It has been over eight months since I found out I had Biotinidase Deficiency and not Rheumatoid Arthritis. My health has still been improving each month. I am amazed at how much energy I have, sometimes I do not know what to do with it. I just started being able to sit at the computer again in January with slight pain and last month without any pain. If you have been sick for years and hardly able to stand and then was all of a sudden pain and fatigue free, I think you would have a hard time sitting around as well! Both the pain and the huge amount of energy kept me from sitting down at the computer. I baked as much as I could and kept track of how many hours I could stand on my feet without out pain. Then a few months ago I realized I could be on my feet all day without any pain. It is awesome!
Earlier this month we arrived home from Phoenix and the last hour of the ride in the car I cried because I could not believe I was not exhausted and had no pain. No hip pain, no foot pain, no shoulder pain, no knee pain and no neck pain. Then it rained that week and I cried again because it was raining and I did not feel any pain or fatigue at all. Then I realized that I cried twice that week without any pain; usually it caused extreme headaches or caused me problems when laying down flat at night. My shoulders are still weak; I am hoping to work them out a little somehow. Lloyd wanted to start doing some Tai Chi so we may start with that or some yoga.
Now I am ready to work and need to get to work. I have been extremely lucky to have sold so many web hosting clients before I was too sick. Income recently has dropped to an unacceptable level so right now I am trying to figure out what I am going to do. Do I want to stick with technologies? Do I want to rebuild the company? Should I just work for someone else? Should I get into baking full time? Should I go back to school and finish getting my Masters in Business Administration? I feel a little lost on what to do now, I have never in my life had this much energy so I don’t know if I want to sit at a computer all day anymore. But I have been in online technologies since 1998. Any suggestions?
Would a Multivitamin Give You Enough Biotin?
Biotinidase Deficiency is the cause of my profound vitamin B7 deficiency. I have been asked if taking a multivitamin would have kept the deficiency from happening and the answer is no. Most multivitamins do not even contain 100% of the daily recommended amount of biotin in it. The daily recommended amount to supplement with is 300 mcg and from what I have read patients with Biotinidase Deficiency are usually treated with 20 to 30 MG of biotin, some up to 100 MG1. That means I need a mega dose. From what I read the recommended daily amount is based on a healthy adult that can absorb vitamin B7 from nuts, eggs, produce and other foods they eat. Biotinidase Deficiency patients do not absorb biotin from most foods so they need a larger dose. Patients must supplement with a free form biotin. Biotin has to be free from the protein that it is normally bound to in foods. New vitamins, like the “whole food” type may not have free form biotin and it is very important for patients with Biotinidase Deficiency to have the free form biotin since we do not have the “active” Biotinidase enzyme that breaks the biotin from the protein so it can be absorbed.
I have found some issues with biotin supplements like above; it must be a free form for patients with Biotinidase Deficiency. I tried to start using a tablet form and found even when I was taking twice as much as the Nature Made liquid capsules it was not helping me at all. My body started to get stiff by the end of the day and after a few days the skin on my finger tips was getting really dry and cracked, so I switched back to the liquid capsules and I am doing well again. I have also tried to find a medical grade biotin but the pharmacists have just had a good chuckle, they do not see why anyone would need it. There are professional grades they would offer, but what does professional grade even mean? Currently I am sticking with Nature Made Biotin because I know it has been working for me. It is available sometimes on sale on Amazon or at Target. I have already had issues with Target being able to keep it in stock.
I have found FDA warnings to one lab2 in May 2013 for their biotin supplement only being 4-6% biotin and the rest of the product ingredients not being listed on the label. I have not found any list of the companies that lab sold the product to or what brand names it is currently being sold under. While searching about biotin I also found it being sold in bulk from China and they do sell feed grade biotin which is usually 4-5% biotin. Maybe that lab forgot to make sure they were getting medical grade biotin and not the feed grade3?