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Any B12/Methylation Doctors?

Discussion in 'ME/CFS Doctors' started by arx, Oct 11, 2012.

  1. arx

    arx Senior Member

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    Hi,
    I want to know if there are any doctors you are familiar with who work on B12,methylation and mitochondrial dysfunction?

    I can't find any doctors here who work on such aspects seriously. They would rather send the patient to a psych ward and convince him/her that 'It's All In Your Head',whereas the underlying problem is not even considered(which appears to be purely neurological in my case,according to me).

    Why is the medical community in such a sad state?

    Why are protocols such as Rich's Simplified Methylation Protocol and Freddd's Active B12 Protocol and the amazing research done by them not taken up by some medical researchers to experiment with,publish papers and allow them to reach the mainstream?

    And when will they really learn that it is not in one's head!
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm not sure what country you are in?

    There are some docs who have either worked with Rich or respect and use some version of methylation therapy.

    Best,
    Sushi
  3. arx

    arx Senior Member

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    Hi,

    I live in India. It's good to know that methylation therapies are being used. Also, I am focusing more on the role of the medical community in understanding the effects of B12 deficiency. After reading Freddd's list of symptoms of cns/body mb12/adb12.. deficiencies, I am stunned how many doctors who I have visited have not even considered B12 and those who have even thought about it, have not associated serious mental symptoms and neurological sensations to be related to B12 at all.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    It's ironic--there are doctors from India practicing in the States who work with B12 deficiencies and even one I know of, who used to work with Rich.

    Sushi
  5. arx

    arx Senior Member

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    That's surprising to hear. Maybe there is less awareness in India as compared to the US. But I've read numerous people from all over the world complaining about B12 diagnosis and treatment methodologies. I had a serum level of around 150 pg/ml with numerous neuropsychiatric symptoms, the range being 200-900 pg/ml. I was given three 500 mcg mb12 injections and told that all is fine now. After starting off with reading 'Could it be B12', then some research papers and finally landing at Freddd's protocol, now the treatment I was given seems absolutely shocking, and lacking insight. Correcting deficiencies on paper does not mean that the neuro damage it has caused in months/years has been reversed.

    Now the serum test seems ridiculous to me.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The serum test is known to be misleading.

    A better test is methylmalonic acid.

    Yes, 3 injections is ridiculous. My doc wants me to inject hydrox B12 every day or other day, whichever I can manage. Have been doing it for a long time.

    Sushi
  7. caledonia

    caledonia

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    The methylation field is very new and would still be considered experimental/cutting edge at this point. It takes something like 17 years for a scientific discovery to get into the mainstream. Your best bet would be to find a holistic type doc or naturopath who is familiar with Amy Yasko's autism protocol.

    Ironically, after vitamin B12 was discovered and synthesized it was common for doctors to look for B12 deficiencies and prescribe B12 injections for all sorts of things. But that knowledge seems to have been lost over the decades.
  8. Crux

    Crux Senior Member

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    Yes, even though B12 is one of the most researched vitamins, it looks to me to be the least understood. I think most doctors are under-educated about it. They assume B12 def. occurs mostly in the elderly,and that it is usually dietary. So, if someone is just given an injection, etc., it will then be stored in the liver properly,and will be distributed properly from then on.

    We understand that this is incorrect, but this ignorance remains. There are many reseachers and doctors who are trying to inform the world about this, but it's slow.

    I can't help but be suspicious of pharmaceutical companies, because... just look at the money to be made from people with B12 def. Antidepressants, Antipsychotics, Stimulants, Pain meds.,heart meds, incontinence meds., hair loss meds, and so on.

    There are websites devoted to B12 def. in addition to here, such as : b12d.org and pernicious anaemia society.org. These people are working tirelessly to inform people.

    There is a Dr. Chandy, originally from India, who practices in the UK now. He is extraordinary. I wonder if any of the folks at those sites know of good docs in India? Have you, Arx, searched the internet for docs who are experienced with B12 def. in India? I understand that it is also prevalent there. Some people have given their docs information they have printed from good research to inform them of B12 deficiency treatment.

    I've gotten a list of doctors from the compounding pharmacy I go to. They may know of someone to recommend to you.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    arx likes this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  11. arx

    arx Senior Member

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    I agree with you totally. Doctors also earn their cut from the pharma companies and from the labs they recommend tests to be done. You will be surprised to look at the sales of antipsychotics and other psych drugs. A multi billion dollar industry and doctors tied to them, it's not really hard to figure out that we are the ones suffering in the name of health care.

    Yes, I have seen those websites thoroughly. b12d.org is Dr. Chandy's website,right?. I have seen his treatment protocol too and the protocols of some PA sufferers. I have tremendous respect and admiration for Dr. Chandy, Martyn Hooper, Sally Pacholok and others who are getting the word out on B12 deficiency. It is only because of them that I took this path.

    Unfortunately, the treatment they have advised did not work for me at all.

    The ones spreading the word have done amazingly with noting down the symptoms and how B12 def. goes misdiagnosed and causes extreme suffering. But their reliance on monitoring serum levels and treatment solely with B12 injections , well, it did not help me. I followed the injection regime as mentioned in Could it be B12, b12d.org, articles ,etc.
    One example is here:

    http://www.b12d.org/sites/default/files/PDF/B12_Deficiency_protocol_2011-05.pdf

    I can't say about others, but when I did not read Freddd's Active B12 Protocol, I thought I would get better in two months or so and many of my neuropsychiatric symptoms would go away. But instead I became worse, and had hypokalemia. None of the sources I was reading up mentioned hypokalemia and worsening of symptoms. It was just taking B12 injections everyday for a week, then twice/week for some time, then fortnightly and so on... and thought I would be fine.

    Then I found Phoenix Rising and Rich's and Freddd's Protocol. Now after being on Freddd's Protocol for some months,reading nearly all posts by Freddd, and still experiencing worsening of symptoms, especially after adding adb12 and carnitine, my entire mindset of treatment has changed. From "I'll take B12 shots for some months and get better", my understanding of treatment has changed to:
    "
    -Taking supplements for methylation and mitochondrial dysfunction.
    -Worsening indicates extreme deficiency and careful titrations need to be done. Need to bear the worsening.
    - New symptoms and worsening of existing symptoms relate to neurology 'waking up'
    -A very slow process, could continue for the next 1 year at least.
    -Methylation startup and ATP startup, which causes an extreme increase in symptoms, sometimes out of the world intense.
    -Increased need of methylfolate and potassium, and monitoring needed.
    "

    I might be on the wrong track ,still, when I look back and see protocols which recommend B12 injections and folic acid, and after trying that and getting no results, well, I still feel that treatment protocols are not being researched as extensively as the word on b12 information,misdiagnosis,symptoms etc. I have still got no results so I can tell myself that Yes,this is working towards a positive destination. There are some symptoms which are much better and there are a lot more which become better,then get worse(rounds of healing?)I do have faith in what Freddd has written.He has written that all this will happen. To be specific, from what I have suspected from his posts, I belong to the category of the ones who are hypersensitive to carnitine with anxiety as the major symptom, with spine and brain involvement with little body involvement.I will surely go ahead with his protocol once I feel I can bear the suffering again for months.

    I have searched the internet for doctors specializing in B12 def. treatments, but I couldn't find any. I know some neurologists and general practitioners who even after considering that symptoms relate to B12 deficiency(which is amazing in itself), give some injections/multivitamin pills which have negligible absorption when compared to sublinguals, and that's it. I don't think the underlying neuro damage that B12 deficiency/blocks in the methylation cycle have caused are just going to go away with some injections or pills for a month or two. If at all healing has to take place by B12 and many other supplements, one has to follow an aggressive protocol with many supplements and much higher dosage than what is recommended by the medical community. Freddd himself has said that after one adds carnitine, 50 to 75 percent healing takes place in one year. That is a lot of time to bear the effects of supplements, as reaching the point where I could add carnitine took me a lot of months.


    Thank you Crux. I have stopped the protocol for now as I got much worse(because I got impatient and didn't titrate the carnitine properly, causing a wide range of mental effects and causing a lot of frustration and despair). I am in the process of getting some tests done and consulting some doctors. Once I am done with whatever they have to offer and if their treatments do not work out, I will come back here and ask you guys for help if required.
    taniaaust1 likes this.
  12. arx

    arx Senior Member

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  13. arx

    arx Senior Member

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    Hi GG,

    Thank you for the support. I'm in the process of getting some tests done and consulting some doctors I can find here. This will take some time. When I'm done with all this, I will contact you if required. Thanks again.
  14. Crux

    Crux Senior Member

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    Hi Arx;

    It's been just terrible to read about your suffering through this.
    I think you are wise to rest the protocol for now.
    I wonder if a more pared down version may be better for you in the future. For instance, I found that adB12 actually irritated my nerves, so I've suspended it . ( I'm not sure that I will even need it, maybe I make it from mb12).

    I cannot tolerate Carnitine either now. Many supplements, including carnitine, are too acidic, and they irritate my damaged nerves.

    I take a very low dose of B complex, B1 and B6 specifically, also irritate my nerves, causing pain.

    Folate is powerful, and some people may not need as much as others, at least in the beginning. ( I've had serum folate measured twice. The first time was in early 2011, and it was above measurable range. I was only taking 400 mcg. daily, of an active food based type. About a year later, folate in serum was measured again, and it was in the high normal range, even though I had been taking higher dosages.

    So I think that my folate was bunged up in the serum, and that it took some time for the B12 too help me utilize the folate. Before that, when I had tried to increase folate, it was too stimulating and irritating, my insomnia worsened.

    So, I wonder if when you chose to reapproach or create the protocol that best suits you, maybe , try B12 in lower amounts alone for a time, without additional folate, without adB12, without carnitine, to first heal the nerves.

    Meanwhile, consider increasing Potassium in the diet, along with other minerals that may be calming. I have found Zinc to be extraordinarily calming, even sedative. ( If I take too much, it increases my fatigue, so I think it needs to be monitored. ) I also take Niacinamide for its calming effects. (I only take 250 mgs. nightly before bed, some people take more, but too much for me brings nausea. )

    I feel that we need to develop our own personal protocol when we find that certain standards haven't suited us. Although, this process can be the very most difficult of all, I believe it may be the potentially the most successful. It requires us to be utterly self -observant, but not self- obsessed. And I haven't found anything in my life to be more difficult or painful than this. But, I haven't found anything else more effective in relieving pain, than this process.

    Arx, please stay in contact, You've made many enlightening contributions here... Thank You...
  15. arx

    arx Senior Member

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    Hi Crux,

    Thank you for your support. I will consider a new version of the protocol. I have experienced irritation of nerves from mb12,adb12 and carnitine. I want to share with you my experience on the protocol in short.

    When I started off with mb12, it made me extremely wired mentally and lots of physical sensations(most intense in spine and brain). But after three months, some symptoms had healed. I reached a comfort level with mb12. So I decided to add adb12. Again, I had a very strong reaction to adb12. I did not and still don't know the dosage which Freddd has recommended. But I tried out random dosages of the Country Life Dibencozide and reached a level where I could tolerate the then protocol. Now I decided to add carnitine. I started off by taking 1/15th of the 500mg Doctor's Best Acetyl-L-Carnitine(ALCAR) capsule and had an 'out of the world' response. Symptoms which I thought had healed after mb12 reappeared with pretty much a tenfold increase in intensity. It was too much to bear mentally and physically. I read the 'Hypersensitivity Identified' thread and my private chat with Freddd who had pointed out that adb12 and carnitine are essential with a careful titration. So in some weeks I had reached a level of 3/4th of the ALCAR capsule, but I was getting worse. I was taking the carnitine everyday, along with 2000 mcg of mb12 and around 750mcg of adb12. I have experienced the need to increase methylfolate and potassium on two occasions:
    1. After adding adb12 to the protocol
    2.After adding carnitine to the protocol

    To my surprise Freddd has mentioned this very increase in the need of folate and potassium as a sign of healing.
    As a fellow traveler, I have some questions which I want to share:

    1. Doesn't the nerve irritation indicate the very deficiency of the supplement causing the irritation?

    2. You say that you can't tolerate Carnitine now as it irritates you a lot. It has always irritated me, that is why I considered a slow titration,even though dropping out of it after some time. How does one know the correct moment to add carnitine/adb12?

    3. My understanding has divided the damage in two parts: neurology affected by mitochondria and neurology not affected by mitochondria. The methylation supps will help in healing neurology not affected by mitochondria. Things that produce ATP: adb12 and carnitine specifically, are also equally responsible for healing those damaged nerves,right? Won't the damaged neurological areas be healed by the very supplements irritating them? Isn't this what Freddd means, to not avoid whatever is irritating but try to tolerate it with careful titrations, as that irritation/sensitivity indicates the deficiency of whatever is causing the irritation/sensitivity?

    4. What should be the adb12 dosage? I remember reading taking the sublingual daily then once a week or something. I'm not sure as it has not been mentioned specifically by Freddd and others who are following his protocol.

    5.Please share your dosages of B1 and B6. Also, what forms of these vitamins do you take?

    I agree with you. I didn't pay attention to folate in the beginning. Here in India there is a 7.5 mg L-Methylfolate tablet which I have cut into many parts. I have found the need to increase folate on two occasions as mentioned above. The serum test which you mention, is it the serum folic acid level?

    I had the same experience. Before adb12 and carnitine when I increased my folate,I got bad headaches. Maybe the B12 utilized it over a duration of time,as you mention.


    I have thought of doing exactly the same. Start with mb12 and add adb12 and carnitine in a much gentler fashion than I did this time. Folate and potassium needs will be reassessed when another supplement is added after mb12, and sometimes in between.

    You say try B12 alone for some time to first heal the nerves with B12. Doesn't healing the nerves require the additional folate,adb12 and carnitine ?
    As I have described my experience above, I thought that my nerves in the spine had healed with mb12. My intermittent pain and continuous buzzing,vibrating,twitching,stinging sensations in my spine had healed 80 percent with mb12. After adding adb12, they came back again, but it was bearable.But after adding carnitine,it was a very very extreme response . I went from saying that "it has healed"(after 3 months of mb12) to "it has become ten times worse of what it was before the protocol"(after carnitine). The sensations had come back so strongly that some nights I spent sitting because I couldn't lie down. This is why I suspected rounds of healing, and that everything is needed, things that make ATP, things that provide myelin sheathing, and other methylation supps. I think everything is needed and healing takes place in rounds. But yes, I will go very slowly, get saturated with mb12 for some weeks, then add adb12 and carnitine in slow amounts.

    Yes, potassium helps a lot. I take around 4000 mg everyday now. The Potassium Citrate solution which I have found is extremely useful. I haven't considered Zinc seriously. How much do you take? I take 25 mg twice/thrice a week. Niacin is also good, provides calmness at times. Around 125 mg suits me. It's good to see that Zinc,Niacin and other minerals are helping you.


    Agreed. Custom protocols are the only way out. I feel really happy for you that you have found this to be effective in relieving your pain.

    This process feels like the most difficult thing. Playing scientist and the lab rat being one's own body and mind is a very hard task. The severe brain fog and mental agitation makes it seem like impossible.
    On a personal level,it is a very difficult test of patience and persistence for me and I think for everyone on such protocols. The hardest part for me is the enormous courage required and the isolation that goes along with it. I can't explain things to my friends and don't have the time and energy to even talk to them most of the time. Taking so many supplements and facing varying effects from them every single day, there is no time and health to get out of the house and meet friends and family. And all this could go on for an year. Conversations with people provoke questions from their side about my health and treatment, which is almost impossible to explain to them. Instead their concerning questions provoke anger in me. This phase of my life seems like a renunciation from studies,friends, and the world outside, into the challenging world of this process.

    The only support and source of information has been from the members of Phoenix Rising. Thank you Crux for your support and contributions. I look forward to more discussions. :)
  16. Crux

    Crux Senior Member

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    Hi Arx;
    I will do my best to try and respond to your questions, but my answers come from my own experience, and possibly other folks. So some things may apply in your case, and others may not, But I think it's helpful for people to share their results, positive or negative anyway, even if they don't comply with research and testing, professional or otherwise.

    If I miss a question, or misunderstand, go ahead and repeat it, I'll try again.

    With the nerve irritation that occurs with some supplements, as in the case of adb12 and Carnitine, I personally find that they have been irritating in a negative way, they have not helped my healing. ( But other folks have responded well to them.) I've tried several types of each with the same negative results. ( I even cringe a little about trying them again.) I recall that the pain from them was different, more intense and concentrated to specific areas. It wasn't the diffuse,mild tingly pain of nerve healing that I had with mb12.

    So, I'm not sure that I will have a correct moment to add them again. I may not need them as a supplement. My nerves seem to be healing well with mb12.

    Although it's been suggested that these cofactors are necessary for healing of nerves, I think that some of them just may not be necessary for everyone.

    I know that Freddd has written directions repeatedly, but danged if I remember where. It did seem that he encouraged people to find their own needs for amounts of adb12. I think he had reduced his intake as well. I remember that some people had more trouble with mb12 than ad12. ( But I'm opposite.)

    As for B-complex, I take New Chapters Coenzyme B Food Complex. ( iherb sells it ) It's expensive, but I only take 2 daily. This would include 5mgs. of B1, and 9mgs. of B6. One thing that is interesting about it is that the folate in it seems to be some sort of active type. I assumed that it was folinic acid, being a plant base, but once when I tried folinic acid to increase folate, I tanked and became more fatigued. So, there must be something " active" about the folate in new chapters brand. I also take extra folate from Solgar's metafolin, methylfolate.
    ( For extra B's, I take unfortified nutritional yeast, whole foods brand, no problems with it.)

    The serum folate test is the least sensitive and the least telling, especially compared to the tests people have here, but it's all I've done. I thought I would bring it up to you as an example of how B12 may require folate in the future, and that they do interact.

    So, personally, I feel that B12 and folate are formostly required for nerve healing, and that for myself, for now, adb12, and carnitine are not necessary.

    I'm not sure of all the mechanisms of zinc and niacinimide, but some research indicates that they may be involved with GABA , either formation or receptors. ( not sure) I take them in the evening, for sleep, anxiety, etc. I feel that there could be some opposition between zinc and B12/folate, so I take them separately. I have even had a bit of a "hangover" from zinc, similar to that of benzos. ( But I have been helped greatly by it.) I've increased it these past few days, because I've increased mb12. It helps with start up effects along with potassium. But I'll reduce it once I become used to the increased B12.

    I understand the difficulty explaining this process to others. Although, my so-called friends weren't interested. I've withdrawn from unhealthy relationships. But many people who care may be interested, I think a very brief explanation may be in order for them, then a change of subject. I tend to use humor alot, sometimes too much.

    Well, I've prattled on alot, I hope there's some useful info. here.
    alice likes this.
  17. arx

    arx Senior Member

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    Thank you for replying,Crux. It is always good to know others' experiences as it helps build a better understanding.

    When I started off with mb12, it irritated me a lot. It was after 3 months that I felt some relief. So initially it was negative, very negative, then with time it got bearable and some healing had started. For how long did you try adb12 and carnitine?

    I also fear starting adb12 and carnitine. Carnitine attacks my spine and brain, which happen to be my most affected regions. I wonder if this very negative impact and irritation leads to healing. According to Freddd it is, but it is unbearable. I really hope Freddd gets well and then I am able to interact with him.

    As of now I'm on a very light protocol, taking 2mg of mb12 and some other co factors everyday. Meanwhile I'm meeting some doctors and getting some tests done.They are disregarding my symptoms as a cause of B12 deficiency.Lets see what happens..

    Yes, I agree. Everyone is different after all, and may require different things and amounts of supplements for healing. I would not like to take carnitine again,it is hell for me. But when my father took it and experienced nothing, with me having an extremely intense response, if Freddd's understanding is to be applied here, it means that I require carnitine. I guess we'll have to keep experimenting. I feel like I'm playing lab rat with myself. It's good to know that you are healing with mb12. :)



    I've taken 25 mg Zinc on three occasions, two of them making me nauseous and one giving me a hangover, as you have experienced too. I keep playing with Niacin also. The flush was interesting and quite unpleasant to experience,but Niacin has some relaxing qualities. It makes me hungry too! I think I'll titrate the Zinc, because many have mentioned its benefits.

    Thank you so much Crux for taking the time to answer my questions. Your replies have been very helpful to me. :)
  18. Crux

    Crux Senior Member

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    Hi Arx;

    I first tried L-Carnitine about 7 years ago....It was recommended by a nutritonist in a natural foods store, for my heart palpitations. It worked well, but I was having to take alot throughout the day to stop the palps. ( It was jarrow's liquid , L-carnitine tartrate, I believe.)

    About 5 yrs. ago, when the neuropathy was at its worst, I added Acety-L carnitine because many sources recommended it for neuropathy. I don't remember having trouble with it then either, but I was taking a ship load of supplements, including mb12.

    In the past 1-2 years, I've had to isolate some supplements, because some were causing nerve pain. Unfortunately, carnitine was one of them. I really wanted to take it again, largely because of Freddd's great results. I've tried L-carnitine fumarate and Glycine Propionyl-L-Carnitine as well. I've found that I'm sensitve to acidic foods and supplements, so I'm forced to moderate the quantities of them. For instance, I will have nerve pain when I have too many naturally fermented foods.

    I think we may have more nerve damage than other people, and that may be why we have nerve pain from even beneficial supplements.

    I'm not sure why adb12 causes so much pain for us. Maybe we need more time to heal with the use of mb12 ? It's been a couple of months since I've tried it. I'm going to wait longer. I've been increasing mb12 to 15mgs. daily now, because some neuro. symptoms recurred. This is helping alot, along with time. ( Time is my bitter pill.)

    As for zinc; if it is causing too many side effects, it may not be necessary for everyone. The nausea from zinc may be a result of zinc's cortisol lowering properties. With low cortisol, there is low stomach acid and nausea.
    Too much zinc can lower copper too much, and cause neuropathy from copper deficiency.

    I've found that taking some zinc has helped with some of the start-up effects with mb12 and folate, but too much of it may interfere with mb12/folate,I suspect. I still take 15mgs. each evening for sleep and anxiety, but if I take more....then there are side effects. I take cortisol for pituitary/adrenal insuffiency, and have felt zinc's cortisol lowering effects.

    I agree that niacin is very calming. I can't tolerate the flushing. But the flushing is supposed to aid circulation. I'm going to coast along with niacinamide, for now.

    It seems there are very few docs who understand the vast activity of B12. When people present with so may negative symptoms, doctors can make incorrect assumptions. They really need to take a seminar on B12 alone. Maybe then, they would understand better that every system in the body is affected. I know it's hard to believe, I have trouble myself. I suppose it would help them to understand if they could just feel what it's like for 5 minutes. But maybe that's too cruel.

    Thanks Arx ! This discussion helps me too!
  19. arx

    arx Senior Member

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    Yes, Freddd's great results and insistence on adb12 and carnitine is what will make me go for it again, if at all I do. I would like to share some more observations with you.

    My major symptom was sensations in my spine and brain which I can describe as vibrations,tingling,buzzing,stinging,twitching sensations. This is the only major physical symptom. All other symptoms are mental. So the mental symptoms, which include anxiety,irritability,inability to focus, fatigue, cognitive problems and so on. When my crash occured, I explained the process(the crash) to others as an electrifying sensations in my spine reached my head, and then BAM! My mental state had changed. My perceptions, the way I absorb and respond to my senses had changed, and my entire thought process had become distorted. I had to leave my university. It was 11 months back. One month to go and I shall celebrate its anniversary.

    Anyways,what I'm saying is that I feel the neuro damage in my spine and head, causing the wide variety of mental effects. I didn't have pain as a symptom. But sometimes those sensations in my head would be painful, but more than that they made me feel dizzy and I still feel very disgusting when I get those in my head. I have to stop all activity and relax my entire body when those sensations take place in my head.

    The pain which I got started after adb12 and carnitine. I get pain, here and there,but it is not as intense usually.It is more like intermittent and random pain. Headaches are very common,though. Still, I guess those sensations signify neuro damage too, but maybe more towards demyelination rather than damage that causes neuropathic pain,like in your case. I get pain, I do, but most of the time I can manage. But sometimes I get something like a cramp,but not in my muscle, but in my nerves. Like nerves contracting and stretching. I also get pain randomly in my neck nerves,then sciatic nerve, then somewhere else in minutes of each other, and the next minute they'll go away. It comes and goes...

    When I started off with mb12, I had increased to 5 mg everyday and was having no startup symptoms after 3 months or so of mb12. I thought I was healing then. After that when I added adb12, carnitine and left it now, I am sensitive to mb12 again! A 1000 mcg of mb12 again produces intense startup, mostly in my spine and head. I'll also keep away from adb12 and carnitine for now and reach a comfort zone with mb12.

    I took about 10mg one day and felt terrible mental effects. Intensified wired and tired fatigue,insomnia,frustration,etc and intensified nerve sensations too. So maybe I'll keep the mb12 around 3-5 mg for now when I decide to start.
    Have you experienced over-stimulation or pain from high doses of mb12?

    And yes, time! This is such a slow process! (I'm actually listening to 'Time' by 'Pink Floyd' right now, good timing!)


    Yes,thanks for reminding me. I've read about zinc lowering copper. I got my iron blood tests recently and I was deficient, went from 130 to 60 something in 3 months time. I'll start taking iron and copper in some quantities, alternating with zinc.


    I'll try to divide my dosage too. Thanks for the tip. Have you got your cortisol levels checked? I recently got them checked(morning and evening) and they were in the reference range. Although adrenal insufficiency might be there and I guess it takes multiple tests to get the proof of it in a lab report.

    Yes, they seriously need a seminar on B12.

    I've told people the exact same thing. Most of the time I didn't and don't have the mental energy to think properly and explain things, so I used to tell them if they could feel what it is like for 5 minutes. It is cruel, but where I am physically and mentally at that time(and most of the time), it does seem like an appropriate response. I feel intense rage and frustration when I take carnitine. I have to tell those around me to please keep away from me because I feel so and so. I might have isolated myself hundreds of times in the middle of social interactions during the course of all this. There is a lot of change in my behavior after adding carnitine. It is exactly what Freddd mentions in the 'Hypersensitivity Identified' thread, a tour of the limbic system. Unfortunately experiencing what mental effects he has written is a different reality altogether. It is horrifying. Add to that the nerve pain and sensations, it becomes too much.

    Please bear with me if I have repeated the same thing again, because I don't remember what I wrote in my previous posts.
  20. Crux

    Crux Senior Member

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    Hi Arx;

    I agree that the large variety of symptoms you are having are neurological, and that the sensations can occur any where that there is a nerve. So that means everywhere. I even had a period of having optical neuropathy, it felt like little shocks skirting across my eyes from the outside in. I thought of lightening when it happened.

    I don't remember if you've had an MRI. Sometimes lesions can be detected by a well trained Doc. It looks like the technology still isn't sensitive enough yet, many people with neurological symptoms have been found to be normal with an MRI. Mine was deemed normal.

    Strong symptoms in the spine and brain may indicate Subacute Combined Degeneration of the Spinal Cord, (SACD). If you are going to meet with a neurologist, maybe this phenomenon should be discussed. My Internist and Endo wanted to refer me to a neurologist, a good idea, but I was stubborn and silly, didn't want to see anymore docs, and assumed that a neuro would just ply me with pain meds. But I understand now that there are some neuros who are educated in B12 deficiency. At that time, I was beginning to understand and feel the effects of B12 anyway. But I would still recommend finding a doc who understands B12 def. I think it may be more difficult to find one who understands methylation, though.

    I think it is an excellent idea to suspend the use of carnitine and adb12. They may not be necessary, the side effects you are having from them do not seem at all positive to me. If anything seems to interfere with the healing that mb12 has done, especially if it has caused mb12 to be problematic, I would stop taking that substance.

    Recently, when I've been increasing mb12 and folate, I've again had start up effects. They weren't as strong as in the past, but they were still uncomfortable. ( mild headaches, anxiety,busy thoughts, sleep delay, a fluey feeling). I don't believe that start up should be allowed to be unbearable. One could titrate very slowly, as Freddd has suggested, or one could try pulse dosing : Say, 2 days on, 1-2 days off of the increased dosage.

    Again, I don't believe that it is necessary to make ourselves feel freaky-bad to get better.

    I'm glad you don't have a cortisol problem. It can be a big drag, I tell you. I've found the serum cortisol tests to be accurate in my case. But, unfortunately, I'm just not making any. But still ,thanks to the B12/Folate, I haven't had a crisis, and near crisis in over a year. I've been able to reduce the cortisol dosage as well. I'm getting fewer infections. Good News.

    Isn't Pink Floyd's music still fresh? I still love it. I've wondered if part of Syd Barret's health problems were that of a B12 deficiency. ..

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