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-   -   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.

AnnieB3 06-23-2014 04:13 AM

Cyanocobalamin won't be used by your body. It is stored in the liver and is converted to methylcobalamin before the body can utilize it. Your body, due to the MTHFR, does not make that conversion happen. It never will.

Do you know exactly what the description was of what they saw on any scopes of your stomach? Scopes don't show GERD. They show inflammation, or other such identifiable signs. Did they ever test your stomach's pH while down there?

The chance of you having too much stomach acid is pretty low. Our stomachs age, just as every other part of the body does. And the symptoms of too much and not enough stomach acid are very similar.

Okay, here's the gross part. Do you ever see undigested food or tablets in your poops? That's another sign it's not enough stomach acid.

What are your symptoms about 30 - 90 minutes after you eat?

Have you ever tried to have apple cider vinegar with your food? It has a similar effect as Betaine HCL does.

Vitamin deficiencies are no small thing! They can lead to disease states.

If you don't have stomach acid, food literally putrefies in the GI tract, causing inflammation, which can lead to infection and cancer.

The drug companies push antacids/acid blockers, etc. as though they were candy. It makes me nuts. Short term use of them can cause problems as well. They make it seem as though everyone on the planet has an acid problem. Only about 4% do, and they are mostly young people.

You have to understand that many doctors did not learn about hypochlorhydria (low stomach acid) or achlorhydria (no stomach acid) in school. Or if they did, that knowledge has since been replaced by the status quo of GERD and drugs. Doctors are pushed hard to prescribe acid blockers/inhibitors. How often do you ever hear about a lack of stomach acid in TV ads? Never, because the drug companies don't have a product to sell you for that.

I'm so exhausted by this topic. I could go on and on about it. Just be sensible and do some research. Achlorhydria alone can cause absorption issues. It did with me.

BTW, did they ever retest you for celiac or test you for pernicious anemia?

I hope you can get all of this figured out. Have patience about progress, though. It might take a while.

Annie

bny806 06-24-2014 05:51 AM

Thank yall so much!!!

My scopes showed esophagitis, gastritis, (abnormal Z line as well), and then my colon was friable everywhere they biopsied... The small bowel follow through showed possible polyps in the small bowel.. though my pill cam didn't show anything abnormal (I had read inflammation, and of course cancers AND celiac can cause small bowel polyps)..

my blood tests were negative for celiac.. my scopes didn't appear like celiac.. though I was gluten free for all of the above for a while.. before this last scope, I attempted to "gluten it up" for 4 days prior.. but I had read you should for 6 weeks to be accurate.. those 4 days I didn't eat much, as it made me sooo sick.. I have 2 family members with celiac (diagnosed as adults).. and I had massive weight loss/malabsorption 3 years ago when this all started.. The more I ate.. the hungrier I was.. I thought I should just eat more and more cookies, I needed calories.. but the more I ate, the more I lost- it was crazy! So, I stay gluten free strictly.. have been for 3 years.. I attempt it every once in a while - but I get blisters on my hands and then worsened GI issues + wt loss..

30-90 min after I eat.. depending on how calm my GI issues are in general.. at the worst about 20 minutes after I eat I can have pain and start feeling a LUQ tummy ache.. When I am having a bad flare.. the second I ate, I have to use the restroom.. 90 min after I eat things usually have calmed down, unless it's an all day mad GI day.. I also can have an issue where I develop tachycardia and get flushed about 10-15 min after I ate.. and sometimes it stimulates massive hunger...


I actually have a Rx for xifaxin to take to treat SIBO.. but I wanted to wait until I had a few days off work to start it! Yall heard of this?

Again, I am supposed to be taking a PPI.. but havne't, as I want my body to have a better chnace of absorbing the B12 first...

mrsD 06-24-2014 06:37 AM

To keep the GI tract mucosa healthy, one has to have Omega-3's in the diet.

Also I'd suggest Kefir...as this has 12 strains of probiotics in it.
(more than any other food source).

Excessive motility, and flushing can be a serotonin reaction.
This can come from tumors around the GI tract called carcinoids.
This is not common, but is overlooked in difficult to diagnose patients.

http://www.carcinoid.com/patient/und...62109045829652

Not everyone gets all the symptoms, but as the tumors spread past the liver, the symptoms increase.(serotonin escapes into the general circulation then).

This is why some people on SSRI antidepressants get diarrhea and flushing too...it is a serotonergic response.

I'd also suggest some high dose biotin..this helps alot with skin and mucosal linings. 5mg a day for a while may show you some improvements. This is inexpensive and not a toxic type supplement and often overlooked by doctors. Difficult GI problems often respond to biotin, even chronic canker sores in the mouth. I get mine at Puritan's, and now Costco has started selling Natrol brand.


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