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Old 07-12-2015, 04:24 PM #1
Eskiemom Eskiemom is offline
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Originally Posted by mrsD View Post
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?
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.
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Old 07-12-2015, 04:44 PM #2
Patrick Winter Patrick Winter is offline
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Quote:
Originally Posted by Eskiemom View Post
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 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.
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Old 07-12-2015, 04:49 PM #3
Eskiemom Eskiemom is offline
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What is your defined diagnosis though?
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.
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Old 07-12-2015, 05:31 PM #4
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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
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Old 07-12-2015, 05:32 PM #5
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Quote:
Originally Posted by Eskiemom View Post
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.
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.
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Old 07-12-2015, 06:21 PM #6
Eskiemom Eskiemom is offline
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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.
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Old 07-15-2015, 07:01 PM #7
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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.
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".
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Old 07-15-2015, 07:04 PM #8
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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.
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Old 07-15-2015, 07:35 PM #9
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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/
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Old 07-15-2015, 07:37 PM #10
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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?????????????????????????????
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