NeuroTalk Support Groups - Success Stories?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Success Stories? (https://www.neurotalk.org/peripheral-neuropathy/185848-success-stories.html)

I will highlight your quote in red for my comments... easier to understand that way...;)

Quote:

Originally Posted by jcgrome (Post 969580)

MrsD - you aren't kidding!! Amazon's prices are amazing! Thanks for saving me a good portion of my life savings :-) I did pay a ridiculous $20.00 to get them all shipped over night but I can't wait a day longer to try to heal myself.

I know that you recommended just doing the Benfotamine & CoQ-10 for a month to see if there is improvement before trying the ALA & R-Lipoic but I can't wait. I'm going to essentially bomb my body with nutrients & if I get any improvement (hope! pray!) then I will slowly wean things out. I know it's the more expensive route but my symptoms are WORSENING! Every single day something hurts more or the pain goes to a new part of my body. And I am on a wait list thru October to get into the Neuropathy Department at OSU. I'm terrified of being in a wheel chair or something by then :-(

So other than thanking you for the guidance - I wonder if you might pleae take a second to tell me what dosage of my new supplements I should be taking? Thank you in advance. SO MUCH!!!

Doctor's Best Best Stabilized R-Lipoic Acid Featuring Bioenhanced Na-RALA (100 mg), Vegetable Capsules, 60-Count
Sold by Amazon.com LLC
$16.29
Start at one a day of this, and take in the morning on an empty stomach. If you have heartburn, eat a little food, not a full meal. Only a few report the heartburn, tho. Take it with alot of water so it dissolves in the lower stomach, and not get caught up high.

Jarrow Formulas Acetyl L-Carnitine 500mg, 60 Capsules
Sold by Amazon.com LLC
$12.09
Start at one a day of this --you can work up to 4 a day, but that may not be necessary. This has limits to absorption, and so all doses should be divided up so as to make for most success. Jarrow is a good company.

Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Sold by Amazon.com LLC
$13.99
Since you used to drink wine, start at 300mg a day, and see how you feel. After about 3 months you can reduce to one a day and see if your improvements hold at that.

Folic Acid B12 90 Tabs
Sold by ProLine Refills
$15.00
I can't find this... do you have a link?
I need to see the formula to comment on it. Sorry.

I used to use iherb.com for many years. At one time they were the only place with the more unusual supplements like methylcobalamin, etc. But now Amazon has them all that I use and the free shipping is lower at $25. We often shop for other things at Amazon..cat toys, a music CD every once in a while, and hard to find tools/kitchen things. I even found some seeds on Amazon once! Our young cat loves the plastic springs that come 10 in a pack. She carries them around the house and plays for long periods of time with them! Sometimes yowling her catch with glee! ;)

Give the supplements a good six months. If you see NOTHING in the way of improvements, that would point to a hereditary PN. But most of our members do see something change. Keeping a journal may help, if you're up to that. Drink enough water, to keep hydrated, which is always important when taking supplements.

Quote:

Originally Posted by jcgrome (Post 969567)

All the best to you & your wife sddave. I can sympathize with her pain, being in the midst of it myself. It's a horrible feeling to never be able to get completely comfortable & to have life's little things taken away due to pain (I never thought I'd miss doing laundry!) Please know that my thoughts are with you & everyone suffering from this puzzling ailment. I'll be sure to keep you all posted if I have any success with my new vitamin/diet regimen.

Hi Jcgrome,
I totally understand how you miss doing laundry! I never thought I would miss it either. I miss a lot of things that were taken for granted before I became sick. Most of all working. Carrying my granddaughter is another. She is getting to heavy for me.
What I do every morning is remind myself to Thank God for what I do have. Some days it is difficult but most days I do it as soon as I open my eyes. That is usually when I take a second and say yes the pain is still there. Then say thank you for other things!
Hopefully, one day we will all be pain free! :)

MrsD here is the link for the Folic Acid combo. I really can't tell you how much your guidance has given me hope. Thanks again!!

http://www.amazon.com/dp/B0006M0A8O/..._M3T1_ST1_dp_4

Oh, my....

When you are done with this, please contact me for some good brands of methylfolate and methylB12.

The other ingredients in this product are giving me some heebeejeebees right now. :o

Quote:

Folic Acid B12 90 Tablets by Standard Process. Folic acid and vitamin B12 taken together work to prevent birth defects of the central nervous system and help to mature and strengthen red blood cells. Folic acid has also been shown to have protective cardiovascular benefits. Folic Acid B12 is also essential in the important processes of DNA formation and genetic replication.These statements have not been evaluated by the Food & Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease. Ingredients: Serving Size: 1 Tablet Calories 2 Folate 400 mcg 100% Vitamin B12 6 mcg 100% Proprietary Blend: 350 mgCarrot (root), calcium lactate, bovine liver, porcine stomach parenchyma, defatted wheat (germ), bovine spleen, ovine spleen, bovine adrenal Cytosol extract, oat flour, and ascorbic acid.Other Ingredients: Honey, cellulose, folic acid, dicalcium phosphate, and cyanocobalamin. Dosage: One tablet per day, or as directed.

Bovine sources of tissue which may contain nerve tissue can be a vector for mad cow. I avoid all those products for that reason.

If you have intact intrinsic factor the B12 6mcg may work.
If you have no methylation errors, the folic acid may work.

After many years online it has occurred to me that people who show up on internet forums have some "problem". Today with our new DNA tests available, we can see the problems can be a common mutation in methylation. So one person with intact MTHFR enzymes can methylate folic acid properly. And not likely show up here. All the others, end up with obscure problems tied to methylation failures, and end up with PN and other diseases/symptoms.

The test can be done today without a doctor, and the price just was lowered:

https://www.23andme.com/

So do you think I should skip it? I don't want to do anything that might hinder my potential healing!! Why would they add all that stuff in??

And it all just arrived... less than 24 hours after I ordered it! Amazon is amazing....
And speaking of Amazon purchases, if your cat is anything like mine you don't need to buy it toys... give her the ring off of a gallon milk jug or a pony tail holder. Either one is worth hours of entertainment around here :-)

And why would I need a DNA test? I'm confused about the methylation stuff :-)

Quote:

Originally Posted by glenntaj (Post 969555)

--has she been tested to see if she has chronic inflammatory demyelinating polyneuropathy (CIDP), which is often considered to be the less acute onset, lingering version of Guillain Barre (though there is some overlap in possible presentation)?
...

Hi Glenn, thank you for your information. Approximately 6-8 months after onset, our doctors decided it wasn't CIDP, and confirmed GBS. Maybe they were wrong. In any case, IVIG was given many times in the first few weeks after onset, as well as plasmapheresis, but neither one since.

It is so frustrating to see Web sites on GBS that talk about IVIG like it saves the day, and then say most patients "have a full recovery" thereafter. Grrr! I suppose a diagnosis of CIDP might call for a course of IVIG treatment, months or years after initial onset? I'll inquire of our pain doc.

Thanks!
Dave

Hi mrsD, thanks for your quick reply and info. In fact, my wife did get IVIG, as well as the plasma, in the first few weeks after initial onset. Nevertheless, she did have full body paralysis and was put on a ventilator. After about six weeks, she was off the vent. After about four months, she came home. After about eight months, she could walk again. But always the pain! Gabapentin, Lyrica, Oxycodone, Neurontin, nothing has done anything for pain. Hers is a difficult case.

Quote:

Originally Posted by mrsD (Post 969557)

...
CIDP and GBS are autoimmune illnesses, and treated as such.
All the supplements we discuss that enhance remyelination, may be helpful to healing. But if the autoimmune process is not suppressed, supplements won't be able to keep up with any healing needed.

I will try to get her back on full vitamin supplements etc. to approach from that direction, while seeing what meds our pain doc comes up with next. *Sigh*. And I'll ask again about GBS vs. CIDP diagnosis, and what effect that conclusion might have on treatment.

Thanks, I'm glad I found this board and the people who contribute their expertise/experience!
Dave

MrsD - just wanted to let you know that my Doc agreed with you regarding ditching my new Folic Acid/B12. She has me taking this instead http://www.pureprescriptions.com/nut...FQjf4AodUh8A1w
She also suggested I take my Magnesium transcendentally so I guess my new Cal/Mag was a waste of $$ as well.
She also gave me Inositol & L-Glutamine powders to take before I exercise, go to sleep or if my pain is very strong.

At this time she feels that my Neuropathy is in relation to vitamin deficiencies exacerbated by alcohol consumption. She said that with my new diet & supplements I should be feeling better in a week. If this is true I will be over the moon but I'm trying not to get my hopes too, too high. If it does work I will come back & list every single thing that I've done differently. Right now I need to find myself the largest pill organizer thingy ever known to man!

Thanks again for everything....