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B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Red04

    Red04 Senior Member

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    There is tons of good information on this forum and it gives me some hope on getting my wife's CFS symptoms improved. It seems we have reached the limits of what the doctors can do. I Need a little help with the B12 protocol. I am going to try and be concise and give as much background as I can.

    My wife has been on Prozac or other antidepressants since she was a teenager. She has OCD and anxiety issues. She has always napped excessively and skipped a lot of school to go home and nap in high school. It was never a fatigue issue. She played volleyball in high school and ran 5k's in college.

    Two years ago (shes 25) she started having serious digestion problems. Had a colonoscopy/endoscopy and was diagnosed (if thats what you want to call it) with IBS. Soon after CFS/FM symptoms set in. She went to Dr. Patricia Salvado in Houston and was given glutathion injections (her ATP was low) based on Richard A. Van Konynenburg theory. This had no effect and her other doctors advised her to stop seeing her.

    Since, she has seen 2 internists, an endocrinologist, another GI doctor, had a sleep study, and I can't recall what else.

    None of the docs found anything except the GI tested for Celiac and ran a b12.

    April 2010: Her B12 was 280 and vit D was at 36. GI put her on oral b12 (had spasms when falling asleep).

    May 2010: Her b12 was @ ~300. The GI recommended injections. 6 shots in the first two weeks, then 2/month. Her symptoms seemed to subside some except still extremely tired and would sleep 12 hours/day.

    August 2010: Saw sleep doctor, had sleep study, no major abnormalities. Fatigue seemed to return.

    Sept 2010: Tested b12 again and it was at 280 (it went down).

    She has tingly hands some nights. Major digestion problems. Noisy stomach. Extreme fatigue. Sleeps excessively. Muscle pain/FM. Soar to the touch, sensitive skin (she turns red when drinking or stressed) Every other month has a soar throat/pneumonia/bronchitis. If we both catch the stomach flu, she will have it two weeks and I will get over it in 24 hours. She gets antibiotics 8-10x a year.

    Sept 15 2010: Began B12 protocol from WD via Freddd. Started the ramp up:

    "To minimize startup effects, start with adnosylb12. This turns on the mitochondria before the nervous system. There is some nervous system startup due to limited mb12 conversion and due to neuronal mitochondria startup, but only a fraction of what occurs with methylb12. There is no large amount of unbound mb12 which produces large rapid changes. Then add TMG, the gentlest of the methylators. Then add SAM-e, then methylfolate and finally methylb12. By the time the mb12 is added, only those effects due purely to the mb12 itself will occur without the mitochondrial startup and the methylation reaction. After that add the l-carntine to finish the mitochondrial startup.with adb12"

    She never had any reaction to anything except once. She took a one-a-day multi-vitamin and felt like she was itching all over when going to sleep. Tried the one-a-day the next day, no reaction.

    Sept 30: Decided to start over and began just taking one of everything, looking for any kind of reaction. She has been taking all the supplements and co-factors and has seen no improvement or really any reaction at all.

    Currently 1 of everything: Calcium, Magnesium, A, D,E,C. Potassium, TMG, SAMe, Jarrow Formulas 5mg Methyl B12,Country Life Dibencozide, Solgar Metafolin 800mcg, Jarrow B-Right b-complex, Omega 3 fishoil, Zinc, and L-carnitine fumarate.

    Does anyone have any suggestions on how to move forward? Stick with it? Add more of one supplement? Take some away? Start something completely different? Shes has had a lot of blood work done and I am in the process of getting in a spreadsheet. Let me know if you need more info.

    Thanks for your help.
     
  2. curry

    curry Senior Member

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    Hi Red04

    My sincere sympathies for your wife...

    I am not a doctor or have any other medical qualification, what I am going to suggest is purely based on my own experiences.

    So let's see, so far she has been diagnosed with:

    - IBS
    - low vitamin B12, low vitamin D
    - low ATP

    The low vitamin B12 and D level may be due to her IBS, as this can cause malabsorption.

    • I would treat the IBS first, because if her gut doesn't work as it should, the supplements won't get properly absorbed.
      What may help is VSL-3 Probiotics.
      She also should consult a doctor who is specialised in gut disorders.

    • Regarding the low ATP:
      To improve my mitochondrial performance I've been following Dr Myhill's protocol, a CFS doctor in the UK.
      I've been doing it for some weeks, and I can definitely say it helps! :Retro smile:

    Best wishes,
     
  3. curry

    curry Senior Member

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    Thank you Freddd and JamesK for the info regarding SAM-e. Much appreciated.

    Cheers.
     
  4. Red04

    Red04 Senior Member

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    Thanks for the advice. She was taking GI-Align probiotic, didn't seem to help. Her GI doctor is really thorough and experienced. He is about at the end of what he can do. We visited him on Thursday and he put her on:

    4 days of xifaxan, if not better 4 days on Alinia, then VSL#3. If that doesn't help her GI problems, then he may do a few other long shot diagnostics on her.
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    Is she celiac?

    Otherwise, my only suggestion would be to run the Methylation Pathways Panel from Vitamin Diagnostics in NJ. $300.
    Looks at glutathione, reduced and oxidised, and lots of folate markers.

    The lab does not have a website, but search the forums for more info on it.

    I think it's odd she did not react to 5 L methytetrahydrolfolate,,, folapro. Has she tried folinic acid?
    Any reaction to that?

    If she doesn't react to either of those.. I think she may be dealing with something slightly different than many of us.
    Just a suspicion.
     
  6. Freddd

    Freddd Senior Member

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    Hi Red,

    My main questions is this, is she putting the mb12/adb12 under her upper lip for at least 45 minutes for as long as possible, preferably 120 minutes or more? Also, is she taking the basics, ie B-Right twice a day, magnesium, calcium, a, d3(3000-5000 iu), e, C, omega3, zinc 50mg etc?

    If those are all yes, has she tried the SAM-e, L-carnitine fumarate, while increasing one at a time but taking all of them at the same time after a buildup? If none of this had any effect then increasing the dose by 5mg at a time to 25mg, and then finally trying 50mg of the mb12 in a single dose and then the next day adb12 51mg in a single dose? This is just the short version. If none of these things havre any noticable effect continue for a year and see what happens. Sometimes there are absorbtion problems but IBS does not affect the sublingual in any way and the IBS heals in a year or so. It is important to to do this properly. I'm not sure what is going on but please affirm to me that she is following it precisely in all specifics and then we can continue from there. List all her symptoms as found on the list of symptoms, signs and co-correlates and all of what she is taking and HOW, ie with or without food, before food etc. Is she taking glutathione or glutathione precursors even unknowingly concealed in various "neuroformulas" etc.?
     
  7. curry

    curry Senior Member

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    If this all doesn't work, then she may also have a look into the following:

    - Has she been tested for fructose, lactose and gluten intolerance?
    - Has she been tested on candida albicans?
    - How does her diet looks like? Sugar, processed food, white flour products like bread, pizza etc. - this all can lead to gut fermentation and end in IBS.

    (Btw, I had IBS due to a candida overgrowth... it took some years to get the correct diagnosis. :rolleyes:)
     
  8. doveman

    doveman

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    Red04,

    It might be worth her trying Ubiquinol CoQ10. I've been taking 100mg/day for about 2 weeks and I've definitely felt more energised, manic even, although my general body weakness/bone pain/unfitness still restricts me. I got Dr's Best Ubiquinol 100mg, 60 capsules for 17.83 from iHerb, but I see that you can get Healthy Origins CoQ10 100 mg 150 capsules for 18.32 here at the moment, although I've never used that company, so you might want to stick with iHerb or another well-known company.

    I also have gut problems (just had a capsule endoscopy the other day) and have been told it's IBS in the past. I have a definite gluten intolerance, if not celiac, so I have less gut problems and generally feel better if I avoid bread/pastry/pasta, etc, so I sympathise with your wife.
     
  9. Red04

    Red04 Senior Member

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    Thanks for getting back to me. I'm amazed at how much information has been assembled here.

    IBS isn't a real diagnosis in my opinion. It is like saying you have a hangover, it's just a group of symptoms.

    Another bit of information is that my wife can "handle" her drugs. She can take more than an average person and not feel the effects.

    Currently:

    She takes all the Vitamins and co factors (one of each) right before we eat evening meal. (once a day)

    Then ~1 hour later she disolves the B12 for ~45 minutes, sometimes 30 min, sometimes 1 hour. She puts the MB12 under her tounge and the ADB12 under her upper lip.

    Let me see if I have this correct. You are saying take:

    Morning: B-Right

    Evening: B-Right + everything else

    Also, when you say "take SAMe and L-Carnitine fumerate, increasing one at a time", does that mean increase the SAMe first, then L-C f? or does that mean add one of each every day?

    She is currently getting off her "neuro" drugs. She has recently quit prozac and ambien, and she is tapering off of clonopin now. Her other meds are lyrica, celebrex, and birth control. This is the least amount of meds she has been on in quite some time.

    Symptoms: Red means major symptom, yellow occasional or mild.

    SYMPTOMS, SIGNS AND CO-CORRELATES OF METHYLB12, ADENOSYLB12,
    METHYFOLATE AND SELECTED COFACTOR DEFICIENCIES
    LAST UPDATE -
    Version 1.01, 12/01/09


    canker sores
    burning muscle pain
    accumulating muscle pains following exertion
    sore muscles
    exercise deblitates for up to a week, making things much worse
    painfully tight muscles, especially legs and/or arms
    flatulence
    altered bowel habits
    abdominal pain

    intermittent constipation
    intermittant diarrhea
    irritable bowel syndrome

    reduced libido - loss of sexual desire
    Widespread pain throughout body


    dizziness - even unable to walk
    vertigo


    irritable
    depression

    mental slowing
    poor concentration
    tiredness
    memory loss
    mentally fuzzy, foggy, brainfog
    anxiety or tension
    nervousness
    Hypersensitivity to temperature changes
    mild to extremely severe fatigue
    continuous extremely severe fatigue
    easy fatiguability
    non restorative sleep
    roughening and increased raspiness of voice, mb12 can smooth it outin mid word
    paresthesias in both feet - burning, tingling,cobwebs, wet, hairs, pain, numbness, etc
    poor resistance to infections

    STARTING AS INFANT OR CHILD
    frequent or continuous toncilitis
    frequent strep
    frequent pneumonia

    frequent longlasting supposed viral illnesses that linger and linger and linger
    everything goes to the lungs for extended periods
    hives/sensitive skin. She gets red blotches around her neck/chest with stress/anxiety/alcohol

    Thanks for all your hard work and help. Does anyone know any doctors in Houston that would be worth seeing for CFS?
     
  10. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Red,


    Ok, I'll lay it out.

    30 minutes or more before morning meal on empty stomach -

    L-carnitine fumarate
    SAM-e
    TMG
    Methylfolate (seems to work better on empty stomach though with food isn't bad)
    Thyroid meds (if taken at all)

    With Breakfast
    water soluable vitamins and minerals don't last 24 hours from single dose

    B-right,
    half of day's calcium, magnesium, zinc, potassium, A, D3, E, C etc

    With Dinner

    B-right,
    half of day's calcium, magnesium, zinc, A, D3, E, C etc
    additional Methylfolate (3 hr serum halflife)
    potasium


    The list of symptoms includes body-mb12, brain-mb12, body-adb12 deficiency symptoms mainly. However, there may or may not be brain-adb12 responsive symptoms. Most of the symptoms listed are of the slow healing type, say about a year. The muscle and fatigue symptoms could respond specifically to the adb12, l-carnitine fumarate, alpha lipoic acid, D-ribose.

    Is she now or has she taken glutathione or precursors? Does she take some of those "neuro" formulas that includes such things or MAXGL or anything like that?

    Try to get the retained time of b12s into the 1-2 hour category, it could double absorbtion. My suggestion on vitamin C is at least 4 grams (4000mg) daily with bioflavinoids daily divided into at least 2 doses. Does she have the burning muscle pain? That is something that can respond in weeks.

    Be very carefull with the clonopin. Decrease no faster than 1% per day or 5% per week. Becasue of the long halflife you can easily use a variable time method, ie divide into 2 half doses per day to start and then increase the time between doses by 1% per day until the interval is 24 hours. Then divide the dose in half, go back to 2 doses per day and again increase the interval by 1% per day. So 12 hours is 720 minutes and that translates to increasing the interval by 7-8 minutes each day slowly increasing as the duration gets longer, 15 minutes at 24 hours. It could take 2 years to get it low enough to then do a final taper on it which, when the dose gets down to about .01mg/day is to just keep increasing the interval between doses out to 3 weeks before discontinuing completely. This way she will have no protracted withdrawal effects.

    After all the basics are well in place and the daily dose of mb12 is 5-10mg (sublingual pill size) or more and adb12 is 3mg pill size daily, then add the l-carnitine fumarate. Take it for 2 weeks or until the startup effects end, then add the SAM-e, do the same, and then add the TMG and do the same. Then continue titrating the mb12 to 25mg/day. After that then try a 50mg single dose of mb12 making multiple tabletas last as long as possible over a 4 hour period or so. On another day try 51mg of adb12 in the same way. These will let you know if it is a CNS/CSF deficiency you are dealing with.
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Not sure how long she has been sick or you have been seeing this Dr. But perhaps it is time to change Drs?

    You might want to check out this website: http://www.co-cure.org/good-doc.htm

    Not sure what country you are in, you can see what country I am in. I can suggest another website for a different Dr if you are in the US. PM me if you like.

    Have you consider low dose Naltrexone? I used to have lots of intestinal issues, but that has settled down a lot.

    GG
     
  12. curry

    curry Senior Member

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  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I saw you haven't posted much, it amazes me how many people do not know about this site! Hope it helps you! I know with the fog and we are told there is nothing to treat us, but there is help out there!!
     
  14. Red04

    Red04 Senior Member

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    Freddd, Thanks for spelling all that out for me. Thanks for all the other suggestions from others too.

    I think we may be on to something here. My wife got a massage on Friday and she had muscle cramping to the extent that she couldn't get out of the car when she got home. She said she thought she was having a stroke. She has been battling muscle cramping all weekend. I upped her potassium to see if that stops it.

    Does anyone think the massage had a lot to do with her increased cramping or could this be a sign that the B12 protocol is taking effect? Also her overall symptoms seemed to have gotten worse overall. I hope this is temporary and we are on the right track.

    Thanks again.
     
  15. winston

    winston

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    Central California
    Sunday, check your PM messages.

    Lena
     
  16. Freddd

    Freddd Senior Member

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    Hi Red,

    or could this be a sign that the B12 protocol is taking effect?

    Yes, this happens fairly often and is a sign of sudden healing startup. I have had it happen within 3-4 days of starting mb12, adb12, l-carnitine fumarate and methylfolate. I also had it happen this year when the last of the glutathione effects wore off and my body started healing again and I was adjusting to a higher altitude. It can be fatal if not treated. That is why the potassium is stated as an essential minimum supplement.


    Also her overall symptoms seemed to have gotten worse overall. I hope this is temporary and we are on the right track.

    Yes it is, these dozens of changes are collectively called "startup responses" as they are tied to the active b12s starting to affect the hundreds of things that had gomne wrong. The things affected first and most are typicaly those things that heal the most in the near term. When the body reaches a saturated equilibrium the startup responses fade quickly. They start changing almost daily and some start to fade quickly and most are gone in 1-3 months. They can start again though usually reduced when additional critical cofactors are added.
     
  17. Red04

    Red04 Senior Member

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    Thanks for the encouragement Freddd.

    My wife's depression seems to have been thrown into OVERDRIVE, this is the worst I've seen her, along with her muscle pain and sensitivity to touch. What can I give her as a reasonable time frame for improvement? Taking tons of supplements throughout the day + disolving b12 sublingual for an hour + depression + worse symptoms has taken its mental toll on her and she isn't real enthusiastic about continuing.

    Also,

    has anyone seen this: http://www.spectracell.com/mnt/

    Wife's OBGYN said to look into it. We can't find a doctor who can offer much guidance about the testing. Any comments or thoughts?
     
  18. curry

    curry Senior Member

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    Well, it is a test for 'Nutritional Status'. As your wife has been already diagnosed with IBS, she has for sure nutritional deficiencies. If you'd like to have this once more confirmed, fair enough.

    I would use my energy what to do on the diagnoses she already has, which are:

    • IBS
    • Mitochondrial failure

    After you have treated these problems and she has not had any improvement, then you can consider what to do as next step.

    Best wishes,
     
  19. Freddd

    Freddd Senior Member

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    Hi Red,

    Is she taking adb12 and l-carnitine fumarate? For some people it is necessary to get the brain neurons mitochondria going well. It is a balance between those and the mb12 that is needed. However, with the magnitude of reactions there is no doubt at all that she has b12 deficiencies and this will get to them. I don't know any way around them. Things can be difficult when they start changing every day, and healing is changing. Make sure she has potrassium as she is likely to possibly need it with this degree of startup response. Muscle pain comes in about 4 varieties and some of it respons to mb12 and some to the adb12/carnitine pair. Also Metafolin lack can greatly increase muscle pain.

    Some things can change in hours to days. Other things change over a week or 3. Other things over the months or longer. She sounds like she has enough specific things, that it would help if she tracked them all in writing because otherwise the 20 that get better are completely obscured by the 2 that don't.

    Depression is a very common b12 deficiency symptom. Also, most all the symptoms intensify for a while when starting the mb12 mostly as it affects the most things. I can't tell you how soon. My burning muscle pain started improving in days and was gone ion 10 days. My burning tongue and burning bladder were also much im[proved in 10 days. I had more energy in 60 minutes. Moods were volitile on and off for 9 months on several occasions. However, startup responses per se start fading in days for many and are generally gone or mostly so in 3 months or less. It depends partly on how fast the body gets saturated with mb12 mostly. The startup appears to fade more quickly with higher doses but is slightly more intense.

    IBS takes some months to heal. Mitochondria function can start improving within hours especially with adb12 and l-carnitine fumarate.
     
  20. Red04

    Red04 Senior Member

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    She is taking adb12 and l-carnitine fumarate.

    I would say she had almost zero reaction for two weeks on:

    Mb12, adb12, A, C, D, potassium, TMG, SAMe, Methylfolate, Calcium, B-Right. One night she took a "one-a-day" multivitamin and had spasms when going to sleep, similar to what oral cyanoB12 caused.

    Then we added the l-carnitine fumarate, E, and zinc. Then, came cramping, intensified muscle pain and sensitivity to touch. Also, intense depression. I have never seen her this depressed. We upped the potassium and the cramps subsided immediately.

    If I keep pushing this forward, is that the quickest way to get over the hump? I felt like this would be the best approach as she is not exactly enthusiastic about this approach. I don't know if I could talk her into months of trial and error. I need a little momentum to get her on board.

    Thanks for your help and continued support. This is a really tough time for us.
     

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