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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Hack my reaction? Please help.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by jammies, Aug 8, 2013.

  1. brenda

    brenda Senior Member

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    No I have not been on the group or tried ALA as I still have an amalgam.

    I meant taking methyl donors if you are MTHFR.
  2. Vordhosbn

    Vordhosbn

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    I wouldn't rush too much to get the amalgam removed. You want to be careful your dentist takes proper precautions; things like an oral dam, air supply, charcoal and maybe some others; I'm not personally familiar as I never had amalgams, though somehow still respond to chelation.

    There is probably info on this in the Yahoo groups' files. I will try to hunt down some links and update this post.

    ...

    Okay. Well, I can't seem to find any specific guidelines for amalgam removal. It might be worth asking about that on the Yahoo group.

    Unfortunately the information isn't particularly well organised, especially on in-depth topics. The basics are covered quite well though on the following links...

    Overviews:
    http://www.livingnetwork.co.za/chelationnetwork/chelation-the-andy-cutler-protocol/
    http://onibasu.com/wiki/Cutler_protocol
    http://www.regardingcaroline.com/andycutler2.html

    Also, a preview of the book is on Google:
    http://books.google.co.uk/books?id=ZG9glNfif5YC

    All the information you need to follow the protocol is probably available online if you look hard enough, but it is generally recommended to read the Amalgam Illness book.

    The real use of the hair test, in my experience, is to give a clear reason to undertake chelation seriously. However some people have normal hair test results, yet respond to chelation. A trial round of chelation is apparently the only sure way to find out, but only DMSA or DMPS can be used within 3 months of amalgam removal. A hair test may be useful to track progress, but symptoms are the real guide.

    I think you can use the methylation and chelation protocols together. I have found the methyl Bs improve my on-round symptoms.

    Best of luck.
  3. jammies

    jammies

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    Thanks to everyone for all the suggestions. I am getting my last amalgam replaced tomorrow by a dentist who takes lots of precautions to protect everyone from mercury exposure. I am planning to start chelating after that.

    I am unclear on whether I should start the methylation protocol at the same time. Or wait until the chelating is done?

    My 23andMe results are as follows if that helps at all :) -

    COMT V158M GG -/-
    COMT H62H CC -/-
    COMT P199P GG -/-
    VDR Bsm CT +/-
    VDR Taq AG +/-
    MAO A R297R TT +/+
    ACAT1-02 AG +/-
    MTHFR C677T GG -/-
    MTHFR 03 P39P GG -/-
    MTHFR A1298C GT +/-
    MTR A2756G AA -/-
    MTRR A66G AG +/-
    MTRR H595Y CC -/-
    MTRR K350A AA -/-
    MTRR R415T CC -/-
    MTRR A664A GG -/-
    BHMT-02 CT +/-
    BHMT-04 AC +/-
    BHMT-08 CT +/-
    AHCY-01 TT -/-
    AHCY-02 AA -/-
    AHCY-19 TT -/-
    CBS C699T GG -/-
    CBS A360A AA +/+
    CBS N212N GG -/-
    SHMT1 C1420T GG
    -/-
  4. Valentijn

    Valentijn Activity Level: 3

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    I've deleted the appropriate -/- results, crossed out the other results where there's no research showing they have an impact, and highlighted in orange the results reported as -/- where you actually have the riskier version.

    Basically this shows little or no problem with methylfolate, but maybe a mild problem with recycling MTR. Hence B12 supplementation might help. Due to VDR and MAOA you might have some trouble with extra methyl groups from methylB12, so hydroxoB12 might be the safer version if you try higher doses.

    BHMT and CBS might indicate a bit of a problem getting rid of homocysteine. If that is the case, a normal amount of B6 could be helpful.
  5. jammies

    jammies

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    Wow - thanks so much for your reply! When you say no problem with methylfolate, does that mean I don't need to take it, or that if I take it it won't cause problems?

    Any B6 is okay then?
  6. Valentijn

    Valentijn Activity Level: 3

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    You shouldn't need methylfolate supplementation, based on your results. I'm not sure if any form of B6 is better than another.
  7. stridor

    stridor Senior Member

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    Not meaning to be repetitive. I started the Cutler Protocol in January 2011 after a horrible experience with amalgam removals. I lost effective thyroid and adrenal function and slipped into ME/CFS (on the brink since 2009). I had a precancerous bowel problem and wanted to get an immune system back and pushed the chelation process a bit as well as took high sulphur curcumin in large amounts. (In the end I lost the colon anyway).
    Because I pushed the timeframe on chelation for a couple of years I am ahead of the game and after 2 3/4 years have 3 1/2 years of chelation under my belt. I am not sure how much time I have left. I'm guessing that I will be done next year sometime.

    People with fillings or a sushi addiction, do need to exercise caution with ALA. It needs to be taken according to its half-life so that levels can be maintained. This is the cornerstone of the Cutler Protocol - all chelators taken on the basis of the half-life.
    In my opinion, and I can't speak for everyone, is that most of us get worse before we get better. But we do get better.

    So long as there are ongoing issues/exposures to heavy metals and in particular lead and mercury, the methylation system can never be optimized and therefore recovery will not reach its full potential. The mercury sites and the MTHFR sites both share the same list of topics. The symptoms of mercury are to a large extent the symptoms of disrupted methylation and the symptoms of methylation include symptoms of whatever toxins have accumulated. We need to remember that the Italians have one of the highest rates of MTHFR C677T in the world and yet do not have a particularly high phenotypical presentation. There cleaner Mediterranean lifestyle and diet higher in mfolates help. This lack of evidence concerning the causality of these types of SNPs to consistently produce illness is why many of us have had difficulty getting Drs (especially geneticists) to take us seriously.

    I am glad to see that mercury is open for discussion here. I will warn you that you will not get a warm reception if you wish to share what you have come to accept about methylation on the mercury sites. Don't let that stop you though. Take from those sites what you need to help with toxicity and take from this site what you need to help with ME/CFS.

    I am more than happy to share what I have learned from chelation. I suffered through a tough, tough chelation period before someone told me that I had methylation problems. Aug 2012 was a real turning point for me when I finally put mfolate and mB12 into my regime at the same time.
  8. Violeta

    Violeta Senior Member

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    Severe panic attack would point to the adrenals, wouldn't it? According to Traditional Chnese Medicine, depression is a sign of liver problems. So though what is happening seems to be just brain related, it's probably moreso related to your endocrine system. I haven't read too much at the website that I'm linking, but it looks very interesting and I'm so glad I found it. See what you think. Vitamin C and B5 are good for the adrenals. Low carbohydrate diets aren't. (Some people who do paleo are doing a low carbohydrate diet without realizing it, some are not doing it low carb; just thought I would mention that.)

    http://www.autismpedia.org/wiki/index.php?title=Mercury_Endochrinology
  9. stridor

    stridor Senior Member

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    You can trust the group and Cutler. Don't expect a lot of tolerance for methylation theories. He is there to help get the mercury out. This group will help with everything else.
    I started the chelating in Jan 11 and will wrap up sometime between Christmas and summer.
    tinnitus has improved 40%
    eczema 75%
    psoriasis 50%
    Bipolar 100%
    focus and colour saturation 100%
    xxx performance 75%
    dyspepsia 90%
    depression 100%
    OCD traits 90%
    Anxiety 90%
    Agoraphobia 100%
    nocturia from 4 times a night to once
    diabetes insipidus from 20+/day to normal
    thyroid problems ??? no intention of going off meds
    adrenal - improved to where I do not have to stress dose hydrocortisone but need regular dosing
    noise intolerance - 90%
    It works and ALA needn't be feared if used correctly - it is a tool. Like all tools ALA can hurt you if mishandled.
    helen1 likes this.
  10. jammies

    jammies

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    Thanks again for all the encouragement!! I am happy to read that your have improved so much. I am feeling so much better with the methylfolate and AdB12 added that I can take a breath and make a decent plan to proceed with chelation.

    Thanks!!!
  11. sunking101

    sunking101

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    Not so sure I would go down the mercury/ala route with this. I too started the methylation protocol a few months ago and experienced increased energy, much reduced PEM and an upturn in mood. I was taking a potent B Complex along with the Mb12 and methylfolate. After a few months I started to have angina and after reading up greatly on the subject, it appeared that I was possibly allergic to B12/or I already have heart disease which causes angina if B12 is supplemented (a worrying thought).
    Anyway, back on topic...I stopped taking the Mb12 and folate but continued to take the (strong) B Complex. My angina/angina-type discomfort didn't go away so a few days later I stopped the B Complex too and hell, if I didn't become suicidally depressed 24hrs later! A real crushing depression which had me extremely tearful and considering suicide. This lessened after a few days and then I began to feel more & more drained. My fatigue rushed back and I was upset that all the gains in this area were disappearing before my very eyes.
    So I began to just take Mb12. I took daily sublinguals of 1000mcg which alleviated a lot of my worsening fatigue and also improved my mood. This regime was fine for a few days (it's always a few days isn't it!) and then I started to suffer from tremendous anxiety. I figured that as I hadn't taken a B Complex for over a week that I must be low on something as I kept reading that all the B's depend on each other and work as a team. Thus I popped a B Complex capsule, which is something I had taken daily for three months with no problems at all.......well it brought the crushing, suicidal depression back and also the angina. I had horrific anxiety and just felt awful.

    That's where I'm at now. Depressed, anxious, worn out and a shadow of my former self. It seems that taking the B Complex causes me severe problems and that not taking the B Complex causes me severe problems :-/
    Taking Mb12 by itself also causes severe problems (angina, anxiety) but doesn't bring the dreadful depression along with it.
    I'm stuck in the middle of a massive problem and don't know what to do in order to bring myself out of this hole. It is definitely one or more of the B vitamins/folate which has caused this problem for me. It is either an allergy or health issue which has caused me to struggle greatly on the methylation protocol.
  12. stridor

    stridor Senior Member

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    @sunking 101 jammies
    I am sorry to hear about the difficulties that you are having. Sounds rough. I feel that I need to point out that nothing in your post supports your opening sentence re mercury/ala.

    Here's the thing. Methylation and mercury or both can cause heart problems. My brother and I were both exposed on the farm to mercury and he had angina from the age of 45...yet his coronary arteries were OK. Keep in mind that angina is a symptom of limited oxygen availability or utilization.

    Every now and then a kid dies on the basketball court in high school. They found that these kids had big flabby hearts and Hg levels 22,000 times what was expected. Hg affects hearts.

    I have CCSVI. This is where blood squirts back through the tricuspid valve towards the brain. It is thought to be related to methylation disturbances in the mitochondria affecting heart function. Methylation affects hearts.
    I doubt that anyone can make a full recovery from ME without addressing toxins.

    Have you tried CoQ10? or carnitine? Both have a role to play in heart function. Pushing the methylation system with things like mB12 (love it, take tons) rams methylation forward. If you have problems in other areas they can be accentuated. It isn't necessarily something that you are taking that is driving your symptoms...it could be something that you are not.

    For example, I started mB12 in Dec 2011 and my tongue swelled and split. Just about as sore as a tongue can get. I said to myself, "Obviously my body doesn't like mB12". But it wasn't what I was taking. I didn't have enough B2 on board for this system to be rammed forward.

    Also divide capsules - split pills and sneak up on what you can tolerate. I did all my B's separately for the first year. I have only gone to a complex in the last month. Does this sound like a plan?

    SAMe made me suicidally depressed. I still cringe when I see it mentioned on the board. Friggin' hate that stuff. So yes, getting methylation wrong can have huge ramifications....at least for guys like you and me.

    Good luck. When you get some answers and can move forward, do some research into heavy metals...my spidey-senses tell me that you and my brother have things in common.
    helen1 and sunking101 like this.
  13. sunking101

    sunking101

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    Very informative, thanks.
    It all seems soooo difficult to fix and I just don't think I have it in me anymore. Plus my doctor won't hear of ANY of this stuff. My blood results are normal yada yada :-/
  14. stridor

    stridor Senior Member

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    sunking101
    Everyone on this board has been to the place where they want to throw in the towel. Many, many times. We don't though because that drive inside that got us this far just won't leave us alone. We know that there is a biochemical basis for what's going on and we can't stop looking for answers. Take breaks, maybe.....but we are driven.

    One of the turning points for me was finding a Dr who "got it". He understood that Bipolar wasn't a disease so much as the expression of underlying biochemical problems. I found him by puttting "Integrative Dr. Ontario" into google. The biggest thing with this guy is that he still believes that there are things to be learned.

    Good luck. You are half way there....You know the question, "am I affected by methylation and/or the supplements used to treat it?" You are closing in on an answer.

    Do you have 23andme testing yet? Will testing for Heavy Metals be a consideration?
    helen1 likes this.
  15. sunking101

    sunking101

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    I've been fighting ME for over 20 years but when the supposed cure gives you angina and makes you suicidally depressed, it's kinda hard not to throw in the towel. Palpitations, die off and increased fatigue I can handle but severe heart probs and feeling like I want to die? Not so much....

    I have had no testing outside of the NHS, mainly for financial reasons but with a little bit of a fear of snake oil practitioners.
    The fact the methylation protocol has messed me up so badly does make me think there's something in it, ie that my own cycle is rusty or needs the tyres pumping up :)
    Should healthy people be able to take these supplements with zero side effects, or would messing with their methylation make them feel lousy too?
  16. jammies

    jammies

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    Oh wow - that sounds like hell. I know that horrible depression and dread the idea of it coming back for even a day. I am so sorry you are suffering.

    Have you considered trying anti-depressants? I know they do not treat the underlying issue, but for me, they allowed me to get well enough to both survive, and to continue trying to treat the real issue. Also, I had some issues with B complex and methyl B12 as well, but much to my surprise, low doses of methylFolate have helped me immensely....literally within days. I also added a tiny bit of adB12.

    Could I ask you a question? You said you would NOT go after the mercury/ALA thing, but if I read correctly your problems came from treating methylation issues? Have you tried the ALA/mercury chelation.

    Please, try to be kind to yourself while going through all this. The depression CAN be treated and won't be there forever. I know it's hard to imagine when you are in the pits of it, but there is life on the other side of this abysmal place. If you feel suicidal please tell someone and get help before doing anything.
  17. stridor

    stridor Senior Member

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    sunking101
    Trust me. I am not suggesting for one minute that you continue what you have been doing. I think that angina is scary stuff. I hope that you take from me posts that I am recommending avenues for change. And in particular, looking for a Dr. who gets you.
    After following directions from my Dr who thought I had methylation problems (but guessed the wrong treatment option), I got depressed with SAMe. It opened my eyes to how bad things could get messing the wrong way with methylation. I changed everything and started over. 23andme confirmed that the changes I made were supported by the test results.

    Messing with methylation will screw anybody up. Normally, it takes mercury, lead or another toxin. Someone with normal methylation would not notice much change taking folate or B12.

    Some people with COMT+ have a hard time with mB12. They need to take magnesium and ease in slow. There'll be stuff on this site about that...I don't have this one to any degree.
  18. jammies

    jammies

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    So I know this thread is quite old but I wanted to come back to give a HUGE thank you to the folks that pointed me in the mercury direction. I do feel very certain that the severe depression/anxiety was brought on my using ALA while I had my mercury fillings replaced. It has taken a long time, but I safely removed my other fillings and have been chelating using the Cutler protocol suggested here. I have done about 25 rounds of treatment and am happy to say my depression and anxiety are completely gone. I'm off all the meds!

    I still have problems with fatigue though :( Some may get better with more chelation and I have FAR more good days than I ever had before. But I still think I have issues that are genetic. I am finding that my Vit D3 levels are always low and that supplementation makes me worse. Also have a borderline bad thyroid. And still haven't got the l-carnitine on board.

    Tough journey. But happy to at least have found the root cause of the hell I was trapped in.
  19. stridor

    stridor Senior Member

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    This is good news. It is not the normal pattern of progress though. Most of us got sicker before we got better and had to ride things out until after the dump phase - around 9 months or so. Do you have Cutler's book? Page 52 has a graph to show you how many progress with this. I am not sure that it applies to those of us in whom ME/CFS has been triggered.
    For me, recovery has always been 2 steps forward and one back. If you find that you have this don't worry - keep chelating. I am now approaching 250 rounds and am not done yet. OI has decreased and I can stand for 15 minutes without a problem. Fatigue is now tied to the event and not post-exertional as in 2 days later like before.
    Many of the other symptoms are gone - bipolar, eczema, psoriasis, folliculitis and others. Brain-fog is low enough that I have to search for it when I am busy and engaged but it creeps back in if my mind is not active. There is still daily variation and it is the sign I use for when to start and stop rounds.
    When the dust finally settles on this, all I may have left is the adrenal insufficiency. This and gluten sensitivity are the 2 things that have gotten worse as time has gone on. The adrenals I blame on the mercury and the gluten sensitivity on losing the colon and having a lower threshold for the symptoms.
    Hoping that the rest of your recovery goes smoothly. brad
  20. jammies

    jammies

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    THanks for your comments! Your improvements are impressive! I really know the 2 step forward 1 step back thing. It's really getting me down about the prospects of a full recovery. I'm super ecstatic to have the depression gone though. Nothing was ever as bad as that depression/anxiety. But now I want more health!! And like you, I feel like my food sensitivities are actually worse than when I started.

    I've definitely been through the dump phase - probably still in it but ramping down!! According to AI, if you chelate in the months after amalgam removal you will experience a worsening of symptoms, but not usually to the level that they were before amalgam removal. This was my experience exactly. As soon as I started chelating with DMPS after amalgam removal I felt great. Three months later the dump phase hit and I felt much worse, but not as bad as I had in the very beginning. Now I'm coming out of the dump phase. My depression/anxiety have not returned. But I am still struggling with serious fatigue. I have quite a few symptoms of thyroid problems and borderline thyroid tests so I'm going to try that.

    Sigh. Never seem to find that silver bullet. I will keep on chelating though - I'm on pretty small doses yet so likely have room to improve.

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