Hi there
I've lurked on the forums from time to time, I thought I had actually created an account, but I couldn't find it.
Just to give some background leading up to what's happened since I started taking Niagen a few months ago, I experienced a neurological event back in June of 2006 - 6-6-06 to be exact. They thought at first I had had a stroke. But the way the neurologist acted, she seemed very puzzled by the results of the MRI. A year later, no I didn't have a stroke, they didn't know what it was. But from that event I started to experience a sudden and rapid deterioration neurologically, in cognition, memory, balance and ability to use my muscles, etc - I was having pain, profound exhaustion and brain fog, and neurological symptoms of all types. If I was exposed to intense sensory overload - such as going to a swim meet, I would be in bed for days, barely able to move, in intense pain and hardly able to form any thoughts.
Because I had so many symptoms I wasn't easily believed by the doctors. Early on I was seeing specialists - one invited me to see him, a cardiologist, because I was researching homocysteine (mine was elevated) and a researcher had told him about me. He was concerned about my homocysteine levels and told me they were dangerous and needed to be brought down. He noted how my blood was very thick and related this to the elevated homocysteine.
After seeing an MS specialist a year after the onset of all of this, who treated me very poorly, I got angry enough to do more research. This is when I found that I might need large doses of Methyl B12. I gradually increased sublingual dosing from 3,000 mcg/day to 20,000 mcg./day and I was seeing improvements. And my homocysteine had quickly dropped well into normal. But I could not convince my doctors.
This tug of war ended up with me being hospitalized with massive blood clots to both sides of my lungs. 3 months earlier I had gotten very sick very fast with the flu and developed pneumonia. My coughing was so bad I had to stop taking the Methyl B12 because they were irritating my throat too much. When I get sick I get a bad reactive cough. I begged for injections. I was refused. I was sick for 3 months. At the end of this my homocysteine had shot back up, my blood had thickened, and I ended up with these blood clots. I kept trying to tell doctors I needed the injections, that this was confusing the picture, but I was treated as if I was a nut. It didn't matter that I had a degree in nursing. They "knew" I didn't need it. It took them 3 days to figure out I had these massive blood clots in my lungs, They had no idea how I was oxygenating let alone not in critical care. They didi find I have a prothrombin 2 clotting disorder, heterozygous so it affects venous clotting.
I saw a national expert on this particular clotting disorder. She told me that the disorder, my being sick and inactie for 3 months were not enough to explain the severity of the blood clots. She also did not seem to understand the importance of the methyl B12. She put me on warfarin for life.
I felt very alone in all of this - my family didn't understand, my doctors didn't understand. I was mostly on my own. I spent the next several years trying to get my doctors to see the relationship between my symptoms, my labs - specifically the homoscysteine and High Sensitivity CRP, B6 which were all abnormal if I wasn't taking methyl B12 and would all normalize if I did take it. I kept trying to get them to see that there was something wrong with what my body was doing with B12. They kept telling me I didn't have a problem because my B12 levels were always normal. I even went on a vegan diet and got them to check my B12 levels soon afterwards and they had plummeted to the very low 200s. I said see -there is a problem They still didn't do anything or really listen to me.
so I pushed it as far as I dared - I stayed off the B12 for a couple of years, then this past summer I realized this is simply stupid. I need to go back on it or I am going to do irreversible damage- maybe already had, and I decided to take matters into my own hands and get my genome mapped through 23 & Me, then have the methylating data run through genetic genie.
The results were a smoking gun. I have many methylating defects, and one homozygous one in particular causes the body to rapidly use up its methyl B12, necessitating dependency on large doses daily to keep up.
I gave the results to my doctor and she had a worried look in her eyes. But they still don't know what to do for me.
Soon after this, I found my research was leading me to suspect mitochondrial dysfunction. What is interesting is that my brother began having similar symptoms which started to cause rapid deterioration at the same age as mine did. He is 3-4 years younger than me, and we were coming to our conclusions independent of each other.
We got to talking over the summer, sharing notes. This is when I stumbled onto information about Dr Sinclair's research at Harvard with NAD+, and Niagen. My brother decided to try it first, and he immediately noticed a difference. I waited a couple weeks then decided to try it.
For the last 9 years I have been telling my doctors I feel like I am this big building with all the lights on, the machinery running, the ventilating system running, etc. Then suddenly the power goes out, and the backup generators come on, and now everything is limping along. For instance I would be walking and suddenly the muscles in my legs would get harder and harder to move - not tired - but more like they were turning to stone, petrifying. If I sat down for several minutes, I could go a little ways before it happened again. As my legs would get harder to move, the pain level would go up quickly. This was on good days. On bad days I could barely walk across my living room floor, and at that, I couldn't stand upright, but had to lean heavily on a cane, all bent over in a great deal of pain. On really bad days I didn't try to walk hardly at all. All I could then do was lay in my reclilner. On good days I hardly dared to walk down to the sidewalk for fear I couldn't walk back up to the house. Taking walks down the street were rare and short and only if I had others with me.
Along with this inability of my muscles to respond, I would experience something I find very hard to describe - I would feel like inside everything was unstable - my blood pressure, my heart rate, vertigo, dizziness, weak, as if I would collapse any minute, and all I could do was get in my recliner with my feet up and my head down and just be still until it passed. It is like all my systems just going wonkers at the same time.
So I started the Niagen.
Some people here are not going to believe me, but this is what happened.
One capsule - ONE capsule - and I was suddenly able walk normally. This is no exaggeration. And the feeling of instability, the unstable feelings were gone. I felt like I had been plugged into a nuclear power plant. I suddenly had a constant supply of energy I haven;t experienced in 9 years. The change was very dramatic, like night and day. I didn't realize how much had changed until we went to central Oregon to the observatory this past halloween for the eclipse. My family started trudging up the hill and I followed thinking nothing of it. It wasn't until I was half way up that I realized what I was doing and how, and I could hardly believe it.
As long as I take the NIagen, I can do things with my family and friends again and by myself. If I wait too long to take it, the old symptoms start to return, so I take another one and shortly they are gone.
My daughter just got married, and I was going non stop from 7 am that day until midnight - and it wasn't until towards the end I started to have problems and that was because I hadn't taken any Niagen with me to the reception. I crashed the next day, but it wasn't nearly as bad as crashes have been in the past, and I just loaded up with the Niagen throughout the day and by the end of it, things were pretty much back to normal.
I think this must mean I have a very serious mitochondrial issue - and this is addressing it very dramatically. I think that someone else who does not have a serious mitochondiral dysfunction is not going to notice the benefits like I have. I don't know how many people have such a dramatic experience as this, but I wanted to share.
I still have symptoms, and I still need to take the methyl B12, but the Niagen has been a huge turning point in my life.