B-12 - The Hidden Story

[Jaz]

Crux
you have no idea how much i appreciate the fact that you have been patiently answering all my questions. I've been feeling helpless and extremely depressed for the past 2 months (lots of visits to my therapist). I was told it was my Vit D deficiency but not all my symptoms fit and i haven't improved anyway so i just ended up questioning my blood-work. I've been going downhill with no improvements so even the slightest improvement will give me so much hope.

 

[pela]

Jaz,

I was deficient in Vit D, iron, B12 and folate, and probably everything else. I also found I needed zinc right away as well as potassium when I started on methyl B12. Are you taking the basics? A, D, C, E, magnesium, calcium?

This is a link to a talk by Rich V. If you have time, it may help explain a lot of things:
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

 

[Crux]

Jaz

You're welcome, Jaz. I really don't like to see people suffer, and being able to converse with folks here is very helpful to me too. I'm not sure I realize the degree I've been helped here. It's great.

I don't understand why therapists, psychiatrists, and all docs are so uninformed about B12 def. Is it unfashionable, or unprofitable? I'm cynical. I've seen a number of them, and tried many antidepressants. I understand that they do help many, but I was not one who benefited.

There are other physiological causes for depression, anxiety, cognitive dysfunction, and more, but B12 deficiency is a major one. There are many case reports about people who have suffered this, and some of their behaviors have been described along with blood test results. Their behaviors are familiar to my own.

I realize that it is not a cure-all miracle, ( though sometimes it feels that way), but it's been the most effective substance I've tried for recovery.

 

[pela]

Crux you said it--doctors are uninformed. It took me years to figure out all by myself that I am gluten intolerant, and 5 more years after that to figure out I had a severe B12 deficiency. I finally figured out the B12 thing after reading Chris Kresser's website and finding Freddd's comments on Chris's B12 article. No thanks to the many doctors I've seen.

 

[adreno]

Crux you said it--doctors are uninformed.

Amen.

 

[Jaz]

Crux

Hi !! i'm so sorry for bothering you AGAIN...
i have a quick questions...would you say based on my symptoms that i should be worried about mercury poisoning??
i have 3 teeth that have been repaired...2 had root canal done to them a long time ago. it seems like that you can also get numbness from Mercury poisoning.

 

[Crux]

Jaz

Hi Jaz, It's really not at all a bother, although you may find my limitations before I do! There are many folks here who have tried chelation therapies with various results. Many folks have had amalgam fillings removed by experts with good to excellent results. I still have some amalgam fillings, and I dread the thought of the dentist's chair. I've been exposed to heavy metals more than most, but I've only taken some gentler efforts to deal with toxicity. (Some herbs and supplements.)

There are other dangers to the nervous system that are worth concern too. Some gases, especially nitrous oxide, an anesthetic used by dentists, et al., can destroy B12, and sometimes the symptoms won't show up for more than a month. This can be difficult to trace back. I've read that freon, CO, and other gases can also trash B12.

I can sit here and freak myself out about these exposures until I become catatonic, but it doesn't seem to help, so I trust being careful with diet and exposure to obvious toxins. I tend to tip over easily when I try a strong treatment anyway.

At this time, I think you may need to be gentle with yourself, to become stronger before considering other treatments. (humble opinion)

 

[Jaz]

Crux
Yeah you are right...i've been freaking all day over the fact that walking is getting really hard for me due to my numb legs and it's really hard for me to deal with that. I've never been so scared in my entire life...and the depression is getting worse and getting the best of me thinking what if it's not B12...but then again i haven't even received my vitamins yet.
So i'm really not being logical at this point. It was just something i saw people talking about

 

[Crux]

Jaz,

I meant to bring this up before, but do you have a good source for B12 injections? Many people do much better with them, either alone or combined with subs. Also, is there a natural store nearby that may have a good brand for you to start right away?

I didn't realize that you are waiting for a delivery...Maybe you have some with you now? I hope so.

 

[Jaz]

Crux
Yes...i ordered Mb12 and the rest of the supplements only 5 days ago. And i'm progressively getting weaker and my emotional state is a mess and has left me unable to literally do anything beside panicking all day. It has been a consistent downhill so sometimes i start doubting everything and the vicious cycle continues. And i can't get proper injections, convincing the doctors will take a while and i doubt that they give Methyl injections tbh.
I only found Cyanocobalamin pills in the pharamecy and i wasnt sure if i should take it.

 

[Crux]

Jaz
Are the Cyano pills sublingual? Years ago, I started with cyano subs. I think I was able to convert it to Mb12 and Adb12, because I remember feeling better at the time. Of course, I don't care for the cyanide now, and I don't seem to be efficient with the conversion, but that's all I knew of back then.

B12 has been used as an antidote to cyanide poisoning, and the amount of it in the B12 compound is small. It may be worth it to try to get some anyway, for peace of mind. Or, you may not like my suggestion of having a nicely sauteed portion of liver and onions. ( I love it, but husband doesn't )

Shellfish is very high in B12: oysters, clams. Again, I'm probably suggesting something that sounds yucky.
I wish we were neighbors just now... I would run some right over!

 

[Jaz]

Crux

Yeah they are sublingual and i thought well i might as well wait for the Mb12 few more days and get the right effect. I feel so hopeless that if i get improvement from them it will feel like a miracle at this point. I've dealt with depression for so long but it has never been this bad.
You sound like an amazing neighbor...wish i could meet you in real life. I'm so glad i've found this forum..it really feels like my last hope. My doctor said that my case also sounded too scattered to be anything else but Vit deficiency. I just want to have more strength and have less numbness.

 

[Crux]

Jaz

The standard protocol for a diagnosed B12 deficiency is to give the patient loading doses ( injections) for a time, then reduce to a maintenance dose after no improvement is seen. Procedures vary, but it often involves daily injections for a week, weekly injections for a month, and monthly injections there after. Doctors should be informed of this.

It may be a good idea to create one's own loading doses with higher amounts of MB12 at first, then level off to a daily maintenance dose.

I agree that Enzymatic Therapy brand is very effective, but each sublingual is 1 mg. Jarrow's brand Methyl B12 isn't as potent as it used to be, so a higher dosage may be needed.

Another brand that I take is AOR, methylcobalamin. It comes in dosages of either 5mg. or 15mg. I take one15 mg. sublingual daily now.

http://www.nationalnutrition.ca/SearchResult.aspx?KeyWords=aor methylcobalamin&All=True

Please have an easy, restful, and non-stressful weekend until you receive your shipment. My best to you!

 

[lucyhem]

Hi Cruz and others,
I would like to join this conversation about B12 deficiency and neuropathies. I have been dealing with so many symptoms over years, including fatigue, insomnia, memory loss, difficulty concentrating etc that I have not paid a lot of attention to this gradually growing and spreading pain that sounds like yours. It started with burning in the bottoms of my feet at night, now it is feet, hands, calves and other parts of my body, migrating around like you described. As someone who once practiced yoga diligently and who loves to dance and move, this is devastating. If I try to stretch it gets worse. I am glad I am getting closer to understanding it, but this is my dilemma.:
I did Rich's modified protocol for a year and my levels of b vitamins did not go up. I got my test results back two weeks before Rich died last fall so I never got to ask him about them. I was so discouraged about the test results and deeply saddened by his unexpectied loss that I quit the protocol and left the forum. I am just coming back now to restart.
I tested my levels w Geneva's Metabolic Analysis before starting the protocol to get a baseline. They actually all went DOWN slightly. I used the sublingual B12 drops from Lasko. The Enzymatic Therapy ones make me feel weird and a little anxious. Does that mean they are working, or might I be sensitive to some of the fillers? What does that indicate? Methyl B12 shots don't seem to do much for me. Maybe I should try them again. I am trying to tease it all apart and figure out why my levels of B12 would not increase w sublingual. I know I need some gut healing so that explains why the other B's including methylfolate did not go up. RIght now I am on a low dose SSRI that seems to reduce the pain about 80% so I hope I will notice when the methyl B's start working.
I want to address this B12/methylfolate thing because I believe it will make a difference. How to start absorbing B12 and how will i know?

thank you,
Lucy

 

[Crux]

lucyhem;

Hi Lucy, Freddd has written that if the Methyl B12 injectables are not 'fresh', or have been exposed to light, they may convert to hydroxocabalamin.

Some people, as Freddd, are unable to convert HB12 to MB12. I'm not sure if this is true in your case, but it's surely possible.
Even though the Enzymatic Therapy has sweeteners, etc. that are problematic for some, I wonder if you may have had the 'start up' effect Freddd described. Feeling weird and anxious could be a start up effect.

I would guess that you may need the active forms of the B's, and that MB12 is really important for the neuropathy.

I hope you won't give up again, being able to dance and do yoga again would be great reasons, but, not losing the ability to feel, walk, remember, etc., are crucial too.

 

[EastWest]

I think it is really important to read here extensively and understand the start up effects because it is not intuitive. I mean, feeling worse when you are actually improving...

I took MB12 injections for 4 years at 2.5 mg twice weekly without noticing any benefit. But once I started folate, and particularly got the folate dosage up higher, I noticed an immediate energizing effect from my shots. It could be described as weird and anxious. Typically with a dosage increase or starting a crucial co-factor, I have a few days of feeling wired and excited, then a period with a lot of fatigue. Also my need for potassium goes WAY up, and typical low potassium symptoms for me are fatigue, weakness, shakiness.

 

[lucyhem]

EastWest, Thanks for the encouragement. I will give it another try. How high did you get your folate up? My initial response to Deplin was at 7 mg or it might have been 15mg, but then it stopped working after one week. My psychiatric prescriber thinks i need to get the folate way up, but I dont think she understands the complexity of the methylation issue. So maybe I do need to build it up gradually to a high dose. First I have to heal my gut enough so I am absorbing it at all. As I said, after a year on the protocol my levels of most B vitamins went DOWN including B12 and folate.
Has anyone tried injecting folate? My pharmacy does not have the methyl form. So would that make sense to inject any other form?
Lucy

 

[lucyhem]

Has anyone tried the B12 or methylfolate from Ben Lynch's on-line store called Seeking Health. I have listened to his talk on MTHFR and looked at his website, He seems to really get it. Anyone have any experience with him? He is not taking new clients unfortunately.
Lucy

 

[EastWest]

Lucy if you tolerated the 15 mg of folate without strong start up symptoms, then what I would do is keep taking it and then try adding or upping the active B12s. You also might need carnitine or one of the other co-factors before things "turn on."

 

[Jaz]

Hi Crux

sorry that i keep bothering you, you are the only person who has actually responded to me here so i really appreciate your input.
since the last time i talked to you i have started the Methyl b12 (i'm taking Jarrow 1mg , 5 x per day) cause i thought i might just take it since i payed for it despite that it's not the best brand anymore.
Since i started taking it i got this tingling all over my body (from head to toe) which comes and goes and intensifies at some parts of the day, also when i'm resting specially at nights my knee and lower legs start pulsating as if my heart is beating there. I do get random muscle spasms as well. So even-though Jarrow may not be the best brand i'm assuming it is doing something at least. I don't feel more energetic at all though...i guess my reactions confirm that i AM deficient in B12 considering that if you are not deficient you aren't supposed to react at all.

I still haven't recieved my adb12 and potassium yet and just ordered a lot more of they Enzymatic fusion cause there is only 30 in a bottle and if i wanna take large doses that won't do. i was wondering about a few things.
- would it be smart to mix brands of Mb12 ? if i continue taking Jarrow and also Enzymatic Fusion?
- Since the last time we talked my numbness has spread to my buttocks and trunk...do you think it takes a lot of time for the numbness to subside?
- i have heard a lot of people saying to take Mb12 on empty stomach, yet on the protocol it says to spread it throughout the day. Do you wait a certain amount of time before taking ur mb12 ?
- i am raising my Mb12 dosage however i am wondering...when do you feel that it is the right dosage for you? do i have to raise it until i get stronger reactions ?

Thanx again in advance