NP001 updates?

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diagnosed2016

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Just wondering how others are doing in the study. Hubby just had his 3rd infusion. His energy spiked afterward and lasts most of the month but it hasn't stopped his progression at all. I actually feel like it's sped up a bit since he started the trial.
 

GregK

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Did your husband have a high CRP, C-reactive protein?
 

diagnosed2016

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He has the biomarker they required to get into the dtudy
 

Wburell

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So I just had my 1st day of 2nd infusion cycle. Obviously no idea if I'm getting the drug or placebo. I will say before the trial I was falling almost daily due my knee buckling and lack of control. In the first month I fell only once. My energy level was sky high for 3 weeks and felt like I hit a wall and came back to reality. Today same high energy and increased fasciculations. Overall my balance just feels better. Not sure if it's high false confidence or not. I'm a slow progresser and my score has been at 41 since Feb. Also my fvc was 117% on day 1 and 111% today but I don't think I followed the instructions well. I'll update as I go through the trial.

As a heads up from what I've gathered on WF 10 research antioxidants can diminish the effects. Nothing proven here obviously but just working off what others have said and the assumption that np001 is essentially a cleaned up wf10. My doctor didn't say anything about it being harmful but I removed my d3 from this infusion cycle.

One note of interest though. I have reduced bone density in my leg with foot drop and severe knee pain. For 2-3 weeks after my first infusion my pain was severely reduced and my leg temperature normalized a bit. I used to have extremely hot or cold knee to foot and now it seems to stay more regulated.
 
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Wburell

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Also as a note about crp levels all people are screened for high crp unlike the last trial. Without the biomarker you are excluded. Great to see biomarker specific trials since we are all different. Truly great
 

GregK

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Also as a note about crp levels all people are screened for high crp unlike the last trial. Without the biomarker you are excluded. Great to see biomarker specific trials since we are all different. Truly great

I'd be interested to know what they consider high for the trial.

My crp was 9.72, which is very high even tho I appear to be on a plateau.
 

NothingButLove

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My wife completed her fourth infusion. She goes for her fifth next week. We have no idea if we're getting the drug or a placebo. What ever we're getting, it's not doing anything. My wife continues to progress.

Rob
 

diagnosed2016

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That's interesting about the antioxidant conflict. I've taken grape seed and alpha lipoic acid out of the vitamin bin and we will see how next weeks infusion goes. This will be the 4th. Physical gain has diminished but energy remains high for longer each cycle it seems.
 
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