Vitamin B12 deficiency and small fiber neuropathy

Hi I hope you got my Bartonella story?. I have Small fiber neuropathy now as results from punch biopsies done years after being treated for Bartonella, Lyme, babesia and another one.

@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?

@rwinney thank you so much for the positive message. Gives me so much hope. I definitely have seen progress, and at times, I’ll have 4-5 good days in a row with minimal symptoms. However, I am in a rough stretch now of 13 days where my feet keep burning and tingling and it feels like I’m back at square one. Nothing has been linear and it’s all up and down. It’s really difficult to manage on the bad days and those are the days I have trouble coping and get very down. How are you doing? Were you able to see recovery over the 2-3 year period? Thank you again for reaching out!

You're welcome! It's tough to have better days then get hit with a flare. We enjoy those better days so much that it's hard to lose them again, albeit temporarily. The ebs and flows are part of it all. Try to focus on the fact that better days will come again. Positive mindset is very helpful. Positive self-talk, also. Remind yourself that you've survived 100% of your bad days prior and you will get through them again. Do you get relief from nerve medication or do you prefer to not take it?

I'm doing well. Yes, certain neuropathy symptoms have subsided and I would agree that it took 2-3 years, but we are all different. You very well may take less time. It seems you are already making good progress.

Hang in there. It's definitely a life changing event, but don't let it rule you. How are you handling every day life? Are you able to work? Do you exercise?

Hi @rwinney thank you again for the positive message. It certainly is life changing. I’m not taking nerve medication as I am afraid of the side effects and have heard it doesn’t help much. To complicate things, I’m seeing a functional medicine doctor, and I tested positive for Bartonella (a form of Lyme disease), so I’m on herbs and supplements for that. However, my neurologist thinks it is a waste of money and time. I’m just lost and want to do anything I can to help.

Every day life is okay. I’m working as a physical therapist. Otherwise, I’m very healthy and I am able to go for long runs and exercise frequently. That’s my escape. However, on the painful days, all I seem to be able to do is focus on my feet. They can get to the point where they burn all day and I can’t enjoy anything. It has definitely affected my mood and relationships. I’m 28 years old (26 when symptoms started) and I’m onto my 8th month after my first B12 shot. I guess it’s a lot of “why is this happening to me?” I hope I can recover at least 80% of what I was before.

Sorry for the long message but it really helps to talk it out and share with someone.

Hi @mikeg0822 No worries about a long message. Talking it out is good. I understand not wanting to take nerve medication due to side effects. Good for you! If you can avoid, I say avoid.

Interesting about the difference of opinions regarding supplements and herbs. Two totally different doctor perspectives. I'm curious, does insurance cover your functional medicine doctor? Do you buy products from your functional medicine doctor? Are they to treat ongoing symptoms or have you been given antibiotics for Bartonella. I'm not too familiar with the form of Lyme disease. How are your symptoms overall from it?

I attended the Mayo Clinic Pain Rehabilitation Center for a chronic pain syndrome called Central Sensitization. It's a central nervous system and peripheral sensory input system disorder which sort of an umbrellas other diagnoses like neuropathy, migraine, IBS, sleep disorders, etc. When I went into the program, I was taking 21 pills alone of daily herbs and supplements, by my own choice, to try and help with neuropathy mainly. I hated swallowing every bit of them, too. Part of Mayo's PRC program is to help people wean off opioids and other non-medically necessary meds. I knew going in that was the deal, which I wanted, but what surprised me was the fact that I actually met with a Mayo pharmacist team after they researched everything I was taking in regard to why and determined what was medically proven to help versus not. Let me tell you, I walked out of there a happy girl and essentially stopped taking everything. I received printed out proof of the research as well.

At the end of the day, you have to do what's best for you and if that means explore and try, so be it. There are always different opinions out there as to what help, what works...it gets confusing as crap!

It's great that you're still working and moderating through difficult days. I hope your employer is understanding and works with you. As a physical therapist you have empathy for your patients and understand moderation and modification. I would think that helps you navigate your own needs. So glad you run! What a good way to stay active and get an endorphin rush, and beef up the serotonin.

I think we all wonder, "why is this happening to me?" It's a natural feeling, but at some point it has to turn into, "ok, so this happened to me." Everyone goes through those stages in their own time. Some find acceptance and move on to a better place emotionally, and some wallow in the "why me" and are held captive. You are young and it must be hard. I felt young at 41 when my health began changing and asked the same question. I've recently been posting with a mom of a 17 year old who has CRPS and can't complete her senior year of high school. Why any of us?

Have you connected with other members in the Neuropathy conversations on Connect? Here is one that might be helpful as members share tips about burning feet, tingling and more -
https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
Hang in there, Mike, you're doing better than you think. On those difficult days, you may have to gut it out and positive self-talk your way through them one day at a time knowing a better day will come. Keep the faith and keep hope alive that you will recover nerve function.

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

What was your number?

I'm on nerve medication. Really few side effects (at least for me). At first my mouth was extremely dry but that has tapered off.

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

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.