NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   b12- Methylcolbalmin vs cayno? (https://www.neurotalk.org/myasthenia-gravis/205895-b12-methylcolbalmin-vs-cayno.html)

bny806 06-21-2014 03:15 AM

b12- Methylcolbalmin vs cayno?
 
I know we have talked about b12 deficiency here before, and mine was found to be low.. My Dr set up B12 injections, but the pharmacist said they not only dont' have the methyl form, but that he had never heard of that (which made me a little concerned).. Anyhow.. I went ahead and picked up the cyano version.. I feel bad calling and arguing with the Dr's office again (I feel like it's been a little difficult to get the injections set up - as they usually do oral or nasal form apparently). Will the Cyano version help and not hurt me? Is it worth doing that for now and then when I see the Neuro in August asking them for the Methyl? THanks for any advice!

mrsD 06-21-2014 05:52 AM

If you have the genetic mutation in MTHFR then you will not convert cyano form of B12 efficiently, or folic acid to methylfolate.

Oral methylcobalamin works as well as injections or better, if you take it properly... on an empty stomach every day. It costs pennies a day too.

Methylcobalamin is available in injectable form, from a compounding pharmacy. It is unstable once mixed into a liquid form but may be kept in the frig for short periods until used.
It is not carried in regular pharmacies because of the short shelf life.

If you don't have the genetic mutation (and estimates today are 10-30% of people do have it)...cyano should work for you.

An alternative injectable that is partially activated is hydroxocobalamin... this is available special order from your pharmacy. (it is used in hospitals to treat cyanide smoke inhalation in the ER).

AnnieB3 06-22-2014 12:37 AM

I don't have much to add. Get the methyl. Period. We already went over this! ;) Cyano in shots or in tablets will do you no good with that double mutation. Geez!

I like Jarrow Formula 5 mg. tablets. Amazon has them at the cheapest price.

You don't need to wait until August! Just get the tablet form.

Annie

bny806 06-22-2014 04:10 AM

Thank yall!! I Was excited to get the injections, as I know i have some malabsorption issues... I have been taking the sublingual B12's for about two months now.. I think I have noticed improvement, which is exciting! I was hoping the injections would help even more.. but I dont' care to do them if they won't help me at all! .. I inintially thought well, I can take the cayno injections and continue with the methyl sublinguals.. it's also nice that the injections are covered by insurance!

AnnieB3 06-22-2014 04:18 AM

But you have the MTHFR issue, right? So you have that conversion issue, cyano into methyl.

I know, my insurance should cover my tablets, too. But it's a necessary cost for me because I can't do without them.

My B12 levels were not rising much at all with the shots. Nor was I healing my nerves.

I hope you continue to heal.

Annie

bny806 06-22-2014 04:35 AM

Yup, I'm homozygous c67tt.. and also now low b12, b6, folate, zinc.. ugh and more! I guess I never realized that it was a conversion issue.. I sometimes wonder if that is my main malfunction!? Though I know I Have autoimmune issues as well, with my always high ANA and good response to IVIG..
So were you taking the cyano shots or methyl? Yes.. I pay $20 for a bottle of b12 that lasts me about 3 weeks.. so not awful.. but still, it's nice when it's free, especially with all the other fun costs! DO you notice a difference with the methyl sublinguals? I have had proprioception issues with my feet, especially left foot.. since starting the B12, it's so much better.. My toes don't do the strange up going walk thing anymore :) I always get the proprioception tests wrong! I guess I am still looking and hoping for that magic fix!

AnnieB3 06-22-2014 04:44 AM

Give it some time! You have years of healing to go through, since the damage has been years in the making.

I was talking about the cyano shots.

http://www.amazon.com/Jarrow-Formula...lcobalamin+b12

$14.69 on Amazon. You could take 1 tablet three times a day. That would reduce costs—if it still is helping at that dose. After more healing, you might be fine on one or two a day. It all depends on how you're doing/feeling.

You can't do the cyano. Did you read that article on my B12 post? And, yeah, it's a conversion issue. Your family should be tested as well.

How many people out there of the 10 - 30% have this issue and don't have a clue about it? Yikes.

Annie

mrsD 06-22-2014 06:45 AM

Methylcobalamin is making it into stores locally now.

Walgreen's has it. Costco too. And yesterday we were in Sam's Club and they even had it.

If you use it sublingually you must still do so on an empty stomach. Most of it that dissolves in your mouth, is in the saliva which you swallow. That can be absorbed passively in the intestine if NO FOOD is present to block it. Sublinguals are really historically offered, but really do not provide much B12 that way. The B12 is in reality absorbed dissolved in the saliva. Recent studies show oral and sublingual equal in effectiveness (so take on an empty stomach so that presence of food in the GI tract does not block the microgram amounts of the B12.)

The nutrients you list as low for you are dependent on stomach acid for absorption. If you take acid blocking drugs frequently or if you have a natural achlorhydria, which many people develop in life with aging, then low acid means you can not absorb nutrients that require acid.

Betaine HCL is a supplement that helps restore normal acidity in the stomach for people with achlorhydria.
At least 600mg with meals (up to about 2 grams if needed) is the typical dose. This should be discussed with your doctor.
As should long term use of acid blocking drugs. Many doctors do not attend to the long term negative consequences of lowering stomach acid.

bny806 06-23-2014 03:36 AM

thank yall so much! I appreciate y'alls advice!!

I have been trying to always take them on an empty stomach.. .. they were thinking I may have crohns like my sister.. but nothing on my scopes showed up as obvious (other than gastritis, esophagitis and apparently the colon was "friable").

I am supposed to be taking a PPI for the acid - I defintely have symptoms of GERD, and my scopes have always shown it as well.. but I have avoided taking them until I can get my vitamin levels up to a more normal range.. I know Long term GERD can have negative consequences, but feel that my vitamin deficiencies possibly worsening my neuro issues are priority for now.. ugh.. That was one reason I was excited about bypassing the stomach with the shots..

They still don't know why I am having malabsorption issues though.. which is frustrating.. DO yall know if MTHFR increases likelyhood for vasculitis? My CRP/Sed rate are always normal, but wonder if that could be a cause of all this mess?

mrsD 06-23-2014 04:11 AM

If you increase your Omega-3 status, with flax oil and/or fish oil or Krill oil, your body will make the Cox-1 cytokines which improve the lining of your stomach and intestines. Low Omega-3 status leads to gastritis, and GERD because the normal mucus coat is not being made properly. Then the domino effect of poor absorption of nutrients begins.

Repairing your GI lining with Omega-3s takes about 3 months.
You need at least one flax oil (or foods with flax in them) and 3 fish oil or 2 Krill oil capsules a day. Take with food. This will also help repair your nervous system.


All times are GMT -5. The time now is 04:26 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.