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Diagnosis Unclear After 15 yrs

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by AimingHigh, Jun 27, 2014.

  1. AimingHigh


    This is my first post here. I have spent a lot of time reading threads and trying to absorb it. I have seen about 10 psychiatrist and several holistic MDs at this point. I have had brain scans at Amen Clinic in California. If you have had success treating the symptoms I describe, I would greatly appreciate your feedback. I am also attaching my Methylation results from Yasko's lab, as well. I have some questions specifically related to these results as well.

    I have been fairly healthy in a physical sense for much of my life. I got sick a lot as a young child, but I haven't been too prone to sickness since then. However, my struggle has been with psychiatric symptoms since I was a teenager. I am 32 years old now. I have been diagnosed with the following psychiatric "disorders" by conventional doctors:

    Generalized Anxiety
    Social Anxiety
    Bipolar II

    psych issues from greatest discomfort to least:

    social anxiety - crippling. I'm having a hard time holding down a job. Confidence is very low. Test positive for online Asperger's tests
    brain fog/fatigue - I am not physically fatigued so much as lack brain energy with a lot of fog
    rampant/disorganized thinking / lack of executive functioning/decision making / ADHD
    bipolar swings

    I also have the following physical issues:

    bowel inconsistency (more towards constipation)
    stiff/tight shoulders and hips
    tight muscles in upper back/shoulders and upper legs (especially quadriceps)
    floaters in my vision
    very difficult for me to read. have difficulty focusing my eyes, especially when viewing a monitor
    wake up unrefreshed even though I fall asleep quickly
    white coated tongue
    stiff/awkward gait - I think about my walking posture all the time
    prone to canker sores, but typically just when I get a cut in my mouth
    chronically low free and total testosterone levels
    elevated reverse T3 level - low body temp
    varying cortisol levels from high to low
    depressed CD-57 level around 70
    inconclusive western blot test for Lyme
    Double mutation on MTHFR c677t gene (I know you're not real big on genetic testing)
    Single mutations on two MTRR genes
    Overall 6 mutations on methylation panel colored "red"

    I have currently been seeing a functional medicine MD for the past two years. Based on symptoms he began testing me for heavy metals, Lyme Disease, and methylation defects. He ruled out heavy metals as the causal issue, and he has been treating me for LD and methylation issues since. Two years later, I am just as anxious, but my fatigue has maybe improved marginally. I am currently taking around 100 pills per day which are mostly supplements with a few medications sprinkled in. This doctor is also treating the rest of my family for Lyme Disease and methylation defects with some benefits seen in my kids, but nothing drastic. We cannot afford to keep up this pace for financial and emotional reasons.

    I'm currently tapering off of sustained release T3 to help with elevated reverse T3. I am also on testosterone shots and taking Dexedrine and alternating with Concerta 54mg to help with brain energy. I still feel like crap though.

    My job is really struggling, and I'm having a hard time working with people at all. Making eye contact. Having normal converstion, etc. is almost unbearable. I've become pretty desperate, as I need an income to pay for treatment for myself and family.

    I have been taking AdCbn from Source Naturals @ 10mg tabs roughly twice a day for the past week and a half for a total of about 20mg per day. I have been sure to hold between lip and gums for an hour or more. I have also added in MeCbn from Jarrow at 5mg tabs for the same daily dose of 20 mg. My doctor had previously had me on about 3 mg of methylfolate (Quatrefolic), and I have since increased that up to about 6 mg a day.

    I thought a noticed a big relaxation feeling in my muscles one day when I took 50mg of AdCbn. It was last Sunday, and I had a horrible day to that point. I don't know if it was placebo though, as I have been very up and down since. I know I need to get a more steady dosing schedule to better monitor any progress, but supplements really haven't had much affect on me at all in the past.

    Based on my mostly neuropsychiatric symptoms, do you see that methylation is the main underlying issue (as opposed to chronic infections, etc.)?

    What do you think about my COMT / VDR Taq status? 2 of 3 COMTs are Hetero along with VDR Taq. Yasko seems to favor HydB12 over MethylB12, but this seems to be controversial. MethylB12 with methylfolate OK in this case?

    I have been taking large doses of Niacinamide (1500 - 3000 mg per day) for many months now. Dr. Klinghardt is very big on Niacin / Niacinamide to help with anxiety and depression. Does Niacinamide have a negative affect on methylation? I have read much that Niacin can slow it down.

    Based on my methylation results, could a Lithium deficiency be an issue? I have been supplementing at 10mg per day for a while with no good affect. However, I have read that doses up to 40 mg are safe.

    DMG or TMG or neither based on my methylation results? A lot of controversy on this one as well. Dosages?

    I have been living in survival mode for far too long, and I need to get 50% better quickly to get a job to keep food on the table. I am seeing a doctor in a couple of weeks that is a psychiatrist that specializes in methylation. I appreciate any help you might have prior to this appointment!

    Methylation results - bolded are colored red on my printout

    COMT V158M +/- Hetero
    COMT H62H +/- Hetero
    COMT 61 -/- G
    VDR Taq Tt Hetero = +/-
    VDR Fok FF C = -/- ??
    MAO A R297R +/+ T
    ACAT 1-02 +/- Hetero
    MTHFR C677T +/+ T
    MTHFR 3 -/- C
    MTHFR A1298C -/- A
    MTR A2756G +/- Hetero
    MTRR A66G +/- Hetero
    MTRR H595Y +/- Hetero
    MTRR K350A +/- Hetero

    MTRR R415T -/- C
    MTRR S257T -/- T
    MTRR 11 +/- Hetero
    BHMT 1 +/+ T
    BHMT 2 -/- C
    BHMT 4 -/- A
    BHMT 8 +/+ T
    AHCY 1 -/- A
    AHCY 2 -/- T
    AHCY 19 -/- A
    CBS C699T +/- Hetero
    CBS A360A -/- C
    CBS N212N -/- C
    SUOX S370S -/- No Support Needed
    SHMT C1420T -/- G
    NOS D298E +/- Hetero

    Thanks so much for reading!
  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @AimingHigh You've written a lot. I'll see if I can make a few comments...Your psychiatric symptoms seem to be well within the range of things we see clear as methylation improves, when B12 levels increase. Please watch the B12 vid I'm linking, it might give you great hope.;)

    Brilliant! Lucky you:thumbsup:

    If you have hi rT3, why are you coming off T3? I'd think this was a reason to be using T3. That's my situation. Unless you're just not low thyroid...

    I doubt if it was placebo. I've just created a compilation of Freddd info, in my signature. It answers many things that I can't. Hopefully you might be able to find some useful info there. Includes Freddd's opinion re Hydroxy. Also see section on B vits. Fred found, and my experience was same, that going to low dose Bs reduced need for potassium. I'd been taking high Bs for anxiety, but have been happy w/ low dose. And Ben Lynch advises B3 to slow down methylation when it's creating anxiety or other symptoms, so, Yes, it reduces methylation.

    TMG is cheaper, Lynch advises trying it first. But you need to figure it in w/ all the methylation supps, to not push things too fast.

    @zzz0r knows a lot about COMT.

    I've been v happy w/ low dose lithium, < 10mg. It apparently helps B12 absorption. Before you > it, I'd look first at your histamine situation. MAO++ means it's likely you have histamine issues. The 'Brain Allergy" vid linked is part of that. Also linking a few other histamine issues. Histamines can absolutely give you a range of psych symptoms. Rutin and mangosteen have been brilliant at reducing histamines for me. Also Vit C and Calcium mobilize it out of body. Royal jelly esp. for mast cell related histamines. You'll probably want to acquaint yourself w/ the world of histamines since you're MAO and experiencing anxiety.

    Okay, enuf from me. You're so lucky to be set to see a methylation MD/psychiatrist. :balloons:

    Diagnosing and Treating Vitamin B12 Deficiency‬

    ‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬

    I've been thrilled w/ Neuroprotek, developed by Dr. Theoharides If I wake up at 3AM w/ galloping mind, one of these quietens things down w/in minutes.

    The Many Faces of Histamine Intolerance
    Research has proven that one of the peptides in bee venom, melittin, inhibits the Lyme spirochete at very low doses. When the spirochete is inhibited it does not multiply and is then unprotected from the body’s immune system and to the other supporting therapies, remedies, and medications.

    Klinghardt: Autism, Lyme, Pyroluria

    Short Version (36pg) Pyroluria/Lyme protocol. From Powerpoint doc used during Klinghardt presentation: Lyme Induced Autism
  3. AimingHigh


    Thanks for the response Amho. From what I am reading, it appears that LO is more of a histamine antagonist than anything. It should be reducing the effects of histamine if anything. Is that what you were saying?
  4. leela

    leela Slow But Hopeful

    Couchland, USA
    Welcome @AimingHigh

    Have you read any of the books by Carl Pfeiffer? There is one you can download as a pdf called
    "The Schizophrenias" that is about a lot more than schizoid disorders. Very informative.

    Also, you could read about HPU/KPU in general (which is one of the things Pfeiffer talks about, as well as Klinghardt.)

    There is also a book with kind of a dumb name "The Mood Cure" by Julia somebody that breaks down in detail all the neurotransmitters and such
    in a very straightforward way.

    Though a bit dated, these might be useful resources when added to the already extensive research you have done so far.

    Finally, have you looked into mold as a trigger for some of these symptoms?
  5. AimingHigh


    Thanks leela. I have read some of Pfeiffer's work, but not this book. I struggle with his theories though. My functional MD has me on treatment for high histamine (undermethylation). Also, he tested my pyrroles (HPU/KPU), and they came back borderline, but I put my self on high zinc (about 150 mg per day) and p5p treatment (60-70 mg per day). I have also added in some other trace minerals. I seemed to do better for a few weeks, and then back to baseline. I'm just not sure about this.

    I have looked at mold. I don't fit the typical hyper allergic symptoms that comes along with mold typically though. I am pretty tolerant to foods and checmicals. I have had an allergy panel done by Genova that came back pretty clean too. I don't know though.

    Thanks again for taking the time to respond.

  6. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    Don't know what this means.

    Here's a great little questionnaire to indicate poss of pyroluria. Tests are unreliable. Tho you've added the main supps... Online questionnaire to suspect pyroluria
  7. AimingHigh


    That means Lithium Orotate actually appears to inhibit histamine. As an "undermethylator", I have higher histamine levels than most, so LO would actually be a good substance for this purpose.

    In regards to pyrroluria, I agree that the testing sucks. I have taken Zinc dosages up to 300 mg per day with P5P doses to 100 mg per day (in addition to supplementing some Manganese, Mag, Evening Primrose Oil, etc). Altough I do match up with pyrroluria symptoms pretty well, treatment for it has not helped my symptoms long term. It may be a puzzle piece, but not the whole story in my case.

    Thanks again for your ideas though ahmo!
  8. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    Oh, lithium. Have you actually eliminated histamine substances from your diet?
  9. AimingHigh


    I haven't focused much on the histamine piece accept to supplement methylfolate and other methylating compounds. My whole blood histamine at my last test was ideal.

  10. drob31

    drob31 Senior Member

    Wow, you sound allot like me, minus the social anxiety / depression. But all of the physical symptoms are similar.

    My hormones were played around with a bit which taught me some things.

    How are your estrogen levels? Low estrogen can be just as bad a high estrogen.

    How about your prolactin, and progesterone levels?

    Have you had a cortisol saliva test done? If so what were the results?

    I have read that it takes time for rt3 to clear from receptors. Also, high or low levels of cortisol will prevent t3 from working properly.

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