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Wrong Diagnosis Site - Fredd's Protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Idie, Nov 1, 2011.

  1. livefreeordie98

    livefreeordie98

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    A lot of hope

    Thank you for taking the time to post your story. It helped me a lot. The gastritis is the issue that had me the most confused.
    I read another person's post that said she had two symptoms that came charging back when she missed her b12 for 3 days; severe gastritis and shortness of breath. Well, that is what happens to me. So, I knew I needed to be taking b12 injections more frequently.
    Also, at the end of your post when you said you needed to take a PPI such as prevacid when you took an antibiotic, well, whenever I take an antibiotic my stomach is so bad..and I was taught to believe that PPIs are the devil and if used for a long period of time, they are, but I see that I am like you in this respect. I had just finished taking a round of penicillin and my stomach was so bad, so I broke down and took a prevacid and I felt better in an hour. I would get so acidic that my eyes were red and blurry. And I would be sick...and tired and miss work.
    I wanted to ask you what dosage of methyl you took when you switched from the cyno to the metyl and when did you add
    ando b12. And lastly, what dosage do you take now to maintain your levels.
    I appreciate all of your help. I understand that we will always have our aches and pains, but I want to recover and only by taking b12 correctly will this take place.
    I am going to be 60 years old next year and I feel as if I have lost the last 20 years of my life to constant suffering while trying to solve my own health issues because doctors know so little about b12. I too, was given antidepressants and I threw them out. I am not depressed, I am sick!
    thank you in advance for enlightenment you are able to toss my way.
     
    merylg likes this.
  2. rydra_wong

    rydra_wong Guest

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    Mery, Here is what I am taking. It took me a very, very long time to compile this so I am done in for today. But here it is:


    Multi (Basic Nutrients IV with iron, copper, iodine) (6 pills)
    Brand: Thorne Research Dose: Vcaps
    Reason: Contains 1st dose active B's, Trace Minerals (iron, zinc, copper, iodine*, chromium, vanadium), A
    Notes: *(l am intolerant to iodine but taking with Gingkogold), low protein consumption need iron, I am low in copper, chromium, vanadium

    Copper Picolinate (1 pill)
    Brand: Thorne Research Dose: 2mg Vcaps
    Reason: Hyperthyroid, Hypochlorhydria, Skin and Blood Vessel Health, Bone Health
    Notes: Multi Vitamin Use is Linked to Osteoporosis (I believe due to low copper)

    Pregnenolone (1 pill)
    Brand: Country Life Dose: 30mg Vcaps
    Reason: Brain function, Progesterone (ward off hormonal cancer)
    Notes: Higher dose causes water retention

    DHEA (3 pills)
    Brand: Trimedica Dose: 25mg Caps (75mg/day)
    Reason: Constant low blood sugar/panic attacks, Blood Pressure, Focus/Energy
    Notes: Must Be Divided dose (to keep in system 24 hours); lower dose does not work for me

    Cruciferous Vegetable Extract (1 pill)
    Brand: Life Extension Dose: Caps
    Reason: Ward off hormonal cancer
    Notes: Contains DIM & I3C, sulfur source

    Vitamin D3 (1-2 pills)
    Brand: Superior Source Dose: 5000mg Sub-lingual (7000mg/day)
    Reason: VDR genetic defect, Bones, Muscles, Sleep, Ward off Hormonal Cancers, Seasonal Affective Disorder, Regulates methylation enzymes
    Notes: I take TWO 3 days/week to total 50,000mg/week. This gives optimal lab readings and urinary ph. Less and I dont absorb enough calcium. More and I absorb too much and can get a UTI (life threatening if you have high blood pressure)

    Cal-Mag Citrate, 1:1 Ratio (6 pills, more as needed)
    Brand: Soloray Dose: 1000mg Caps
    Reason: Blood pressure, Bones, Muscles, Sleep
    Notes: Vitamin D Receptor genetic defect; Cal-Mag causes a 30 point drop in b.p. (but b.p. rises soon after w/o DHEA)

    Vitamin K-2 (1 pill)
    Brand: Now Foods Dose: 100mcg Vcaps
    Reason: Ward off hormonal cancer, Bone/Vascular Health*
    Notes: *Needed for calcium to enter bone rather than clog arteries

    Basic B Complex (1 pill)
    Brand: Thorne Research Dose: Vcaps
    Reason: Methylation (bypasses all broken genes)
    Note: All active Bs

    Folate Metafolin (methylfolate) (1 pill)
    Brand: Solgar Dose: 800mcg Tabs
    Reason: Methylation, Methylation in Brain
    Notes: 5 were no more effective than 1 for me

    Methyl B-12 (1 sublingual)
    Brand: Jarrow Dose: 5000mcg Sublingual
    Reason: Methylation, Methylation in Brain
    Notes: 2 were no more effective than 1 for me

    P-5-P (Coenzymated B-6) (1 pill)
    Brand: Source Naturals Dose: 100mg Tabs
    Reason: Kidney Protect, Lower Homocysteine
    Notes: 50mg worked as well, but this is kidney protective so since I can tolerate it, more is better. Shortness of breath when I ran out of this (but could have been iron shortage as welllow ferritin but Hemoglobin level fine).

    TMG (2 pills)
    Brand: Now Foods Dose 1000mg Tabs (2x/day)
    Reason: Methylation. Those who get the most TMG through diet get 2g/day.
    Notes: Can cause nausea (only if taken with adrenal supplement for me)

    Omega-3 (3-6 pills)
    Brand: Kroger Dose: 3g/day except during allergy season: 9g/day
    Reason: Nerve Health (myelin sheath), Prevent allergy cytokine eproduction, Brain Happiness
    Notes: 9g/day makes my brain effervesce like Vicks Vaporub was applied!

    Ester-C (2 pills)
    Brand: American Health Dose: 1000mg Caps (2000mg/day)
    Reason: Water-soluble Anti-oxidant, strength / immunity / longevity, Homocysteine protection*
    Notes: *this dose protects against homocysteine

    Vitamin E (d-alpha-tocopherol) (1 pill)
    Brand: Country Life Dose: 1000IU Softgels
    Reason: Oil-soluble Anti-oxidant, Protection from allergy induced free radicals, Heart Health, strength / immunity / longevity, Homocysteine protection*
    Notes: (I have taken this form & dose for 35 years for protection from cytokines due to allergies) *800mg protects against homocysteine

    Vitamin E (gamma-tocopherol + 200mcg selenium) (0-1 pill)
    Brand: Soloray Dose: 300mg Softgels
    Reason: Anti-cancer

    Selenium (1 pill)
    Brand: Now Foods Dose: 200mcg Caps
    Reason: Anti-oxidant , Protects Thyroid, Ward off hormonal cancers, strength / Iimmunity / longevity

    Alpha Lipoic Acid (1 pill)
    Brand: Now Foods Dose: 100mg Vcaps
    Reason: Oil & Water-soluble anti-oxidant, also contains sulfur (methylation), anti-cancer, strength / Iimmunity / longevity
    Notes: Cannot tolerate more, it greatly reduces blood sugar

    Ubiquinol (1 pill)
    Brand: Doctors Best Dose: 50mg Softgels
    Reason: Anti-oxidant, Heart Health, Periodontal Health, Energy
    Notes: Cannot break down ubiquinone

    Olive Leaf (1 pill)
    Brand: Soloray Dose: 1g. Tabs
    Reason: Kills pathogens*, makes my veins feel more peaceful (vasodilation?), polyphenol anti-oxidants
    Notes: *Needed due to hypochlorhydria; does not affect blood pressure significantly

    Ginkgo (1 pill)
    Brand: Natures Way Ginkgold Dose: 120mg Tabs
    Reason: Brain inflammation (right side due to iodine use)
    Notes: Significantly increases neural circulation (proven and I can feel it).

    Potassium Gluconate (1 ts.)
    Brand: Now Foods Dose: 500 mg (1 ts)
    Reason: Blood Pressure
    Notes: Lowers b.p. last 5 points. I stir into Vitamin Water.

    Aged Garlic Extract (1 pill)
    Brand: Wakunaga Kyolic, Formula 109 (w/batto) Dose: 400mg Caps
    Reason: Blood Pressure, Fibrin, methylation (cysteine), immunity, anti-cancer
    Notes: Little effect on blood pressure.

    Milk Thistle (1-2 pills (1/3 dose))
    Brand: Eclectic Institute Dose: 600mg Caps (if you take 6)
    Reason: Liver Protection*, inhibits cytokines (erases joint pain) caused by lack of sleep
    Notes: useful while experimenting with supplements, also DHEA can enlarge liver

    The rest are merely in my arsenal and I take when needed or desired:

    Phosphatidyl Serine (1 pill)
    Brand: Source Naturals Dose: 100mg (also contains phosphatidyl choline
    Reason: Methyl cycle
    Notes: Prescribed by my doctor (I am not always compliant)

    Dibencozide (1 pill)
    Brand: Country Life Dose: 3g. Sublingual
    Reason: Kreb Cycle. My uMMA was ok, so dont think I need this.
    Notes: Contains folic acidwould need to find a new brand.

    Slippery Elm (1-2 pills)
    Brand: Now Foods Dose: 800mg Caps
    Reason: Protects stomach from so many pills, stomach pain / nausea
    Notes: Sometimes I take to ward off problems sometimes just dont need it

    Mastic Gum (1 pill)
    Brand: Jarrow Formulas Dose: 500mg Caps
    Reason: Stomach pain (strong)
    Notes: I only take this if Slippery Elm cant do the job

    Rhodiola (1 pill)
    Brand: Eclectic Institute Dose: 500mg Caps
    Reason: Increase glycogen stores (maintain blood sugar across stressor), Peaceful under stress. Adrenal assist.
    Notes: Very noticeable mothers little helper pill for me. Neither Ashwaghanda nor Schizandra did anything for me.

    Benfotiamine (1 pill)
    Brand: Doctors Best Dose: 150mg Caps
    Reason: Protects Kidneys, Blueberries & tea destroy B1 but not this.

    Burdock (1 pill)
    Brand: Eclectic Institute Dose: 500mg Caps
    Reason: Sulfur (methylation), anti-cancer, mucilaginous (sooth stomach), de-tox
    Notes: Love this but often run out

    Ipriflavone (1-2 pills)
    Brand: Now Foods Dose: 300mg Caps
    Reason: Bone Mass (proven effective)
    Notes: Took daily before hormone replacement then trailed off

    Adrenal Glandular (1-2 pills, not at once)
    Brand: Nutricology Dose: 300mg Vcaps
    Reason: Undeserved Low Blood Sugar Attacks, Adrenals
    Notes: Needed only if exposed to a DHEA-blocker or during allergy season. (I take it if I start to get low blood sugar only)

    D'Pantothenic Acid (1 pill)
    Brand: Natural Factors Dose: 250mg Caps
    Reason: Adrenals
    Notes: Allergy Season

    D-Mannose (as specified on label)
    Brand: Now Foods Dose: 500mg Caps
    Reason: UTI
    Notes: If needed. (A UTI could kill me with my bllod pressure)

    CranRX (as specified on label)
    Brand: Natures Way Dose: 500mg Vcaps
    Reason: UTI
    Notes: if needed (B.P.)

    Melatonin (1 pill)
    Brand: Natrol Dose: 3mg
    Reason: Sleep, relax
    Notes: As needed for stress (rare). Didnt like timed-release.

    Astragalus (1 pill)
    Brand: Now Dose: 500mg
    Reason: Infections
    Notes: Increases T-cells, I am not sure what is a good dose

    Oreganol (Oil of Oregano) (1 pill)
    Brand: North American Herb & Spice Co., Dose: 140mg Softgels, Triple Strength
    Reason: Infections
    Notes: Kills everything, even gram negative bacteria

    Zinc (1 pill)
    Brand: Soloray Dose: 75mg Cap
    Reason: colds (barrier method), acne

    I am also taking a low dose injectable pellet estrogen. This is only recent and the dose is too low to have any effect that I can perceive so far. I was supposed to dial down my DHEA but could not (due to allergy season!
    And now flea control products!)

    I use CP Serum (liquid copper) from skinbiology.com a few drops a day (the tiny bottle lasts forever) and it made a patch of crepey skin (copper deficient) on my neck turn back to normal skin (within very little time - maybe a week).

    I eat an egg every day (methionine). I love sulfur-containing supplements).
    I eat a low protein diet (40-80g / day).
    Fish is my primary protein source.
    There is little junk food I will eat it has to have something in it that my body thinks is redeeming (no doughnuts, chips, pop, etc, but yes to chocolate and ginger and raw nuts, etc).
    I eat naked food (the salt and chemicals are in the sauce).
    I choose foods as free of chemicals as possible
    I try to avoid chemicals in life (nothing scented, no dryer sheets, no cleaning chemicals, no medicines, etc).

    You might be interested to know there are these other choices for allergy that work for me:

    Spirulina (20 pills)
    Brand: Whole Foods Dose: 500mg/Tab)
    Reason: allergies will clear sinusses
    Notes: It seemed a lot og pills to me.

    Nettle (5-6 pills)
    Brand: New Chapter Histamine Take Care Dose: 100mg Cherry Lozenges
    Reason: Allergies will clear sinuses
    Notes: Nettle can cause low blood sugar and I had a lot of problems with this when I took it, but then I did next allergy season when I did not.

    ----
    (You know I spent a lot of time formating that in Word and no matter what it turns out looking like an unruly pile of text).

    Rydra
     
    merylg likes this.
  3. mogy

    mogy

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    Hi Rydra and Meryl,
    I did have some start up symptoms with Freddd's protocol. I was taking very few vitamins before I started, and just jumped in, taking everything on the basic protocol. I had some dizzyness and balance issues, plus a tightening of my calves.
    I started with the 1mg Jarrows X 12 per day, spaced out as evenly as I could. The first time I took a 5mg Jarrows(about a week after I started), I had a headache for a day.
    I also had a shorter headache, the next time I took a 5mg, about 3 weeks in when I was up to 20mg taking 1mg tabs, 2 at a time, spaced out.
    I believe I minimized my startup symptoms by taking many small doses, instead of fewer larger doses.

    I hope this helps,
     
    merylg likes this.
  4. mogy

    mogy

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    Hi Rydra,
    How do you keep track of all those vitamins? I though I was taking a lot.

    mogy
     
    merylg likes this.
  5. rydra_wong

    rydra_wong Guest

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    I keep them on shelves and just dish out down the row into 3 piles (I take my hormones, D, C, E on an empty stomach right away since I can't miss them and they won't upset my stomach, the pills that have to wait until breakfast go into a ziplock bag (the bulk of them), the pills I take at lunch/dinner go in my pocket and consist mostly of just my second DHEA, B complex, and Cal-Mags. I usually eat breakfast on the run - hence the ziplock bag.

    I thought every health conscious or sickly person did this until I saw the people here listing what they actually took which would not support a whole biochemical pathway. It seems like researchers are always looking for the 'magic bullet' -- one nutrient that will fix a certain problem -- but why anyone would think 1 nutrient would fix a pathway requiring about 30 nutrients is beyond me. I need only go to a supermarket and comb the aisles looking for a healthy bread and not find any to know that people are deficient in all kinds of nutrients out there, not just one. (But of course I feel the symptoms faster probably due to my genetics...I guess I'm the canary in the mines).

    You know Fredd's protocol does list all the basics like A, C, E, zinc, omega-3 etc. to make sure all the bases are covered. I do not know how many pills he does it in but it must be a few!

    I can actually feel the effects of most of the vitamins I take so I change what I take based on circumstance. I know what it feels like to need more C or potassium or cal/mag, forp instance, I know Ginkgo will take down some level of brain swelling (which chokes out circulation) -- I can feel gingko increase circulation. (High blood pressure and hyperthyrod both cause brain inflammation, for instance). I can feel milk thistle help me and rhodiola and - DHEA. DHEA if I.m out and then take it is what gives ME 'startup' symptoms, but they only last a minute. Like going into a fun house with the mirrors that expand and contract and make you dizzy. And then -whoosh - you pop out the other side and feel like yu've been sorted out. (No more neural or blood pressure problems anyway).

    I think DHEA up/down regulates some/all of my broken genes so they are more normal and that is why I don't feel the startup effects on Freddd's protocol. But my labs sure know the difference -- this got my homocystene down to normal to avert strokes and heart disease, and helped me produce enough carnitine all on my own for energy. It also keeps flea bites from itching when I used to be terribly allergic to insect bites.
     
    merylg likes this.
  6. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    Hi Rydra,

    I really appreciate the effort you have put in to itemise your list for me & others to see.:thumbsup:

    mogy,

    Thanks for your tips re methylation start-up :victory:

    :sofa: meryl
     
  7. justy

    justy Senior Member

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    Hi, i have just started injecting daily with Methyl B12 (im not sure of the dose, was prescribed by Dr Myhill) My B12 serum level was 246.
    What effect if any will the shots have on methylation?
    what do i do if i want to do the full protocol?
    Thanks, Justy.
    P.S -im not scientific at all so no complex explanations please!
     
  8. justy

    justy Senior Member

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    The dose is 500mcg per day (5mg per ml and i take 0.1ml daily)
     
  9. Jenny

    Jenny Senior Member

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    Hi ryda

    Thanks very much for taking the time to list all your supplements. You say you can feel the effect of these - I'm curious to know more. I've taken hundreds of different supplements over my 30 years with ME and I still cannot do more than hazard a guess as to what anything is doing or not doing.

    The problem is that even if I take nothing for weeks and keep activity stable my symptoms fluctuate hugely - from minute to minute, hour to hour, day to day, week to week and year to year. It feels like my whole system is in constant flux. Also, it's clear that some supplements have an effect that builds over time. So it's impossible for me to judge the effect of anything, even if I carefully add things one at a time.

    And all this is complicated of course, as you say, by the fact that supplements work synergistically.

    Can you say a bit more about how you judge whether something is doing anything? (Also, can I ask, do you have ME or another condition?)

    Jenny
     
  10. Idie

    Idie

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    Hello all,

    Sorry for my absence, I have been busy and have been working on my injections so I will try to answer a couple of questions I've been asked in previous posts.

    Start Up

    For me it was pretty intense. I jumped in fully committed because I was very ill. I started with Jarrow's 5,000 - 3 per day. One Metafolin 800mcg. It was very difficult for the first 2-3 weeks. I felt terrible every time I put a sublingual under my tongue. Terrible defined as: all my symptoms intensified, weakness, dizzy, tingling everywhere. After about three weeks, I could put the sublingual under my tongue and not dread it. My family would describe it as a naked-eye event when I began to turn around although for me it took quite a while before I knew I was improving, again because I was so ill For the next month or two and as I got more Methyl into my system, I had strong internal tremors that would wake me at night. Those subsided as things improved. It was scary for sure but the fact that I was improving kept me going. For a full six months, I would have reversals----I would relapse, then improve. This finally improved too.

    Injections:

    I did the protocol with sublinguals for two years and still had severe gastritis. I finally found a physician and a compounding pharmacy who would help me and I started on injections about 18 months ago. Everyday I gave myself an injection. Sure enough I had a tough startup but only for about 10 days BUT amazingly my gastritis improved literally over night. I also had a rough patch on my face that I developed about 10 years ago. I saw physicians about it no one could heal it. Within 10 days of injection, it disappeared and has never come back. For some reason, I needed the injections to get me over the hump with the gastritis and skin issues.

    New experiment with my injections:

    I read information from a doctor treating autism who said that they found in their experience with 50,000 injections of Methylcobalamin that if they used a solution of 12 mg per ml that their patients didn't do as well but when they went to a stronger solution 25mg per ml, they did better. Guess what, I started on 20 mg per ml and about three months later the pharmacist changed my dose to 12 mg per ml and sure enough over time I noticed that the injections didn't seem to be working as good. The improvements that I mentioned above came from the stronger solution that I started on. Just about ten days ago I started on 25 mg per ml. A little start up again, so now I'm waiting to see what happens. I'm hoping to only have to dose every 3 days or so rather than every day (learned this from the same doctor). So, we'll see.

    I do take other co factors but not a huge amount. The real showstoppers (defined as wow) were L-Carnitine fumerate and Zinc. When I added those two the effect was so strong it scared me---got very weak, shaky and really out of it. It lasted for about two hours after I took them and was scared to take it again. Fredd told me that was common when you found something that you really needed (hence the name showstoppers). He assured me that it likely wouldn't happen again that intensely. I got up the courage and tried it again. He was right and those two supplements make a big difference in my improvements. I have taken them every since.

    Again, just my experience and I was very ill when I started. Several people have chosen to titrate up slowly and looking back, I do understand why because my start up was intense. That said, you do have to get enough MB 12 to see marked improvement. I guess I'm glad I toughed it out and got the worst of it over quickly but there were several times when I considered going to the ER because the intensity was scary. When Rich says some patients did get very ill, perhaps they experienced what happened with me. I think those from the Wrong Diagnosis site that titrated up steadily didn't have as intense of start up AND some started with Adeno B12 first (for a week) before they added the MB 12 and that helped with start up too. I now recommend that people titrate.
     
  11. cyndyd

    cyndyd

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    This link is for any newcomers to the thread. It is information on symptoms, and an explanation to why some have this condition. There is a protocol here that has been changed a bit. I will post the replacements for the changed supplements next. Do not reply at this link. Come back here with questions.

    Message body





    http://forums.wrongdiagnosis.com/showthread.php?t=62327

    Check out all the basics and the list of symptoms. You will be amazed at how much b12 covers.
     
    merylg likes this.
  12. cyndyd

    cyndyd

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    Message body





    Douglas Laboratories B-complex with Metafolin
    Pure Encapsulations B-complex plus with Metafolin
    BioCare B-Plex (no folic acid or B12)

    The dibencozide should be by Source Naturals.



    THE TOP THREE ARE REPLACEMENT SUGGESTIONS FOR THE (Jarrows) B-RIGHT. PICK ONE FROM THE THREE.
    THE SUGGESTION FOR THE DIBENCOZIDE HAS NO FOLIC ACID IN IT. THIS IS THE REASON FOR THE SWITCH FOR BOTH. FREDDD SUGGESTED WE GET AWAY FROM FOLIC ACID AND STAY WITH THE ACTIVE FORM METHYLFOLATE INSTEAD.
     
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  13. cyndyd

    cyndyd

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    LIVEFREE: IDIE, AND I BOTH SUFFERED A LONG TIME WITH THE GASTRITIS. WE KNOW HOW BAD IT IS. I WAS ON EVERY PPI OUT THERE BEFORE DIAGNOSIS. NONE DID ANYTHING. THE PROTOCOL IS THE ONLY THING THAT HELPED ME OUT OF ALL THE DRUGS I WAS GIVEN. I DO BREAK DOWN WITH THE PPI'S ONLY WHEN NEEDED NOW.

    I FOLLOWED FREDDD'S PROTOCOL. I NEVER TOOK MORE THAN 2 (5000MTHL b12) A DAY. I KNOW THERE ARE MANY WHO TOOK, OR TAKE MUCH MORE. IT IS HARD FOR ME TO SAY WHAT IS NEEDED, AS I STARTED ON THE CYANO SHOTS, AND WAS SOMEWHAT BETTER BEFORE I SWITCHED TO THE MB12 SUB'S. I TRIED THE SHOWSTOPPER'S BUT DIDNT REALLY SEE ANY IMPROVEMENT. THATS JUST ME THOUGH.

    I JUMPED IN FULL PROTOCOL. I WAS STILL PRETTY SICK. MY SYMPTOMS WENT AWAY ONE AT A TIME. SOME GOT WAY WORSE BEFORE GETTING BETTER. THE PAIN I NOTICED THE MOST. THE PAIN POPPED UP IN PLACES ONE AT A TIME, AND WENT AWAY PRETTY MUCH THE SAME WAY. IT IS AMAZING HOW ALL OF A SUDDEN A SYMPTOM GOES AWAY. OTHER SYMPTOMS TAKE PRIORITY, AND YOU FORGET ABOUT THE ONES THAT ARE GONE. I HAD SO MANY, SOMETIMES ITS HARD TO REMEMBER THEM ALL.

    PAIN, AND GASTRITIS IS HARD TO LIVE WITH ON A DAILY BASIS. DO KNOW THAT THERE ARE PEOPLE HERE WHO WILL STAY ON BOARD TO HELP YOU IN ANY WAY WE CAN. WE CARE, OR WE WOULD NOT BE HERE. WE DO NOT WANT TO SEE ANYONE ELSE SUFFER NEEDLESSLY. IF YOU CAN ADD THE SUGGESTED SUPPLEMENTS, DO SO. I KNOW IT IS HARD TO THINK ABOUT PUTTING ALL THIS INTO YOUR STOMACH. IF IT IS HARD, DO IT SLOWLY. THATS UP TO YOU. IT DOES TAKE TIME, SO THE SOONER YOU GET GOING ON THE PROTOCOL THE BETTER. JUST KEEP US POSTED. KEEP A LOG. SOMETIMES IT HELPS TO WRITE HOW YOU FEEL. TRY TO GET YOUR DOCTOR ON BOARD. MOST NEED EDUCATING HERE. KEEP YOUR CHIN UP.

    ALSO I LIKE TO PUT A NAME TO A POST, SO PLEASE SIGN YOUR POSTS. :) THANKS

    CYNDYD
     
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  14. cyndyd

    cyndyd

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    THIS IS A POST FROM THE PREVIOUS WEBSITE WRITTEN BY SOYCOFFEE. IT IS A WAY TO START SUPPLEMENTS SLOWLY IF THAT IS WHAT YOU CHOOSE TO DO.




    This is a reprint of my general slow, specific titration method, for those who are anxious about startup symptoms. The one that Arya posted was designed specifically for someone who had started and stopped several times, was taking uncertain amounts of antidepressant and antianxiety medication, and needed to take the startup especially slowly.

    @Kaz, specifically, others in general. Yes, if you like, take the first two days on this schedule, then speed up. Make haste slowly, though, to avoid dropping back.

    Anyone who has tried and been scared off by what seem to be even more symptoms, and is trying again, take it more slowly this time if you haven't already restarted. If you *have* restarted, stay put, or drop back a fraction at a time if you can't stand the REstartup effects. ABOVE ALL, DON'T QUIT.

    I used Freddd's slow titration method, posted in the Active B12 forum, as a base. This would not exist without his guidance for my own startup.

    Startup *is* disruptive. Your body is struggling for equilibrium at all times. Taking the Active B12s does upset that equilibrium, in a good way, and you feel the effects.

    OK. This is a more general way to begin, that I wrote originally for Arya. She has just quoted an earlier one I described above.

    ===========

    Well, I don't know how to tell you or what to tell you about side effects. What we call the "startup effects" can be fairly intense for some individuals. Particularly since you have had cyanocobalamin shots in the past, but not very recently, there could be some reaction to reactivating pathways.
    >
    >I know you have already gone to the "Active B12 Basics" thread, to find out about the things to get, and where to get them. Freddd suggests, in his post #4 on the thread,
    >To minimize startup effects, start with adnosylb12 [Dibencozide]. This turns on the mitochondria before the nervous system. . . . then [add] 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.
    >>Possibly, to minimize further, start with B-Right, one capsule a day, for five days, and build on that base.
    >
    >Look at this single post by Freddd, for a long, complex description of "titration" methods -- working up from small amounts to an effective daily dose. That gives you the approach. I'll individualize it a bit, to work with what you have, with your wish to avoid 'side effects' -- I'm taking that to mean that you want to minimize the intensity of startup effects. OK
    >
    >You have been taking B-Right for five days.
    >Next add 1/2 tablet of Solgar Folate for two days, then increase to a second 1/2 tablet 12 hours later, for a daily ration of 1 tablet divided into two doses. Keep them both going for the next week.
    >
    >Then take one tablet of Dibencozide [adenosylB12], and cut it in half. Cut each half into thirds. You will then have a collection of "bits." You can divide them into piles of small, medium, and large bits.
    >
    >On your start day, take one bit. Put it under your upper lip, between your upper lip and your teeth, and let it slowly dissolve. In the next 45 minutes you will probably notice some unusual sensations -- in your head, or eyes, or feet, or wherever you have had symptoms. It won't be unbearable, and will fade by 45 minutes or so. When you feel ready to do this again, take another bit from the small bit pile. On that day of starting, work up to a fraction of one tablet of adb12. If you don't notice much, then work up to a half. If you notice symptoms you don't like, then work up to 1/4 or 1/3.
    >
    >Do the same thing the next day, continuing to take B-Right and Folate. If the symptoms are intense, repeat this approach another day.
    >
    >If you're feeling good and wondering what the fuss is about, then go to the medium bits of one Debencozide tablet, and take one, or possibly two, wait 45 minutes. Decide if you want to take more.
    >
    >After five days, you could be able to take half a tablet of Dibencozide [adB12] at a time, 45 minute to an hour and a half apart.
    >
    >If at any time you don't like what's happening and want it to stop, DO NOT quit everything. Just dial it back. If you are taking half tablets, go back to quarter tablets. If quarter tablets are too intense, go back to small bits. Maintain at the level one step lower than you've gotten to, and when you feel ready, start again, perhaps a little more slowly.
    >
    >Anywhere from two to four days after taking 1/2 adB12 tablets at least 45 minutes apart (maybe longer), take one adB12 [Dibencozide] after breakfast. You've had the experience of symptoms fading after 45 minutes, so if you get any reaction to a whole tablet, remember it will fade in pretty much the same time frame.
    >
    >Now you stay on the same stair step for five to seven days. Then cut a Methyl B12 tablet in half, and cut each half in half again, for a 1,250 mcg dose.
    >
    >Add that amount of the Jarrow Methyl B12 to your daily ration. You can put both the adb12 and the mB12 together under your upper lip, between your upper lip and your teeth, and let them slowly dissolve.
    >
    >At an interval that suits your experience, then gradually increase the Jarrow mB12 amount until you are taking a full tablet every day, along with adB12 [Dibencozide] and B-Right and Folate. Also, somewhere in here, you will be taking a daily supplement of fish oil or Lovaza (tm).
    >
    >This is the long slow titration process. If you think the side effects so far have been manageable, and you feel fine, you will probably rush it a bit. Remember that if you feel something you don't like, you can dial back to the next most recent "state" or dosage.
    >
    >I don't think it's wise to dial back and go forward a lot of times. With any intense startup effect, it will fade fairly quickly.
    >If you want my diary of the startup effects I experienced, on a slow startup, search on "soycoffee startup." The first few posts that show up should be the detailed record I kept of *one* successful startup, with minimum troubles but some notable effects -- like head pain!

    That's it! Much success with the Active B-12 Protocol.

    SoyCoffee
     
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  15. cyndyd

    cyndyd

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    Justy: FIRST OFF, ARE YOU TAKING POTASSIUM WITH THE MB12 INJECTIONS? THIS IS VERY IMPORTANT TO EVERYONE HERE THAT IS USING MB12. ON START UP WITH MB12, IT CAN CAUSE POTASSIUM TO DROP. ALWAYS SUPPLEMENT AND EAT YOUR POTASSIUM.

    SECONDLY: PLEASE LIST ALL SUPP'S YOU ARE TAKING. A LIST OF YOUR SYMPTOMS'S ALWAYS HELPS TOO.

    CYNDYD
     
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  16. cyndyd

    cyndyd

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    TO MERYLG,

    Your quote: I have discovered I get major side effects from Methyl B12 and Methylfolate...leaving me with some problems to sort. Maybe I could tolerate much reduced doses

    WHAT PROBLEM'S ARE YOU HAVING WITH THESE SUPPLEMENTS? PLEASE DESCRIBE. ALSO, YOUR B12 LEVEL OF 470 IS STILL LOW. WAS THIS TEST DONE AFTER SUPPLEMENTATION? IF IT IS YOU NEED MORE INJECTIONS/SUBLINGUALS TO GET THIS UP.

    CYNDYD
     
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  17. cyndyd

    cyndyd

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    Valentijn: WHEN I WAS AT MY WORST I WALKED TWICE A DAY. I WAS DETERMINED NOT TO LET THIS GET THE BEST OF ME. I HAVE ALWAYS WORKED ON KEEPING MY BODY FIT. I WAS TURNING TO PUDDING. I KNEW I HAD TO KEEP MUSCLE'S GOING. IT WAS VERY HARD DOING EXERCISES WITH THE PAIN I WAS EXPERIENCING, BUT DID A LITTLE A DAY. WHILE WALKING, I WAS VERY LIGHTHEADED. WHEN I WOULD GET HOME, MY LEG MUSCLE'S WOULD SPASM. SMALL ONES IN CALF AREA. SORT OF LIKE PALPATATION'S UNDER SKIN. MY ARM'S WERE ALREADY LIKE WET NOODLE'S. I WAS VERY WEAK. AS I GOT BETTER, I ADDED PT, AND CHIRO WITH EXERCISE AT HOME TO BUILD MY BODY BACK UP. IT TOOK SOME TIME. EVERYONE HERE IS GOING TO NEED THIS TOO. DO WHAT YOU CAN, JUST START SLOW.

    cyndyd
     
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  18. justy

    justy Senior Member

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    U.K
    Hi Cyndyd, i am taking potassium in a mineral body spray devised by my doctor that contains a wide range of minerals. It contains:
    magnesium, zinc, iron,boron,iodine,copper, manganese, molybdenum, selenium, chromium, vit b12 and vitamin D
    oops now ive looked i see it contains no potassium which i thought it did, why is this important?
    The spray is held in a sloution of DMSO so it is very easily absorbable (i have had problems taking things orally with my gut absorption)
    I also take a spray of extra iron as my ferritin has been very low for years (5 -after one years oral supplementation it went up to 11)
    I also take Co enzyme COQ10 30 mg a day (supposed to take more but it makes me feel strange)
    Magnesium 100mg
    Vitamin C 3 grammes a day in two doses
    A herbal tincture from a medical herbalist containing immune modulators, calming herbs eg valerian etc.
    I have tried to take more supplements but i often have reactions to them and it has taken me a year to get to the level and type of supplements i am on now.

    I really couldnt list all of my symptoms but i have classic M.E, no fibro and i meet Canadian and ICC criteria. Ive been ill for approx 17 years with a long remmission to about 80% functioning for a number of years, although i havenmt been able to work full time for 20 years. I am now at about 30- 40 % functioning.
    all the best,
    Justy.
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    I'm glad you're feeling better, but your experience is at odds with what is known about the mechanism of the disease.

    Please do not advise people to push themselves to crashing as you did, as this can cause damage.

    I'd also appreciate if you type without using capslock. It is very difficult to read, and I had to skip your other posts.
     
  20. cyndyd

    cyndyd

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    Justy, The only thing I don't see on your list that I took is Fish Oil, Calcium and dibencozide (adenosylB12)

    This is a repost from Freddd on Potassium:


    First, let me say that you should know where your potassium tends to be, whether high or low or midline. The differences in symptoms of a quick onset from either taking too much or from sudden changes like can be induced by certain types of rapid healing might be indistinguisable intially. The can both cause muscle weakness or spasms. See symptoms below. This is why contect is important. I will try to describ MY differences and experiences.

    First, my context. I am on a diuretic that reduces my potassium level. Without supplementation or with minor supplementation ( 1 or 2 x 99mg) I tended to be around 4.1-4.2. Starting b12 is a known risk factor for hypokalemia since it can cause sudden maturation of large quantities of red blood cells inducing a rapid onset hypokalemia Other high rate cell formation can do the same so I also had an episode when I started adb12 and my muscles started healing and growing very rapidly.

    For me a clue is whether I am in a relaxed or contracted state. So one night in bed I suddenly started having massivly painful thigh muscle spasms and calf muscles spasming from a completely relaxed state. It took me 20 minutes to make it 30 feet to the kitchen where my vitamins were. The I chewed a couple of tablets and the spasms relaxed in 20 minutes. I took a few more for good measure. The next day a blood draw showed me to have a potassium level of 3.9. I increased to 600mg/day by doctors instructions. It took 6 months for my level to come up to 4.8., and then I had a similar experience except that I was squatting and standing up at the time and my muscles were already in contraction and I couldn't release the contraction. For me at least those are the intial symptoms. Context was everything for me. At the start of b12 induced healing I had one problem. At the end of that rapid healing period and with an increased rate of intake I had the other end
    of the experience. It helps to know where your level is normally at and where you are at in a healing cycle. The incidence with mb12 appears much higher than with cycbl or hycbl because of the sudden onset healing is more likely. Get tested and know you tendencies and your context.


    Hypokalemia
    http://en.wikipedia.org/wiki/Hypokalemia

    Mild hypokalaemia is often without symptoms, although it may cause a small elevation of blood pressure,[2] and can occasionally provoke cardiac arrhythmias. Moderate hypokalaemia, with serum potassium concentrations of 2.5-3 mEq/L, may cause muscular weakness, myalgia, and muscle cramps (owing to disturbed function of the skeletal muscles), and constipation (from disturbed function of smooth muscles). With more severe hypokalemia, flaccid paralysis, hyporeflexia, and tetany may result. There are reports of rhabdomyolysis occurring with profound hypokalaemia with serum potassium levels less than 2 mEq/L. Respiratory depression from severe impairment of skeletal muscle function is found in many patients.

    Hyperkalemia
    http://en.wikipedia.org/wiki/Hyperkalemia

    Symptoms are fairly nonspecific and generally include malaise, palpitations and muscle weakness; mild hyperventilation may indicate a compensatory response to metabolic acidosis, which is one of the possible causes of hyperkalemia. Often, however, the problem is detected during screening blood tests for a medical disorder, or it only comes to medical attention after complications have developed, such as cardiac arrhythmia or sudden death.
    During the medical history taking, a physician will dwell on kidney disease and medication use (see below), as these are the main causes. The combination of abdominal pain, hypoglycemia and hyperpigmentation, often in the context of a history of other autoimmune disorders, may be signs of Addison's disease, itself a medical emergency.
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