B-12 - The Hidden Story

[jmiller]

reasons for startup reactions?

If it's the B12s that are giving you the trouble, just taking the lozenge out of your mouth will stop the reactions.

And Joseph, I think your list is an excellent idea. You're right, when I'm crashing my emotions blot out a lot, including hope.

Thanks for the kind remark Sunday. I need to keep these reasons at my fingertips. It's so easy to lose focus when the storms come. If I didn't have a strategy, I'd be sunk. Please let me know if you have anything else to add to the list...

joseph

 

[Freddd]

Hi, freddd.

That's very interesting! It sounds as though the melanocytes have been knocked out where the freckles used to be. This reminds me of what goes on in vitiligo on a larger scale. There is an oxidative stress component in the vitiligo mechanism--hydrogen peroxide is found to be elevated. Given that you had a B12 deficiency, I suspect that your glutathione was depleted as well, and that would have led to oxidative stress.
Perhaps oxidative stress knocked out your melanocytes in those regions. I haven't done a good job of studying this possibility, but that's what occurs to me off the top of my head.

Rich

Hi Rich,

Vitiligo is associated with b12 deficiency in quite a few places. It pops up often enough that I have it included on the active b12s/folate deficiency signs, symptoms and co-correlates. I had no idea as to the mechanism. Also associated with b12 deficiency is a yellowing-darkening of some specific skin areas. I don't remember which ones right off the bat.

 

[Freddd]

Hi Rich,

In an attempt to define just what b12 deficiency is I have run into certain things that make it very difficult to limit the definition to a nice neat thing. In much research I run into the statement to the effect "The only definitive test for whether a person is b12 deficient is a trial of b12. If they respond, they were deficient." That is reasonably universal in articles attempting such definition whether in journals or other media. Internaltionally no two countries define b12 deficiency the same way. "Low" b12 serum levels alerts range from about 160pg/ml to 550pg/ml. Responsive neurological symptoms go to over 1500pg/ml. The specific symptoms depend upon form of b12 used in the country as the primary theraputic form. The list of symptoms that depend upon cycbl response are the smallest, hycbl is next smallest and mb12/adb12 is inclusive of 100% of those that respond to cycbl, hycbl and about 3 times as many as both combined in total. All these people that will respond to mb12/adb12 but not hycbl or cycbl have a mystery diseases and are often blamed with "it's All In Your Head". Nothing really works for them except mb12/adb12. Almost everybody who notices any effects from mb12/adb12 has noticable differential effects for each active form. That is very common, not at all rare.

There is no limitation spoken of anywhere about having to exclude folate as a necessary cofactor. More then half the classic symptoms including everybody's favorite, macrocytic anemia even warns that while folate might appear to fix the blood problems b12 must also be given to avoid serious neurological damage. A lack of active folate appears to prevent mb12 activity in a substantial percentage of people, well over 50%. So to say that requiring folate as well rules out b12 deficiency seems like rather bizzare logic. The two are so closely interrelated that most of the deficiency symptoms of each are the same.

The taking of cycbl/hycbl and folic acid quite clearly causes "depleted methylation capacity" which appears to be approximately if not identically the same as "methylation block". In the USA it is almost impossible to eat a diet including cereals and any fortified products without also consuming cycbl and folic acid. The small amounts included in the diet that way appear sufficienct to cause depleted methylation capacity in susceptable people. People taking mb12 and methylfolate don't become depleted methylators.

It is impossible to define b12 deficiency without including "depleted methylation capacity" ("methylation block?) as one of the major signs. As possibly half of b12 deficiency symptoms are linked to depleted methylation capacity including most of the well known hallmark symptoms including all the blood problems, epithelial and endothelial breakdown including beef-red burning tongue and IBS, some of the neurological problems and many more, it is clear that put another way "depleted methylation capacity" (methylation block?) is one of the major signs of mb12 deficiency specifically. The severe fatigue often associated with b12 deficiency and often found with the MMA marker is a clear sign of adb12 deficiency specifically but also can be indicative of other cofactors lacking such as methylfolate and l-carnitine.

 

[Freddd]

A CAUTIONARY NOTE ON BELIEF IN RESEARCH FINDINGS

In fact, medical, economic, and business-management researchers themselves have studied the reliability of published research and concluded that most of it is flawed, exaggerated, or just plain wrong. No wonder: scientists and other top-shelf experts are often highly biased, shockingly sloppy, and in a surprising number of cases outright fraudsand Im relying on formal studies of these problems when I make these claims. Medical researchers, for example, have noted that about two thirds of the findings published in top medical journals end up being contradicted. Leading researchers such as John Ioannidis, a researcher at Harvard, Tufts, and the University of Ioannina in Greece, suspect that most of what doctors are taught is actually off base.

http://www.newsweek.com/2010/06/24/the-case-against-experts.html

Be very careful what you choose to believe and act upon.

I am not saying this in regard to any specific thing. In reading research on a variety of topics I have found all sorts of errors that would have flunked a high school chem lab report including flawed logic, comncliusions not supported by data, inaccurate graphs, tables of statistics that don't match the graphs, made up data points and many other offenses. Many researchers are out to prove thier pet theory whether the data does or not. Many are out to protect their own prior research from being discredited regardless of the truth.

 

[maryb]

Hi Maryb,

The other 5 star brand is Enzymatic Therapy. Don't forget to take the Country Life Dibencozide (adob12).

Thank you so much you guys are really so very kind, much appreciated.

 

[powertool4]

Just to chime in, my family has found that natural factors methylcobalamin is tons stronger and more effective than jarrows methylcobalamin. I will leave it open ended and say that everyone is different on how they metabolize things and so I won't make the statement that one is better but for US, we have found that jarrow is no where near as effective. My mom takes 2000mcg daily for neuropathy and tingling in her face that goes away with natural factors. jarrow at 3000 didn't do anything.

 

[mtnwoman]

I had a question for Freddd: Does he recommend a pharmacy for the methyl B12 shots? and does he recommend a dosage per syringe?

At another forum I read were someone got #30 syringes of 25mg/ml for $100. That sounded pretty good to me.... At that dose one syringe would give 5 doses of 5mg... altho they might not provide all the needles one would need. [ I believe it was fallonpharmacy ]

Thanks,, this has been a fascinating read. I come from the lyme borrelious camp (many overlaps with ME/CFS imo...)

And Freddd, have you tried the Natural Factors methyl B12?

 

[Freddd]

Just to chime in, my family has found that natural factors methylcobalamin is tons stronger and more effective than jarrows methylcobalamin. I will leave it open ended and say that everyone is different on how they metabolize things and so I won't make the statement that one is better but for US, we have found that jarrow is no where near as effective. My mom takes 2000mcg daily for neuropathy and tingling in her face that goes away with natural factors. jarrow at 3000 didn't do anything.

Hi Powertool4,

Who knows why. There are many possible reasons not the least of which that the tests I ran were 7 years ago. My suggestion is to try Enzymatic Therapy also and a variety of other brands, we did 10 brands, and do some updated testing with a group. We did a group of 5 and all 5 testers were very aware of differences amongst brands with the top two being absolutely unanimous and the bottom 1 being so. The other seven brands were very close together with some differences of ranking by individual testers. At the time I was surprised at the consistancy. I think it would be good if you were to do 10 brands again to get a good idea of the range of the spectrum. We started out with 30 day testing periods and found that to be too long for the testers to tolerate some of the ineffective brands. Where brands had more than 1 size dose we usually tested both sizes so while there were 10 brands there were actually more like 13 different items tested. After devistating setbacks from one brand in pariticular we changed the method of testing. We did our best to use consistant techniques across all brands and sizes.

 

[Cloud]

Very interesting with the Vitiligo.....I had that pretty bad all over my shoulders, arms, and back, when I first got ill. I looked like a leopard. I did see a dermatologist who said it was an endocrine problem. I never followed through with it and the condition cleared for no apparent reason after something like 1-2 years.

 

[Freddd]

I had a question for Freddd: Does he recommend a pharmacy for the methyl B12 shots? and does he recommend a dosage per syringe?

At another forum I read were someone got #30 syringes of 25mg/ml for $100. That sounded pretty good to me.... At that dose one syringe would give 5 doses of 5mg... altho they might not provide all the needles one would need. [ I believe it was fallonpharmacy ]

Thanks,, this has been a fascinating read. I come from the lyme borrelious camp (many overlaps with ME/CFS imo...)

And Freddd, have you tried the Natural Factors methyl B12?

Hi Mtnwoman,

I tried Natural factors 7 years ago in the trials of 10 brands. It was kind of mediocre at the time. It didn't allow full rapid reversion of symptoms as some brands did, one brand having no effect at all, but it didn't continue healing on all symptoms affected by the best and couldn't even allow the treading of water on all symptoms, some reverted. However lots of things can happen in 7 years. Suppliers of crystal mb12 can be changed and that can make a huge difference. Formulations of the base can be changed allowing better absorbtion. Manufacturing processes can change allowing better absorbtion. And as powertool suggests, perhaps difference folks have different oral environments and pH or whatever so different brands may be optimum. With only 5 testers our pool was restricted. If I were to run it again I would want at least 20 testers. The things is the tests did show tremendous variations amongst brands of what were all supposed to be the same thing. Just amonst the brands the spread was as large as from cycbl to the best of mb12. Did that mean that one of the brands was exposed to too much light during manufacturing? Who knows. The other thing we noted was the very large agreement amongst the testers. The best two and the worst one were that for all 5. With the other 7 brands everybody was close on agreement and nobody differed more than 1 step from anybody elses rating of the same brand.

If it were to be done again there are some additional brands I have heard suggested might be included. All the ones included were from normally reputable labels. I think that at least 10 brands need to be tested to get a good idea of the range.

At another forum I read were someone got #30 syringes of 25mg/ml for $100. That sounded pretty good to me.... At that dose one syringe would give 5 doses of 5mg...

I have not heard of any pharmacy selling 750mg of injectable mb12 for $100. For instance 25mg/ml concentration is no gurantee that that the syringes contain 1ml. Also, unless the syringes are foil wrapped the exposure to light entailed in preparation and handling would assure that the contents had broken down to hycbl and thereby near useless. In a syring the mb12 is exposed to 10x aas much light as in a vial for each second of exposure to room light. It only takes a few minutes of exposure to room light in a vial to make a noticable difference and degrading of effectivness and causing acne type lesions instead of healing.

 

[Tal]

I found this thread to be interesting, but was surprised to see Source Naturals rated so low. I had just started taking Advanced B-12 Complex by Source Naturals, which is really just a combination of 2.5mg of methylcobalamin, with 2.5mg of adenosylcobalamin. I leave it under the tongue for 30 mins. It also has some folic acid.

The only thing I seem to have noticed so far (it's only been a few days), is noticeably less anxiety soon after taking it. The first day I didn't think much of it, till I noticed the same thing the next day as well. A very calm feeling. Of course it's far too early to conclude anything. I was just hoping that the brand I picked isn't somehow ineffective.

 

[Freddd]

I found this thread to be interesting, but was surprised to see Source Naturals rated so low. I had just started taking Advanced B-12 Complex by Source Naturals, which is really just a combination of 2.5mg of methylcobalamin, with 2.5mg of adenosylcobalamin. I leave it under the tongue for 30 mins. It also has some folic acid.

The only thing I seem to have noticed so far (it's only been a few days), is noticeably less anxiety soon after taking it. The first day I didn't think much of it, till I noticed the same thing the next day as well. A very calm feeling. Of course it's far too early to conclude anything. I was just hoping that the brand I picked isn't somehow ineffective.

Hi Tal,

THe only Source Natural tested 7 years ago was a 5mg methylb12 sublingual. So far, from others who have tried that one and compared it to Jarrow or Enzymatic Therapy, the results have held up with the Source Natural being almost inactive by comparison. Of course things can change over 7 years and I am interested in assembling a new panel and testing 20 brands this time and a larger panel. The purpose of the testing was to find reliable brands for healing. I had been going greeat guns on Enzymatic Therapy and it became backordered all around the country. I bought Source Naturals and found all my symptoms galloping back within 3 days. That was what triggerred the necessity for testing, needing to find a brand that wasn't a setback.

So if you wanted to do a comparison test, you would need to buy either of the 5 star brands of mb12 (Jarrow and Enzymatic Therapy) that we have found consistantly reliable for thousands of people including Country Life Dibencozide (adenosylb12) and try the combination as compared to the Source Natural product. If those other two produce a knock your socks off response by comparison you will expwerience what we, the 5 testers experienced. If I had tried Source Naturals first you wouldn't be reading this because I had zero effect from it. Maybe it's the adb12 you are responsding to or maybe this product is different in some important way from the 5mg mb12 or maybe they have made changes.

Also, even though the Country Life also has folic acid we strongly urge Metafolin for active folate because that will be superior for more than half the people.

 

[Freddd]

Just a cautionary note:
http://news.yahoo.com/s/hsn/20100702...50aWJpb3RpY21h


THURSDAY, July 1 HealthDay -- A new study warns that seniors who take a common antibiotic combination for urinary tract infections are at increased risk of developing potentially life-threatening high potassium levels.
Researchers examined the medical records of 300,000 older adults in the Canadian province of Ontario who were taking heart drugs known as beta blockers. Of those, 189 patients had to be hospitalized because their potassium levels reached dangerously high levels after they took antibiotics to treat urinary tract infections.
The patients who were most likely to develop the hazardous potassium levels, known as hyperkalemia took the widely prescribed antibiotic TMP-SMX (a combination of trimethoprim-sulfamethoxazole).
"Hyperkalemia is a potentially deadly adverse drug reaction," Dr. Matthew A. Weir, of London Health Science Center, said in a news release from the American of Nephrology . "TMP-SMX can decrease the kidney's ability to remove potassium from the body." Since potassium plays a key role in regulating heartbeat, he said, abnormally high levels of potassium "can cause fatal disturbances in the heart rhythm

 

[winston]

Sunday, I need words of encouragement things have gone bad this week. I was doing so well for several months. I was not on any critical cofactors and wanted to feel better and tried the l-carnitine fumurate and it made me sick even that nasty nausea came back. I stayed on it 2 weeks than quit. Felt a little better until this week. Freddd suggested trying small amouts of TMG. My legs are killing me, some nausea, brain fog, anxiety as always goes with this because I get scared, fatigue and I just feel sick. Had blood work done and have an appointment with my endocronologist on Tuesday, maybe something else is happening. Need some perspective, like what is happening?

Lena

 

[Freddd]

Very interesting with the Vitiligo.....I had that pretty bad all over my shoulders, arms, and back, when I first got ill. I looked like a leopard. I did see a dermatologist who said it was an endocrine problem. I never followed through with it and the condition cleared for no apparent reason after something like 1-2 years.

Hi CLoud,

My lighter spots are only relatively lighter. They do tan a little, but are always about 3 shades lighter than the surrounding skin. On areas that are untanned they are invisible. Mine have not gone away in the past 4 years or so and I still keep having a few newer spots as the last of the relativedly recently aquired feeckles puff up, crust over and fall off. The cycle takes at least 6 months.

 

[jmiller]

Sunday, I need words of encouragement things have gone bad this week. I was doing so well for several months. I was not on any critical cofactors and wanted to feel better and tried the l-carnitine fumurate and it made me sick even that nasty nausea came back. I stayed on it 2 weeks than quit. Felt a little better until this week. Freddd suggested trying small amouts of TMG. My legs are killing me, some nausea, brain fog, anxiety as always goes with this because I get scared, fatigue and I just feel sick. Had blood work done and have an appointment with my endocronologist on Tuesday, maybe something else is happening. Need some perspective, like what is happening?

Lena

Hi Lena,
I'm sorry to hear that you're having a bad week. I'm going through a lot of startup reactions myself. I thought I'd pass along something I read this weekend. It was on the 'Active B12 Basics' thread. Under 'MethylB12 Startup Effects', Freddd said "L-carnitine can have a strong startup effect if it has been lacking". You may want to take a moment a read through this post. I have to keep reminding myself of the reasons for startup issues...
http://forums.wrongdiagnosis.com/showthread.php?t=62327

joseph

 

[Sunday]

Lena, I know how discouraging it is to dip just when you think you've gotten somewhere. And as a Lymie friend of mine says, when I'm detoxing, all the bad emotions come up; I think that applies to our flareups, too.

But be of good cheer, there could be a lot of reasons this is happening, and you've worked it out before, so likely you can do it again. I think Joseph has a good point about the l-carnitine startup. Because what you are going through sure sounds like more startup. Could you try starting with small amounts of l-carnitine, the way you did with the B12s? If need be, you can take capsules apart and divide the contents among some empty capsules (available in your health food store).

I will also say that, in my own case, acetyl-l-carnitine seems to be serving me better than l-carnitine-fumarate; I know different people have different needs in that department. There is a Jarrow formula, Carnitall, that has a few forms of l-carnitine.

In my own case, I didn't seem to have any l-carnitine startup, it's the methylfolate that lays me on the ground. I still might need to add more methylfolate to my protocol but it knocks me back for about 2 weeks, so I need to do that sometime when I'm not looking for a place to move into.

I'm so sorry you're going through this; I know how discouraging it is, believe me. I have added a lot of adb12 to my protocol (I'm now doing 10 3mg lozenges a day) and that and the acupuncture seems to be helping. I also upped my dose of l-carnitine (still trying different forms). My brain fog is better, and I look at the list o' symptoms and realize that several have diminished or disappeared. This is a good exercise when discouraged; it's a way to know some progress is happening, even if it doesn't feel that way. I use that list of B12 deficiency symptoms that Freddd put in the first 3 pages of this thread; it reminds me of the problems I used to have but have less of (or none of) now.

I am still only somewhat functional (due to PEM and OI and brain fog attending on the PEM), but I remind myself that I am more functional than I was when I started this protocol, and I have hopes for the future.

 

[winston]

Hi Joseph & Sunday, thank you both for your concern. Its a challenging path we are all going on together I always appreciate your input. I know this protocol is the answer for many of us but it is so precise and each one of us have our own sensitivities to anything we put in our mouth. When you listen to your body the answer is usually there.

The last 3 weeks something changed and at first it was vague but now I am on a downward spiral both mentally & physically. I keep track of every change made to my "pill taking ritual" even if a change of brand was made. I did make a minor change in brand with one of my supplements 3 weeks ago and hope this solves my mystery.

Well let you know what I discover.

Lena

 

[mtnwoman]

Question re labwork for B12 (is this an ok place to ask?)

Via Quest Labs I had a normal CBC: a very Low Vitamin B12 binding capacity, unsaturated (transcobalamin) 287 (nl= 650-1340); a high serum B12 1513 (nl= 200-1100); a normal methylmalonic acid;

Also had both MTHFR mutations and low homocysteine of 6.9.

What do y'all make of the low transcobalamin? Does that mean I am not able to get B12 to the tissues? specifically methyl B12?

With normal methylmalonic acid, does that mean the adensylocobalamin is ok?

[ I am a CDC positive chronic neuro lyme person ]

 

[richvank]

Question re labwork for B12 (is this an ok place to ask?)

Via Quest Labs I had a normal CBC: a very Low Vitamin B12 binding capacity, unsaturated (transcobalamin) 287 (nl= 650-1340); a high serum B12 1513 (nl= 200-1100); a normal methylmalonic acid;

Also had both MTHFR mutations and low homocysteine of 6.9.

What do y'all make of the low transcobalamin? Does that mean I am not able to get B12 to the tissues? specifically methyl B12?

With normal methylmalonic acid, does that mean the adensylocobalamin is ok?

[ I am a CDC positive chronic neuro lyme person ]

Hi, mtnwoman.

What had been your history of supplementing B12 before taking these lab tests? What forms of B12 had you been supplementing, if any, and in what dosages? It is necessary to know this in order to interpret your lab test results.

Best regards,

Rich