Vitamin B12 deficiency and small fiber neuropathy

Hello, @mikeg0852, @rwinney, @artscaping, @johnbishop, and all...Rachel, as always, you have great information and help for us. Chris, it's good to 'see' you again. I've missed your dear personality...Mike, I've experienced many of your issues myself. In my case, I'm now thinking it's a DNA issue for me and the inability to absorb B's by my gut, the way they get to the cells and organs and help us all over. I've had huge issues for many years that now we think go back to that one thing, lack of B absorption. Now I find I have D deficiency, B deficiency, and Ferrous deficiency in my bone marrow. Iron deficiency isn't indicated in regular blood tests, and requires a specific test for diagnosis.

I take Super B supplements, Centrum Silver for Women, D3, Zinc, VitronC (iron supplement + C required for iron absorption), magnesium, 2X monthly B shots I give myself, and several months ago had 2 ferrous infusions.
Walking into the hall for the infusions, I almost fainted and lost my balance. I use a walker most of the time and a cane at home. After the infusions, about a week+ later, I began to be a different person. In amazing ways. Energy, outlook on life, breathing was improved, walking was steadier, could get out of a chair without struggling, could turn over in bed without struggling..and such. It was absolutely a miracle!

I'm going this week for follow-up bloodwork to test all these levels and see what's happening. I may need additional infusions as time progresses, 2=3X annually. May not need them. I'm continuing to take the VitronC daily and may be absorbing it. Don't know. I am thrilled at the changes in my life.

I'm able to live a life again, almost. I can walk better and more. I just last week, for the first time in many decades, walked over 6K steps or so says my FitBit. I've also moved forward in my thinking and depression/anxiety issues. I now accept all this stuff, don't like it but accept it, and now am making the changes in my life to move forward and have good days. It's amazing the transformation.

Please, please get to a doctor who will listen and steer him to these tests to determine your levels. They hide from normal tests and influence our bodies in a multitude of ways. All of us. The feet are still numb, still hurt, and badly at times. I still have autonomic neuropathy but I'm dealing with everything so much better and improving in every way. I can't tell you how different I am. I think the new me is the real me I've met for the first time in many, many years. I like me, eh?

Thank you Connect friends, Mayo staff, and providers, and of course, God for bringing me to this place of life where I'm able to have good days, have learned how to rest, and give my body time to recharge. I'm thankful for my stubbornness and determination to find real answers. For the doctors who finally listened and had the knowledge and mental questioning to find what was underlying the symptoms.

Keep pushing to get to the bottom of your causes of symptoms.

Blessings and may you each move forward in this journey! Elizabeth

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I would suggest getting shots before B12 pills. Brings level up much faster

What was your number?

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I'm sorry to hear that, @ess77 . However, I am thrilled to hear you are seeing progress from your ferrous injections! What type of test did you need to diagnose this? I saw you mentioned that it was not from a regular blood test. I will keep you and your recovery in my thoughts!

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Hi @rwinney ,
Unfortunately, insurance does not cover the functional medicine provider. The supplements are very expensive as well. I don't buy them directly from her but she sends me a prescription link to a site called Fullscript to purchase them.
I'm questioning if I even have Lyme disease. All my regular Lyme tests from other doctors were negative, but the first time I met her, she brought up Bartonella as a possibility, and when she sent it to a more specific lab, that one came up positive. She has not put me on antibiotics as she feels treating it through diet and herbs is the better and more natural way. My only complaint is the severe neuropathy in my feet. I do feel like my energy levels have improved since seeing her, but I wouldn't have listed severe fatigue as a symptom, as is the case with most Lyme patients. I'm fearful of stopping her treatments because I have seen some progress, but I am left wondering whether it is just taking time to heal from the B12 deficiency or if the Lyme treatment is actually working.
That is interesting you were able to stop all of your supplements. It must be quite a relief to not have to carry all of that around!
Thank you for sharing the link. I will definitely check it out. And I will definitely keep the 17 year-old who you mentioned in my thoughts! Thank you for the messages. I am doing my best to stay hopeful.

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Hello, @mikeg0852, @rwinney, @artscaping, @johnbishop, and all...Rachel, as always, you have great information and help for us. Chris, it's good to 'see' you again. I've missed your dear personality...Mike, I've experienced many of your issues myself. In my case, I'm now thinking it's a DNA issue for me and the inability to absorb B's by my gut, the way they get to the cells and organs and help us all over. I've had huge issues for many years that now we think go back to that one thing, lack of B absorption. Now I find I have D deficiency, B deficiency, and Ferrous deficiency in my bone marrow. Iron deficiency isn't indicated in regular blood tests, and requires a specific test for diagnosis.

I take Super B supplements, Centrum Silver for Women, D3, Zinc, VitronC (iron supplement + C required for iron absorption), magnesium, 2X monthly B shots I give myself, and several months ago had 2 ferrous infusions.
Walking into the hall for the infusions, I almost fainted and lost my balance. I use a walker most of the time and a cane at home. After the infusions, about a week+ later, I began to be a different person. In amazing ways. Energy, outlook on life, breathing was improved, walking was steadier, could get out of a chair without struggling, could turn over in bed without struggling..and such. It was absolutely a miracle!

I'm going this week for follow-up bloodwork to test all these levels and see what's happening. I may need additional infusions as time progresses, 2=3X annually. May not need them. I'm continuing to take the VitronC daily and may be absorbing it. Don't know. I am thrilled at the changes in my life.

I'm able to live a life again, almost. I can walk better and more. I just last week, for the first time in many decades, walked over 6K steps or so says my FitBit. I've also moved forward in my thinking and depression/anxiety issues. I now accept all this stuff, don't like it but accept it, and now am making the changes in my life to move forward and have good days. It's amazing the transformation.

Please, please get to a doctor who will listen and steer him to these tests to determine your levels. They hide from normal tests and influence our bodies in a multitude of ways. All of us. The feet are still numb, still hurt, and badly at times. I still have autonomic neuropathy but I'm dealing with everything so much better and improving in every way. I can't tell you how different I am. I think the new me is the real me I've met for the first time in many, many years. I like me, eh?

Thank you Connect friends, Mayo staff, and providers, and of course, God for bringing me to this place of life where I'm able to have good days, have learned how to rest, and give my body time to recharge. I'm thankful for my stubbornness and determination to find real answers. For the doctors who finally listened and had the knowledge and mental questioning to find what was underlying the symptoms.

Keep pushing to get to the bottom of your causes of symptoms.

Blessings and may you each move forward in this journey! Elizabeth

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Hello, my friend, @ess77 -
Such wonderful news you are sharing! 🤩 I'm very happy for you.

What? 6K steps! You GO girl!!! I believe that FitBit.
All things good are wished for you. Keep on keepin' on.
You inspire!

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Hello,
Has anyone out there tested positive for Bartonella and linked it with burning pain in the feet? I’ve had neuropathy for 19 months. At month 12, it was discovered I had low B12 and have been doing supplements. Things have gotten better but I still have very bad days. I went to see a functional medicine doctor and had a positive Bartonella test which she says caused burning pains in the feet. I’m on my 6th month of herbal treatment with her, but my neurologist thinks it’s a waste of time and money. He preaches patience and recovery through B12 supplements. Has anyone had a similar story? Thanks!

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You definitely have mitigating circumstances and that makes it hard. Having different diagnoses simultaneously can be difficult to navigate what's responsible for what. It's great that you have some improvement and are making progress with your functional medical provider. Stick with it as that is where your gut brought you in the first place, right? As far as B-12, give it time and stay the course.

Do you journal? It's not for everyone, but sure can help get swirling thoughts out of your head and onto paper. It's a good way to release emotional stress. Of course as with most things, moderation is key. Writing down thoughts of fear, frustration or worry should be time limited. One tip is to set aside 10 -20 minutes each day to journal, preferably mid-day. It's helped me through the my journey. What do you think? Think it could help?

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Yes, I do! I journal every day and it has been incredibly helpful!

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@mikeg0822 -
Hey there, Mike. Yes, I have experience with B12 deficiency, most likely being the cause of small fiber neuropathy. Thank you @artscaping for thinking of me to help contribute.

I had begun to notice mild symptoms like racing heart and fatigue, then progressed to weakness, numbness, burning, vibrations, shocking pains, tingling and vibrations. A skin punch biopsy detected small fiber neuropathy and then it took several months after to get through a variety of testing to narrow down the underlying cause. Low B12 was the only factor that my neurologist came up with. I began weekly B12 injections for a while then every other week until blood testing showed I was within range. My doctor told me that nerves can regenerate themselves, but it may take 2-3 years.

Here's my advice...believe your doctor that you will recover. Think positive. Don't worry about woulda, coulda, shoulda, that's over. Eat a healthy diet and get proper nutrition through food. Have patience. Exercise and stay as active as possible. Find joy and distraction, and know...

You got this!

How are you doing currently? You mention making progress already which is awesome! How have you been managing symptoms?

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