If i can make a suggestion maybe this thread should be put into the stickies area and added to by people as they progress and get better.

good idea... just PM a moderator!

MrsD, you are correct about we "newbies". I'm incredulous at all the information. I discovered this site only a few days ago and I've such mixed emotions. Mostly upset with myself that I've just sat back for 19 years and done nothing about my neuropathy. No one ever took it, the disease, seriously. I had a young son to care for, so I just kept putting one foot in front of the other.....when I should have also been researching. Back in the late 80's we did try, but there was so little information available....but that's no excuse. It wasn't until I couldn't be intubated that it was taken seriously.....and I've no one to blame but me. I'm going to set aside time everyday to read the PN threads.....I'm going to learn......and take charge of my care!

is good to hear but don't be so hard on yourself Lucky,you son is lucky
what you were going through you stilll went to his events,you both
should be happy that now you are going to take charge of your health.
Good wishes to you and your family,and i'm so glad you back,I like your
spirit yes you have it. And good luck on your new move, Hugs to all Sue

Joe--I had the same thought as you; now you've beat me to it! This thread ought to be a sticky, to which only success stories can be added. People need to be able to read about the successes when they come on as newbies and read about all the tests and protocols. It's overwhelming at first, and good news would help.

As to my own supplement regimen-it's taken from stickies, Mrs D's and Wing's recommendations, and my own thinking of anything that's good for mitochondria is good for axons.

Specifically for the PN
Fish Oil: 2- 3 Gm
Acetyl L Carnitine: I can't find a bottle just now with my dosage, but it's the top of the recommended amount, as my carnitine levels run below normal
CoQ10: 100mg twice a day. Now as Ubiquinol
Antioxidants: I take caps made to prevent macular degenereation: they are variously known as EyeCaps, Visivites, of Preservision. They contain Vitamin c, Vitamin E, Zinc, Copper and Lutein.
Folic Acid and methylcobalamin a few times a week.
]SAMe-in spurts, not every week.

For general health and other issues:
Vit D3 800 IU/day
DHEA 50/day

I've had trouble with Calcium & Magnesium combinations and apart, nver finding the exact right combination for me, so right now just try to eat dairy. But I will start CalciumCitrate again soon. I know I need it.

In addition to what she takes, I also take two B-50 formula B-complex a day, and good quality calcium/magnesium daily.

I put a lot of stress on a very healthy diet, anger and stress management, and daily exercise. Having a very active young dog is a powerful motivation to get out twice a day walking, including a daily trip to a big off-leash dog park nearby. The picture is of Rusty on a trail near where we live. Double click the thumbnail to expand the picture.

Attached Images

Rusty in Tierra Santa.jpg (61.7 KB, 1614 views)

interested in mitochondrial failure. A lot research being done today is
pointing in that direction.

1) nerve damage from HIV drug prevention is mito in nature. We've known this for a decade now.
2) the new autism research is pointing to mito failures induced by vaccines in babies.
3) We now know that statins damage mitochondria..and that is probably how they induce PN as a side effect.

If the autism research shows this is a direct link (which I think is very likely),
then ADULTS who get that dreaded flu vaccine every year are exposing themselves to this stressor. The genetics research will help with this, and it might be that certain people with certain combinations of genes are more prone to mitochondrial issues.

Dr. Bruce Ames who developed the Ames test for carcinogens that our FDA uses still, is researching aging. I used to have a paper of his, that I put up about his beliefs that mito damage can be minimized with nutrients. He actually makes a supplement called Juvenon.
If you Google that product there are many papers on that site to explain how this works. But because it is a commercial site, I won't
link to it (there are rules here about that). It is easy to find.
Here is one abstract of his work:
from http://www.annalsnyas.org/cgi/conten...ract/959/1/133

He also has a paper out there on B-complex. I can't find it now, PubMed is down for maintenance. But in essence he believes that failures in B-complex metabolism account for many diseases we develop with aging. We do know now the folate system is very fragile and prone to failure (MTFHR) and must be helped along.

The nervous system gives us signals early on that something is not working right in our bodies. But when other organs fail (liver, kidney etc) there is a long lag before we get symptoms. So I think the signals just may be mito failures for many people. This signaling by the nervous
is sort of a bells/alarm to pay attention!

Many papers are on PubMed:
Use these keywords:
Ames B + antioxidants
Ames B + mitochondria
Ames B

example:
It is interesting to note that r-lipoic is showing up now in papers.