Help please with hydroxocobalamin sublingual for b12 deficiency

[retireddpm]

Since for maximum absorption you need as much contact time in mouth how long is it taking to dissolve. I am currently using Jarrow methyl b12 and can keep it for 1-1/2 hours which is supposedl to give me 15-25% absorption of ready to use methyl b12. The only problem is it seems to be making my paresthesia in feet and arms worse and tinnitus increase. Since the hydroxy form needs to be converted I would need maximum absorption and then not sure how much is converted to active mrthyl and adeno forms. Freddd on the b12 wrong diagnosis says only can get 10 mcg a day from hydroxy or cyano due to this keyhole effect. Since I am b12 deficient I need to get the active forms working for me. The first 4 weeks on the methyl caused only minimum problems but the last two weeks have been bad. Also tried some methyl folate and it also seemed to make things worse with the meth b12. I always thought I was a high histamine person because of mold allergy and sensitivity to MSG.

Any help appreciated
Ron

 

[Lisa]

The only problem is it seems to be making my paresthesia in feet and arms worse and tinnitus increase.

Hello Ron! :Retro smile:

First off - Stop taking the methylb12 right now, don't take another single lozenge.

My partner and I were trying out the same protocol last summer and everything went great - until suddenly it didn't. Forget 'start-up symptoms' this was much worse. Though we stopped soon as we could, the damage was already done. Oddly, just today I was updating a log I keep on my health status over the years.

Trying Freddd's methylb12 protocol cost me 25% total health which is equivalent to a full half of what my health level was. I had been at about 50% before starting it and in three short weeks on it, it began a crash process that had me at 25% health as of two months ago.

Since you are having a worsening of some very life bugging symptoms, just stop the lozenges now before it keeps getting worse.

Don't assume that any symptoms you develop or have worsen while taking methylb12 will go away if you stop taking it. Both mine and my partners symptoms that came from using it are still nearly as bad as they were when we stopped taking it - over a year ago.

In answer to your question.... :Retro smile:

I supplement now with Perque hydroxyb12 in addition to some shots every 3 days. Try doing a search here at the forums on hydroxocobalamin as there has been a number of conversations in the methylation topics about how much is absorbed, etc. A lot of people who do Rich Van K's methylation cycle stuff use Perque so they might be able to help answer your question too.

The Perque causes a noticeable effect for me now that my levels of b12 are coming back up from the shots, so I am sure its a fair amount that is absorbed and utilized by the body or I wouldn't be seeing anything from using the one lozenge due to it being a fifth of what I get in a single shot.

Good luck Ron! Lisa :Retro smile:

Oh! And my CFS/MCS specialist agrees its possible I had trouble (and my partner too) with the methylb12 due to body mercury load, such as from tooth fillings. methylb12 is one of the only substances that can mobilize mercury in the body across the blood brain barrier and so when taking large doses of it, it is possible for it to start moving the mercury out of storage in tissues and into other areas - like the brain.

 

[caledonia]

If you have mercury, then you might want to stop, get back to a baseline, then spend some time doing a heavy metals chelation first.

I had already done that before I started methyl B12 and methyl folic acid. The only problems I had were when I got too much, then I felt kind of nervous and buzzed/overstimulated.

When I reduced the dose, that went away. In general, I'm a detox wimp, so I keep my dose low enough not to have any side effects.

You can test your metals status with Doctors Data Metals and Minerals. It also tests your mineral status - as chelation will also pull out minerals, it's important to be taking extra minerals while chelating.

 

[retireddpm]

Hello Ron! :Retro smile:

First off - Stop taking the methylb12 right now, don't take another single lozenge.

My partner and I were trying out the same protocol last summer and everything went great - until suddenly it didn't. Forget 'start-up symptoms' this was much worse. Though we stopped soon as we could, the damage was already done. Oddly, just today I was updating a log I keep on my health status over the years.

Trying Freddd's methylb12 protocol cost me 25% total health which is equivalent to a full half of what my health level was. I had been at about 50% before starting it and in three short weeks on it, it began a crash process that had me at 25% health as of two months ago.

Since you are having a worsening of some very life bugging symptoms, just stop the lozenges now before it keeps getting worse.

Don't assume that any symptoms you develop or have worsen while taking methylb12 will go away if you stop taking it. Both mine and my partners symptoms that came from using it are still nearly as bad as they were when we stopped taking it - over a year ago.

In answer to your question.... :Retro smile:

I supplement now with Perque hydroxyb12 in addition to some shots every 3 days. Try doing a search here at the forums on hydroxocobalamin as there has been a number of conversations in the methylation topics about how much is absorbed, etc. A lot of people who do Rich Van K's methylation cycle stuff use Perque so they might be able to help answer your question too.

The Perque causes a noticeable effect for me now that my levels of b12 are coming back up from the shots, so I am sure its a fair amount that is absorbed and utilized by the body or I wouldn't be seeing anything from using the one lozenge due to it being a fifth of what I get in a single shot.

Good luck Ron! Lisa :Retro smile:

Oh! And my CFS/MCS specialist agrees its possible I had trouble (and my partner too) with the methylb12 due to body mercury load, such as from tooth fillings. methylb12 is one of the only substances that can mobilize mercury in the body across the blood brain barrier and so when taking large doses of it, it is possible for it to start moving the mercury out of storage in tissues and into other areas - like the brain.

Lisa

Thanks for your reply. I seemed to be doing better for the first 3-4 weeks with Freddds protocol and then wham! IT was like all my symptoms quieted down at first and then came back worse than before. Freddd says to keep increasing to get by this but like you K am not sure that is the way to go. There may be something to getting too many methy donors, but I find the concept of over and under methylation very confusing with different grops saying different things. I think I will try the sublingual hydroxy b12 even if it does not get as much active b12 into the body cells and serum.

Thanks again
Ron

 

[Freddd]

Since for maximum absorption you need as much contact time in mouth how long is it taking to dissolve. I am currently using Jarrow methyl b12 and can keep it for 1-1/2 hours which is supposedl to give me 15-25% absorption of ready to use methyl b12. The only problem is it seems to be making my paresthesia in feet and arms worse and tinnitus increase. Since the hydroxy form needs to be converted I would need maximum absorption and then not sure how much is converted to active mrthyl and adeno forms. Freddd on the b12 wrong diagnosis says only can get 10 mcg a day from hydroxy or cyano due to this keyhole effect. Since I am b12 deficient I need to get the active forms working for me. The first 4 weeks on the methyl caused only minimum problems but the last two weeks have been bad. Also tried some methyl folate and it also seemed to make things worse with the meth b12. I always thought I was a high histamine person because of mold allergy and sensitivity to MSG.

Any help appreciated
Ron

Hi Ron,

Freddd on the b12 wrong diagnosis says only can get 10 mcg a day from hydroxy or cyano due to this keyhole effect


THis is correct no matter where it is said. Mb12 is approximately 100 to 10,000 times more effective, especially for neurological problems than cycbl and/or hycbl. Those only exist in use because of a lab mistake in 1948. Because of the vastly greater effectiveness of mb12 and adb12 there are a large amount of startup symptoms as up to 600 or so processes try to start up all at once. Paresthesias intensify quickly when methylb12 is started and then, as the cause heals they diminish. This is a road sign to healing. It takes a good nine months or so for significant neurological healing.

Further mb12 mobilizes the mercury and causes it to be dumped from the body. However, the tiny amounts in any quantity of mb12 sublinguals only affects minute amounts of mercurty at a time. Serum halflife of mobilized mercury, if it EXISTS, is about 72 days according to research. At 1mg absorbed mb12 per day, the mobilized mercury levels, if they exist at all, reach a peak after 3 months at about 3% of the amount that is known to cause the beginning of toxic effects at which it is maintained until it is removed from the body by the liver in the bile and showing up in the feces.

After a year on a 5 star mb12 and all necessary cofactors, most people who have some degree of b12 deficiency are doing a lot better and improvment continues. I'm still having healing going on after 7 years and some setbacks from various causes such as glutathione. After a year on hycbl most people do not show that same degree of healing. Be careful what pet theories you believe. Many of them will prevent healing. I can give you no reason at all to believe in my theories except that I have healed and am no longer ill as have many many others. I have been told of only 1 or 2 people who have actually become well with hycbl whereas there are many many who have recovered with mb12/adb12. If 1 in 3 or 1 in 10 or whatever recover with mb12/adb12 whereas 1 in 10,000 achieve the same degree of recovery with hycbl, and these are just estimates based on observation and experience, then mb12/adb12 is 1000 times more likely to promote recovery than hycbl. If hycbl actually works why are there so few able to demonstrate that? My remaining problems are due to neurological damage from long term severe deficiency and physical damage in a car wreck. And even with that 175 symptoms are just plain gone. I no longer have the symptoms and signs of CFS/ME/FMS. It has been a long hard path and it took 9 months to reach a point of recovery at which I was able to start discontinuing a variety of prescriptions and felt substantially better. That was when I entered the rehabilitation phase where I was able to start building muscle and capability again. I just got back from a vacation where I climbed up, and down, 1000 vertical feet and several linear miles or more every day just walking from my campsite to the pool, and other facilities. I could not have done that 7 years ago. Some days I doubled that or more. I was able to do 200 vertical feet uphill without stopping multiple times per day and felt good doing it. Seven years ago or more at the same resort I had to rest 3 or 4 times going up each 200 foot segment and I was able to do that no more than twice a day. I am recovered and know what it takes which includes the counterintuitive measure of putting up with temporarily worsened symptoms which may only be an illusion of a damaged nervous system coming back to life. Healing these things is painful.

The choice is yours. Choose wisely.

 

[Freddd]

Lisa

Thanks for your reply. I seemed to be doing better for the first 3-4 weeks with Freddds protocol and then wham! IT was like all my symptoms quieted down at first and then came back worse than before. Freddd says to keep increasing to get by this but like you K am not sure that is the way to go. There may be something to getting too many methy donors, but I find the concept of over and under methylation very confusing with different grops saying different things. I think I will try the sublingual hydroxy b12 even if it does not get as much active b12 into the body cells and serum.

Thanks again
Ron

Hi Ron,

but I find the concept of over and under methylation very confusing with different grops saying different things

You are no the only one that finds the under and over methylation business confusing. First there doesn't appear to be anything at all to it except confusion when all is said and done. The list of symptoms given for "over methylators" are essentially all mb12/adb12 deficiency symptoms. The list of symptoms given for "undermethylators" are essentially all mb12/adb12 deficiency symptoms. With the two lists side by side I had approximately equal numbers from each as did many people. These lists were made up from the lists of symptoms mentioned by multiple sites for "under" and "over" methylators. There does not appear to be any rhyme or reason to these lists unless they may be indicating some of the differences between adb12 and mb12 deficiencies or maybe the effect of methylfolate on deficiencies. I have this posted somewhere on Phoenix Rising but I couldn't tell you exactly where. The symptoms are color coded indicating the type of deficiency indicated. If you find them, let me know.

 

[TheMoonIsBlue]

Anyone know what happened to PERQUE?

The two places I used to buy from said that Perque requested they to no longer carry their products on their website (and they were "doctor" or "medical professional" owned/overseen compaines) The only other one says they are "not authorized sellers of Perque"?? (where does their stock come from?)

Their hydroxy B12 was the only one I could tolerate.

 

[Freddd]

I found the post.

I have taken that list of under and over methylators (sounds like some kind of rifle-shotgun combo) symptoms and categorized them as to type of b12 deficiency(s) by color and grouping them based on what symptoms I used to have.

I have included the characteristics as listed on several sites of under and over methylators. They BOTH include depression which seems contradictory to me. Color red means mb12 deficiency symptom. Color pink means frequent mb12 deficiency co-correlate. Color red-brown means adb12 deficiency symptom. There are no hydroxyb12 deficiency symptoms or co-correlates because they don't exist as such because hydroxyb12 has no direct usage except to be converted to adb12 and/or mb12. Be aware that virtually all b12 deficiency symptoms, taken one at a time, may have multiple other causes. Does anybody actually have only one set ot the other of these symptoms/charcteristics?


UNDER METHYLATORS


My remaining symptoms and characteristics after b12 & cofactors

2 - Poor tolerance of heat
9 - Excess perspiration
16 - Perfectionism
17 - Competitiveness
19 - Vasomotor rhinitis
27 - Good tolerance of cold

My symptoms before taking b12 and cofactors

1 - Depression - Depression
2 - Poor tolerance of heat
3 - Unexplained nausea
4 - Frequent colds and flu
5 - Poor pain tolerance
6 - Joint pain
7 - Joint swelling
8 - Joint stiffness
9 - Excess perspiration
10 - Insomnia
11 - Muscle pains - Muscle pains
12 - Seasonal depression
13 - Inhalant allergies
14 - Oppositional defiant -so my mother said but she was highly disturbed and psychotic and it was only her I was opposing and defying when she was irrational
15 - Frequent headaches - Frequent headaches
16 - Perfectionism
17 - Competitiveness
18 - Asthma
19 - Vasomotor rhinitis
20 - Allergic skin disorders
21 - Pruritis
22 - Sparse body hair - increased a lot to normal after mb12 and cofactors, especially on slick legs
23 - Fatigue
24 - Respond well to SAM-e and methylfolate and TMG and inositol and mb12 and adb12
25 - Anorexia/bulimia - physical, not psychological, no body distortion, no motivation to be anorexic except for b12 containing foods in some people
26 - Prone to hives
27 - Good tolerance of cold

Not my symptoms/chraracteristics

High salivary flow
High tear flow
Never dry eyes
Hyperactivity
Phobias
Highly motivated
Hard driving personality
Addictive tendencies
bipolar disorder
OCD
Schizophrenia
Abundant or excess saliva in mouth
Obsessive compulsive
Slenderness
Do worse on b12 and folates (4)
Shopping/gambling disorders
Excess stomach acid
High libido
Elevated absolute basophils
Extreme internal anxiety despite outwardly calm
Delusion thinking rather than hallucinations
Respond well to SAM-e, methionine, avoid folic acid (1)
Low serotonin
Low dopamine
Low norepinephrine
Psychosis
26 Total



OVER METHYLATORS


My remaining symptoms and characteristics after b12 & cofactors

1- High religiosity - if you include high spirituality instead of religiosity, I am anti-religiosity as such.
2 - High artistic/musical ability
4 - Absence of seasonal inhalant allergies - my seasonal inhalant allergies nave gone away with methylb12/methylfolate almost entirely
19 - Intolerance to SSRI drugs
21 - Low motivation





My symptoms before taking b12 and cofactors, except where noted


1- High religiosity - if you include high spirituality instead of religiosity, I am anti-religiosity as such.
2 - High artistic/musical ability
3 - Auditory hallucinations
4 - Absence of seasonal inhalant allergies - my seasonal inhalant allergies nave gone away with methylb12/methylfolate
5 - Frequent dry eyes
6 - Multitude of chemical sensitivities
7 - Multitude of food sensitivities
8 - Low libido - Low libido
9 - Auditory hallucinations
10 - Underachievement as child - so my mother would say
11 - Nervous legs - Nervous legs
12 - Depression - Depression
13 - Despair
14 - Respond well to mb12 and SAM-e and TMG and methylfolate and inositol and and adb12
15 - Upper body pain
16 - Head pain
17 - Low salivary
18 - Low tears
19 - Intolerance to SSRI drugs
20 - Treatment revolves around folic acid, niacin, B12, and a high protein diet. (2)
21 - Low motivation


Not my symptoms/chraracteristics

Elevated serotonin
Elevated dopamine
Elevated norepinephrine
Self injury
High anxiety evident to all
Obsessions but not compulsions
Paranoia
Heavy body hair
Hyperactivity
Grandiosity
Respond well to b12 but avoid SAM-e, inositol, methionine TMG and DMG (1)
Panic attacks
Nervous
High pain tolerance
space cadet
Learning disabilities
Low perspiration
17 Total

Once again, what remains after b12 and cofactors is approximately equal and down to 5 or 6 items in each category. Nothing distinguishing.
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