disease

Profound Adult Biotinidase Deficiency

Profound Biotinidase Deficiency

Biotin Disease Test

Blood test shows profound Vitamin B-7 Deficiency

I just found out I have a profound vitamin B-7 deficiency on Friday, July 19th which was Lloyd’s 60th birthday and it has been an AMAZING week filled with so many changes! Changes even include me jumping and dancing around the house, luckily the dogs do not seem to mind. Vitamin B-7 is also known as Vitamin H1, Coenzyme R or Biotin and the deficiency is a disease called Biotinidase Deficiency. This is crazy, I feel amazing and I am still in shock. Oh my god, this is crazy. I love my great nephew; he is the best great nephew EVER! Thank you God, thank you Shellie, thank you Tasha, THANK YOU Landon! This is a rare disease with only 1 in 120 people who have the mutant gene and 1 in 60,000 overall have the deficiency; 1 in 130,000 for profound deficiency and 1 in 110,00 for partial deficiency2. I have not found stats for adults, but adults3 are currently only being found when newborns are found to have the gene.

 

Great Nephew

This is my Great Nephew who was tested for the mutant gene that causes Biotinidase Deficiency

Symptoms Improve After Biotin

Changes in how I felt started the first day after taking Biotin; like not needing sunglasses while outside. I did not even realize I did not have them on and only discovered it while reviewing the photos Lloyd took during a KickStarter event for Dry River Brewing. I was even able to join in and follow along with discussions during the event. Each day I felt less stiffness in my joints and muscles, I never even knew how much stiffness was across my forehead and the back of my head. Three days after starting Biotin I found I can bend over and lay my fingers and part of my palm on the floor, I now have so much less muscle stiffness it feels really unbelievable. Four days after being on Biotin I noticed I had moisture in my mouth; I have been using mints for years. Each day I have noticed improvements like warmth in shoulders, hands and feet, no pins and needles, no numbness, no balance issues, no more running into things, no pain in my shoulders, back or spine.  Currently very little pain or stiffness in joints, neck and back, when I start to feel it I take a Biotin and it goes away.

 

Biotinidase, Rheumatoid Arthritis or Both?

That is the question, right now I am unsure. On Saturday July 20th, I stopped Mobic and Arava. Today I am due for my next shot of Cimzia and will be skipping that as well. I am even off allergy pills I was taking to reduce red itchy patches! Last month I had to do my shot late because of slight chest congestion and during that time my shoulders and spine increased in stiffness and pain. I mentioned it to my new Rheumatologist during my visit with him and he told me Cimzia would not help my spine but it was and so was Mobic. I have ran into medical publications mentioning T Cells4  and TNF-alpha 5 but I do not know what either mean other then I have seen them mentioned in medical documents related to Rheumatoid Arthritis as well. Continue reading

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Faces of Juicing Book

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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