breathing issues

Multivitamins & Biotin for Biotinidase Deficiency

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.

photo of a bottle of Biotin liquid capsules by Nature Made

Biotin liquid capsules by Nature Made

 

Biotin Supplements

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?

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Working Out, Going Uphill, Breathing and Health Activist Nomination

Working Out Again

In November I signed up at the local gym so I could start working out again on the elliptical, it has been awhile and something I have really missed. November 15th was my first day back on an elliptical.  I felt like it may cause issues with my shoulders or neck later on since my shoulders and neck has been where the strongest pain and stiffness are and the damage in my neck. I was surprised to find that my right hip was giving me the greatest pain but I was able to keep going. I did feel some pain all evening and thought I might have over done it. The second day the hip pain was gone but returned during the first 10 minutes of my workout then it went away after it warmed up and did not come back after the workout. It seems the days I am working out consecutive I do have less pain and stiffness and the days I skip I have a greater chance of feeling some stiffness. Usually more on my right side, shoulder, hip, knee, ankle and foot lately.

I have also learned not to place my hands on the heart monitor grips right in front of me; it caused a strong fluttering in my back of my neck. But I can use the handles that move to workout my shoulders or put them on the outside curves of the monitor grips.  During my first remission I would go to the gym with my sister. She could go forward and backwards on the elliptical and I found I could only go forward, going backwards made my knees hurt so I just kept going forward. Rheumatoid Arthritis can make it hard, you never know when something is going to cause you pain later and sometimes all you can do is keep trying. Sometimes it is hard to know when to give it up; it is something I have issues with. I found this great motivational video being posted on Facebook the last few weeks, “They Were Wrong” and it is how I feel, when I am bitching and screaming on this blog that is because I have a hard time accepting that living with this disease is okay, it is not. I accept that I have it, I have had it for a long time, I just do not accept that it is okay and I am thankful for everyone who donates, promotes and works for Rheum4us.org to keep patients attending conferences, getting information about the disease to the media as well as supporting patients.

So I have tried to track working out by posting on Facebook how much time and miles I do on the days I go workout. I do not know that I remember every time but I try to track it that way. It has been 25 days since I joined the gym and I have went to the gym 14 days so far. I started out doing 2 miles in 30 minutes and I am up to doing 4 miles in 60 minutes. I have gone 39 miles and spent 10 hours and 30 minutes on the elliptical. I am hoping to strengthen muscles and lose some weight. I feel like my spine, shoulders and upper back are getting stronger, not perfect but I like the direction I am going. Continue reading

Struggles with Pain, Frustration & Cigarettes

Struggling with the pain and frustrations of living with Rheumatoid Arthritis I decided to smoke again. I watched my mother struggle with an addiction to cigarettes all her life. For many years she smoked three packs a day, I am not sure how she was able to handle it, maybe she wasn’t.

So I made it through four packs of cigarettes before I quit again. The first day of smoking cigarettes I had bad stomach aches and headaches. The second day the stomach aches were less but I still had headaches. The third and fourth day no headaches or stomach aches, but I just could not stand the smell or having the feeling of needing to have another. I noticed numbness in my feet starting earlier than usual, B-12 shots have helped stop that but it was not time for the shot yet so I guess the smoking was not helping. I also had increasing congestion and breathing issues each day.

I guess the good part was I was able to see what it was doing to me, enjoyed some frozen snickers bars and still lost 5 lbs in a few short days. Also it was good to see the mist rise off the car in the morning as the sun was rising, the birds flying around, animals crawling in the trees and a hummingbird flying above the front yard. Maybe I just need to find another reason to step outside and enjoy the scenery. I have had less pain and stiffness again since the Cimzia shots, a good thing since the SalonPas patches do start burning me after using them so often.

A reminder Rheumatoid Patient Foundation is sponsoring a contest to help spread awareness about Rheumatoid Arthritis. Find out more about how you can win a Pentax Camera on RA Warrior and for the entry rules. Also Eric from Bringing Me Back Home is hoping to raise $1500 for Rheumatoid Patient Foundation, please consider helping him in his goal by donating through Causes.com.

Another song on my music therapy list:

 

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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