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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!
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!
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