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Old 02-04-2009, 12:04 AM #41
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Originally Posted by cindyd View Post
Thanks MELODYL! I am healed enough that I can do most everything I always have. I just deal w the pain. I work as a designer in a flower shop. Everyone thinks its a fu fu job. Most people haven't a clue how physcial this job is. Lots of lifting, lugging and twisting motions. Fill a 5 gallon bucket up about halfway and lug that around w you all day long. In the summer, I do that, and I am a landscape designer on the side. Also all physcial work. (love it all tho.) I'm a very outdoorsy (that a word?!) type lady. I have to stay moving to deal with body. I have a question for anyone that might have an answer: Has anyone been on cyanoB12 for years, healed pretty much, and then changed to MethylB12? Did you reverse to old symptoms? Did you feel better? How long did it take before you felt anything? Any reactions, good or bad? I'm very curious, as I don't see this discussed so far. Still reading and asking questions at this point.
I don't understand this question.
Cyano B12 is not biologically active....it is converted to methyl B12 in your body if all is working as it should.(there are 4 steps that your body has to do to get to the active methyl, and some people have genetic failures along the way)

There will be NO going BACK only forward. Just make sure you take enough oral methyl B12 and on an empty stomach.
Melody chooses to remain on 5mg a day. Some people once they are healing and doing well, can reduce to 1mg a day.
Not all that you take orally is absorbed. You need high doses to get the few micrograms passively absorbed in the small intestine without intrinsic factor.
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Old 02-04-2009, 03:44 AM #42
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I came across this thread and thought I'd add my two cents. This post is a repeat from another thread. It seemed appropriate here also. I hope my experience can help someone. Please feel free to question or respond.
You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling
against the wall. I know you want the depression to go away.
If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will!
A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone!
This is what happened to me:
Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.
In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. Negative
I was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.
More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.
Muscle spasms: in arms and restless legs ( still have restless legs)
Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseases
Light headed: vertigo, just not alert, felt high everyday.
Nauseated: everyday, strong odors like bus, smoke or gasoline made me worse
Cold all the time, not chills, just cold
Bladder: frequency and incontinent also UTI
Weight loss: Went from 5'6 130 lbs to 115lbs, way too skinny
Short term memory: terrible and doctors blow it off
Speaking: hard to get words out and make sense
Skin: sensative, hurt when itching self
Shock feeling: back of neck (scary) felt like cattle prod might feel
Heart: palpatations always at night in bed
Pain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body!
Muscles: soreness..shoulders, neck and back
Depression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression.
I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.
OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.
My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess!
Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway.
If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited?
My regular Dr. now screens all patients at their physcial for B12 because of me.
I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood.
A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher.
I have been looking at a few different sites on Pernicious Anemia/B12 deficiency and think I need to change to MethylB12. I've been on cyanoB12 all along. Did'nt know there was an alternative. Sounds like I could benefit from the change as I still have lingering neuro symptoms that could be helped by the change. Good luck to all


WOW! what a GREAT post! You wrote it so well and it was very easy to understand. When you started the b12 wha was your dosage and schedule? What is it now that you are on maintenance? I had a similar situation that started last may, I am thankfull that it has not been as long as yours (time wise). My stomach was horrible and my Dr useless #1, #2, #3.. gave me protonix which did stop the symptoms for stomach but I loearned later that it did nothing for actual problem and one of side effects is parestheisia, which I still have. I am so happy that you have improved and that you are able to return to work, I am not there yet. It is so scarry not knowing what is wrong with your body and Dr's just guessing. Club soda works pretty good for me when the reflux gets bad.
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Old 02-04-2009, 12:29 PM #43
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Originally Posted by mrsD View Post
I don't understand this question.
Cyano B12 is not biologically active....it is converted to methyl B12 in your body if all is working as it should.(there are 4 steps that your body has to do to get to the active methyl, and some people have genetic failures along the way)

There will be NO going BACK only forward. Just make sure you take enough oral methyl B12 and on an empty stomach.
Melody chooses to remain on 5mg a day. Some people once they are healing and doing well, can reduce to 1mg a day.
Not all that you take orally is absorbed. You need high doses to get the few micrograms passively absorbed in the small intestine without intrinsic factor.
Hi Mrs. D.

Actually, I'm afraid to take any less. I'm doing just fine on the 5000 (especially when you find out that you don't absorb 5000 but only a fraction of this, right??). Last time they tested me for intrinsic factor I tested fine.

When I started on the Methy B-12, I started with 1000. I knew after one week that the 5000 would do be much better.

I even went down to 3000 after a few months (a cheaper brand also), thinking, "Well, I'll save some money, I don't need 5000, blah blah"

But I recognized the difference in my body IMMEDIATELY. After I finished that bottle of the 3000, I went back to Jarrows and to the 5000.

As long as there are no ill affects from this dosage (and from what i've reading, there aren't any), I'll continue to take what I'm taking. I now have Alan on it as well. I mean, why not? We don't eat red meat and he needs the B-12.

I get (very occasionaly), the burning, (when the temperature changes from cold to warm, or vice versa. That's also when Alan walks in and says "do your feet burn?" and I look at him and I say "just a bit, look at what it's doing outside".

But otherwise, I'm fine and I want to continue to be fine.

As for the energy, well, what can I tell you.

This morning, after coming back from my local breakfast place, I made homemade yogurt, then I took all 9 of my mason jars and grew a whole new bunch of sprouts ( I use home-made green tea instead of water), I harvested the sprouts I've been growing, I de-hulled them over my kitchen sink. Busy busy morning, AND I LOVE THIS!!! Keeps my mind occupied.

I made a batch of blueberry muffins (vegan). Just took them out of the oven.

I'm about to make a spinach quiche.

I don't think I'd be able to be so productive if I didn't use the Methyl B-12.

I have friends my age who are sitting down and can't move.

I'd rather move!!!

lol

Oh, I had been using cheesecloth to strain the sprouts in my wide mouth mason jars. I went online to see how much those strainer lids cost. They can cost up to $4.95 for each strainer lid. I actually made my own sprouting jar stainer inserts from strainers that I had lying around (I'm like McGuyver, I like to make stuff). They work just fine and I saved BIG moolah doing this.

Melody (the sprout-lady)
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Old 02-04-2009, 12:55 PM #44
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Hey all, well I have neuropathy, nerve tingling and numbness pain for years.. not dxed with anything, watched for MS.

anyhow although B12 tests looked good, I had bought some sublingual liquid B complex to try each day. Forgot after a few days, but just thought of it now that I found this thread. It says contains 1200mcg of B12.

Just curious how long you guys had been on B12 before noticing any improvements? are you on other regular dr meds too? I am on neurontin, and occasionally prednisone.

hugss and thanks for info, wasnt sure if that is the kind of B12 to take but I had bought it, so took some today and might try daily for a while see if notice any difference. hugss,sarah
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Old 02-04-2009, 03:14 PM #45
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Wink Well Melody...

You certainly have worked hard to improve your life and Alan's.

And for the others here, methyl B12 is the least expensive and EASIEST improvement of them all!

All the hemming and hawwing about it.... for pennies a day you can change your life. That is the bottom line!

I guess it is the "long name" of the compound that makes people feel wary.
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Old 02-04-2009, 04:12 PM #46
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Originally Posted by mrsD View Post
You certainly have worked hard to improve your life and Alan's.

And for the others here, methyl B12 is the least expensive and EASIEST improvement of them all!

All the hemming and hawwing about it.... for pennies a day you can change your life. That is the bottom line!

I guess it is the "long name" of the compound that makes people feel wary.
Hi Mrs. D.

Here's a funny story. This morning, as I was hustling and bustling and "doing my thing", Alan was still asleep. He gets up late on some mornings. So when he sleeps, I DO MY THING!!!

so he finally gets up and I'm all done with the muffins and the sprouting lids, and I just popped the quiche in.

I walk into the bedroom and he goes "good morning". I said: "you must see what I've been up to...and I bring in the big tray of blueberry muffins, and I show him, and I bring over the sprouting jar strainers that I made, and I then go and get the broccoli sprouts that have just turned green and I'm showing him, and I said "oh, I have a quiche in the oven".

He looks at me and deadpans:

"I WANT TO TAKE WHAT YOU'RE ON, GO AND GET ME THE METHYL B-12".

I said "it's right next to you on the nightstand". He then popped it under his tongue.

lol
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Old 02-04-2009, 05:39 PM #47
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FINALLY! good going! - j
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Old 02-04-2009, 10:15 PM #48
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Default B12 levels

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Originally Posted by mrsD View Post
I don't understand this question.
Cyano B12 is not biologically active....it is converted to methyl B12 in your body if all is working as it should.(there are 4 steps that your body has to do to get to the active methyl, and some people have genetic failures along the way)

There will be NO going BACK only forward. Just make sure you take enough oral methyl B12 and on an empty stomach.
Melody chooses to remain on 5mg a day. Some people once they are healing and doing well, can reduce to 1mg a day.
Not all that you take orally is absorbed. You need high doses to get the few micrograms passively absorbed in the small intestine without intrinsic factor.
I'll rephrase the question. Has anyone out there been suffering B12 deficiency, put on injections of cyanocobalamin. Been on these injections for a few years. Been helped by them and then changed to MethylB12 injections or sublinguals. Did you have any set backs or reactions?
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Old 02-04-2009, 10:35 PM #49
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Default B12 levels

To ru218, The doctor started me on l inj. of cyanoB12 (that I'm still on) lx a week, 1cc. I was on that schedule for almost a year. These doctors!!! I didn't know that much back then. I've only recently gotten on line to do research, and am learning a lot. I am working on getting my neuro doctor up to speed too. He's been great. My injections are only lx a month now. I also do sublinguals. I've looked around this area, and nobody sells the MethylB12 in any form. Neuro doc. should agree to those injections and I can get sublinguals on line. Thanks for the nice words. I appreciate it.
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Old 02-04-2009, 10:48 PM #50
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I'll rephrase the question. Has anyone out there been suffering B12 deficiency, put on injections of cyanocobalamin. Been on these injections for a few years. Been helped by them and then changed to MethylB12 injections or sublinguals. Did you have any set backs or reactions?
Why would you have a setback or reaction. When a person takes cyanocobalimin, their body changes this to Methylcobalimin.

so when a person switches from cyanocobalimin to methyl, well, they are getting more of the stuff they should have been getting in the first place.

I have NEVER heard of anyone suffering any setbacks or anything, from simply switching from Cyanocobalimin to Methyl B-12.

Your body does the changing. So if a person is only taking cyanocobalimin, it has to be converted (to Methyl) for it to be doing any good.

So you have been getting injections of cyano, right? This means that your body is taking the cyano and converting it to methyl.

If you take the stuff that I take, (Jarrows methyl b-12), all that would mean is that the methyl would do what it is supposed to do. It won't have to be converted.

It's a GOOD THING!!!

I wonder if your doctor could give you injections of Methyl b-12.

I don't need to do this. I have GREAT SUCCESS with just taking the oral pill first thing in the a.m.

I only wish we knew this YEARS ago, when my husband first got PN. He's not diabetic, but believe me, if I KNEW THEN, what I KNOW NOW!!! he might not have had all those years of pain. At least he now takes it.

Melody
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