B-12 - The Hidden Story

[cfsbear]

Hi Rich,

Good call! I was busy using using my narrow field binoculars to concentrate on my wife's potential B12 deficiency in the brain. Maybe this will get some more people tested for Celiac Disease or problems with intrinsic factor when it indicates an upstream problem. Maybe this will become standard practice within a couple of decades.

Hi, cfsbear.

Thanks for posting this. I'm happy to hear that Quest is now offering the holotranscobalamin test. If a person takes this test as well as a urine methylmalonic acid and FIGlu test (such as in the Genova Diagnostics metabolic analysis profile, available either through a physician or from www.directlabs.com without a physician's order), this combination of results will indicate where the B12 problem lies. if present. If the holotranscobalamin test gives a low result, that will suggest that the B12 problem is upstream of that point. That is, the person has a low intake of B12, or is not able to absorb it well from food because of pernicious anemia or a gut problem, or they have a genetic transcobalamin deficiency, or some other problem upstream of this point. This would constitute a true B12 deficiency condition.

On the other hand, if the holotranscobalamin test gives a normal result, but the methylmalonic acid and FIGlu are high, that would suggest that there is a functional B12 problem in the cells themselves. This could be due to hijacking of the B12 by toxins as a result of insufficient glutathione to protect it (as proposed in the GD-MCB hypothesis for the pathogenesis of CFS) or due to an inborn error of metabolism involving the intracellular B12 processing enzymes, such as freddd has reported having.

I think this will be a very helpful test.

Best regards,

Rich

 

[CindyWillis]

I take large doses (20 mg) of B12 injections of the hydro...kind (10 mg twice a day) and it helps me tremendously.

 

[curry]

I've been taking the SAM-E for the last three days, and since have fever, feel dizzy, and have a dry nose/throat. As if I would come down with a flu.
I haven't really read anywhere about such side effects, so I am wondering what is happening.


(I should do a lot of stuff today and I can't...I am so fed up with all this. :Retro mad

 

[rlc]

I've been taking the SAM-E for the last three days, and since have fever, feel dizzy, and have a dry nose/throat. As if I would come down with a flu.
I haven't really read anywhere about such side effects, so I am wondering what is happening.


(I should do a lot of stuff today and I can't...I am so fed up with all this. :Retro mad

Hi curry sweating, dizzyness and dry mouth are all side effects of SAMe i'd advise you to stop taking it. link to all you need to know about it here http://www.nlm.nih.gov/medlineplus/druginfo/natural/786.html Have you managed to get a doctor to sort out your B12 deficiency? I used my patient rights to get rid of a bad doctor last week and now have one who's really good and is doing all the right tests etc all the best

 

[h4house]

Hope this isn't off topic, will remove it if it is. There is a really interesting article in this weeks New Scientist on Methylation and how it effects the way DNA coding is expressed. Not just for you; our actions can be passed down to your our grand children by the methylation 'markers' on the DNA. The actual DNA coding doesn't change, but the markers turn off/on different genes. Very brief mention of lack of methyl donors due to famine and increase in neurological problems in subsequent births.

Thought it may be of interest...

 

[Red04]

Seems to be working (50 day update)

My wife has been on the b-12 protocol for about 50 days (We haven't even re-ordered supplements yet). It was rough in the beginning. It was hard to tell what were normal symptoms or start up symptoms or reactions.

She just pushed through and the turnaround has been amazing. We went out saturday night and partied from 6-Midnight. Not once did she get fatigued. Eyes wide open the entire night. I specifically watched her and paid close attention.

She gets up early and goes to work now. Before, it was a challenge to get out of bed. I could go on and on....

I was hesitant to post anything up here in case symptoms returned. However, this is the longest she has gone feeling this good and after Saturday night, I can say for sure. She has seen 10,000% improvement. It was slow and steady and hard to realize. Nothing was instant (so don't expect it).

She has also come off of prozac, klonopin, ambien, and xanax.

I will post back with an update in another month or so. I would recommend giving this a try.

TIPS from my experience:

1. Get yourself 3 or 4 am/pm pill organizers (the biggest ones you can find) and load them up all at once.

2. Don't expect instant healing (it is slow and steady)

3. Just buy ALL the supplements and jump in. We tried going slow at the beginning and it seems it was a waste and I was going back to CVS every other day to get another co-factor.

4. Get a partner or buddy to buy in. I don't think my wife would have continued on her own. However, she never really thought it would work. I can't blame her though. I have made her try a few other things in the past that didn't work.

5. Push through. It is hard what to tell is a normal symptom, a startup response, a bad reaction. We worried and tried to track them. In the end, it didn't matter. Just ignore everything and PUSH THROUGH. I think we would have been better just ignoring everything and setting long term goals. Tell yourself you are going to finish 60 days before you ask any questions.

6. She still gets nausea with the PM dose every so often on an empty stomach. If you "tweak" or adjust anything, adjust when and how you take them with food.

These are just from her experiences. Everyone is different. She has only had this for ~2 years. Some people may be worse off.

Thanks FREDDD!!!!!!!!!!!!!!!

 

[richvank]

Hi, Red04.

I'm very happy to hear that your wife has turned the corner on freddd's protocol. From your previous posts, I can tell that it was no picnic for her or for you, and I'm glad that your persistence has been rewarded. As you probably know, freddd and I have somewhat different treatment approaches, but fundamentally, I think that lifting the partial methylation cycle block is the important thing that both our approaches have in common. There are now quite a few variations on this theme, and I think that is testimony that we are working in the right area of the biochemistry with this type of treatment. At this point, here are the protocols of this type of which I'm aware, not in any particular order:

freddd's protocol
The full Yasko treatment, used primarily in autism, but also in adult neurological diseases and CFS
The Simplified Treatment Approach that I extracted from the full Yasko protocol, with the help of a person with CFS
The Defeat Autism Now! treatments, including those tested by S. Jill James
The protocol used by Dr. Alan Vinitsky in Maryland, mostly in autism
The protocol used by Dr. Derek Enlander in NYC for CFS
The protocol used by Dr. Sarah Myhill in Wales for CFS
The "medical foods" from PamLab, given by prescription (Deplin, Cerefolin-NAC, Metanx) for depression, pre-Alzheimer's, and high homocysteine
The protocol recommended by Prof. Martin Pall (which now includes hydroxocobalamin and 5-methyl tetrahydrofolate, even though from his point of view, it is directed at the NO-ONOO cycle)

I'm hopeful that freddd's treatment will bring your wife to full recovery.

Best regards

Rich

 

[curry]

Healing leaky gut, mitochondrial failure and tons of other symptoms with some b vitamins?
Though the glutathione injections/methylation protocol haven't had any effect on the mitochondria?

If this poster is genuine, then he may say thank you to the power of placebo.

(More likely though someone here is writing with a second nick. Same grammatical errors and vocabulary as someone else.)

 

[richvank]

Healing leaky gut, mitochondrial failure and tons of other symptoms with some b vitamins?
Though the glutathione injections/methylation protocol haven't had any effect on the mitochondria?

If this poster is genuine, then he may say thank you to the power of placebo.

(More likely though someone here is writing with a second nick. Same grammatical errors and vocabulary as someone else.)

Hi, curry.

I agree that it seems hard to believe that "some b vitamins" would bring about improvement in such a broad range of symptoms. However, I invite you to examine the Glutathione Depletion-Methylation Cycle Block hypothesis, as described in my 2007 IACFS poster paper, which can be found at www.cfsresearch.org by clicking on CFS/M.E. and then on my name. This paper discusses the biochemical connections between the
partial methylation cycle block and the whole range of symptoms of CFS, and argues that this partial block is the root cause of them. I think that the success that people are having with this type of treatment is good evidence that this hypothesis is largely valid.

With regard to the mitochondria, there is good reason to believe from the biochemistry that glutathione depletion and a methylation deficit are the root causes of the mito dysfunction in CFS. Glutathione depletion can account for the oxidative stress that damages the mito membranes and blocks the Krebs cycle, as well as the build-up of toxins in the mitos, all of which has been observed by Dr. Howard's testing at Acumen. Note also that his testing usually shows glutathione depletion in the red blood cells. In addition, methylation is necessary to synthesize both carnitine and coenzyme Q-10, which are needed by the mitos and are found to be deficient in CFS.

Glutathione injections are not a permanent fix for glutathione depletion in CFS. In order to bring glutathione back up to normal on a permanent basis, it is necessary to lift the partial methylation cycle block, which is upstream of glutathione synthesis in the sulfur metabolism. I found this out the hard way, after several years of trying to help people to raise glutathione by more direct means, including the injections.

I note that Dr. Myhill has incorporated support for the methylation cycle in her overall protocol, though I don't think she sees it as the root cause of the mito dysfunction.

Gut problems sometimes need addtional treatment, however. If the gut is not able to absorb nutrients or to excrete toxins well, then the methylation cycle treatments will have difficulty working, especially since they involve oral supplements and since they will provoke mobilization of stored toxins as the detox system comes back into operation.

Anyway, all of this is for real, and more information is available at the website I mentioned above.

Best regards,

Rich

 

[curry]

Hi richvank

I have not questioned the validity and effectiveness of your glutathione depletion/methylation cycle block protocol - to the contrary.

I know the protocol you recommend is based on solid scientific knowledge and evidence.


(Unlike someone else's protocol on this board.)

 

[Red04]

Hi, curry.

I agree that it seems hard to believe that "some b vitamins" would bring about improvement in such a broad range of symptoms. However, I invite you to examine the Glutathione Depletion-Methylation Cycle Block hypothesis, as described in my 2007 IACFS poster paper, which can be found at www.cfsresearch.org by clicking on CFS/M.E. and then on my name. This paper discusses the biochemical connections between the
partial methylation cycle block and the whole range of symptoms of CFS, and argues that this partial block is the root cause of them. I think that the success that people are having with this type of treatment is good evidence that this hypothesis is largely valid.

With regard to the mitochondria, there is good reason to believe from the biochemistry that glutathione depletion and a methylation deficit are the root causes of the mito dysfunction in CFS. Glutathione depletion can account for the oxidative stress that damages the mito membranes and blocks the Krebs cycle, as well as the build-up of toxins in the mitos, all of which has been observed by Dr. Howard's testing at Acumen. Note also that his testing usually shows glutathione depletion in the red blood cells. In addition, methylation is necessary to synthesize both carnitine and coenzyme Q-10, which are needed by the mitos and are found to be deficient in CFS.

Glutathione injections are not a permanent fix for glutathione depletion in CFS. In order to bring glutathione back up to normal on a permanent basis, it is necessary to lift the partial methylation cycle block, which is upstream of glutathione synthesis in the sulfur metabolism. I found this out the hard way, after several years of trying to help people to raise glutathione by more direct means, including the injections.

I note that Dr. Myhill has incorporated support for the methylation cycle in her overall protocol, though I don't think she sees it as the root cause of the mito dysfunction.

Gut problems sometimes need addtional treatment, however. If the gut is not able to absorb nutrients or to excrete toxins well, then the methylation cycle treatments will have difficulty working, especially since they involve oral supplements and since they will provoke mobilization of stored toxins as the detox system comes back into operation.

Anyway, all of this is for real, and more information is available at the website I mentioned above.

Best regards,

Rich

It is funny you mention the glutathione treatments. 1.5 years ago my wife visited Dr. Salvato here in Houston and she did the Glutathione injections and IV. It was expensive, painful, and ineffective. It seemed to make her worse. She gave us some literature that you wrote and she is still practicing based on your old research. I don't know if you are in contact with Salvato, but you may reach out to her. I don't know if she can make money off of your protocol though. She is definitely running a "business".

I became interested in your protocol and FREDDDs at the same time. It seems very similar. I may switch over to the multivitamin and do a hybrid between you and FREDDD's approach.

I chose FREDDD's because it seemed logical to use the 2 "natural" b12's and it seemed more likely to work (even though it is 15 supplements instead of 5). I needed this to work to build momentum and get my wife on board. My wife is impatient and she wasn't excited about taking all these supplements from "internet doctors". I think she is a believer now and we are going to "fine tune" the protocol for long term healing.

I know you had some thought that MB12/adb12 may transport mercury? The multivitamin is appealing so she doesn't have to take so many pills, carry around huge pill organizers, and I don't have to fool with re-ordering, loading the pills, etc....

Do you suggest people continue your protocol indefinitely? Any changes or tweaks once the majority of the healing takes place?

Also, we plan on having children now that she is off of the Xanax, klonopin, and ambien. Are any of these supplements known to be bad for pregnancy?

Thanks.

 

[Shellbell]

Red04, congratulations to you and your wife. This is great news and I hope she continues to heal. Please keep us posted on her progress. Well wishes for a baby!!

 

[bluezone]

I was wondering whether someone can please help me because I am in a real catch 22. Like Fredd I had a serious b12 deficiency issue and at one point had foot drop and some other rather nasty neurological issues. Whilst at first I recovered by about 90% with b12 shots (hydro), I slowly started becoming worse and worse. Every time I did a b12 blood test, it showed that I had over 2000. I decided to try out Fredd's protocol and it seems to have worked upto a point, only after I managed to track down some seriously expensive methylcobalamin 5mg/ml vials. A high intake of folate seems to also have helped. I would really appreciate if anyone could give me any idea of what exactly is going on here and if they could please answer the following questions:

1. Should I take folate on an empty stomach? I take 4800mg a day, should I take it at the same time as the b12 shot? and every time I take a shot?
2. Does anyone know where I can purchase methylcobalamin in the UK?
3. I know my glutathione experiment, whilst it cleared a lot of the brain fog it induced a b12 deficiency state; but why did chlorella, glycine and recently dhea also induce b12 def? Dhea was the worst of the three and I am in a really bad way at the moment with a lot of weakness in my legs. Having said that DHEA cleared all of my mcs symptoms (brain fog etc...) I believe I might have a transportation issue where the b12 can not get to my cells efficiently. Does this seem right?

I am in a constant battle between weakness in my legs and brain fog.

Any advice/help will be greatly appreciated.

Many thanks

 

[Vegas]

A few thoughts

Chorella might have mobilized some metals from the gut thus requiring greater need for the b vitamins. Also perhaps the DHEA results in excessive dopamine stimulated methylation. Alternatively, maybe the supplemental DHEA reduces the endogenous production of DHEA causing an increase in homocysteine and a greater need for folate and B12. Many with fatigue react poorly to DHEA, I certainly did. It acts like a stimulant, so I am fairly certain it will place demands on glutathione. I would recommend discontinuing this. Artificial energy is bad. I had plenty of leg weakness, but never frank neurological palsies like foot drop. Do you have a B12 deficiency diagnosis or CFS? Perhaps you need to reduce the chelating substances too. Someone please feel free to correct me if this is wrong.

 

[cigana]

for Rich (and Fred and others)

Thankyou all (especially Rich and Fred) for all your hard work, it is really appreciated! I am adding my story in case it helps anyone:

In short I came down with CFS following 10years as a mostly vegetarian (two of the last of which were as a vegan), eating meat rarely, about once a month. That may be coincidence, but it was enough to convince me in the beginning that I really had B12 deficiency, not CFS. I began supplementing with cyanoB12 (oral) and immediately had a huge reaction - extreme fatigue for a few days which I have never really recovered from. I also had a number of classic B12 symptoms exacerbate (tingling sensations etc.) as a result. A few weeks later I leanred that mB12 was more effective and I began sublingual supplementation - it was around this time that many of my symptoms began to clear up, including brain fog and burning hands/feet which I am now mostly free of.

I supplemented with both cyanoB12 and mB12 for the ensuing 3 months or so, but decided the b12 had done all it was likely to do by that time and reduced my dose to 1mg sublingual mb12 about twice a week. Soon afterwards my fatigue increased slowly for a few months. When I came across your treatment plan I began on:

1/4 Intrinsi B12 (soon to switch to ActiFolate)
1/4 FolaPro
2000ug Perque hydroxyB12 sublingual
1 phosphatidylserine complex

I did this for 3-4 weeks and stopped my mB12 sublinguals because of the mercury concern, though there is 400ug mB12 in my daily multi-vitamin. I noticed no change in symptoms.

I had a biological dentist test for mercury in my mouth and he said there was none, so I decided perhaps the mB12 wouldn't be so bad, after all it had helped me before, so I took 1mg sublingual. A few hours later I had more energy than I'd had in months, it was very noticeable. I took more mB12 on the days that followed for about a week (3-6mg mB12 a day, with 3mg adB12 also), but also did more exercise than I was used to and crashed. That brings me up to the present. Now I'm concerned the crash may have been due to too much mB12, it's not "detox", I just feel more tired. I have never reacted to any supplement even in large doses (except B12 originally, as mentioned).

It seems to me then that I need active folate and mB12 sublingual to get a reaction (either on their own produced no observable effect). I hope to do the methylation pathways panel done so I can find out if I'm now over-methylating.

Perhaps I'm posting this too early (I've only been on the protocol 3-4weeks), but I thought my apparent need for mB12 sublingual to get a reaction of any sort might be worth mentioning...

I'll keep people updated.

Thanks for reading,

Cig

 

[Mr. Cat]

Hello Freddd and others,

I've been on the B-12 protocol for 1.5 weeks so far, with no bad startup effects so far. Noticeable effects seem to be a bit more energy and what may be a greater tolerance for SAM-E (I was previously limited to taking 200mg 3-4x/week or else I would be too wired, but I have been taking it daily so far with no noticeable effects.)
I'm wondering if the two sublinguals - methyl b12 and dibencozide - can be taken simultaneously. I didn't have strong reactions to either, and have been taking them both together for a couple of days with no ill effects, but wanted to check in about this. Also wanted to check in about upping folate. I doubled it to 1600 with no effects. I've seen others on this thread up it to 3200/day; is the protocol to experiment with greater doses of folate in the early stages until effects are felt?

Thank you

 

[velha508]

Hi bluezone,

I may be able to help with one of the questions.

what Fred has said and what worked for me was to take the methylfolate on an empty stomach and time it before your injection - it can vary from 30 minutes or an hour to 1.5-2 hours. I think this depends on your digestion and metabolism - the way to identify the methylfolate peak is to take note of the color of your urine.

MethylB12 leaves a distinct ''reddish" color to your urine, when the methylfolate dose is sufficient and timed correctly the color (that is, the amount not absorbed by your body, but captured and washed out by your kidney's) will be reduced and so will the color...

I too take 4800 mcg per day. I take it in two doses (with two shots) about 1.5 hours before my shots and this works fairly well for me...also, glutathione and precursors did seem to increase my need for methylfolate (i took glutamine against protocol to try to help my digestion)

Regarding the brain fog - have you tried all the co-factors, all in place at the same time? I personally found that a large part (maybe all?) of my brain fog was related to poor digestion (overgrowth of fungus and bacteria and related leaky gut) and that prior to getting my digestions fixed taking higher doses (5 x adB12 per day all at once) helped clear out a substantial amount of this fog.

I think a lot of these things are individual, so each person needs to take the basic protocol and experiment with it. For example, Fred noticed an improvement with 500 mg of carnitine fumarate and no more made any difference. I noted nothing with 500 mg, but at 5 g (2.5 g, 2x per day) the improvement in my energy was astounding! I've since cut back on this a lot, I believe my need decreased as my body healed but I took this high dose daily for about 3/4 of a year.

I would suggest experimenting and keeping notes. This was how I realized I needed the increased carnitine...
Velha

 

[velha508]

Red04,

We are all different, but I wanted to share my experience just in case...

I had slow onset CFS, just gradually got more and more tired over ~5-7 years. I was fine energy wise, actually a lot better, during my first pregnancy and I was unknowingly/unintentionally supplementing with a jarrow brand methylB12 supplement that I believe helped a lot. However, some of the neurological symptoms - pain and numbness in my feet and certain toes became worse during this pregnancy.

I became pregnant with my second pregnancy soon afterwards. I was not supplementing with the jarrow mB12 anymore, as things go, I didn't realize the importance and stopped taking it for other reasons. The pace of my slow onset CFS seemed to rapidly increase during this pregnancy. I was completely exhausted and near the end brain fog started setting in. After the baby was born, while nursing it literally felt as if the life was being sucked out of me.

Things eventually got so bad that I started searching and found Rich and Fred's protocols. I decided to try Fred's and I am now way better than I was for years prior to the pregnancies. I've been on the protocol just over a year.

I only mention this, not to discourage you from the pregnancy, but just to make you aware of the impact it could have as any nutrient 'holes', so to speak, could become more pronounced during this time. Now that I am feeling better I would love to have another child, but I am still somewhat fearful...

I've heard Rich talk about some CFS patients who were actually normal or more normal during pregnancy, this could be related to specific genetics, so there is no reason to think that pregnancy would be 'bad' for all of us...


Take care,
Velha

 

[velha508]

Cigana,

What you've described is a very common phenomena - once you've gotten the mB12 and methylfolate (and possibly other things in place), your body starts up a whole lot of things it hasn't before. This can and typically does create other deficiencies which can lead to returning to fatigue!

This happened to me in particular with the adB12, I felt great at first and had a lot more energy (this is all in relation to what I was feeling then, great at that time is still a WHOLE lot less great than I feel now!!).

You need to follow Fred's full protocol if you want to avoid deficiencies of other things - basic vitamins and also the mitochondrial co-factors. When one has CFS, they are not producing enough energy - this means an issue with your mito, thus other mito support nutrients (d-ribose, carnitine fumarate, alpha lipoic acid, others) can come into play here.

Fred recommends you have everything in place and feel well prior to dropping things. This is what I did, I also had to play with doses of certain things considerably prior to really starting to feel well. In addition I needed prescription amino acids, so while the protocol is very helpful to a large number of people there is still personalization that comes into play.

Read this link and try the suggestions, don't give up now, the fact that you had such a strong reaction initially shows this is an issue for you...

http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

Velha

 

[LaurieL]

MethylB12 leaves a distinct ''reddish" color to your urine, when the methylfolate dose is sufficient and timed correctly the color (that is, the amount not absorbed by your body, but captured and washed out by your kidney's) will be reduced and so will the color...

I am up to and maintaining 30 000 mcg's throughout the day of the methyl B12. My urine is not discolored in the manner referred to here. But I am also taking 3200 mcg's of methylfolate throughout the day as well, and I do take it at the same time as the methyl and ad B12's. So this would mean to me that the timing of these doses for me and the absence of the red tinge to urine, would be my body is absorbing the methyl b12?

Laurie