1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

steeldove | @steeldove | Mar 9, 2021
In reply to @avmcbellar "@LeeAase Hi Lee, 36 hours does sound like a long time. Good to know, thank you...." + (show)
@avmcbellar

@LeeAase Hi Lee, 36 hours does sound like a long time. Good to know, thank you. I never had a bad batch. It takes practice to perfect the method. When I made my yogurt in a gallon sized bowl with a lid, I used the warmth of my garage while the sun was still out. After about 8 hours the curdled milk was ready to strain through a cheese cloth. So within a day my yogurt was ready. Luckily, I never had left the milk over night. I was afraid for it to turn into cheese which I do not like at all. As I was growing up, my dad made cheese from scratch using the milk from our goats. I disliked the smell. Thanks again Lee. Do you grow bacteria for bread too? Toni

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=46rom The New York Times:

Women Report Worse Side Effects After a Covid Vaccine

Men and women tend to respond differently to many kinds of vaccines. =
That=E2=80=99s probably because of a mix of factors, including hormones, =
genes and the dosing of the shots.

=
https://www.nytimes.com/2021/03/08/health/vaccine-side-effects-women-men.h=
tml?smid=3Dem-share=

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ess77 - Elizabeth | @ess77 | Mar 9, 2021
In reply to @johnbishop "@athenalee, Just from a quick glance the Nuturna Neuropathy Support Formula contains a lot of the..." + (show)
@johnbishop

@athenalee, Just from a quick glance the Nuturna Neuropathy Support Formula contains a lot of the same supplements as the Protocol 525 but they don't list how much with the exception of 600 mg ALA and they do not specify ALA, S-ALA or na-R-ALA. The Protocol 525 na-R-ALA supplement is a morning dose of 2 capsules and evening dose of 2 capsules for 1200 mg. The other difference that would bother me is B6 that the Nuturna proprietary blend contains. That is because unless you are deficient in B6 it's the one that can make your neuropathy worse (in my non medical opinion).

- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

No matter what type of supplement is used, I would run it by my doctor or pharmacist before using it.

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@johnbishop, Thanks, again. elizabeth

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2021
In reply to @rtvin53 "Hi John, What is your opinion of the protocol 525? I was considering trying it but..." + (show)
@rtvin53

Hi John,
What is your opinion of the protocol 525? I was considering trying it but it’s just kind of uncertain buying an unknown brand of vitamins?

Thank you

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@rtvin53, I have been using the Protocol since 2016 when we just had a list of the best quality of the supplements and vitamins that the groups research put together. It was a lot more pills and it was continual ordering since the supply ran out on different schedules. The groups leader and some of the members found a local pharmaceutical company that could combine the same quality of supplements and vitamins into fewer pills which made our ordering process a little easier with the side benefit of being easier to swallow less pills. I don't have a vested interest in the groups product but it has helped myself and others.

While I do not have neuropathic pain with my small fiber PN, I have the numbness and it has seemed to slowed or stopped the progression of neuropathy in my legs and made it a little better. After 2 months of taking the protocol, my numbness went from just below the knee to just above my ankles which is not a whole lot but it's something my neurologist said was going to get worse not stay the same or show improvement. Others in the group with different types of neuropathy and associated pain have been able to taper off of their pain drugs after being on the protocol for a few months.

I don't think I would just blind order the product. Instead I would join the Facebook group, read their welcome page for new members and then search through the group and read the success stories from other members. In fact they encourage new members to do their own searching. It's easy to find other members success stories by searching the group using #theprotocolworks. I would also download and print a copy of the ingredients for the Protocol 525 and share it with your doctor or neurologist to make sure there are no conflicts with anything you may be taking like blood thinners. Here's the link from their website for the information to share with your doctor:
https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf They also have a link to their Facebook group on the website here - https://theprotocol525.com/. Just click the Join for FREE Support button on the main page.

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rtvin53 | @rtvin53 | Mar 10, 2021

Hi Colleen,

I was wondering if there is any kind of tutorial to help me navigate this support group site. I really have no computer skills and basically just go on the internet and make calls with my phone. Each time I go to this site I seem to get lost in how to determine which support group is which etc?

Sorry, I really do enjoy reading different postings but don’t know how to come back to them once leaving the site.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2021
In reply to @rtvin53 "Hi Colleen, I was wondering if there is any kind of tutorial to help me navigate..." + (show)
@rtvin53

Hi Colleen,

I was wondering if there is any kind of tutorial to help me navigate this support group site. I really have no computer skills and basically just go on the internet and make calls with my phone. Each time I go to this site I seem to get lost in how to determine which support group is which etc?

Sorry, I really do enjoy reading different postings but don’t know how to come back to them once leaving the site.

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@rtvin53, I thought I would jump in for @colleenyoung and let you know about this discussion that may answer all of your questions. This should help get you started and if you have any questions, just post them in the discussion.

[TIP] How to Use Connect: Step-by-step Instructions: https://connect.mayoclinic.org/discussion/tip-how-to-use-connect-step-by-step-instructions/

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ess77 - Elizabeth | @ess77 | Mar 10, 2021

Hello, John. @johnbishop .I JUST DID IT! APPROPRIATELY, YOURS IS THE FIRST.......MY NEW CONNECT EMAILS GO TO A CONNECT FOLDER IN MY PERSONAL FOLDERS, SIT THERE ALL TOGETHER UNTIL I GET TO THEM....NOT IN MY INBOX!!!!!!!

I'm so thrilled. You are a master teacher of all things cyber which I've never quite understood at all.....I'm almost making some sense from this stuff. Maybe I need a long rest as this girl is getting pretty competent, almost, kind of and not really at all not a bit.
Tks, John. You're the best.
Blessings always. elizabeth

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sunnyflower | @sunnyflower | Mar 11, 2021
In reply to @bustrbrwn22 "@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash,..." + (show)
@bustrbrwn22

@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

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This sounds like a nightmare! I am so very, very sorry that you had to go through this! This is simply unheard of! Oh my heart is breaking! I am so grateful you are better now and that particular way. Hang in there sister! I am praying that God bathed you in His presence and comfort and that you find His peace through Christ that surpasses all understanding, Philippians 4:7. ❤️🙏 @jakedduck1

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sunnyflower | @sunnyflower | Mar 11, 2021
In reply to @jakedduck1 "@sunnyflower Here are some seizure meds that can cause Neuropathy. Dilantin/Phenytoin Phenobarbital Tegretol/Carbamazepine Depacote/Valproic acid Trileptal,..." + (show)
@jakedduck1

@sunnyflower
Here are some seizure meds that can cause Neuropathy.

Dilantin/Phenytoin
Phenobarbital
Tegretol/Carbamazepine
Depacote/Valproic acid
Trileptal, Oxtellar XR/Oxcarbazepine
Lamictal/Lamotrigine

I believe that Neurontin/Gabapentin may also contribute to Neuropathy just like some seizure meds have increased seizures in some people.

Take care,
Jake

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Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never catch up! More poor health and more self care for it takes away a lot of time out of the day! I've had neuropathy for a long time before I took Gabapentin for it. I used to make my own CBD from real CBD oil at the dispensary but it took a long time to make 90 or 93 capsules 4 the month. It didn't seem to be helping. I've used the treatment plan that dr. Alan Frankel from greenbridge Medical in Santa Monica California gave to me. Anyway I couldn't take my pain anymore so acquiesced to use Gabapentin. It really does help the brain perceive pain to be a little more doll and since without it might being was intolerable and I guess really still is a lot of the time, in spite of the many side effects from the medication that I can't stand, I stay on it and even consider increasing when I can't take my pain anymore. I'm at a low dose 300 mg 3 times a day. Some people are over 3,000 mg. I hope you're doing well and I appreciate the list of medications you sent to me that can cause neuropathy or make it worse. I definitely will give them much consideration. Take care of yourself! Sunny flower

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2 replies
sunnyflower | @sunnyflower | Mar 11, 2021
In reply to @jakedduck1 "@bustrbrwn22 Okay, now here’s something that I almost didn’t believe when I first saw it… Different..." + (show)
@jakedduck1

@bustrbrwn22
Okay, now here’s something that I almost didn’t believe when I first saw it…

Different foods have what’s called an ORAC score that measures antioxidant activity.

The higher the score, the better that food fights free radicals in your body.

Now get this…

Broccoli has an ORAC score of 890…
Kale has an ORAC score of 1,770…
But raw cacao powder has an ORAC antioxidant score of 95,500.
That’s nearly 107X MORE free-radical fighting-power than broccoli!
Don't feel guilty about eating chocolate.

Jake

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Leonard, you just made my day!! Take good care, Sunny flower

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Leonard | @jakedduck1 | Mar 11, 2021
In reply to @sunnyflower "Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never..." + (show)
@sunnyflower

Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never catch up! More poor health and more self care for it takes away a lot of time out of the day! I've had neuropathy for a long time before I took Gabapentin for it. I used to make my own CBD from real CBD oil at the dispensary but it took a long time to make 90 or 93 capsules 4 the month. It didn't seem to be helping. I've used the treatment plan that dr. Alan Frankel from greenbridge Medical in Santa Monica California gave to me. Anyway I couldn't take my pain anymore so acquiesced to use Gabapentin. It really does help the brain perceive pain to be a little more doll and since without it might being was intolerable and I guess really still is a lot of the time, in spite of the many side effects from the medication that I can't stand, I stay on it and even consider increasing when I can't take my pain anymore. I'm at a low dose 300 mg 3 times a day. Some people are over 3,000 mg. I hope you're doing well and I appreciate the list of medications you sent to me that can cause neuropathy or make it worse. I definitely will give them much consideration. Take care of yourself! Sunny flower

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@sunnyflower
I took the maximum dose (3600mg) of Gabapentin, although I took the brand name Neurontin but it didn't help my seizures or Neuropathy. My brother currently takes 3600mg of Neurontin and he gets some relief. If it’s helping you, perhaps you might consider increasing the dose to see if it's more effective unless side effects preclude it.
Take care,
Jake

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