Quote:
Originally Posted by mrsD
There have been people who use quite a long list of supplements.
Some of their posts can only be found using the search function.
One was Wing42... and when people mention the stickies, usually that is what they are looking for:
http://neurotalk.psychcentral.com/post9580-18.html
http://neurotalk.psychcentral.com/post9583-19.html
http://neurotalk.psychcentral.com/post9586-20.html
Those 3 posts are what worked for him.
I tend to have people start off with the most common deficiencies and fix those first, then add in other things according to their symptom development and history. Some people have DNA damage and so supplements for them would cluster on DNA mitochondrial support. (mostly from toxins and drugs)
Others have diabetic or alcohol induced PN and ALA (or the new stabilized r-lipoic acid and benfotiamine would help more that that.
So therefore there is no one "list" that would be better for everyone, since there are so many types of PN.
For explanations of the various common supplements there is my supplement thread.
http://neurotalk.psychcentral.com/thread121683.html
The subforum above has several posts now discussing the various supplements..this is its link:
http://neurotalk.psychcentral.com/forum119.html
Yes, R-lipoic is better absorbed, but you need to choose the STABILIZED form, which is also called NaRALA on the label.
Doctor's Best makes this. 100mg a day is often enough.
The old ALA used in high dose should be taken on an empty stomach...1/2 of it is not active. You can spend alot of money on this type, whereas the STABILIZED type is less expensive by far to use.
NAC doses are typically 600mg a day (up to 3 times a day if tolerated).
Flares seem to occur for everyone to some extent. The Weather can do it...with extreme lows when storms move in triggering pain. Some people with autoimmune issues have waxing and waning periods when their disease becomes more active, and then later on sleeps.
People with inflammatory types of PN can see improvement during flares with aspirin (in AlkaSeltzer form) or other NSAIDs.
Fish oil can help this type as well. |
Thank you, I found them. I'm still on fire today which is a sign for me that this darn disease is progressing. Each and every time I've had an expolosive night with out diminishing pain the next day, the disease has ramped up. I was pretty "stable" with extreme burning mainlly sticking to my feet (but needed neurontin to function) ad then this past Jan, it began spreading up to the mid thigh. Severe, severe pain. The vitamins seemed to put the fire out for the most part, but now im confused. I'm on IVIG through a Yale neuro who uses it as a "proven" treatment for pain in people with SMF neuropathy as a result of long term lyme disease. Welp-it hasn't done a thing to reduce my pain and only confirms (to me) that I don't have an auttoimmune issue. I've been on it since Oct with zero benefit. Since he claimed to have a 100% success rate, I've been hoping for the same result.
My skin biopsy is still w/in normal limits but is HALF of the value it was in Dec of 2011. That plus this rapid increase in pain and location, only proves I'm progressing despite the IVIG intervention.
The only thing I've stopped is the ridiculous amounts of antibiotics I was taking for the lyme. The neuro wouldnt treat with IVIG unless I stopped abx prescibed by a lyme specialist. Knowing that long term use of abx can also CAUSE neuropathy by decreasing B's and was only making me so, so sick, I had no problem stopping (ive been on a for 14 years icluding years of IV abx).
I am beyond frustrated that I CAN'T figure this out!! I was NEVER good at solving mysteries and even used to get my butt kicked in Clue as a kid
Help!!!