Living with Neuropathy - Welcome to the group

@johnbishop, Thanks, again. elizabeth

@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.

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.

@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/

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

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

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

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

@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

@sunnyflower Hello, Sunny flower. I've missed you. Hope you're better and didn't suffer all this time with the vaccine side effects. My reactions lasted about 18 hours, then when fever broke, so did all the problems and I began to improve. No fun, but I know for sure I have antibodies in this body! A good thing.....

I can't wait to get your response to my post to you several days ago, Lady, when you were discussing the posh, funky new rollater your husband just put together for you. Well, I went nuts reading that and immediately went online and bought one for myself. We live, I think, around the world almost from each other, so won't be 'knocking' into you, but wouldn't matter. We'd just end up in a race or whatever....

I hope you are better and energy is up. We're getting into the lovely time of year for flowers......let me know how you're doing and after you read my message. We really are 'sisters in 'bling'...Blessings your way and you get better and better! elizabeth in Florida