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disheartened about feeling so unwell at 15 weeks

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by suzanne, Nov 15, 2011.

  1. suzanne

    suzanne Senior Member

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    I am at 15 weeks and keep counting, hoping that any day now I will feel better. I increased m b12 just over 2 weeks ago from 1000mcg to 1250mcg (hoping that these intense headaches and itchy skin would be cut short if i increased the dose). I had the headaches and itchy skin before i started the protocol but it is now worse. In the last day I have decided to go back to the 1000mcg of mb12 as the symtpoms had just got unbearable.

    Soeone has posted to tell me that the first 3-4 months can be the worse. have others still had bad symtpoms at this stage adn how long does it take to start to emerge, with a glimmer of feeling better.

    I am hoping i is just a matter of time, but i do have doubts creeping in. SO itchy and the headahces are really bad- even the actviated charcoal seems not to be helping now? Could it be that 2 weeks down the track from the increase in mb12, it is just too much for my body. Any thought- I am so confused about what I might expect for recovery. do i just wait another month or 2- can it really take 5 months to start feeling a bit better rather than worse? Is the reaasoning for feeling worse to do with mobilization of toxins that the body is not eliminating adeuately ? or could this be mercury being chelated?

    I am sorry to have posted so much recently . I just feel confused and am telling myself to hang in there.
  2. Valentijn

    Valentijn Activity Level: 3

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    Are you taking omega 3? That stops the headaches for me. I've never had itching from B12, but I take 40mg hydroxyB12, and a "normal" amount of methylB12 from a multi. When I did have itching, it was while I was testing for food intolerances ... foods that trigger the release of histamine from mast cells (egg whites, banana, chocolate) were what did it to me.
  3. suzanne

    suzanne Senior Member

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    I am not taking omega 3 at the moment, but I have done in the past and it did not seem to affect my headaches. i can try it again though.

    I had itchy skn and headaches before I stared 'Fredds protocol', but these symptoms are now worse- kinda intolerable. I also have sleep problems. I initially got tooth pain but at about 2-3 months that has settled in the main. I do have more energy.

    Perhaps I just need to keep going at the 1000mcg dose of mb12 and hope that it settles down eventually. I am curious as to whetehr I am mobilizing some mercury- dont know if this would be a good or bad thing. This is confusing, I just am unsure about whether I am missing smething, or if it is common to still feel bad at 15 weeks?
  4. aprilk1869

    aprilk1869 Senior Member

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  5. Red04

    Red04 Senior Member

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    Can you spell out exactly what you are taking. Supplements/Time of day/before after meals/doses, etc... This may help some of us get an idea to help.
  6. aquariusgirl

    aquariusgirl Senior Member

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    headaches could be lack of molybdenum.......or somethign else entirely
    itchiness may be related to histamine.... I think I read in amy yasko's book that you need methylation to break down histamine.. and perhaps you are increasing histamine products without having the necessary methylation capacity to deal with them. Wild guess. Rich may have a better sense of what's going on.

    I'm not sure it makes sense to "push through." Or if you do carry on, you may want to add things that take the edge off and make it tolerable..glutathione in some shape or form...maybe Moly B.

    Personally, I think if you are very sick. methylation support is not a good stand-alone option.. You may need glutathione sparing strategies like immune modulators or antivirals (Rx or alternative).
  7. dannybex

    dannybex Senior Member

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    Hi Suzanne,

    I just want to say first of all, you have no need to apologize for anything. It's definitely tough for a lot of us to figure this out -- (I've had a very difficult year myself) and there could be so many different 'causes' for your/our symptoms.

    I guess for now I would suggest maybe reducing your dose -- maybe -- maybe it is just too much for your body right now. Many have to start with just crumbs...

    Regarding the itchiness (and possibly the headaches), have you ever looked into a salicylate/phenol intolerance?

    Some fruits and vegetables are very high in sals/phenols, and one of the main symptoms is itching, especially if it's worse some days, better other days (depending on what you've eaten earlier that day or the day before, etc.). Spices are especially high in salicylates, as are dried fruits, most nuts, olive oil, and honey -- they're also present in artificial colors and flavors.

    I'm pretty certain that's one of my main dietary issues, for years now, but because it's more talked about in the autism community, and less so in adults, I guess even I didn't take it very seriously until now. But I had to restrict my diet last week in prep for a colonoscopy, and stop eating all together for one day, and the itchy ears (and back) that I wake up to EVERY MORNING, disappeared.

    Hope this helps. Hang in there Suzanne,

    Dan
  8. kurt

    kurt Senior Member

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    Are you on Freddd's protocol? I found that adding hB12 (per Rich's protocol) helps clear the head, reduce headache, etc. So I take all three recommended B12s (h,m,a). Also magnesium is essential (I use mag chloride). Anyway, if you are feeling bad, I would consider that you might simply need LESS mB12 for awhile. The mB12 seems to force detox more than the h or a forms.

    In my own case, neither Freddd's nor Rich's protocol worked well, I had to combine them and then add some extras that turned out important for me and also several other people (but not everyone). B6, Bioflavonoids (Ester-C), Magnesium, and rehydration salts (I use a rice-based formula), those were required for me before things improved with mB12. Takes some patience, but definitely feeling worse is not part of the plan ... I think that just means you don't have the recipe right yet, for your particular situation.
    merylg likes this.
  9. suzanne

    suzanne Senior Member

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    Hi all,

    I am so fortunate to have all your input. Thanks for the moral support dannybex- I kinda feel like I have been on the airwaves too much lately, feeling completely lost. I will try and go through the issues that you all raised.

    Firstly, these are the supplements i am taking:

    Digestive enzymes w betaine, with meals.
    Jarrow bile salts, 2 tablets with meals.
    Douglas B complex 1 cap (includes methyl folate 400mcg)
    extra 200mcg solgar methyl folate ( 1/4 tablet)
    jarrows m b12 1000mcg sub ling divided into 4 times a day
    P5p 50 mg
    Sam e 400mg ( bed time)
    sunflower lecithin 1200mg
    molybdenum 300mcg (new addition)
    Carlson ACE 2 tabs vit A 10,000iu, C 1000mg, E 400iu, selenium 100mcg, calcium 100mg
    zinc picolinate 100mg
    selenium methione 100mcg
    milk thistle 10,000mcg
    adrenal cortex 250mg
    cal/mag 500/250mg
    l theanine 200mg ( at night)
    magnesium glycinate 200mg (at night)
    activated charcoal 4 teaspoons 2 hrs away from meals/supps.

    I visited my dr yesterday for some test results, and like always, I have gut issues that seem difficult to deal with. I still have streptoccus even though I have treated it over number of months. I also have candida, gluten antibodies, low Iga and confirmed leaky gut. Dr says I need to work on my gut. She knows I react badly to antifungals and many supplements so she suggested that I try to reintroduce some specific probiotics ( saccharomyces boulardii, metagenics SB ultra flora dysbiosis and VSL 3- not at the same time). She also suggested that i try coconut oil and ghee. She also suggested chlorophyl- i am now nervous about trying more stuff ( I think she thought the clorophyl may help my mercury type symptoms?) Yesterday I added a the boulardi ( bad idea) and itched even more than usual, got increased muscle pain that is still bad today- my head and neck feel like they have been caught in a vice. I guess the boulardi, no matter how much I need to improve my gut, just added to the detox load for my body. When will i learn? Just because the dr said to re introduce, doent mean i can come home and add stuff when i already feel overwhelmed, duh. Sound familiar! Today I am almost bed bound due to jumping in with another supplement.

    So that this post doesn't get too long winded, I will indicate what i am inclined to do next, based on your input. I wonder if the 13 weeks at 1000mcg and then the last 2 weeks at 1250 mcg of methyl B12 is just too much detox for my elimination pathways to deal with ( liver and gut issues). I am inclined to rest off all supplements today and then try and start again tomorrow with just 500mcg of mb12 and keep everything else the same. How does that sound?

    In relation to a few other things raised- i have added molybdenum a few days ago but havent noticed a difference at this point. As to salicylates, a dr once put me on a sal free diet and it didnt seem to make a difference to my symptoms ( but I will keep this in mind to revisit). I have added some fish oil which almost cant hurt (I have been on it before), but it did not seem to help me much. on the issue of glutathione, i did strat out on transdermal glutathione before i swithched to 'freds protocol'- I did badly on the glutathione and kept reducing the dose but had symtpoms of headaches and nausea that were intolerable even on tiny doses. I stopped it after about 10 days. Kurt- i was intrigued that you needed to add some of all the b 12's. I hadn't thought of that. About a year ago i started on the yasko protocol, which was a bit more tailored for me than Rich's- but largely the same except for Sam-e ( I under methylate and have a genetic mutation with MTHFR). The h b12 did nothing for me after 3 months so i stopped- the methyl b12 has been a whole different ball game. I felt increased symtpoms of all my preexisting and a few more ( teeth pain) start up within 24 hours. I started on 500 mcg mb12 and gradually increased over the last 15 weeks even though I had exacerbated symptoms. From what i read i thought that if i lifted the dose to 1000mcg, the start up should ease at about 3 months but no sign of that!

    The only other bits of informatin I can add is that all my symtpoms get worse if i try antifungals or mercury chelation. I suspect that mercury may be a problem for me. i am hoping to be able to revisit mercury issues done the track but was hoping that this protocol might hlp chelate mercury anyway- no one has said whetehr this is possible but I have read that the Swedish have done research to support that m b12 can improve mercury toxicity symptoms. Could it be that i am having a hard time as i am mobilising mercury?

    Thanks again to you all. Any other insights would be welcolme. I hope my slow down strategy helps.

    warmest, Suzanne
    merylg likes this.
  10. suzanne

    suzanne Senior Member

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    Oh, I had meant to say one more thing. Today the symptoms were really bad- I could not leave my house.

    I did a clay foot bath last night - hoping it would make me feel better- I am thinking that this may have given me that "kissed by a demon" feeling. It is not the first clay foot bath I have done. I have looked back n my diary and it seems I always feel worse the next day- I am not sure why or whetehr I should keep doing them. it might indicate that mercury is part of my problem.
  11. dannybex

    dannybex Senior Member

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    Hi again Suzanne,

    I'm no doctor at all, and have had a 'downhill' year or two, so take this with a grain of salt. But I would trust your instincts, and perhaps stop the clay foot baths, esp if they always seem to make you worse.

    Also, if you do have a confirmed leaky gut, then I would think that would be the priority thing to address.

    And finally, I know quite a few folks have wondered about this in the past, but it does seem like from several threads, that some of us just can't tolerate high-ish doses of b12 (and/or folate) and need to go slowly. Justy, Therron and others are talking about it in the last couple of days on this thread:

    http://forums.phoenixrising.me/showthread.php?14712-Methyl-B12-side-effects

    They both needed to cut way back, and/or start out with tiny, tiny doses. It's an encouraging thread, I hope you'll check it out.

    Dan
  12. xrunner

    xrunner Senior Member

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    If you suspect mercury or heavy metals, one possibility is that the protocol is raising glutathione levels and, according to Andy Cutler, glutathione mobilises mercury but without binding to it in a manner that can be excreted out of the body and can make it more toxic.
    Have a look at this site, there's lot of info on mercury, yeast and chelation.
    All the best


    http://home.earthlink.net/~moriam/ANDY_INDEX.html#sulfur
  13. Red04

    Red04 Senior Member

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    It looks like you are missing 2 out of 6 critical supplements. Adb12 and potassium.

    It sounds like your case is complicated. It may be best to cut back all the extra stuff and simplify things a little.
  14. suzanne

    suzanne Senior Member

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    Thanks for all the posts.

    I have cut back on the mb12. I now take 750 in divided doses a day rather than the 1250. it really has made no difference to the headaches and itchy skin. (I recokon the itching could cause me to jump into our harbour!)

    I have stopped the clay foot bath for now as they used to have some effect- but not sure if it was adding to my burden.

    Red- i am not taking adb b12 just yet as when I addded this I just felt worse and so i am trying to stabilise a bit first ( whishful thinking). The potassium i take but in a more naatural form as the proper sort cuases me Gi distress.

    I am really interested in the mercury mobilises theory caused by my glutathione levels rising. I am just not sure what to do about this- I am not in good enogh state to be able to do mercury chelation - I have tried most chelation protocols and the symptoms are pretty much what i am experiencing now- headaches, tiredness and itchy skin.

    I am thinking that it might help me to add some chlorella (slowly) and try and bind some of this mercury. just a theory, but perhaps worth trying to see if it helps. I am surprised that others havent had these problems with ongoing headaches and itchy skin?

    I also know i have a candida problem, which they say goes hand in hand with the mercury. I have read that candida can get worse when the mercury is mobilised so perhaps this is also happening. I know tha anti fungals cause me really itchy skin.

    I will try one thing at a time- starting with the chlorella. Any one else doing chlorella? Or got any other suggestions?
  15. xrunner

    xrunner Senior Member

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    I'm not an expert on chelation and I don't have any experience either. I'm in the process of replacing my amalgams and won't start any chelation until I'm done with that.
    I've only been reading about trying to make some sense of it all, as I've come across various approaches to detoxify mercury and heavy metals, which are often divergent in views etc. so it's been quite confusing.
    I'v recently made my mind up in that I'll be following Andy Cutler's chelation protocol. He is against chlorella, although other practitioners whose ideas I follow (for other things) like Klinghardt use it, albeit in conjunction with other chelators and some seem to benefit. On this one however, I side with Cutler. I pasted one of his postings on the matter fyi.
    All the best


    << Andy and all,

    Why should chlorella never be used as a chelator? Also, why should
    high sulfur foods not be used? >>

    The "sulfur" group in these foods is usually a thiol - an SH group stuck onto
    the carbon backbone of a molecule somewhere. One of these molecules is the
    amino acid cysteine. Many proteins in your body have cysteine in them.
    Thus, your body is full of -SH groups that belong to you.

    If you take something that has one sulfur in it, then that just goes and
    bumps the mercury off of one of the sulfurs that belong to you. Next time
    that mercury runs into another sulfur that belongs to you it might stick
    there. Since chlorella is just a good cysteine source, and all the other
    "sulfur foods" contribute molecules that have one sulfur in them in the
    active form, what happens is you make the mercury atoms play pinball among
    the proteins in your body. They bounce hither and yon - and mercury does its
    damage when it sticks to a new sulfur group that belongs to you, or comes
    off of one. Since the "sulfur foods" contribute molecules with one sulfur
    they don't hold onto the mercury any better than you do, and they greatly
    increase the amount of damage the mercury does without really removing much
    of it.

    Lipoic acid (as dihydrolipoate which your body converts it into), DMSA and
    DMPS each have TWO thiols per molecule so they hold onto the mercury atoms
    tighter than your body does and have a chance to really escort the mercury
    out instead of just stirring it up. Thus these are CHELATING AGENTS -
    chemicals with 2 or more binding groups per molecule so they hold on to the
    metal atom tightly. Chlorella, cysteine, penicillamine, glutathione,
    "sulfur foods," etc. are not chelating agents in any legitimate chemical
    sense.

    <<Should alpha lipoic acid only be used on a rotational basis and if so why?


    LA should only be used on a rotational basis because it affects the body
    balance of other elements, most notably copper and zinc. It does not
    deplete the body of these - it actually causes the body to conserve them.
    Thus if you take LA continuously every 3 hours you will eventually build up
    greatly increased levels of copper, zinc and perhaps other minerals. By
    skipping at least half the time you ensure that your body maintains a
    reasonable balance of copper and zinc, but still greatly increase mercury
    clearance from the brain and other organs.

    Also, it is impossible to mobilize the mercury and get it out without doing
    SOME damage. This is minor as long as you allow some time between campaigns
    to let it heal up, but you don't want to keep going so long it becomes
    significant.

    <<I am currently using alpha lipoic acid (100 mg 3 times per day on a
    continuous basis) on myself to help chelate lead. >>

    I don't know if LA is effective for chelating lead. DMSA, however, is
    absolutely excellent at that.

    I do know of several people who took LA 1-3 times a day this way and suffered
    long lasting neurological and cardiac problems due to mercury concentration
    caused by the rise and fall of blood LA levels. Two of these people
    subsequently have relieved these problems via proper use of LA (every 3 hours
    when taking it), demonstrating that a proper administration schedule is key
    to using any chelating agent safely.

    Lots of people take LA pretty randomly with no ill effect. Doing it "wrong"
    is no guarantee something bad will happen, which sometimes leads people to
    ignore the risks.

    Vitamin C supplementation is also well known (and properly demonstrated in
    the medical literature) to reduce lead levels.

    Given the choice of two effective methods to reduce your lead levels, if I
    were you I wouldn't use the LA for it. LA may well work but I would stick to
    something I KNOW works if given the choice.

    <<I am using chlorella and garlic (which I think is high in sulfur)>>

    Yes, garlic is high in "sulfur."

    << on my 4.5 year old
    autistic son during the 11 day "off" period of our DMSA cycle. Thank
    you.

    Dave Adams >>

    As you can see above, I would suggest doing it differently.

    Andy Cutler



    Onibasu Link: http://onibasu.com/archives/am/402.html
  16. suzanne

    suzanne Senior Member

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    Hi xrunner,

    Thanks for the information about Andy Cutler's approach to chelation of mercury. i had not read the particular posts that you sent me, and i am always grateful to get more input.

    Like you, I have read a fair amount on the issue of getting rid of mercury and some of it is contradictory- it seems there is not an agreed approach.

    About 6 months ago I got rid of my remaining amalgams. After that I did the Cutler protocol starting just with low dose dmsa- i could not tolerate it! I lasted 2 days on 3mg of dmsa every 3 hours and I was beside myself with what felt like candida die off symtpoms (so severe i was bed bound for the 2 days oon and then 2 days following stopping). My dr then tried me on dmps- same problems. Then i trialled humifulate, modified citrus pectin and zeolites- all gave me the same response- intense itchy skin, bad headches and nausea. Fredd's protocol has done the same thing but the symtpoms have been more gentle than the chelation symptoms

    My dr sugested that I try improving my methylation cycle instead of chelation of mercury ( given I wa tolerating any of the approaches) and that is how I came to be here. She said that it seemed like my body could not deal with any more toxic load until my methylation cycle improved.

    So, now I am in a bit of a bind. I seem to be feeling pretty "poisoned' again and perhaps ( only perhaps) my body is moving the mercury around. i feel like the only chooices I have at this point are to try either chlorella and/or alpha lipoic acid- despite what andy cutler says, as I almost feel like I have nothing to lose. If I feel better great. If I feel worse then I will stop. I am at the point where I think I need to do some trial and error with ddressing mercury as the symptoms I have got seem to be a bit stuck- constant itchy feeling, bad headches and nausea.

    Just as an aside, I have done a bit of reading in the last few days about Nitric Oxide in M.E, and found some interesting supplements as part of protocols to address this issue. It is too early for me to say whether any of this will be of use, or not. I am continue to poke around as I feel like something is missing from Fredd's protocol for me- I am better but wore at the same time- I am sure that I can feel better than this if i can just find the "right" factors. I will post some more on this if it turns anything up....interesting that some of the things that are recommended are part of rich's and fredd's protoco, like B12 and methyl folate, but some things are very different, like hawthorne berry, pomegranate, d ribose and a rationale as to why saunas are beneficial ( real science behind this increasing BH4).

    It is only a week of being on pomegranate ( I am trying to do one thing at a time). I have had to dramaticlly reduce the dose to 1/8 teaspoon every day ( higher than this and I get the runs and bad nausea- and I was sceptical that pomegranate would do anything!). Today is about day 5 and I have had a better day, but too soon to say with conviction. Will post about all this if it seems to be of any benefit down the track. Perhaps others are already taking these supplements? In amongst this research, I also read about a product called e c e ( iherb sell as fibronol) that is meant to be good for fibromyalgia. I have not heard of this and will do some more poking around on this.
  17. aprilk1869

    aprilk1869 Senior Member

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    Suzanne, have you done any kind of colon detox such as colonic irrigation or coffee enemas? In detoxing circles it's suggested that you start with the colon before trying to detox the liver. This will "clear the way" for toxins from the liver to be eliminated from the body. Also, a lot of toxins including mercury can apparently be reabsorbed via the intestines so it becomes a never-ending loop.
  18. xrunner

    xrunner Senior Member

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    Hi Suzanne,
    we are all doing some trial and error stuff to some extent and my experience hasn't been always successful at that. One also needs a bit of luck, which often seems to be in such short supply in CFS country. I hope you can get on the right path pretty soon.
    I have heard from various people about this connection between candida and mercury toxicity. Some time ago I read a something from Andy Cutler about this but can't find it (sorry, if I come across it I'll post it). I also wanted to mention that I found Naet pretty helpful as a desensitizing treatment. It's recommended by both Andy Cutler and Dr Teitelbaum. It helped me get over some adverse reactions to abx and other supplements that I did not tolerate well. It can work well with sensitivities and intolerance but not so well with classical allergies, in my experience. It may help your body to be less reactive to the methylation supplements and others you take.
    All the best
  19. Leopardtail

    Leopardtail Senior Member

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    I found the combination of these permanently helpful
    (5g x2 -3 daily) Ribose,
    (250mg x3 daily ) Acetyl-L-Carnitine and
    take both together with food, if they don't work add CQ10. If you feel light headed when taking them, or ache afterwards, take a spoon of sugar (up to three if you need them) or candy.

    (250mg x 2 daily) Creatine (with LOTS of water)

    (I stopped taking all of them four months ago and still feeling the benefit) - though I intend to restart.
  20. Violeta

    Violeta Senior Member

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    Suzanne, it's hard to know what's best for you, but if your headaches and itchy skin have been getting worse with the protocol, I think you should try cutting out all supplements and give your body a break. Just try for a while to eat good for you food and relax.

    This is not a popular subject, but there is a bit of information out there that a B2 riboflavin deficiency can be very easily brought on with supplementing folate and B12, even when taking a B complex along with them.

    B2 deficiency can be related to migraines and itchy skin.
    Tiger Lily 813 and merylg like this.

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