1. Patients launch $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!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Do I even have a methylation issue? Weird Reactions, please help.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by lampkld2, Feb 22, 2011.

  1. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    TLDR?: Labs and summary of case at bottom
    Hello,

    I am a college student, with CFS like symptoms all my life: Anxiety, fatigue which is bad but not debilitating, I can still go to school, poor muscle tone, subclinical hypothyroid, tight muscles/ slight kyphosis, intermittent brain fog, space cadet syndrome/ ADDI, anhedonia and lack of motivation, sore for a long time after weightlifting and can't gain muscle, poor self esteem and sensitive . Spatial, executive functioning and fine motor issues, PFC problems and cognitive dysfunction.

    This all has been tough, especially trying to live up to the guy "masculine" stereotype and pursing (or trying to) my many interests.

    Anyway, I have had these symptoms as long as i can remember, I did get really bad ear infections and through infections as a kid all the time. Now I have a chronic swollen lymph node on my right side, lowish white count (3.4-4) and occasional ear, burning head pain along with sore throats and the occasional flu like symptoms. I do not have candida, but do have chronic h. pylori and the usual mildish gut issues.

    Was diagnosed with mild pylouria, zinc deficency, elevated copper/ ceruloplasmin and undermethylation by pfiefer ( based on histamine was 70-90).

    The B6 gave me neuropathy, even in doses of no more than 200, so I stopped. My serum B6 remained elevated for a long time after that.

    I tried some SAMe and MB12, both made me possibly feel spacy. Serum B12 and folic acid are normal, B12 remaining really high after mild MB12 supplementation like the B6. Homocystine was around 10.5 and I got a urine organic acid if anyone wants to see.

    I want to try the methylation protocols but I am afraid due to my bad reaction, and the fact that nothing was super out of reference range on organic acid that I am acutally overmethylating/ eumethylating or that I will methylate mercury into my brain if that is the reason for my brain fog from the SAMe.

    Magnesium is the only supplement that has helped for sure, my anxiety is WAY better. Zinc possibly helped, but I stopped it because I was afraid it would displace or chelate mercury. Urine metals undecetable, but I have not gotten hair yet. Also I think I might have mortons toe.


    What should I do? Please Help

    History and chief complaint(s)
    21 y/o male
    Fatigue, brainfog, cognitive dysfunction, muscle atrophy and poor work capacity, spatial and fine motor dysfunction, intermittant brainfog, high latent inhibition, executive dysfunction, tight muscles. No known onset, symptoms persistant.
    Scalp infllammation, GI upset, slow motility. Nausea.

    Histroy of childhood ENT infections. Persistant large right lymph node.

    Brainfog from SAMe and MB12. Anxiety improved with Magnesium. Zinc helps slightly. B6 200 mg induced parastesia.

    Summary of Labs
    H. Pylori
    Pancreatic Enzyme reduction.
    Elevated Gluten Antibodies
    Gut Inflammation
    White count : 3.4-4
    MCV: 89 (80-100)
    B12 No supp: 800
    Zinc: 67 (60-130)
    Copper: 84 (70-175)
    Plasma B6 month after stopping : 24 (2.1-21.7)
    Urine Pyrrole : 14
    Histamine: 78
    Zinc protoporphyrin: 24 mics/dl ( this is 4 years old)
    Fasting homocystine: 10.3

    OAT: Nothing really in the middle of the ref range, but nothing totally out of whack either. Can Email this.
    - methylmalonate was pretty low
    23andme genetic test for SNPs enroute.

    Can provide sprectracell test results, but they are 3.5 years old.

    THANKs!!!!!!!!!
  2. Emootje

    Emootje Senior Member

    Messages:
    280
    Likes:
    95
    The Netherlands
    I can't help you with your methylation question but I'm very curious about the zinc protoporphyrin (zpp) reference range because I'm trying to check if zinc protoporphyrin can serve as an inflammatory marker in ME/CFS.
    Could you give me your labs zpp reference range?
  3. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    THanks for your reply.

    The reference range for my lab was sort of complicated.

    It gives a general reference of <41 mic/dl

    Then for <15 yo it says: "<41 at HCT 35%"

    For over >15 yo: " <41 at HCT of 42%"

    Guess it depends on crit? but it looks like 41 is the general number.

    Are we supposed to have any at all? whats the optimal range?
  4. Emootje

    Emootje Senior Member

    Messages:
    280
    Likes:
    95
    The Netherlands
    Thanks lampkld2!

    The reference range I know:
    • 0,27 - 1,23 mol/l
    • 0-60 mol/mol Hb
    • < 0,22 mmol ZPP / mol Hb

    I guess your ZPP is normal

    Thanks again
  5. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Hi Lampkld,

    At your b12 serum level you could even have all 4 kinds of b12 deficiencies, cns-adb12, cns-mb12, body-adb12 and body-mb12.

    The "spacey" response to mb12 is a quite normal startup response. It is a GOOD response, it demonstrates that mb12 is getting to your nerves. To really give it a chance you need all the basics, mb12 sublinguals of one of the two 5 star brands and adb12 of the 5 star brand as well as Metafolin of any brand. Then the sublinguals need to be allowed to linger for as much as 2 hours to get their full effectiveness. Many people with CFS/FMS symptoms have a CSF/CNS cobalamin deficiency no matter what their serum levels are. Read http://forums.wrongdiagnosis.com/showthread.php?t=62327 and then let's discuss this. Make a list of all your symptoms that are on the list of symptoms there including minor or seemingly unconnected ones you may have been ignoring. That will tell you a lot. It will give us a basis for discussion.
  6. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    Freddd,

    Thank you SO much for your response and for everything you are doing to help the CFS community, I really Appreciate it.

    I am very happy that there may be so hope for this, and I am eager to get started, especially as i write my literature review that is due friday... haha

    I took a look at the articles, and here are my symptoms from the list, with some comments:

    mouth sensitive to hot and cold
    teeth sensitive to hot and cold
    canker sores
    accumulating muscle pains following exertion- (DOMS for a long time after working out)
    sore muscles
    lack of muscle recovery after exercise
    exercise does not build muscle
    extremely sore neck muscles reversing normal curvature of neck - Not sore but very tight. Also have EDS
    exercise deblitates for up to a week, making things much worse- not much worse, sworse and bad recovery
    painfully tight muscles, especially legs and/or arms- tight leg muscles
    frequent muscle spasms anywhere in body-( Before magnesium, now less cramps)
    muscle pain especially around attachment points to bones- (Tender)
    Eighteen severely tender muscle spots of FMS - (Not all of them and not "servere")
    dyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying
    flatulence
    altered bowel habits
    intermittent constipation
    Celiac disease (direction of causality if any not established) - gluten sensitivity
    reduced libido - loss of sexual desire
    unable to become aroused
    reduced testosterone
    heart palpitations- (occasional)
    weak pulse- Low BP
    Hypothyroid (direction of causality if any not established) (Subclinical, high RT3 and symptoms)
    High homocysteine- (10.5, is this high?)
    dizziness - even unable to walk- (orthostatic dizziness sometimes)
    irritable
    depression
    mental slowing
    chronic malaise
    poor concentration
    moodiness
    tiredness
    mood swings
    memory loss
    listlessness
    impaired connection to others
    mentally fuzzy, foggy, brainfog
    paranoia
    deja vu experiences
    anxiety or tension
    nervousness
    mania
    impaired executive function
    cognitive impairment
    memory impairment
    Hypersensitivity to clothing texture
    Hypersensitivity to body malfunctions, symtoms
    Hypersensitivity to internal metabolic changes
    Hypersensitivity to temperature changes
    mild to extremely severe fatigue
    easy fatiguability
    weakness
    sleep disorders
    non restorative sleep
    Night terrors
    tinnitus - ringing in ears
    always feeling cold
    clumsiness
    impaired white blood cell response
    poor resistance to infections
    MCV > 92-94 first warning, MCV > 97-100 alert- 89
    platelet dysfunction, low count (158 on a ref range of 140-400)
    white cell changes, low count
    headaches
    frequent infected follicles
    Seborrheic dermatitis
    dandruff
    Seizures-Possible bipolar 2/ temporal lobe siezures.

    Attatched is my organic acid test.

    Thanks Again.

    Lamp

    EDIT:

    Took 50 mg zinc for and some Mn for low serum zinc and KPU. Got some sock and glove pattern tingling shortly after, persisting into today along with very mild muscle twitching perhaps?

    . May be from my back issues, but not sure?

    Don't think it could be low copper after one dose, my zinc being so low and my copper not being low to begin with. Maybe mercury? maybe its in my head from before?

    Attached Files:

  7. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Hi lampkid2,


    What literature review?

    Your symptoms indicate both mb12 and adb12, and body and CNS deficiency patterns, all 4 deficiencies plus highly likely Metafolin deficiency too.
  8. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    So i got my 23 and me back.

    I am COMT++ mearning I need to avoid methyl donors, and take methyl trappers and MTHFR -- meaning i need to take methyfolate.

    So it seems like I'm screwed....or maybe there is a way to balance the two.

    now i'm scared to take MB12, and now I know why the SAMe sucked, either It was building up homocystine, or it was adding too many methyl donors.

    Any suggestions? pleasse
  9. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Hi Lampkid2,

    I would be inclined to ask you why you want to go with the hypothesis that won't let you heal? You show all the signs of having specifically methylb12 and methylfolate deficiency, or methyl block as RichVank puts it, or "depleted methylator" as I termed it almost 8 years ago. Mb12 will most likely start relieving most of your symptoms very quickly which will result in a sizable startup effect. You can break that up into four segments. To begin with start with a B-right once a day and in a few days go up to twice a day and continue. For the next few day take a Country Life adb12. The first day take 1/4 and keep it under you upper lip for an hour or more each time. The second day, do that once in the moring and once in the afternoon. The third day take 1/2 all at once. The forth day take 1. The fifth day add 1/4 of a Jarrow 1mg. The second day take 1/4 twice. The third day take 1/4 3 times. The forth day take 1. And feel free to speed it up or slow it down. However, going on and off mb12 appears to make the oscillations more extreme and fearful for those who are anxious. However, I have not known anybody who recovers from these things who doesn't got through these various effects at some speed or another. A lot of the things could start changing within 5-10 minutes. Now you may find that everything is awaiting methylfolate if you are very deficient on that. And again, titrating the metafolin by quarters might spread out the reaction which might already be as much as it gets to be, and certainly makes it last longer. A larger dose might make it more intense, but not in a linear fashion (more like double the dose causes 1/2 of the previous change) but lasts a fraction of the time.

    I'm getting a revised version of that list put together which will include CNS and/or BODY and ADB12 and/or MB12 and/or M Metafolin.

    Unfortunately the therapies designed for cyanocbl and hycbl are only based on about 1/3 of the symptoms covered by mb12/adb12 and do very little or nothing for them in most people. It's quite possible to have a few symptom improve at the same time as the rest go down the tubes.

    I don't know what dose of SAM-e you took but each mg of SAM-e has more methyl groups available than 1 mg of mb12. And when you take 1/4 of a 1mg mb12 you will end up absorbing about 50mcg (1/20 of a mg). That can't blow you out of the water because of methyl groups. It does so because it might, or might not start up your nervous system and/or your metabolism if the adb12, which is NOT a methyl donor, hasn't already done so.

    In another thread I posted the symptoms of "over-methylators" and of "under-methylators". They were both lists of mb12/adb12 deficiency symptoms. I had approximately equal numbers form both lists. So did the others that responded. Both lists included "depression".


    Good luck.
  10. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    I started taking some zinc to correct my zinc deficency and make it available as a cofacter before i start anything.

    Got neuropathy from it for sure.

    Can you think of any reason, short of mercury and copper issues that it would be doing that?
    Also should i stay away from country life ADB12 since it contains folic acid and I have a MTFHR snp?
  11. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Hi Lampkld2,

    Got neuropathy from it for sure.

    This is an interpretation, not a description. Zinc is not known to cause neuropathy. So what did happen? Can you describe what occurred rather than interpret it?

    lso should i stay away from country life ADB12 since it contains folic acid and I have a MTFHR snp

    In my opinion and experience, the folic acid makes no difference as long as you also have the Metafolin. I know of no other brand of adb12 that is anywhere near as effective or absorbed as well (partially the same thing).
  12. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    If you were diagnosed with zinc deficiency, then it could very well be due in part to high copper, which may explain the anxiety, hypersensitivities, irritability, etc. Copper can be biounavailable, so blood tests can be unreliable, from what I've read. But mercury toxicity may explain the symptoms, too, especially the neuropathy, , the twitching, the nervousness, low self esteem, brain fog, thyroid problems, always feeling cold, and the methylation problems.

    From what I understand, mercury and copper can be kind of synergistic -- so mercury -- and copper toxicities -- may, emphasize MAY -- be causing the low zinc levels too.

    I'm speaking from experience...had a severe increase in anxiety, twitching and tingling symptoms after methylation supps were overprescribed back in October, causing mercury to be 'dumped' from the liver, and still have problems with most of the b's, but especially b12, b6 and the active folates. Some people can handle these, even if they start out slowly, but Rich Van Konynenburg has said that those with heavy metal burdens may have to address this first -- before starting any methylation protocol.

    You might consider getting a DDI Hair Elements Test -- considered by many to be the most accurate measure of heavy metal problems.

    Hope this helps,

    Dan
  13. lampkld2

    lampkld2

    Messages:
    65
    Likes:
    3
    Hi Freddd and dannybex, thanks for your replys.

    I got some glove and sock pattern tingling.

    In a fit of impulsivity and frustration I took a quarter tablet of MB12 and ADB12 along with 400 mcg of methylfolate and 1mg of copper.

    Felt spacey then actually had a pretty decent day, faituge and anxiety was alot better. Cognitively maybe also better. And the tingling got way better also.

    Today took half a tablet each along with 800mcg MB12, I have a headache now, don't feel as good as I did friday.

    SO either I am dumping heavy metals, or this is a startup reaction and the zinc started some kind of healing or caused some kind of deficency that the B12 helped.

    It was weird, I tried some DMSA chelation with up to 200mg of zinc last week, and I did not get the neuropathy untill I started 50 mg of zinc off the DMSA.

    Either the DMSA was keeping the mercury in check or it was chelating the zinc and i wasn't getting any and its not a mercury issue.

    I stopped the DMSA because I am sulfur sensitive...It was making me depressed, so maybe it was chelating mercury? or maybe it was a sulfur issue. ugh I don't know.

    Part of cutler's protocol calls for lots of zinc, so I thought I was going by the book.

    I guess the safest thing to do would be to stop for now and get hair tested?

    BTW:

    this has happened before when I took zinc and b6. Thought it was MS so I got a EMG and they found no neuropathy.... it was mostly resolved by the time I had the test, with some residual symptoms. I guess that would mean this is not a healing issue because they found no baseline nerve damage? not sure how sensitive that test is.
  14. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Hi Lampkld2


    I got some glove and sock pattern tingling



    I would be inclined to say "a haracteristic of b12 deficiency" rather than call it "conversion disorder" from 60 years before b12 was discovered and Freud was up and coming.


    Felt spacey then actually had a pretty decent day, faituge and anxiety was alot better. Cognitively maybe also better. And the tingling got way better also.

    Today took half a tablet each along with 800mcg MB12, I have a headache now, don't feel as good as I did friday.

    SO either I am dumping heavy metals, or this is a startup reaction and the zinc started some kind of healing or caused some kind of deficency that the B12 helped.


    I would be inclined to agree with the quote in red. The headache can come from increased nerve activity in damaged and/or deficient nerves and/or deficient muscles.


    I guess the safest thing to do would be to stop for now and get hair tested?



    Safest for what, staying sick? In my experience with people who substantially recover, keep going on the mb12, adb12, metafolin and the cofactors. If you won't give your body what it needs to heal, it won't heal. It doesn't just get better all at once. It takes a lot of steps and it isn't until the last step that something is healed. All the rest of the steps are just different ways for it to feel wrong. I have seen absolutely nothing at all convincing that any hair testing results should be used to not take the active b12s. If you take them some things will be healing in less than 10 days. The real danger is potassium rapidly going out of serum when you start to heal. That is of far more danger to you than anything the hair test might be interpreted to say and that can start in 3 days.
  15. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    Come on Freddd -- you know full well that 'stock and glove' neuropathy can also be caused by heavy metals, and many other things besides b12 deficiencies. And you know that many people have gotten a lot worse over time by taking b12 and folates, and have been unable to continue it until they dealt with mercury or other issues. Rich Van Konynenburg has also mentioned this many times.

    If he has issues with sulfur and b6, that could suggest that he may have a serious mercury toxicity issue.

    Having said that, if he got better, and the tingling got 'way' better, then perhaps it very well may be due to b12 deficiency. But I should point out that I too felt 'better' in the very beginning, for a few days, after taking some of the b12's and folates, a long time ago, but as I continued, I got worse and worse and worse, until I was very close to suicide several times. VERY close.

    So perhaps -- just perhaps -- getting the hair elements test from the lab that Cutler recommends -- may indeed be the safest thing to do. After all, it would only take a couple of weeks to find out the results, and then it shows that his minerals aren't skewed or deranged (by mercury) then he'll be able to get right back to your protocol if he so chooses.

    Just my two cents!

    d.
  16. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City

    Hi Danny,

    I'll address the things you say. I will assume you want to discuss this based on a more or less scientific basis rather than magical. If I am wrong on that, let me know and I will address it from the other direction.

    you know full well that 'stock and glove' neuropathy can also be caused by heavy metals, and many other things besides b12 deficiencies.

    The best I can give you is a "maybe" on that. Let's consider that many if not most neuropathies are called "idiopathic" in those who are not diabetic. SO that points the way towards one other frequent apparent cause, I say "apparent" as mb12 can heal "diabetic" neuropathies along with other suitable cofactors. Also, let's consider that most docs will not recognize b12 deficiency casued neuropathies if the serum level is over 170pg/ml or so despite studies finding mb12 responsive neuroptathies are present at over 1500pg/ml so they won't be recognized 90% or more of the time. As about half of Americans appear to have mb12/adb12 responsive symptoms despite being above 170pg/ml and with MCV < 100 it would be very difficult to say whether the lack of sufficient mb12 is a contributing or enabling cause of "diabetic" neuropathies. As many of those take place because of spinal cord degeneration (subacute combined degeneration if from b12 deficiency) and they respond very well specifically to intrathecal mb12 in studies, I would be inclined to group them into the mb12 deficiency neuropthies,, same as most of the "idiopathic" neuropathies. As 80% of mercury toxicity symptoms are ALSO mb12 deficiency symptoms, and mercury does deactivate mb12 by taking the methyl group, and 2 mg of mercury can theoretically disable all the mb112 in a body and all the mb12 likely to enter a body for 10 years or so during the normal course of eating, it would not be at all surprising if the cause of "mercury" caused neuropathies are actually an indirectly caused mb12 deficiency. Mercury caused neuropathies appear to respond to mb12, but that is hard to pin down because it isn't being directly addressed in research. In fact toxic damage to nerves is often prevented by mb12 in the first place and regardless of chemical or mechanical cause of damage, mb12 helps the nerves heal.

    Rich Van Konynenburg has also mentioned this many times.


    Rich has mentioned the same report of the same two people who had a "suspected" neurotoxic methylmercury response to "large" IV doses of methylb12 many times. It doesn't make it any less rare. It isn't proven but let's look at the numbers research and case histories have shown us. I built a model taking the various factors into account. So let's say that these two persons had a "large" IV dose of mb12. The only known purpose for that is to save somebody's life from cyanide poisoning and that dose is repeated IV doses of 35 grams, or 35,000 mg, or 35,000,000 mcg. Other research has shown that doses of 1mg or more is excreted 99% unchanged within 24 hours. It takes 7mg (approx) of methylb12 to methylate 1mg of mercury if 100% of the mb12 is so utilized, which never happens. From other research the beginning of methylmercury neurotoxic toxic reaction is about 35mg of methylmercury in the body. The serim halflife of methylmercury in the body is about 71 days, from other research. At 1% of the methylb12 being used to methylate the mercury 700mg of IV mb12 might conceivably methylate 1mg of mercury. To get to a neurotoxic body load of 35mg of methylmercury would require at a 1% of mb12 utilization rate would require 35x700mg = 24.5 grams of IV mb12. So a 5mg Jarrow absorbed at an average of 20% would get 1mg into serum, which would methylate about 1.43mcg which is 1/24,500 of the amount needed to produce neurotoxic effects. Even if you move the utilization of mb12 by methylating mercury up to 10% of mb12, that is still less than 1 part in 2,450 of what is needed to produce a nerotoxic result. In other words, a toxic amount of methylmercury is not at all likely to be released because of 1mg of mb12 a day. To attribute 1mg of mb12 with the same methylating capacity of 3.5 grams of mb12 or 35 grams of mb12 is magical thinking. So how is a persons safety impaired by giving them the one thing that may actually heal the problem at a level of 0.04% or 0.0004% of the amount that would actually have the potential to actually cause the event if it can actually happen at all, as these were just "suspected", not proven, cases.

    And you might say, "Well, two weeks won't make any difference". In healing subacute combined degeneration, it is said that if the treatment isn't started within 2 weeks of first appearance of symptoms, they are more likely to be permanent damage. As far as whether any of his neuropathy is central or all peripheral is impossible to tell from these symptoms alone and in many neuropathy cases there is a mix of central and peripheral nerve damage. I have very resistant to heal neuropathic problems because of years of delay. On some specific day, each little piece of that damage became apparently permanent. Each delay can cause an increase in permanent damage.

    But I should point out that I too felt 'better' in the very beginning, for a few days, after taking some of the b12's and folates, a long time ago, but as I continued, I got worse and worse and worse, until I was very close to suicide several times. VERY close.

    It's an interesting phenomena, the increase of suicidal ideation and attempts, when something with anti-depressant qualities is taken and is just starting to work. It can appear with SSRIs and other things that relieves various causes of depression such as mb12, adb12, SAM-e and Meafolin.

    Having been there I have my own ideas about it's cause, which even if I were to express them, would not constitute a complete understanding. During the decades of b12/folate deficiencies depression, after the b12 crash, I had more than 10 years where I woke up in tears every morning wishing I were dead. Also, I had a couple of dozen NDE experiences during that period including 6 or 7 in one truly awful night.

    Whether the strong intensification of symptoms from mb12 and cofactors, in the beginning, is a factor in such suicidal ideation or not, I couldn't tell you. An increase in misery could certainly be a contributing factor. However, the antidepressant onset link with increased suicide ideation is a major contributor I suspect in this.

    Some people respond with fear and anxiety to their nervous system starting to come back on line very imperfectly at first and some respond with suicide ideation. Why that would be I couldn't tell you. For me having to deal with 20 years of unprocessed emotional traumas all at once and seeing quite clearly what a total disaster my life had become because of a non-functional nervous system might have been a factor. It certainly made it appear that death was the far easier choice. I ended up divorced a year after starting mb12. I had already lost the bulk of my middle age, my ability to do anything physical, my business, my memory, my cognitive function, my ability to read (unable to focus eyes), my normal emotions, my former personality, my children's years of growing up and everything else in life that meant anything at all to me.

    Edited to add:

    I found I had to go through a period of mourning for myself, the things that had been and the things that could never be again. This deficiency and the lack of understanding of it's effective treatment cost me everything. Now 8 years into recovery I am beginning to plan for a future since the old one was taken away from me. I'm even putting together a bucket list now, having given up on everything from before. My future isn't what it used to be and I've had to accept that. There is no going back.



    And you know that many people have gotten a lot worse over time by taking b12 and folates

    And I know very well that many people have had actually far worsened b12 and folate deficiency symptoms by taking hydroxycbl, cyanocbl, folinic acid and folic acid, me included. The good news is that these can be healed with adb12/mb12/Metafolin even though they make the startup responses even worse than having not taken inactive vitamers. I also know that many people have a perception of intensified symptoms after starting mb12/adb12/mfolate which might be interpreted as "worse" symptoms even though these heal after a while, the ones being stirred up the most usually being what heals fastest.
  17. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    Hi Freddd

    I'm sorry Freddd, I didn't mean to come off as rude or too blunt in my post above, and I apologize if I did.

    It's just that we've talked about this before. While I know you've based your protocol on a lot of research and studies, a lot it and a lot of the results are based on your personal experience coming from a 'coma-like' state, whereas a lot of us -- or at least some of us here are coming from a 'wired but tired' state. Two completely different circumstances. Well, maybe not 'completely'. :)

    We're all different...and those differences need to be taken into account when discussing certain reactions. Certainly no one can state that we'll all react the same way one particular person does -- we all have different factors that went into our becoming sick.

    Neuropathies are associated with thiamine, vitamin b-6, vitamin d, copper deficiencies, and heavy metals*, among other possibilities. Some people paradoxically can't handle ANY supplemental b-6 because of sulfation issues.

    * http://www.ncbi.nlm.nih.gov/pubmed/9875628

    * http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2923418/

    And when I talked about Rich's mention of heavy metal issues, I was referring to his reminder in many of his posts -- none of which I can find right now of course! -- that in some cases, certain issues like heavy metals need to be dealt with before the methylation protocol is started.

    I very much appreciate your openness regarding the anxieties, and related 'mourning' and grieving that one often needs to come to terms with after being sick for so long -- for the lost years -- the lost identity, etc. Believe me Freddd, I can relate to that very much -- I think that's very true. In the last few months I've realized that and have been going through a lot of that myself, and believe it's a very important part of the process in healing. Holding that in can only make the anxiety worse.

    I'm not trying to argue with you or anyone. I just want to point out the fact that some people can handle the b12 and folates (and you make good points about the different aspects of specific types of both supplements), while others simply cannot.

    As mentioned earlier, many of them are coming from an already overstimulated, "wired but tired" state (which MAY be a result of either mercury or copper toxicity btw) and need to go very slowly -- with fractions of the doses you took and/or are taking -- in order to tolerate them.

    Anyway, I very much appreciate your passion, your work, and your input.

    Take care,

    Dan
  18. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    Hi again Freddd,

    I've had the computer off all day today, and had some time to clear my foggy, foggy brain, and now can see and hopefully understand a little bit better what you're talking about here.

    I realized last night, that perhaps part of my 'crash' was due mainly to the excessive folates that were prescribed (four different brands, with only one of them being a dose of 1/4 tab), and the 2 b12's were the country life dibencozide (ADb12?), and hydroxyb12 drops from Yasko. (I chose the drops rather than the sublingual because whenever I have to hold something in my mouth for too long -- which I know is part of your protocol -- my salivary glands just ache and sometimes sting like crazy. Not enough amylase in my saliva?)

    Anyway, I didn't take any methyl-b12 this past fall during the methylation ramp-up so I can't blame it on that, unless perhaps some of the hydroxy was converted, but still, now I'm starting to have doubts about that as well. Plus, I've been off of the b12's and the folates (with the exception of a trial of a b-complex with results that don't seem to be positive), yet I STILL have very severe anxiety, plus muscle twitching in my feet, which I've had off and on for years, but 'on' for the last couple of months, and then this light neuropathy that also comes and goes, but has been more persistent.

    So, I guess I'm trying to say -- perhaps in my case -- that a trial of methyl-b12 might actually be worth considering. I'm not sure how I would do it considering the salivary gland issue, and would certainly want to be very cautious about it. But my symptoms -- at least the severe anxiety hasn't gotten much better at all, and it's been four months now, so that can't be from excess b12 or folates anymore, can it?

    Plus, your description of how much mb12 would be required to methylate a certain amount of mercury also jives with what Andrew Cutler says. (And I'm not mentioning him (again) because I think he's right and everyone else is wrong, but because he studied heavy metal issues for years, and recovered from merc poisoning using ALA, getting his PhD in the process.)
    I can post a link to his comments if you like, but it's also easily googled.

    Plus -- Kurt has been taking mb12 for at least six months now (along with some co-factors) and has done very well -- and he still has his fillings in his mouth. B6 was apparently also very important for him, but that seems to set me off -- definitely -- because of sulfation issues.

    But you have been able to heal, right -- even after multiple years of having extreme neuropathy in both feet? And my neuropathy/twitching has come and gone -- sometimes has gone for years (the twitching especially), so I tend to, believe it or not, tend to feel that sometimes this 'permanent' damage may not be so permanent. What say you? :)

    Don't get me started with SSRI's! Years ago my bosses insisted I see a REAL doctor and get some antidepressants, each and every one of which made me physically and mentally worse. In hindsight I think I can almost say that these past 3 months of hellish symptoms have been preferable over what I went through 12 years ago, but everyone reacts to those drugs differently. SAM-e is the one 'antidepressant' that will really pull me out of a hole, but it could be making me a little too wired now. Not sure however.

    Again, Freddd, I'm very sorry about what happened in your life, and grateful to you for the courage to express what you went through, both physically and mentally. Takes a lot of courage to go through that and come out the other side with a new life and you should be commended.

    I think that caution is still warranted, especially when you're talking to patients like myself with huge brain fog and concentration issues. Like I said above, it wasn't until after I posted last night that I realized you were kind of saying some of the same things I was -- that certain, specific b12 and folates may cause the worst of the negative reactions, whereas the adb12, the mb12 and the Metafolin specifically, may be helpful?

    Am I starting to understand you correctly?

    Thanks Freddd.
  19. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    Cutler on methylation...

    Here's a link to Cutler's comments re methylation and mercury:


    http://health.groups.yahoo.com/grou..._not_methylate_mercury_to_any_s_001216954686/

    Especially interesting are these...

    "I just came across this web site that mentions that methylcobalamin reacts directly with mercury to form a methyl mercury compound."

    Cutler: "This actually is correct. it happens rapidly in a test tube with straight methylcobablamin and mercuric chloride, both in high conccentrations. It does NOT happen at any significant rate in people at the concentrations of mercury and methylcobablmin that can be achieved before death ensues."

    and this one (which goes against most scientific claims that methylmercury is harmful to humans):

    Fish are high in mercury because they methylate it. Methylation makes it SAFER.
    But only while it stays methylated.


    If methylating suppplements methylated mercury it would be GOOD, and it would
    allow your brain to methylate the mercury there and let it come out.

    If methylating supplements actually methylated mercury in humans you wouldn't
    need to chelate, you'd just need to take a lot of B12 and folic acid and that
    would detoxify you."
  20. Freddd

    Freddd Senior Member

    Messages:
    4,539
    Likes:
    875
    Salt Lake City
    Jackpot


    Hi Dan,

    Like I said above, it wasn't until after I posted last night that I realized you were kind of saying some of the same things I was -- that certain, specific b12 and folates may cause the worst of the negative reactions, whereas the adb12, the mb12 and the Metafolin specifically, may be helpful?


    JACKPOT

    You have asked the right question at the right time. I now have most of the answer which jumped out at me when I saw your post. Thank you.

    The question that was nagging at me for the past 8 years concerned folic acid. I have done very large amounts of reading of journals and much other material about b12 and folates. Even 8 years ago there was some speculation that folic acid could block or in some other way hinder actual active folate. That was impossible to test until Metafolin became easily available. I share a genetic trait with about half the population that I can't convert folic acid to methylfolate in sufficient quantity to not be deficient. However, taking 400mcg of folic acid twice a day didn't seem to have any negative effect as long as I took sufficient Metafolin. My folate specific symptoms would recede. However I have recently performed another test which I decided I needed to do after the experience with Folinic acid. Guess what, more folic acid at the same times as the Metafolin dose with my b12 dose, taken in the form of adb12 with folic acid (Country Life Dibencozide) causes my leading edge folate deficiency symptoms to start coming back in 6-7 days. It BLOCKS the metafolin when taken at the same time (peaks coincide) from being effective. It causes folate deficiency symptoms just slightly slower than glutathione, in sufficient quantity. The Folinic acid at just 1 x 800mcg per day caused leading edge folate deficiency symptoms in 30 days. If I had taken it 3 times a day I bet it would have happened in the same 6-7 days as the folic acid. Obviously I am not going to keep taking it at that quantity and frequency until even more deficiency symptoms set in.


    To sum it up:


    1. Folic acid taken several times per day along with larger amounts of Metafolin blocks the Metafolin causing overt folate deficiency in 6-7 days.
    2. Folinic acid taken as 1 single 800mcg dose daily blocks 4800mcg of Metafolin in about 30 days sufficiently to cause overt folate deficiency symptoms.
    3. Glutathione starts causing overt folate deficiency symptoms starting within hours of a sufficient dose and is called a "detox" reaction.
    4. NAC is reported by others, to cause an identical "detox" reaction as glutathione within some unknown period, probably dependent upon dose.
    5. Hard folate deficiency symptoms are commonly called "detox" reactions.

    Folic acid and folinic acid do NOT predict Metafolin response. In fact they can cause the opposite effect in some unkown percentage of people, perhaps 50% if it is genetic.

    Cyanocbl does NOT predict Adb12 response or mb12 response and can worsen 2/3 of all b12 deficiency symptoms in perhaps 100% and worsen 100% of symptoms in perhaps 1/3 of people.

    Hydroxycbl does NOT predict Adb12 response or mb12 response and can worsen approximately 2/3 of all b12 deficiency symptoms in perhaps 100% of people and worsen approximately 100% of symptoms in perhaps 1/3 of people.

    The public health community was disappointed that folic acid flour supplementation reduced neural tube defects by only 27%. They were expecting far more effectiveness.

    Clearly the word "detox" is misapplied in identifying folate deficiency as a "detox" reaction.

    I realized last night, that perhaps part of my 'crash' was due mainly to the excessive folates that were prescribed (four different brands, with only one of them being a dose of 1/4 tab),

    Dan, I would expect that your crash was because of induced folate deficiency. You were taking sufficient folic or folinic acid to block methylfolate in your body inducing a severe folate deficiency. Further the hydroxb12 worsened many of your b12 deficiency symptoms and wouldn't work for many of the rest because of lack of methylfolate.

    We're all different...and those differences need to be taken into account when discussing certain reactions. Certainly no one can state that we'll all react the same way one particular person does -- we all have different factors that went into our becoming sick.

    I would predict that you and I are far more similar in our response to folic acid and folinic acid than either of us had any reason to think yesterday.

    yet I STILL have very severe anxiety, plus muscle twitching in my feet, which I've had off and on for years, but 'on' for the last couple of months, and then this light neuropathy that also comes and goes, but has been more persistent.

    The deficiency symptoms will last until you take methylb12 and metafolin. Reducing the adb12 to 1 or two doses of whatever size a week might help a lot, limiting the damage the folic acid can do to 24 hours a week. No wonder a once a week larger dose of adb12 worked so well for me. It limited the hours the folic acid was in my blood.

    So, I guess I'm trying to say -- perhaps in my case -- that a trial of methyl-b12 might actually be worth considering. I'm not sure how I would do it considering the salivary gland issue, and would certainly want to be very cautious about it. But my symptoms -- at least the severe anxiety hasn't gotten much better at all, and it's been four months now, so that can't be from excess b12 or folates anymore, can it?

    It never was from excess. It is induced folate deficiency and b12 deficiency from the forms that you took.

    When I first came to these forums, I wondered why so many people taking hydroxycbl and Folinic acid had such strong "detox"
    symptoms" that I said at the time looked like intensified deficiency symptoms. Now I know.

See more popular forum discussions.

Share This Page