B-12 - The Hidden Story

[aquariusgirl]

Pokerplayer
Some of the brain fog...could be metals being mobilised. It makes me v. spacey.
Example. I took a shot of 25mg/ml hydroxy B12 plus 5mg of methyl the other day. A couple of hrs later I was walking to the store & felt incredibly spacey.
I turned around and went home, popped 5 EDTA & 1 OSR1. Cleared right up.

Secondly, we know from testing that when ppl first start supporting methylation, their glutathione goes down....not up....so maybe the muscle sensations = increased inflammation?.
So while you're getting the benefits of methylation in many regards, you are also increasing oxidative stress.
Maybe it would be smart to supplement glutathione @ this point.....Dr Amy Yasko has reasons why you shouldn't which you can research.
Rich Van K has encouraged ppl to supplement glut to offset increased excitotoxicity.
I am sure you could find more on that on this thread.

Personally, I am beginning to think it is smarter to get toxin & viral load down before supporting methylation... but I am not sure.

But that's what Klinghardt says.

 

[Shellbell]

Aquariusgirl, my question is, how do we get toxic load down if we can't detox in the first place and methylation is blocked? Don't we need methylation for detoxing? Sorry if this sounds like a stupid question.

I have tried detoxing for 2 years without much success using various methods minus doing anything like the methylation protocol. Always too sensitive to take vitamins/minerals. My current doc's view is to get nutritional status up to par, which includes treatment similar to the methylation protocol. Then he addresses any other issues if they arise and does extra detox, if needed.

I started the b12 protocol this week (after working on my gut for the last 5 months which resulted in a bit of success). Gut treatment gave me back some functionality. I am starting very slow, but trying to get in most of the nutrients as soon as possible as to not create other imbalances. Viral load has always been low, digestive issues/toxins/deficiencies are my problem. So I don't have the viral component to deal with right now, but feel if I don't get started with something, I will develop this problem as well.

Any attempt at detox drives my nervous system crazy and severe fatigue overwhelms me landing me in bed. Glutathion IVs being the worse of it. Can't (and don't want to) take any meds to control nervous system. For help, I do EFT, meditation, and use the art of distraction when able. I also use some homeopathic remedies which sometimes help.

I hope I can just hang in there and get past the worst of the situation. I went through a hard time getting on my digestive supplementation. I am now up to full doses with no problems. It isn't much (digestive enzymes, beta plus, hcl, and antronex). But it is a start from where I was at.

Now, I feel it is time to start replenishing my body's deficiencies. Doc is really harping me on this and says it is time. I also have done and will continue to do acupunture, medical qi gong, and chiropractic work which brought me great relief to my body pain. It also helped a little with anxiety, but not much to date. I also started using the chi machine a couple of months ago. (It belonged to my dad and was just sitting around the house. I thought I would give it a try.) It really helps keeps body pain away too and gives me a bit of energy. I use it 3x a day.

One thing I have noticed is a huge connection to my gut dysfunction and CNS issues. I am on an allergy free diet and drink lot's of bone broth. Tests show I have some dysbiosis. Had parasites over year ago, test came back negative after treatment with homeopathic remedies and is still coming up negative. But I know that more will need to be done in gut department. Taking it step by step.

 

[Freddd]

Hi Fredd

Thought I would update you on how things are going.

I am 10 days into adding the 800 mcg Metafolin, 2500 mg MethylB12, 3000 mg AdnB12 and one L Carnitine Fumerate. I have definitely noticed an improvement in energy, I don't want to sit around all the time, I need to get up and do some things.

However I still cannot walk very well for more than 10 minutes before the energy runs out of my body, the extra 5 minutes it takes me to walk round the park on most days really takes the energy and I notice a nasty sore throat comes back with the depleted energy (this is during the afternoon).

The only really bad day I had was when I took about 1200 mg of an antiviral called Acyclovir. It gave me a horrendous toxic feeling like I was on speed, terrible calf pains and raised heartbeats and insomnia/panic. No way will I take anymore of that I want to carry on with the methylation supplements and give it more time. I feel the Alcyclovir somehow upset the potassium/sodium balance. I do take extra potassium plus extra sea salt cos I loose salt because of adrenals that don't function (on the Pred and Fludro),

Do you have any suggestions for additions or should I stick with things as they are. I have added 1/4 methylb12 after lunch but it didn't seem to do anything more. I also take lots of other supplements including 5000 iu Vitamin D.

In general I definitely feel better in myself and that has to be a good sign.

Pam

Hi Pam,

However I still cannot walk very well for more than 10 minutes before the energy runs out of my body,
That is entirely normal in this recovery. The only difference between a 10 minute walk and a 60 minute walk is building the muscles back up. Without the adb12 several things appear to happen. The muscles loose mitochondria, new muscle cells are not formed and there is a minimizing of muscle mass and ability to generate energy. You have no more capacity now than you did a month ago. That has to be rebuilt. When the muscles are stimulated they build more muscle and more mitochondria in existing muscle. At the beginning when I started walking to rebuild the muscle I went one driveway further, about 75 feet, each day (suburban area). In 12 months I worked up from 500 feet to more than a 5 miles. I started with 1 pound dumbbells and worked up from there. It was slowest at first and then picked up speed. Right now I could go from my present level to a 5 mile run in 6 months or so except for my knees, so I use a Nordic Track ski machine or swimming for aerobic training.


have added 1/4 methylb12 after lunch but it didn't seem to do anything more.

Exactly. That is why I have suggested such as a way to increase the mb12 saturation of the body over time without increasing startup responses. Perhaps you might want to try 5mg mb12 single dose which increases "depth" of penetration" instead of the spread out doses which increases "width" of penetration by keeping the serum level more level for the day.

Mb12 response is dose proportionate. It appears that each doubling of dose above 1000mcg sublingual (200mcg injected) increases healing response by about 50%, a diminishing series. The peak body effect is reached at approximately 15-25mg sublingual single dose. Then there is noting more until about 50mg in a single dose when the CNS effect kicks in for those with specific CNS cobalamin problems.

One has to watch that calcium-potassium-magnesium balance. It can get out of whack so easily. For me it fluctuates and causes problems. Each time I get things stable for a while, something changes and I have to redo the balancing. It does change because of the healing itself too.

Look into more vitamin C. I take 6000-8000mg daily currently and before mb12 had to take 16,000mg per day to keep all those infections, throat and otherwise, under control.

It sounds like things are going along well. Healing goes on for a good year or more, and the counter starts over each time you increase Metafolin or various things. You may find that more Metafolin makes a huge difference. Determine what your leading edge folate deficiency symptoms are for instance.


You seem to be taking care of the 1% inspiration, now comes the 99% perspiration. Physical and neurological rehabilitation is the tough part. They take effort and work but payoff well.

 

[Freddd]

Pokerplayer
Some of the brain fog...could be metals being mobilised. It makes me v. spacey.
Example. I took a shot of 25mg/ml hydroxy B12 plus 5mg of methyl the other day. A couple of hrs later I was walking to the store & felt incredibly spacey.
I turned around and went home, popped 5 EDTA & 1 OSR1. Cleared right up.

Secondly, we know from testing that when ppl first start supporting methylation, their glutathione goes down....not up....so maybe the muscle sensations = increased inflammation?.
So while you're getting the benefits of methylation in many regards, you are also increasing oxidative stress.
Maybe it would be smart to supplement glutathione @ this point.....Dr Amy Yasko has reasons why you shouldn't which you can research.
Rich Van K has encouraged ppl to supplement glut to offset increased excitotoxicity.
I am sure you could find more on that on this thread.

Personally, I am beginning to think it is smarter to get toxin & viral load down before supporting methylation... but I am not sure.

But that's what Klinghardt says.

Hi Aquarius girl,

Increased inflammation appears to be tied to both Hydroxcbl and lack of Metafolin. Mb12 brings inflammation down rapidly if there is enough Metafolin and cofactors because the inflamed tissue actually heals, rapidly. This can easily be measured with the C-reactive protein test. Glutathione causes a massive increase in inflammation when it causes abrubt serve methylfolate deficiency and active b12 deficiencies which appears to happen quite reliably in many people starting within hours of a sufficient dose. As it increases all sorts of inflammation including allergic response and asthma I would suggest the possibility that glutathione increases histamine considerably and very rapidly. I know of at least 1 researcher in these things that has told me that "I don't believe there is any safe way to take glutathione". That was certainly my experience. Taking glutathione precursors for 6 weeks caused me a solid 2 year setback. It was the worst mistake I ever made except for becoming vegetarian. Mb12 itself protects against excitotoxicity from glutamate at the very least and possibly other things. As mb12 is destroyed in the process that is one reason of needing more mb12.

 

[Freddd]

Aquariusgirl, my question is, how do we get toxic load down if we can't detox in the first place and methylation is blocked? Don't we need methylation for detoxing? Sorry if this sounds like a stupid question.

I have tried detoxing for 2 years without much success using various methods minus doing anything like the methylation protocol. Always too sensitive to take vitamins/minerals. My current doc's view is to get nutritional status up to par, which includes treatment similar to the methylation protocol. Then he addresses any other issues if they arise and does extra detox, if needed.

I started the b12 protocol this week (after working on my gut for the last 5 months which resulted in a bit of success). Gut treatment gave me back some functionality. I am starting very slow, but trying to get in most of the nutrients as soon as possible as to not create other imbalances. Viral load has always been low, digestive issues/toxins/deficiencies are my problem. So I don't have the viral component to deal with right now, but feel if I don't get started with something, I will develop this problem as well.

Any attempt at detox drives my nervous system crazy and severe fatigue overwhelms me landing me in bed. Glutathion IVs being the worse of it. Can't (and don't want to) take any meds to control nervous system. For help, I do EFT, meditation, and use the art of distraction when able. I also use some homeopathic remedies which sometimes help.

I hope I can just hang in there and get past the worst of the situation. I went through a hard time getting on my digestive supplementation. I am now up to full doses with no problems. It isn't much (digestive enzymes, beta plus, hcl, and antronex). But it is a start from where I was at.

Now, I feel it is time to start replenishing my body's deficiencies. Doc is really harping me on this and says it is time. I also have done and will continue to do acupunture, medical qi gong, and chiropractic work which brought me great relief to my body pain. It also helped a little with anxiety, but not much to date. I also started using the chi machine a couple of months ago. (It belonged to my dad and was just sitting around the house. I thought I would give it a try.) It really helps keeps body pain away too and gives me a bit of energy. I use it 3x a day.

One thing I have noticed is a huge connection to my gut dysfunction and CNS issues. I am on an allergy free diet and drink lot's of bone broth. Tests show I have some dysbiosis. Had parasites over year ago, test came back negative after treatment with homeopathic remedies and is still coming up negative. But I know that more will need to be done in gut department. Taking it step by step.

Hi Shellbell,

MB12 deficiency all by itself can cause inflammation and lesions from the mouth to the anus and every part in between. The rapidly regenerating tissues in the digestive system can't reproduce in the absence of mb12 + cofactors and instead break down and malfunction in all sort of ways. There is a tendency, and this is what happened to me with 200 symptoms, to look for 10 or 20 root causes for than many symptoms. I was sent to this specialist and that specialist and took all sorts of worthless expensive medications for things that mb12 repaired. When one looks at all these breakdown effect from lack of b12 it is tempting to chase each of those elusive pathways and try to make each of them behave. However, simply taking b12 and cofactors will allow most of these things to heal and normalize as the various body systems start working correctly where as the people chasing 200 causes never get to the root cause and fix it. When hycbl is taken, that only affects about 1/3 of b12 deficiency symptoms leaving the person with a lot of unexplained and incurable items. When one eliminates 200 active b12 and folate deficiency symptoms, what remains after a year of healing and 2 years of rehabilitation usually has a different cause. For instance, I had all sorts of food sensitivities and an ellimination diet didn't tell me a thing before mb12. After mb12 only one thing remained a sensitivity, milk. After removing that entirely from my diet for a year my digestive system healed. I spent 20 years and $200,000 out of pocket chasing all those separate causes and complexities that actually turned out to all be effects from one cause.

Occam's razor can be a lot of help in all this.

 

[Freddd]

I have a couple questions.

1. I have had numerous concussions as well as many subconcussive blows from football in high school. Is there any way this could be linked to my fatigue or cognitive symptoms? I would like to say I was pretty symptom free for at least 2 years after my last concussion. I do wonder about how methylation and b12 play a role in head injuries, because it seems to be that people with concussions are "more prone" to depression and anxiety disorders, but no one can explain why. I would also like to add that I went through a 2 year period of extreme stress that could also be a large thing to blame, but I am thinking that my concussion history somehow made my body less able to cope with stressors.

2. My symptoms (brain fog, fatigue, anxiety, depression) were clearing up pretty good on the protocol once I added adb12. However, a week later the brain fog slowly came back. I have since added the l-carnitine and d-ribose which have given me a significant energy boost and decent brain fog reduction. Tomorrow I am going to add the TMG (1 gram per day) and then maybe 4 days later I will add the sam-e (200mg). But, I have read that some people do well on higher dosages of adb12 to clear brain fog. I seem to be highly reactive to adb12, but the first week I took nothing but high dosages of mb12 and I saw a little improvement, but the adb12 was very very potent. I have read that some people have to take 3-5x 3000mcg adb12 per day to clear the brain fog. I am thinking about trying this once I get tmg and sam-e in to complete the list of co-factors.

I already take the essentials (bright,c,a,d,etc) and 3x5000mcg mb12 1x3000mcg adb12.

Hi Pokerplayer,

I also have a history of at least 3 concussions, 1 from football, 1 from a bad parachute landing and 1 from a rock thrown at me. The rock incident was the worst day in the history of a particular summer camp. In the course of no more than 10 minutes at multiple locations within the camp I got hit on the head with a rock, a water filled roller was accidently shifted knocking another boy down who almost bit off his tongue, one boy hid on top of a yellow jackets hive and and was massively stung and a boy coming to help me tripped over a tree root and broke his ankle. I ended up carrying the boy with the ankle injury into the infirmary. Of the 3 transport boats we had to the mainland, two were gone already by the time I got the other boy in. It was just as well we were together as there were only 3 boats. I suppose the ski boats could have been used in an emergency. We all ended up at the same doctor's office.

I definitely had several instances of post concussion syndrome as it is now recognized. I know there can be long term effects as well. I don't know how it relates with all these things.

As you see with your experience with mb12/adb12 people can have quite distinctive separate deficiencies. Also, the jaggedness of response tends to level out as some things heal and stop competing for resources and as things come into balance.

 

[bertiedog]

Hi Fredd

Many thanks for your reply and advice. I am very sore and exhausted today because I ended up walking and being on my legs with the energy having run out for about 20+ minute’s yesterday afternoon. Normally I ensure this doesn’t happen but was with a friend and then there were a couple of nasty dogs around had to do a detour. In addition I had done 50 minutes yoga in the morning but was fine after that, it’s the aerobic thing I have the problems with and I am sure you are right that I need to rebuild muscles.

I slept very badly last night and kept waking. Felt a bit dizzy at 12.30 am so took a bit more hydrocortisone. Actually I think I should have taken it BEFORE going to bed cos I am sure I used up all the steroid cos of that walk. It does make it more difficult being dependant on taking tablets to get the necessarily cortisol cos I am never sure. Of course normally the body would give one more cortisol as needed. I have noticed that if I run too low on cortisol at night I can never sleep and have dizzy turns and a tendency to anxiety.

One positive thing is that I had a DEXA scan cos I had been on steroids for 8 years and it showed I have the bones of a 30 year old which isn’t bad seeing that I am almost 63. Guess this shows I must be doing something right and definitely not overdosing the steroids.

I had the Acumen ATP blood test done and it was shown that there was low production and it was rapidly used up. Also there was nickel partially blocking the mitochondria.

So today I have increased MB12 to almost a full tablet and will increase Vitamin C. I am unsure what effects extra Metafolin would give me and uncertain how one knows what the optimum dose is?

I also find that the electrolyte balance gets thrown off very easily and because of the sodium wasting I have to bear that in mind too. Usually I take Lo Salt but sometimes need more sea salt too. I take lots of magnesium and have a high calcium diet. I am sure that the Acyclovir messed up my electrolytes cos of the pain in my calves which took several days to go back to normal.

Thanks for your help

Pam

 

[Mr. Cat]

Freddd,

I have been on the B12 protocol for about 3 months. I seem to be doing better than when I started, but have also thrown some Chinese herbs and Glutamine, which helps with brain fog, into the mix. I tried the test doses of both mB12 and adB12 several times, but never noticed much effect. I have been taking all the vitamins and critical cofactors. The largest effects I noticed were from SAM-e and L-Carnatine, both of which boosted energy and mood. I believe I noticed some positive effect from 5mg of mB12 the first couple of days I started taking it, and not so much afterward, but this could be a placebo effect. In addition to the test doses, I had eventually been upping the mB12 to 20-25mg a day with no effect. This thread is so long, and so much has been said, but I seem to remember Freddd saying somewhere that adB12 could be dropped entirely if the test doses did not have an effect, and that mB12 could similarly be lowered if it was having no obvious effect. I am currently taking all the vitamins and critical cofactors, as well as 5mg mB12 a day, having stopped the adB12 about a month ago with no effect. I have CFS symptoms - is the B12 protocol even for me? I plan to continue with the protocol for a while, but wanted to check in with you about the wisdom of a reduced dose of mB12 and no adB12.

Thanks

 

[Freddd]

Freddd,

I have been on the B12 protocol for about 3 months. I seem to be doing better than when I started, but have also thrown some Chinese herbs and Glutamine, which helps with brain fog, into the mix. I tried the test doses of both mB12 and adB12 several times, but never noticed much effect. I have been taking all the vitamins and critical cofactors. The largest effects I noticed were from SAM-e and L-Carnatine, both of which boosted energy and mood. I believe I noticed some positive effect from 5mg of mB12 the first couple of days I started taking it, and not so much afterward, but this could be a placebo effect. In addition to the test doses, I had eventually been upping the mB12 to 20-25mg a day with no effect. This thread is so long, and so much has been said, but I seem to remember Freddd saying somewhere that adB12 could be dropped entirely if the test doses did not have an effect, and that mB12 could similarly be lowered if it was having no obvious effect. I am currently taking all the vitamins and critical cofactors, as well as 5mg mB12 a day, having stopped the adB12 about a month ago with no effect. I have CFS symptoms - is the B12 protocol even for me? I plan to continue with the protocol for a while, but wanted to check in with you about the wisdom of a reduced dose of mB12 and no adB12.

Thanks

Hi Mr Cat,

"Test doses"? Do you mean the 50-51mg CNS/CSF doses after reaching body equilibrium and having all the critical and basic cofactors on board and reasonably optimized?

If it's those test doses, each done separately, have no effects at all that would appear to indicate that the larger injectable doses are not likely to help. Not everybody as a tough to penetrate CSF/CNS for cobalamin. The responses looked for are subtle, basically any reaction. Typically a person might only have a noticeable reaction to adb12 once, the first time only. However, any response is a response. Adb12 lasts longer and so is not as easily repeatable in having startup responses.

So are you using the Jarrow 5mg? The country life 3mg? Are you taking the l-carnitine fumarate on an empty stomach? Are you making the sublinguals last 2 hours each? What dose of Metafolin are you taking?

What is your list of symptoms that is a hit on the symptoms list and what do you have that doesn't show up on the list at http://forums.wrongdiagnosis.com/showthread.php?t=62327

And while your there read the basics and make sure of what you are doing.

 

[Mr. Cat]

Hi Fredd,

Yes, I did the 50mg mB12 and 51mg adB12 CNS/CSF doses each 2 times, about a month apart, after following the basic protocol for 4 weeks. The larger doses didn't have any notable effect. I think I may have noticed a tiny effect from the first day or so of 5mg mB12, and never noticed anything from the adB12. I've been using Jarrow 5mg mB12, and was using the 3mg Country Life adB12 before I stopped about a month ago. Yes, I have been taking sublinguals from 45min-2 hours, usually towards the longer end. I take all the critical cofactors on an empty stomach, and of them, L-Carnitine, as well as SAM-e, seem to have an effect, as I found by gradually introducing them into the B12 protocol. I'm taking one 800mcg metafolin now on an empty stomach, about 1.5 hours before the mB12, but had been taking up to 3200/4000 a day, with no notable effect. I am currently taking 5mg mB12, all the recommended vitamins and all critical cofactors, with the exception of d-ribose. Additionally, I am taking a mix of Chinese herbs, and glutamine for brain fog. Do you see any point upping the mB12 or metafolin again or re-adding adB12?
Following are some symptoms from the list that apply/ have applied to me:

canker sores
sore muscles
exercise deblitates for up to a week, making things much worse
Dairy sensitivity
depression
mental slowing
chronic malaise
poor concentration
tiredness
impaired connection to others
mentally fuzzy, foggy, brainfog
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to temperature changes
Hypersensitivity to foods
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
non restorative sleep
lack of dreaming
intolerance to loud sounds
white cell changes, low count
dandruff
splits/sores at corners of mouth (occasionally)

The only symptoms I have that don't show up on the list are an achiness in the kidney/adrenal area when fatigued, and a recent (2 months or so) tiredness/achiness in the center of my upper back (behind the heart chakra) that seems to "block" energy from flowing smoothly, be related to brain fog, and make me tired.

Thanks a lot for your consideration.

 

[Freddd]

Hi Fredd,

Yes, I did the 50mg mB12 and 51mg adB12 CNS/CSF doses each 2 times, about a month apart, after following the basic protocol for 4 weeks. The larger doses didn't have any notable effect. I think I may have noticed a tiny effect from the first day or so of 5mg mB12, and never noticed anything from the adB12. I've been using Jarrow 5mg mB12, and was using the 3mg Country Life adB12 before I stopped about a month ago. Yes, I have been taking sublinguals from 45min-2 hours, usually towards the longer end. I take all the critical cofactors on an empty stomach, and of them, L-Carnitine, as well as SAM-e, seem to have an effect, as I found by gradually introducing them into the B12 protocol. I'm taking one 800mcg metafolin now on an empty stomach, about 1.5 hours before the mB12, but had been taking up to 3200/4000 a day, with no notable effect. I am currently taking 5mg mB12, all the recommended vitamins and all critical cofactors, with the exception of d-ribose. Additionally, I am taking a mix of Chinese herbs, and glutamine for brain fog. Do you see any point upping the mB12 or metafolin again or re-adding adB12?
Following are some symptoms from the list that apply/ have applied to me:

canker sores
sore muscles
exercise deblitates for up to a week, making things much worse
Dairy sensitivity
depression
mental slowing
chronic malaise
poor concentration
tiredness
impaired connection to others
mentally fuzzy, foggy, brainfog
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to temperature changes
Hypersensitivity to foods
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
non restorative sleep
lack of dreaming
intolerance to loud sounds
white cell changes, low count
dandruff
splits/sores at corners of mouth (occasionally)

The only symptoms I have that don't show up on the list are an achiness in the kidney/adrenal area when fatigued, and a recent (2 months or so) tiredness/achiness in the center of my upper back (behind the heart chakra) that seems to "block" energy from flowing smoothly, be related to brain fog, and make me tired.

Thanks a lot for your consideration.

Hi Mr Cat,

Can you annotate the list of symptoms as to degree of improvement of each. The ones you have listed do so some specific characteristics. Then we can talk about things to try. Also, how old are you? Are you or have you been vegetarian"?

 

[Mr. Cat]

Freddd,

I'm 35, and have had CFS symptoms for about 18 years. I was a vegetarian for 4 years or so in my late 20s to early 30s, and it really wrecked me - low iron levels, low energy, etc., and I've been eating low amounts of meat since then and doing better. Energy comes and goes - I had a period of increasing energy, even doing some physical exercise, for the first 8 months or so of 2010, then had a 6-month crash from about September of 2010, which I'm just starting to recover from. I started the B12 protocol as a result of this latest crash. Here are my symptoms. Most have shown improvement in the last 3-4 years.

canker sores (come and go, getting better due to treatment with Chinese herbs)
sore muscles, fatigue symptoms (have come and gone. Last year was the best I'd felt in years before my September crash, and I've improved somewhat since the crash)
Dairy sensitivity (better, but still there)
depression (much better. SAM-e, L-Carnitine and the right Chinese herbs help)
mental slowing, poor concentration, mentally fuzzy, foggy, brainfog (Always somewhat there when fatigue exists, but I had a severe attack of brain fog, a new symptom for me, from 6 months ago, which has since somewhat receded)
impaired connection to others (Comes and goes. The more fatigued I am, the less connected to others I feel.)
Hypersensitivity to light and visual stimuli (Better - used to feel a burning sensation on my skin from direct and indirect sunlight and artificial lights)
Hypersensitivity to blood sugar changes (Can still crash easily from lack of carbs - gets worse as fatigue symptoms do)
Hypersensitivity to temperature changes (Circulation better, no longer as sensitive)
Hypersensitivity to foods (recovering from severe multiple food sensitivities 2000 - 2008. Still intolerant of many foods, but much better since changing my diet)
non restorative sleep (getting better as fatigue lifts)
lack of dreaming (getting better)
intolerance to loud sounds (Not sure how "intolerant" I am, but my nervous system does get rattled.)
white cell changes, low count (White and red have always tested low, don't have improvement data)
dandruff (noticed since adolescence)
splits/sores at corners of mouth (occasionally, usually linked to dry weather)

One additional diagnostic piece: Before starting the B12 protocol, I took SAM-e for depression. It worked sporadically, sometimes greatly boosting my mood for a few hours, sometimes doing nothing at all. I could only take 200mg every other day, because if I took too much, I would feel anxious and wired. Since being on the B12 protocol and accompanying critical cofactors, the SAM-e has been both more effective in boosting positive mood, and I can tolerate more of it without the anxiety/wired feeling. I am currently taking 200mg every day. I was even experimenting with 400mg/day for a while during the first month of the protocol, but this was waking me up in the middle of the night, so I reduced the dosage. I'd also like to hear your opinion on what might be going on with the improved SAM-e tolerance/effectiveness.

Thank you

 

[Freddd]

Freddd,

I'm 35, and have had CFS symptoms for about 18 years. I was a vegetarian for 4 years or so in my late 20s to early 30s, and it really wrecked me - low iron levels, low energy, etc., and I've been eating low amounts of meat since then and doing better. Energy comes and goes - I had a period of increasing energy, even doing some physical exercise, for the first 8 months or so of 2010, then had a 6-month crash from about September of 2010, which I'm just starting to recover from. I started the B12 protocol as a result of this latest crash. Here are my symptoms. Most have shown improvement in the last 3-4 years.

canker sores (come and go, getting better due to treatment with Chinese herbs)
sore muscles, fatigue symptoms (have come and gone. Last year was the best I'd felt in years before my September crash, and I've improved somewhat since the crash)
Dairy sensitivity (better, but still there)
depression (much better. SAM-e, L-Carnitine and the right Chinese herbs help)
mental slowing, poor concentration, mentally fuzzy, foggy, brainfog (Always somewhat there when fatigue exists, but I had a severe attack of brain fog, a new symptom for me, from 6 months ago, which has since somewhat receded)
impaired connection to others (Comes and goes. The more fatigued I am, the less connected to others I feel.)
Hypersensitivity to light and visual stimuli (Better - used to feel a burning sensation on my skin from direct and indirect sunlight and artificial lights)
Hypersensitivity to blood sugar changes (Can still crash easily from lack of carbs - gets worse as fatigue symptoms do)
Hypersensitivity to temperature changes (Circulation better, no longer as sensitive)
Hypersensitivity to foods (recovering from severe multiple food sensitivities 2000 - 2008. Still intolerant of many foods, but much better since changing my diet)
non restorative sleep (getting better as fatigue lifts)
lack of dreaming (getting better)
intolerance to loud sounds (Not sure how "intolerant" I am, but my nervous system does get rattled.)
white cell changes, low count (White and red have always tested low, don't have improvement data)
dandruff (noticed since adolescence)
splits/sores at corners of mouth (occasionally, usually linked to dry weather)

One additional diagnostic piece: Before starting the B12 protocol, I took SAM-e for depression. It worked sporadically, sometimes greatly boosting my mood for a few hours, sometimes doing nothing at all. I could only take 200mg every other day, because if I took too much, I would feel anxious and wired. Since being on the B12 protocol and accompanying critical cofactors, the SAM-e has been both more effective in boosting positive mood, and I can tolerate more of it without the anxiety/wired feeling. I am currently taking 200mg every day. I was even experimenting with 400mg/day for a while during the first month of the protocol, but this was waking me up in the middle of the night, so I reduced the dosage. I'd also like to hear your opinion on what might be going on with the improved SAM-e tolerance/effectiveness.

Thank you

Hi Mr Cat,

Can you further break down the types of muscle pain(s) as best you can.

1 - burning muscle pain
2 - accumulating muscle pains following exertion
3 - sore muscles throughout body
4 - lack of muscle recovery after exercise
5 - exercise does not build muscle
6 - extremely sore neck muscles reversing normal curvature of neck
7 - frequent muscle spasms anywhere in body
8 - muscle pain especially around attachment points to bones
9 - Eighteen severely tender muscle spots of FMS


Regarding SAM-e -

Lack of SAM-e is not a root cause. While it will push the cycle in a way, if enough other cofactors are present, it doesn't fix the problem. Rebuilding the recycling portion of the methylation loop changes the homocystein back to methionine, and then with ATP to SAM-e. When I first started SAM-e, after mb12 but before Metafolin and TMG, 400mg made a huge difference. Now after getting everything else working and in balance 200mg has a much smaller effect because SAM-e is being internal produced in the normal functioning of that part of things. Why I still respond to any I couldn't tell you.

Overall, I would suggest that most everything that has changed so far will continue to do so until mostly or entirely gone. The answers on the muscle pain will clarify some things or maybe induce new questions or both.

 

[Mr. Cat]

Hi Mr Cat,

Can you further break down the types of muscle pain(s) as best you can.

1 - burning muscle pain
2 - accumulating muscle pains following exertion
3 - sore muscles throughout body
4 - lack of muscle recovery after exercise
5 - exercise does not build muscle
6 - extremely sore neck muscles reversing normal curvature of neck
7 - frequent muscle spasms anywhere in body
8 - muscle pain especially around attachment points to bones
9 - Eighteen severely tender muscle spots of FMS

Hi Freddd,

Here is a breakdown of my muscle pain symptoms:

1 - burning muscle pain
Not burning, more like achy and fatiguing. I used to get an achy feeling around the lower back area near my kidneys/adrenals, but over the last couple of months, I feel achiness and it seems like the energy is blocked around the spine on the center of my upper back, a little above my chest center, and is linked to fogginess in my brain, though there isn't always brain fog when this occurs.
2 - accumulating muscle pains following exertion
Yes. When I used to do any sort of strenuous physical exercise, muscles would be extremely tired, and would take days to weeks of rest to recover both the energy and for the muscles to not be achy. The recovery time has since improved.
3 - sore muscles throughout body
Right now it's mostly the upper middle back. When it gets really bad, it's the lower back, upper back, and other major muscle groups, such as quads and maybe triceps. This can make me tired and mentally foggy. Sometimes this can be partially, temporarily relieved, and I will become a little more alert, by repeated, vigorous stretching of my back and arm muscles.
4 - lack of muscle recovery after exercise
See #2.
5 - exercise does not build muscle
No. I am able to build muscle.
6 - extremely sore neck muscles reversing normal curvature of neck
No.
7 - frequent muscle spasms anywhere in body
No, but when I have achy, tired muscles and allow myself to rest, either by lying down or focusing on the achy muscles, I can feel what feel like streams of energy being released from the sore back muscles, shooting throughout my body, which feels restful and seems to be healing. I can "will" this to happen by concentrating on the muscles, or it will just happen by itself. It is as if the energy is being blocked/stored in these areas and prevented from circulating, and then released when I relax. Sometimes I can feel some relief after 30 minutes to an hour of this, sometimes it takes much longer.
8 - muscle pain especially around attachment points to bones
No.
9 - Eighteen severely tender muscle spots of FMS
No.

After doing some research today, I decided to cut out artificial sweeteners, which I have been using for a couple of years, as they are linked on some sites to brain fog. I will see what effect this has.

Thank you

 

[Freddd]

Hi Freddd,

Here is a breakdown of my muscle pain symptoms:

1 - burning muscle pain
Not burning, more like achy and fatiguing. I used to get achy muscles around my kidneys/adrenals, but over the last couple of months, it seems like the energy is blocked around the spine on the center of my upper back, a little above my chest center, and is linked to fogginess in my brain, though there isn't always brain fog when this occurs.

2 - accumulating muscle pains following exertion
Yes. When I used to do any sort of strenuous physical exercise, muscles would be extremely tired, and would take days to weeks of rest to recover both the energy and for the muscles to not be achy. The recovery time has since improved.

3 - sore muscles throughout body
Right now it's mostly the upper middle back. When it gets really bad, it's the lower back, upper back, and other major muscle groups, such as quads and maybe triceps. This can make me tired and mentally foggy. Sometimes this can be partially, temporarily relieved, and I will become a little more alert, by repeated, vigorous stretching of my back and arm muscles.

4 - lack of muscle recovery after exercise
See #2.

5 - exercise does not build muscle
No. I am able to build muscle.

6 - extremely sore neck muscles reversing normal curvature of neck
No.

7 - frequent muscle spasms anywhere in body
No, but when I have achy, tired muscles and allow myself to rest, either by lying down or focusing on the achy muscles, I can feel what feel like streams of energy being released from the sore back muscles, shooting throughout my body, which feels restful and seems to be healing. I can "will" this to happen by concentrating on the muscles, or it will just happen by itself. It is as if the energy is being blocked/stored in these areas and prevented from circulating, and then released when I relax. Sometimes I can feel some relief after 30 minutes to an hour of this, sometimes it takes much longer.

8 - muscle pain especially around attachment points to bones
No.

9 - Eighteen severely tender muscle spots of FMS
No.

After doing some research today, I decided to cut out artificial sweeteners, which I have been using for a couple of years, as they are linked on some sites to brain fog. I will see what effect this has.

Thank you

2 - accumulating muscle pains following exertion
Yes. When I used to do any sort of strenuous physical exercise, muscles would be extremely tired, and would take days to weeks of rest to recover both the energy and for the muscles to not be achy. The recovery time has since improved.
Body-mb12-adb12-Metafolin-L-carnitine fumarate

3 - sore muscles throughout body
Right now it's mostly the upper middle back. When it gets really bad, it's the lower back, upper back, and other major muscle groups, such as quads and maybe triceps. This can make me tired and mentally foggy. Sometimes this can be partially, temporarily relieved, and I will become a little more alert, by repeated, vigorous stretching of my back and arm muscles.
CSF/CNS-Body-mb12-adb12-Metafolin-L-carnitine fumarate

4 - lack of muscle recovery after exercise
See #2.
Body-mb12-adb12-Metafolin-L-carnitine fumarate


So what this appears to say, in combination with your other symptoms is that you are in relatively early stages of deficiencies, that you have functional CNS deficiencies but are not getting into the CNS possibly permanent damage area yet, most likely, and that you have functional body deficiencies of mb12, adb12, Metafolin and need other cofactors too.

 

[bertiedog]

Hi Fredd

I am very interested in your reply to Mr Cat. My muscle problems seem very similar to his.

Are you saying therefore that its just a matter of time before these things radically improve provided one takes the following on a daily basis –

Metafolin 800 mcg
Methylb12 5 mg sublingual allowing max time for absorption
AdnB12 3 mg as above
B Right 2 daily
L Carnine Fumerate 1 daily
Lots of Vit C and D
Good Multi
EFAs

Basically we cannot rush it and have to be very patient?

Thanks

Pam

 

[undcvr]

Cat, Bertie, have either of you tried Lyrica ? It is for FM.

 

[bertiedog]

Hi undcvr

No I have never tried Lyrica or any othrer drug apart from the steroids I have to take and fludrocortisone plus thyroid meds. Did try Acyclovir for one day but it was a disaster. Never again.

 

[Freddd]

Hi Fredd

I am very interested in your reply to Mr Cat. My muscle problems seem very similar to his.

Are you saying therefore that its just a matter of time before these things radically improve provided one takes the following on a daily basis –

Metafolin 800 mcg
Methylb12 5 mg sublingual allowing max time for absorption
AdnB12 3 mg as above
B Right 2 daily
L Carnine Fumerate 1 daily
Lots of Vit C and D
Good Multi
EFAs

Basically we cannot rush it and have to be very patient?

Thanks

Pam

Hi Pam,

Assuming everything needed for healing is present, the restoration of the ability to exercise to capacity returns. At first that is exactly where it was during the deficiency. The muscles don't appear to grow more mitochondria or increase in mass or even heal without exercising them. Then as they grow, they heal and capacity to exercise increases, slowly at first and more as the process gets going. Rehabilitation is critical in this because otherwise not too much changes. There is also indication that stimulation of the nerves helps them recover function and heal. That was my wife's big complaint, that while I said I felt a lot better, nothing seemed to have changed. I had to walk and do other exercises to provoke healing. It took me a year of healing, then 4 years of rehab to regain much of my capability, and that is still happening 8 years after starting.

 

[Freddd]

Cat, Bertie, have either of you tried Lyrica ? It is for FM.

Hi Undcvr,

I used to take Dilantin, one of the older anti seizure drugs. It worked pretty well for so much of the neurological pain and spasm I had and quieted that down considerably. I was able to discontinue it after 9 months on methylb12 as all the pains it helped with were gone by that time as my nervous system had improved considerably. Lyrica doesn't fix the problem, is quite expensive and gave me considerable side effects. I gained 15 pounds the first week and felt the worst I had in years when my doc asked me to try it to see if it helped me with any of my remaining symptoms. It didn't. I quit after one week. At least the effects didn't linger like glutathione.