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-   -   Progress, I think (?) (https://www.neurotalk.org/peripheral-neuropathy/183787-progress.html)

Wide-O 02-10-2013 08:35 AM

Progress, I think (?)
 
A little update: the good news is that I seem to be doing better after a couple of weeks taking supplements. Mind you, I find it hard to pinpoint, as the symptoms seem to vary from day to day, and sometimes hour to hour.

But the redness of the underside of my feet is totally gone. So are the stabbing pains. I still feel like walking on rocks, but (it might be my imagination) not as bad as some time ago.

Sadly, I also seem to have developed arthritis. Mainly knees/elbows/fingers. Which of course makes it harder to judge progress, but fortunately the pains are quite "different", so it's possible after all.

The doc rx'd me Meloxicam for the inflammation, which of course I looked up here first thing when I came home. ;) OK, not to bad, so that's what I take now.

I have to admit I fell for the "shotgun" method, so it's very hard to describe what exactly is working. This is what I currently take, based on reading here and focusing on repairing alcohol damage:

  • Methylcobalamin 5000mcg (Swanson) empty stomach
  • L-methylfolate 1000 mcg (LifeExtension)
  • Benfothiamine 300 mg (D. Best) twice a day for starters
  • Stablized R-Lipoic Acid (D. Best) - empty stomach (does seem to provoke reflux sadly)
  • PepZinc (D. Best) - zinc 8 mg
  • D3 2000 IU (D. Best)
  • Real Krill (D. Best) with 512 mg DHA/134mg EPA
  • Acetyl L-Carnitine 588 mg (D. Best)
  • CoQ10 100 mg (D. Best) - with main meal
  • Chelated Magnesium (D. Best) 200 mg
  • Vitamin B6 (Swanson) 100 mg every 3 days
  • Biotin (Swanson) 5 mg - not sure this works, but alcohol can deplete it, and I'm experiencing serious hair loss
  • Panthotenic Acid (Swanson) 500mg - still waiting for this.

Quite a bit of work to swallow, but I guess it's a nice ritual.

Any comments or recommendations based on this list would be appreciated. My doc also recommended glucosamate-sulfate 1500 mg for the arthritis, any comments on that? Thanks. :)

Edit: I did show this list to my doc, and she had no problems with it. She also did not subscribe to the "PN is not curable" mantra. She is not a specialist, but she has seen patients recover. She was also about to tell me to take some krill oil before she saw my list FWIW.

mrsD 02-10-2013 09:21 AM

Thanks for the update. This is a good start. You may after time
be able to modify some items, by lowering doses. Once the
systems are up to snuff, less of some may be needed.

But that would be 3 to 6 months down the line.

Sallysblooms 02-10-2013 05:04 PM

Combining supplements has worked well for me. I have integrative MD's that know doses and great brands and what works together. I get blood tests several times a year. Do you have a good doctor to guide you?

I have a schedule, supplements to take three times a day

I hope you continue to improve.

Wide-O 02-11-2013 11:52 AM

Quote:

Originally Posted by mrsD (Post 955987)
But that would be 3 to 6 months down the line.

Agreed. I'm going to give this time, even if there are temporary setbacks etc.

Quote:

Originally Posted by Sallysblooms (Post 956102)
Do you have a good doctor to guide you?

Not in that she is an expert in PN - she's a GP after all - but in that she is willing to work with me, takes my suggestions into consideration, and keeps me from making mistakes/follows up what I'm doing. All things considered I think that is positive. She's also given me the details of a good neurologist, but at the moment I'm not sure if it's useful to schedule an appointment; I'm not sure what he/she could do for me, to be honest.

Quote:

I hope you continue to improve.
Thanks. :)

mrsD 02-11-2013 02:57 PM

I have one suggestion... take the biotin away from the lipoic...space them out. When the B5 comes, that too.

B5, biotin and lipoic all share the same transporter in the blood.
If you take them together there may be too much competition for it and some of the doses may be lost.

Because the biotin is so strong, you could take it on alternate days, that way it would be less likely to compete.

The doctor supervision is important for monitoring kidney functions.

Wide-O 02-13-2013 03:11 AM

Quote:

Originally Posted by mrsD (Post 956346)
I have one suggestion... take the biotin away from the lipoic...space them out. When the B5 comes, that too.

Aha. Thanks for that. I already spaced the lipoic acid away to an hour before my evening meal. Will take the B5 late at night then.

Quote:

The doctor supervision is important for monitoring kidney functions.
Oh absolutely! We have a schedule to test my blood every 3 months to monitor kidney/liver/vit B12/D/thyroid etc.

I do understand that many of these vitamins are "harmless" only if your kidneys fully function. A friend of mine had a serious kidney failure a couple of days ago, and decided to go on a vegetarian diet. I did mention B12 to her, but had no idea on how that could build up if your kidneys only work at 35%... I suppose that changes a lot of things.

Thanks again for the tip about spreading those 3 apart.


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