Adult Biotinidase Deficiency and you

Tanya jumping

Jumping for Joy

To say that this has been an amazing week would be an understatement; I would go so far as to suggest that it has been a miraculous week. I would like you to take a look at the photo of Tanya, to the left. I took that photo this afternoon (Saturday, July 27); there is no way Tanya would have even attempted jumping up like that a week ago. The fact of the matter is that in recent weeks, Tanya has been extremely clumsy; tripping over her own feet and walking into walls became pretty standard occurrences. She had numbness in all of her extremities, it was painful for her to smile and she could not follow a conversation to save her life. On the 19th, my birthday, she got a telephone call from her primary care physician’s office and they informed her that she had a low B7 reading and that the doctor would be calling her with a treatment plan. So, that was a week ago and her doctor had something to do and would look into it when she got back. Luckily, Tanya had figured out that waiting for this doctor could kill her, so she went and got loaded up on B7 the next day and has kept at it since.

Since the primary care physician was pretty useless Tanya hunted down a doctor that practices naturopathy; figuring he would be more capable with vitamin deficiencies. She then picked up a copy of the test results so she could bring them to the new guy and discovered her B7 level was .05! People with B7 levels between .30 and .10 need treatment; below that is a profound deficiency and must be treated with urgency. While Tanya waited for her appointment, she did more research and discovered that almost every issue she has had since birth can be related to this B7 deficiency. In the 9 years she had been treated for Rheumatoid Arthritis (RA), no one ever suggested doing a vitamin test even though all the tests they ran on her said she did not have RA. Doctors agreed, something else was going on, but no one ever thought to check vitamin or toxin levels.

Thursday we went to visit the naturopathic doctor; that was pretty eye-opening. The first thing we learned was that he had never dealt with anyone that had a B7 deficiency; he had just had someone with a B6 deficiency recently though. B7 deficiencies are not tracked much it seems; they do it on newborns, but stop after that. Not really sure why that it. He agreed to do a complete vitamin and mineral blood test, so we will see what happens from there.

We also learned that there is a name for this disease, it is Biotinidase Deficiency. They say 1:60,000 babies are born with it and 1:130,000 are profoundly deficient. There is not much data on adults because there is no money in curing people with vitamins when you can have them spend $50,000 a year (or more) for life. Tanya knows it is in her family bloodline and she has two sisters diagnosed with RA and a mother that died from it. What if it was not RA, but adult Biotinidase Deficiency instead?

There are too many things I need and want to say to put into one article, so I will make it a series and keep you posted on Tanya’s progress. I have to say, this last week has been pretty amazing. It is like living with a 10 year old; Tanya cannot stop from smiling; now she bounces off walls because she is so excited and happy to be pain free. Research has told her that Biotinidase Deficiency could be the cause of her food allergies; she cannot wait to try an avocado again. Her skin feels moister, her mouth salivates on its own; things we take for granted she is just now appreciating for the first time. Oh, and she has completely stopped taking all the RA meds she used to take on a daily basis. Even the ever important Cimzia, that costs $2,200 a dose, she did not take it. She is just taking B7 seven times a day.

Here is the most important part of this article, and I cannot stress it enough, if you or someone you love is being treated for a chronic illness get a vitamin, mineral and toxin test. In 9 years Tanya took about $500,000 in drugs, it appears she can now get away with paying a few dollars for some vitamins. All I can say is you have nothing to lose, and everything to gain. Stay tuned.

One more thing, now that Tanya can think again she can write again. You can read her version of the last week on TanyaMartin.com. If you have ever read her blog, you will notice the difference, just in her style.

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