What does it mean if the supplement regimes don't work?
 

Though I have no official dx, I have implemented the supplement regimes for over one year. I have not had any improvement like some have.
I've tried everything with no affect.

Am I just one of the unlucky ones?
Or maybe it's not neuropathy?

Have you tried stopping your supplements? That seems to be a good method to tell if they are doing anything or not. Sometimes it takes stopping them to realize that perhaps they were doing some good.

It all depends on what you are using.

If you use supplements for diabetes... and don't have that, well, don't expect much.

If you are not low in B12, don't expect a supplement to do much.

Many of the supplements are specific to certain actions.

Which ones are you using? and the doses?

Some can be so subtle but still "doing"something positive.

Some can be profound as I have had with grape seed ex and allergy/sinus issues. And edema also. And if it is preventing cancer, it's working.

Some may not do anything, but I like to give a supp a 3 month trial at least. Some may take longer to work in one's system.

I've gone off 2 supps in the last couple yrs and "knew it"...so went back on.

Methyl B12 - 5,000 with folate at 1,000 (1 per day)
Cod Liver Oil - 1,000 2+x day
Co-Q10 - 200mg (1 per day)
ALA & ALC HCI - 600 and 1000 respectively (1 per day)

I've also taken Multi-B Neuropathy support with Benfotiamine 150mg, B2 10mg, B6 10mg, Folic Acid 100mcg, B12 500mcg, B5 50mg but have been taking it more like every second day. Also Vit E, Magnesium L-Threonate50mg plus magnesium lotion at night.

I'm taking all supplements recommended on this site and after months and minths I've haven't noticed a thing! No improvements ....

I think when you don't have a confirmed diagnosis you're gonna have a hard time targeting a specific problem.

Have you kept a journal over time of how the pain is? Video journals are good too.

What I've heard most is Irritated and sensitive nerves. One neuro said "I think" you have pn. I do have Raynauds sporadically and its cousin erthymelagia.

But my feeling is at this point, I have to figure this out myself having visited 20 docs.

Jay Cohen is a doctor who has EM. Three supplements that he uses successfully are Mg, ALA and PC.

http://medicationsense.com/articles/2012/emsup.php

http://www.jaycohenmd.com/erythromelalgia.html

First off, drop that Cod liver oil to one a day. And start taking a good fishoil or krill oil to increase the anti-inflammatory effects of EPA and DHA. (3 reg fish oil or one extra strength krill) Cod liver oil has lots of Vit A in it and should be used cautiously. I don't think you need a B-50 while taking the Neuropathy support. That is too much B6.

600mg of ALA (the old racemic mixed form is not much). You could try the new improved stabilized R-lipoic acid called NaRALA ... just one of those a day is enough. The old form requires about 1800mg a day over time to work. Doctor's Best makes a good affordable Stabilized R-lipoic acid 100mg:
http://www.iherb.com/Doctor-s-Best-B...FUY8gQodXDkL_Q

What brand of CoQ-10 do you use? Is it Qunol or another new solubilized form? 200mg of the older types is not much and is not well absorbed. With Qunol only one a day is needed.

Do you take statin drugs for cholesterol? If so, you will continue with your nerve problems most likely.

I've tried every supplement too. I've even gone off of them and didn't notice any difference but I take them anyway just in case. Or perhaps it's just so I can feel like I am doing something to help this horrid condition.

I was reading about neuropathy on a site where doctors weigh in and it was very discouraging. One says some laser treatment shows positive results, another says there are no studies to support it. One says narcotics are the most effective, another says they would never prescribe them. They contradict one another because there is no acceptable treatment protocol.

Symptom management and vitamin supplements are not enough. Diet and exercise are not enough. All of it combined is not enough.

No statin drugs - ever.
Coq10 is from Andrew Lessman
I took the R-lipoic in the past. Several bottles of the same brand you recommend. I've ordered it again.

Politics, Religion & Supplements
 

To each his own-- somebody famous said that. When I first started out, I wanted to get better and I mean yesterday!!! After a couple of years I have learned a lot from Mrs.D and I-we all owe her so much. If you have baseline numbers such as B-12, you know if you need to supplement or not. If you don't know if you need it or not, its akin to buying insurance. And everyone knows how rich Warren Buffet is. I will always have to supplement B-12 as I was deficient due to years of Metformin and I will continue both. My Endo put me on the CoQ-10, nuff said. He said also that I needed the Gelcap of Vitamin D. I have discontinued 5 or 6 others for a time and do not feel any different. But what if I am messing up???? You see my point? I will always read everything from Mrs.D but I might not take everything I used to in the beginning. I also had a Neuro tell me to stop taking Zinc as a supplement(I had read something on You-Tube)there is a zinc-copper ratio that has to be tested for. My B-12 went from 119 to over 900 and only then did I stop monthly injections and maintain with Foltanx. That was the only difinitive numbers that I knew of. All the rest were"insurance". As a child you didn't know if you are a conservative or a liberal-a Baptist or a Methodist. If you are just getting started with supplements you just don't know which ones are going to be, " your own".

Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.

One of many sites concerning Raynauds.

http://www.niams.nih.gov/health_info...aynauds_ff.asp

Another site for erythromelalgia.

https://rarediseases.org/rare-diseases/erythromelalgia/

I am also in doudt if my supplements work
I used to use acethyl L-carnitine and alpha lipioc acid 1600 mg &borage oil1300mg including Q10
Afterthat i used PEA and vitamine D 2000 iue for a period of maybe 1,5 mouths

Nowadays i use Curcubrain,R-lipioc acid Qunol Q10 and somethimes inositol.

I know its all trail and error but and especially if you have a toxic PN R-lipioc acid should be used including qunol q10.
But i wander if this is doing anything for me.
I didnt notice any real difference with al these supplements.

I could be wrong but pea and vit d could have made a minor minor difference but overall i reeally havet felt any BIG change when using all this stuf.
So what is the right stuff to use?????????????????????????????

Thanks.
I've asked five neuro's and my primary and they all say I don't have it.
My clinical exam is perfect. Strength, reflexes, feeling, etc.

Yet this afternoon, my right toe turned into a sparkler! And the symptoms travel up the entire inside of my right leg from great toe to top of inside thigh.
Rumbling twitching all over my legs.

I had testing by Athena Labs two years ago....those neuro's said they tested me for everything and all came back normal. I'll have to check if they tested for CMT.

Check your Private Messages.

Pain only in the big toe may be coming from compression higher up at the knee or spine. I dislocated my knee years ago and the pain went straight to my toe. The Chiro had me draw it on a human outline, in my information papers when I went there.

When she adjusted my knee... the toe pain was instantly gone.

But now when I get pain in my toe, I put a Lidoderm patch behind that knee and the pain goes away in the same fashion.
The magnesium lotion also works that way for me.
https://www.pinterest.com/pin/487162884665368556/

PN type pain can come from mechanical issues, compressions, or spinal compressions.

No CMT. I was tested for all variants and was negative.
It's progressing about two inches per week.

That's pretty much what I thought. No CMT. Thank you.

mrs. D, Which brand fish oil or krill oil do you recommend?

I have ordered B12, Fish Oil, Stabilized R-Lipoic (Doctor's Best) and Vit D.

I have auto-immune SFN.

Do I start with Acetyl L Cystein and Acetyl L Carnatine both? Dosage? Brand? Are there newer versions of these supplements in market so that I can take less and body can absorb more? If so, what are names and brands?

Thanks,

We use Krill oil here. We are just starting to use the new product at Costco...their brand, of extra strength Krill oil. Their brands of supplements have been high quality in the past and I think this one is too. But for years we have been using MegaRed which Costco has affordably and often a coupon in the monthly mail.

There are many good fish oils... here is a evaluation as to content and quality/price:
https://labdoor.com/rankings/fish-oil

Most fish oils (excluding krill) are processed by central large factories, so they tend to be of better quality now than in the past. Nordic is popular and Carlson's... they are well established brands. NatureMade is a good company too, and more easily found in stores. The oil is best absorbed with food...so take with a meal.

No I don't know about improved versions of NAC or AlCar.
NOW brand is good and affordable. So is Doctor's Best.
Acetyl carnitine is not well absorbed so divide up doses if you take in gram quanitities, throughout the day.

Thank You!