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Things of Beauty? Joy Forever -- Even with ME/CFS
I spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
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Just like Fredd?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Idie, Sep 13, 2011.

  1. Idie

    Idie

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    Hello all. I'm new here but have been on posting on the Wrong Diagnosis forum for nearly three years. I have learned a great deal from all of you and have been reading here frequently for many months. Rich, I very much appreciate all the perspective that you provide and your willingness to help sort through this maze.

    I have been on Fredd's protocol for nearly three years. You have likely heard a story similar to mine BUT I thought it would be helpful to Rich and others to know that Fredd's case may not be that unique. The reason I come to that conclusion is that I, too, cannot be off of the protocol for any more than a few days and all the symptoms come raging back. My sister-in-law is in the same boat.

    This was my regimen each day. 3 of the 5,000 sublinguals per day. 1 Adeno B12, Fish Oil, BComplex, Solgar Metafolin 800 msg, Zinc (15 mg). I did this for nearly 2 years but could not fully recover. I tried many of the other co-factors. I had continuous buzzing/tingling in my hands and left shoulder. When I switched to injections I had pretty significant start up and then things really improved.

    I have now been on the injections of Methylcobalamin (7-10 mg per day) for over a year. Many things have improved but if I go more than 2-3 days without an injection I relapse very quickly. The first symptoms that begin to emerge when I stop is terrible gastritis and shortness of breath.

    Here is what I have learned:

    The symptoms I had began nearly 10 years ago and were always explained away. By the time I figured it out significant damage had been done.

    It takes a VERY long time to heal once nerve damage begins.

    I have not permanently healed and must stay on the protocol or risk having a bad crash and I can barely function. I do not want to ever feel like that again. If I did have a methylation block, it doesn't seem to have lifted in three years of pretty aggressive treatment.

    If I go off the protocol the first symptoms to appear are severe gastritis and shortness of breath and then the tingling and internal tremors begin.

    In the last three years, I personally know more than 10 people that this has happened to. That is a lot. Something is going on that medicine and science has can't seem to figure out or have explained away.

    I so very much appreciate the debate on this site as well as the continuous research that those who post so willingly share.

    Oh, as an aside. All the testing done by my physicians came back "normal".


    Rich---do you have any thoughts on being "dependent" on the methylation protocol because it appears that Fredd and I fit that category.
  2. xchocoholic

    xchocoholic Senior Member

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    Thanks for stopping by. Congratulations on you recovery even if it is supplement dependant. I acheived similiar results from taking the toxins out of my diet. Are you aware of the DAN protocal, especially the gfcf diet ?

    I just have a couple of questions ...

    Were you diagnosed with me/cfs and did your diagnosis include dysautonomia and pene formerly known as pem ?

    If so, what tests determined your me/cfs diagnosis ?

    Do or did you have a sleep disorder ? For me this is important because after taking 1 mb12 and 1 adb12 for a few months, I stopped being able to sleep entirely. The same thing happened with p5p.

    Thanks .. X
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Well done. Thanks for posting your experiences.

    I wonder if the sublingual dosage was too low. You would get less B12 from the sublinguals than you would from injections. So you might try increasing dosage even more than the 15000. There shouldn't be any difference. Maybe Fredd or Rich could comment on this.
  4. Rockt

    Rockt Senior Member

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    Hi Idie.

    Since you started the injections, have you changed anything else? Or are you still taking 800 mcg Solar MF and 1 Ab12 every day? These amounts, I think, are contrary to what Freddd recommends - I think he would recommend more MF and less Ab12, but hey, if it's working...

    How improved would you say you are?
  5. baccarat

    baccarat Senior Member

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    I had the same problem. I only tolerate B12 hydroxycobalamin which has a rather calming effect on my nervous system, other forms get me in a uncomfortable state of hyper-arousal. I also do not tolerate Folinic acid and P-5-P for the same reasons.

    I also have had a similar experience. If I go off the protocol symptoms creep back in...which for me are brain fog and fatigue, fortunately no nerve issues.

    I've read this section quite a lot recently in search of ideas. It would be helpful to have some light / discussion around the potential causes of a block in methylation and what can be done to get to the root causes in order to solve the problem.
    Anybody any thoughts?
  6. richvank

    richvank Senior Member

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    Hi, Idie.

    Thank you for posting!

    I would very much like to understand what is going on in Freddd's body, as well as yours and those of the more than ten others you mentioned.

    I can think of a couple of possibilities to explain what you have experienced. One possibility is that B12 is not readily transported across the blood-brain barrier for some reason. I think this would explain why you experience neurological symptoms (which would include at least the tingling and tremors, and maybe the others, also). Getting a higher concentration in the blood would tend to push more across by diffusion (which is driven by concentration gradient), thus making up for less than normal transport by the normal transporters.

    Another possibility is that for some reason your cells are not able to perform the normal intracellular B12 metabolism, and thus are not able to produce methyl B12 for themselves. This would suggest a problem with the methionine synthase reductase reaction, which uses SAMe and NADPH as well as B2. In your case, you mentioned that the symptoms didn't start until about ten years ago. I gather that you were relatively healthy before that. Even so, the basic issue could still be genetic in nature, since some genetic variations don't produce effects right away at a person's birth, but show up later in life.

    As you may know, there are several inborn errors of metabolism that involve intracellular B12 metabolism that have been identified in various people. Some of them affect the ability to produce adenosyl B12, some affect methyl B12, and some affect both. The most common category is the CblC mutations. There are quite a few of them, and they differ in the severity of their effect. CblC mutations hinder the production of both adenosyl- and methyl B12.

    I realize that it is enough of a problem just to find a way to feel better and to function, but in order to get an understanding of what is going on, it is necessary to run certain tests.
    I don't know what tests your physicians ran, but if they were not specifically the right ones, they could well all come out "normal." This unfortunately is common in ME/CFS in general, because the commonly run CBC, metabolic panel and urinalysis don't measure things that really matter in ME/CFS. (In some cases there is an elevation of the MCV and/or MCH parameters on the CBC, but they usually are still within their reference ranges.) Likewise, if serum B12 and serum folate tests are run, they will usually not show abnormalities in ME/CFS, either, unless the person has an absolute deficiency in one or the other of these nutrients. Often the serum B12 level is high in ME/CFS, because the problem is a functional deficiency in B12, not an absolute one. The cells are not able to use it properly, even though there is enough present in the body.

    Would you mind saying which tests you've had? I would be particularly interested in things like the Health Diagnostics methylation pathways panel, the Genova Diagnostics metabolic analysis profile, methylmalonate in the urine or blood, the Metametrix plasma 40 amino acids panel, the 23andme.com saliva genotyping panel, the Amy Yasko nutrigenomics panel that looks at polymorphisms in enzymes associated with the methylation cycle, or the University of Toronto testing of the intracellular B12 metabolism enzymes. I think those are the kinds of tests needed to sort out what is going on. I realize that all of them cost money, which can be scarce, and there is no guarantee that having a more specific understanding of what is going on will lead to a more helpful treatment than you have found already, but it could. I think it would enable us to identify others who have a similar issue, though, and possibly steer them toward better treatment.

    Thanks again.

    Best regards,

    Rich
  7. dannybex

    dannybex Senior Member

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    Hi Idie,

    Thanks so much for posting here, I really appreciate it. I can relate to parts of your story.

    I'm wondering if perhaps the reason you need so much b12...and need it frequently...is simply because your deficiency was misdiagnosed for so long, and as you say, the damage had already been done? 10 YEARS is a long time. And in Freddd's case, I guess it was even longer...like 30 years or so? So maybe that alone negates any possibility of 'repair' of your methylation function? Just guessing.

    Also, when you say your tests came back 'normal', do you mean with the ranges their labs (or your docs) accepted as normal? Did they ever run an MMA test?

    Thanks,

    Dan
  8. dannybex

    dannybex Senior Member

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    WHAT? Okay...Xchoco...what's pene stand for? :)

    I seem to be tolerating mb12 better (and who knows, maybe need more like Idie?), but I too have the same problem with p5p. I've read on other sites that b6 may work better if one can't tolerate p5p, but it must be taken with equal amounts of magnesium. I haven't tried that yet, but did get some debittered brewer's yeast -- full of natural b vits -- and seem to be tolerating small amounts so far.

    Have also read the b2 (riboflavin) helps with b6 issues, like the tingling that some get with any amount of b6/p5p.

    ???
  9. L'engle

    L'engle moderate ME

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    Hi,

    I'm also on Freddd's protocol, taking 45mg of Methyl B12 a day in the morning, sublingual. I didn't get a significant start-up response until I started taking 20mg + at one time. I get a twitching reaction every time I increase the amount above this level, on the first day at the new level, which subsides. I skipped a day once and really noticed it by the next morning when I had gone nearly 24 hours without methyl 12. So it is helping some at the level I am taking, which I gather is just below the level that one gets from an 7mg(?) injection. I may need more but am being cautious about increasing the level beyond 50mg/day for now. It is nice to be able to do some things again.
  10. xchocoholic

    xchocoholic Senior Member

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    hi danny,

    This isn't quite what I was looking for but this explains PENE ..

    http://forums.phoenixrising.me/show...chologist-on-International-Consensus-Criteria

    I don't get any tingling with B12 or P5P. I just hyped up so that I can't sleep at all. I had to take 9 mg of melatonin + 300 mg Theanine + 300 mg of 5HTP in order to sleep at all. And then I felt out of it the whole the next day ... I used P5P, MB12 and ADB12 to help me move recently. It worked to keep me going but I was a zombie mentally.

    I started experimenting with B6 about a week ago. I'd read that taking magnesium citrate with it would help those with an oxalate problem detox from oxalates. This info was on the tryinglowoxalate board ... So far the B6 is giving me more energy but I'm still getting tired, OI and PENE ...

    A little off topic maybe but, my labs keep showing that my esonophils (sp?) are high as are my thyroid antibodies. My doc commented that my esonophils were the highest she'd ever seen in someone upright ... lol ... I'm assuming this is a normal ME symptom too. I know allergies are common in dysautonomia. I can't imagine ever feeling good as long as these are out of control.

    tc ... x
  11. xchocoholic

    xchocoholic Senior Member

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    thanks .. I'll have to try the hydroxycobalamin ...

    FWIW .. I didn't have any symptoms return when I stopped taking these. I do get symptoms if I eat any toxins though. hmmm ...
  12. Idie

    Idie

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    The only thing that helped my sleep was consistent dosing of B12. I could not sleep. I am not exaggerating when I say that I was lucky to get an hour or two a night. 6 weeks after starting with 15,000 mcg of B12 and I was finally able to sleep for several hours. It was a huge relief.

    When I don't get enough B12 my sleep diminishes fast.
  13. Idie

    Idie

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    I have not changed anything. Still taking 800 mug of folate. I tried taking more and it made me very dizzy so I dropped back.
  14. Idie

    Idie

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    Rich

    In 1947 my Grandfather got very ill and was nearly bedridden. The country doctor began B12 injections and in three months he was back working the farm. Family members who remember the situation describe his recovery as miraculous. I suspect I have inherited something.

    I had several blood panels, scans and procedures. I have not had all the unique tests you talk about here. Those ten folks I describe all had B 12 levels below 580 and all have been on the protocol AND all get symptoms back when they lower dosing. All have been on the protocol longer than 6 months. One of these individuals had over $80,000 in tests and was just like me. His doctors had no idea what was wrong. With no options left, he started the protocol last March. Six weeks later he started feeling much better. When he saw his doctor and told him what he was doing, his doctor said keep it up because it is obviously working.
  15. dannybex

    dannybex Senior Member

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    Hi Idie,

    Another couple of questions:

    You said you had tingling/buzzing in your hands and shoulder, and couldn't sleep. I'm curious if you had any other symptoms, like for example, weight loss (like Freddd)? Or anxiety, racing/overactive mind -- that excessively 'wired but tired' thing?

    Also you said you had 'significant startup' reactions after starting the b12 injections. "Startup" means many things to different folks here, especially in this context, so I'm wondering if you could describe what you mean -- did your tingling turn into outright numbness, your buzzing turn to tremors(?) -- and how many days/weeks did this last before it calmed down?

    THANKS IN ADVANCE IDIE,

    Dan
  16. biophile

    biophile Places I'd rather be.

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    Is methylfolate needed when one has COMT and MAO-A SNPs?

    There are many people trying the methylation protocol, but with much variation in reactions to the components of it. Freddd seems able to tolerate huge amounts of methylfolate in the dozens of milligrams per day range whereas others cannot even handle 0.1mg. I am sensitive to methylfolate but am able to tolerate 0.2mg recommended by richvank. I was planning on increasing it but after 3 months I am beginning to question again whether I even need any at all and wondering if it is causing long term problems. Several years ago I had a bad experience with 200mg SAMe which may suggest a block somewhere in the methylation cycle and/or an overdriven cycle causing issues elsewhere and/or I already have too many methyl donors. Some people swear by potassium to handle effects of methylfolate, but I suspect I have the opposite reaction with potassium. There is talk of cofactors blocking healing etc but frankly I can't handle them at the doses suggested.

    This year I did the 23andMe SNP testing, and I have been since been trying to understand the methylation cycle via Google and PubMed and Wikipedia and SNPedia, but according to this website (http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl Cycle.htm), I have a moderate MTR upregulation (+/-) and severe MTRR downregulation (+/+): "This combination produces a double whammy on methyl-B12. You cant make it well because MTRR is not functioning well, and any B12 that you do make gets sucked up by the overactive MTR. Here the need to supplement with B12 is greatest."

    However, richvank has stated: Note that I have specified hydroxocobalamin rather than methylcobalamin as the main supplemental form of vitamin B12. Ive done this to accommodate patients who may have downregulating polymorphisms in their COMT (catechol-O-methyltransferase) enzyme, which many CFS patients seem to have. If they do not have these polymorphisms, methylcobalamin would be more effective, but in this simplified treatment, the patients polymorphisms will not be known. I am also including a small amount of SAMe, which is also a compromise, since the amount needed will again depend on COMT polymorphisms, which will not be known for this simplified treatment. The amount of B12 specified is also a compromise, since those with certain polymorphisms will benefit from a higher dosage than will those without them. (http://aboutmecfs.org.violet.arvixe.com/Trt/TrtGSHMethISimple.aspx)

    Out of the 4 COMT SNP mentioned by Dr Yasko, I am (+/+) for 2 (rs4633 H62H + rs4680 V158M), the rs769224 P199P is (-/-) and data for rs4818 L136L is missing. Do people with these SNPs really need methylfolate? My supposed COMT downregulations indicate need for hydroxy-B12 over methyl-B12 but my supposed MTR upregulation and MTRR downregulation would indicate increased need for B12, methyl-B12 in particular. I am considering focus on B12, dropping methylfolate and just continuing the hydroxy-B12 and methyl-B12 (and maybe adenosyl-B12 later on). I still don't know for sure if folinic acid is good or bad for me, it doesn't seem to cause obvious problems. Below is my SNP data, only including the ones which had data available and were not (-/-) according to Dr Yasko:

    (CBS) rs1801181 [A360A +T/-C]: AA=TT | (+/+)
    (COMT) rs4633 [H62H +T/-C]: TT | (+/+)
    (COMT) rs4680 [V158M +A/-G]: AA | (+/+)
    (MAO A) rs6323 [R297R +T/-G ]: T | (+)
    (MTHFR) rs1801131 [E429A A1298C +C/-A]: GT=CA | (+/-)
    (MTHFR 03) rs2066470 [P39P +T/-C]: AG=TC | (+/-)
    (MTR) rs1805087 [A919G A2756G +G/-A]: AG | (-/+)
    (MTRR) rs1801394 [A919G (A66G) +G/-A]: GG | (+/+)
    (VDR) rs1544410 [Bsm/Taq +A/-G]: TT=AA | (+/+)
    (ACAT1-02) rs3741049 [N/A +T/-C]: AG=TC | (+/-)
    (SHMT) rs1979277 [C1420T +A/-G]: AG | (+/-)

    As richvank has said before, these only suggest tendencies. I tried finding information on CBS rs1801181 A360A but it seems conflicted. I have tested slightly high in homocysteine in the past but another test was normal. MAO-A (+) probably worsens COMT (+/+) status? 2 x MTHFR (+/-) may suggest reduced ability to make methylfolate, but would COMT downregulation negate this? I'm still unclear on the degree of effect that VDR Bsm/Taq (+/+) would have on the above. I still haven't looked into ACAT1 and SHMT yet. The science for all this is complex and not properly established. I haven't reached the stage where I want to spend $500 doing the tests, at least not yet.
  17. richvank

    richvank Senior Member

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    Hi, xchoc.

    High eosinophils can be caused by allergy, but also by helminths (worms). If you haven't had a stool test for helminths recently, you might want to consider it. Dr. Omar Amin's lab in Arizona has a pretty good reputation for looking for parasites.

    Best regards,

    Rich
  18. xchocoholic

    xchocoholic Senior Member

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    Thanks Rich,

    I just re-tested a couple of months ago so I'm good. I showed gluten antibodies on my stool test while on the GF diet so my doctor thinks I'm probably getting gluten from somewhere. Not to mention that I tested positive to most of the common allergens on a skin prick test I had a while back and I react to a variety of foods and chemicals. My labs show that I have leaky gut ...

    I responded to this thread because although I'm very happy for this person, I don't think this person had ME/CFS. I didn't see this person say that they did either ...

    If you look at the ICC definition of ME and symptoms relieved via Freddds protocal, this person doesn't fit the criteria. And we know that the previous definition of CFS was inaccurate.

    Dr. Myhill has done a lot of research on ME/CFS patients and from what I've seen, she covers the symptoms that most of us have. I'm a newbie to medical research but even I know that food intolerances and chronic hypoglycemia are just two examples of symptoms that can't be cured by B12, etc ...

    And ...

    I started this thread on sleep supplements and how our bodies sleep because I don't understand how anyone can take B12, etc and cure their insomnia. It just doesn't fit into anything I've read by several sources about how our bodies sleep. I'm a newbie though so maybe I'm missing something. Which means all those sources I read were missing it too ...

    http://forums.phoenixrising.me/show...ment-that-work-for-us-...&p=205046#post205046

    Like I said, I'm a newbie but this just isn't adding up for me ... tc ... x

    PS. I was thinking too that based on the fragile state of my body and that of several others here, I'm not sure trying to increase our energy levels is such a good idea or even possible. FWIW. I've reduced quite a few of my symptoms as have others but it appears that there will be some damage that can't be reversed ...

    According to my recent CAT scan, I have lung scarring now. And recently having my first 2 hour seizure where my lungs shut down sporadically was enough to convince me that I need my rest ... Lots to think about .. x
  19. Rockt

    Rockt Senior Member

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    Idie, how much would you say you have improved? Were you debilitated to start with or quite functional? Just trying to guage what kind of improvement is possible. Freddd feels he is pretty much 100%, I think, but I haven't heard anyone else claim to be anywhere near as well from this protocol. Any input you can provide is appreciated.
  20. Idie

    Idie

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    Dear Dannybex,

    Sorry for my late reply, I have been traveling. Start up for me was that all my symptoms intensified and new ones emerged. I went from tingling in all extremities to internal tremors that would shake you to the core. The tremors were so strong they would wake me up. The dizziness got much worse and I felt extremely weak--my legs felt like jello. The good thing is that all of this went away in about 3-6 weeks. I also had a number of reversals. I got better then worse then better and then improvement became permanent. It is scary to have all of this weirdness but once I realized that this was part of healing, I could handle it better. I did not have pain persay just very strange symptoms. Those are all gone now.

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