What do you know about lyme and B1?

[Ginny43]

Last last night I did a search on B1 and neuropathy. The burning and other skin pains are so bad that I'm almost desperate to find help - anything. Surprisingly B1 is said to help ease it and maybe recover. Anyone else have information along these lines?

Today, while still looking, I found this site:

http://www.lymeinfo.net/thiamin.html.
What do you think? What have you experienced?

Looking for answers,
Ginny43

[Ginny43]

So now you know. Invariably, I leap before I look. That website is credited to Cheryl and Rose - of course from BT. That makes it a very credible post.

Thanks to all the work they do and info they give. The rest of us benefit greatly.

I still need to know a lot more about B1. What to do. What to expect, etc.

Greatly humbled and with many blessings,
-- Ginny

[blimeyitslymie]

I have found B12, folic acid and P5P (i think it's b6) to be extremely helpful in reducing (and in the summer eliminating) the idiopathic peripheral neuropathy I have in my large toes and fingers. Under the advise of a former doc I take Perque B-12 2,000 mcg lozenges and Folirinse folic acid drops. You take 1 drop of the folic for every tab of the b-12. You can take up to 10-15 a day if you need to. The only side effect i've experienced is loose stools if I've taken too much. Make sure to take at least 1000-2000 mg vitamin C with it.


Good luck.

[ainee]

G'day Ginny43,
VB1 - that's interesting. If you go back a couple of pages in Lyme Disease - there's a thread - Treating Lyme Naturally - started by littlemiss. I wrote of my experience on several postings.
I believe injury and/or toxins (subjected to even years before any symptoms arise - regardless of cause - even virus' can leave a toxin) can affect the nervous system. I believe the cause of my symptoms are probably still present, but my treatment has reversed most of the symptoms.
Have a nice day.
ainee.

[Ginny43]

Ainee and Blimey -
Thanks for your replies. I know it's trial and error. I didn't realize the MOT eased burning. I'll go back and read it again.

I've been taking B6 and B12, but somehow slid away from folic. I figured B12 affected nerves, but hadn't thought about foic also being able to help that way. I just read that more than 100mg/day of B6 can lead to increased burning, so have stopped that (I've done 150 for about six months). Maybe in a week or so I'll go back to it and use really reduced levels. I'm using 3000 b12, but it's the "c" kind. I can't get the good sublingual and have a phobia about using on-line payments.

Several years ago a company charged me twice and I never could find anybody to get it straightened out. That "cured me" of on-line ordering. Now if only the supplements will cure health problems. Miracles happen every day. Right?

Thanks again -- And still looking for answers B1 and otherwise --
Ginny

[Buttons2]

Hi Ginny,the above is what I take. I use the B12 MethylCobalamin & keep it right by my computer since it needs to be taken 1/2 hr away from the other vits or any food. The folic acid helps to get the B12 into our systems. It also helps me with hair loss! Every time I neglect to take it my hair falls out much worse.

I see my B1 is in the pantry,means I used to take it! I'll add it back this week. Niacin is the one I have trouble with,the time released stuff gave me a tummy ache,the non-flush kind made me tingle.....same with magnesium,haven't found the right one yet.

I get my B12 from vitamin world, I go to the store but I'd not hesitate to order online from them. I researched all vit companies before I chose one I felt was trustworthy.

Buttons,good luck & HUGS to you!

[blimeyitslymie]

I have ordered the Perque B12 and the Folirinse online for at least 2 years and have never had a problem. Please let me know if you want the links; I'd just list themhere,but don't have them handy. Happy to find them for you though,].

Buttons is right. If your body is vitamin deficient, which it most probably is, you need to be especially sure that you take the b12 with folic acid, and that you take vitamin c as well. they all work together. I haven't found much success with b6 (p5p) so haven't used it. I just get b1 in my multiple vitamin and don't take any additional supplementation for that.

[Ginny43]

Thanks for telling me.

I didn't know B12 needed to be by itself. I'll do that. I've slacked off on folic too - probably ran out and just didn't replace. I'll add that back in because my hair just keeps coming out and coming out. When I was taking folic, for the first time in four years, fuzz grew back on my arms. I think it's still there, but with reduced vision, it's little hard to tell how much.

About niacin - I had a royal flush the first time I tried it. Then after I took the pill, I thought I should do a recheck on what it was. In the middle of turning red, I was reading a web page which said to take an aspirin one half hour to an hour before the vitamin. Thinking about it now makes me laugh. Life with lyme is unpredictable. The aspirin worked.

Since there hasn't been much on B1 here, I guess no one else knows.

Hope you all were well enough to do a little labor on Labor Day.
Blessings - Ginny

[Buttons2]

I'd say the amount of hair I remove from the shower drain is 1/2 as much when I'm faithfully taking my folic acid. I have no idea why I slack off on my vits.....maybe I like to suffer? Want to go bald?

I spent Labor Day velcroed to my recliner,did too much "labor" the previous 2 days. That's the way it goes folks!

Vit B1 is thiamine,we get this by eating the following: brewer's yeast,whole grains,blackstrap molasses,brown rice,organ meats,meats,fish,poultry,egg yolks,legumes,nuts.(this info is from my Nutrition Almanac).

This is completely OT, but years ago I sprinkled brewer's yeast on my pets food to prevent fleas,now I have to wonder if it would also repel ticks? Any thoughts on that? I hate using the expensive chemicals on my dog & cat! If you purchase this stuff it must be in a refrigerated case & check the date!

[tmptmp]

Ginny,

Prior to being tested and properly diagnosed and then
treated for Lyme, I was tested for everything else and made
the rounds of every kind of everything else -- doctors,
homeopathic doctors, accupuncture, therapists, health
food, vitamins -- the list went on

IV antibiotics cured the Lyme and was the only thing that
made any kind of difference.

[Ginny43]

I agree with you about the IV antibiotics. When I was fortunate enough to be prescribed that, I'd had lyme for too long for four weeks to be worth much. Neither did I know that the bacteria hide in cysts until the antibiotic is no longer in your body. Then they open up and go back to being active again.

Our insurance limits us to the Johns Hopkins system - excellent in a lot of areas, but adamant about no more antibiotics. Even though I tested positive in the central nervous system, after the antibiotics I'm supposed to be well. Too bad that I don't feel well and still have a myriad of systems.

The only approach now is to try to rebuild a fractured immune system and look for relief in herbs and vitamins. Wish I lived in a more sensible world where people with lyme can take as much antibiotics as people with acne (my daughter got two years of doxycillin for that.)

The answers are somewhere -- just have to find them. I think some are in the things people used to do, like Buttons using yeast on her dogs. The Indians knew things we don't. Pioneers did too.

Thanks for your reply and everyone elses. Send me clues or ideas when you hear of them.

Blessings to all,
Ginny

[tmptmp]

Ginny.

I had late stage chronic neurological Lyme -
diagnosed late - very serious. It took 3
seperate rounds of IV antibiotics (cefotosim (sp?))
to knock it out. The first infusion was 3 (maybe 4)
weeks, the second and third were 6 weeks each.
The 2 relapses were about 6 months apart.

When I was diagnosed in 1988, Stony Brook University
was doing the premier research work on Lyme. It
was finding that neurological Lyme tended to
relapse.

When I informed my internist that "It's back"
he spoke, again, to the department head at
Stony Brook and retreated me immediately.

I was diagnosed before there were pre-mixed
antibiotics. I was prescribed the antibotic
in powder form, sterile water, syringes and
heperin. It was not expensive. The antibiotic
with everything that went with ran about two
or three hundred dollars.

A shunt was put into my wrist and I infused
myself at home, I spent one night in the hospital
(for the first infusion to make sure I was
not allergic). After that, home. I went
to my doctor's office every week or so where
he changed the shunt.

Far less expensive to cover than what goes
on these days and quite doable if your doctor
will work with you in this manner.

I had central nervous system Lyme, when it relapsed,
I needed to be re-treated. The IV retreatments were
6 weeks each, not 4.

Would it help to show this to your doctor.
If you thing so, please do.

[tmptmp]

addendum

Ginny,

I was diagnosed in '88, I was exposed no later
than the 60's. It took a long time to work its
way into my central nervous system and brain.