1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Discuss the article on the Forums.

Wrong Diagnosis Site - Fredd's Protocol

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

  1. cyndyd

    cyndyd

    Messages:
    28
    Likes:
    12
    New York
    Freddd, I am doing ok. I have recently had stomach issue return. It is still on again off again. I continue to take the fab four daily. I am not so committed to the basics. I do try to get them in, just not all of them everyday. The gastritis creeps up on me still. I was having the heart palpatation's too. I went back on prilosec last week to see if it helps. It does somewhat, but the palps are still there. They always get me 3 or 4 hours after dinner, and at bedtime. When I was really sick, the palps always hit me in bed at night. I looked it up and the acid reducer's have an antihistamine in them. This can cause the palps. Also, smoking, and caffine. Ok I do smoke, but only have one cup of caffine a day. The link above said to cut carb's for bacteria overgrowth. I don't know if I could do that, as my body need's them to function. I had thrush a year or so ago, and I am beginning to wonder if the bacteria problem has something to do with my gut issues surfacing on and off. Idie seems to have the same problem.

    The sinus problems are so so at this point of the winter. Our weather has been unusually warm. January outside of Buffalo NY is always very cold, with lots of snow. This year it has been 40s average, and rainy. Today we have snow, and it's in the 20's. Tomorrow it will be 45. Many people feel the effect's of the yo yo weather patterns. Me for one.

    I am so glad you are back here. Just wish we lived closer. Hug's out to you!! Are you on facebook?

    cyn
  2. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Cyn,

    Our weather here is strange too. I haven't used the snow blower yet. It's been in the 40s and 50s much of the time. I have a bunch of new chard leaves growing. The trees are all wanting to bud out so a hard freeze could be a killer this year.

    How are you on ptassium? Low potassium can cause heart palpitations. B-complex only once a day can do the same. ANd I'm not sure about paradoxical folate deficiency. Lack of all sorts of things can casue problems and prevent healing. Chronic sinus problems are also ttypical of b12/folate deficiencies. Have you tried getting rid of all folic acid and folinic acid and trying Metafolin as we are talking about a lot?

    I don't have a facebook account or anything of the sort.
  3. cyndyd

    cyndyd

    Messages:
    28
    Likes:
    12
    New York
    I am getting low on Bright at the moment. I will try to get one without the folic acid. Also next order same with the dibencozide. I think I have the brands noted somewhere. I do take the solgar folate and have since I switched to your suggestions. I take the potassium everyday too 99mg. I have tried to eat more banana's this week too. I just feel groggy/crappy, and chalk some of it up to sinus.
  4. cyndyd

    cyndyd

    Messages:
    28
    Likes:
    12
    New York
    One more question Freddd, Isn't the other dibencozide 10 mg instead of the Country Life brand at 3mg? Do folks take one a day?
  5. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Cyn,

    Ive been suggesting 1 a day to 1 or more per week. I take 5-6 once a week for the CNS penetration.
  6. cyndyd

    cyndyd

    Messages:
    28
    Likes:
    12
    New York
    Freddd,

    Do you have a link, story, or any info on B12 deficiency in children or newborns? I have a daughter who is also low in B12. She is 30 yrs old. She has an 8 month old daughter who has been sickly for 3 months. Colds, stomach issues, the start of pnemonia (sp), diarrea that took weeks to control. She has been on antibiotic's too. They had the baby on acid reducers at 2 months old. She doesnt take them now. I cannot get my daughter to get the baby tested. She is in health care herself as a resp. therapist. Stubborn!! My daughter's level was in the 300's, and she did supplement for a while, and stopped. I am sure when she was pregnant with this baby she was also low. Any help would be appreciated. Thanks
  7. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Cyn,

    That sounds like me and my children as infants. A lot of the problems may be genetic and appear to be multigenerational in a family and sometimes appear to be worse in some and skip other generations. I would search "failure to thrive", "delayed myelination" and similar things on google scholar in conjunction with b12. There are a limited number of childhood symptoms at the bottom of the symptoms list at the bottom of the basics thread. If your daughter is around 300, that is terribly low by realistic standards, low enough for a person to have hundreds of symptoms possibly, she could no doubt benefit herself. Good luck.
  8. Pea

    Pea Senior Member

    Messages:
    124
    Likes:
    1
    I know somebody who has a baby that was prescribed acid reducers. The drs. need to look into WHY the stomach problems are occuring (but they don't, of course) - sometimes it is just a food group that doesn't agree with the baby, it isn't the acid in itself that is the problem - you need some acid in the stomach to digest food.

    As for sinus, I usually take one decongestant just about every day, no big issues, but last week I didn't eat cheese most of the week and didn't have to take one. Ate cheese, and the next morning - yup, sinus headache. Something to consider, Cyndy. I'm not giving up cheese though.
  9. SoniaR

    SoniaR

    Messages:
    12
    Likes:
    1
    India
    Hi Freddd,
    A question on Alpha Lipoic Acid - Is R-Lipoic Acid better than Alpha Lipoic Acid?

    I quote from GeroNova Research website:

    "Alpha Lipoic acid has 2 isomers, one is R and another is S. S isomer is just a mirror image of R. The potent part is only R Isomer. The natural form of alpha lipoic acid is the R(+)-enantiomer, or R(+)-alpha lipoic acid(R ALA). S(-)-alpha lipoic acid is a purely artificial molecule: it does not exist in nature but is produced as a byproduct in the normal method of producing commercial lipoic acid.

    In searching for substantial evidence suggesting the "unnatural" (S-isomer) counteracts the activity of the "natural" form (R-isomer) the below information was uncovered.

    The two isomers, R-isomer and S-isomer, appear to have different biological activity. R-isomer occurs naturally in plants and animals and is the only form that functions as a cofactor for mitochondrial enzymes. The S-isomer is a by-product of chemical synthesis. Chemical synthesis of alpha-lipoic acid results in a racemic mixture (50/50 mix of two mirror opposite isomers) of S-isomer and R-isomer. Within the mitochondria, R-isomer is reduced to DHLA, the more potent antioxidant, 28 times faster than S-isomer.

    Product: GeroNova Research, R-Lipoic Acid, R-PLUS 150 Mg 60 Softgels
    .

    Thanks
    Sonia
  10. Idie

    Idie

    Messages:
    48
    Likes:
    20
    Cyndy and Fredd,

    My daughter who is 28 has very low b12----in the 300's. Interestingly, She was a sickly infant with constant stomach issues which she has battled most of her life until she started on the protocol a year
    ago. So many improvements for her now. Her stomach issues have improved tremendously. I wish I could say the same for myself. Gastritis comes and goes and so does acid reflux. I just cannot seem to overcome it. I invested in a VitaMix so I could eat more healthily....and now the folinic acid issue may make that investment mute. No carbs, no dairy, and no veggies... I'm running out of food choices very rapidly...ha!

    I do take the cofactors and still the stomach issues. Oh, I also do probiotics.
  11. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Idie,

    I find I have to take a lot more Metafolin and that timing is critical for me to stay out of paradoxical folate defieincy and still eat a reasonable amount of veggies that I do enjoy and have a whole lot of nutrients than just folate. Have hope. Various people are starting to find what works for them with this PFD and metafolin timing. With the sharing of this info hopefully you and others will find patterns that help you. I am getting very close to complete healing of the cheilitis. I wonder what other tissues, besides those leading rto IBS, also break down each time and are now healing.
  12. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    56
    Scotland, UK
    Today my boyfriend was feeling quite down, probably due to SAD. I got him to take 1mg of JF mb12 and 800mcg of Metafolin. Half an hour later he said he felt like he'd taken a narcotic.

    Several years ago he took some 5HTP but stopped it due to the same effects which he didn't like. Also, last year I gave him a B-right and he didn't like it because it made him feel light-headed. He felt he'd rather try to get what he needed from food.

    He has a history of depression and about 15 years ago nearly had a nervous breakdown along with painful IBS. He hasn't taken any meds for about 10 years or so apart from the occasional muscle relaxant for IBS cramps.

    He's decided to continue taking the b12 as it's obvious to him that he must be very deficient.

    I just thought I'd pass this info along.
  13. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi April,

    So many of the components of the active protocol affect depression. I had a lifelong depression that lfted progressively as I added the various components starting with mb12 and continuting with adb12, l-carnitine fumarate, SAM-e, zinc and Methylfolate. The b-complex is needed too. Watch out for potassium. With a strong startup like that he will start healing and need the potassium.
  14. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    29
    Oh, for pea cats' sake! You are SUFFERING from angular chielitis and are telling people how you can get rid of it? Ok, here is what I found and I do *not* have it AT ALL. The ONLY time I ever got angular chielitis was when I ran out of Vitamin E! I have always taken a goodly dose of B and do not dispute its importance in angular chielitis but I do not believe you need a drasticallly high dose of folate to get rid of it. I believe a good B complex is ALL plus a good E. I took since I was 12 inactive B100 plus 400 IU d-alpha tocopherol and never got angular chielitis. Whne I was 20 I upped the E to 1g/day which I continued my entire life w/o fail except once. THAT was the only time I got angular chielitis. I did only in th epast 2 years switch to active B's. I did also find that 1g E plus ONLY 2x/day Thorne Basic B (which is active B containing also folinic acid) was all by itself (well I also took 2g C, DHEA, and pregnenolone but do not believe they had any effect) enough to prevent/promptly heal the angular chielitis.

    Looked it up and found low E is KNOWN to cause angular chielitis. I have 18 genetic mutations. Even so, it does not take much B to prevent angular chielitis, but it DOES take E (for me, anyway!)

    Rydra
  15. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    29
    Freddd,

    I got back in today and was trolling around annoying everyone with my opinion for the basic reason of looking for new info. Did not find anything really new so I guess I'll just ask:

    I have this great protocol which actually works. But it is 42 pills and it makes me so extremely nauseous that I can't bear it. So, I, who has all my life been extremely reliable about taking vitamins since I felt so bad w/o them, started skipping and missing. (I never missed DHEA, pregnenolone, C, E (except for a few days), cal/mag, or D). I got totally out of taking methyl supplements which I had never done in my life before!

    So you know of course I started getting horrible symptoms. I cant even describe...just could not bear to be in my skin. Knew what I had to do but still cannot stomach all those pills. Here is what I am taking so far and what I feel is internal trembling. Any suggestion of what to add back next to nix it?

    Thonre Basic B 2x/day
    Soloray cal/mag 4 pills (should be 6 but all I manage is 4)
    sublingual D3 (5000 on alternate days 10,000 - this is prescription)
    2g C
    1g E
    1 curciferous vegetable from LEF (anti-cancer)
    Olive Leaf Extract (big diff between cant live with myself vs I can)
    75mg DHEA
    30 mg pregnenolone
    some amount of estrogen shot in rear by doc every 6 mos.
    50mg progesterone (just started today - it is prescription TBD test next week if I really need it)
    300mh benfotiamine
    K2

    That's it. I sometimes take P5P, mfolate, TMG to see if it makes me feel better but it doesn't
    so I haven't worked back up to taking it daily yet - I know I need them. I proved I did not
    need the sublingual B12 (hcy test perfect either way - as long as I take the p5p, mfolate, and tmg).
    I don't seem to need aB12 (uMMA perfect, makes no diff to me when I take it either).
    I proved I do not need carnitine (blood test) when I get my p5p, mfolate, tmg).
    Not on your protocol, but I also proved I dont need Yaskos charcoal and yucca (serum ammonia tests).

    I am reluctant to just take everything - I want to add things back slowly.

    The thing that is bothering me is internal trembling. It is something I have suffered from
    lifelong but in the past only during PMS. Menopause is PMS forever. I have not suffered
    from it for the most part under the full protocolm, but even then on occasion I did (just
    much less frequently). So not sure I have a good handle on it really. What, besides, everything
    would you specifically add back / try next?

    Thanks.

    Rydra

    Paradoxically as I ask this question I do feel more peaceful, so maybe it was just amount of time back on active B's, but I don't think that's all there is to it. I also drank a boatlaod of milk today and maybe - well dairy is one of the top 5 sources of potassium in the American diet, so that's a possibility. Not sure of anything. I don't have this one nailed. Thanks
  16. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Rydra,

    Oh, for pea cats' sake! You are SUFFERING from angular chielitis and are telling people how you can get rid of it?

    I've been through 20 cycles of it in the last year so I have a LOT of experience with it. I have had it all my life. I have been taking 400 iu of E daily for the last 38-40 years, more or less. I went to a 4 factor E in 1978 when I found it and switched to an 8 factor E some years ago when I found it to be available.

    You bet I know cheilitis. I can make it come and go on demand. The problem is that if I screw up just a litlle it starts coming back. I can feel it in hours when oit starts coming back as it starts to tingle 2 days before it is burning open sores. I can pout an end to it in hours by avoiding veggies and taking extra folate.
  17. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City

    Hi Rydra,

    But it is 42 pills and it makes me so extremely nauseous that I can't bear it.

    Tell me about HOW you take all these please.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,185
    Likes:
    1,529
    Midwest, USA
    Freddd,

    I tried to send you a PM last week. Did you receive it?
  19. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Jenny,

    It sounds as if we have rather different conditions, and reading Freddd's posts suggested that he too has (had?) a different condition from many of us with ME. I don't have 'fatigue' by the way, rather a profound weakness and exhaustion, and extreme continuous flu-like symptoms.

    I am not currently sick with ME. CFS or FMS. I do have some damaged from a car wreck and neurological damage. "rather a profound weakness and exhaustion, and extreme continuous flu-like symptoms" I had this for almost 17 years. And a whole lot more. I was totally unable to exercise for that entire time and a couple of years after. It wasn't until I had the turnaround with adb12 and l-carnitine fumarate that my ability to exercise came back. I had been on the adb12 for 15 months by that time. Everything was slow. During the 17 years going to the store shopping for food, when I was able at all, could take days to a week to recover from. Sound familiar? It took me 5 years of carefully paced exercise to rebuild my body after all thye needed items were in palce. I also found that such rehabilitation was essential to be able to finish healing and cause the muscles to repair themselves and form more mitochindria thereby giving an increase in capacity. It took two years to reach a turning point where very little exercise became possible. I started by walking a few hundred feet twice a week. Then each time I walked one driveway farther, about 50-60 feet in this suburban area.

    While the manifestation of my illness may not have been identical to yours in every specific, I suspect that we had most of it in common. I don't know if I understand a distinction between severe "fatigue" as compared to "profound weakness and exhaustion". In any case I was diagnosed with FMS and CFS. ME isn't a USA diagnosis, and most especially not in 1980 through to 2000, the last time I had any diagnostic work. In 1980 I was already looking for causes. In 1979 I was able to jog 10 miles 3 times a week. In 1980 I couldn't. In 1981 I had to change what I was doing becasue I couldn't manage the physical parts of the job of being an insurance a securitities agent, too phsical and that is when I settled down at a computer terminal as typing was the most rigorous exercise I could manage. For the next 23 years I lost everything in my life a piece at a time.
  20. Freddd

    Freddd Senior Member

    Messages:
    4,304
    Likes:
    684
    Salt Lake City
    Hi Rich,

    Very interesting. It's taken me a while to dig this out but I'm glad to see it.

See more popular forum discussions.

Share This Page