy highways where I went and cannot come again
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HappyPhysicist		Posted: Wednesday, February 22, 2012 3:48:19 PM
Rank: Advanced Member Groups: Member Joined: 4/20/2011 Posts: 577 Location: United States		update: Day 3 of infusions. Today I am using Keavy's SC. 4 ml into a 500 ml bag of IV saline. Interestingly, today I have no headache. Last time when I used KSC I felt a headache soon after the infusion. I think I'll do it again tomorrow. If I can infuse KSC without major side effects then I won't pursue PSC (Pure Sodium Chlorite) too much further. Although I ordered some weak hydrochloric acid and will try to lower the PH of PSC and see if that helps. I was concerned that maybe it might not be a good idea to inject HCL but apparently is is used in IV preparations: http://www.globalrph.com/hydrochloric_acid_dilution.htm This page warns of possible tissue necrosis but the concentrations I would use will be much much lower than this. Don't worry, I won't rush into this. I will check and recheck my calculations before I attempt this one. Ben If it is done in secret, it is done in vain.
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SilverFox		Posted: Wednesday, February 22, 2012 7:16:23 PM
Rank: Advanced Member Groups: Member Joined: 6/27/2011 Posts: 436 Location: United States		Hello Ben, Just to give you an idea of what would be involved with this, I mixed up some 0.1N HCl. You talked about using 200 ml of the 0.1% sodium chlorite so I also used that quantity. 0.1N HCl has a pH of about 2.3. 0.1% NaClO2 has a pH of about 10.5. The idea is to lower the pH of the 0.1% NaClO2 to about 5.5 and let it activate for 24 hours before adding it to your IV saline solution. I put 200 ml of 0.1% NaClO2 into a glass and added 0.1N HCl in small amounts while following the pH of the solution. It took 6 ml of the 0.1N HCl to reduce the pH down to 5.5. This means that your 500 ml saline IV bag would have 200 ml of 0.1% NaClO2, 6 ml of 0.1N HCl, and the rest as saline solution. For those just tuning in, Ben is experiencing discomfort when he injects the pure NaClO2. I had an idea that a possible cause of the discomfort may be a chemical reaction with his blood. The addition of HCl will reduce the reactivity of the pure NaClO2. This is a wild guess on my part and Ben will have to evaluate all of this before moving on with it. It sounds like he may have found another way to work around this. Tom
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ELYSEE RECLUS		Posted: Thursday, February 23, 2012 12:48:04 PM
Rank: Advanced Member Groups: Member Joined: 8/26/2011 Posts: 441 Location: France		i started wf10 last week, low dose 20ML each infusion, five days, no improvement to report, no side effect i hope it will be better next infusion, if no improvEMENT next time i will go on 40ML beachbabe and dog saw effect after the third cycle
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millstones		Posted: Friday, February 24, 2012 5:27:09 AM
Rank: Advanced Member Groups: Member Joined: 9/14/2011 Posts: 438 Location: United Kingdom		Marcel, Pers was using 40ml in 400 ml saline and seemed to get a positive reaction so maybe you need to go for that. On the NP001 there is a half dose and full dose and placebo and the reported improvements are from 1/3rd assumed to be the full dose so it seems likely the half dose isn't doing it. John
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ELYSEE RECLUS		Posted: Friday, February 24, 2012 8:37:59 AM
Rank: Advanced Member Groups: Member Joined: 8/26/2011 Posts: 441 Location: France		thank you John, you are right, next time i ll go on 0,5mg/kg.
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nirvis		Posted: Thursday, March 01, 2012 5:40:33 AM
Rank: Newbie Groups: Member Joined: 3/1/2012 Posts: 4 Location: United States		I'm interested in giving this a try. I am in the earlier stages of what so far is being diagnosed as PMA (EMG signs and weakness in both legs, fasciculations all over the lower half of my body, NCVs normal, elevated CPK, no Lyme, MRI clear, still waiting on anti-GM1 results). Like everyone here, I'd rather not wait around for things to get worse while I can still walk. Ironically, I did bioengineering PhD work in neurophysiology, but it turns out that my motor neurons aren't very impressed by this. Here is what I gather from the WF10 and NP001 technical data and patents, and what my plan is to recreate a treatment similar to NP001: Code: -- WF10 (TCDO) -- concentration (undiluted): 60mMol ClO2(equivalent) / liter dosing: 0.5ml/kg * 60mMol/l = 30uMol/kg schedule: -- NP001 -- concentration: 2mM to 3mM ClO2 pH buffered to 7.62 using monosodium phosphate monoyhdrate possibly diluted with NaCl IV solution? dosing: assume same as WF10 (30uMol/kg) schedule: -- my protocol -- * 250ml 1000ppm NaClO2 = 1mg/ml / (NaClO2 is 90.44g/Mol) = 11mMol/liter = 2.75mMol * pH adjust with biotech grade monosodium phosphate monohydrate / 0.1M NaOH to pH 7.62 with pH probe * 750ml 0.9% sterile NaCl (already in bag) [from the patents I am unclear if they pH adjust before combining with pH 5 saline, or after] dosing: 2.75mMol / 95kg = 29uMol/kg concentration: 2.75mMol/liter = 2.75mM (in NP001 range) Any thoughts on this? As far as dosing cycles, I'll probably try for 4 or 5 days and see how it goes. I won't have a PICC line, so putting a cannula in each day won't be fun. Maybe use a saline or heparin lock and just switch it out every 2 days?
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Persevering		Posted: Thursday, March 01, 2012 10:27:55 AM
Rank: Advanced Member Groups: Member Joined: 7/20/2010 Posts: 1,296 Location: United States		Nirvis - I suspect most are lost when you start using the unit moles. I once determined that when WF10 is administered at 0.5 ml per kg body mass, this is the same saying Chlorite is adminstered as 2.0 mg per kg. The high dose for the NP001 phase 2 trial was 2.0 mg per kg, but it is unknown whether the mass refers to chlorite or sodium chlorite, as Neuraltus has used both in different reports. If they matched 2 of the phase 1 trial doses, it refers to 2.0 mg sodium chlorite per kg. This is equivalent to 0.37 ml WF10 per kg body weight, or 1.49 mg Chlorite per kg. I am confident that NP001 is buffered with monosodium phosphate prior to dilution with saline, and the pH as injected is lower. In the NP001 phase 2 trial, the total volume injected (NP001 plus saline) was only 250 ml, infused over 30 minutes with a 25 ml saline flush. Even with NP001, some experienced infusion site pain when the same IV site was used 2 or more days. What is your source of sodium chlorite? per·se·vere [pur-suh-veer] - to persist in anything undertaken; maintain a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly.
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coder0000		Posted: Thursday, March 01, 2012 11:40:00 AM
Rank: Advanced Member Groups: Member Joined: 2/24/2012 Posts: 65 Location: Canada - ON		Ben, Ron, Louis, You guys all state that you're no longer seeing any improvements from SC. Ignore reversals. What rate is ALS progressing while you're on SC? Is it stable, is it progressing slower than before, progressing at the same rate as before, or progressing faster? ie Are any of you suggesting that there is no longer a benefit to staying on SC (ie progressing at same rate or faster than pre-treatment)? Speaking of FRS, does this need to be professionally determined, or can you use an online calculator like this: http://www.outcomes-umassmed.org/als/alsscale.aspx
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SilverFox		Posted: Thursday, March 01, 2012 11:43:32 AM
Rank: Advanced Member Groups: Member Joined: 6/27/2011 Posts: 436 Location: United States		Hello Nirvis, It is the nature of chlorite compounds to become unstable at lower pH values. I believe the buffering is done prior to mixing it in the saline bag for use. Tom
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RL Schafferr		Posted: Thursday, March 01, 2012 1:26:05 PM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		coder0000 wrote: Ben, Ron, Louis, You guys all state that you're no longer seeing any improvements from SC. Ignore reversals. What rate is ALS progressing while you're on SC? Is it stable, is it progressing slower than before, progressing at the same rate as before, or progressing faster? ie Are any of you suggesting that there is no longer a benefit to staying on SC (ie progressing at same rate or faster than pre-treatment)? Speaking of FRS, does this need to be professionally determined, or can you use an online calculator like this: http://www.outcomes-umassmed.org/als/alsscale.aspx Code... U aska question that cant be answered. Progression varies in ALS, day by day. Some days u feel fine. Next day u can't lift a arm .I am still progressing but who knows how fast? And who knows if SC slowed it down? No one knows. ALS ebbs and flows, stops, plateaus, moves around on the body from place to place. I do know I've kept some gains. 75% of them .Keep in mind I'm a slow progressor anyway. 9 years . If u have the fast ALS, I imagine they can tell better. FRS is a joke. Depending who takes it, answers vary. And if u happen to go on a good day, it can jump 3/4 points. If I feel like ****, I think it's progressing faster. If I feel good, I believe I'm stable. It depends on what day u ask me . Most if truthful, will tell u same thing.
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