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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Healing, Learning and Ready for Work

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?

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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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

Changes Are Difficult

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.

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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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