Methyl B12 side effects?

[aprilk1869]

Yes, I floss a couple times a day. I think there's a few possibilities -- like you say folate deficiency, which I know I have, is probably a biggie. Also vitamin C. I don't take very much at all, but am going to increase it as soon as I can get more, hopefully tomorrow. (I do get some in the adrenal supplement.)

I have read that vitamin C is used mainly for producing collagen. One way of getting more collagen is to make bone broths.

Scurvy is a disease caused by a deficiency of vitamin C. It results in symptoms such as bleeding gums, bruising, and poor wound healing. These manifestations are actually due to a deficiency of collagen, because vitamin C is needed to synthesize collagen. It converts proline into hydroxy proline.33 Collagen, along with minerals are needed for the creation and healing of bone. It is also integral to cartilage formation and repair, along with GAGs.
http://www.townsendletter.com/FebMarch2005/broth0205.htm

If you're interested in knowing more about bone broths I highly recommend you read the above article I linked to. I haven't made these broths myself but I would like to soon.

 

[Freddd]

I have read that vitamin C is used mainly for producing collagen. One way of getting more collagen is to make bone broths.



If you're interested in knowing more about bone broths I highly recommend you read the above article I linked to. I haven't made these broths myself but I would like to soon.

Hi April,

Vit C is about collagen being made as tissues form in cooperation with other vits. , Not about eating collagen. Not the same.

 

[Lou]

Hi Freddd,

The information in your post #25 is something I've searched for for a long time. My experience with methylation protocol was a disaster after the first day. Initially, one tab of folapro, and other supplements I can't now recall, along with mb12 gave my brain a nice feeling. Next time, I didn't feel so good, and then on the third try I felt awful. Though I'd had not high blood pressure issues before, my next doctor's visit revealed it as sky high, I think about 170/110. Btw, I'm pretty sure I was taking coq10 at the time as well. Anyway, finally, looks like someone else has experienced this, and it turns out to be a person with a lot of knowledge about methylation.

I stopped my muscle loss(though reversal has been much harder) luckily. In my case the only thing helping with reversal has been gcmaf, which is a treatment for ME, and which I've temporarily discontinued due to inflammation. So, very interested in what you say about adb12 and carnitine fumerate.

I'm fairly scientically challenged, these methylation protocols very quickly become a total incomprehension for me. Is it possible I've given you enough information to make suggestions for a very simple restart of methylation?

Thanks,

Lou

 

[Freddd]

Hi Freddd,

The information in your post #25 is something I've searched for for a long time. My experience with methylation protocol was a disaster after the first day. Initially, one tab of folapro, and other supplements I can't now recall, along with mb12 gave my brain a nice feeling. Next time, I didn't feel so good, and then on the third try I felt awful. Though I'd had not high blood pressure issues before, my next doctor's visit revealed it as sky high, I think about 170/110. Btw, I'm pretty sure I was taking coq10 at the time as well. Anyway, finally, looks like someone else has experienced this, and it turns out to be a person with a lot of knowledge about methylation.

I stopped my muscle loss(though reversal has been much harder) luckily. In my case the only thing helping with reversal has been gcmaf, which is a treatment for ME, and which I've temporarily discontinued due to inflammation. So, very interested in what you say about adb12 and carnitine fumerate.

I'm fairly scientically challenged, these methylation protocols very quickly become a total incomprehension for me. Is it possible I've given you enough information to make suggestions for a very simple restart of methylation?

Thanks,

Lou

Hi Lou,

There is a whole lot coming together. I would suggest getting down to the basics for starters, you know all the basic vitamins and minerals and omega3 oils and lecithin that the body needs to heal and form tissue. These disorders tend to trash our digestive system and causes all sorts of problems. To go with the program that is most likely to work, get rid of folic acid, folinic acid, glutathione, whey, NAC. All of these can cause various forms of induced folate deficiency and increase inflammation. Various things can be added later once you know what healing is like to test it's functioning if healing is not progresssing well enough. Also, don't include COQ10. It can cause high blood pressure in the early stages of healing.

Then methylb12 in the form of 1 or both of the two 5 star mb12, adb12 and Metafolin. After these get established then add l-carnitine fumarate. Also, as low potassium is a very common induced deficiency as soon as methylartion gets started well be sure to at least have it on hand. Read the stick on the methylation menu, active b12 protocol basics

 

[Lou]

Thanks very much, Fred, now I'm all set to try methylation again. And you're also right about the potassium, a recent hair analysis revealed it as low.

All the best,

 

[SoniaR]

Hi Sonia,

Being a vegetarian for 20+ years almost killed me. I look at the MCV and wonder why the MCV is so small, because of a concurrent low iron? I don't know if marginal low iron would do that or not. However, as many of us have learned the tough way that low CNS cobalamin without low body levels of cobalamin is very possible.

MRI of brain won't show problems of cord. MRI of brain and cord can miss the demyelinations in any case. There is some guidance on line on how to set up the "weighting" on the MRI to see the lesions.



Chances are reasonable that you can do this with the Jarrow sublinguals. You need to find the dose that increases the tingling in the numb areas or already affected tingling areas. This can be maintained on the Jarrow alone with a sufficient dose held for 2-3 hours. Sub cutaneous is real easy. Use an insulin syringe and find an area with a some subcutaneous fat, squeeze it into a lump and insert needle at 45 degrees and inject. It is almost painless. It takes longer to fullly difuse but maintains a serum peak longer. A 5mg Jarrow held for 2 hours under lip is equiv to 1mg injection approximately. 15mg of Jarrow plus 3mg of Enzymatic therapy held for 3 hours under lip will give a 5-6mg injection equivelent. If done daily and maintained for a couple of years it might actually fully heal the SCD enough that a maintenacne dose will keep it going. If he doesn't heal it soon it will become permanent and then he will gradually run down until it cripples him and then kills him. It's too bad that the docs are willing to sacrifice his neurologu y to a real ptroblem to save him from a theoretical problem that I have never actually heard of happening from mb12 injections depite hundreds of person years experince with myself and other people injecting up to 30mg of mb12 for years. My neurology is very damaged from long non treatment and it's all I can do to hold steady now. If I stopped I would be in diapers and a wheelchair in months with mood, personality changes and hallucinations to follow.

Good luck.

Hi Fredd,

We are planning to try the 50 mg sublingual dose. We have all the supplements you mentioned (Solgar Metafolin 800 mcg tablets, AdB12 and omega3) except for L-cartinine which I will try to order from Iherb. Also I want to know if Metafolin needs to be taken orally or sublingual. Apart from what you have already told us can you please let us know what to expect from the 50 mg dose.

Also, you mentioned in the above post that we need to find a dose that increases tingling in numb areas or already affected tingling areas. At present my son has no numb or tingling areas.He used to have very slight random tingling earlier but all that has stopped long back. Should we expect a change in the 2 main problem areas - lack of proprioception and dizziness? Many thanks, sonia

 

[Freddd]

Hi Fredd,

We are planning to try the 50 mg sublingual dose. We have all the supplements you mentioned (Solgar Metafolin 800 mcg tablets, AdB12 and omega3) except for L-cartinine which I will try to order from Iherb. Also I want to know if Metafolin needs to be taken orally or sublingual. Apart from what you have already told us can you please let us know what to expect from the 50 mg dose.

Also, you mentioned in the above post that we need to find a dose that increases tingling in numb areas or already affected tingling areas. At present my son has no numb or tingling areas.He used to have very slight random tingling earlier but all that has stopped long back. Should we expect a change in the 2 main problem areas - lack of proprioception and dizziness? Many thanks, sonia

Hi Sonia,

At present my son has no numb or tingling areas

Actually that is really good news. Those are the quickly affected areas. Your son, since the problem is due to vegetarianism may not have the problems fo getting cobalamin into the CNS that folks with FMS/CFS have, like me, so the CNS is disproportionatelt affected.

lack of proprioception and dizziness

These are SLOW to heal. I can't tell you how long becasue they tend to fade slowly. For me they were gone about year after I started the higher doses needed to penetrate the CNS for those with that difficulty. The proprioception contiuned to worsen for 4 years will taking lesser doses, like 20mg sublingually a day. Then healing took several years but included setbacks becasue of the folate deficiencies from various causes. Again, your son may not have that problem. The 50mg dose will tell. There are two different single dose tirals, one for MB12 and one for adb12. Both are needed for healing. If either or both make a noticable difference that tells you something. If neither makes a noticable difference, we don't know enough to assign a meaning except that there isn't am very obvious deficiency. Some causes of symptoms just don't show any quick change. It would be better to waqit until AFTER the l-cartnitine fumarate is in place because that can allow a change that is very noticable. Also, it is highly likely that he is short on that, being a vegetarian.

India is one of the places in the world I would very much like to visit while I still can. We don't have anything really old in the USA.

 

[SoniaR]

Hi Fredd,

Such a relief to know about the numbness/ tingling. Last year my son was on 2 mb12 injections a week and was also taking 3 sublingual mb12 of 5000 mcg daily and adb12 two times a week and he said sometimes he used to feel about 60-70% ok. Then we ran out of the Jarrow 5000 mcg and he started feeling less better and his symptoms started worsening.

Please tell me if Jarrow's l-carnitine fumarate is the one to order and what is the dosage per day. Also how much of it should be taken in the 50 mg dose test.

I also found the following on the CIMS India site. What do you think?
CARDI-NRG [ Bionova ]
Content: CARDI-NRG cap: L-carnitine L-tartrate 300 mg, vitamin E 100 mg, coenzyme Q10 30 mg, magnesium 100 mg.

Do make a plan to come to India. There are lots of interesting places to visit.

 

[SoniaR]

Hi Freddd.

We have found a supplier in India (http://www.health-mall.in) who stocks Jarrow, Country Life and Source Naturals. So this has taken some stress off.

For loss of proprioception is it advisable to do physiotherapy? My son's neck is very stiff because of B12 deficiency and he is very averse to doing any neck strengthening exercises because his dizziness increases when he turns his head. But I think he should still do some exercises to improve his proprioception. Look forward to receiving your thoughts.

Thanks
Sonia

 

[Freddd]

Hi Freddd.

We have found a supplier in India (http://www.health-mall.in) who stocks Jarrow, Country Life and Source Naturals. So this has taken some stress off.

For loss of proprioception is it advisable to do physiotherapy? My son's neck is very stiff because of B12 deficiency and he is very averse to doing any neck strengthening exercises because his dizziness increases when he turns his head. But I think he should still do some exercises to improve his proprioception. Look forward to receiving your thoughts.

Thanks
Sonia

Hi Sonia,

The mb12 and adb12 and cofactors will generally relieve the abnormal muscle pain and stiffness over some months without physical therapy as this is neurologically caused. The dizziness will generally be releived far more quickly. Good luck. Time is of the essence to prevent permanent brain damage.

 

[Lou]

Hi all,

Iv been on Fredds protocol about two weeks, at first maybe mild positive things and I very quickly ramped up the dosage. Problem is, Im now in a foreign country, hardly speak the language, and Ive got dizziness like not since first got ME. The answer is probably listed a zillion times on this forum, but brain isnt working, could I ask if brain inflammation is common in Fredd protocol?

Many thanks for any answers.

 

[Freddd]

Hi all,

Iv been on Fredds protocol about two weeks, at first maybe mild positive things and I very quickly ramped up the dosage. Problem is, Im now in a foreign country, hardly speak the language, and Ive got dizziness like not since first got ME. The answer is probably listed a zillion times on this forum, but brain isnt working, could I ask if brain inflammation is common in Fredd protocol?

Many thanks for any answers.

Hi Lou,

Dizziness is often a symptom of deficiency and the cause is neurological. With the neurological symptoms there is very often a regression through the same symptoms, backwards, as the active protocol is helping. And instead of creeping up on you and happeing over years it happens much faster and harder. If this is the reversal, and as long as your potassium is taken care of and you are using Metafolin and there aren't any other reasons to think it is another induced deficiency, going through it backwards is quite possibly the cause. Neurological changes are not pleasant but it is good to feel better afterwards. Good luck.

 

[Lou]

Hi Fredd,

I didnt realize just how much gain Id made on ME until these reversal symtoms. If I was home Id definitely try and push on. Here, I really cant risk thes symptoms getting any worse(I might literally pass out taking a stroll). Unless I get to feeling much better with a temporary stop of the supplements Ill have to wait til almost March to get back on the mb12/metafolin horse. I should have thought this out much better, guess Id just got too confident in last few years with my improved health(though no way completely healed).

Thanks, Fred, for that quick response.

 

[Freddd]

Hi Fredd,

I didnt realize just how much gain Id made on ME until these reversal symtoms. If I was home Id definitely try and push on. Here, I really cant risk thes symptoms getting any worse(I might literally pass out taking a stroll). Unless I get to feeling much better with a temporary stop of the supplements Ill have to wait til almost March to get back on the mb12/metafolin horse. I should have thought this out much better, guess Id just got too confident in last few years with my improved health(though no way completely healed).

Thanks, Fred, for that quick response.

Hi Lou,

generally one does better if just cut back on the dose on the mb12 leaving the other things in place. Starting and stoping sets up osccilations that get worse each time. As mb12 drains from the system quickly it won't keep increasing. Stop mb12 for 1 day and then start it up at the older dose. Also, most things like this change again as quickly as they came on.

 

[zamora]

Hi,

I've been suffering from Labrynthitis for the last few weeks and in my desperation I took 500mcg of Jarrow MB12 last Saturday (14 July) and 750mcg on Sunday (15 July). On the following Monday my Labrynthitis seemed to dissapear.

But for the next 4 days I felt sick to my stomach with massive anxiety, insomnia and a little dizziness, since then I still have the anxiety, insomnia and a little dizziness today, and it has been a week now since I first took the MB12.

I've been eating bananas and raisins regularly to keep my potassium up.

I've recently been taking TMG, and this seems to be helping a little.

Has anyone experienced similar, and is there anything I can try to get back to normal?!

I had my B12 tested last Wednesday and it came back as 333.

Thanks in advance.

 

[Victronix]

Taking a B-multi was hugely helpful for me to balance out the B-12 -- the agitation and anxiety disappeared immediately. I continue to take Jarrow B-Right 2x/day, although others on here take other types.

Whatever dosage of B-12 you take, it's helpful for it to be a consistent amount. It can take days to over a week to adapt to a particular dosage, I've found.

 

[justy]

Hi Zamora - i'm sorry i dont have any answers for you. For me i had excitotoxicity issues with 500mcg injected MB12 perday. This went away when i lowered the dose to 250mcg per day (injected)

I suggest you start a new thread to ask for help and hopefully someone much more knowledgeable than me will trun up and help you out.

All the best, Justy x

 

[richvank]

Hi,

I've been suffering from Labrynthitis for the last few weeks and in my desperation I took 500mcg of Jarrow MB12 last Saturday (14 July) and 750mcg on Sunday (15 July). On the following Monday my Labrynthitis seemed to dissapear.

But for the next 4 days I felt sick to my stomach with massive anxiety, insomnia and a little dizziness, since then I still have the anxiety, insomnia and a little dizziness today, and it has been a week now since I first took the MB12.

I've been eating bananas and raisins regularly to keep my potassium up.

I've recently been taking TMG, and this seems to be helping a little.

Has anyone experienced similar, and is there anything I can try to get back to normal?!

I had my B12 tested last Wednesday and it came back as 333.

Thanks in advance.

Hi, Zamora.

I suspect that what happened is that the methyl B12 stimulated the activity of your methionine synthase enzyme, converting more of the homocysteine to methionine, and leaving less to enter the transsulfuration pathway to produce cysteine, which is usually the rate-limiting amino acid for making glutathione. Thus, your glutathione level probably dropped, and that produced excitotoxity in the NMDA neurons, because the astrocytes were less able to pump glutamate out of the synapses and convert it to glutamine. The symptoms you described are characteristic of excitotoxity.

I think that you have gotten some good advice in this thread. Adding a B-complex may help, because B6 and B2 are needed to promote flow into the transsulfuration pathway, and B2 and B3 are needed to recycle glutathione. Magnesium may also help, since it is needed for synthesizing glutathione. And I think the advice to lower the dosage of the methyl B12 and come up slowly as it is tolerated is good advice.

You didn't mention taking a folate supplement. I gather that your folate status must have been pretty good to allow methyl B12 alone to stimulate the methionine synthase reaction. But as time goes on, I think you may need to add some methylfolate in addition, to support this reaction. Most PWMEs need to take both to accomplish this.

I recommend working with a physician while on this type of protocol.

Best regards,

Rich

 

[zamora]

Hi, Zamora.

I suspect that what happened is that the methyl B12 stimulated the activity of your methionine synthase enzyme, converting more of the homocysteine to methionine, and leaving less to enter the transsulfuration pathway to produce cysteine, which is usually the rate-limiting amino acid for making glutathione. Thus, your glutathione level probably dropped, and that produced excitotoxity in the NMDA neurons, because the astrocytes were less able to pump glutamate out of the synapses and convert it to glutamine. The symptoms you described are characteristic of excitotoxity.

I think that you have gotten some good advice in this thread. Adding a B-complex may help, because B6 and B2 are needed to promote flow into the transsulfuration pathway, and B2 and B3 are needed to recycle glutathione. Magnesium may also help, since it is needed for synthesizing glutathione. And I think the advice to lower the dosage of the methyl B12 and come up slowly as it is tolerated is good advice.

You didn't mention taking a folate supplement. I gather that your folate status must have been pretty good to allow methyl B12 alone to stimulate the methionine synthase reaction. But as time goes on, I think you may need to add some methylfolate in addition, to support this reaction. Most PWMEs need to take both to accomplish this.

I recommend working with a physician while on this type of protocol.

Best regards,

Rich

Hi Rich,

Thanks for your reply.

I forgot to mention, I did take a B-Complex on the 3rd day, after stopping the MB12 which contains 400ug Folic Acid.

I'm assuming this has helped to stimulate the reaction. In fact, maybe this is what has caused the problem....

I've stopped the MB12 altogether now, as I'm afraid to continue with it.

There is a run down of what has happened so far in this thread:
http://forums.phoenixrising.me/index.php?threads/bad-reaction-to-mb12.18631/

I'd really appreciate it if you could take a look to see if it gives us any more clues.

I've found that TMG is helping me to control the symptoms. But I'm unsure why it is helping and if there is anything I can do to assist it with additional supplements.

Thanks,
Zamora

 

[richvank]

Hi, Zamora.

O.K. I suggest that the combination of the methyl B12 and the folate taken later stimulated the methionine synthase reaction and lowered the production of glutathione. That would cause symptoms of excitotoxicity, which you reported.

I don't understand why the TMG is helping. TMG stimulates the BHMT pathway, which is an alternate pathway in the liver and kidneys for converting homocysteine to methionine. It would seem that this would lower the homocysteine level further. However, it occurs only in the liver and kidneys, not the brain. I'll have to ponder that.

In any case, to calm excitotoxicity in the brain, some people have benefited from taking theanine, GABA, grapeseed extract, magnesium, taurine, progesterone cream (on skin), or Valerian. These are supplements that have been suggested by Dr. Amy Yasko for this purpose. Perhaps one or more of them would help you.

Over time, the excitotoxicity should diminish, so long as the methyl B12 and folate have been discontinued.

If you should want to resume treatment later, I suggest starting with smaller dosages. People vary a lot in terms of how much dosage they need and can tolerate.

Best regards,

Rich