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which B12 to start with?

Messages
54
Location
Australia
I have the methylation supplements and ready to go. But...after 30 years very ill and bedbound and getting worse, I now cannot tolerate most vitamins and other supplements.
I want to try it though. I wonder if its best to start with the sublingual jarrow b12 for a while and see how I go and then in what order the actifolate and Intrinsic B12 folate? I definitely
cannot take the multivitamin or phosphatidyl serine and wonder if I should even bother with the protocol when I can't balance the supplements properly? Any ideas?
Note
my cognition is extremely poor these days.

Anne
 

FunkOdyssey

Senior Member
Messages
144
I've never been quite sure what the phosphatidylserine is for but it doesn't seem to be remotely central to the methylation cycle block - glutathione depletion theory, nor is it even mentioned in Fredd's similar protocol which is at least as effective if the polls on this forum mean anything. So, I wouldn't let a lack of phosphatidylserine concern you. High dose B12 and folate are the big players.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have the methylation supplements and ready to go. But...after 30 years very ill and bedbound and getting worse, I now cannot tolerate most vitamins and other supplements.
I want to try it though. I wonder if its best to start with the sublingual jarrow b12 for a while and see how I go and then in what order the actifolate and Intrinsic B12 folate? I definitely
cannot take the multivitamin or phosphatidyl serine and wonder if I should even bother with the protocol when I can't balance the supplements properly? Any ideas?
Note
my cognition is extremely poor these days.

Anne

Hi Anne,

I would suggest you start with the 1/4 of a 1mg Enzymatic Therapy or Jarrow 1mg and put it under the upper lip for as long as it can possibly last. This will provide plenty of "kick-start" for your body. This will remove the mb12 from being a limiting factor. The problem is that it may start massive healing which is almost certain to induce other deficiencies. Keeping the dose relatively low will limit how much of your body tries to heal all at once. Assuming lack of b12 is your problem, your stomach may become far more tolerant of other vitamins and such relatively quickly. It is important that you have a potassium supplement, OTC or prescription on hand as potassium levels can plummet in only a few days and that can even be potentially fatal. It can cause spasms that make it impossible to go get the potassium if it hits in the middle of the night.

I would suggest that the next thing to add is b-complex. B-Right is a good one and there are others. Metafolin or whatever brand is probably next followed by adenosylb12. All of these can be started in small doses and worked up on the dose. All but the sublinguals can be taken with food to minimize stomach problems. It's probably a good idea to get a balance going before increasing the dose of the first item.

I had been terribly debilitated for 17 years and barely able to literally crawl from bed at the worst and had lost the ability to focus my eyes much of the time leading up to the mb12. I felt onset in 5 minutes and massively better in an hour after starting mb12. I also suffered a potassium crash 3 days later even taking a low dose as supplement.

Good luck.
 

LaurieL

Senior Member
Messages
447
Location
Midwest
Freddd,

I am confused. I could of sworn at one time you recommended starting with adenosyl B? I have a friend wanting to embark on this journey and now I am concerned I may have told her wrong?

Laurie
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd,

I am confused. I could of sworn at one time you recommended starting with adenosyl B? I have a friend wanting to embark on this journey and now I am concerned I may have told her wrong?

Laurie

Hi Laurie,

That was in response to one specific person's question and as a speculation that it might dcrease the intensity of mb12 a couple of days later.. In a general sense, starting adb12 1 -3 days ahead of mb12 will remove one layer of possible start-up response as the startup response to adb12 specifically is usually limited to a couple of days. It was meant as a way to try to decrease the "all at once" startup response of mb12 just a little bit. It probably makes 10% difference for 10% of the people. It isn't a big thing and BOTH in balance, are needed for the long run. Mb12 is used in 600 or so reactions. Adb12 is used in 2 that I know of, only one of which can be felt quickly.
 
Messages
54
Location
Australia
Just what I needed to know Fredd. Didn't know about the possible pottassium loss.

20 years ago had monthly vitamin B12 injections(cytamen) with no ill effect but lots has changed in me since then. At that time blood tests through Dr. Les Simpson here in Oz showed that my mishapen red blood cells could not be made normal by b12 even though other cfs/me sufferers such as my mother's could. In my case it was fatty acids that helped the red blood cell's shape to normalise. However I can no longer tolerate fatty acids.

Nevertheless, apart from that, in years past glutathione and molybdenum supplements have helped especially in my continual immune responses to frequent viral infections but now that I can no longer tolerate them I will give this methylation support protocol a try. And hope the detox is not too severe.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Just what I needed to know Fredd. Didn't know about the possible pottassium loss.

20 years ago had monthly vitamin B12 injections(cytamen) with no ill effect but lots has changed in me since then. At that time blood tests through Dr. Les Simpson here in Oz showed that my mishapen red blood cells could not be made normal by b12 even though other cfs/me sufferers such as my mother's could. In my case it was fatty acids that helped the red blood cell's shape to normalise. However I can no longer tolerate fatty acids.

Nevertheless, apart from that, in years past glutathione and molybdenum supplements have helped especially in my continual immune responses to frequent viral infections but now that I can no longer tolerate them I will give this methylation support protocol a try. And hope the detox is not too severe.


Hi Anne,

If you have read much here you find I suggest both omega3 oils and lecithin which have essential fatty acids as these are so important to our bodies and healing the nervous system.

Let's take a look at startup responses with mb12. There is a lot of misunderstanding about these. First, I would suggest that you start low and slow, say 1/8-1/4 of an Enzymatic Therapy B12 infusion (methylb12) 1000mcg. At 1/4 a tablet that is 250mcg gross and maybe 50mcg into serum. This 50mcg can cause considerable startup because it is active b12 and is immediately put to use. It is too little to cause any significant degree of detoxification. It takes some weeks for the immune system to start putting out the cells needed to fight off bacteria and viruses. Most of the startup would be casued by dirrect action on the nervous system and making everything more intense. Also it can provide for some mitochondrial startup. Adenosylb12 will provide more energizing for the mitochondria in muscles and nerves without any "detox" effects. And again maybe a single Country life adb12 (dibencozide) will help a great deal a day or two before starting the mb12. Also, for balance 1/4 of a Metafolin to start with can help.

Can you describe your symptoms, like which ones do you have from the list because many symptoms point at specific things. Don't ignore potassium. That can cause terrible "startup" effects by being depleted within days of starting even a small dose of mb12/adb12.

On the mb12, try increasing the dose by adding another 1/8 or whatever size, hours after the first one. In my experience this doesn't hit as hard as increasing the dose size as it keeps the peak lower. Also, if you have the "methyl-trap" Rich identified from my description as a possible explanation for the response to glutathione, you may need larger doses just to have the effect of breaking the "methyl-trap" which is different from "methylation block" or "methylation depletion" as it causes exagerated folate deficiency symptoms which can affect red cells more than b12. Can you give you blood cell information, such as size, type of "shape" problem and so on?
 
Messages
54
Location
Australia
Fredd I have dug up my decades old blood results on malformed red blood cells. This research was done by Dr.Les simpson of New Zealand in the 1980's and his treatment of either B12 or Fatty acids was some help in improving some symptoms of people with CFS/ME here in Australia. The theory was that these malformed cells were also stiffened and unable to enter capilliaries easily causing reuced blood flow. He did experiments which proved that certain abnormalities in shape were improved with supplements of either B12 or Fatty acids.

In my case I had an increased number of Flat Discoid cells. According to memory my mother had increased number of cup form cells. I have no information on sze of cells. I found that fatty acids as in efamol marine did indeed improve my symptoms of pain and fatigue and my mother also found that supplementing with B12 did help her very much.Unfortunately these days both of us can no longer tolerate these separate supplements.

To date after several days of taking 1/4 tab sublingual Jarrow methylcobalamin B12 I have no reactions of any kind which is typical of my experience with B12.
My list of symptoms I will leave for another day as my energy is almost zero.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd I have dug up my decades old blood results on malformed red blood cells. This research was done by Dr.Les simpson of New Zealand in the 1980's and his treatment of either B12 or Fatty acids was some help in improving some symptoms of people with CFS/ME here in Australia. The theory was that these malformed cells were also stiffened and unable to enter capilliaries easily causing reuced blood flow. He did experiments which proved that certain abnormalities in shape were improved with supplements of either B12 or Fatty acids.

In my case I had an increased number of Flat Discoid cells. According to memory my mother had increased number of cup form cells. I have no information on sze of cells. I found that fatty acids as in efamol marine did indeed improve my symptoms of pain and fatigue and my mother also found that supplementing with B12 did help her very much.Unfortunately these days both of us can no longer tolerate these separate supplements.

To date after several days of taking 1/4 tab sublingual Jarrow methylcobalamin B12 I have no reactions of any kind which is typical of my experience with B12.
My list of symptoms I will leave for another day as my energy is almost zero.

Hi Anne,

To the best of my awareness, neither b12 nor folate has anything to do with that kind of red cell shape. Becasue of the glutathione and it becoming intolerable I suspect that you will need much larger doses to overpower the folate and active b12 deficiencies induced by the glutathione, the "methyl-trap Rich identified. My Metafolin needs went up from 800mcg to 4800 to 8800 mcg to overcome all the ill effects of the glutathione which has lasted two years after ending the glutathione trial. After I upped the folate to 4800mcg in divided doses the mb12 and adb12 each went through a brief period of startup responses all over again.
 

richvank

Senior Member
Messages
2,732
Fredd I have dug up my decades old blood results on malformed red blood cells. This research was done by Dr.Les simpson of New Zealand in the 1980's and his treatment of either B12 or Fatty acids was some help in improving some symptoms of people with CFS/ME here in Australia. The theory was that these malformed cells were also stiffened and unable to enter capilliaries easily causing reuced blood flow. He did experiments which proved that certain abnormalities in shape were improved with supplements of either B12 or Fatty acids.

In my case I had an increased number of Flat Discoid cells. According to memory my mother had increased number of cup form cells. I have no information on sze of cells. I found that fatty acids as in efamol marine did indeed improve my symptoms of pain and fatigue and my mother also found that supplementing with B12 did help her very much.Unfortunately these days both of us can no longer tolerate these separate supplements.

To date after several days of taking 1/4 tab sublingual Jarrow methylcobalamin B12 I have no reactions of any kind which is typical of my experience with B12.
My list of symptoms I will leave for another day as my energy is almost zero.

Hi, Anne.

I corresponded some with Les Simpson about 12 or 13 years ago, and also sent him a sample of my blood when I had colon cancer. (I miss him from the ME/CFS battle; he was a real warrior!) I think the reason for the misshapen red blood cells that he observed by electron microscopy in ME/CFS is that oxidative stress preferentially damages the unsaturated fatty acids in the phospholipid cell membranes. Taking supplementary unsaturated fatty acids, as in Efamol, helps this condition by supplying new fatty acids that have not been damaged. Taking B12 supports the methylation cycle, which is linked to the synthesis of glutathione, which helps to control the oxidative stress.

However, I now believe, after several years have elapsed and we have benefited from the research in autism, that the basic problem is the partial block in the methylation cycle. When this is lifted, glutathione comes up automatically, and the damage process is stopped. As Freddd noted, it requires at least the combination of B12 and folate, preferably 5-methyl tetrahydrofolate (Metafolin or Folapro) to lift this block.

I don't know whether your taking glutathione in the past will have the same negative effect on you as Freddd experienced from supplementing glutathione or its precursors. I think that depends on whether you have the inborn error of metabolism in the intracellular B12 processing enzymes that Freddd has reported having. I don't know how prevalent that is. My impression from the literature is that it is rare, but Freddd believes that it is more common, based on his experience.

Best regards,

Rich
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi, Anne.

I corresponded some with Les Simpson about 12 or 13 years ago, and also sent him a sample of my blood when I had colon cancer. (I miss him from the ME/CFS battle; he was a real warrior!) I think the reason for the misshapen red blood cells that he observed by electron microscopy in ME/CFS is that oxidative stress preferentially damages the unsaturated fatty acids in the phospholipid cell membranes. Taking supplementary unsaturated fatty acids, as in Efamol, helps this condition by supplying new fatty acids that have not been damaged. Taking B12 supports the methylation cycle, which is linked to the synthesis of glutathione, which helps to control the oxidative stress.

However, I now believe, after several years have elapsed and we have benefited from the research in autism, that the basic problem is the partial block in the methylation cycle. When this is lifted, glutathione comes up automatically, and the damage process is stopped. As Freddd noted, it requires at least the combination of B12 and folate, preferably 5-methyl tetrahydrofolate (Metafolin or Folapro) to lift this block.

I don't know whether your taking glutathione in the past will have the same negative effect on you as Freddd experienced from supplementing glutathione or its precursors. I think that depends on whether you have the inborn error of metabolism in the intracellular B12 processing enzymes that Freddd has reported having. I don't know how prevalent that is. My impression from the literature is that it is rare, but Freddd believes that it is more common, based on his experience.

Best regards,

Rich

Hi Rich,

I don't think the methyl-trap has anything to do with whatever genetic characteristics I have. It's much too widespread a response to glutathione (precursors) to be anything rare. When there is too much glutathione by supplementation I think that it just chemically overwhelms the limited amount of enzyme available for that uphill conversion to methylbv12. It is very predictable who will have such a response. Anybody who has had strong responses to mb12/adb12/metafolin who takes enough glutathione will then be in a position to notice the sudden onset of the methyl-trap.

http://webcache.googleusercontent.c...&gl=us&client=firefox-a&source=www.google.com
FolaPro features Metafolin, the active, preferred form of folate called L-5-methyl
tetrahydrofolate (L-5-MTHF).

FolaPro IS Metafolin.

I specify Metafolin because that is what I have tested personally. As Merck requires adherence to it's pharmaceutical standards for all marketed brands of Metafolin, all marketed brands of Metafolin are equivalent in activity and stability. There are some other makers of methylfolate via other processes being marketed that may not have the stability of Metafolin.

Fatty acids are very important in all this. I had no idea they mattered in this role as well.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd I have dug up my decades old blood results on malformed red blood cells. This research was done by Dr.Les simpson of New Zealand in the 1980's and his treatment of either B12 or Fatty acids was some help in improving some symptoms of people with CFS/ME here in Australia. The theory was that these malformed cells were also stiffened and unable to enter capilliaries easily causing reuced blood flow. He did experiments which proved that certain abnormalities in shape were improved with supplements of either B12 or Fatty acids.

In my case I had an increased number of Flat Discoid cells. According to memory my mother had increased number of cup form cells. I have no information on sze of cells. I found that fatty acids as in efamol marine did indeed improve my symptoms of pain and fatigue and my mother also found that supplementing with B12 did help her very much.Unfortunately these days both of us can no longer tolerate these separate supplements.

To date after several days of taking 1/4 tab sublingual Jarrow methylcobalamin B12 I have no reactions of any kind which is typical of my experience with B12.
My list of symptoms I will leave for another day as my energy is almost zero.

Hi Anne,

The minimal amount was to try to be gentle in onset due to your fragile condition. However, that tiny amount is only the first step which indicates you haven't had an extreme reaction. Next is a titration to 25mg/day and then finally a 50mg single dose to test for CNS response.

Also adenosylb12 needs to be tried at the 3mg and above level and then as a single 50mg dose to check for CNS response.

Metafolin needs to be increased as well. It took me 4800mcg in 3 doses daily of Metafolin to overcome the effects of glutathione and 10mg of mb12 injected (50mg sublingual) which gave me mild startup responses all over again and the same with 51mg sublingual of adb12.
 
Messages
54
Location
Australia
Rich your reasoning on the oxididating stress effects on red blood cells makes a lot of sense. It would be marvelous if I got good results from your protocol. It will be a very slow and tortuous journey but I hope I can make it to the full protocol.

Les Simpson is certainly a wise and helpful Doctor and a real gentleman. I do hope the colon cancer has been healed and that you are well again.
 
Messages
54
Location
Australia
I an now taking 1/2 tab of methyl B12 daily in divided doses sublingually and 1/8th tab of actifolate daily. Start up symptoms were electrical 'buzzing' sensations and increased pain which have now lessened. A major symptom has been considerable constipation instead of the irritable bowel induced diarrhoea I usually have. Rewardingly my brain fog has lessened and I have had more days of feeling less exhausted and as if I am about to die. After another week I will increase the actifolate to 1/2 tab daily.

Fredd, my symptoms in a nutshell are pretty much everything that a severely affected person with ME/CFS has but I never have swollen glands. I did have some fibromyalgia, IBS and fatigue before crashing with this illness 30 years ago after a whiplash injury while riding my horse.
One factor I feel in all this is my desire for sweet food in my diet. I feel that if I could control that and have no sugar of any kind ever that I would be much better but alas my willpower fails every so often. I did have a test to see if adding chromium would help reduce the sweet tooth but that was negative.

I also have Addisons disease diagnosed 26 years after becoming ill. The cortisone (Dexamethasone Hydrocortisone and fludrocortisone) keeps me alive but my condition is actually much worse since going on the cortisone. I am intolerant of most drugs so think the cortisone makes me ill but I have no choice but to take it if I want to live. A couple of years ago I suffered an adrenal crisis because of a stomach virus and almost died. I was unconcious so have no memory of it but it certainly shook up the family. These days i am very careful to never let my cortisone level drop and go to hospital emergency if necessary.

I also tested positive for Lyme disease many years ago and antibiotics did initially relieve some migrating arthritic pain but that is all. I do query that result and think it may be a false positive. I have POTS, MCS, FM, Spinal Stenosis L3-4 (made much worse by 30 years of enforced sitting and lying), IBS, Migraine, and Asthma.

I could list every one of my 70-100 symptoms but lack the energy to do so. Thanks for the help.
 

richvank

Senior Member
Messages
2,732
Rich your reasoning on the oxididating stress effects on red blood cells makes a lot of sense. It would be marvelous if I got good results from your protocol. It will be a very slow and tortuous journey but I hope I can make it to the full protocol.

Les Simpson is certainly a wise and helpful Doctor and a real gentleman. I do hope the colon cancer has been healed and that you are well again.

Hi, Anne.

Yes, thankfully I have not had a recurrence. I, too, hope that the methylation treatment will help you.

Best regards,

Rich
 

Lala

Senior Member
Messages
331
Location
EU
What exactly is methyl trap? I was on NAC 2400mg daily for 5 years and I still am. I occasionally took some MB12 Jarrow 5000 mcg and felt usually nothing, sometimes it seemed little bit improving my mental condition. What can I expect when I increase the dose to 5000 mcg x 3 daily now? I also have hypokalemia. I even had it before I started any treatments and supplements. Not sure how this whole thing (glutahione precursors-kalium-B12) is connected. Did I understood right that excess in B12 depletes kalium? And NAC with further precursors deplete B12?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
What exactly is methyl trap? I was on NAC 2400mg daily for 5 years and I still am. I occasionally took some MB12 Jarrow 5000 mcg and felt usually nothing, sometimes it seemed little bit improving my mental condition. What can I expect when I increase the dose to 5000 mcg x 3 daily now? I also have hypokalemia. I even had it before I started any treatments and supplements. Not sure how this whole thing (glutahione precursors-kalium-B12) is connected. Did I understood right that excess in B12 depletes kalium? And NAC with further precursors deplete B12?

Hi Lala,

Did I understood right that excess in B12 depletes kalium? And NAC with further precursors deplete B12?

Let's try this from the start. B12 in general, mb12 and adb12 more specifically, and a few other cofactors can cause a speedy onset of healing. Suddenly started up healing can start causing depletion of other nutrients, including potassium. When serum potassium starts getting too low instead of merely stopping healing, the body is affected rapidly with spasms, and muscle and heart malfunctions, mood changes etc. This needs to be corrected by taking potassium in some form. Prolonged and severe hypokalemia results in paralysis and deAth


I also have hypokalemia.

You keep it? For me it was very temporary until I got some potassium into me which always was within minutes of the unusual spasms starting. I never let it keep going as that is very dangerous.

And NAC with further precursors deplete B12?

Nac with glutamate for instance are the precursor pair that causes increased glutathione. Glutathione can cause methyl-trap by combining with the active b12s and converting them to glutathionylcobalamin, a non-active form, which lack of active b12 then causes the folate to be dumped from cells creating a hard folate deficiency quickly and building mb12 and later adb12 deficiencies. This is commonly called "glutathione detox reaction" and is identical to "methyl-trap" and corectable by stopping the glutathione precursors and increasing metafolin and then mb12 and adb12.
 

anne_likes_red

Senior Member
Messages
1,103
Potassium Q for Freddd.

(A different Anne here)

Freddd - the autism people in particular seem very keen on supplementing potassium well before starting any treatment that may stimulate detox and healing.
...I currently make and use a hydration drink, recommended by them, that includes 730mg (21% daily value), or 1/4 tsp potassium chloride powder over the course of a day.
Should I up the amount of potassium prior to starting methylation support supplements? If so, any idea what would be an ideal dose?

Thanks :)
AnneLR
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
(A different Anne here)

Freddd - the autism people in particular seem very keen on supplementing potassium well before starting any treatment that may stimulate detox and healing.
...I currently make and use a hydration drink, recommended by them, that includes 730mg (21% daily value), or 1/4 tsp potassium chloride powder over the course of a day.
Should I up the amount of potassium prior to starting methylation support supplements? If so, any idea what would be an ideal dose?

Thanks :)
AnneLR

Hi AnneLR,

That's a good question. Most OTC potassium supplements at in the range of 90-100mg per tablet, nothing huge, but potassium can sneak up on you because serum potassium is only the tip of the iceberg. The body can absorb quite a bit or leach quite a bit in and out of the serum. When the edge of this elasticity is reached the serum level can change rapidly with very little intake or small rate of loss. What happens with the active b12s is that their lack, and mfolate and a few others as well, causes a slowing down of cell formation. When bad enough there can actually be muscle atrophy, inflamed and damaged epithelium and endothelium tissues, blood abnormalities and demyelination of nerves. When all of these start healing at once it can put a big demand on all other nutrients and most especially potassium.

If a person is on a diuretic that can affect potassium loss too. During the various periods I have varied from 198mg twice a day to 594mg twice a day.

In the active b12 protocol low potassium has been my experience 3 days following the start of various significant nutrients. What you are taking is probably just fine as a precaution and then watch for certain types of changes as well as whatever CBC with potassium tests you have done.
 

Lala

Senior Member
Messages
331
Location
EU
Hi Fredd, thank you for your explanation. I had hypokalemia when I was the most sick, then it corrected itself with treatment of my infections. I knew nothing about hypokalemia reasons in those days nor my doctor had any idea, why it was so low. Then I had some crisis and my kalium decreased on borderline. So, now I have some clue. Interestingly I have never had spasms or heart problems, I did have problems with mood. I ordered some kalium orotate and will try to take it before increasing mB12. I also took strong B vitamins-100mg along with NAC, these: http://www.swansonvitamins.com/SW056/ItemDetail. So I speculate it could help with methyl trap also when on NAC.