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Old 04-05-2011, 07:10 AM #1
Beatrice P Beatrice P is offline
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Beatrice P Beatrice P is offline
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Smile Idiopathic neuropathy since 2010

Dear friends,
I was diagnosed in Jan 2010 with idiopathic neuropathy. For about one year it has been very slow progressing, I used to have only fine tingling in feet soles. The nerve conduction studies show also carpal tunnel at right hand. (I also have an inflamation at left shoulder but this is mostly reumathic, since it is very cold sensitive). I have only been prescribed Thiogamma and Milgamma, which helped to some extend.

Since beginning of March 2011, the tingling turned into sharp pains (like needles) in soles and sometimes in palms. I have noticed the skin is more and more sensitive and they slighlty burn, mostly at night. The sensation is bearable right now and I have not asked my neurologist for pain pills yet. I can still sleep 6-7 hours a night.
I was so thrilled to come across this group, as I have found a good PN practitioner!
I have been reading all your messages and empathising with all of your suffering. I also feel a bit more hopeful than before, especially reading LisaJane post.
I use now this daily regimen:
Metylcobalamin 1000 mcg, Benfogamma 100 mg, Salix (vegetal aspirin) 200 mg, Acetyl-L Carnitine 375 mg, Q10 - Coenzyme 100 mg, Alpha-lipoic acid 600 mg, Omega 3 - 625 mg; I also take some homeopathic remedies (which I suspect do nothing, since they are based on placebo effect but I have been taken them for only 2 weeks. If anyone is interested, I could list the remedies.
Today I have bought a product called Neuro Optimizer by Jarrow and I intend to take 1 capsule a day (it is really expensive).

I would be so grateful to everybody but especially to Mrs D if you'd review my daily regimen and maybe suggest dosage, if you think anything is wrong.

Lots of health to everybody!
Cheers,
Beatrice

ps. please excuse my non-native speaker written language
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Old 04-05-2011, 10:25 AM #2
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Beatrice,

I've been using R-Lipoic instead of Alpha-Lipoic.
http://neurotalk.psychcentral.com/sh...light=r-lipoic
The dose only needs to be 100 mg/day, and not very expensive. It's worked really well (no more burning/passive pain) for me since I started it, but it's only been a couple months. The amount you're taking is equivalent, so the only advantage is fewer/smaller pills. Otherwise things look good, and it's obvious you've done more homework than most of us (when newbies) but I'll defer to sager wisdom.

Doc
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Beatrice P (04-05-2011)
Old 04-05-2011, 10:43 AM #3
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Lightbulb

That NeuroOptimizer is designed to deliver FOUR capsules for the chart it lists:

http://www.jarrow.com/product.php?prodid=188

At once capsule a day, you won't get much. It duplicates the lipoic acid (low amount anyway) and carnitine you are already taking.

You are paying quite a bit of money for the choline alone. 2 eggs with yolks a day would do better for you and some peanuts!
http://www.pspinformation.com/nutrit.../choline.shtml

Take that B12 on an empty stomach and get tested for Vit D...and then you'll be good to go.
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Beatrice P (04-05-2011)
Old 04-05-2011, 01:10 PM #4
Beatrice P Beatrice P is offline
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Quote:
Originally Posted by Dr. Smith View Post
Beatrice,

I've been using R-Lipoic instead of Alpha-Lipoic.
The dose only needs to be 100 mg/day, and not very expensive. It's worked really well (no more burning/passive pain) for me since I started it, but it's only been a couple months. The amount you're taking is equivalent, so the only advantage is fewer/smaller pills. Otherwise things look good, and it's obvious you've done more homework than most of us (when newbies) but I'll defer to sager wisdom.

Doc
Many thanks, Dr. Smith, I truly appreciate your advice.
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Old 04-05-2011, 01:19 PM #5
Beatrice P Beatrice P is offline
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Quote:
Originally Posted by mrsD View Post
That NeuroOptimizer is designed to deliver FOUR capsules for the chart it lists:

At once capsule a day, you won't get much. It duplicates the lipoic acid (low amount anyway) and carnitine you are already taking.

You are paying quite a bit of money for the choline alone. 2 eggs with yolks a day would do better for you and some peanuts!

Take that B12 on an empty stomach and get tested for Vit D...and then you'll be good to go.
Thanks a lot for your remarks, Mrs D, there are really helpful! I will increase my dosage of NeuroOptimizer and try not to duplicate the other supplements. I have not been tested for D vit deficiency yet, I wonder what can happen if I take a 500 ui a day without being tested (I forgot to mention that too in the regimen).
I actually suspect that the underlying cause of my neuropathy is an intoxication with Ciprinol (fluoroquinone antibiotic) during a holiday in Egypt few years ago (where I got a bacterial infection from food). Could this mitochondrial damage happen with a 3 years delay?..i wonder.Thanks again & congratulations for all your efforts to help people in need.
beatrice
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Old 04-05-2011, 02:22 PM #6
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It may sound ridiculous to ask, but I was wondering if using sleeping pills in low dosage, for example Lorazepam 0.5 mg at night is ok (I need to be able to go to work and perform well...) since I understood that almost all synthetic drugs can damage mithocondria...What would be a "softer" to the system sleeping pill, but also efficient thru the night? can you please advice? Many thanks in advance.
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Old 04-05-2011, 02:41 PM #7
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Lightbulb

Here is the Vit D thread:

http://neurotalk.psychcentral.com/thread92116.html

In my case I took 1000IU for 8 mos out of the year (in summer I am outside alot and tan up)... for 2 years. Then I increased to 2000IU, for a year, then 4000IU (when I started to feel better) then 5000IU for a year and then my doctor tested me.

I was at 43. Still too low for her! She wants me at 70! So now I take 10,000 IU daily one day and 5,000 IU the next and alternate. We'll retest in fall.

The general rule is 1000 IU per 10 units blood work at US sample rates. Other countries have different reporting concentrations. I don't have offhand a conversion factor if you are not in US. Watch the video however.

In Australia they use 4000 IU D3 daily until people come up in value as one of the videos explains.
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Beatrice P (04-07-2011)
Old 04-06-2011, 12:47 AM #8
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Quote:
Originally Posted by Beatrice P View Post
It may sound ridiculous to ask, but I was wondering if using sleeping pills in low dosage, for example Lorazepam 0.5 mg at night is ok (I need to be able to go to work and perform well...) since I understood that almost all synthetic drugs can damage mithocondria...What would be a "softer" to the system sleeping pill, but also efficient thru the night? can you please advice? Many thanks in advance.
Some people are taking a small dose of amitriptyline (Elavil) at night. It's not a sleeping pill, (tricyclic antidepressant that's been around forever) but it does make some folks drowsy, as well as attenuating the burning/pain.
http://neurotalk.psychcentral.com/thread144000.html

Doc
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All opinions expressed are my own. For medical advice/opinion, consult your doctor.
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