Do you have a chronic disease or know someone that does?
 

If you are suffering with a chronic disease or knows someone who is, this may be the most important thread you ever read. A little back story.

9 years ago goodgirl was diagnosed with Rheumatoid Arthritis; it is a very fucked up disease. Those of you that have met her probably noticed how quiet she was. There was too much pain for her to concentrate on a conversation. She could not stand around and talk because she had to keep moving to ease the pain in her feet. Two months ago her sister's kid had a baby. These days they test newborns for genetic deficiencies, they discovered a mutated gene and they did not know what side of the family it came from. The mutation can cause a dangerous vitamin deficiency that can have serious effects. goodgirl decided to get a B7 test run on her. After two months and two tests they determined that she had a profound deficiency, otherwise known as Biotinidase Deficiency.

So little is known about the disease that her primary care physician did not know what to do, but she had a vacation scheduled, so she left town. goodgirl found a clinic that would give her a B7/B12 injection, then went to the store and bought some B7 capsules. That was Saturday the 20th of July. On Sunday she stopped taking the multitude of pills that she has taken every day for the last 9 years. It has been a week now and I can not believe the difference. It is like I am with someone new.

There is far too much information for me to deliver in one post or article on my blog, so there will be a series written. I advise anyone that has been diagnosed with any disease to get a vitamin and mineral blood test done immediately. It could change or save your life. It did hers.

If you want to follow the story or pass it along, you can find it at http://www.gotbaddog.com/adult-biotinidase-deficiency/


http://www.gotbaddog.com/wp-content/...nfree_5865.jpg

Fucking kudos to you Lloyd. You and your lady are doing God's work. :2 cents:

Glad she's feeling better after stopping the medication. Dr.'s like to pump ya full of shit like a guinea pig. The VA Dr.'s did the same to me - not for what goodgirl has, it's for something else. Hope things go smooth as silk for her ! :thumbsup

Its amazing how many times we find simple solutions to problems that we think are complicated.

Thanks for the story and advice.

Awesome story, and congrats GoodGirl.

Nice!!!, also fresh Royal Jelly does wonders. Most likely she benefited most from the injections rather than the pills.

Pain free and so simple at the same time. How wonderful for her.

Biotinidase is caused by the body missing an enzyme that allows proteins from separating from B7 which prevented her body from being able to properly absorb fats, proteins, carbs and B7 (and other B vitamins) properly. In other words, her body can not pull B7 from natural sources, like all the juicing she has been doing.

As far as the B7 shot; it was mixed with B12 and there is only like 1 mg in the injection; she has been taking 50 mgs a day; it is the pills for sure.

:1orglaugh :1orglaugh :1orglaugh

That's awesome, glad to hear she's doing better and pain free. Can't imagine what she has been going through but wish her the best!

Where did she get this test done? I'm guessing at an endorchronolgists office?

Wow. Well, my sister has MS, afraid it won't be that wasy for her. :-(

This is awesome news to hear !!

Something funny about sick children?

what??? we don't work for god :evil-laug more of a warmer climate

My wife has suffered from RA all her life. Doctors told her when she was a child that she'd never walk or lead a normal life.

She proved them wrong over the years with sheer determination and force of will.

But these days she's been going through a littany of treatments to keep the arthritis away from her organs. From methotrexate to plaquinil infusions...in the next few weeks she starts infusion treatments with remicaid. The cost is staggering - over $4k per infusion and her program starts with several infusions in rapid succession...over $10k to get things underway.

We're hoping the side effects aren't worse than the RA progression.

Baddog - good to hear about Goodgirl's improvements. RA is a brutal disease - one we both live with on a daily basis.

Go pay your fake $1500 electric bill, with your fake checkbook, Toby

Your primary physician should be able to do it; we went to a naturopathic doctor for the last test she had Thursday.

The thing is Rob, we thought goodgirl had something different than what she was diagnosed with; a lot of symptoms that seemed to coincide with RA or Crohn's are very similar to a B7 deficiency. There is no way I would not spend the $200 (or less) to find out. Even if it does not cure MS, it could alleviate some symptoms. Like I said, I have far too much info to write in one post, and I am still learning; but a vitamin and mineral test is something Obama should force insurance companies to do if they are going to force people to get health insurance.

pretty much. good info, bd! :thumbsup

i've been getting my b12 via vitamin IV in combination with hydrogen pyroxide. it takes about 45 minutes each, i am very happy with the results. i then hop in the hyperbaric chamber for an hour to jam all those nutrients into my system.

i also picked up the guitar to aerobicize the fingers in my hands.

Please do yourself a favor and get a vitamin deficiency test done, she has nothing to lose and everything to gain. goodgirl has had so many fucked up drugs put in her system and the side effects of what your wife is about to endure are pretty bad; especially when it could be something as simple as a vitamin deficiency.

Remember, with Biotinidase, the enzyme prevents the body from absorbing what it needs. B12 helped, but the B7 deficiency prevented it from truly getting in her system. The juicing she has been doing for the past 18 months probably saved her life, but it could not give her all the benefits it could. Now she actually feels the benefits as she drinks her juice. She cannot believe the difference. She bounces off the walls and is constantly smiling and shaking her head in amazement.

She actually gets the vitamin deficiency tests done on a fairly regular basis - and takes B12 supplemental shots. Unlike Goodgirl - its definitely RA and not a misdiagnosis of vitamin deficiency. She's had it all her life. She's currently a patient of one of the leading RA doctors in Canada - we're at least a bit fortunate in that respect.

I'm genuinely happy for you guys - and although the original diagnosis was obviously wrong...glad it was discovered to be a misdiagnosis with a comparatively easy fix.

oddly enough cherry juice helps too... started drinking the stuff, very concentrated... help my arthritis..

my wife has fibromyalgia... She had all kind of bloodworks, allergytests, x-rays,... done over the years. They found a multitude of things wrong with her, but none of those things explain why she has so much pain...

The only thing she can do is to take NSAIDs, and combine them with morphine. It's the only thing that keeps her on her feet...

i have ashma :(

Cherry juice concentrate works on mild forms of garden-variety arthritis - but not rheumatoid arthritis.

I'm happy to hear she is doing so much better.

Thats great to hear and awesome that you are sharing the info.. My mom has Huntington's disease and b vitamin shots help with her symptoms. Its not curable at the moment but every little bit helps.

Again, her disease does not allow the proteins to separate so the B vitamins can be properly absorbed.

Fibromyalgia is one of those diseases that have symptoms the same as a Biotinidase Deficiency; goodgirl was having nerve conduction studies done a couple weeks ago because they thought she might have fibromyalgia. Turns out, it was a vitamin deficiency. Believe me, goodgirl was taking a ton of shit to deal with the pain and none of it worked all that well; I strongly advise your wife have a vitamin deficiency test done, at least test B6 and B7 levels if nothing else.

We just had a friend contact us that she had a full vitamin blood test done a year ago, oddly enough, B7 was not tested. Do yourself a favor and check.

I'm glad she's getting better! Rheumatoid Arthritis can be caused by vaccines :2 cents:

Save it for your weekly CT meeting. :2 cents:

My sister had fibromyalgia pretty bad - i will show her this and urge her to at least get tested for this vitamin deficiency.

Doctors are arrogant, the truth is that for the majority of serious diseases they don't have effective treatments nevermind cures and don't even know the causes of most diseases and disorders as of yet they have the attitude that they are great healers and scientists.

on the positive side, we are on the verge of a great leap forward in medicine thanks to technology, where cures not 'treatments' will be possible.

One of goodgirl's relatives was recently diagnosed with RA and was told that her insurance was not going to cover it; now she has an affordable option.

She has pretty good insurance, and while they will gladly pay thousands and thousands on drugs, they will not spend $.01 on vitamins or a doctor that doesn't deal with drugs.

Weird.

This is Fact not Theory, pharma want you on their pills for life, that's how they make money, this is what the vaccine game is all about, don't believe the propaganda/marketing that goes with it, they want you sick. :2 cents:

3 Suits Say Lyme Vaccine Caused Severe Arthritis

http://www.nytimes.com/2000/06/13/sc...arthritis.html


"Multiple scientific articles have documented that vaccinations for influenza, MMR, and HBV, to name a few, could be triggers of RA in genetically predisposed individuals."

http://www.hindawi.com/crim/rheumatology/2012/785028/


"The committee found that the evidence is consistent with a causal relation between the RA 27/3 rubella vaccine strain and chronic arthritis in adult women"

http://www.ncbi.nlm.nih.gov/pubmed/1520764

"could be triggers" means maybe, not a fact. :2 cents:

FYI: Rheumatoid Arthritis IS NOT Arthritis

Are there blood tests and scans etc that confirm that a person has Rheumatoid Arthritis? Or is it a disease like Fibromyalgia where the diagnosis is predominatly made based on the symptoms the patient describes?

Do you think goodgirl has been misdiagnosed with RA or do you think she has RA and this biotinidase deficiency and while the vitamins are making her feel much better she still has RA?

Some of these treatments are incredibly cost-prohibitive, too. As mentioned above, the remicaid program my wife was just approved for is over $4000 per infusion treatment. Thankfully we have medical benefits through her company that cover almost all of it...but we're among the lucky ones.

$4 grand - bloody hell. That's just insane. :Oh crap

And the side effects can be wicked. Doctors discovered on her previous medication that it was causing 'retinal toxicity' which could potentially lead to permanent blindness. It only happens in 5% of patients on that particular drug - but thankfully they caught it early with her and we've discontinued that infusion drug.

Great healers and scientists? Sometimes I really wonder. More like distributors for the mega pharmaceutical companies.

Here's a good link that pretty much spells out the steps for diagnosing RA:

http://www.webmd.com/rheumatoid-arth.../diagnosing-ra

If you get bored, or know someone that is in a relationship with someone that has RA, you can read my observations at http://www.gotbaddog.com/category/rad-caregiver/

The fact is, there are tests that can diagnose RA, but they are relatively new and who knows how accurate they are? The thing is goodgirl (Tanya) had been tested for 9 years and they always came up negative for RA; however, she displayed the symptoms and since her mother and older sister had both been diagnosed (the sister tested positive for RA), her doctor assumed that was her problem too. $500,000 later, we learn that it may have been a vitamin deficiency all along. It makes us wonder, did her mother die needlessly? Was her sister in the hospital for the past two weeks because of complications brought on by this deficiency? Hard to say, but you can be sure, we are not done exploring and educating.

good read, stories like this make a boring day beautiful, I am happy for you and her

Hope it works
 

Baddog,

I hope it works and is a long term solution. Having RA for 30+ years, I've tried various remedies. Seems they work for awhile, then quit.
I'll look into this more and possibly give it a try.

Thanks

How is the diagnosis confirmed?

The diagnosis of biotinidase deficiency can be confirmed by testing a blood sample to determine the biotinidase enzyme activity level. Genetic testing to look for mutations in the BTD gene may also assist in confirming the diagnosis. Diagnostic testing is arranged by specialists at your regional treatment centre.

Has goodgirl had the blood test for biotinidase enzyme activity yet?

This is a genetic disorder that is screened for at birth but the symptoms can show up later in life.

Solid advice, nice to hear GG is feeling better. :thumbsup

Like many diseases the diagnosis is made from symptoms/observations. And I bet there is no known cause for RA, just a bunch of theories that haven't been confirmed.

My dad died of colon cancer, all they had for him after surgery didn't stop it is a drug that is from the 1950's or 60's that can add a little time to somebody's life, at most 2 years. Occassionally I google to see if there have been advancements since he died and there's nothing really, same dismal prognosis for people. Their big advancement is early detection by getting people screened and scoped regularly - which is smart but come on, that's no advancement.

If the world of technology moved at the same pace medical science does we'd be lucky to be online with IBM286 computers and 24 baud modems and cellphones the size of shoeboxes.

We are seeking a place to have a gene test done now. I am hoping my connections at 23andme can help. Will call them tomorrow.

You can read Tanya's version of the past week at http://www.tanyamartin.com/profound-...se-deficiency/

Pretty much, that's it, unfortunately. In my wife's case, her symptoms are quite obvious (these days) with the fluid buildup and joint inflammation and degeneration. To watch the pain she's in when she walks just breaks my heart. But her determination to not let it get the best of her just blows my mind and leaves me in awe of her on a daily basis. Lesser people would've thrown in the towel and ended up bed-ridden.

I read and hear stories like that all the time - and can't help but give thought to the theory that cures aren't profitable so why bother researching advancements. The medical community would vehemently deny that, of course.

Fully agreed.

Just skimmed a lot of the thread but I'm glad to hear she's doing well with the B vitamins. It's one of those deals where modern medicine often is great at treating only symptoms, but when you figure it out it's as if it was a no-brainer the whole time.

very cool stuff. glad she is feeling better

Anyway this is great for Tanya because she's got this deficiency - it's a rare defect so for the vast majority of people with RA this won't help. But definitely worth getting the word out because while it's rare, even .05% of RA and fibromyalgia sufferers adds up to thousands of people worldwide who might be helped greatly.