BUT since studies show that CFS patients also have high homocysteine in their brain and cerebral cortex fluid, it also means that they still lack methyl cobalamin for other unknown reason, since not all the CFS patients have vitamin D deficiency.
You are right @Helen. That's the case normally. And also chronic kidney and heart conditions rise up homocysteine level.
But in a pilot study of 12 CFS patients, the B12 level in their blood was normal but in cerebrospinal fluid it was low. Also in the same study homocysteine level in their blood stream was normal but in their cerebrospinal fluid it was low.
I actually remembered wrong. There is no study about the homocysteine in the brain of CFS patients. But something that may help us understand the situation has been found from people with dementia. Since methyl cobalamin helps with cognitive problems of many CFS patients, and as it is known that high homocysteine level in brain contributes cognitive problems, it can be hypotesize that brain also lack methyl cobalamin. According to a study, patients with dementia had high homocysteine level in their brain.
Hi from Sweden! Have you found out how much adenosylcobalamin you need? I use transdermal oil, but I have big problems with absorption. The oil and b12 stays at the surface of the skin, no matter how much I rub. I absorb much enough to have a reaction (and it seems like symptoms get better, like cogwheel rigidity, numbness, diaphragm dysfunction, partial paralysis etc...but the effect doesn't last very long), but not sure how much...and if it's a waste.
So I think about ordering adb12 ampules from Germany to see if there is a difference, but not sure if I should order 1mg or 10mg. 10mg seems to be too much, but cheaper if I can split the amount in the ampules (open in a dark room and cover with something maybe).
Do you still have success and how much do you use??
@mina, yes I have. But before I tell you my dosage, I have to tell you this: I don't get the same effect without injecting methylcobalamin too. I need them both.
Methylcobalamin: 5mg (milligram) once every eight days.
Adenosylcobalamin: 1mg once every four days. I am going to ask my doctor to prescribe 10mg ampoulles, because 2 x 1mg (for about one week) is more expencive than 1 x 10mg. I wonder how adenosylcobalamin stores into cells. I hope 10mg would be enough for even two weeks. I will get my next ampoules in the beginning of January.
There is also another option: adenosylcobalamin nose spray in Arnika Apotheke, Germany. One spray to both nostrals equals 400 micrograms. Arnika Apotheke says that it aprobs better than tablets. I am going to try that if my doctor allows. You don't need a prescription to order adenosylcobalamin nose spray but in my country (Finland), it may be wise to have a perscription because I don't know if this product is allowed in Finland without a perscription. My interpretation is that one needs a perscription for customs but I am not sure.
@mina, Arnika Apotheke says, that they don't quarantee that adenosylcobalamin is safe to use more than 24 hours after opening the ampoulle. I had the same idea, that I could spit the dosage to two 5mg dose and I asked but they said NO.
@mina, by the way, I first injected both cobalamins to my muscle but later I changed to subcutaneous injections because they are much easier to inject. Smaller needle and less pain and less nervousness and less stress from injecting. The effect will star a bit later but it also remains in my body for longer time so I don't have to inject that often.
@Johannes Thank you! I get methylcobalamin from the pharmacy here in Sweden! Right now I use transdermal with more nadeno than methyl and it seems like I do better with more adeno than methyl, but...I don't absorb all of the oil. I guess I just have to try and see what i need, but 1 mg is a good dose to start with.
My genes looks good. No important mutations.
I contacted Arnika this week but have not ordered yet. But now I think I will choose 1mg. Maybe I find that I need 10mg less often...but I try 1mg first.
Just for information, injecting anything for the first or second time, one should do it somewhere, where epinefrin (adrenalin) and health care personal are readily available. Some injections may cause anaphylactic reaction. Some may cause it when you inject for the first time. Some, when you do it for the second time. Just that you know.
This is correct, but it is mainly a concern for most IV injections. It is much less likely for many IM or subcutaneous injections, including vitamins. Generally, anaphylaxis or severe allergic reactions are very rare for vitamins.
Here some observations concerning methyl and adenosylcobalamin injections.
Helps with ability to concentrate and maybe improves a little my memory. Doesn't help with my muscles and doesn't give energy to my brain. Doesn't help with headache or other MCAS of CFS symptoms, not atleast after four injections. 5mg shot once in seven days. It seems that in my case I can inject maybe once in two weeks, since there are no symptoms coming back with during those seven days.
Helps even more with ability to concentrate and learn and also helps with remembering things. My brain fog is totally gone after the first injection. It is wonderfull to see the world like a normal healthy person sees it after almost eight years with brain fog. I have gene mutation called COMT 472A which may hinder my dopamine, epinefrin and noradrenalin production causing also higher levels of homocysteine in brains. Adenosylcobalamine injection has also affected to my dopamine production since I now have felt happyness, which I haven't felt for a long long time. I have now only injected once 1mg and that was three days ago. I can ztill feel happyness and no brain fog yet. This cobalamin didn't help with other symptoms, atleast not yet.
After having injected now about 20 weeks with methyl cobalamin (5mg weekly) and adenosyl cobalamin (10mg every two weeks), I can see further improvement in my cognitive functions. My long term memory now works well. I can easily speak and think and my vocabulary is back to normal. I still have problems to concentrate if I stress my brain too much. And I have no brain fog as I told earlier. I may change my dossage. It may be that I inject too much adenosyl cobalamin, but I don't want to change anything now, because I have just changed my vitamin D dosage. Maybe later in Aprill.
You might find that Greg's transdermal B12 oils are more convenient than injection, and may provide a higher dose as well.
The methylcobalamin + adenosylcobalamin oil contains 1800 mcg adenosylcobalamin and 700 mcg methylcobalamin in each dose, and the estimated transdermal absorption is 80% (facilitated by microemulsion technology). More info here.
Thank you @Hip , but not for me. Transdermal vitamins cause my bowel to inflammate very badly and a fever. According to my doctor, I will get bowel cancer if I continue to use them. But I have no problem to inject my self. I do it subcutaneously with very thin needle. It doesn't cause any pain.
However, there is another efficient way to absorb cobalamins, which is causing problems to me as well. Nose spray. Arnika Apotheke in Germany manufactures them. No preservatives, just pure vitamin.
Thank you for the update! Really interesting to hear that you take adb12 every second week only... I use b12oils, but have big problems with absorption (seems like I am the only one who don´t absorb the oils well, they just stay at surface of the skin....have tried it on many people and the oil disappear within seconds. I must have a very special skin/fat type). I absorb some of it and I hope it´s enough to help me, but I have been thinking about trying ad12 injections. Just to be sure that I don´t miss anything...and see how I feel from them. I was hesitant because of the price, but if I don´t need them so very often, it´s more affordable...
@mina The need for adenosylcobalamin is depending of the patient. I don't have a genemutation that would effect methylcobalamin changing to adenosylcobalamin or adenosylcobalamin changing back to methylcobalamin. These genemutations would have an effect on the need of adenosylcobalamin. So these cobalamins can freely change into each others in my body, except that they don't, because I have CFS. That is, because I lack energy in cellular level. But I do have two genemutations which have an effect on my methylcobalamin activity which influences my need for adenosylcobalamin. I hope this is not too confusing.
I believe I need adenosylcobalamin because my CFS causes my cells to produce too little energy for my body to change methylcobalamin into adenosylcobalamin. Also, as my brain would contain too much homocysteine, with out methylcobalamine injections (because of CFS), it also means that there is a problem in my entzymes that change methyl cobalamin to its active form causing a lack of methylcobalamin and therefore lack of adenosylcobalamin. So I inject both cobalamins.
So I have couple of genemutations and a CFS which have an effect to my dosage.
I have noticed that the bigger the dosage of methylcobalamine, the less adenosylcobalamin I need and vice versa. But in my case the dosage is also depening of my energy level. When I get enough sunshine including vitamin D, I become more energetic and need less of both of these cobalamins. I didn't use them at all last June and October and felt fine. But I am a special case what comes to vitamin D. It seem to have an effect to my MCAS as well.
It depends also why you need cobalamins. Because I have COMT 472 AA genemutation, I have problems with adrenalin (epinephrine), noradrenalin, dopamine and maybe estrogen production. Methylcobalamin is one that helps normalize the production of these and also magnesium may help. So, this would mean that adenosylcobalamin dosage could change if I could start to use magnesium, which I haven't fully tried yet.
These things are a little bit too complicated to understand. I am learning as I try and read more.
By the way, I inject 10 milligrams adenosylcobalamin now every three weeks but I think it is not enough.
@Johannes Thank you! Yeah, we are all different, and all I can do is to try and see what works for me My methylation genes looks very good, no important mutations. But I still have big problems with methylation... ( but not the only problem) My OAT test showed that I was severely deficient in b2 and when I started b2 I was very much worse for the first month. Extreme weakness, could almost not use my muscles...felt like my mitochondrias shut down after every dose and I guess it took time to adapt.
After that I started to include other b vitamins and same things has happened after each one of them, with different symptoms for each of them, like increased tremor and cogwheeling, weakness, spasticity, dysautonomia, breathing problems, nerve pain etc. I have stayed away from b vitamins for a long time, because everytime I started I have felt so extremely worse, but after the experience with b2 (and when I started to feel better from it after a month), I have realized that it´s the way my body responds, until it adapts. I am extremely sensitive and react to everything, so It´s always hard to know if it´s good or bad.
Same thing happened when I started b12 oils, but it seems like that the good effects doesn´t last very long time after each dose, so I wonder how little I really absorb. So that´s why I want to try the injections and see if there is a difference. Maybe I just not will have more effect, or it will take time, but it feels like I take a risk if I don´t try and see if I get better effect from injections. I have used mb12 injections before, but that was before I fixed b2 etc, seems like I could not tolerate b12 at all before that. And I can get mb12 here in Sweden.
So yeah, I'll try and see If no difference I guess and I can stick with oils.