Karen, I have a feeling your PN causes are very different from mine, as you describe it, it does not sound like mine at all.

I have been taking fish oil, and 2 Tablespoons heaping, of flaxseed a long while and neither bother me at all.

I do suspect hormones kinda, in that mine all started with thyroid issues, and I have recently found out I have auto immune issues, hashimoto.

I have no evidence of menopause yet, even though I am 47, I have very regular periods, never missed one, rarely late or early. I have major PMS and I believe major estrogen dominance for sure.

Hopefully all these things will help, nothing else is yet. I missed Easter with my family today, we drove to the restaurant and the AC broke and the room reserved for the party was HOT. One step in and I knew I would not be able to stay, heat sets off a flare big time. I had to leave everyone 10 minutes after arriving and go home and be alone. I am ready for a break through.

Thank you for your kind thoughts and wishes, and help!

Happy Easter

We probably shouldn't be talking about all of this personal stuff all over the boards but here we are! What I suspect is that my PN may have come on for more than one reason - it may have been a combo, because it was a combo of items that seemed to help me so much in the end - Vitamin D and B1 shortage, Lyme, run flat out of the hormone progesterone (perimenopause when my PN started and then menopause also as of last summer).

As good as my PN has been, I do not kid myself that it is gone. I still take my Vitamin D, B1 you told me about that I can never spell (Bentfiomine?), my progesterone, etc. Do you think I will quit that? No, because I am not cured, I am treated.

I suspect you are right, your issues may also be from a combo and require different items to bring it down to where you are happier most days. In Doc Lee's book, he says estrogen dominance usually occurs seven years before your hormones actual register to the point where you are 'technically in menopause.'

I also think that you should try only one new thing at a time, to see if that helps you or not.

I read online - true or not, don't know - that if Vitamin D were to have been discovered more recently, it would be classified as a hormone, not a Vitamin with a letter on it. When I read that, it was like a light bulb went off over my head as to why it helped me so much when I got that Vitamin D level straightened out.

I have big hopes for you and thanks again for what you did for me , Sincerely, Karen

How much benfotiamine do you still take? I still take it but I only take 500 since it stopped having that amazing relief. You said earlier you took quite a bit more than that at one time, I guess I never upped mine above 500.

This is personal medical stuff but if it helps even one stranger who stumbles upon it well than glad we posted. You never know.

How did you discover you had lyme disease?

Yes, I plan to use only the DE first for awhile before the progesterone, mostly cuz I will receive it first.

When I first starting using the DE, like I reported, nerve pain went to zero. Then I realized, after time, that it was conflicting with the estrogen I take. I had to choose, I chose DE and weened myself off estrogen. So at first on the DE before any conflict appeared, I pretty much forgot about the Benfotiamine and the alpha lipoic acid for a while, like I said, when I started this post. Then I had to take it again, maybe 250 - 500 ben. a day, for a while - before I figured out the estrogen conflict, plus it was a new prescription and delivery type of estrogen than I had been on before. Now I have weened myself off estrogen and am only on progesterone and have almost forgot about the ben. and the alpha. l. a. again. But I just ordered two more bottles of the ben. because I plan never to be outta that stuff. You never know when things may change.

Before I had progesterone help, and just had the Vitamin D help - I was taking four of those Ben. 250 mg. per day. That took away so much misery... the all over pricking and itching... sometimes lasting all day, the nerve pain that still started up at night in the legs.

Then even with that, I wound up with nerve pain in the side and back that didn't go away with the ben. or the vit. d help. That's when - enter progesterone, and that pretty much cleared up in four days. Joyous again was I. But I still religiously took my ben. and alpha l a , one each in the morning, just as a precautionary.. and if I had any breakthrough on occassion, I would take more. Like if I drank soy milk, wham, here comes the nerve pain, then back to the closet for the ben. which would mostly relieve it.

You see I'm talking about many various points of time in this post, that's why it sounds so confusing.

Way back when the PN first hit, so did a pain in my knee, a big pain that was sudden. Not there one day, there the next - full blast. I figured, crap, I tore something. The first ortho guy told me it was not an injury it was arthritis and if he could fix that for me, he'd win some big huge prize that only the smartest doctor's in the world recieve. Then two weeks later, the knee ballooned up double. Went to ortho again, he told me - oh - physical therapy and shoe inserts. Still ballooned up two weeks later, went back and ortho said, oh - you just over did it. I thought "F" this and called my cousin and she gave me referral to different ortho, Dr. McDevitt of Glen Burnie.

Dr. McD took one look at knee and said that's lyme disease. He said he's had a record number of cases of it this year. Sent me upstairs to lab to have a blood test. Blood test came back and it showed like a small elevation indicating something meaning positive for lyme disease. I couldn't believe it - other people get lyme disease, not me. I've had no deer tick and sure as "H" had no 'bullseye- ever.

I asked, well since it's such a small indication, could that mean I had a mild case of lyme disease? Dr. McD said, 'that's like being a little bit pregnant.' I thought Oh crap- but then I got real happy cause now all I needed was a bottle of antibiotic and problem solved, right?

Then I found out that neuropathy can be caused by lyme disease. So then I got even happier thinking, Oh Goody - now that's its just lyme disease, when it goes away with the antibiotic, then goodbye peripheral neuropathy - Whoo Hoo!!! Both problems solved!!!!

(This was not the case, still dealing with lyme, on antibiotic again right now and still have PN)

Also on lyme blood test, doc McD asked for vitamin d level and it was 16 point something and he told me it was the lowest he'd ever seen in his entire career. I asked why; he said maybe that was just hereditary. Then he took xray of the leg and said, Oh by the way, you have an extra joint in your hip - some kind of genetical defect. Then I felt super creepy for a while after that and would rather not have know bout that.

Then I finally got the nerve to come here and ask around. I was afraid because I was scared crap less already about PN and didn't want to read more horror stories and be even MORE scared and upset. But pain forced me to come here and then I got the help that I have already mentioned boo-coo times, that gave me my life back.

But then again, I was the one who tried what people told me to try, also.

The neurologist never asked for any tests until I went to a second neurologist for a second opinion. The second neurologist asked for tests and then the first one, he decided he wanted to see those tests too. Both told me, 50% of the people with PN are diabetics, and if you are not a diabetic, then we usually never figure out why you have PN. So I figured, ok, it's up to me to use Dr. Google and find out myself.

And here I wound up, among many other places.

I would like to comment on benfotiamine:

I really don't think 500mg of benfotiamine is necessary once you establish daily use. After about a month on 300mg to start, 150mg should be enough for most people.

Hi Mrs. D - thanks for you input. In the past, I found that I would rather take a ben. than a pain killer prescription drug. It made me feel more well to solve my occassional leg pain in that manner - with a supplement, rather than a prescription drug. I just took what kept my pain at bay - but I never exceeded the four 250 mg,. capsules a day per the directions. Thanks for your note, Karen

That is your choice, Karen. But I wanted to go on the record that I don't believe that high a dose is necessary.

MrsD that is what I thought, which is why I cut back. I may have taken more than 500 at some point back when I thought it would help, but then dropped back to 500. I guess I thought 500 was enough, I take one pill with breakfast, 250, and one with dinner, 250. Not sure it is doing anything anymore.

MrsD do you feel it is not safe to take 500 a day? Guess I can cut back, since I am not sure it is doing anything. I keep taking also for blood sugar reasons with my meals.

Karen I am going to ask for the lyme test in a couple weeks when I go back to neuro. I have never checked my vitD but I take 5,000 a day. I am never in the sun, ever now.

Karen, how do you use the DE without inhaling it? Seems that it is a concern not to breath it into lungs, even suggest a mask???? Seems scary. Do you wear a mask when putting it in water?