B-12 - The Hidden Story

[klutzo]

Agenda 21

Hi Dr. D,
As I recall, we just dropped the subject of Codex, etc., but my memory is not so hot. After all, that is not what this thread is about. I also think the whole subject was too depressing for most sick people to want to continue to discuss, though I think it is imperative that people not only discuss it but take action, and da*n soon.

If you wanted to continue a discussion on this, you could start a thread in the Community Lounge section, since it is not really strictly speaking a "medical" discussion. I, for one, would be interested, and I think at least a few others would also.

klutzo

 

[Freddd]

===
a holistic dr that i visted several weeks ago orders some Standard Process chlorophyll and cataplex b12. I started the chloro several weeks ago. I have not started teh cataplex b12 yet. The ingredient list is a bit scary.....

Freddd do you have any feedback on the Standard process approach....?

Hi DrD.

I don't know much of anything about the Standard process approach. However as their b12 contains 6 mcg of cyanob12 I would expect absolute zero from it.

 

[brenda]

Sunday

Thanks for that. I have looked on the site but could not see the Standard Process supps.

Brenda

 

[winston]

B12

Hi Fredd, I started back on the mb12 on Wednesday. Thursday 1/4 of the 5 mg mb12. Friday 1/2 and Saturday 1/2 after breakfast and 1/4 after lunch. No problem until I started the B-right on Saturday morning and Sunday morning and the nausea began. This morning I did have a little nausea but am not going to take the B-right to see what is causing the nausea. I remember when I first started the B-right their was no nausea and I was on two a day. I was on the b-right for 5 weeks with no problem. I was on the adb12 for 4 weeks with no problem and the mb12 for three weeks with no problem and no nausea. What the heck is going on? How long can I take the mb12 before I need to add anything else? Right now I am really scared again, I have no where else to turn. Can you figure this out?

Lena

 

[Freddd]

Hi Fredd, I started back on the mb12 on Wednesday. Thursday 1/4 of the 5 mg mb12. Friday 1/2 and Saturday 1/2 after breakfast and 1/4 after lunch. No problem until I started the B-right on Saturday morning and Sunday morning and the nausea began. This morning I did have a little nausea but am not going to take the B-right to see what is causing the nausea. I remember when I first started the B-right their was no nausea and I was on two a day. I was on the b-right for 5 weeks with no problem. I was on the adb12 for 4 weeks with no problem and the mb12 for three weeks with no problem and no nausea. What the heck is going on? How long can I take the mb12 before I need to add anything else? Right now I am really scared again, I have no where else to turn. Can you figure this out?

Lena

Hi Lena,

Do you have a problem with your stomach emptying? Have you been prescribed Reglan (metaclopromide)?

 

[winston]

B12

Hi Fredd, I have never taken Reglan. Problem with stomach emptying, I don't know, do you mean bowel movements. I have no problem with that I go 2 to 3 times in the morning.

Lena

 

[winston]

B12

Fredd, check your personal messages.

Lena

 

[Sunday]

I'm two weeks into Freddd's protocol, so I'm here to report. The B-Right made me headachey and brain-cloudy for a couple of days. But I did notice one day when I came home from a class and errands in town, and lay down, I actually recuperated in a couple of hours and wanted - and was able to - get up and do some more things. Nothing involving heavy lifting, but still, this recuperation is not something that has ever happened to me with this illness. Once down, I stayed down, and if I was lucky it was only for the rest of that day.

When I started the adb12 I made a euphoric statement here about how I could feel my senses coming back. That continued, but I also got a dose of fatigue and depression that lasted several days. (Lying in bed I wondered: is depression a symptom of b12 deficiency? Wouldn't it be great if it were that simple?)

It felt to me as if I were responding to food and supplements more like my "old" self (i.e. that I was actually absorbing them) after a few days of adb12.
The truly amazing thing was my energy level; I didn't feel it as manic, but one day last week I realized I had gone to town and class and come home and done some work and housework and not thought to take a rest, and - I was fine. And what's more, I was fine (not great, but fine: and how wonderful fine can feel) the next day. I did crash after three days of this, though: my mitochondria thought I was having too much of a good time, apparently.

Also on the adb12 I felt my feet and hands tingling in the places where I've got neuropathy; this gradually extended itself to my entire lower body. I'd usually feel this when I was lying in bed waking up of a morning. I also reported earlier on my sleep patterns with adb12; like Klutzo (do you capitalize your name?) I was at first unaffected, then found myself staying up later

The mb12, which I've just been doing for a couple of days, has helped me get to sleep more easily (I still have to work at it) and seems to be making my sleep more refreshing. It has also showed me which deficiency creates the nausea; yick. I'm thankful for Freddd's recommendation of taking the lozenge out of your mouth if the symptoms get too bad: this has kept me from throwing up. The nausea - oh yeah I'm remembering it now - is a big factor in slowing me down. I've often thought this disease is a lot like being varying degrees of seasick. I'm getting a bit more of that orthostatic intolerance stuff, too; the dizziness goes along with the nausea for me. (And it clears up why weird blood pressure was the first indicator for this: I had numbers like 110 over 90).

As usual I've been learning a lot on this thread from everyone else's experiences and research. I had to look up "orthostatic intolerance"; it sounds so much snazzier than saying I often have a hard time standing up, and that sometimes I fall over when I try. It also made me think of many milder instances of that weird displaced momentary dizziness that I've had through my life and wonder if they were related to me getting CFS at this point.

On mb12 I've also felt sensations in my hands, feet, and lower body - feels more like increased circulation, distinct from the tingling of adb12 but of course I'm taking both at once so I might not be getting the distinction properly. I'm very grateful to hear I can do both kinds of sublinguals at once, it's a bit problematic getting these all in and timed around food and sleep.

A note on the krill oil: I opted for that since I'm also concerned about pollutants in fish oil; unless you trust the company and know their standards, it's hard to know what you're getting, and none of us needs more heavy metal or pesticides. And it's nice to know that we're not going to run out of krill soon, klutzo! Where we can, I think it's good to take the sustainable option, after all we're all for sustainability here.

Doing this protocol is a weird sensation because while I'm feeling all the crap symptoms (to use the technical term) I'm also feeling my body wake up wake up wake up a few minutes after the b12 lozenges go in my mouth. My moods swing from heaven to hell and back again, my brain flicks off and on (though a lot more on since I started). It's hard to know what's neurological and what's psychological (I'd be a liar if I said I don't hope, on my good days, that this protocol will get me out of the woods forever. But I'd also be lying if I didn't say that, on my bad days, I wonder if I'm delusional). I'm plugging on. I'll see what happens.

 

[klutzo]

sleep patterns and protocol

Hi Sunday,
Looks like you are making great progress. Since I am not Fred and no expert, I will only comment on the part that refers to me.

I do not capitalize my screen name, but you can if you want, no sweat. My sleep pattern has totally changed again as I've gotten used to the supplements. Now, I am falling asleep earlier than I have since junior high school. It's the first time in my 23+ year marriage that I've gone to bed earlier than my husband. I've been a night owl since puberty, but not anymore. I am waking up earlier too, and I shake really badly and feel wired for about two hours, with tons of energy when I wake up. I think my morning cortisol, which has been too low ever since I became ill, is finally normalizing, but has overshot itself and needs to adjust. It will be interestng to see if you change in this way as you go along.....I would guess you won't, unless you had the same screwed up circadian rhythm as I did before this protocol.

klutzo

 

[Freddd]

I'm two weeks into Freddd's protocol, so I'm here to report. The B-Right made me headachey and brain-cloudy for a couple of days. But I did notice one day when I came home from a class and errands in town, and lay down, I actually recuperated in a couple of hours and wanted - and was able to - get up and do some more things. Nothing involving heavy lifting, but still, this recuperation is not something that has ever happened to me with this illness. Once down, I stayed down, and if I was lucky it was only for the rest of that day.

When I started the adb12 I made a euphoric statement here about how I could feel my senses coming back. That continued, but I also got a dose of fatigue and depression that lasted several days. (Lying in bed I wondered: is depression a symptom of b12 deficiency? Wouldn't it be great if it were that simple?)

It felt to me as if I were responding to food and supplements more like my "old" self (i.e. that I was actually absorbing them) after a few days of adb12.
The truly amazing thing was my energy level; I didn't feel it as manic, but one day last week I realized I had gone to town and class and come home and done some work and housework and not thought to take a rest, and - I was fine. And what's more, I was fine (not great, but fine: and how wonderful fine can feel) the next day. I did crash after three days of this, though: my mitochondria thought I was having too much of a good time, apparently.

Also on the adb12 I felt my feet and hands tingling in the places where I've got neuropathy; this gradually extended itself to my entire lower body. I'd usually feel this when I was lying in bed waking up of a morning. I also reported earlier on my sleep patterns with adb12; like Klutzo (do you capitalize your name?) I was at first unaffected, then found myself staying up later

The mb12, which I've just been doing for a couple of days, has helped me get to sleep more easily (I still have to work at it) and seems to be making my sleep more refreshing. It has also showed me which deficiency creates the nausea; yick. I'm thankful for Freddd's recommendation of taking the lozenge out of your mouth if the symptoms get too bad: this has kept me from throwing up. The nausea - oh yeah I'm remembering it now - is a big factor in slowing me down. I've often thought this disease is a lot like being varying degrees of seasick. I'm getting a bit more of that orthostatic intolerance stuff, too; the dizziness goes along with the nausea for me. (And it clears up why weird blood pressure was the first indicator for this: I had numbers like 110 over 90).

As usual I've been learning a lot on this thread from everyone else's experiences and research. I had to look up "orthostatic intolerance"; it sounds so much snazzier than saying I often have a hard time standing up, and that sometimes I fall over when I try. It also made me think of many milder instances of that weird displaced momentary dizziness that I've had through my life and wonder if they were related to me getting CFS at this point.

On mb12 I've also felt sensations in my hands, feet, and lower body - feels more like increased circulation, distinct from the tingling of adb12 but of course I'm taking both at once so I might not be getting the distinction properly. I'm very grateful to hear I can do both kinds of sublinguals at once, it's a bit problematic getting these all in and timed around food and sleep.

A note on the krill oil: I opted for that since I'm also concerned about pollutants in fish oil; unless you trust the company and know their standards, it's hard to know what you're getting, and none of us needs more heavy metal or pesticides. And it's nice to know that we're not going to run out of krill soon, klutzo! Where we can, I think it's good to take the sustainable option, after all we're all for sustainability here.

Doing this protocol is a weird sensation because while I'm feeling all the crap symptoms (to use the technical term) I'm also feeling my body wake up wake up wake up a few minutes after the b12 lozenges go in my mouth. My moods swing from heaven to hell and back again, my brain flicks off and on (though a lot more on since I started). It's hard to know what's neurological and what's psychological (I'd be a liar if I said I don't hope, on my good days, that this protocol will get me out of the woods forever. But I'd also be lying if I didn't say that, on my bad days, I wonder if I'm delusional). I'm plugging on. I'll see what happens.

Hi Sunday,

is depression a symptom of b12 deficiency? Wouldn't it be great if it were that simple?)

Yes, depression is a b12 deficiency symptom but there can be other causes too. Methylfolate, SAM-e, l-carnitine fumarate and other things can all influence it too. For me, b12 just plain lifted a life long depression.

I'm getting a bit more of that orthostatic intolerance stuff, too; the dizziness goes along with the nausea

Clearly part of it too. These things can vary all over the place at first and takes a bit to steady.

On mb12 I've also felt sensations in my hands, feet, and lower body - feels more like increased circulation, distinct from the tingling of adb12 but of course I'm taking both at once so I might not be getting the distinction properly.

I get a warmth to outright hot feeling at times as well as increased tingling. Sometimes after the increased tingling there are outright painfully intense tinglings and jolts. Those are just before feeling tends to improve.

My moods swing from heaven to hell and back again, my brain flicks off and on (though a lot more on since I started). It's hard to know what's neurological and what's psychological

There are a who lot of neuropsyc effects. Moods a very definitely affected. For me the toughest period was as my brain flicked on and I saw with utter clarity what a mess my life had become. Don't be discouraged by that. It's hard on a person to see what happened while their brain was turned off. Don't try to avoid it and don't beat yourself up for it.

It's a roller coaster ride at first. This is a period in which you have to make sure of your potassium. Other things can become deficient too.

My sleep patterns got all sorted out and pretty normal after a while and sleep became restorative after decades of not.

Your energy level will become much more normal as things even out. After a while things like carnitine will reach an equilibrium too. As more and more things reach that equilibrium and some healing aspects complete things smooth out.

I don't know how to make this easy on a person. The good news is that everything that is changing around the most tends to be the things that heal the soonest.

I had to look up "orthostatic intolerance"; it sounds so much snazzier than saying I often have a hard time standing up, and that sometimes I fall over when I try

"She's no fun. She fell right over. " That too shall pass. I can't tell you when exactly for me but at some point it just didn't happen any more. There is no message in lights saying "Pay attention, this is the last time".

Good luck. Keep optimistic. To me, all of your results are very encouraging.

 

[richvank]

To Sunday re: symptoms during treatment

Hi, Sunday.

I was interested to read about what you have been experiencing on the Adenosyl B12 and Methyl B12 treatment, especially your report that you have been experiencing some improvements together with some symptoms.

Just for comparison, the following is quoted from something I posted to the internet groups on July 18, 2007. It summarizes the reports of improvements and symptoms during treatment with the Simplified Treatment Approach that were posted on the ProHealth board by the first group of patients who tried this treatment. Note that this treatment uses Hydroxo B12, 5-methyl THF (same as Metafolin), and some other supporting supplements, so it has some similarities as well as differences in comparison to freddd's protocol.


"The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
3. Termination of excessive urination and night-time urination.
4. Restoration of normal body temperature from lower values.
5. Restoration of normal blood pressure from lower values.
6. Initiation of attack by immune system on longstanding infections.
7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of “crashing.”
8. Lifting of brain fog, increase in cognitive ability, return of memory.
9. Relief from hypoglycemia symptoms
10. Improvement in alcohol tolerance
11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
14. Return of ability to read and retain what has been read.
15. Return of ability to take a shower standing up.
16. Return of ability to sit up for long times.
17. Return of ability to drive for long distances.
18. Improved tolerance for heat.
18. Feeling unusually calm.
19. Feeling "more normal and part of the world."
20. Ability to stop steroid hormone support without experiencing problems from doing it.
21. Lowered sensation of being under stress.
22. Loss of excess weight.


The following reported symptoms, also gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:

1. Headaches, “heavy head,” “heavy-feeling headaches”
2. Alternated periods of mental “fuzziness” and greater mental clarity
3. Feeling “muggy-headed” or “blah” or sick in the morning
4. Transient malaise, flu-like symptoms
5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
6. Dizziness
7. Irritability
8. Sensation of “brain firing: bing, bong, bing, bong,” “brain moving very fast”
9. Depression, feeling overwhelmed, strong emotions
10. Greater need for “healing naps.”
11. Swollen or painful lymph nodes
12. Mild fevers
13. Runny nose, low grade “sniffles,” sneezing, coughing
14. Sore throat
15. Rashes
16. Itching
17. Increased perspiration, unusual smelling perspiration
18. “Metallic” taste in mouth
19. Transient nausea, “sick to stomach”
20. Abdominal cramping/pain
21. Increased bowel movements
22. Diarrhea, loose stools, urgency
23. Unusual color of stools, e.g. green
24. Temporarily increased urination
25. Transiently increased thirst
26. Clear urine
27. Unusual smelling urine
28. Transient increased muscle pain"

Best regards,

Rich

 

[klutzo]

Thank you, Rich!!!

Hi Rich,
Thank you SO much for this list. I've been flying to the moon recently on the dose of thyroid that was always just right before. I did not think it was ever possible to stop thyroid meds once started and I've been on the same dose of Armour for six years. I'd blamed my jitteriness on being forced to switch to Levothyroxine, due to the Fraud and Death Administration having virtually shut down production of Armour, thus causing a huge backorder problem with Westhroid and Naturethroid. I decided to leave the limited supply of the natural stuff to those poor souls who can't convert T4 to T3, which is not me. But, maybe it 's not the synthetic. Maybe it's the B12 helping my thyroid to work again. That's a good problem to have.

Thanks again,
klutzo

 

[Freddd]

Hi Rich,
Thank you SO much for this list. I've been flying to the moon recently on the dose of thyroid that was always just right before. I did not think it was ever possible to stop thyroid meds once started and I've been on the same dose of Armour for six years. I'd blamed my jitteriness on being forced to switch to Levothyroxine, due to the Fraud and Death Administration having virtually shut down production of Armour, thus causing a huge backorder problem with Westhroid and Naturethroid. I decided to leave the limited supply of the natural stuff to those poor souls who can't convert T4 to T3, which is not me. But, maybe it 's not the synthetic. Maybe it's the B12 helping my thyroid to work again. That's a good problem to have.

Thanks again,
klutzo

Hi Klutzo,

I've known a number of people who thought it had to be changes in thyroid, but when they actually got tested, nothing had changed. I suggest a great deal of caution in making any changes based on a thyroid assumption. So far I haven't known of anybody with any lasting changes to thyroid function. It would be great to see but be very careful.

 

[klutzo]

thyroid changes

Hi Fred,
Thanks for the caution. I do not plan on lowering my dose any further unless testing shows it needs to be lowered. I finally got the numbers right last time I had labs, for the first time in ages. I do need to go back to the dose I was on a couple of months ago though. The slightly higher dose was too much for sure and I felt so much calmer when I went back to my stash of Armour that I had saved, just because I had a hunch I might need it. Now I have to convince my new PCP, if our appt. works out tomorrow, to give me a script for the equivalent dose.

klutzo

 

[Sunday]

OMG! Another Firesign Theater fanatic.

I just want to say that I also find all the things that are going on to be (in the main) encouraging; definitely something is happening and definitely my energy level is better.

Thanks Rick for the healing results/symptom list, even though we're dealing with different protocols here I think it's interesting to see what can go on in the process, it can maybe help us prepare for them a little better.



"The old Same place? It's right out back. Here's the key."

 

[Sunday]

I'm still thinking about the vitamin B12/depression connection. My mother and grandmother were both depressed mystics (or mystical depressed people). Until now, I'd assumed it was a temperamental trait, but now I can't help wondering if at least some if it has to do with genetic deficiencies somewhat like the ones in your family, Freddd. Food for thought.

And thanks, Freddd, for responding about my healing symptoms, it really helps to have confirmation on that. That bit about not beating myself up about what happened when my brain was off, and not avoiding it, is one I will particularly keep in mind. (Well, assuming the brain fog doesn't come in...but one good thing about this disease is that I've learned to run on intuition a lot more, and it works so easily I think I'll just keep doing that. As I get my brain back, my intuition and my intellect are just going to have to work out a better relationship.)

 

[richvank]

To Sunday re: depression

Hi, Sunday.

FYI, the drug company PamLab in Lousiana markets a prescription "medical food" called Deplin, which is prescribed for depression. It contains 7.5 milligrams of 5-methyl tetrahydrofolate (same as Metafolin or FolaPro). This is a very big dosage compared to what we use to treat the methylation cycle block in CFS. I've heard from some physicians that Deplin has been helpful for some of their patients who suffer from depression.

Best regards,

Rich

 

[Chris]

Thanks, Rich and Freddd

Hi; just want to say a big "thank you" to both Rich and Freddd for their contributions--to the forum and to my health. I began a modified, Canadian version of Rich's simplified protocol around the beginning of the year, using a low dose general B vitamin supplement plus a bit of 5-Methyltetrahydrofolate, 50 mg of P-5-P, and 1,000 mcg of Hydroxycobalamin.

At first there were some negative reactions--feeling low, slow peristalsis, a bout of prostatitis; I wrote Rich about this, and he said he had not encountered this last before, but seemed to accept it as probably triggered by a detox reaction.

I worked my way through this stage, and slowly improved over the following months. Then I read Freddd's stuff, and switched from Hydoxy to Methylcobalamin, using the locally available AOR brand, which seems to work. I started at 1/4 of a 5 mg tablet, moving cautiously up to 1/2. I put it under my upper lip, as Freddd suggested--a great improvement. This too seemed to produce movement, slow and not radical, but improvement.

Then just a few days ago I finally got some Country Life 3,000 mcg Dibencozide (not available in Canada), and that addition made a real and quite rapid difference, especially to my energy level. Things are looking up!

I should state that during the last weeks I have also been using a BioMat, and have had several sessions with an MRS 2000, cousin to the Bemer. So these may have helped some too. I know the advantages of doing one thing at a time, but I am too old to play waiting games!

In any case, it is clear at least to me that my own version of first Rich's simplified protocol, and then more recently my borrowing of major elements of Freddd's advice, have together helped me move up a considerable way, and I want to thank them both for all the work and patience they have shown.
Thanks! and best wishes, Chris.

 

[leelaplay]

What wonderful news Chris. May the energy return continue!

 

[dmholmes]

Hi; just want to say a big "thank you" to both Rich and Freddd for their contributions--to the forum and to my health.

Ditto ditto ditto, they have helped me more than anybody. Wish they had time to work together on this.