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Wrong Diagnosis Site - Fredd's Protocol

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

  1. cyndyd

    cyndyd

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    Valentijn, I'm not sure what you mean by "at odds"? I am certainly not here to push anyone. I am just discussing what I went through, and how I healed. My crash came when I had surgery, when I shouldn't have. Doctor's had no idea how sick I was at the time. I had no diagnosis of B12 deficiency at that time.

    I said "as I got better" when I was referring to exercise, and to go slow. I did not mean that to push anyone if it did. Sorry.

    Thank god I found a webiste that discussed this condition, or I would either be in a nursing home or worse dead by now. If people like myself do not make other's aware of this condition, and share our experience's, the public, and doctor's will never change how patient's are treated for all of this.

    Also, I used larger print, because I know a lot of folk's have a hard time reading the smaller print. I know I did, when my eye's were bad.

    cyndyd
    merylg likes this.
  2. merylg

    merylg Senior Member

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    Hi cyndyd,

    Thanks for your help. The problems I am having with Methyl-B12 5000 x 1 per day (Jarrow) and Methylfolate 800mmcg (as metafolin) (Solgar) x 1 per day are confined to overnight dehydration, even though I am supplementing potassium by eating bananas and sipping Hydralyte (electrolyte drink).

    Perhaps I need to sip the Hydralyte at bed-time to avoid the overnight dehydration?

    The feeling I have is dry eyes, hard to open eyes, and a sense of overall dehydration. Maybe it is not dehydration, maybe it is something else. I recently had a blood test to check and my potassium was fine, mid-range and close to my usual readings.

    (I have been supplementing B12 since that previous B12 level was taken)

    meryl
  3. health_seeker

    health_seeker

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    Hi Merylg:

    If you don't mind me asking what is your sodium level like? Do you have problems retaining fluids? I find that if I don't take in enough salt during the day I'm up all night emptying my bladder and by the morning I'm dehydrated. If I take 3 teaspoons of sea salt throughout the day I don't wake up thirsty.

    merylg likes this.
  4. rydra_wong

    rydra_wong Guest

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    Meryl

    I find this by Rich which may apply to you:

    http://aboutmecfs.org.violet.arvixe.com/Trt/TrtMethylPlan.aspx
    3. A third person had a history of autoimmune disease, including Sjogren's syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced "a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc." She also experienced a severe flare of Sjogren's syndrome, with "very dry mouth, dry eyes, and severe eye pain." Six days after discontinuing the supplements, she had a thorough ophthalmologyworkup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    Something to consider. health_seeker is right. Potassium deficiency causes your muscles to feel tense, unable to relax, and even pulled. I vaguely recall low salt having more to do with feeling dehydrated. Low salt can be low salt or it can be an adrenal issue. Someone in another thread in this warren posted some simple at home tests you can do to get an idea if your adrenal gland is below par. There is a test involving taking your blood pressure upon waking before getting up and then immediately after rising. Blood pressure is supposed to rise a certain amount when you stand and if it does not you have adrenal issues. There are several other tests. You wouldn't have high blood pressure by any chance because the easiest way to tell is if despite having high blood pressure, your b.p. goes low.

    If your dry eyes is due to some autoimmune flare that is another whole rhealm of investigation. Please consider salt and adrenals and get back to us.

    Rydra
    kurt likes this.
  5. rydra_wong

    rydra_wong Guest

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    Jenny, like you my symptoms fluctuate. I think if a supplement makes you feel a certain way, then that is the way the supplement makes you feel even if it doesnt do it all the time, because sometimes other things are blocking it.

    There is a tendency to think of only the methylation supplements as having any importance in the protocol but that would be a mistake. All kinds of things up and down regulate enzyme activity. Heres a list of some of the things that will affect the activity of methyl cycle:
    Methylation (SAMe) Feedback mechanism (Too much, Too little)
    Radical oxygen species (oxidants)
    Anti-oxidants
    Inflammatory cytokines
    Chemicals/Toxins/Medicines (ethanol,)
    Hormones (sex hormones, adrenal hormones, insulin, IGF, etc)
    Neurotransmitters (dopamine, etc)
    Blood sugar/glucogen
    Presence of cofactors (zinc, iron, copper, etc.)
    Heavy metals (Hg, PB, Al)
    Nitric oxide
    Heat
    ph
    etc. (Science has identified very few of the substances that regulate genes)

    Take a second look at Fredd's protocol or my own supplement list. Notice that they also provide many things that regulate methyl cycle enzymes. In particular:
    High anti-oxidant supplementation.
    DHA (fish oil), DHEA, Vitamin K, and nettle all significantly inhibit inflammatory cytokines (according to www.lef.org)
    ph balance maintenance.

    I think you could drive yourself crazy worrying about what will UPregulate this or DOWNregulate that. In general I think of it in terms of NORMOregulating and ABNORMOregulating. The oxidants, chemicals, and inflammatory cytokines ABNORMOregulate and the anti-oxidants, hormones, and inflammatory cytokine inhibiting supplements NORMOregulate. (You have to generalize to get anywhere. Then you test. Then you fine tune only if you HAVE to).

    I should make it clear that I do not choose supplements based on what they make me feel. I am extremely loyal to a supplement if it makes sense that I need it it is a basic nutrient, it has been proven to help others with my symptom, I know a bit about how it works and it strikes me as being an important piece of the puzzle. If so, I put it in play and look for the next puzzle piece because I know it can take many pieces to solve a puzzle. Freddd found the critical puzzle piece for methe knowledge that there were active forms of B vitamins and that some people could not make active forms out of inactive onesthe idea of just using active B supplements for everything so one neednt actually know which enzymes are broken to fix the problem. This is a profound concept!

    When I said that I know how various supplements make me feel I listed some examples and I dont think any were methylation supplements. I started taking DHEA before I found Freddds website and DHEA was the one supplement that made the drastic change for me. In only about 10 minutes it quenches panic/depression and normalizes blood pressure (drops mine over 30 points and keeps it there for 12 hours). It is a potent TNF-alpha inhibitor so for all I know that is how it regulates my enzymes back into functionality. But what is regulated this way can be unregulated. And so some other chemical can come along and cast me adrift again. I do not know if I would have this problem if I actually took methylation supplements in the high doses that Freddd does. I have many things on my to investigate list.

    I got onto WrongDiagnosis because I was a vegetarian and that topic was B12. A vegetarian has to pay attention to B12. I read Fredds list of possible B12 deficiency symptoms and recognized many symptoms I had experienced on the list. It was a revelation to find there was a single other person in the world who ever felt like insects were crawling all over them when they were not, for instance. I cannot tell if Freddds protocol banishes this symptom for me because it is a rare symptom. But Freddd;s protocol saved my life nonetheless.

    Here is what I can tell of the methylation cycle and why its important:
    (1) It normalized my high homocysteine. Every 3 points above normal (6.3) is linked to a 35% higher rate of strokes. Strokes run in my family and I had two TIAs myself at age 49.
    (2) I now have normal levels of carnitine (further evidence my methyl cycle is working). I do not know what my carnitine levels were before. I just care that I am methylating because DNA needs to be methylated to prevent cancer and methylated estrogen is actually being PATENTED to TREAT cancer!
    (3) When I am not methylating I have a terrible weakness and pain in my wrists which goes away when I am methylating. (I am also trying to pay attention to see if abnormally severe back pain can be tied to methylation status (for one of my doctors had attributed it to low Vitamin D but that was not it. I do have this banished almost 100% but not by Vitamin D)).
    (4) I have an insect bite allergy and when I am methylating properly insect bites itch for about 10 minutes and then never again, nor do they swell. (Everyone notices this btw). (Please don't assume this will take care of anaphylactic shock allergies).

    So (1) can tell me exactly how I am doing whether I am controlling my methyl cycle optimally. But (3) and (4) can be my instantaneous rule of thumb guide. As you can see the effects I can actually feel are not major (I am already using DHEA to clear up the lion's share of my symptoms). Proper methylation avoids cancer, strokes, and heart disease. Ill take that!

    I strongly believe you cant control what you cant measure. If you can find a way to measure it, it seems to me you can find a way to control it. Homocysteine is the control IMHO (its relatively cheap and we know what the optimal value should be (6.3). Unlike measures of B12 and folate, homocysteine is an organic acid test which means its results are always useful.

    Lastly I think having the guts to try a full protocol all at once so it has a chance to work helps a lot. I doubt if it can be effective any other way.


    I took an ESR test and was normal so conclude no CFS. I would have guessed otherwise at one time, but no more. I have had a lifelong wide array of disparate symptoms to which I have never affixed names. Many are on Freddd;s list of possible B12 deficiency symptoms. But many are not. And, yes, fatigue is one of them, but I;m anemic, slubclinically hypothyroid, and have adrenal issues. I think that is plenty of reasons for fatigue.
  6. cyndyd

    cyndyd

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    Meryl, Dry eye was a symptom for me also. Vitamin A might help with that. I don't know your age, but being 50, or older, and post menopausal are reasons for dry eye. Others are certain types of drugs used to treat high blood pressure, such as central-acting agents and diuretics
    Antihistamines and decongestants
    Birth control pills
    Certain antidepressants
    Pain relievers, such as ibuprofen (Advil, Motrin, others) and naproxen (Aleve)
    Isotretinoin-type drugs for treatment of acne.

    My neruologist always told me to start the day with a big glass of water. Then sip more throughout the day.

    I would hate to see you stop the mb12 and methylfolate. Most of us saw worsening, or other symptom's arise before healing took place. This is normal.

    ryda has a lot of good information in her last post too.
    kurt likes this.
  7. rydra_wong

    rydra_wong Guest

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    What I was trying to say here is that when you get your methylation pathway working again it provides methyls to other pathways which priorly were blocked and may uncover other blockages (nothing to do with the methyl cycle). In that case it is time to pursue the other blockages (not to blame methylation -- a good thing that you need). That is why getting a good overall health protocol in place is important - none of this hit or miss stuff - to minimize other blocked pathways that can be exposed by clearing up the methylation blockage.

    To put this in perspective, methyls are used in hundreds if not thousands of chemical reactions in the body and basically function to turn them on or off (Ok, I am not sure - maybe they always turn them on?). So your genes are like a big blueprint of all the substances your body can make and methyls are like coffee cups placed on the blueprint. If the gene to make a certain enzyme is "under the coffee cup" then that part of the blueprint is unavailable and that enzyme will not be made. Having methyls available allows your body to say "make this, don't make that" of the set of possibilities (the blueprint).

    Now suppose it takes methylation (or something else in the methyl cycle like mB12) to make thyroxin. Suppose the biochemistry to turn off thyroxin production requres copper. And suppose you are deficient in mB12, thus methyls, but also in copper. When you fix your methylation, you can make more thyroxin but now you may become hyperthyroid because you also have a deficiency which hampers your turning OFF thyroxin production. You need methylation to avoid cancer, to make neurotransmitters, etc. but you cannot make too much thyroxin or you have too fast a heart beat (whch is life threatening).

    So do you back off methylation? If it is life-threatening you may be forced to. But what you need to do is take care of the thyroid condition. The best way to minimize these tyes of scenarios is to put a thorough supplementation plan in place as a preventative, try the methylation protocol, and unless the results are life-threatening, work on any resulting deficiencies that are uncovered (hopefully few).

    I have seen people here claim they are between a rock and a hard place because they need this and cannot tolerate it. The way through this impasse is to stop lumping every symptom with increased methylation and realise that it is allowing other biochemical pathways to come into play that may be broken. In short, break up your symptoms into symptoms, not a monolithic disease. Then you can chart a course.

    Regards,
    Rydra
    kurt likes this.
  8. kurt

    kurt Senior Member

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    MOD - For all posters on this thread (and elsewhere of course), please do not use large print, as that is considered 'shouting' on forums like this. I appreciate that some may have a hard time reading smaller print. On most browsers you can click Ctrl & '+' together (the + above the =) to increase the font size. On a mac that is Command & '+'. You can click those several times in fact, getting giant fonts if you like, or Ctrl/Command & '-' if you want to make the font smaller in the browser.

    Also, this forum has a long history of being focused on the more serious cases of ME+CFS, which generally includes post-exertional malaise. Therefore, advising anyone to exercise, even in a graded way, is poorly received here. We also try to be careful not to give medical advice, rather simply state what has worked for you, what you might do in a certain situation, or present research-based information, as most of us are not licensed medical professionals and could get in trouble for giving medical advice, etc. Thanks!
  9. rydra_wong

    rydra_wong Guest

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    Mery, you mentioned elevated CRP and one of the things I listed that you need to do is get rid of anything that ABNOROregulates your enzymes. I have taken a substantial amount of vitamins my whole life, always including high dose E, and I have no CRP issues. (I just realised I say that based on lab ranges and now I know I should compare my result to what is deemed optimal after analysis of studies). Since I do not have or think I have elevated CRP I know nothing about it except that it is a sign of systemic inflammation (which itself is a sign of inflammatory cytokines and oxidants and these are things you need to get rid of). But the organization I know that knows a LOT about it is www.lef.org (since they focus on longevity issues and this is one). Here is a very informative article about CRP which lists a healthful range of < 0.55 mg/L in men and < 1.50 mg/L in women: http://www.lef.org/magazine/mag2005/may2005_awsi_02.htm?source=search&key=How to lower CRP. They list Vitamin E, carnitine, and fiber as lowering CRP and high glycemic and high fat foods as raising it. They say that excess insulin is a cause of elevated CRP. (Interestingly cysteine can be used to lower insulin - see here (although I have seen better references: http://www.lef.org/magazine/mag2010...e_02.htm?source=search&key=cysteine insulin)*. They also say periodontal disease raises it.

    *Please note that NAC took out Freddd's methylation. There are many references to autistic kids being sensitive to it. I have NO experience with NAC myself. However I do take supplements with natural cysteine in them, such as cruciferous vegetable supplements, garlic, and milk thistle supplements and at the low doses I take I have no issue.

    So I hope the above gives you some choices about how to lower your CRP.

    Now despite all my lectures about how you have to implement an overall preventive supplementation regime, I am nonetheless going to focus on your methylation supplements. I do not see all the basics of Fredd's protocol in play. These are:

    a daily methionine food source (you have to have the substrate to work on!)
    a source of methyls (SAMe, choline, or TMG)
    an active B complex 2x/day (the B vitamins work synergistically and in particular B2 is a required part of the cycle)
    Jarrow mB12 sublinguals 1-2x/day (more?)
    Solgar mfolate (Metafolin) 1 or more(?) x/day
    P5P (not B6)...some consider the amount they receive in their active B complex sufficient. I find I need at least 50mg or I seem to get short of breath. P5P is necessary for the production of hemoglobin).
    Omega-3 (You could try the high DHA vs. the high EPA and see which works best for you. I believe I read high DHA works best for allergies. Unfortunately I take a store brand and can't tell if it is high DHA or high EPA. I bought a more purified health food store bottle and it didn't do the job at the same dose for my allergies so there is a difference depending on the mix and I haven't nailed it down. I take 3g daily but 7-9g a day during an allergy attack...it works and the science behind it is explained by Dr. Barry Sears in The OmegaRX Zone.
    a source of a little extra potassium. The amount I take is equivalent to eating TWO extra bananas/day or other fruit or vegetable with medium potassium levels (You can go here to choose two more fruits/veggies to add to you diet that contain potassium: http://nutritiondata.self.com/tools/nutrient-search (I sometimes use a product called Twango for this. I do not know how much potassium is in it but it is powdered carrots and celery - things that are high in potassium and I like it. It is available here: http://www.iherb.com/Eclectic-Insti...nstant-Health-Support-3-17-oz-90-g/18652?at=0)


    Did we already do the copper discussion? It is not part of the methylation basics but I see you are taking zinc and not copper when generally they should be taken in a ratio to each other (a ratio that science has not definitively determined but which is not 25mg:0). Copper is a cofacto of methionine synthase. I am not so up on zinc but I believe it may be as well.

    Here, let's check the Roche biochemical database: http://enzyme.expasy.org/EC/2.1.1.13 - Ok, it shows zinc as a cofactor.
    And here: http://enzyme.expasy.org/EC/1.16.1.8 Shows methionine synthase reductase as having B2 as a cofactor.
    But the following studies have not been reflected in this datbase yet (idk why):

    in rats: low copper diet reduces methionine synthase activity 21%: http://www.sciencedirect.com/science/article/pii/S0304416599000434
    in men: high copper diet lowers homocysteine: http://www.sciencedirect.com/science/article/pii/S0899900704001509
    in rats: http://jn.nutrition.org/content/137/6/1370.full[/url]
    nueropathy caused by copper deficiency: http://www.mayoclinicproceedings.com.../10/1371.short

    There are plenty of case reports of copper deficient neuropathy, but here's one about the recent denture cream which contained a lot of zinc and thus prevented absorption of copper and caused neuropathy:
    http://www.sciencedirect.com/science/article/pii/S0161813X0900179X

    Myelopolyneuropathy and pancytopenia due to copper deficiency and high zinc levels of unknown origin II. The denture cream is a primary source of excessive zinc
    Peter Hederaa, , , Amanda Peltiera, John K. Finkb, c, Sandy Wilcockb, Zachary Londonb, George J. Brewerd, e
    ----

    oh! - I remember why they can't make any statement about copper...they haven't found a reliable way to measure copper status yet. The above two studies were done by measuring copper intake. Many other studies exist regarding copper and methionine synthase but they are bogus because they look at serum copper measures (and copper is an acute phase reactant).

    Copper deficiency causes an identical neuropathy to B12 deficiency.
    I may edit this with more studies. I certainly had many of interest on my last memory stick.
    Rydra
    Regards,
    Rydra
  10. rydra_wong

    rydra_wong Guest

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    I trailed off on that last note because I found a very interesting paper here: http://www.ajcn.org/content/75/4/616.full.pdf
    It is regrettable that the authors of the paper did not discuss active forms of the B vitamins, but ignoring that bit, there are
    still areas of interest in this paper (which is about taking high doses of various of cofactors to make up for genetic
    defects which make it hard for the enzyme to hang on to cofactors). It's worth a look. For instance, the authors write about
    MTHFR 677 C->T as having a primary effect of making it difficult to hang on to the B2 cofactor so here is a case where giving
    extra B2 may save the day. (I only ever heard of one person (and just recently) having to take elevated doses of B2).
    Most of the discussion at Fredd's site has centered around mB12 and mfolate, but B2 might be a player as well.

    In here is also iscussion of several types of myopathies associated with the mitochondria in which some (not all) of the patients can recover on B2 therapy.

    Regards,
    Rydra
  11. rydra_wong

    rydra_wong Guest

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    Idie, can you possibly go to the Legal Disclaimer at the WrongDiagnosis site, copy it, then edit your beginning post to add it?

    Kurt, Cyndyd was stating her own experience, which is valid. She should not edit her experience but should present it as it is because anything may be relevant. This thread was meant to be about how we got better on Fredd's protocol, which is a version of Rich's protocol. We can only speak to what worked for us. But each of us has tweaked the protocol to work. For instance, if I don't take at least 50mg P5P I develop symptoms of anemia within 2 days. But I don't think any of the above people experiences that. Velha has to take a high dose of carnitine with her protocol (but I do not). Fredd can't take folinic acid (but others can). Cyndyd managed to exercise w/o injuring herself. Maybe someone else can't do that. We each have to experiment a little to tweak this into something that works for us. No insult or harm intended.

    Cyndyd is performing a tremendous service in offering to help those who are still struggling after she has already cured herself. She is a TREMENDOUS resource as she is very adept in finding the exact best reference to explain the protocol to others and you will find that having her here is the next best thing to having Freddd here.

    I seriously doubt that anyone is as sanguine as Fredd is so I hope no one will offend Cyndyd and make her go away!

    Regards,
    Rydra
    merylg likes this.
  12. kurt

    kurt Senior Member

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    Rydra, I think this is a very useful thread, the only reason I commented was because some people are put-off by a consultative tone, such as the example above. There is a fine line between information sharing and medical advice. This forum is not a venue for medical advising in any specific case. I'm not targeting you, obviously several people joined the forum to discuss this topic, which is fine, just want to be sure everyone knows the rules.
  13. Adster

    Adster Senior Member

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    For those supplementing Potassium, who also suspect adrenal fatigue, just be aware that it can make you feel worse. I know I can't tolerate it, if I supplement it I feel noticeably worse the next day.
  14. Jenny

    Jenny Senior Member

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    Thanks for this paper Rydra. Do you have the full reference? Journal title and date are not given.

    Jenny
  15. Jenny

    Jenny Senior Member

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    Thanks for this Rydra. I feel this whole area is extremely complicated, and the paper by Ames et al that you refer to in a later post confirms this by pointing to the importance of knowing what SNPs we have. Most of us don't have a chance of being tested for many of these, nor do we have access to many other reliable tests. And it is very tempting to think that we feel better because of something we are taking at the time, when there is so much going on. The information you and others have given about methylation supplements and other supplements is very helpful, but because of all the complexities we still end up supplementing things in a rather hit and miss manner.

    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'm not sure why you say that a normal ESR leads you to conclude that you don't have CFS (ME?). There is much disagreement among doctors about whether ME involves an abnormal ESR. If anything, most seem to take the view now that many PWME have a very low ESR. Mine was high in the early years, and is now very low.

    Thanks again for all the helpful information!

    Jenny
  16. DrD

    DrD

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    hi Rydra,

    I will chose the Avatar.


    The Digestive enzymes are called Digestive Gold by Enzymedica. It has no fillers at all, no allergens, etc. I don't react to it at all and I am extremely senstive. (no corn, soy, etc as well).

    You can also google it for more information. It is sold on iherb.com

    I will forward you some of the research that i have on hormone disruptors through this site.
  17. rydra_wong

    rydra_wong Guest

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    Potassium lowers your blood pressure (well I don't think it lowers normal blood pressure) but there may be a connection there (since your adrenals are responsible for the body retaining salt, and therefore maintaining blood pressure -- in other words if you have adrenal fatigue you are likely to have low blood pressure). I have adrenal fatigue during allergy season only and then I am too flattened to notice things like this so thanks for adding that detail.
  18. rydra_wong

    rydra_wong Guest

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    Jenny,

    Please note that Idie, Mogy, and Cyndyd have more typical CFS issues and were helped by Freddd's protocol. Perhaps you want to ask them to list exactly what they take?

    I got the ESR lab because a doctor's website claimed all CFSers have an abnormal ESR. It was a cheap easy test and mine is normal so I never wanted to investigate that route further. My genes may be the same as cause CFS or autism and I think my aunts may have had CFS but they have passed away. I have had severe fatigue issues most of my life but there are many things I have (or had) that can account for it so it would never be diagnosed. (My aunts as well - for their fatigue was always blamed on their diabetes). I have had severe neuropathy symptoms, once for as long as a year. To me those were scariest because you cannot imagine what they are.

    My mother, who made fun of anyone who was sick, nonetheless cooked from scratch, added things like brewer's yeast and wheat germ to her cooking, never let us have junk food or pop, and gave us vitamins. (This was the Adele Davis generation). I took a B100 my entire life since I started buying my own vitamins at age 12. My reason was "mood issues". When I read Freddd's protocol I did not like that his protocol had only low doses of B vitamins but I reasoned it was ok since you take it 2x/day.

    I thought of the Ames paper in my sleep last night (my subconscious often alerts me if I missed something important, I sometimes debug computer programs that way). I mentioned that paper because I found it curious that they were citing cases where mega doses of B2 were clearing up some methyl cycle issues and that mega B2 with carnitine took care of some types of mitochondrial dysfunctions. But although I read it I didn't really reflect on the idea that mega doses of B vitamins in general can take care of methyl cycle enzymes that are heat labile or for other reason have trouble hanging on to their cofactors. (They are saying simply taking a B100 may fix many methyl cycle enzyme issues for you). Which may be why I was able to get by most of my life w/o Freddd's protocol. Since B vitamins are water soluble I doubt taking a B100 is as effective as taking a smaller dose multiple times a day. In fact, before Freddd, I knew there were avant garde nutritionists recommending taking smaller doses of B vitamins 3 times a day. MANY people at WrongDiagnosis started out by taking the active B complex 1x/day then later realized they were not taking the full basic protocol, switched to 2x/day, and reported back a GREAT INCREASE IN ENERGY.

    I am trying to point out that Freddd's protocol is designed to work whatever enzymes you have broken because it assumes they all are. He gives a basic protocol to start with and then says if this is not enough for you that you may need to take extra things on his expanded list (some of these are mineral cofactors, some of them are methyl cycle products so if you can't get the methyl cycle working 100% you can take some of its major outputs directly by supplement, such as carnitine). He says you do not need to test to fix your methyl cycle.

    I think in practice if you test you will be able to take fewer supplements because you can concentrate on the ones you really need, and also if the basic protocol is not enough for you, then testing can help you more quickly work out one that works.

    The Aimes paper says that mega doses of B vitamins alone can go a long way toward correcting some of these issues. So you needn't be overwhelmed, you can start there. Fredd's protocol is a mega active B protocol which also concerns itself with absorption issues. I think you need to look at his expanded protocol to make sure you are covering all the bases for good nutrition so that you don't uncover some other problem and blame it in on Fredd's protocol. You need to take steps to prevent the things that dys-regulate your genes through use of such things as high dose anti-oxidants, pathogen killers (particularly if you have low HCL as that is a prime defense of the body against pathogens), you need to maintain ph as enzymes do not work well outside of a narrow ph range. These are all common sense steps for good health for anyone, they are just more critical if you are experiencing problems. (What I am trying to say is that I have too many genetic defects to navigate and it didn't help me arrive at my protocol. What helped was homocysteine tests until I reached the sweet spot. And that's a lot cheaper than a genetic test and is covered under many insurance plans too. Freddd arrived at his protocol without any tests except an initial B12 test and an occasional standard blood test to check his potassium levels). It can be done.

    Here's the citation:

    High-dose vitamin therapy stimulates variant enzymes with decreased coenzyme binding affinity (increased Km): relevance to genetic disease and polymorphisms13
    Bruce N Ames, Ilan Elson-Schwab, and Eli A SilverI think the way to proceed is
    Am J Clin Nutr 2002;75:61658.

    Take care,
    Rydra
  19. rydra_wong

    rydra_wong Guest

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    Thanks, DrD. I am taking a particular interest in hormone disruptors just now. As for Enzymetica, I think they are a great company.
  20. rydra_wong

    rydra_wong Guest

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    Kurt, we are actualy trying to help people follow Freddd's protocol by suggesting things that those that try it may have overlooked or pointing out that what is seen as a methyl cycle repercussion may actually be due to another medical issue. Yes, it does walk a line and that is why I think there should be a disclaimer somewhere like there was at WrongDiagnosis. The tradition of WrongDiagnosis was to try to help individual people with their attempts to follow the protocol insofar as the community could share their insights. We are trying to open people's eyes, but hope that people do their own research and work with their own doctors to make up their minds. I, personally, want to hear all ideas, but I never trust anyone but myself for my health. (And that's too bad because I am not a doctor). Well, so maybe you will have your work cut out for you because of the individual approach we take and we haven't been trained not to "cross a line".

    While on the topic I want to say that none of the reasearch anyone does here except for Rich's (or maybe there are a few here like him, dunno) is remotely complete. A proper review of studies on any given (small) point takes at least 6 months and more like 1-2 years. It has made me uncomfortable in the past to hear single studies being quoted as if they mean anything. Everyone needs to be aware that as researchers are studying things they take wrong turns, and often some fluke in the background can totally skew their results.

    Even when studies are quoted it does not mean you should not go to google.com/scholar and do a search on your own (especially using keyword 'review' -- if a topic isn't mature enough to have had reviews done against it, science only has suspicions but not enough evidence yet), look for papers supporting and denying, and try to make an assessment, then take the whole issue up with your doctor. To me a study is a thought starter...it should open your eyes to possibilities.

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