Topic: extreme B12 issues- genetics- and how to find the right dr to treat
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Auto immune diseorders can really mess up your B12 , and my genetic testing revealed that I have very tough situatio nthat doesn't get me B12 and I am experiencing great medicall issues because of this. I see a gene person now who is very good, but isn't helping me enough in this area.
anyone know of anyone in the north eastern states that can help????? (I am in PA near new jersey and new york)
OR know any other info that may help on this? like, how to get your present dr to smarten up and listen?????? US levels for B12 are way too low for normal. I am really having a rough time with this.
this site has tons of info and the most complete I have found:
Developmental delay or regression Apathy—Irritability Hypotonia Weakness Tremor Involuntary movements Seizures Ataxia Anorexia Failure to thrive Poor weight gain Poor head growth Poor socialization Poor motor skills Language delay Speech problems Lower IQ—Mental retardation Anemia Macrocytosis
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
I suggest you make a post in Seeking for a doctor.
I sent you a PM about Vit B12 and I think I'll repeat the summary here.
I just watched two webinars this weekend. Recommendations for boosting Vit B12 include taking daily scoops of spirulina - said it's very high in Vit B12, good for the nerves.
2nd, to take probiotics, which help make Vit B12 in the intestines. Get a mix of soil-based and food-based organisms, so make sure your yogurt has a lot of cultures in it.
Add a lot of fermented foods to your diet, like sauerkraut and kim chee. Drink kombucha and kefir; they recommended goat's milk kefir in particular.
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks. I can't eat any dairy like that and I do take a ton of probiotics.
cant eat cabbage either.
Lymetoo, I hope you are right- I actually finally get insurance next month! yay. my husband getting a new job. and I will be hoping to find a real llmd. and I hope the wait isn't too long for me to get the help of one that is capable, but until then.... some days I have truly I wish was the last day of my life becasue they are so bad.
I wish so bad that I could just figure out the reason one minute I feel ok and the next I am on deaths door?
I am trying to do a food type study on myself, but that is hard.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
The gut seminar starts tomorrow - I've posted about it in General. I suggest you listen to everyone re their explanations for everything and then decide what you might be able to start trying to do. It will be up to you, of course.
Posts: 13171 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks Robin. yes.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I signed up for the page on facebook for Pernicious Anemia / B12 Deficiency . lots of good info there.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Sent you a PM yesterday with the name of a good LL Immunologist in CT, if you can travel.
Posts: 9020 | From Illinois | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ok hoping. thanks.
yes, the more I read the more I see how serum levels dont' give a true picture and I have so many sx.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Exactly, Lisa. My serum level was fery high, but a methylmalonic acid (MMA) blood or urine test can give a good picture of functional B12 issues. Up to as much as 80% of your serum B12 may be inactive .
I like the range of B12 oils from B12oils.com , a small Australian company run by a very smart research biochemist who specialses in topical delivery of meds. Some of my worst B12 deficiency symptoms improved within 2 or 3 weeks of my starting the adenosyl/methyl oil. Severe B12 deficiency takes a while to improve. I hope that my next MMA test will indicate a clear improvement. I was waiting to see my next results before mentioning them on here, but perhaps they are somethng for you to consider. There are threads discussing these oils on Phoenix Rising.
Posts: 1647 | From UK | Registered: Nov 2008
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LisaK
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Member # 41384
posted
ukcarry, thank you! this sounds great. Is MMA available in the states? no dr has ever mentioned that to me.
my ND/gene dr just told me today he wants me to take a homeopathic B12 tincture., a entera coated adenosyl pill (already taking this), and a disolvable lozenge. He said shots wouldn't work on me.
I am hoping this helps me aand that he knows what he is talking about.
I like the idea of topical. I like my magnesium that way.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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ukcarry
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Member # 18147
posted
I don't know whether your normal doctor can test for MMA in USA, but you could get a dood idea of your MMA levels if you did a ONE test by Genova or I think Great Plains do one too. It is a urine test that is a useful way of seeing what is happening with your nutritional status.
If you wanted to ask the B12 oils' formulator more about your situation and the oils, he is very helpful and generous with his time.
Posts: 1647 | From UK | Registered: Nov 2008
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LisaK
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Member # 41384
posted
that is a good idea ukcarry. to test nutritional status. but does that really show true levels of things??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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WPinVA
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Member # 33581
posted
There is also the NutraEval test
Posts: 1737 | From Virginia | Registered: Aug 2011
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ukcarry
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Member # 18147
posted
Yes, Lisa, as a urine test, it is better than most serum tests because it is based on what your body has/has not metabolised. As I said, I think Great Plains do one too and the Nutreval that WPinVA mentions, is also supposed to be very good.
The person I am consulting with over genetics uses these tests along with your 23andme results and your symptoms/history to spot pathways that aren't working and to judge which of your genetic mutations are actually expressing. She has spotted, for example, that I have a problem with converting sulphites to sulphates and also picked up the pyroluria/hpu/kpu.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
Check lithium. Hair elements or urine analysis can test for this. Dr Yasko explains in her materials (mostly free online, if you have enough cognitive function to plow through it all, erg!) that many Lyme patients are extremely low in lithium.
Lithium is needed to escort B12 into your cells, so no matter how much B12 you might be taking, it may not be helping if your lithium is dramatically low. And increasing your lithium level is a delicate issue, too quick and you get bad detox reactions.
Also, what type of B12 works best for you is determined by genetics. Methyl works great for some, not appropriate for others. You can do genetics testing through her program, or if you already have that info from another source, she has a free service where you can plug that data in and get feedback.
I am still waiting for my initial test results, so I don't know my status. I do know that the methylcobalomin injections I took for a long time helped at first and then stopped helping. I now think this was the wrong track to take. Starting the Yasko program, and am taking very low dose of their foundation supplements which include a tiny amount of lithium, and WHOA, do I get detox symptoms if I push it too fast. Yikes.
In other words, maybe we have to look behind the B12 issues to solve them.
Posts: 261 | From Nebraska | Registered: Jan 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks all!
SILIA, lithium. interesting! now that you say that, I am getting a sort of brain flash that maybe someone told me this before? but my gene guy told me I can't take shots of B12- I forGet why. he said "shots wont work on you"
and i am no longer his customer SO i CAN'T ASK(long story). and he also had me on all the different B12s in varied forms. IDK if any of it helped as I had/have so many issues
how would I know??
maybe I need a new genetic person??? the past one said i have a very complex case of the B12 thing. i wish i knew what he was talkoing about
Have you gotten your resolts? what are you doing now?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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Marz
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Member # 3446
posted
I haven't read all the posts Lisa, but about the shots.
My LLMD didn't test, but just suspected and rxd compounded b12 shots for me a while back and I did them for a year.
Many months after stopping, my pimary care tested, I was abnormally high and she was shocked.She said the dose I was getting was tiny, and also, I had been off of them for a few months then.
I think it's an overmethylation issue in how my body handles methyl groups.(?)
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ukcarry
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Member # 18147
posted
I think abnormally high B12 is a genetic issue primarily: I have it too. Quite a number of people with chronic fatigue have it. The very high serum doesn't mean that you are absorbing the B12 into the cell and much of it is only accessible to the liver apparently. Consequently, the serum blood test is useless.
Posts: 1647 | From UK | Registered: Nov 2008
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