Oh - so it's an alright brand to start taking then? ...What is "GMP"?:winky:

Thank you Ginnie for your reply, I have started to take your advice, I am now taking vitamin B12 + E, However I saw the doctor yesterday, and he has now advised me to up my dosage of Gabapentin to 600 mg ( Twice Daily ) yet more pills when will this nightmare end !!!!

Pollyh :hug:

Hi Jesse,
I am not certain but I believe GMP means good manufacturing practice.:)

Is L-Carnitine L- Tartrate as effective 4 neuropathy as Acetyl L -Carnitine???
 

I just bought a bottle of 500mg L-Carnitine and now noticed in the back it's labelled as " L-Carnitine L- Tartrate". I read some confusing articles on the net. Is it the same "effectively " for Neuropathy as Acetyl-L-carnitine? ...I need to know before taking it.

Basically, I hear its both an analgesic and nerve/growth and protector. Does anyone here tale this? And can anyone please help me out with this?

New Comer
 

Hi - I am new here. I am trying to follow all the information for supplements being suggested and I'm finding it a bit confusing. Are you taking all these as separate vitamins or are there formulas with some of them combined? How many times a day are you taking supplements?

Also, did you discontinue any medications given to you by the doctors or are these supplements in addition to medication from doctors?:confused: Thanks for any help you can provide. Basically, I could use a "cheat sheet" with all the supplements I should consider taking.

One should choose supplements based on their history and tests.

The Big Three... most people can use . methylB12, Vit D, and magnesium. Other supplements can be chosen depending on your type of PN... diabetic, alcohol, toxin, etc. If you have a hereditary form of CMT...then most supplements won't work. But using the Big Three will confer other health benefits and are worth trying.

Yes, there are "formulas"—all kinds of price-inflated mixtures with marketing tailored to peoples' suffering and desperation, and claims falling just short of promising miraculous results—by the copious/profuse use of plethoras of weasel words.

There are 2 basic problems with these combined formulas:

1. They usually wind up costing at least twice what they would if you purchased the exact same constituents separately.

2. They can't be tailored for an individual's specific needs, as you can by obtaining supplements separately and taking what you need—and only what you actually need—in the appropriate amounts. No formula is likely to have everything one needs, and at the same time, not contain stuff you don't need.

I wouldn't discontinue any medication prescribed by a doctor without their knowledge—at the very least—and preferably their consent/sanction. In some cases supplements are taken in addition to prescribed medications; in others, they are taken in lieu. Example: I was prescribed gabapentin for the burning pain of PN. After learning about it here, following up with my own research, and discussing it with my doctor, I found that taking R-Lipoic Acid stopped the burning pain completely. I told my doctor about it, and he had no problem with my taking it instead of the gabapentin.

Would I be wrong in guessing that basically, you're looking for a quick fix? I think many of us came here thinking/hoping the same thing. I did. There isn't one. We've all pretty much had to put in some time reading, learning, and discussing all this stuff here. Fortunately there are some very knowledgable folks here whose generous contributions & participation have saved many of us a lot of time and duplicated effort. That's worth a lot when things get so confusing and overwhelming.

I think it's still wise to take things one step at a time, so you know what's working, and what's waste.

Doc

Neuropathy can improve IF the cause found/stopped, AND the neuropathy is a sort that can be reversed.

NOT ALL NEUROPATHIES can be fixed.

It would be 'Lovely to think so' but it isn't true.

Elaine

..........+100

Which form of Coq-10 are you taking there are 2 forms.

Reminder.... this is a pretty old thread. The water soluble forms of CoQ-10 were not common when this thread was made. (or were very expensive).

The cost has come down now for both CoQ-10 and Ubiquinol water based forms today. These are the types I recommend now, as people can afford to use them, and they require much lower dosing.

Maybe it's not a bad idea to put that reminder in the first post? I now remember I actually found this forum via this thread after a Google search, and seeing that it has 137,000 views I'm probably not the only one. ;)

I really hesitate to alter people's posts, without their permission.
(unless there is a serious need for it.)

But yes, there are many people who come into this thread from Google.

Some of the views are also automated bots...who come in anytime a thread is bumped. These are search engines and not "real living breathing people). ;)

More Info
 

I'm still being tested to find out exactly what's wrong, but my mother also has neuropathy - so SOMETHING going on is genetic. They have never found an exact cause of hers. My brother also has some autoimmune issues. He has been finding the vitamin K2 to be helpful in controlling his issues. Has anyone heard of this used for neuropathy before?

I would make sure anyone using K2 would have testing for
cryoglobulinemia, and the other peptides that thicken the blood, IgG and IgM.

If you have thickened or highly viscous blood you are prone to blocking blood vessels.

Here is a good monograph with explanations about K2...
Please read it carefully.

http://lpi.oregonstate.edu/infocente...mins/vitaminK/

Some posters here also find improvements with Vit E.
Use a good natural form if you decide to try E as well.

Do I need to see a doctor?
 

I have all of these symptoms.. Doctors have given me strength and flexibility tests as well as blood work. They all say I'm fine. I saw a doctor for scoliosis, she said I could experience pain and numbness on one side, she acted confused when I shared that it was both feet and legs as well as both hands and arms. I also have abdominal and back pain as well as ringing in my ears... Reading these post I feel like doctors won't ever help and I should just tackle it with diet and exercise. Which is already pretty good, but I can try harder.

periodically test b6 levels while taking
 

I would still be careful about B6 toxicity. I would advise testing before taking and then testing again a few months after taking to watch levels.

My doctors put me on B6 right away without testing and my levels shot up through the roof, probably worsening my PN. I would have kept taking the B6 if I hadn't listened to my own gut feeling and make them test me (after asking many times) and getting my test results myself to check (they never noticed this, even after they received the lab results back - I had to point it out to them).

It is a good idea to keep an eye on your levels because your body might not be eliminating it as expected.

I have now been off it for four months and my body is still not back to normal levels.

The levels and ranges were designed to reflect people NOT taking supplements. It is only to be expected that taking something everyday would shift those levels to a different reading.

What is missing from our medical community is the information about what is serious for those taking "something" compared to someone not.

All we have to go on today, is the patient's information about how they "feel". If something doesn't agree with you, don't take it. Then there is the testing itself. If the red cells burst in the sample and spill their contents then artificially high readings can result. But they do not reflect the true serum levels.

There are now testing labs that only measure intracellular levels, so that mistakes cannot happen as often.

So are you saying that perhaps I shouldn't be as concerned?

I developed neuropathy straight away only three days after my first chemo infusion. The doctors gave me B6 tablets and told me not to take more than 100mg a day. I can't remember but I think I took a modest amount daily for two months. I kept bugging them to test my B6 and finally a couple of months later I got my test and the value showed around 12000 even though it was supposed to be below 180. Now 8 months after my first infusion it still is around 300 and hasn't fully returned to normal. I read about other people who had b6 toxicity induced neuropathy with levels around 700. So I've been thinking that perhaps taking B6 actually compounded my chemo neuropathy and made it worse. What's worse is I had to figure all this out on my own and the doctors don't seem to care.

Thanks for any thoughts.

.... another thing to add to my post .... it is hard to tell if my neuropathy is from the chemo or from B6 toxity if I base it only on how it feels but it would be nice to know because the b6 toxity has a better chance of healing itself.

Acetyl L Carnitine
 

Thank you so much for this information and congratulations on your amazing progress!

How are you now? Curious what you did to get better?
 

Hi Tom - I am freshly diagnosed, male in my late 30's and have had the precise symptoms you mentioned. The invisible raindrops is immediately what comes to mind when I am walking to /from work. I literally look up at the sky. and allt he other stuff. Love to know how you are doing now and how you found your way to the recovery. I am new to the forum so not sure how to find Mrs D's stickies. Congratulations and I hope you are still well.

Hi franklin76
Welcome to Neurotalk. Glad you found this thread - it's a good one and your bumping it up to the top will help others see it. Re finding MrsD's stickies - stickies are threads that are stuck to the top of a forum page. Go to any of the forum topics and you will see at the top of most lists a number of threads that are designated 'stickies'. MrsD has several throughout neurotalk. The one you're probably looking for is at the top of the Peripheral Neuropathy forum.To get there click on NT Support Groups (top left of page) then go down to Health Conditions and find the Peripheral Neuropathy forum - click - the stickies should be at the top.

I hope you find some answers to your questions. There are plenty of friendly folk here to help out - just ask away. Note that some of the postings can be quite old and you may not always get a response to direct questions to older posters.
All the best.

I found it - you can ignore my old reply. Thanks!

Update
 

I want to encourage people that one of the keys to improving is correcting the cause. Idiopathic neuropathy does not exist; it is simply undiagnosed.

It was 15 years before I found myself accidentally in the hands of a Lyme Literate MD who diagnosed my Lyme. Treatment "reverse aged" me to a person I no longer recognized, as I'd become so identified with my symptoms.

But the entire neuropathy has not reversed, and another smart MD looked for something no one else had: mold toxin. I tested positive for two neuro-toxins. Then I had my home inspected. Both molds are living in my house. One is obvious, once you know to look under your sink on the wall. The other is behind drywall, which makes excellent fodder for mold.

So now I face detoxing from the mold and remediating my home. I expect it to cost way more than I'd want to spend, but I also expect my health will make more gains.

Don't stop looking!

Feed your mitochondria, because they are the powerhouses of detoxing and feeding our long nerves.

Liza Jane

Interesting. So how did you test yourself for mold? Specific blood tests? They found my copper levels to be low 60 vs 70-160 and ceruoplasm the same so that is the latest thinking as they said it was very rare for someone of my age to have this be below normal as body needs very little copper intake to maintain these levels (better question is why am I not absorbing the copper?). Will see if this helps with the reversal. I will keep people posted. I was wondering a bit about mold but the 4 other members living in the apt with me have no symptoms. The bathrooms literally have brown stained mold on the marble underneath the toilets and around the shower walls and in general the apartment and bathrooms don't vent well. I am doubtful but I guess it could be worth a check. Thanks for the tip. Have you heard anything else on copper deficiency on this forum?

Yes, I feel the same somewhat. I can still get into a panic mode on occasion when things are flaring but overall I'm letting go of the fears associated with it. I'm 62 and I'm heading out the door anyway. My affairs are in good order and everything is in place in the event of my demise.

There is a phrase from the movie Croupier, which btw is one of my top 10 favorite movies. Hang on tightly, let go lightly.

I will fight like mad to cure myself or find a way to have a life in spite of what is happening. But if in my heart I truly feel I don't want to do it anymore or suffer it then I give myself permission to intervene in my own behalf. This IMO is honorable and good. Anyone who really loves me will support me in this. I can think of no greater loss than the loss of one's memories of the good times, to unremitting pain. I watched it happen with my mother.

Hi there, Franklin:

This is the B12 stickie:
http://neurotalk.psychcentral.com/thread85103.html

And this is the subforum where most of the informational posts are:
http://neurotalk.psychcentral.com/forum119.html

Don't forget the "search" feature. You can search any term 4 letters long or more on it to find posts on the PN forum.
The search field is on the upper right of the first page of the PN forum.

Old posting, but good info to bring up and especially for the new people. Improvement can and does happen.

Steve, i read you on another site asking is this can be anxiety. So do you have a diagnostic of small fiber?? and how you cure that? thanks

btw how do you diagnostic neuropathy? I have often burning pains and even a bone pains sensation. Sometimens comes, sometimes goes. My EMGs are all negative; MRI all negative, QST one is positive and another negative. My GP wont run a nerve biopsy. Vitamin D is in deficiency.. Please if anybody read that i know you can have more experience than me. Its really a neuropathy? It could really be a psychogenic pain? I have it since long and i dont sure about the last thing:S And if was a neuropathy or a psychogenic how does improve that??

I have SFN diagnosed with a skin biopsy. Just having the diagnosis eased my mind. It helps to know that I'm not crazy. Especially since the first neuro I went to told me I was making up my symptoms. I honestly thought I was losing it.

had enough of so called doctors if you see 4 of them for the same problem you have 3 different answers!!

It's everything really. Sleep, stress, blood sugar (around 80 is good), proper water intake, a lower carb diet with plenty of protein and saturated fats and cruciferous vegetables (if that is the right diet for you), walking in nature and walking barefoot in the morning sun (mitochondria as mentioned before by LizaJane) the right supplements, being happy, sometimes a lifestyle change.

A good deal of disease is probably generated by our habits and most "disease processes" can be affected by the change of habit and attitude and even if they cannot be "cured" they can be greatly improved or managed.

How can I heal and get off nucyntaHope
 

how can I heal and get off nucynta

Diagnosed with PN probably from alcohol or possibly Lyme
 

I have had a slow progression of numbness and then tingling in my feet for a few months. My general doc who I just saw for a checkup said it was PN with alcohol or idiosyncratic casuses. My B-12 was around 400. I haven't gotten into see a neurologist yet but have stopped drinking and started on the suggested B12 & other Bs program. I'm starting to already feel less numbness and the tingling has moved down my leg to mostly my feet. I spend a lot of time outdoors and have had many tick bites so I'll have my neurologist check for lymes too. I've had one or two glasses of wine in the last few weeks but not the usual 2 to 3 most days. I hope the improvement continues! Thanks to everyone who has contributed to this site!:)

A friend had decades of neuropathy and finally off gabapentin and finding good help with grape seed extract. She still have some issues but much improved. Her issues are from statins and too many abx class of Fluoroquinolones

I never had the dx but deal with some with OA in my feet and Vicks Vapor Rub helps and I add drops of Lemon Oil to the drops.

Many can be deficient in B12 and magnesium for just a couple.

I would like to bring up this thread as I think it can be extremely helpful for those searching for some hope like me. the last post is now more than two years ago and I would like to motivate people whose symptoms have improved over the course of time to post their "success story" here. I would love to hear from you and I am very interested all the details of your road to improvement.

On top of that, I have a general question regarding healing or improvement. I often read and hear that there is no such thing in neuropathy and that it cannot be reversed. Why is that? I have read somewhere that peripheral nerves can regrow so if the underlying cause of the nerve damage is eliminated why do some people think it its not possible to get better? I understand that this does not happen often and especially in idiopathic and diabetic neuropathy it is difficult/impossible to eliminate the cause, but is it generally impossible for the nerve to regrow? And even if the nerves do not fully regrow, symptoms might be lessen over time.

Can you say more - what do you take that is "feeding the mitochondria"? I don't usua
 

can you say more - what do you take to feed the mitochondria?

new to the forum: where to find stickied programs?
 

Hello- I realize this post is more than 10 years old, but is nevertheless very encouraging :)

How do I access the program on page 2 of the 'stickies'? And where to I find the stickies in general- is a sticky for the overall website or for a particular subforum (e.g. peripheral neuropathy)?

Many thanks in advance!