Diagnosis Unclear After 15 yrs

[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:

ADHD
depression
Generalized Anxiety
Social Anxiety
Bipolar II
OCD

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
depression
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
tinnitus
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!
Ryan

 

[ahmo]

@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.

I am seeing a doctor in a couple of weeks that is a psychiatrist that specializes in methylation.

Brilliant! Lucky you

I'm currently tapering off of sustained release T3 to help with elevated reverse T3.

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 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 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.

http://forums.phoenixrising.me/inde...methylation-mutation.20478/page-2#post-416021
Freddd: I would like to discuss this matter of schizophrenia and bipolar disorder. If we jump into our way-back machine and read up on the studies of liver extract concentrate, before b12 was misidentified for a Nobel Prize, we will see some never duplicated results. Based on what I read in historical articles, back in the 70s, the studies carried out were done in the mental institutions just as earlier studies for b-vitamin deficiencies were done. Women hospitalized for post partum depression (that is severe) were able to be sent home in a single day after administration. Schizophrenics were able to be sent home after three days of treatment with the extract.

Then there were two shoes to the disaster. First Thorazine and another major antipsychotic drug were invented. Then the sanctified by Nobel prize Cyanocobalamin totally failed to replicate the results of the liver extract in many studies besides high MCV.

I know of several people hospitalized who were quite hallucinatory and whatever else is required for hospitalization who have had a family member feed them, MeCbl and AdoCbl who have had the hallucinations stop within 48 hours and released within a couple of more days..

I and many with B12 CNS deficiency symptoms have had multisensory hallucinations, potentially including every sense, that are basically noise in the circuit, like static or digital scramble on the TV. I could smell the clam flats in my basement changing suddenly to hot linen and other less pleasant things. My sense of taste was similarly afflicted as was my hearing. So if I were so inclined I could have made it into anything. I made it into meaningless noise that pointed to areas of damage of some sort. They all healed. I could once again taste strawberries, odors were normal, not changed and strengthened in weird ways and completely random at times. The visual and auditory hallucinations went away. Some changed in days, some specific things took months.

Also, during healing for me and others, which was running many symptoms in reverse, volatile emotional changes were common.

The thing is the deadlock quartet, as well as containing the real human active cobalamins, carnitine, and human active folate, l-methylfolate and it does appear to replicate the entire spectrum of effects of the concentrated liver extract. Good luck.

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

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.
Neuroprotek http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html

The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044

http://www.histamine-intolerance.info/
http://hoshindohealingartsinstitute.org/lyme_treatment.html
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

http://www.youtube.com/watch?feature=player_detailpage&v=-z3kRDYcvhA

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

http://www.lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf

 

[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?

 

[leela]

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.
www.riordanclinic.org/ebook/The_Schizophrenias_Ours_to_Conquer.pdf

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?

 

[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.

Ryan

 

[ahmo]

it appears that LO is more of a histamine antagonist

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...
http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria

 

[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!

 

[ahmo]

Oh, lithium. Have you actually eliminated histamine substances from your diet?

 

[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.

Ryan

 

[drob31]

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.

 

[queenbeetv]

Hi Ryan, I don't know if you still go to this site or not, (I think you posted in 2014). Well, a lot of the things you seem to be having problems with are related to CBS mutations. The CBS you are positive for (hetero) is CBS699 and it causes big problems with suflur and thus phosphorus buildup, which then causes soft tissue calcification (all your stiffness issues). This mutation also makes a person have toxic ammonia buildup in their brain due to the excess sulfur breaking down into ammonia and this then can cause excess stress hormone release which can cause anxiety and anxiety related disorders like OCD.
In addition, this mutation makes a person depleted in magnesium and B6 and without either, you can't make dopamine (neurotransmitter of happiness and motivation) correctly and you cannot make serotonin (neurotransmitter of calmness and contentedness) correctly, so it will not be surprising that you would suffer anxiety (lack of serotonin) and depression (lack of dopamine)
CBS 699 mutations make the body unable to properly metabolize and excrete sulfur, so high sulfur foods should be avoided
The high sulfur content in the body makes the body absorb more phosphorus, so there will be excess phosphorus in the soft tissue cells, so high phosphorus foods like coffee, black tea, green tea, all sodas, oatmeal, fish, shellfish, eggs, legumes, soy products soy sauce, peanuts, pea protein, nuts (except for walnuts) should be avoided.

Also, the high intercellular phosphorus, makes the cell too acidic and then in trying to save the cell, the body leeches calcium from the bones and puts excess calcium (an alkaline mineral) into the non bone cells to buffer the acid condition caused by the excess phosphorus. This causes Soft Tissue Calcification (Read The Calcium Lie: What Your Doctor Doesn't Know Can Kill You by Dr. Robert Thompson, also read Calcification: The Phosphate Factor in Aging and Disease by Mark Mayer.

This soft tissue calcification will cause joint stiffness and muscle contractions/spasming and pain, as calcium raises the electrical firing of the cells to a too high level so they get oversensitive. This also make the brain more emotionally oversensitive and also oversensitive to all types on stimulation (light, sound (the tinnitus) etc)

See Dr. Jockers website for CBS mutation diet.

CBS is a much worse mutation than MTHFR and needs to be treated first before even worrying about MTHFR. CBS 699 is the worst SNP. Lucky you are only hetero CBS699. I am homo CBS699 and I have all the problems you do if I do not stay on a low sulfur, low phosphorus, low calcium, low vitamin D, low zinc diet. Any of these will cause me immense pain, bad anxiety and irritability and crushing depression

Here is the mutation I copied from your list.
CBS C699T +/- Hetero

So basically, you should avoid foods high in sulfur, phosphorus, calcium, vit D and zinc. And take a well absorbed magnesium like Trace Minerals Research Mega Mag ionic magnesium chloride. It tastes bad so start with 1 dropperfull per day in a little juice and gradually work up to the USRDA of 400mg per day by taking 2 dropperfulls in AM and 2 in PM. Do this slowly because the magnesium starts flushing the excess calcium out of the soft tissue non bone cells and if you do it too fast, you could have muscle cramping etc as the calcium works its way out of the cells and into the lymph system to go into the thoracic duct to be cleared by the liver and the kidneys.

After getting set on the magnesium, a good well absorbed B complex vitamin with methylfolate instead of folic acid should be taken. Emerald B Healthy Co Enzymated B complex with methylfolate is a good brand. I like it a lot, but I only take 1/8th of a capsule per day (any more is too much for me) instead of the recommended 2 capsules per day.

My mom is a hetero CBS 699 mutant like yourself and she is able to take one per day, so that might work for you, but with anxiety, it is always best to start low and slow and so maybe you should try less than one capsule like I do. If I take one full capsule, I can't sleep at night. So what you do is open up the capsule and use the smaller side as a measuring cup and take about 1/2 of that side of the capsule as your daily dose to start. And I would take it in the morning.

anyway, I hope you see this. When I saw that you were CBS 699, I thought to myself, no wonder. Cause if you are not on a low sulfur, low phosphorus, low calcium, low vitamin D diet, I am not surprised that you are having all the problems you are having. As I said, I was having similar. CBS sucks and people should get their genes tested and not have children with the mutation because eating is a fun part of life and if you want to stay alive with this and not have major health and mental issues, you have to be really careful about staying on the low sulfur etc diet.

 

[Valentijn]

Well, a lot of the things you seem to be having problems with are related to CBS mutations.

I'm afraid you have been badly misinformed. Everything you are saying about CBS is completely unsubstantiated, and most of it is directly contradicted by the existing research.

CBS C699T is a very mild and beneficial upregulation, which is associated with decreased risks related to heart disease. When +/- it likely has extremely little impact, if any at all.