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Old 05-06-2015, 04:21 PM #1
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Originally Posted by mrsD View Post
If you had a big change with methylfolate...I'd suspect you have the DNA mutation problem.

You could increase to two of them a day, and see what happens.
You already use the methylB12 so it is safe to increase the folate too.

Often when a deficiency exists and you start to repair it...there can be a "priority factor" where the body sends the newly offered item, to various spots in the body where there is need...like the brain, bone marrow, etc. So increasing a bit may give more opportunity for the folate to work.

You can add in the P5P whenever you want. I'd wait a few days to see what the extra folate does. The P5P works mostly in the methylation chemistry and formation of neurotransmitters. It is also protective of the heart. P5P is not involved with the methylation DNA transferases that I know of...but works along side with other systems.

Thanks Mrs. D for the quick response.

I'll give the extra methylfolate a shot and see what happens. I've also been considering getting the testing done for the MTHFR mutation - this might be a signal that I should go ahead and spend the hundred bucks. (Small potatoes compared to all the deductibles and copays I've paid for all the other tests and appointments over the past several months........)
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Old 10-15-2015, 08:37 PM #2
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Hi, I am new to this forum. I was diagnosed with peripheral neuropathy following an EMG the end of March 2010. All my blood work was normal except for a B12 of 190. (I had to insist that my neurologist even run a B12 test on me--he said he didn't think I could have a low B12 since I maintain a good diet.) My neurologist told me that 190 was not low, and I would not benefit from treatment with B12 injections. My husband and I insisted that a value of 190 was low and the neurologist begrudingly gave us a prescription for B12 injections. My husband fortunately was able to give me the injections at home. I started B12 injections as well as oral supplements on April 7. I also started acupuncture the same week. The burning in my legs was horrific. I screamed all night and cried all day. I had pain in my thighs as well. I could not sleep and was prescribed Ambien. I was able to sleep with the Ambien but also got very depressed while on the Ambien and quit eating, thus losing over 10 lbs in short order. I was then prescribed Paxil. I was spiraling down very fast and not wanting to live if I had to have this pain all my life and take all kinds of drugs to control the pain. However, by week five on the injections, supplements, and acupuncture my body finally began to rally. The burning and pain in my legs stopped and now the numbness in my feet and hands is almost completely gone. I was fortunate to have a wonderful support group of family and friends who prayed for me daily and I know that God has answered all our prayers.

I tell everyone I meet now to have their B12 checked. I am 58 years old and in good health. I have been treated for hypothyroidism for over 30 years and I now know there is a link between thyroid disease and malabsorption of B12. I also used Pepcid fairly regularly and had a high intake of caffeine every day, all of which prevent the absorption of B12. I have taken alcohol, sugar, and caffeine out of my diet.

Please do not let your doctor tell you that B12 is not a factor. Have your B12checked. I had to plead with my neurologist to even check mine and then plead with him to treat me with B12 injections. If you are below 500 demand to be treated. Now two months after being diagnosed with peripheral neuropathy I feel that I am about 90% recovered. Don't let them tell you your PN is idiopathic. Keep reading and doing research, be a strong advocate for your own health. If I had not done all this detective work myself regarding B12 I would be bed bound by now, on Lyrica, Paxil, and Ambien every day because my doctor said I was pretty much doomed and encouraged me to take all these medications.

The supplement I have been using is Nerve Support Formula which I purchased on Amazon because shipping is free. This treats neuropathy, no matter what is causing it. You have to take it consistently at fairly high doses for at least two months to get benefit. Their consultants are available all day to talk to you and help you individually. I think the combination of B12 oral supplements, injections, and acupuncture has pretty much healed me and I want to share my story with everyone. I am happy to communicate with anyone on this topic. There is help out there.
Where did you get the injections once you had a prescription in hand? Also, how frequently did you inject.

Thanks,

Cliffman
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Old 10-16-2015, 07:33 AM #3
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Where did you get the injections once you had a prescription in hand? Also, how frequently did you inject.

Thanks,

Cliffman
There have been no credible test results known to me that even suggest that injections of Methylcobalamin (Methyl B-12) produce more effective results than a suitable oral regimen. Yarrow Formulas puts out a chewable, taken once a day on an empty stomach, in the dosage of 5000 mcg. Don't let that # scare you away, as the body is disposed to tolerate greater levels than lower, not to mention the logistical convenience of oral over the steps necessarily involved with injections.

I supplement this daily with another Yarrow complex named B-Right, maybe due to my "old school" belief that larger doses of a single B, prove ultimately more effective when taken in concert with a good B complex. Both are available through Amazon.com or other online venues that fellow members would be more than happy to suggest.

Wishing continued turn-around good luck.
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Old 10-16-2015, 08:16 AM #4
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Lightbulb

If you are set on injectable methylcobalamin... you have to get that at a compounding pharmacy if you want them loaded into syringes. Once loaded, into syringes it requires refrigeration and the typical shelf life is 30 days.

The typical injectable B12 is cyano form and not the activated one. 10-30% have the MTHFR mutation and cannot methylate cyano and folic acid (in supplements) properly.

The newest studies show that oral will work, as well with less invasiveness, better results if using the methyl form and taking it on an empty stomach.

If you are somehow set on injectable, good luck to you. Most posters here complain about the injectable type of cyano.
Stop all supplements about a week before any retesting.
Whatever is causing your lower numbers, is not likely going to
evaporate. Most people require supplements for life, therefore.
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Old 10-16-2015, 08:49 AM #5
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Originally Posted by Sarge View Post
There have been no credible test results known to me that even suggest that injections of Methylcobalamin (Methyl B-12) produce more effective results than a suitable oral regimen. Yarrow Formulas puts out a chewable, taken once a day on an empty stomach, in the dosage of 5000 mcg. Don't let that # scare you away, as the body is disposed to tolerate greater levels than lower, not to mention the logistical convenience of oral over the steps necessarily involved with injections.

I supplement this daily with another Yarrow complex named B-Right, maybe due to my "old school" belief that larger doses of a single B, prove ultimately more effective when taken in concert with a good B complex. Both are available through Amazon.com or other online venues that fellow members would be more than happy to suggest.

Wishing continued turn-around good luck.
Hi Sarge,

The only evidence I have read about was in the book "could it be VitB12"? They claim the shots are needed if one has neuropathy issues. That said, I have no idea if it's really true.

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Old 10-16-2015, 10:08 AM #6
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Lightbulb

Sarge, the company you are describing is JARROW (not Yarrow).
It is one of the first who offered oral methylcobalamin and at one time was only available on iherb.com

Today we have other suppliers which are at Puritan's Pride, Costco and Walgreens and perhaps other local places. In the old days, over a decade ago we were only able to get it online.

I tested out the Puritan's myself, and at 5mg a day reached a blood level of 1999 (the top of the calibration range).

And as I mentioned before, if the MTHFR mutation is present, then one needs the methylfolate also.

We are rather fortunate that in some ways repairing B12 levels is fairly simple, now, and inexpensive. Information changes, new studies come out, and like most medical things, are not cast in stone. Still doctors may cling to their old therapeutic manuals, which were printed before 2003. The AAFP link I provide gives new medical information targeting doctors, in 2003 and still people cling to the "old ways".

I personally think once a month shots are artificial. We evolved getting our B12
orally from food. When that fails (due to low acid in the stomach or damaged intrinsic factor), then high dose oral is the next best thing IMO. A study I provided earlier shows that 1000mcg oral yields about 13mcg absorbed into the blood.(the remainder is excreted in the stool. This is about 2.5 times the RDA. Injectables only last in the blood for 72 hours, and the excess is excreted, since only minute micrograms can be handled at a time by the systems in the tissues. The same study showed 145mcg in the blood following an injection of 1000mcg. So people getting injections do not all get lasting benefits that way. If you read the whole B12 thread you will find those people who didn't do well on injectable ALONE.


Quote:
Originally Posted by Sarge View Post
There have been no credible test results known to me that even suggest that injections of Methylcobalamin (Methyl B-12) produce more effective results than a suitable oral regimen. Yarrow Formulas puts out a chewable, taken once a day on an empty stomach, in the dosage of 5000 mcg. Don't let that # scare you away, as the body is disposed to tolerate greater levels than lower, not to mention the logistical convenience of oral over the steps necessarily involved with injections.

I supplement this daily with another Yarrow complex named B-Right, maybe due to my "old school" belief that larger doses of a single B, prove ultimately more effective when taken in concert with a good B complex. Both are available through Amazon.com or other online venues that fellow members would be more than happy to suggest.

Wishing continued turn-around good luck.
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Old 10-16-2015, 10:14 AM #7
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Lightbulb

The book "Could it be B12" came out originally in 2005.
There is a second ed. in 2011, but I don't see mention of updated material, just a reprinting. It is possible the newer edition has newer information.

This youtube I believe is from the book you have, but I am not positive:
https://www.youtube.com/watch?v=BvEizypoyO0

It is not complete however, and does not get into MTHFR mutations or much of the methylB12 information.
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Old 10-16-2015, 06:18 PM #8
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Originally Posted by mrsD View Post
Sarge, the company you are describing is JARROW (not Yarrow).
It is one of the first who offered oral methylcobalamin and at one time was only available on iherb.com

Today we have other suppliers which are at Puritan's Pride, Costco and Walgreens and perhaps other local places. In the old days, over a decade ago we were only able to get it online.

I tested out the Puritan's myself, and at 5mg a day reached a blood level of 1999 (the top of the calibration range).

And as I mentioned before, if the MTHFR mutation is present, then one needs the methylfolate also.

We are rather fortunate that in some ways repairing B12 levels is fairly simple, now, and inexpensive. Information changes, new studies come out, and like most medical things, are not cast in stone. Still doctors may cling to their old therapeutic manuals, which were printed before 2003. The AAFP link I provide gives new medical information targeting doctors, in 2003 and still people cling to the "old ways".

I personally think once a month shots are artificial. We evolved getting our B12
orally from food. When that fails (due to low acid in the stomach or damaged intrinsic factor), then high dose oral is the next best thing IMO. A study I provided earlier shows that 1000mcg oral yields about 13mcg absorbed into the blood.(the remainder is excreted in the stool. This is about 2.5 times the RDA. Injectables only last in the blood for 72 hours, and the excess is excreted, since only minute micrograms can be handled at a time by the systems in the tissues. The same study showed 145mcg in the blood following an injection of 1000mcg. So people getting injections do not all get lasting benefits that way. If you read the whole B12 thread you will find those people who didn't do well on injectable ALONE.


mrsD, thanks much for the correction, as well as the additional venues for purchase. It appears my heart was in the right place, while my head was in some other location--especially since the proper name spelling is plainly and prominently on a written list not 8 inches from my left elbow while at my keyboard. Apologies to all for the careless misinformation and now obvious omissions--can't get away with blaming this one on my PN.

Last edited by Sarge; 10-16-2015 at 06:42 PM. Reason: Addition
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Old 10-17-2010, 08:45 AM #9
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Default B12 Injections

I've recently been diagnosed with sensory motor peripheral neuropathy and took B12 shots every day for 2 wks, then was told to have them once a month. My level to begin with was around 180. What should my level be now? I feel confident that my doctor instructed me appropriately, as he is actually the doctor who first wrote a paper and 'discovered' the link between B12 deficiency and PN, but I'm now wanting to question what my level is now, and what your "number" is for what may be optimal, considering your success with the treatment. I have been in a wheelchair now for 9 mos., am on Lyrica, Neurontin, Valprioc Acid, Pristiq, and Vicodin - all of which provide some relief, but only if I keep my feet propped up most of the time and rest with my hands elevated (my pain is in my feet and hands with all the classic symptoms). I've had 2 NCSs and 2 EMGs, all of which showed damage. I'm 39, non-diabetic, have had a normal MRI and lumbar puncture, tried a gluten-free diet, aspirin therapy, and next week I have an Evoke Potential test, and a nerve stimulator has been suggested, along with a neuromuscular specialist. Only thing not addressed so far, which I have repeatedly complained of, is an 'aching' of the bones in hands and feet - literally feels like they are broken at times, particularly if I'm late on taking my meds. Could B12 be more of a solution than what has been tried thus far? Also, do you have any suggestions regarding any other supplements?

Any help would be greatly appreciated - from you and anyone else!

Thanks,
Trish
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Old 10-17-2010, 09:11 AM #10
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Lightbulb Welcome to NeuroTalk:

With a very low level of B12 for a long time period... it may take a while to recover. If there has been permanent damage to the spinal cord from the low levels, there may not be 100% resolution.

This post link has a copy of the paper by Dr. Snow, which is from 1999. His take which I bolded there is that patients with neurological problems may have to be kept at higher than typical range for treatment, than most others:

http://neurotalk.psychcentral.com/post698522-70.html

The cut off in US now appears to be 400. But following Dr. Snow's advice, would mean you should strive for higher. I'd say at least 1000. You can reach that goal by taking oral properly.
5mg of methylcobalamin (which is the active form) daily on an empty stomach has worked for many on this forum.

Many doctors don't know about active form, being available and so hence they still use the synthetic which some people cannot activate in the body. That link above I gave, is from the B12 thread, which has medical links and explanations about the various treatments and reasons for them.

So please read it carefully, the whole thread, and perhaps then your path may be clearer.
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