I like your website. It is laid out in an easy to read and understand manner... There is so much useful information there.

Cathie

Do you remember me posting on the old BT that the EMG/Nerve Conduction studies set me on fire all over? If you can do without those, I strongly recommend it, since you are already having burning issues...

I think there was at least one other person who posted back then that they had had a similar reaction... I know in PN that the nerves can either by hypo or hyper active. I guess in this case, our sensory nerves must be hyperreactive to stimulation...

I am going to try MrsD's thiamine suggestion.

If you haven't already, try the ColPak icepacks wrapped in a hand towel...

Cathie

Mel,

No need to worry about overdosing on the B-12. You could ingest handfuls of the stuff and would be fine. Most sources list no known levels of toxicity. It is water soluble - your body will use what it needs and the rest will be excreted as waste in urine.

Not sure if you were asking again about the thiamine and ALA - I gave one opinion, there may be others, but I am suggesting that it would be useful to hold off on other supplements for a bit to see what effect, if any, of the B-12.

rafi

Does anybody know if there is a law,i would be happy to send Brian
The Methy B-12 at US price. I don't want my daughter to have to bail
me out of jail.Shes a lawyer but anyday going to have baby.

.................................................. .................................................. .....
Thanks Sue for your very kind offer - I have sent you a Pm:

Brian


Melody - I know your a smart girl and you will see a neuro about this, as well, won't you ??


Brian

I'll check that out....if it is less than the $7.00 I pay for Biofreeze, I'll give one a try. Is it a gel? Is it blue? Alot depends on the base..whether the Ilex will go
thru the skin for therapeutic effects.

I don't put it on the bottoms of my feet, only the tops. It works really fast
to reduce burning when I have a spell.

The menthol in it stimulates cold receptors, which then mask the burning heat
receptors. Menthol is used for itching also.

The Freeze It is a clear gel (in the roll on version). And last night, the most amazing thing happened. Because I had put it on Alan, and it did nothing, I assumed it wouldn't do anything for me either.

So when my feet started burning (on top), I rolled on some of the Freez-it and lo and behold, the burning stopped. I went to bed and had no problems and when I woke up, I was fine (and I continue to be fine, thank the good lord for that).

In CVS, the Freeze it regularly says $11.98 but it was on sale for $7.99 for 88 ml or 3 fluid oz.


-----------------------------------------------------------

I was just surfing the net for more information on Methyl B-12
and I came across this link.

http://www.remedydirect.com/NEU/ProductInformation.htm

This is a product that combines Methyl with B-1 and since there was no information on how many capsules or pills, I decided to call the phone number on the site. The lady said "well, you start out with 4 capsules a day, two in the morning and two at night". I said 'well, how much is in each capsule?" and she said 'oh, there is 1000 mcg of methyl b-12 in each capsule". So I said "oh, so you are taking 4000 mcg of the methy b-12 a day.?" And she said "oh, that's just to start, you will obviously take more as you go on. You should see results the next day (imagine that!!!!!!!).
Guess how much 100 capsules of this stuff is? $39.95.

I ordered methyl b-12 from iherb (1000 mcs) for $7 and change.

My goodness.

Melody

Well, you just discovered how easy it is to assume that because something did (did not) work for someone else, that it will work (not work) for you. I pretty much assumed that -- if both of us had the same disease.

Actually, it turns out that much more of medicine is that way than commonly assumed. In any event, you have now had your own demonstration of why each person with PN has to try those things that make sense, regardless of someone else's response to any given therapeutic treatment.

Sometimes I am almost reluctant to post some of my own responses to things I have tried . . . especially if the result has been negative. While we can certainly learn things from other's reactions to various things -- the most important thing, whether we will get benefit, is impossible to learn.

Anyway, I am glad you found something else that helps with the burning. And it might be a good idea to have something else ready to try in case the Freez-it stops being effective.

rafi

Well, I just had a conversation with Alan (he's sitting in the kitchen with his FOOT PROPPED UP ON ANOTHER CHAIR because of what he did to himself (see my thread on that one). I said to him "I am determined to reverse my neuropathy". He laughed his head off and said "oh yeah, knowing you, you'll try anything, but if you reverse THIS, I'll buy you a diamond ring'.

Since I never had a diamond ring in my life, at least I have a goal!!!

Since I found out I have neuropathy (and god knows how long it has been doing it's thing in my body), I have been determined to beat this thing or DIE TRYING!!!

So I'll take my doses of Methyl B-12, do my power walks and if God is willing, and all the forces in the universe are on my side, (Well, if it works for the Yogis in India, who can control their heartbeats and stand on one leg for days on end), then why can't my body heal itself??? Alan thinks I'm completely out of my mind but well, I've lost a lot in my life.

I just can't let the stress get to me. I have to try and heal my body.

I am going for blood tests Wednesday morning and I'm having a B-12 level done and thryoid panels and everything else that Dr. Fred orders when you first get blood tests done. Then I'll see him next week.

Oh, I have a question. How come, when Alan and I were in the podiatrist's office yesterday (as the doc was working on Alan), I asked the doc, "what do you feel about Methyl B-12 for nerve repair? and he responded "You mean cyanocobalimi, right?" and I said "no, not cyano, but the Methylcobalimin?" and he goes "I don't know anything about the Methyl but I do like my patients to be on a good B-Complex.

SO HOW COME THIS GUY DOESN'T KNOW ABOUT METHYL B-12??????

Melody

When did Doc Fred receive his degree? Soo much has 'evolved' since some docs got their degrees, that doesn't mean that you should drop him...he sounds too good to be true in other ways. But, Endo's and diabetes counselors are far more up to date on such issues, really.

For both you [w/no diabetes] and Alan [w/diabetes] possibly a diabetes NP or nutrition counselor would/could be a way to go? If I were you, I'd also get Alan one of those foot mirrors so he can really check and SEE the bottoms of his feet...good, bad and ugly! Even if your neuropathy isn't due to diabetes, you really should follow all the steps and treat your feet as if it was. I mean, you can BONK your foot/feet and not know you'e done major damage. It all is one heck of a scary prospect, better to be cautious than in the hospital!

Hugs! - j

Why? Because few doctors have much knowledge in nutrition and also in the use of vitamins/supplements in healing... You probably get more education on this board listening to some of the people here who are extremely knowledgeable in these areas...

I may get blasted for this, however, prescribing vitamins and such do not make drug companies any money... Doctors only prescribe what they learn (from the cute little drug reps in the mini skirts) There are no cute little reps going around from the vitamin and supplement companies, because most of the results in the use of vitamins/supplements are not supported by studies done under strict scientific regimens...

I do think that some of the younger doctors are beginning to pick up on some of this though. I had to go to Urgent Care a couple of months or so ago. When the doc went over my list of meds (croak), he said, "You are taking this B12 for pain, aren't you?" Faint!!! There have been a couple of others who have recognized a connection between the use of B12 and pain.

I have questioned why the use of oral B12 doesn't seem to help my pain as much as it used to. The one thing I always forget to include in my health history is the presence of parietal cell antibodies in my bloodwork. These are cells in the stomach which provide "intrinsic factor" which promotes the absorption of B12. Maybe I just am not getting enough of the intrinsic factor to get oral B12 absorbed, I don't know.

One research doc thought perhaps, with the autoimmune issues, it might not be processed properly. I take injectible once a week and it helps a lot. I have read too much of Rose's B12 work though and STILL take oral regardless. As someone posted, too much is not going to hurt you. The excess is eliminated in urine...

Cathie