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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Wrong Diagnosis Site - Fredd's Protocol

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

  1. rydra_wong

    rydra_wong Guest

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    Interesting study says copper is used by SAHH enzyme in the methylation cycle and required for nerve growth:

    NGF promotes copper accumulation required for optimum neurite outgrowth and protein methylation
    Barbara Birkaya, John M. Aletta
    Journal of Neurobiology
    Volume 63, Issue 1, pages 4961, April, 2005
    The role of copper in biological phenomena that involve signal transduction is poorly understood. A well-defined cellular model of neuronal differentiation has been utilized to examine the requirement for copper during nerve growth factor (NGF) signal transduction that results in neurite outgrowth. Experiments demonstrate that NGF increases cellular copper content within 3 days of treatment. Copper chelators reduce the effects of NGF on neurite outgrowth and copper accumulation. The effects of tetraethylene pentamine (TEPA), a copper-specific chelator, are reversible by removal from the culture medium and/or by addition of equimolar copper chloride. Because previous work demonstrated that NGF increases protein methylation in PC12 cells, we examined whether TEPA also inhibits S-adenosylhomocysteine hydrolase (SAHH), an essential copper enzyme involved in all protein methylation reactions. In addition to direct in vitro inhibition of SAHH, we show that TEPA decreases protein arginine methyltransferase 1(PRMT1)-specific enzyme activity in PC12 cells and sympathetic neurons. These data comprise the first biochemical and cellular evidence to address the mechanism of copper involvement in neuronal differentiation. 2004 Wiley Periodicals, Inc. J Neurobiol, 2005
  2. rydra_wong

    rydra_wong Guest

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    DrD, I was looking a little bit into rosacea...which has a long history of being blamed on h. pylori...looks like reviews have refuted that of late. I see that it's connected to gut issues though and look what I found about gut issues (I knew about this paper as I have had diminished HCL myself for at least 5 years) but I wasn't sensitized to CFS at that time. Here is a very interesting quote from the paper:
    http://orthomolecular.org/library/jom/2002/pdf/2002-v17n03-p163.pdf

    Niacin (Nicotinic Acid) a Putative Treatmentfor Hypochlorhydria: Re-analysis ofTwo Case Reports
    Jonathan E. Prousky, N.D., FRSH;1 Claire Kerwin, N.D.
    Parietal cells contain the largest concentration of mitochondria among all eukaryotic cells.

    So that's probably why so many CFSers have gastrointestinal issues (and also infections because HCL is the PRIME defense against infection). And it's disquieting to me because I also have that issue. I take 1g. Olive Leaf Extract/day to ward off any issues from not enough HCL. If you think rosacea is connected to gut pathogens, you might try Olive Leaf Extract (it is a vasodilator though so if you have low b.p., then not a good idea).

    Interestingly 5 years ago when I discovered I wasn't making much stomach acid I tried all kinds of things to raise my stomach acid levels but the only thing that would make my stomach growl was estrogen (after PMS there was life!). And yet it was a pathetic growl, like most of the parietal cells were gone or repressed at 48. I tend not to think about that because I have no pathogen growth and nothing upsetting me, but it is probably the reason I have to take so many vitamins.

    I thought I'd mention that I used to have ulcer symptoms but I killed h.pylori with Olive Leaf Extract, Oil of Oregano, and 3 days of colloidal silver. Did that 20-30 years ago and no ulcers ever since.
  3. Rockt

    Rockt Senior Member

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    To anyone who has radically improved from Freddd's protocol, especially those from Wrong Diagnosis, how long didi it take to feel... radically improved?

    I've been at it since March. Had a decent improvement in physical energy, crashed big time, have gotten a decent degree of the physical energy back, (walking daily, less PEM), but still suffer badly from mental PEM and brain fog.
  4. aprilk1869

    aprilk1869 Senior Member

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    All I can tell you is that my Dad regained his health completely in about 3-4 months.

    However my Mum is still struggling and I'm concerned she'll need injections but that's not really possible here and would need to buy in powder from China to make up the injections. Instead I want her to get her amalgams out as she had a lot of dental problems prior to getting ill as she was grinding her teeth.
  5. rydra_wong

    rydra_wong Guest

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    My radical improvement FEELING came from taking DHEA. However I will quote to you from Velha at WrongDIagnosis who had the results you are looking for:

    Velha:
    As a matter of reference I took my first jarrow mB12 ~mid-Sept 09, by mid-Nov 09 I was tolerating injectable mB12 (equivalent to 50 mg sublingual) doses without any issues.

    Jan 10, 2010 JN 10, 2010
    I have to add that I am feeling better than I was 4 months ago by a long shot, but still have a ways to go...

    MAY 8, 2010
    I just wanted to stop by and let everyone know that I am continuing to improve. I am aggressively following many of the suggestions discussed here and have added to that also.
    I have had to tackle the problem of my digestive system separately and have had to supplement amino acids while that heals, but I am continually getting better everyday.
    My brain fog, my biggested stumbling block, is improving as my digestive health improves.
    I am working again and doing well. I am busy, it is nice to have my life back!
    I'll be back to check in and learn about any new suggestions as often as I can. I hope all of you are improving also.

    ----------------
    She took Freddd's full protocol, but played with dosages to make it work for her. She said her brain fog was related to her digestive issues (worse after she ate). Due to her digestive issues she was found to be low in amino acids and had to supplement. She also tried a large dose probiotics for a time (which may have helped at first but not later). She has to take products to kill pathogens (I also have low HCL and take 1g Olive Leaf Extract/day).
    She wrote this:

    Posted July 2010
    Have you ever tried any of the things that helped my brain fog? If I remember correctly your fog is associated with eating (as is/was mine). If so, here is what worked for me - 2.5g of carnitine 2x's per day and 5 x adB12 all at once, once per day timed with a 7.5 mg mB12 injection. (I put them under my lower lip and go to sleep)

    This worked immediately. I discovered this combo in December and thus have had time to play around with it. I have been able to reduce the carnitine without much impact on brain fog - but eventually my fatigue was impacted.

    I have tried to reduce the adB12 but typically notice increased brain fog with any change in that timing or dosage.

    Also - I was reading about SIBO and decided to give NO probiotics a try and very interestingly stopping the probiotics in combination with taking natural antibiotic/antifungal (fresh garlic, olive leaf extract, oregano oil) also reduced the brain fog. After stopping the probiotics I started to notice brain fog in relation to eating - that is, it gets worse after eating and after eating certain things (vegetables are particularly bad).

    Over several months the brain fog dispersed to the point that I did not notice it and could eat certain things that used to seem to cause it. I did a trial by taking a huge dose (500 billion of the custom probiotics #6) in one day. From that day on I again noted brain fog in relation to eating - to me this translates into too many bacteria of any kind in my small bowel - it does not matter if they are the 'good' for you kind or not, they are apparently bad for me at this time.

    This test was ~1.5 months ago and I am again better with continued use of the antibacterials, but it is slow going and I won't be trying any probiotics again for a long time!!

    -----

    I asked her how much carnitine she is taking today and she says this:

    I had to take 2.5 g of carnitine fumarate (patented by sigma tau) very critical to take this form TWO times a day on an empty stomach - being sensitive I could tell the difference!! Doctor's Best and Jarrow both use this patented version and are the only two brands I will use. I tried many forms (carnitine tartrate, acetyl-carnitine and many brands because this stuff costs so much so I know which work and which don't - - a vitacost bottle that supposedly contained same product also, but it DID NOT contain it or had so much less than it said it did that it was a total waste of money! It's a shame these things can be so variable as people may make conclusions about certain supplements when really it was the manufacturer not the particular supplement ...

    I've been able to lower this to 2.5 g once per day, but just this week tried a few days off again (I"m always testing things) of it again and was all of a sudden lying around all the time with no "motivation" to do anything, I put that in quotes because it VERY much feels that way but obviously is some sort of psychological response to not having any energy, within a few hours of restarting I was running all around catching up on everything I"d let go...there are known genetic disorders that make some require more carnitine than others (fatty acid oxidation disorders), anyway, I'm not sure how common they are or how likely it is for someone else (outside my family - as my sister has come on board and now takes it too, amazed at how much motivation she has whenever she takes it) to benefit, but it's definitely worth a trial...others may need some other mitochondrial co-factor - ALA, CoQ10, d-Ribose, etc....

    Regards,
    Rydra
  6. rydra_wong

    rydra_wong Guest

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    Velha brings up a good point. Fredd's protocol is very much concerned with brand names - the brand names he recommends have been tested by sensitive individuals to have effectively absorbable and potent dosages. Prior to Freddd's protocol I was unaware there was any difference between one vitamin and another besides fillers and chemical form (obviously there is a difference between hydroxycobalamin and methylcobalamin). Freddd finally told me that the difference between one 'reputable' brand and another 'reputable' brand is 100% to less than 1%. So some brands of some supplements really are worthless.

    Regards,
    Rydra
  7. Rockt

    Rockt Senior Member

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    Thanks for the replies. Maybe I'll try upping L. Carn. Fumerate, (currently take 855mg - Dr.'s Best - 2x/day).
  8. Idie

    Idie

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    Dear Cyndyd,

    Hi Cyndy---if you are reading this thread, could you do me a favor and send a private email to Fredd to see if he is ok. I used to have his private email but now I can't find it. I know that you, Kevin and Fredd emailed privately for a while. I am getting concerned because it has been a long time since Fredd has posted. thanks much!!

    Idie
  9. rydra_wong

    rydra_wong Guest

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    Don't forget it was pathogen killers (Olive Leaf Extract, Garlic, Oil of Oregano) which helped her brain fog (if your brarn fog seems to be tied to what you eat, then you might consider that). Also she said (as did others) that brain fog can be due to thyroid problems (so make sure you've had these things checked: TSH, FREE T4, FREE T3. REVERSE T3, and the two thyroid antibodies) and I want to add that also adrenal issues can masquerade as thyroid issues and potentially cause brain fog (so in my case salt would clear it up).

    Also just in case you missed it, Velha is taking a high dose of adB12 (adenosylcobalamin, which is key to the Kreb cycle, which is key to energy production), something sold by name as dibencozide (and the brand the group is using now is Source Naturals becase it is free of folic acid).
  10. rydra_wong

    rydra_wong Guest

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    I found an interesting book online which discusses methyl cycle mutations. The one I was able to read about w/o buying the book was CBS (but there are bits in here of general interest too - particularly the bit about Vitamin A and selenium -- see the bottom for that):

    http://books.google.com/books?hl=en...QuGbvGuhA82tfMNQnkAzw9_7A#v=onepage&q&f=false

    CBS deficiency

    (I know Yasko screens for CBS genetic defects that are supposed to be UPregulations, but in my case despite two such genes my CBS was DOWNregulated by environmental factors - and I was not exposed to any unusual toxins at the times I have been measured -- which goes to show that your genes are only part of the picture and you cannot replace a lab test for SAMe or homocysteine (I think the homocysteine lab is cheaper).

    Nutrition management of patients with inherited metabolic disorders By Phyllis B. Acosta

    Methionine (MET) and cysteine (CYS) requirements have been studied extensively over the past decade using C-tracer balance approaches. These studies demonstrated that the MET requirement is much lower when CYS is in sufficient supply to contribute to overall methyl-group needs For instance, in the presence of excess dietary CYS (>21mg/kg), the obligatory MET requirement in adult men averaged 4.5 mg/kg/day. The minimum obligatory MET requirement is defined as the intake that cannot be replaced by taking CYS. From this finding, a population-safe minimum intake (+2 SD from mean) for MET was estimated at 10.1 mg/kg/day. In contrast when adult men were fed a diet devoid of CYS, MET needs were greater, with a mean of 12.6mg/kg and a population safe estimate of 21 mg/kg/day.

    Because of the block in transsulfuration of HCY to CYS in CBS deficiency, cysteine becomes an essential amino acid in this disorder.

    Cysteine supplementation is often overlooked in treatment of patients with CBS deficiency but can help improve metabolic control.

    Lee et.al., When plasma cysteine below 170 umol/L, free HCY was elevated above 30 umol/L. When plasma cysteine was above 170 umol/L, free HCY was below 5 umol/L.

    For adults > 19 with homocysteineuria, recommended intakes are MET 5-19mg/kg, CYS 20-30mg/kg. The listed CYS requirement is elevated to insure adequate sparing of MET.

    [...Much discussion of the amounts of other methyl supplementation in CBS mutations followed. Some discussion of 3 cases in which betaine caused cerebral edema, one possibly connected to a MAT enzyme mutation....]

    [Then this:]

    Vitamin A status may be impaired in patients with CBS deficiency since concentrations of serum retinol were subnormal after retinol administration. Oxidation of retinol by the SH groups of HCY secreted into the gut is hypothesized as the cause of the reduction. In addition supplementation with selenium was required to maintain selenium status in two boys with CBS deficiency.

    --------
    Note that it is proposed that oxidation of Vitamin A, and possibly selenium, may be caused by HCY (and it does not take a CBS mutation to have elevated HCY).

    I would like to add that, according to a college biochem text, a classic sign of Vitamin A deficiency is a goose bump-like appearance of the skin called keratosis pilaris. Both Velha and I have had this (just a little on my arms, not so's you'd notice, you know?) at various points in our lives. Perhaps due to HCY oxidizing Vitamin A. In fact, can't do it now, but I'd like to look into whether rosacea may be linked to a Vitamin A deficiency also, of interest for DrD. Velha lectured me one time that just as we take only the active forms of the B supplements to make sure we can metabolise them, so too should we take the active form, Vitamin A, rather than Betacarotene. I do not claim to know a thing about Vitamin A, what dose, what form is wise, etc. It's just something worth looking into I think.

    -----

    Huh. Here's an old-time study into keratosis pilaris where they are trying to decide if it is really caused by Vitamin A deficiency...and they noted that supplementation with an oil containing significant Vitamin A gav good results, while an oil dveoid of Vitamin A did not, but that "some cases did not improve unless the intake of protein was increased vitamin-B complex added and to the diet." Which kindof harks back to B vitamins to lower homocysteine and prevent oxidation of retinol (maybe?)?
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2181978/pdf/procrsmed00558-0037.pdf

    Cheerz.
  11. richvank

    richvank Senior Member

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    Why was Freddd slammed when he took glutathione? Maybe this explains it.

    Hi, all.

    I have been puzzled about Freddd's body's response to glutathione ever since he reported it. I think I now may have an explanation. A recently published paper from Korea looks as though it explains it. I've pasted the abstract of the paper below. The full text is available free from PubMed.

    This is the story: In the cells of a person who has normally operating B12 processing enzymes, there is an enzyme called cblC. Relatively recent research by Ruma Banerjee's group in Michigan had shown that this enzyme removes ligands (cyano-, methyl-, and adenosyl-) from the corresponding forms of B12 that come into the cell via the normal transcobalamin transport pathway, and it uses glutathione to do so, acting as a glutathione transferase, and binding glutathione to the ligands. Other research has indicated that glutathione plays a role in protecting cobalamin from reactions with xenobiotics.

    Based on this new paper, it appears that cblC also then protects cobalamin from reacting with glutathione (which is normally inside cells) and forming glutathionylcobalamin. In addition, if some cobalalamin does react with glutathione to form glutathionylcobalamin, normal cblC has the capability of taking it back and passing it on to be used to make methylcobalamin and adenosylcobalamin for use by the cell.

    When you put these together, it looks as though glutathione is not only used in the removal of these ligands if they come in bound to cobalamin, but glutathione also acts as a protector of cobalamin from reactions with toxins until it is picked up by cblC and used to make the right amounts of the two coenzyme B12 forms needed by the cells.

    I have suggested in the past that Freddd might have a mutation in cblC, and I think this paper makes that explanation more likely. It would explain not only why taking glutathione was so devastating to Freddd, but also why low dosages of other forms of B12, such as cyanocobalamin, are not helpful to him. Either of these would result in formation of glutathionylcobalamin, and I suggest that his mutated version of cblC is not able to retrieve the cobalamin once this has happened. The only thing he has found to work for him is very high dosages of both methyl- and adenosylcobalamin. I suggest that the reasons are that he needs to bypass his mutated cblC enzyme and also he needs to overcome any losses of the coenzyme forms of cobalamin by reaction with intracellular glutathione. To accomplish this, he takes large enough dosages of the final coenzyme forms of B12 and diffuses enough of them directly into the cells so that he can satisfy the need of his cells for these coenzymes.

    I maintain that in contrast, in most people who have ME/CFS, there is a normally functioning version of cblC. The problem these people have is that glutathione has gone too low, i.e., it has become depleted. Therefore, not only is there not enough glutathione to help remove the ligands, but also there is not enough to protect cobalamin from reactions with toxins. That would explain why large dosages of hydroxocobalamin work for most of these people, and also why people who have nebulized hydroxocobalamin together with glutathione have received benefit. They receive both B12 and glutathione in this way, the B12 is protected from loss by reactions with toxins and their normal cblC is able to take cobalamin from glutathione and use it. I think all of this fits together well. It will be interesting to see what Freddd thinks about this when he comes back. Word on another thread is that he's planning to come back soon.

    Best regards,

    Rich


  12. Rockt

    Rockt Senior Member

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    This is very interesting. Thank you.

    I've had severe problems with gas and bloating in the past and testing revealed dysbiosis. 3 things have helped tremendously: 1. low carb diet 2. Freddd's protocol 3. (2) Betaine HCL caps after dinner. However, my gut isn't perfect, with onions and garlic, (which I keep hearing are wonderful healing foods), causing the same problems. I don't find brain-fog symptoms worse after eating, though. In fact, it might be a bit better just after eating, but only temporarily.

    I have a couple of questions re the natural pathogen killers, (Olive Leaf Extract, Garlic, Oil of Oregano): 1. How does one determine what amount of each to take? (I know some trial and error is required, but is there a baseline to start at?)
    2. Can these supplements be taken indefinitely or should they be cycled?

    Re high dose Ab12, I find the Country Life brand, (w/ folic acid), gives a little energy, whereas the source Naturals brand does nothing, or even seems to make me a bit tired. How does one know if folic acid is a problem? I'm thinking if I've been taking the Country Life brand Ab12 since March and haven't had any major reactions, I'm probably alright, but then I'm not well either, so I'm not sure.

    Finally, re Mb12 injections:

    From AprilK:

    "However my Mum is still struggling and I'm concerned she'll need injections but that's not really possible here and would need to buy in powder from China to make up the injections."

    Since I've plateau'd on sublinguals, I've been thinking about injections. However, I live in Canada and there are no docs that I can find who will prescribe it. Is there a way to buy the pharm. grade powder and make my own solution?

    Thanks again for all the great responses.
  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Brisbane, Aust
    Rich, so taking glutathione in addition to the B12 is beneficial for many of us? Or is the B12 sufficient?
  14. mogy

    mogy

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    Canada
    Hi Rockt,
    I know of only one person who bought crystals from China and made up his own injections. Kevinmillhill from the wrongdiagnosis/bettermedice forum. He hasn't posted for the last year. Post #6851 on the "B12 deficiency is commonly misdiagnosed" thread outlines what he did. It looks like a lot of trouble.
    I am in Canada as well(Edmonton), and when I first determined that B12 was my problem, I wanted injections. Now, I feel the sublinguals are doing what I need.
    I had phoned all of the NDs in Edmonton, because my MD was not interested in giving me a precription. I found one, that I was able to convince to give me a vial(I didn't get a prescription), that she had componded in a local pharmacy.
    I just phone the pharmacy, told the pharmacist my story, and I think I can convince him to give me more injectable MethylB12, and/or a doctor who will prescribe it. I just have to go meet him in person.
    The reason I am saying this, is that you may find the pharmacists in your area are more helpful getting the MB12.
    Good luck,
    mogy
  15. Idie

    Idie

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    Hi Rockt,

    Although I am from the US, I can tell you that I talked to the compounding pharmacist first so that I could educate the pharmacist on my issues and then when I saw my doctor, I asked her to contact the pharmacist. this turned out to be the key. Once the compounding pharmacist talked to my doctor and explained dosing etc, my doctor was much more comfortable. You don't have anything to lose by talking with the compounding pharmacist. Good luck.
  16. aprilk1869

    aprilk1869 Senior Member

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    Scotland, UK
    I've just been reading this regarding liver detox:-

  17. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Everyone has stinky pee after eating asparagus. The ones that think they don't just can't smell it in their own pee, but other people can. Yes, there was actually a study :p
  18. taniaaust1

    taniaaust1 Senior Member

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    Hi there..

    I just wanted to let you know what what you said there is actually very wrong for some of us who have ME. I have autonomic dysfunction with the ME which causes my BP to go sky high when I stand (one minute of standing put my BP up to 170 and it was still raising.. it was normal when I was sitting and laying).
    I also have had out of normal range sodium, low salt and I also have out of normal range, low cortisol which shows up on my tests.
  19. rydra_wong

    rydra_wong Guest

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    Tania - not sure from your msg what you think I said wrong? Maybe I was unclear but I was actually reporting what my doctor said to me - he wanted to determine if I had adrenal issues by measuring bp laying down and then standing...

    So...not sure what?

    Take care
    Rydra
  20. rydra_wong

    rydra_wong Guest

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    Hi. You dont need onion or garlic for killing pathogens...just something that kills pathogens - whatever works for you. If you can actually judge the correct amount of HCL to take then maybe u do not need pathogen killers at all. I dont take HCL because I need different amounts and find I can burn myself so I'd rather not.

    Olive leaf extract is a vasodilator and it is significant enough that I can feel it (I take 1 g.). I took it every day even while I ad severe adrenal issues during allergy season. Not that I would recommend anyone else do that but I frankly (a) did not have a clue and (b) love the stuff. No harm came to me as a result. I think I would rather treat the adrenal issue myself than stop a supplement that usefl to me. I think Velha takes a half gram or maybe even only 400mg. We both take garlic as well. I only take it because I like sulfur products (I may be one of those who need cysteine to allow me to take less methionine because of my CBS gene). It is supposed to help my bp but it does not. It is supposed to kill germs - heck if I know. I just like it. Oil of oregano will kill ANYTHING. It is very expensive. Velha takes it every day. I take it only if I have a serious infection. I doubt it will bother you except nasty taste. So if u can afford it consider that one maybe. I just keep it on hand like u would keep aspirin on hand. Play around until you find something that works. I am SURE there are other plants that kill pathogens. These are just the ones we both found that we know work. I went to a health food store and asked them what they recommended and that is how *I* found them.

    Taker care
    Rydra

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