Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Trying to heal my teenager - Celiac/CFS/Bipolar/MTHFR

Discussion in 'General Treatment' started by rubydragon, Feb 23, 2014.

  1. rubydragon


    Hi all - I am desperate to help my 16 year old who seems to have B12 deficiency and possibly CFS. She also has gut issues and a Bipolar I diagnosis. I typed this up for the ND we're meeting with next week, but I thought I'd post it here also for any feedback this community thinks might be helpful.

    I had her DNA screen done via 23andme in January, and I have a methylation pathway analysis generated on the Yasko site. I was planning to jump in with the recommendations. For five days earlier this month my daughter took Perque sublingual 2,000 mcg hydroxocobalamin (I'm not sure how much absorbed, because we didn't know she was supposed to let it sit there as long as possible) and 400mg SAMe. On day 5 (Valentine's Day), she switched dramatically to a euphoric manic episode, and I halted those two new supplements.

    Researching madly for the past week, I found the goldmine that is this site and am completely chagrined and embarrassed about how I rushed in so foolishly! With that said, she has been in the most incredibly euphoric mood I've ever seen her in in her lifetime. Her only other obviously manic episode was induced by Lexapro last fall and it was a mixed state dysphoria - not pretty, not even remotely euphoric and by the time we figured out that Lexapro was the culprit, she was having psychotic episodes. Her bipolar dx was only cemented after the episode of this past week.

    Going into this, she's been stable for the past six months on 900mg lithium and 200mg Lamictal. (Stable not meaning happy or energetic - just less depressed relatively and not intending to kill herself, though the ideation persisted at a lower grade). On the advice of her pdoc, I increased the lithium slightly for a few days to help pull her down from the mania. I also dosed her with 1000mg GABA and 100mg niacin 2x per day (that dose has not induced a flush yet). She seems to be coming down gradually more each day, though not to baseline yet. I would like to start titering her up with the B12 protocol once she's stable again, but far more carefully this time. I severely underestimated the effect OTC supps could have on her brain chemistry - until now, nothing we've tried has been so dramatically effective. I don't know if I should EVER give her SAMe again, but I realize now that there are (probably?) a lot of steps to get in place first before we even worry about that.

    A little personal health history:

    - Celiac/leaky gut - possibly starting as early as 4th grade, but so insidious that we didn't catch on until she was in 8th grade and suffering from IBS more obviously.
    - Persistent dermatitis on her elbows and feet. Maybe eczema, but it never itches. Not psoriasis.
    - Gluten and (mostly) dairy free since June 2011. IgE allergies to dairy, beef and pork. Sensitivity to tree nuts and coconut. She eats cleaner than most people, let alone teens - mostly homemade whole foods.
    - Epstein Barr exposure showed up on her labs over 2 years ago. Recent labs indicate she's still fighting it off, but the value has come down
    - Just found out this past week that her iron is low - this is new.
    - Her labs show her B12 is out of value on the high side (1100) - as I understand it, this is consistent with one of the FUT2 mutations she has and does not mean absorption is necessarily happening? Unfortunately, this was never noted as a red flag in the past three years.

    - Her older sister also has celiac disease and lower grade neuro issues (anxiety and ADHD). She's my next project as soon as I have the budget for 23andme!

    - Her grandmother - my mother - died at age 65 after catching c.diff in a psychiatric nursing home. In hindsight, I'm wondering if undiagnosed celiac and B12 deficiency were complicit. She had MDD (including several suicide attempts), psoriasis from childhood, MS, type 2 diabetes, obesity, diverticulitis - and that's just the stuff I even know about). In the final years of her life, she was basically bedridden, diagnosed failure to thrive upon admittance to the psych facility.

    My daughter's symptoms include (but not necessarily limited to):

    - Persistent GI issues despite elimination diet and supplementation. We did GAPS for three months before she burned out. Paleo for awhile, but the girl needed more starch.
    - Sensitive to touch, sound, fabrics, perceived slights
    - Constantly tired and low energy (she revealed the other day that sometimes she sits in the shower). She sleeps an average of 12 hours per day.
    - Depression
    - Social and sometimes generalized anxiety
    - Suicidal ideation
    - Anger and irritability
    - Insomnia and an unregulated sleep cycle
    - Dry skin and dry hair (but great nails!)
    - Prone to canker sores
    - Memory issues
    - Significant focus issues that interfere with learning (historically she's been academically ahead of the curve - now she cannot function in an academic environment at all)
    - Eye floater
    - Transient tingling in fingertips (she talks about it being most noticeable after a shower)

    I have the longer report from Sterling's App, but these are the methylation cycle mutations noted in the Yasko report:

    - Homozygous MTHFR A1298C and SHMT2 (leaky gut??)
    - Heterozygous MTR A2756G, COMT V158M and H62H, VDR Taq, BHMT 2 & 8, ACAT 1-02
    - -/- CBS (and SUOX)

    Current supps - many of these we've been doing for 2+ years:

    - Blue Ice fermented cod liver oil
    - Probiotics (and ferments)
    - Mag malate
    - Vit D
    - L-glutamine powder
    - Arabinogalactan
    - B Complex (the wrong kind!! discontinued when I learned about MTHFR)

    More recently I've started giving her:

    - Vit C
    - GABA
    - Seeking Health Optimal Multivitamin
    - About to start her on iron
    - Looks like I need to add in the folinic acid BEFORE starting up the methylation protocol because of the homozygous SHMT

    Short term she's taking Chinese mushrooms and astragulus to help her fight off EBV.

    I tried to keep this brief, but it seems I failed. Thank you for reading. :) Writing all this out has frankly been terrifying. Her health has been in a free fall, and I'm very anxious to reverse the trend. I didn't even realize until a couple weeks ago, when I ran the Yasko report, that B12 deficiency and CFS could be an issue. No doctor has suggested it so far. When I started researching it, I realized it fits with everything that's going on with her.

    I would love any feedback about the best next steps, and any other insights or shared experiences anyone might have!
    Last edited: Feb 23, 2014
    merylg likes this.
  2. Martial

    Martial Senior Member

    Ventura, CA
    I would suggest checking out Fred's protocol, and perhaps she could possibly have lyme and not CFS.. I thought I may have had CFS but it turned out to be an undiagnosed case of Lyme, my symptoms now are also very obvious of lyme but not back then...

    If you do that go to an LLMD and make sure she is tested through IgeneX that is the only way you will get an accurate reading, would explain the low iron as well...

    Was she bi polar her whole life or did it develop recently? Both lyme, and b12 deficiency can trigger mania and depression, though her's sounds like it could have been simply inherited.

    The b12 test that was over range is not really accurate per say if she got it done after using the sublinguals, if it was done before the supplementation than those would be two different causes, after using sublinguals and getting a b12 test most people will show levels way out of range but only from the supplement in the blood stream, not necessarily informative of how much they are actually using..

    Supplements look great but I would be careful with glutamine, that is said to sometimes act as an excitotoxin.

    Keep her off all folic acid and supplement methyl folate instead, this is very important to stop any methyl traps, as well as stopping all NAC, and Whey Protein, and glutathione supplements.

    Hope this helps!
  3. rubydragon


    Thank you, Martial! I am going to see about testing for Lyme, and appreciate the tip on the best test. We've lived in Phoenix since 2005 so it hasn't been on my radar. But... travel happens and we're originally Ohioans.

    She does have a genetic propensity for bipolar according to the information at Promethease, and there are markers for early onset. But her malabsorption issues could have started younger than I ever realized, too. However, she's never yet demonstrated an organically-triggered episode of mania. I honestly don't know what to think about it, but I hold out hope that correcting nutritional deficiencies might help resolve her neuro issues. Hopefully not too much permanent damage has been done... time will tell.

    The B12 result was from labs done several years ago when we were trying to figure out her IBS issues. I was supplementing B complex (the wrong kind) and we are meat-eaters, so I think it's like you say - the B12 blood level doesn't necessarily translate to its effective metabolism.

    Thank you again for taking the time to read and reply!!
    merylg likes this.
  4. rubydragon


    Also, I've edited my original post - I'd forgotten to include the critical COMT mutations.
  5. Martial

    Martial Senior Member

    Ventura, CA

    No problem, also there is nothing indicating your daughter has neurological damage, especially anything permenant... uncontrolled diabetes, MS, or anything that breaks down the myelin sheath, or spinal cord degeneration can do that.. Nothing your daughter apparently has going on..

    I have a friend that recovered from MS and severe type 1 bi polar disorder that wrote a book on it though... Here is a link, maybe your daughter would enjoy it!

    Attached Files:

    rubydragon likes this.
  6. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi, I hope you manage to get your daughter sorted out. Im wary of those who have ME and end up with a psych diagnoses like bipolar as so many of us have so much going wrong in our bodies that its easy to be given wrong diagnosises as things can be too easily missed. ME/CFS itself too can affect ones emotions and also cause personality changes etc (this kind of thing is mentioned in some of the ME outbreaks).

    eg In my case I can get severe mental health affects from certain drugs eg a contraceptive pill had me end up in a psych hospital for a week..fortunately managed to figure out what caused my mood to suddenly shift and get worst day by day so fixed the severe issue by stopping this drug. Another time I took St Johns Wort, that sent me on the wildest scary trip!! (worst then a rapid cycling bipolar state)

    I developed a problem with high insulin (prediabetes state) and it took 4? years for a doctor/specialist to discover the issue (for one to do a test for this). One of the side affects of me having a big insulin spike is it affects my moods greatly when that occurs, I can swing into feeling suicidal or have swinging moods due to it. I assume I get such a severe reaction from hyperinsulinemia due to me also having MCS which possibly makes me more sensitive to chemicals such as insulin in my body too. My mood swings, suicidal episodes are now completely controlled just by diet (except for occassionally PMDD episodes).

    IF your daughter has irregular periods suspect she could have PCOS and with that a very strong likihood of having hyperinsulinemia and possible mental health reactions from it (most in the medical profession are unaware of the severe mental health reactions some can get with this). My specialists have me on a diet which is more strict then a diabetic one due to my extreme reaction to carbs (wrong diet also makes my ME/CFS worst in many ways).

    I know there is a connection with bipolar and MTHFR (of the other type, not sure about your daughters type of MTHFR) and schizophenia in some .. active folate has been found to be very helpful in some with schizophrenia(which makes me think many are getting these mental health symptoms due to MTHFR and folate deficiency. MTHFR too has actually been linked to schizophrenia symptoms).

    Anyone who has ME/CFS needs to take great care when trialing any supplements or pills as we can get all kinds of severe reactions to them even ones which may seem quite harmless. I suggest to start off always at a quarter of a normal dose and work up to make sure its not going to have some form of dreadful affect.

    best luck with your family.. it sounds like you have a handful there with your childrens issues.
    rubydragon and merylg like this.
  7. rubydragon


    This study might explain her high plasma B12 level. My daughter is homozygous for all three FUT2 SNPs.

    Nature Genetics 40, 1160 - 1162 (2008)
    Published online: 7 September 2008 | doi:10.1038/ng.210

    Common variants of FUT2 are associated with plasma vitamin B12 levels
    Aditi Hazra1,2, Peter Kraft1, Jacob Selhub3, Edward L Giovannucci2,4, Gilles Thomas5, Robert N Hoover5, Stephen J Chanock5 & David J Hunter1,2,4,5,6

    We identified a strong association (P = 5.36 [​IMG] 10-17) between rs492602 in FUT2 and plasma vitamin B12 levels in a genome-wide scan (n = 1,658) and an independent replication sample (n = 1,059) from the Nurses' Health Study. Women homozygous for the rs492602[G] allele had higher B12 levels. This allele is in strong linkage disequilibrium with the FUT2 nonsecretor variant encoding W143X, suggesting a plausible mechanism for altered B12 absorption and plasma levels.
  8. rubydragon


    Ah, looks like I need to add in folinic acid BEFORE starting up the methylation protocol because of the homozygous SHMT. Is this a forever, maintenance supplement?

    This is so incredibly complicated. :(
  9. rubydragon


    Thank your for your feedback, @taniaaust1! I am skeptical of the bipolar dx - but also don't want to be in denial. I'm more inclined to think that MOST mental illness (like so many diseases that affect other organ systems) has its root in nutrition and/or lack thereof. I figure if we can get her healed to the point that she doesn't even need psychiatric meds, the main thing that would differentiate her from someone who has "true" bipolar is that we went the holistic route. Either way, she's clearly going to need lifetime management of this rather complex genetic hand she's been dealt. :p

    She's a trooper through all this, but she is struggling with the realization that her health problems aren't a transient inconvenience. If we can get her feeling GOOD (possibly a state she's never actually experienced in her lifetime), I think she'll be mostly grateful that we figured out how to make that happen at all and will do what it takes to maintain. I suspect she's always felt some grade of uncomfortable, but doesn't even realize it since she's never known anything else. She was irritable from her first breath and needed a lot of extra loving to accommodate her sensory needs. She has always been a person - from her earliest days - whose cup of need has been bottomless. As I connect the genetic dots, it's all starting to make sense. Would that I had been able to figure this all out sooner.
    merylg likes this.
  10. taroki

    taroki Senior Member

    Ontario, Canada
    rubydragon, that's wonderful what you are doing to help your daughter!

    I was diagnosed with Bipolar type II back in 2012 and that disappeared last year soon after starting Methyl B12 and Xymogen's Opticleanse GHI (cleanses gut, liver, etc). It was later that I found out I have Lyme disease and I believe that is what has caused all these psychological diagnoses.

    My Asperger's and ADHD has also improved with detox. Now working on my gut issues.
    taniaaust1 likes this.
  11. Starfive


    on a lighter note :) if I could pick either your fluffy dog rubydragon or taroki's kittens to be my healer.... hmmmm, I am torn. hmmmmm, just send both! Such is love at first sight. :rolleyes:
  12. Hip

    Hip Senior Member

    Very low dose amisulpride may work well for your daughter's ME/CFS, depression and irritability symptoms. This drug is good for bipolar depression. I found that very low dose amisulpride (12.5 mg daily) had a very clean "natural" feel to its antidepressant effects. I also found very low amisulpride pretty useful in treating the sound sensitivity. It made me feel socially more robust, so that perceived slights and emotional conflict (which many ME/CFS patients are unfortunately very sensitive to) become easier to deal with.

    N-acetyl-glucosamine may significantly help the generalized anxiety disorder, and 500 to 1000 mg of choline bitartrate is a known treatment for social anxiety. I take all of these supplements and drugs daily.

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