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Update and warning about methylation treatment

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Mindy, Oct 26, 2013.

  1. Mindy

    Mindy

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    I feel that I should put this warning out there for anyone looking to treat methylation. It has become an absolute nightmare for me and has put me at the worst healthwise I've ever been. I had a practicioner tell me to take methyl folate and b-12 based on homo a1298, but I was realtively healthy, no chronic problems (other than UTIs). Cleary, she doesn't understand methylation.

    Over the past couple of weeks after taking the methyl supplments several months ago, my symptoms turned into multiple chemical sensititivity after I started reacting to medications then supplements/herbs. It spread to me reacting to FOOD. The symptoms worsened to include head pressure and difficulty breathing when I ate. I lost over 10 lbs b/c I couldn't tolerate anything. I was only 113 lbs and nearly 5''6"; I am down to 102 lbs.

    I've gone to multiple drs. including Mayo Clinic ER and regular appts at Mayo. Everyone is clueless aside from a functional med dr. I also found. He, along with a nutritoinist I've had to seek out who understands MTHFR, both said I should have never treated methylation; I had no reason to. They both belive that gut dysbosis, adrenal and thyroid issues at play as well, so I've got to work on these, but it's difficult when unable to tolerate anything.

    Since taking the supplements 6 months ago, I haven't been the same. Primarily in reactions to foods. Initially, I (along with another practicioner I had to seek out) thought it was sulfur and ammonia. I only tested this using the sulfate test strips, which I question their reliability. In retrospect, I now wonder if it was histamine causing problems the entire time because:


    1. I've learned that folate and b-12 increase histamine, and I began taking both without balancing it with a complete b-12 as I had been doing for years prior
    2. Once I got into this mess, I ended up doing the full 23andme testing based on another practicioner's advice to see the full methylation genetic defects, turns out I had defects in the DAO genes, which regulate histamine. B/c I NEVER had a problem with histamine foods before, I believe that taking the methyl supplements may have caused this defect to become activated, which led to my inability to detox histamine.

    I now believe that my histamine levels are elevated b/c of the above (plus, I was eating a lot of high histamine foods this summer without realizing it), and that is part of why I'm in a mess now.

    Luckily I found someone on another forum that suggested the failsafe elimination diet for the chemical sensitivity. Thankfully that has helped me tolerate a few foods and has stabilized the weight loss. I have a long way to go, and I hope this resolves. I was NEVER allergic or had problems with any food/med/herb prior to this. I haven't gone to work in 2 wks either b/c my reactions have been so unpredictable; this is unlike me, as I haven't had a sick day in nearly 2 years until this.
    Last edited by a moderator: Oct 27, 2013
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  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    should probably have added to the title by a moderator: by methylation, otherwise people will come to this thread wondering what treatment it this person talking about?

    GG
  3. Critterina

    Critterina Senior Member

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    @Mindy ,

    You might be right about the methylation inducing histamine intolerance, but it may have been coincidence. I became histamine intolerant, with nasal and pulmonary symptoms, after a bronchial infection that was treated with levaquin, augmentin, levaquin, doxycycline, and levaquin. In the end, I had no infection, but still could not breathe and had colored phlegm and a broken rib. I was histamine intolerant. I started methylation over a year later and it has not increased my histamine intolerance. In fact, during this time, my histamine intolerance has responded well to dietary changes. During that first year I exhausted my pulmonologist, since I reacted poorly to all the COPD-type meds, but I did react well to a week of prednisone, which I repeated every 1-2 months...all the while eating my high-histamine foods.

    So, did the levaquin cause the histamine intolerance (or even secondary adrenal insufficiency), or was it coincidence? I don't know. I have not been able to find the pharmacists circular online for levaquin to see if any adrenal effects or histamine intolerance have been reported.

    Histamine intolerance may be related to low cortisol also. I had the DAO homozygous mutation for 52 years before I became histamine intolerant. But I started having low cortisol symptoms, and/or increases in these symptoms, when I took the antibiotics. I just analyzed my ACTH stimulation test tonight, thanks to @Ema , and found that I have a good case for requesting a diagnosis of secondary adrenal insufficiency.

    My course of action is to pursue the adrenal and digestive issues first, the thyroid next (now that I take synthroid, my morning temps are up but my T3 is down), and if there is residual histamine intolerance, address that then.

    While there is no such thing as a histamine-free diet, I found some good guidelines and cut them into a document. I am totally off the COPD-type meds and can frequently survive without the OTC meds. The guidelines I found work for me (let me know if you want them). Others may need to eliminate tyrosine also, and that's much more strict. While it's good-bye to tomatoes, spinach, pepper, cheese, beer, wine, and salami, and of course, pumpkin pie, cinnamon, and cocoa, it's really good to breathe, and I have the hope that some day I will be healthy enough to have my tomatoes back.

    I wish you health!
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  4. Mindy

    Mindy

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    @Critterina - so when you were seeing your pulmologist that first year, did you not yet make the histamine connection? And are you suggesting that the histamine caused your difficulty breathing?

    It appears this is my case; however, limiting histamine foods per the elimination diet for the past 2 wks has definetly helped me to breathe better. I also started taking small amounts of a natural anti-histamine, D-hist.

    It could be that the methyl supps and histamine intolerance are conincidential. However, my intolerance to foods definetly started when I took these supps (it was fairly immedate) AND I had difficulty breathing and weird head pressure, the same symptoms I'm having now. The question is whether that initial reaction was to sulfur or histamine as many foods are high in both. I didn't know about histamine at the time, so went on a low sulfur diet now realizing that was likely low histamine as well. Symptoms improved at that point.

    I then had a UTI and took several rounds of ABX AND at the same time started kefir, fermented vegs & apple cider vinegar thinking these were healthy yet they were very high histamine. Symptoms began creeping up again eventually "exploding" recently; I'm certain it was histamine at this point. And my new dr. says my sulfur genes aren't too bad. I am eating eggs again everyday now w/ no issue.

    A couple of questions for you:
    1. Would a pulmonologist understand the histamine connection? I meet with one at Mayo soon. However, I canceled the test they give b/c you inhale some chemical, and with my sensitivity thought it was a bad idea. I'm not sure what to expect from this type of dr. b/c I don't think it's asthma.

    2. Do people easily or ever eliminate the histamine issue? Again, this is new to me, and I'm not sure what the prognosis is. Sounds like you are headed down the same path my functional med. dr. stated - adrenals and thyroid first.

    I'd love to see the guidelines doc that you're following. Thanks for your input.
    Last edited: Oct 27, 2013
    Critterina likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Done.
  6. bertiedog

    bertiedog Senior Member

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    I just wanted to add that it was confirmed by an NHS Consultant way back in 1998 that I was an unusual person in that I had permanently high histamine and my skin reacted to everything it came into contact with. I know I was low in cortisol at the time but that wasn't picked up.

    Roll on another 4 years and I had crashed completely with ME/CFS and I had the 24 hour saliva cortisol/DHEA test done plus thyroid panel and these showed up a very real problem. I had Hashimotos thyroid disease and also my adrenals were unable to produce sufficient cortisol. Since then I have been treated with Prednisolone 6mg daily and 2 1/2 grains dessicated thyroid with excellent effect, they gave me back a life.

    Since then I no longer react to everything, in fact my severe hay fever has virtually disappeared and I don't react to foods apart from a chemical reaction to things like strong cheese, and chocolate which gives me migraine. Oh yes I still cannot tolerate wheat. I don't react to drugs like I used to but I don't have to take too many apart from the adrenal/thyroid meds and a low dose betablocker.

    I have been doing really well with a transdermal B12 spray at 4000 mcg daily rubbed into my arms. It has given me back my energy. However I am aware that at times I do itch occasionally and notice a slightly red rash under my bra which is itchy, so I definitely do think that the B12 can cause higher histamine. I will definitely keep an eye on it.

    I have found I cannot tolerate any extra methyfolate or MB12 apart from what is in the 3 Thorne's Basic Nutrients I have been taking since 2007 otherwise I develop the most incapacitating permanent migraines. However with this TD spray I don't get them at all. This is strange because Dr Myhill said it contains Cynacobalamin which I keep reading is ineffective. Maybe it actually contains some Hydrox too, either way I reacted so well to it within 6 days making me feel like a different person and this has continued now for 6 weeks. I haven't had energy like this since before I crashed in 2000.

    Thanks for posting your experience I think it is important because it goes to show we are not all the same and we need to be careful with methylation. I do believe there is such a thing as overmethylation because I have experienced it and it is horrible.

    I hope you get something sorted out, maybe give an adrenal cortex glandular a try?

    Pam
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  7. Violeta

    Violeta Senior Member

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    Which foods do you react to? Did anyone at the mayo clinic mention porphyria? The symptoms you mention sound a lot like porphyria.

    Choline and inositol might help.
    Last edited: Oct 27, 2013
  8. Mindy

    Mindy

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    Thanks for sharing your story, Pam. Glad to hear you're doing better ;that's very encouraging.

    @Violeta - I was originally reacting to a few foods including meat, gluten free oats, to name a few, but then it became almost everything inlcuding salad and olive oil, chips.

    Now that I've started the failsafe diet, I am handling potatoes, celery, green beans, barley, rye crackers, butter milk.

    I looked at porphyria, and no one has tested for that. However, there are a lot of symptoms with that that I don't have. But I should mention it when I'm there. Thank you.
  9. Critterina

    Critterina Senior Member

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    Mindy,
    When I saw the pulmonologist, I had no idea that there were histamines in food. I haven't been back to see him since, but he seemed unaware of food histamines/a food-based cause (allergy tests being negative and everything), and he hadn't considered adrenal insufficiency, either. And he seemed like a really good doctor - sending me home with experiments to see what worked and what didn't, since I wasn't responding to things like most people do, listening to my ideas and willing to try things. I ended up doing 5 days of prednisone when things got out of hand. I only had to do that every 1-2 months (after I stopped seeing him). I stopped seeing him when I cut most histamines out of my diet by trial and error (an allergy elimination diet). My list was longer than it needed to be - some foods guilty by association. Leftover meats still confused me, and some other things, too, so I wasn't really well, just off the COPD meds.

    When I eat foods high in histamines, my nasal passages will become blocked in minutes. And if I continue, my lung capacity (on spirometry tests) goes down by 20%. I hadn't made the connection between what I ate and not being able to breathe, and he didn't either. Of course, I was eating them at every meal and the congestion was pretty constant. I had had a chest infection and when it cleared up, I was histamine intolerant.

    I, too, went on a low sulfur diet and found I did much better. I learned later that it was because it was low histamine. I have to laugh...I had actually been doing a lot of Nourishing Traditions-type stuff, growing my own yogurt, kefir, and, my favorite, kombucha. Sigh...

    I don't know where I got this list of allowed and restricted foods, but it was somewhere on the internet. I hate not to give credit, but I do want you to have it.

    Have you got the two articles by Maintz, Histamine and Histamine Intolerance, and Histamine Intolerance in Clinical Practice?

    What do they have you inhale? I saw an ENT, and they stuff you inhale is just some sort of Afrin, and then something to numb you.

    I don't know about the prognosis, but life is better when I can breathe. Cortisol fights histamine. If I can improve my cortisol, a lot will improve, maybe including HI. I think my AI is secondary (brain, not adrenals), and if it's possible to reset the HPA axis, my adrenals may start working again (I can hope), or if I start taking cortisol, then maybe the HI won't be so bad. I am longing for my tomatoes!

    Really, it was only maybe the end of July when I stumbled upon the HI articles. Since then I have tested all the things on my list that are not on the Allowed-Restricted food lists, and I don't react to them. This week I was able to add back oats (guilty by association with cinnamon, I'm guessing). It was the last one. I went a year without any dairy, oats, and several other things.

    Stay in touch, OK?

    Attached Files:

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  10. Freddd

    Freddd Senior Member

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    Hi Mindy,

    I'll tell you what will make almost everybody sick who does start up methylation when it has been depressed, induced potassium deficiency and induced paradoxical folate deficiency. The paradoxical folate deficiency would explain the MCS, lots of food sensitivities etc. Look over this list and see if your symptoms are in which groups or not included.

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
    IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
    Group 2a - Both
    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
    Group 2b – Either or both
    Headache, Increased malaise, Fatigue
    Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency
    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
    These are the confirmed symptoms reported by me and hundreds of others with these symptoms and removed by taking the items, as well as gathering of symptoms from official lists etc. These are mostly ones that can start appearing in hours and worsen day by day unless corrected. Some start with 1 or 2 early ones and more show up by the day.

    You are playing YOU BET YOUR LIFE" . These things have real consequences. For instance untreated hypokalemia with methylation startup can kick in as high as at least 4.3 so if one is tested, "normal". If left untreated it can cause gut paralysis, heart irregularities, mood changes,heart and breathing paralysis and death.

    Maybe this can give some clues. These reactions are often called "detox" and can be deadly if ignored as "detox".
  11. Mindy

    Mindy

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    @fredd, thanks for the info. So how does one test/treat for hypokalemia? I do have sore leg muscles and body/muscles feel tight, arms sore. But I don't have all of the symptoms and yes, potassium tested normal. This is scary stuff that I want to check into.

    Is it possible to have symptoms show up 6 months after taking and stopping the methyl supplements? Thank you. I'm very scared about what's going on. I was essentially healthy and happy just months ago before ever taking these supps. I can't believe it.

  12. Mindy

    Mindy

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    @Freddd , and for the folate deficiency, I show serum folate of >24 and ref range is >5.4 for normal, but I do have some of these symptoms. I assume its probably not this issue based on my lab, correct? Thanks so much.

    My potassium level shows 4.6, sodium is also on the low/normal range, but the hypo. Issue could still be a problem? Ref range is 3.5 - 5.3.
    Last edited: Oct 30, 2013
  13. Violeta

    Violeta Senior Member

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    Pharmaceutical companies control med schools, a high percentage of doctors' minds, and a high percentage of peoples' minds. If you got yourself out of the loop, you're fortunate.

    And thank God for the internet and people sharing what they've learned, without which I would be lost.
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  14. Mindy

    Mindy

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    Actually, just checked other labs taken recently and they show potassium at 4.2 and 4.1, even lower. Interesting.
  15. Freddd

    Freddd Senior Member

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    Hi Mindy,

    It's important to keep in mind the difference between low serum potassium and what the docs are concerned about with hypokalemia. Potassium can be looked at as having two compartments. Most of the potassium exists in our body installed in cells and going nowhere and a little in between cells. Then there is the serum potassium that supplies what is needed for making new cells. If one actually turns on healing, the serum potassium can't keep up with getting potassium out of tissue and food is slow. After eating the potassium reaches peak absorption about 14 hours later. So sudden burst of cell making activity can induce low serum capacity such that other things that need it from the serum can't get it as needed and symptoms appear even though the tissue levels may be fine and the serum levels have recovered by the next day.

    Again, folate is tricky. If one has paradoxical folate deficiency there can be lots of veggie folates and folic acid and such but not enough L-methylfolate, the active animal form, when and where it is needed. Also if cellular MeCbl is low when it is needed the methylfolate in the cell gets kicked out and one has folate deficiency symptoms from methyltrap even though it is b12 that is low. Very paradoxical and it switches back and forth confusing everybody.
  16. Mindy

    Mindy

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    @Freddd - thanks again. Do you know how one should be tested for these issues?

    I'd really like to look into this because I just got salavia neurotranmitter test results and my histamine levels were normal, which is surprising. I wonder if they rose since I took the test. But that doesn't explain my difficulty breathing and chest tightness that just seems to be worsening even since I've started the elimination diet, which seemed to help at first.
  17. Freddd

    Freddd Senior Member

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    Most all the b12 research that addresses actual usage, they all say that "ONLY A TRIAL IS DEFINITIVE". The same is true with folates as well. I know of no testing that will tell you what a trial can. In this, a response is indicative whether the person interprets that response as a flag of healing or a terrible side effect. Without deficiency there is no noticeable response of any kind. A person with no appropriate symptoms has no response.
  18. Violeta

    Violeta Senior Member

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    Is the elimination diet high in protein?
  19. Mindy

    Mindy

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    It includes protein, carbs/grains, veggies, dairy, fats, very balanced if one can tolerate everything.
  20. UM MAN

    UM MAN

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    Mindy, I've been there. Just eating made my MCAD worst. I actually drank only water for a day, and felt
    the best I had in months. (it was not a long term solution, though)

    Please read my signature. For me CBS(low SAM levels, Mo and Mn) was the answer.

    As for histamine reactions to tomatoes....... Yes processed tomatoes really bothered me... BUT, I grow my own totamoes, and fresh off the vine, homegrown tomatoes cause me NO histamine reactions.
    Last edited: Nov 1, 2013

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