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?
Profound Biotinidase 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.
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
Living with a chronic disease is not easy. Having so many changes happen so fast is just as hard to deal with as the pain. I am still learning the new me and trying hard to pay attention to what is different now. It has been difficult to notice some of the symptoms I am left with since the pain died down, which seems to be nerve related. So I had my first visit to the neurologist in which I learned I will need to remove few items on my wish list because of neck damage, no sports, not even jumping in a pool. I also cannot wear a helmet.
I did however; get to check off a few items on my wish list. I went to visit with my family and a friend in Indiana, went to see Carl Palmer of Emerson, Lake and Palmer at Saint Rocke in Hermosa Beach, did the Unity Run in Pasadena and I am still walking daily. I did wear myself out in Indiana, I have difficulty pacing myself and other times I have difficulty staying on track. It is crazy. Even though most of the time it was good stress while getting to visit family, the length of the day was longer than my normal day at home.
I visited my sister for awhile I was in Indiana and she was doing well. But now she is in the hospital for the second time in the last two weeks and I spoke to her on the phone this morning. I wish I could be there to help her more, I know how difficult it is to deal with the changes, pain, anxiety and fatigue. Please pray for her full recovery.
During the last year of flaring, when I was missing being able to use my camera, I began playing with my food and making faces. Even in pain I would stand in the kitchen, choose the produce and create a face. I found it gave me some peace. Sometimes it is difficult to find peace while living with this disease and when you do find it, it disappears again. I used to enjoy using the camera all the time, the few seconds framing the shot and taking the photo made me feel at peace. Riding on the back of the Harley with Lloyd made me feel peace. When I began playing with my food and making faces I took a photo of each face and now it is a juicing recipe book called “Faces of Juicing“. In every photo sits the knife I used to cut up the fruits and vegetables, it may seems strange but since my mother lost the use of her hands first I thought I would take advantage of still being able to use those knives.
This past week I joined Team SarcASm of Walk Your A.S. Off, Lloyd is participating as well. This is an easy walk that anyone can join. If you are already doing walks daily you can track your steps and submit them to your team leader each week. The team leader will submit them to Walk Your A.S. Off, it is that simple. You can track your steps with a pedometer or calculate them as 2000 steps per mile. Lloyd and I each submitted 42,000 steps, so that makes 84,000 steps together this past week. If you want to join Team SarcASm let me know or contact Hurt Blogger, she is the team leader for Team SarcASm.
I also joined the Unity Run Pasadena on Sunday April 21st, 2013 for my first three mile walk, the furthest distance I have been during a walk since remission started a couple months ago. Doing some community or awareness walks is part of my “Remission Wish List“.
The Unity Run Pasadena gathering was in honor and support of those at Boston Marathon 2013 attack. The short notice and informal gathering was only successful because of the support of the community. Follow the Unity Run Facebook Page to see photos from the Pasadena event as well as other Unity Runs that take place worldwide. You can see all the photos of the Unity Run Pasadena at Got Baddog.
Before the Unity Run began there was a moment of silence in honor of those at the Boston Marathon 2013. Also there was someone playing Amazing Grace on the bagpipes right before the start. You can see the video on CNN; this was also my first time being vetted on CNN.
I am looking forward to more walking and I will continue to walk each day that I can.
This week I am another year older but I feel so much younger than the last couple years. I am not sure how long this will last but I think I will start making a “Bucket List” or “Wish List”; really it is my “Remission List”. What do I want to do while feeling good or before the next flare? I have a few ideas already, so here we go.
My Remission List