Well, I'm still encouraged by this news of Dewey's. I'll just bet he'll come around in the long run. That's what I'm expecting to report one day soon. I'm taking my cocktail, much of which Mrs. D has recommended on her posts, and others have helped as well. So I'm looking forward to a positive outcome. I haven't started exercising yet because it's too cold outside, but maybe I should do floor exercises until I can walk outside, or fast walking is what I really want to do. And that's for stimulating my feet, plus to lose this extra 10 lbs that the Neurontin and Lyrica have put on me. I just can't seem to get it off just watching what I eat. Any suggestions for anything else that might help? I want off of the Lyrica so, so bad, and that's why I'm praying that these supplements will work. I want to be healed, not just mask the problem. I hope to have blood work done in March, and I'm asking my doctor to check me for a B12 deficiency. Can anyone point me towards anything else I might ask him?

Thanks to all for sharing. It really does help us who are new to this, in much pain, and are still trying to find our way to some positive results. You all rock!

KK

If you are being tested while already taking B12, you may not show a deficiency.

Testing is best done when you haven't started B12 yet.

It can show that you are absorbing your supplement correctly, however. Most B12 serum tests to not go above 2000 so your real value if high cannot be measured accurately.

I'm just beginning, Mrs. D, so would you recommend I stop and wait until I go back, which would be March 11? I'd really love to know what the root cause is, and from reading all the posts regarding it, I need to know to get to the bottom of it so I'll know how to treat it better.

That is a hard question. If you are 50 or above, or take acid blocking drugs, you are at risk for low B12 just for those 2 reasons. If you are young, then the only big cause is lack of intrinsic factor (autoimmune or genetic), or long standing vegan lifestyle, or use of acid blocking drugs or metformin.

Its your decision in the end.

Okay, so my odds are pretty high, then. I'm 52, and I don't know what acid-blocking drugs are, but I do take Synthroid for hypothyroidism; my hormones, Primpro; and Restoril for when I can't sleep. I take a fish oil pill every day.

And I know you can't make the decision for me, but I do value your opinion. I'm just so anxious to see if I'll get results from them, but I've waited this long, so I guess another month won't kill me. I don't know what to do.

It is being recommended that people in US over 50 take B12 every day anyway.

Acid blocking drugs are Zantac, Pepcid, Tagamet, Prilosec and Prevacid OTC and their cousins which are still on RX.

I'd up the fish oil. Unless you are taking a concentrated one?

Fish oils are really good. They are anti-inflammatory, reduce triglycerides, improve cardiovascular issues and help remyelinate nerves.

Having salmon at least once a week is good too. (one serving of salmon can have 4000 mg of Omega-3s.)

mrsD, what would I up the fish oil to, to two or three a day? That's no problem. I'm not taking the concentrated one. And I should have know what you meant by acid-blocking drugs. I"m just tired and working nonstop with burning feet. Sometimes my brain goes numb, but none of those.

What would you think if I took the B1, B6, and a couple more supplements I can't spell right now, etc., and wait on the B12 until after my visit? Thanks, mrsD.

Thiamine works in a different way than B12. If you want to know exactly where you stand with B12, then a blood test is the only way.

Thiamine or Benfotiamine is a good idea. I use it myself. I find it is best for "burning". If you want B6, I'd suggest the P5P version.
You don't need high doses of this. The NOW brand has 33mg of pyridoxal in it, and that once a day should be enough for most people. Some people are coming here however, with complaints about B6, so keep that in mind.

If you don't add many things all at once, you can see which ones work best for you. So do the Benfotiamine first. 300mg a day to start, and see how you feel in a couple of weeks. Benfotiamine is not common in local stores. iherb.com offers it affordably.

The fish oil really needs to be higher than 1 a day for anti-inflammatory results. 3 a day of regular is better. I have met a patient who took 13 grams a day for an autoimmune kidney problem with physician supervision, and it fixed the damage to his kidneys! If you eat an 8oz portion of salmon you'd get about 4 grams of Omega-3s. We use a concentrated enteric coated fish oil here in this house now. Sam's club and Costco offer it.

I gave you a list of acid blocking drugs above. Long term use of these for "heartburn" or GERD, interfere with folate absorption and B12, along with calcium, magnesium, iron and zinc. These drugs help for heartburn in the short run, but over time, upset your body's ability to absorb acid dependent nutrients.

i second the use of b1 or benfotiamine for burning feelings. was very effective for me and cut mine way down.

That sounds like a plan to me. I'll begin the benfotiamine first, up the fish oil, and I also have alpha lipoic acid.

I'd like to know what you think about taking the ALA. I've read that it can help with neuropathy, and when I was at the health food store, they had a book I looked through that had a write-up about the ALA had been known in many cases to help cure neuropathy. 600 mgs, 1 a day? I dont even know how much to take.

But I'll hold off on the B12 and set it aside, because I really do want some B12 blood work done to see if there's a deficiency. I may not ever know why I have this, but I'd like to try and find out.

So glad to know that the benfotiamine has helped both you and Echos with the burning!

I read online, too, that a massager, or vibrator, helps some people with their burning and pain, that you should try it for five minutes on each calf and five minutes on each foot, but someone other than yourself needs to do it for you. I'm going to try that as well. I've read that kind of stimulation can last a day or two. I, like everyone else, want off of this medication so bad. I totally don't mind taking the supplements and vitamins, but this other stuff, I've had my fill of; although, it has helped me some and I'm grateful.