success ☼ JanCarol: Reboxetine first, then lithium

[JanCarol]

Two words:  powdered aloe.  All of a sudden I no longer have fear about control of my bowel.  The aloe is anti inflammatory and tones the bowel (and other things, too - I have friends whose tumors have shrunk, depressions have lifted, joint pain eased - from using this stuff).  My friends (parents of one of my karate kids) manufacture it, all organic, 10x concentration, 100% pure. 

 

How did I ever get along without it? and 

 

Why did it take so long to find it?

 

It's amazing how grumpy I'm NOT when I'm not ruled by my bowel and its nasty habits anymore.  I get to drive the body again, and even the mood somewhat.  

[JanCarol]

Okay, so the aloe is not perfect, I still have problems, I still have to avoid wheat and go easy on the onions. But it's still so much better than before!

 

I've been kind of pampering.  Hiking.  Spa-ing.  And more to come, a massage and a vibra-saun this week.

 

Got the last decrease in Reboxeting to 1/2 mg. 

 

I hardly know I am on psych drugs at this point.  But I suspect I can get better from here.

 

I am having some symptoms, not free of them yet.  Stupidness.  Where my brain just farts and I lose what I was thinking / doing / what word I was going to use / going / etc.

 

Maybe this is related too:  strange smells, of cigarette smoke.  Of poo.  Always at the house - it smells fine when I am out and about.  So maybe the smells are real, and misinterpretations (for example, the cigarette smoke could be a perception misinterpretation of woodsmoke from a fireplace, and poo smell could be something in the kitchen (or plumbing or walls) gone wrong.

 

Or maybe it's just that I didn't smell anything for years?  And it's all out of whack as I get it back, the brain doesn't yet correctly interpret the perception.

[JanCarol]

Saw the Pdoc yesterday, reported irritability - more like impatientness.  She tried to goad me to see if I was anxious about hubby's cancer, but all I could say was "I'm concerned, I'm very concerned."

 

She approved another taper, but after the Rebox finally goes away.

 

Found 2 videos on TED of Dr. Ben Goldacre talking about what an abysmal failure Reboxetine is.  I put them on disc and took them to the Pdoc, telling her that it addresses Reboxetine, and methodology and the troubles with clinical trials as done in todays world.

 

I am more impatient, I do remember this from before - it's a selfish thing, all about me, "how dare you do something that gets in the way of what I'm doing?" or "how many times do I have to tell you?  Why should I even talk at all, if you do not listen to what I am saying?"  (i rarely see evidence that he actively listens to me - I am always an interruption, a distraction from what HE is doing.  Hmmmmm...

 

On the other hand, my driving is very sedate - while I still cuss at people who do incredibly stupid things (not just stupid things but INCREDIBLY stupid things) in traffic, I'm not invested in it.  I don't need to pull a face or shake a fist, though sometimes my jaw drops onto the pavement and I must pick it up. 

 

I have NO patience on the telephone, I'm aggravated with people calling my cellphone.  I don't even like to give the number out.  I gave out the number to someone who cold called my home phone the other day;  I asked that they NOT use it except if they couldn't reach me at another number.  What do they call first?  My darned mobile!  And I'm in a shop or something and they think they are going to SELL me something?  I know that a huge chunk of the world deals with everything through the mobile phone, but I do not.  I can't hear on it, it interrupts what I'm doing, I'm very impatient on the mobile.

 

I'm often impatient on the home phone, even though I have a comfy headset and can hear fine.  What is it with these calls from "Microsoft about your computer, ma'am?"  They don't listen to what you say and it's damned hard to get rid of them - you need to do something or they will call back again tomorrow!  

 

I do remember a simpler time, only I wanted it more complicated then.  Now that I want a simpler time, it has become the complicated I wished for.  

[JanCarol]

In addition, I seem to be having more physical, orthopedic pain.  Either the lithium blocked off some of that, or numbed me to it, or I'm just a lot older than I was when I started the lithium.  I seem to have lower tolerance for impact, certain stretches, etc.  People forget, because I "look" normal (don't walk with a cane or anything) and am in karate - until it's time for a throw or something then I have to say, sorry, cannot do that.  And I worry that they think I'm being wimpy, when really, I'm just keeping myself from getting injured.  That's why I felt I had to quit the boot camp.  That, and the emotional stress of not being able to do most of it, when others were.

 

So, irritability, or impatience, and pain.  Knee, back, neck, head.  Some of the pain could be from the fact that it's colder now, and we had no head in the den (where the computers are) for 2 weeks.  That tends to increase muscle tension.

 

I go to see the "Integrative Medicine Doc" next Wednesday.

[Sarabellum]

*hugs*

 

I'm sorry you're having irritability my friend. I understand what that's like. I've gone from irritability to just plain anxiety.

 

Hope you get some relief soon.

[JanCarol]

Thanks Sarabellum.  My anxiety is in good shape, as I'm listening to my friends in Israel with the missiles and the bombs and the sirens and the fear of not taking a shower lest you be naked when the siren sounds.  By comparison, my anxieties are insignificant.

 

May your anxieties find some stillness.  I'm really happy with the magnesium and niacin.  This is more balanced than I've felt in a long time.  In fact I wouldn't even call it "irritable," just "impatient.  I get impatient when I have to repeat myself or feel I'm not being heard, or that people don't listen or care.

 

Odd, how people seem to care more here, than in person.  Either I'm really unlikable, or the internet is an illusion.

[Meimeiquest]

We listen to you, but only on our terms . Good luck with the doctor Wednesday!

[JanCarol]

Well, here's the thing.  Yes, I'm pyrroluric.  But I've been treating that via symptoms, with zinc, niacin, B6 and magnesium.  And I'm an undermethylator, but I've also been treating that with B12, B6.

 

The doctor told me to DECREASE my zinc, as my copper is low (undermethylated) even though I'm pyrroluric (low zinc).  And because of the undermethylation, I am to stop taking folic acid (which I was taking for cardiovascular - they tell EVERYONE to take it.  Wrong!)

 

She did not tell me to switch off the fish oil (supposedly I need Evening Primrose Oil instead?) nor did she say anything about manganese.

 

She told me not to take ANY copper as it was easy to go toxic.  Funny, I found very little on the net about supplemental copper going toxic - and my USA doctor / friend told me to take copper because I'm taking so much zinc.  So I'm going to listen to both doctors and take a tiny amount of copper once a week, and decrease my zinc slightly.

 

And investigate the EPO (will it take care of my joint pain, too?) and manganese.....

 

I see her again in a week.

 

If what I understand is correct, I've adjusted my own supplements, based on symptoms, and am doing my own orthomolecular treatment.  The doctor is just confirming that I'm doing a good job and making some minor corrections.

 

If only I'd known this 20 years ago!  That some B6, Niacin, magnesium would help so much!

[JanCarol]

I feel I am slipping somewhat.

 

I have reduced the zinc and taken 1 copper tablet since I saw the Integrative Doc.  I haven't reduced it as much as she said, because she said to taper.  

 

One of the items I read about pyroluria is to "increase vitamin B6 until you remember your dreams upon waking"  I've been dreaming, but the memory doesn't stick like it used to when I was younger.

 

Anyhow.  Sadness.  A bit moody, a bit fearful.  I don't want to "go out" even if that is for something pleasurable, like a massage.  THING IS, when I went to the massage, I found it pleasurable, unlike my anhedonia days.  Who knows, maybe I would even like sex again (doubt it, but feeling pleasure is a start).  

 

I cried last night about my cat, the greatest cat of my life.  She has been dead for 9 years, and I remembered lying with her as she died.  And it made me want to cry.

 

Then I was torn.  "why am I crying over something 9 years old?"  (I'm getting teary as I write about this.)  Then:  "I did cry a lot about it at the time, so it's not like I'm crying over an unmourned trauma."  THEN, "I'm not depressed, I'm not going to cry over this for days, maybe it is a release for other traumas that I have not dealt with, and it is easy to cry about the cat, but difficult to cry over the death of my father," (for example).  So I let myself cry.

 

Getting to sleep was hard, I still don't have the diet I need to have, it's too easy to eat things with wheat emulsifiers in them.  So my stomach was upset.  I ended up needing a hot wheat pack for my tummy, taking a laxative to get rid of whatever was disturbing me (don't worry, I don't make a habit of it), a blindfold to relax my eyes closed, a pillow between my knees to keep my hips and knees from hurting, a teddy bear to keep my shoulders from hurting, pain pills so that my neck didn't keep me from hurting, and breathe-right strips to keep my nose open.  Oh, and then MP3 player with earbuds in my ears so that I wouldn't be disturbed by the barking dogs.  

 

I remember when going to sleep was so simple, you just hit the bed and waited for sleep to come (and it did).  Now I feel like I have to be mummy wrapped and cushioned before I can get to sleep.  I saw 3 am, then 4, then 4:30.  After the pain pills I finally slept until about 7.  Not very restful.  Maybe that's why I feel unsettled today.

 

I'm wondering if I need to go back on the NAC.  Shame, I'm all out.  I hate to add that in while the Doc is adjusting my zinc, copper and B-vitamins.  I read good reviews of what she does, I should trust her.

 

And oh, I'm going to text my Doctor friend in the US with the words "pyroluria" and "undermethylation" to see if she thinks they are "real" or "naturopath /chiropractor" made up stuff.  It would help me to have her confirmation I think, as I'm swimming in uncharted territories for me, and I'd like to believe there is a shore.  Somewhere.

[Meimeiquest]

Hugs going out to you!!!

[Meimeiquest]

Would you like to share what your KPs (pyrrole test number), zinc, and copper were?

[JanCarol]

Thank you Meimei!  

 

I must remember 3 steps forward, 2 steps back, is still progress!  I've been so wave-free during this whole process so far I was beginning to think it was going to be like walking out of a deep lake, getting brighter with every step.  Now, maybe, closer to the surface I am more vulnerable to waves.

 

Partly, I have mixed feelings about this orthomolecular stuff.  True, it's much more helpful and less harmful and destructive than standard psychiatry.  But there was a part of me which was learning, delving, seeking to uncover, to unwind and untwist some of the kinks that have been caused in my personality by trauma.  Again, I am more fortunate than most.  My trauma is more about peer rejection, parental restriction (and repression) and when I think about rape, the first image that comes to mind is of my brother, 6 years older than me - holding me down with my legs over my head so that I couldn't move.  It *wasn't* rape, but the fear is the same, and later became associated with that feeling.

 

When Horvile Harwath (sorry, I'm bad about his name) asks me to find the ONE trauma which shaped me as an adult, I cannot find one.  I find a million small traumas that bent me this way and that.  Like a tree which is near a tree struck by lightning, and another tree falls, and it breaks and bends things, then the floods came, and the fungus and grubs, a million small traumas.  The trauma didn't always happen to me - but we all feel it, don't we?

 

So anyhow, as I've been looking at the trauma in people around me, and holding it up in a mirror to myself, and trying to learn compassion and empathy - and deepen in caring and love - and look at myself and see how I mirror them, what I can learn, where can I forgive, where can I let go.  To truly examine these things and address them.  Because I WANT to get better, I don't want to live like that anymore, I want to walk away.  That doesn't mean I won't have to do maintenance to keep from walking back into the lake - but it means I understand better the shores of the lake, the temperatures, the winds, the currents, the shape and dangers of the bottom of the lake.

 

So you see, to be working on all of that, and then to be told by a Doctor, "oh, it's just your oxidation cycles, your zinc and copper, your under methylization.  In other words:  it's just the chemicals in your brain:  I want to scream!  And it's making me think about things in my life.  

 

The time at the 7th Day Adventist school, where I was vegetarian for a year.  At the end of the year (also getting accustomed to menses) I was malnourished.  NOBODY ELSE in the school was malnourished.  But I was.  And the cure - prescribed by the Seventh Day Adventist Hospital - which was more alternative in those days - was B-vitamin IV's (what a rush!).  The permanent dark circles under my eyes that made me think I was a Russian child. (come to think of it, all those Russian children in photos growing up - could very well have been peeing pyrrole!).  Mom's homemade bread (B-vitamin heaven!)  Our garden of fresh vegetables, Mom's skill and concern with nutrition and composition of the meals she served.  Every meal was balanced.  I started getting stroppy about church and the strictures of my family as I reached teenhood - and started "counseling" then (there was an incident, I won't go into it).

 

So years - decades - on my own, at what point did my diet change to tip me over the edge?  Or was it that I always was pyroluric, and it just didn't stand up to the stress of my divorce, subsequent rejections, and unbinding that caused me to explode?  

 

Obviously, it's a blend of trauma and chemistry.  And I need to work on both.  

 

And MeiMei, I wasn't ignoring your numbers request:  the cat was sitting on the numbers until just now!  

 

Keep in mind I'm taking 100mg of Zinc daily before I take these tests.  I was doing a number of things, activating magnesium, and trying to keep my hair from falling out when I picked that "high dose."  The dose I read about was 200mg, so I figured my choice was conservative.

 

Copper:  10.8 L umol/L   (BELOW LOW)

Zinc 26.2 H umol/L (OVER HIGH)

 

So the first thing is to taper off the zinc, she wants it down to 50 mg/day.  But I worry that my pyroluria will soar when I do that because:

 

Urinary Pyrrole HPL (ug/dL) Normalized:  17.6  which is "low elevated" on the lab's charts.  If it goes up, it will be "elevated elevated."  I've been accidentally treating this for treating other symptoms - and taking zinc which makes it better.  All by intuitive & careful research on the web, & the knowledge I learned from Mom & my own studies in nutrition.

 

Caeruloplasmin (how well I transmit copper) is 0.21 g/L.   still normal but at the very bottom of normal.

(this could have been a cause of my retinal gel separations)

 

Homocysteine 5.6 umol/L is apparently robust, which indicates good veins, and no B & pyridoxine deficiencies, and no obvious renal failure.

 

DHEAS 1.5 umol/L is low normal., she said affirming cardiovascular health, and not an immediate problem.

 

One shot of cortisol (the big multi-spit test isn't in yet) was 286 nmol/L which is pretty chill.  Not too low, not elevated.

 

B-Histamine was 0.5 umol/L which is right in the normal of normal (surprise!  Why have I been taking antihistamines all these years?)

 

So there you have it.  I've posted mine, Have you posted yours?  

[Meimeiquest]

Well, first thing, I agree with you 100% on the emotional component. I don't think they are contradictory at all. Dr. Walsh speaks highly of counseling in videos I've seen and in his book. Our mind somehow transcribes our thought life into our physical body. Stress is known to be a huge factor in epigenetics and of course in adrenal hormones which affect so much.

 

I will post something on my thread about my tests. I am a little concerned about your zinc. Also having pyrrole disorder, I am tapering (right word?) up to 90mg, and that will probably be only until my six-month retest, maybe even a shorter time. The trace metals all affect each other, so balance is a big deal. To my understanding, which leaves out a lot, the zinc and B6 don't fix pyrrole disorder, they just compensate for what the body is losing because of it. To fix it, you have to resolve whatever is causing the oxidative stress...somehow that is what greatly aggravates it. I read somewhere that the actual defect is in the liver, that it is not metabolizing the kp properly, which can be a genetic defect, or just an overwhelmed liver. I have lots of questions for my next appointment; when I was there they guessed that I was severely undermethylated, but that was not the case, so we talked about the wrong things.

 

So what blood test indicated you are undermethylated? Mensah uses histamine, but that must not be the case with your doctor. Alternative medicine is scary in its own way, but compared to traditional medicine it seems much safer albeit weird sometimes. But after my post-L-theanine throwing things at my husband, I realized doing nothing was just not a viable option.

 

I always enjoy your writing, even when it is about sad things.

[JanCarol]

O.  My.  I got my cortisol spit test back.  And my cortisol is low, low, low, it's a wonder I get anything done at all!  Only at 8 am did I have "normal" cortisol (when I am asleep). So I can be patient with myself.  If it feels like I am running out of steam, it's because I am.

 

My US Doc recognized "methylation" but hasn't said anything about pyroluria yet.

 

and now, for your crying entertainment:

 

https://www.youtube.com/watch?v=Lp3pFjKoZl8

 

How did I get it to imbed before?

 

I recommend full screen viewing anyway, to get all the stats.....

[Meimeiquest]

Wow, I hope that you can get some help and rest for your adrenals! Loved the video!

[JanCarol]

MeiMei I don't have much time this morning, but I wanted to thank you for your thoughtful response - I've been thinking about it since I read it:  about pyrrhole is caused, it is not the cause.

 

Right now, I think we are just balancing it, and think about cause later.  I've carefully managed my stress for about 10 years (as much as you can), and had "tapered" (you're right, that's weird) up to the level of zinc I'm on about 6 months ago - I've been on it awhile.

 

Interesting, I made an error, I was supposed to decrease it, but when I did my fill of my trays I made a mistake, and there's still 25g too much in there.  Almost as if my body didn't want to let go of it.

 

Additionally, WITHOUT KNOWING IT, just by going on what people say in here, coupled with research I'd done on the web, I was already CORRECTING much of the pyrrhole prior to going to this integrative Doc.  Now it's a matter of fine tuning.

 

I'll be sure and look at your numbers soon, I'm off to lunch and acupuncture, a fortnightly routine with a friend.

[JanCarol]

Acupuncture was WONDERFUL - gosh I love that woman!  If I were so inclined I'd try to marry her, except she's taken and I think her adult kids would have a fit!

 

Okay, to answer MeiMei's question:  what test showed my undermethylation status.  Let me see if I can do this (it's so complicated!)  It wasn't histamine, my histamine was normal.  It wasn't homocysteine, also normal (in spite of my high cholesterol)  My DHEAs wasn't shocking, especially since I don't have any ovaries anymore for making estrogens.

 

By elimination it must be my low Caeruloplasmin?  I'm guessing here.

 

I looked at the full report of my cortisol.  Adrenal fatigue, adrenal fatigue, adrenal fatigue.  That makes so much sense.  My acupuncturist agrees.  It's a wonder I get anything done.  My Doc seems to think that if only I could change my delayed cycle sleep patterns. Her suggestions were to move my sleep by 1/2 hour at a time, for a week, then shift again.  Well duh.  I've had this problem for over 20 years now, you think I haven't tried that?  She said get a dog.  I don't want a dog, and hubby definitely doesn't not like dogs, and the cat - well.  

 

So I look at their suggestions.  Ah.  makes sense.  DHEA supplementation in the morning.  25 mg at first, then up to 50 mg if I tolerate it and need more help.  Only. 

 

DHEA is illegal in Australia.  Controlled substance.  It is illegal to buy or carry without a permit.  I was thinking, maybe I can't mail order it, but the rules are different for carrying it across the border?  Nope.  Illegal to carry or import without a permit.  I looked at the permit application.  It asked for my license number, as in, the license that gives me the right to import DHEA.  Like being a medical doctor, a chemist or something.  I talked to the guys at the lab, one guy said he carries it through Customs - I told him he might want to think twice and check the laws again because if he ever got caught, it could be handcuffs!  They might just take it away (okay fine), but you don't want the handcuff treatment.  It is illegal.

 

Farking Nanny state!  I can get 1250 tablets of 25mg for US $44 from one of my US vitamin companies.  Wanna bet what the price is for something similar here?  I'll bet I pay $44 for 30 tablets.  And here's where I am at.

 

I'm nearly in tears looking at this, I'm on the ginseng and brahmi to support my adrenals, but I believe (I don't know it but I believe it) that the DHEA is going to be essential if I have any hope of getting out of bed in the morning.

 

Here's an Aussie phrase for you:  I've chucked a wobbly.  That means I'm losing my marbles, losing my cool.  Here's this report from the lab saying I need DHEA, and it's frigging illegal!

 

So - even though pDoc wanted me off the Reboxetine last month, I'm still on a tiny amount.  And no lithium tapers for me.  

 

I'm too volatile.  I have mostly a good life but I'm too volatile.

[JanCarol]

Briefly, I'll try for detail in the morning.  That is, tomorrow afternoon, which is morning to me.  (damn delay cycle!)

 

I was feeling volatile.  I bought a lithium bracelet.  The stone is lepidolite.  Contains lithium.  It's a newage, er, new age crystal thingy.  But - before you roll on the floor laughing at me - we rub magnesium cream and gel into our skin.  We absorb fluoride through the shower.  We wear copper bracelets for arthritis, and it turns our skins green.  So why not wear a rock which is got lithium.  I'd be sure to get a tiny amount for sure.

 

The only thing is, it is a heavy bracelet, I can't wear it all the time.  Maybe if I just promised myself a couple of hours minimum each day.  Feeling the heavy thing on my wrist is calming, too.  Like "tying me down."

 

I don't "believe" in the mystical calming properties of it.  But I can say it feels good.

 

* * *

Apart from that, with the wars, missiles, kidnappings, and aggression in the world, I'm thinking it's actually healthy to be depressed in an unhealthy world.  A la Laing.

 

I'll try to do better tomorrow. - I went to a naturopath who hooked me up to a galvanic skin machine.  OMFG.  I'll tell that story.  G'night.

[mammaP]

Can't wait to hear about the skin machine Jan, sounds interesting  ! 

 

I'm not laughing at your lithium bracelet, I have some amber beads and intend making myself a bracelet

because amber is known to help with pain.  I believe these things were used for thousands of years for

medicinal purposes and were frowned upon in recent years because it was not understood how they worked.

I think a lot of the time they were hailed as miraculous or mystic because their properties were not understood.

[JanCarol]

Hi Mamma!

 

They sell amber bracelets and necklaces at the Chemists and Health Food Shops here - for anti inflammatory properties.  Especially for babies and teething, but also for adults.  I seem to remember from my Northern Studies that amber and jet is a sacred combination - from the earth and the sea?  I can no longer remember other than they are not exactly stones, but resins?  That both have electrostatic properties?  Well, enough mythology - our Chemists sell them for their anti-inflammatory properties.  I can say that with certainty.

 

(our chemists sell some woo, too, but sometimes they actually recommend it, as well.)

 

OKAY, the naturopath.  This is why I will never consult a naturopath for real.  This woman is a friend, a mum of someone in karate.  She has a license but is still attending naturopath school.  She bought a machine.  I don't know the name of the machine, but she is all excited about it (and it looks expensive - like "payment plan" expensive) and wants some subjects to try it out on.  I'm a natural subject because I've had all these blood tests run and can "confirm or deny" her readings.

 

The probe was the size of a compact glasses case - you know those compact readers from the drugstore? It had 2 sections, left and right, separated by a rubber gasket.  I'm guessing that those are the two halves of the circuit, because when i read about galvanic skin testing online ("electrodermal screening," "ZYTO", "Vega", "EAV," "Bio-energetic skin response" etc.) there are always 2 parts to the probe, or 2 probes.  

 

Sometimes one probe contains the allergen and you use the galvanic needle (gauge) to test for allergies.  This makes sense, like a lie detector.  Sometimes it is used for an interview, "do you need 50 milligrams of zinc?  75?  100? and watching the needle jump you can determine what the subconscious "knows to be true."  I get this too, it's how the Scientologiests use their e-meter to get to the truth of your darkest secrets - and likewise how a lie detector determines truth vs. lies.  I get it.

 

But this is unlike any of those.  I held the probe in my right hand for 1-2 minutes, and it took a "reading" of me.  (and I wonder, if I'd held the probe in my left hand, would I get a different reading?)  A bunch of colored lines came up on the screen - but she didn't stay on those (I wonder what they were?)  Then we got to the lists.  I'm sorry I'm doing this all from memory, she didn't give me a printout.  It covered 29 different systems, like musculosketetal, endocrine, cardiovascular, pulmonary, lymph, vitamins, minerals, allergies and heavy metals.  In each one, it had about 15 - 25 things listed.  For example under cardiovascular, it had blood thickness (mine was thick), artery strength (mine were strong), artery elasticity (had that too).  But get this, they didn't just say "strong," each of these things had a value listed, for example, Normal range is .011 to 2.65 and my level of artery elasticity was 1.55.  To 3 decimal places!  (numbers are not actual, I cannot remember actual numbers)

 

How the eff does a galvanic skin response tell all of that?

 

It said that my zinc was fine (blood tests said high, but I've adjusted my dose) copper was normal (my blood tests say my copper was on the floor, but again, I've taken a bit of copper since then).  It said my sinuses and lungs were weak (that fits) but that I was not allergic to animal dander or pollen (my greatest allergies) but that instead I'm allergic to detergent and hair dye (alrighty then).  It said that my niacin (I take 2000 mg a day) was depleted, but that my B12, B6, were okay.  My Calcium and magnesium were through the floor (wtf?  I take a ton of both, just not at the same time).

 

So it was stunning going through all of these numbers and "normal ranges" and I have no way to know how those "normal ranges" compare to blood tests.  Were they measuring mg/L or what? 

 

Very mysterious.  What is most mysterious to me is that the machine - HOWEVER it works - wasn't TOO far off.  I'd love to see the circuitry in it to see how it "makes decisions" based on what "criteria".

 

The "official explanation" is something about "energy along meridians"  determining weaknesses and strengths.  Right.  Would you like a side of woo with that?

[JanCarol]

PS.  No tapers for me.  I'm not traveling very well.  Depression, low energy, too much pain, too much IBS.  All symptoms of pyroluria, but these are being addressed.  Unfortunately, they're being addressed by DECREASING my zinc.......but okay.  Plus we are getting ready for international travel later this month.  Not the best time for any changes.

 

Waves followed by waves.  The wars aren't helping, I have friends in these war zones.  We need an emoticon for waves <waves>   could be a hand waving, or an ocean wave.  God knows we have enough of them in here!

 

Next topic:  my marvellous compounding Chemist!

[Meimeiquest]

Wow, so much stuff. I have been waiting for a clear head to write, but that may never come. I did another benzo cut and it felt like benzo cuts used to feel. I am sorry you are feeling so very symptomatic right now, on top of the war stuff. It does feel like the world is coming unravelled. And I am so impressed how you hacked that pyroluria!!!

 

You are right, I'm taking three versions of B6. My understanding (that means lots of qualifiers!) is that ceruplasmin (sp?) is the protein that carries copper...it is free copper that does bad things.

 

Given the fact that you may or may not be able to take DHEA, I took it years ago and it did nothing. I think the key to adrenal fatigue is to find out the cause of the adrenal overstimulation and fix it. I think mine is food allergies even though I don't have gut symptoms. A few years ago I had official IgG testing, was allergic, among a few other things, to goat milk. I drank goat milk regularly when I was three, and had a lot of exzema then. So it goes back a long ways. (Google zonulin and Kelly Brogan sometime if you want to depress yourself). In the past, our early marriage, probably stress. And now I have a ton of adrenal stimulation from withdrawal. Also, excess copper is highly reactive, causing oxidative stress/inflammation. Mensah, maybe because that's all they know, is not interested in cortisol levels...they just say "you probably have adrenal fatigue, but we just need to treat the cause." But I think they are very weak in gut issues, "just take a probiotic once a day."

 

Well, I will close my foolishness here, but thanks for sharing your story, hope things get better.

[JanCarol]

John Gray, of Venus and Mars fame, claims that while depressed, eating sugar depresses the lithium in the brain.

 

This is the first I've heard of "lithium depletion."

 

It is the theory he uses, or the defense of his recommendation to use lithium orotate.

 

What're your thoughts on it?

 

https://www.youtube.com/watch?v=JtCiA95dzHI

 

He also says that we need the lithium to make serotonin.  Is he talking out his arse?

[JanCarol]

Thanks MeiMei.  When I read I could grow a moustache from taking Dhea, I thought.  Hmmm.  Maybe not the one for me.  Maybe pregnanolone?  Does nothing for adrenals, but helps other things.

 

I will google the story.  Adrenal fatigue.  They keep wanting to throw "adaptagenic herbs" at me. Geez, I'm the herbalist here.  (well, a hobby herbalist for 30 years.) But they keep finding exotic ones.  Like Brahmi. 

 

Causes?  Well, the gut is a wreck.  Yes, pre and pro biotics.  They''ve got some fancy pricey stuff here - I don't take that, I don't like powders, and too much money is too much.  but I've got that covered, and you're right.  They don't even ask about fiber.  Just prebiotics.  ONE told me I needed to take Slippery Elm.  I already am.  (hacked, again).  But causes?  Ongoing stress?  Other than feeling unheard, unsupported (except by professionals).  

 

I can share everything with hubby, but I"m not sure how much gets in.  And he doesn't have a clue "what to do" (men like that doing stuff). So sometimes he can't really hear it.  Among friends I can share bits and pieces, but I feel I have to be careful not to be overwhelming.  Aussies are a sensitive lot, they like things quiet and if not orderly, polite.  Not as polite as Canadians, but close.  Big, loud, thrashing Yanks can be shocking.  My normal self is a bit overwhelming here.  If I started going manic....would even hubby be able to handle it?  

 

So my stress is that it's in my court, it's up to me to prevent disaster to the best of my inexperienced ability.  

 

Another stress may simply be the fact that I have no ovaries, no thyroid, and no parathyroids.  That could throw an endocrine system into all kinds of crazy.  That's why the DHEA was so appealing.  A proto hormone to kick start my world.  Also, besides the moustache, the studies on DHEA for exhausted adrenals in women are inconclusive. 

 

I'm sorry the benzo wd feels like a benzo wd.  Someday we will see the sky again.  Truly - I got a big glimpse of it for at least 2 months.  It's up there, waiting for us to lift our heads and look.

[Meimeiquest]

Well, lithium is actually an essential mineral, I think in the order of 2 to 3 mg per day. www.nancymullanmd.com. Some people have messed up guts and don't absorb it properly, some lack the enzyme to absorb. They call it "balancing lithium." Dr. Mullan is in Amy Y's court. I would love to be deciding if I should stay on a bit. I could see 5 mg.

 

Yes, not having anyone who "gets it" is very hard. Wearing a mask of attempted normalcy. But I have to give my present husband ( same husband, but he is a better version of himself) high marks for trying to understand and to help, although he is stressed too. But a stroke, no matter how mini, adds a whole new dimension...even if he can get it, he then has to be able to show that he gets it, which can't be easy. And the cultural divide...no matter how nice Aussies are (and they are).

 

I have been studying female hormones vs. stress hormones a bit, particularly www.larabriden.com. More than one source says progesterone is built off cortisol, so if you use all cortisol up as cortisol, you will be deficient in progesterone. The adrenals are supposedly able to compensate for the loss of ovarian hormones if they are healthy. And missing organs is huge, huge, huge. Oh, it's complicated, but I think we are ahead of our care providers in putting the pieces together, even if some pieces are pretty crooked. And the million dollar question...when is it best to let the wisdom of the body reset itself, and when to replace things that are low.

 

I assume you are on vitamin C? I'm on 2 grams (!). Orthomolecular docs love it, including for adrenals.

 

Re: sugar...I think it gums cells up, glycolic end products put simply. Lithium makes the membranes more flexible. Like I know .

[JanCarol]

Thanks MeiMei!  Great resources, too (more study . . . )

 

What you say about progesterone matches what I heard about pregnenolone, that it's the precursor to estrogen and progesterone and other hormones (like I know it all?  nope!  guess again!).

 

And it ties into the GABA thing.  I took GABA, can't say I did well or not well on it.  Kinda like nothing.  But perhaps the pathways are what's fried, not just the GABA.

 

And oh yeah.  TONS of C.

 

At least my lithium bracelet left a blue stripe on my wrist.  Either that, or it was dyed.  Or maybe it cut off the circulation to that part of the skin?  

[JanCarol]

LOL am I silly or what?  "My lithium bracelet left a blue stripe on my wrist."  Well.  This shows to go you how science REALLY works.  When I said that I didn't take into consideration the tibetan silver bracelet I was also wearing at the time, which is not very pure silver, and has some base metals in it, like copper and maybe tin (hopefully no lead!).  

 

The stroke was not "mini" by any stretch of the imagination.  It was a major stroke, took out a piece of brain the size of a golf ball.  But it only affected speech and mental function.  He could walk and talk but reading and writing and speaking was a challenge.  And while he knows he has had a traumatic brain injury, the prospect of finding further help (he had an excellent rehab, got 95% of it back, but those of us who know him can see . . . ) is not even on the radar.  And he's slipping, I know it.  He doesn't have names for things, he tells me things and I don't know what he's talking about until I figure he got a noun or verb wrong.  It's stressful, for him, for me.  There is help - but he doesn't have much left over after trying to survive a verbal, written, day at work.

 

So I've been depressed, right?  I went to an emergency acupuncture this week, and will take another extra one next week.  It helped immensely, but I can't say how.

 

What I want to talk about today is my psychologist, my therapist.  I'm thinking she's not getting it.  She's intuitive, but - 

 

She wanted to know my purpose in life.  (I've always called it my "porpoise," "I'm looking for my porpoise.")  But then it seems she puts her values on it.  If I would only volunteer at Lifeline or maybe get a 15 hour a week job, I would have a porpoise.  

 

You see, I look better.  I've gotten my ratty hair dyed, and I am a bit better, paying more attention to my clothes and stuff (but for me, comfort is far more important than fashion). So all of a sudden she thinks I'm well!  Has she fallen prey to that thing we see over on facebook, not recognizing "the invisible illness?"

 

So I pooh-poo'ed her job suggestions, saying that's not happiness, that's not porpoise, that's just an income. So she said, "you are so intelligent, there has to be some way you can contribute, interact."

 

I told her that right now I'm interested in things psychological, "naturopathic," (though I have yet to meet a naturopath who really really knows it, who knows more than I do), symbolic, mythical, and yet practical.  I took off my lithium bracelet and put it on her to wear, to demonstrate that I was now going to go "pie in the sky" stuff.

 

I told her that if I could, I'd like to have a practice using the techniques of Jung and Stanislav Grof, transpersonal psychology.  To interpret the symbols in a person's life in a way that helps them to the next step on their path.  I got passionate about discussing this.  Probably animated, even.

 

By the end of the session (when I had the lithium bracelet back on) she started asking me questions like, "do you think you are high or elevated today?" and making statements like, "be careful."

 

WTF.  I know the drill.  "ARE YOU MANIC?" and the answer is NO, I'm AMERICAN, and I'm PASSIONATE about what I am talking about.  (Aussies are a lot more subdued than Americans, a lot quieter unless they are drunk drinkers drinking) but it took me a few minutes to "get" that's what she was getting at.

 

So - mental diversity.  Emotional diversity.  Not getting recognition that this is "okay."  

 

Had nightmares last night, rape, captivity, Mordor, evil end of the world stuff.  That would tell me more B6, but I don't know what kind, nor am I sure how to work it.

 

Dr. Walsh says never take B6 after 3 pm, and never take zinc in the morning.  More tweaks.  

 

I wanted to explain to her about waves and windows.  I never got there, the hour was too quick.  And now I'm terrified to go to the pDoc next Tuesday and tell her I haven't done any tapers, and I'm volatile, but I don't want to up my meds, unless I stay this way for 3-6 months. . . . or unless it becomes unbearable.

 

I've seen people in here endure unbearable pain at withdrawal.  And come out the other side.  Like Aria.  Like Alto, like Petu - and still coming out - but coming out!

 

How do you know when you've shaken free enough?  When to stop?  How many months (or years) is too long to be "prolonged withdrawal?"

 

(yes, still depressed, and after my animated discussion with the psychologist, I got on the train and dozed off, nearly missed my station).

[Meimeiquest]

Oh, so much! I'm sorry for your burdens. Brings back memories of my dad's TBI. We are all different, but I could never make the cuts with lithium as large and fast as you. Right now I am doing 25mg/week, and that feels fast....I can feel the irritability looking for a lightning rod. Dr. Mensah said it can take eighteen months to resolve undermethylation, so you may have a bit of a wait ahead. I can't tell you how much the autoimmune diet has helped me. And all of that probably has nothing to do with you. I think you are doing a great job in a tough situation. I would be insulted if someone implied that they could tell me my life purpose...especially if it was a part time job! Maybe a step towards healing, but not a life purpose. I remember my pdoc being so aggravated with me when I quit a dumb part-time job, saying I was going to go back to private duty nursing (which is not much either). She just couldn't get it that I was doing that because I didn't have adequate child care for my kids on off days from school when my husband was gone. It wasn't often, but it still was. And she told me if anything ever seemed clear to me, it was the disease, because life just isn't clear, it's gray. That was one of my best decisions ever.

[Altostrata]

JC, how are you doing?

 

Aussies, please check in here http://survivingantidepressants.org/index.php?/topic/6284-australia-members-please-check-in-here/

[JanCarol]

Thanks Alto - it's been too long since I've written and now - I'm overseas....

 

1.  I have found that friends here are going through the same stuff only different.  My doctor friend is adrenal fatigued, possibly chronic lyme, went through a candida treatment, and is still on the floor.  She is going through "Functional Medicine" which is similar to what my own doctor is doing - and yet different.  The impressive thing is that these Functional Medicine guys are International Giants changing medicine with the hard science research to back it up.  They do things like open a conference by saying, "It is now clear that Parkinson's is directly caused by exposure to pesticides......."

 

Other friends - many of them have thinning hair, one had Hashimoto's and also lost her thyroid (but is doing mentally / emotionally well).  The words "adrenal fatigue" come up again and again.

 

2.  I have had enough of being with my Mom and now feel like about a 3 year old.  I'm too flaky, too freaky, she obviously thinks I'm weird.  I'm staying here.  I'm loved.  But apparently I'm not really welcome.     And I should just shut up.  Even though it pains me to see that she is taking medicines which are hurting her, are robbing her of quality of life.  At least she's not on any SSRI's, though the Xanax is a "welcome friend."

 

3.  Apart from that my mood has been stable even though I've surely fecked up my supplement schedules.  I just found some P5P that was supposed to go in some of the trays but have no idea which ones....  I've had some terrible nightmares, always of attack and having my safety and the safety of those I love compromised.  (some would say whoops, I got my B6 too late in the day)  But overall, because I am seeing loved ones, I'm high, a little anxious, a little jittery, and not a little large and loud.  

 

Why is large and loud so frightening to people?  I am deaf (physically deaf, hard of hearing), surrounded by deaf people.  I speak up to be heard, and am in the habit of that.  Next thing I know, people think I'm a spastic who is yelling.

 

But I'm mostly okay except for the Mother part.  Amazing how quickly a Mother can chop you down.  I realize that I am challenging her belief system, but I'm not the only one.  I had a cousin come down from Michigan who told her the SAME THINGS I am telling her, and a physical fitness expert who offered her assistance for keeping her 85 year old body in motion and balance.  And she dissed them as effectively as me.  But it only hurt me.  I keep saying "be like air, heart is like air, these stabs go through and no harm is done."  Still working on that.  It does make me understand some of the flow of trauma in my life, however.  Maybe that's easier to work on from a distance.

 

I will check in to your Aussies' thread, and I will try to bring these darned duplicate books back to Australia for Aussie members.  I have a tiny gift for you Alto, but it is back in Oz, I will get it to you from there.  (when I say tiny, I mean tiny)  I am THRILLED at the anti-psychiatry library I'm building!  I started my first 2 books already, one is dry and dreary, but the other is about dreams and is sparking things that I haven't felt in 20 or more years.  Was it real then?  Is it real now?  Will it help my ability to guide my life?  Who knows, but at least I am awake and aware enough to look.

[JanCarol]

To be fair, Mom is probably a bit traumatized by me, finding it difficult to trust someone who was so selfish and unreliable and sometimes not a little dangerous.  

 

And the "bipolar thing" explained that stuff so well.  It probably frightens her that I'm questioning that.  

 

But I'll show her.  I'll get better.

 

Flying soon, see you on the other side.

[JanCarol]

On the other side, home:  disgusted at how badly I messed up my supplements on holiday.  Sick again (did 3 courses of antibiotics before and during travel, so bowel biotics are fowled up, as well as likely a yeast infection.  TMI?  Sorrrrrrry).  Feels like cold / throat - but likely viral.  I can be such a baby when I'm sick.

 

Of course, one of the things I messed up about my supplements was that my Reboxetine was so low (1/8 tab) and the crumb was so tiny that it frequently got crushed or lost in travel.  Soooooo this could be a withdrawal "flu."  I suppose.  Harg.  hargh.  

 

Got acupuncture support today, signed up for a massage tomorrow, and I have to go, girl is coming in special for me.  Maybe it will help?  Hope I don't pass it on, if it is a virus.  I'm such a baby when I'm sick.  Thank gods for acupuncture.  

 

And yoga.  While it hurt, it also had to do some good.  And magnesium baths.  Oh where would I be without them?

[JanCarol]

Ack! The errors may be even worse than I thought.  I just looked at tonight's meds (which are now hours late because I missed my afternoon thyroid) and found NO LITHIUM.  This is the lot with the 450 mg of lithium.  How many nights have I missed 450 mg out of the 675 mg scheduled amount.  i.e., only on 225 mg instead of 675 mg?

 

No wonder I feel awful!  Sheesh.  And of course, when I'm sick (which I have been for weeks now) errors like this are SO EASY to make!

 

Ack!  Hargh!

[Meimeiquest]

Sorry you are having such a rough welcome home! But glad you could make the trip...I don't think I would be brave enough! But flipping all hose time zones with decreased lithium does not support your bipolar diagnosis. Just sayin'

[JanCarol]

LOL Meimei!  At least I'm LOOKING to see if there is lithium in my evening meds.  I found another one with no lithium in it, which leads to my theory of:  "ut oh, I messed up" quite plausible.

 

IF that is the case, I think I'm doing darned fine for someone with an abrupt withdrawal like that.  Sadly, if that's what happened, I am a good girl and will go back to my last registered/approved dose.

 

I have approval to knock it back one notch, which I may do next time, but not yet!

 

Just adjusting for the pyroluria, switching my lipids over away from Omega 3's - and yet trying to keep my DHA up - is challenging enough, without adding a lithium taper!

[Meimeiquest]

Yes. StableRUs. At least in our dreams, if we ever had any.