I meant page 2 of the stickies, near the bottom. Oh the embarassment!

The tickle test is to see if you feel the tip of a short length of nylon monofilament line of various stiffnesses stroking the area, i.e. how sensitive that area is to a very light touch. There are areas of my upper feet that are still numb to that.

Healing from peripheral neuropathic damage and how that damage trains your brain to inappropriately feel intense pain with every little stimulus is a very slow process. Progress is measured in six month or yearly intervals, so if you start a program that you think has a good chance of working with you, stick with it for at least two years.

As a general principle, if something is good for your cardiovascular health, good for your immune system, good for your general health, it is good for your nerves and brain and will allow healing. The supplements we need aren't obvious, but good diet, avoiding high glycemic index foods, daily exercise, weight control, not smoking, not drinking to excess, clean living (by that I mean avoiding drugs and other toxins as much as possible), stress reduction, enough rest, etc. are obviously good for you, and can only help your PN.

It is very important for the newer members here to realize that THEY
THEMSELVES have to become an active part in their handling of PN. One cannot expect a doctor to do the same type of intervention for PN that they do for say, pneumonia. So people do expect something and when they get NOTHING, it seems very unfair and frightening.

Because there are so many types of PN...it is best to know what you are
dealing with. So diagnosis is important up to a point.

But for day to day management of pain/discomfort, and for suggestions to
assist and speed healing if possible, the medical community is very ineffective.

Rose (B12) and I have been here over 10 yrs now (on this and the other forum).
I brought P5P and magnets to the boards long long ago. I also brought essential fatty acids (omega-3) research and in some cases was even attacked for that! Now we see transfats removed from our food and omega-3s now added to eggs/mayo and peanutbutter! And I search constantly for more ideas and offer my experience with my own searching for relief.
Now I see P5P in an RX designed for neuropathy! How cool is that? (Metanx).
And the reverse, the methyfolate I recommended for years has been sequestered by Merck to on RX use (not an FDA move), just because they want to sell more and make more $$ on RX products! Metafolin was SO INEXPENSIVE OTC...it is a crime that this happened!

So over the past 10 yrs, alot has happened to PN patients. I only hope that the new members read our board and the stickies to learn what their options really are!

Edit to add in 2012... since this post was written, Merck has released methylfolate BACK to OTC status on a limited basis. Solgar offers it OTC in 800mcg tablets. I guess they didn't make as much $$ as they thought by sequestering it to RX

After reading about Metanx, I looked for the right kind of Folate so I could make my own Metanx. I found Source Naturals "Megafolinic" at iherb http://www.iherb.com/ProductDetails.aspx?c=1&pid=7735. Isn't this the right stuff?

Ann

is not exactly like methylfolate...but it is close. It is partially activated.

It is the OTC version of the Rx Leucovorin (which is given to people having
chemo). It is ironic... methylfolate gets put into RX only by Merck, and an
RX only comes off into OTC status. It is all about money.

I researched folinic version and there are papers showing children who do
not respond to regular folic acid supplements, DO respond to folinIC.

So that is as close as you are going to get. There is one OTC item online
that is very expensive that Merck is still selling to. It is a mixture of B12, B6 and methylfolate called Homocysteine defense something or other. I can't recall the name of it now,
but it was VERY expensive...over 30-40 dollars a month.

There is one new thing about high dose folic acid (and the other derivatives):
New studies have just come out on young women who were taking high dose folic acid
to prevent spina bifida in their fetuses. Some took 5mg/day, if they were high risk.
These younger patients are showing up now with colon cancer at higher rates.
The folate is thought to be a stimulus to those with polyps or genetic risk for colon cancer.
So if you take the folinic or folic, I'd stick to the 800mcg dose for now, until more
information is forthcoming. (Metanx is VERY HIGH in methylfolate--2.8mg I think) Any nutrient has the potential for fueling cancerous cells..
so I think those cells have to be present in the first place. This is why oncologists often
give conflicting advice. It is hard to know which way a patient will go... 1) improve with
supplement support, or 2) fuel the cancer and undermine the chemo.
Leucovorin has been used for decades for chemo patients...so I don't know what the
new studies will show, if anything.

Edit 2012... Merck decided to release methylfolate back into some OTC products. Solgar is one who now offers it in 800mcg tablets.

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.

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