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Rebirth After Profound Vitamin B7 Deficiency: Thanks to My Little Superman

Cutest Superman EVER.

My great nephew is my little superman.

Re-birthday

One year ago on my fiancé’s birthday I received a call from the doctor’s office letting me know that I was profoundly low on vitamin B7. I had decided to ask to have a vitamin B7 test done after my great nephew was born.  He had gene testing done which came back positive for him as a carrier for Biotinidase Deficiency. He does not have the vitamin B7 deficiency but is only a carrier. I unfortunately lived 43 years with a disease that could have been easily treated; if nutritional deficiency testing was done before I was treated for Rheumatoid Arthritis. Thanks to the March of Dimes for pushing for gene testing on newborns to identify babies with Biotinidase Deficiency. I really have to wonder why this great healthcare system missed such an easy fix. The current healthcare system had MANY chances in 43 years to figure it out since I was always sick.

I cannot believe how much has changed in the last year. I am pain free and I have an amazing amount of energy. My spine and shoulders are stronger and in the last few months I had no hearing or breathing issues until I recently gave a few tubes of blood for testing. That night I felt my upper back weaken and my breathing and hearing issues started up again.  I have been improving in the last few weeks since I gave several tubes of blood. I won’t be doing any blood tests for awhile; I enjoy being able to hear and breath. I will have the test results back in a few days; the tests were to recheck my nutritional levels.

Last year when I found out about the vitamin B7 deficiency I decided to start taking a multivitamin and then had my nutritional levels checked.  I was found to be low on several nutrients like oleic acid (omega 9), vitamin D and zinc and borderline on several other nutrients. At that time I would forget if I took my pills as soon as I turned around, so within a few seconds I would already forget I took them. Today I am able to remember taking them, and I remember to give my fiancé his pills as well; I am also able to recognize which pills are which by color.

A year ago I could not turn my head because my spine and shoulders were so stiff. When I started taking biotin I started being able to move my neck and if I bent over I could feel the weight of my head jolt.  It was like something was no longer attached, I could feel it drop maybe an inch then the jolt of the weight of my head. The closest example I can think of is to try dropping a melon in a shopping bag and feel the weight of that as it drops to the bottom. Now my spine and shoulders are holding my head up without issues.

Lloyd is light as a feather; his arm used to feel like 50 pounds when he laid it on me and now his whole body feels like air. Before my 11 pound dog could not even lay next to my leg because the pressure of his body lying on my leg muscle would increase the pain I was dealing with too much. Last year during the last month before I found out, I was even having trouble pushing myself up from the bed. It felt like my chest was caving in and it hurt a lot. I am just really amazed at how much has changed and how much I can do now. I can pet Hershey and even pick him up!

My hearing is so very different in crowds now. Before I could always hear the people farthest away in the room the loudest and the words would be mixed together so much I could not understand what was being said, just loud jumbled up words. The person in front of me would sound muffled, so low I could not understand what they were saying.  Now I can be in a crowd and hear the different conversations and individual words are clear. The person in front of me does not sound muffled by the roar of the crowd speaking at the same time in the room. Recently, I have walked away from groups of people speaking to each other because I was starting to cry from feeling so happy to hear everyone. It is so different to hear everyone clearly and not feel drained by the loud noise of blurred words like before.  I remember one time my daughter called me and I could tell it was her voice but I could not follow along or engage in a conversation because the words were just jumbled together but I didn’t want to stop hearing her voice.  It is strange going from feeling fatigue just from sound to feeling warmth from hearing people speak clearly. Continue reading

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Biotinidase Deficiency Not RA

Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.

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