Meimeiquest: my introduction

[Altostrata]

I can't read this without crossing out the neurotransmitter imbalance b.s. -- but I do hope the treatment helps you, meimei. Perhaps you do have some kind of metabolic problem resulting in elevated copper.

 

Just when I thought I (or the family) couldn't wait anymore, my results from Mensah Medical came. My main diagnosis is Pyrrole Disorder (functional zinc and vitamin B6 deficiency caused by a weird thing) with elevated copper (natural consequence). Diagnosis is by urinalysis. My methylation status was normal. I am thrilled because it is the fastest to respond of any of their diagnoses. Symptoms include: poor tolerance of physical and emotional stress, poor anger control, frequent mood swings, poor short term memory, reading disorder, morning nausea, absence of dream recall, frequent anger and rages, depression and high anxiety. Copper overloads tend to lower dopamine levels and increase norepinephrine in the brain. Imbalances of these important transmitters have been associated with paranoid schizophrenia, bipolar disorder, postpartum depression, ADHD, autism, and violent behavior. More than 90% of persons diagnosed with depression, behavioral disorder, ADHD, autism, and schizophrenia exhibit depleted zinc levels. (From info sheet). Sadly, my husband says they nailed me. Now we have to see if their prescription nails it. It is a list of high dose supplements, am and pm, cal/mag, evening primrose oil, and, "for calming consider" inositol and GABA. I have to wait for a pharmacy to call and see if we are willing to pay for this, and then they compound the am/pm supplements and mail them.

 

If someone is interested in looking into this and spending tons of money, I really don't know much beyond what is listed in the resources and video library sections of mensahmedical.com. The doctors come across in real life exactly as they do in the videos. I was able to fly in and out the same day by having an early afternoon appointment.

[mattinsmom]

I hope that you have come upon something that will help. I'm very interested in hearing how everything works for you. 

Wishing you great results!

[Petunia]

I'm happy to hear you have finally got your results and a prescription, I'm also very interested to find out how this works.  But I'm confused about something, if what you have is basically a zinc and B6 deficiency, why aren't they just supplementing with these two things?  I also have my fingers crossed for you.

[Meimeiquest]

Thanks everyone for your kind words. Alto, you are more than welcome to scratch or delete anything . I have no idea how this will turn out. Petu, pls feel free to use me as a guinea pig. The sensory sensitivity that you report having since childhood is a pretty major marker for some of the stuff that they work with. Australia has more practitioners trained in this than any other country (which doesn't mean they are near you.)

 

Thursday night I listened to their webinar on pyrrole disorder and it pretty much blew up my ideas. I have an appt. on Wed. to actually discuss everything with the nurse. I think I should wait until I talk to her to explain more since I probably don't understand it myself. Who knows when I will actually get the pills!

 

My knee is better but still has a couple of movements that send me through the roof, thankfully learning to subconsciously avoid them.

[lexicon]

Hi my dear Mei,

I follow your posts, and hold you in my thoughts and prayers .. I wish very much for this to work out for you,

so that you can experience a symptom free life ..

You are one of the kindest, and caring people that I have crossed paths with ❤️ I pray that you will find well being, serenity and peace ❤️

Love, Lexi

[mattinsmom]

flyby.

Keeping you in my prayers. 

[Meimeiquest]

Just back from physical therapy...knee much improved but not healed. See dr. Monday.

 

The joint soreness that came as I finished metoprolol/atenolol taper has ended.

 

The heart thudding did not. I came to realize it came after eating certain foods. I'm now on an anti-immune diet with some other things taken out as well, and it seems the thudding has ended. So I need to figure out how to heal my gut. I think I will try Dr. Axe's suggestions for leaky gut healing. My pdoc suggested antibodies to neuro-receptors as a possible problem, plus other very expensive possibilities. At least she is meeting me "outside the box."

 

I talked to the nurse at Mensah Medical. She agreed that my copper and pyrrole lab abnormalities were fairly mild, but she said they sometimes don't correlate with symptom severity and symptoms still resolve with the supplements. Or something else could be wrong in addition to what they identified. They are not doctors who help you "get to well", they just do what they do. It will probably take awhile to get the pills, then taper up over a few weeks, then the clock starts once I am at full dosage. Retest after six months.

 

Just for the record, I am really depressed, can't focus, almost four weeks behind in paperwork at work (and don't get paid till it is turned in). My husband is really growing in his character...between this and his underemployment issues it feels like we are really going through it. But I know I am having an easier time than most of you. Good luck to all!

[EternalOptimist]

Hi M.

Wow, I didn't know you worked. You do have a load. I believe a lot of our bodies will heal once were off the drugs for a considerable time, course getting from here to there is another story. And if we can take things in the meantime to help us along the way and they Don't cause considerable problems, why not? I'm so sorry you're considerably depressed. I know that sucks. I noticed I had some heart pounding after eating little pasta with Parmesan and then I had a couple of slices of pizza last night and my heart pounded again. I think it might be allergy to the cheese right now. When I was healthier I could handle it again. Also if I eat a heavy meal my heart may pound up to couple hours, is all part of having an exhausted body going thru digestion I think.

Congrats forgetting off the Beta blocker.

What pills will you be taking now?

I feel sorry for myself because I'm alone, divorced by my choice, and then I think, gosh if I were married now I couldn't handle dealing with another person . Between rock and hard place LOL

May you have a significant break in the depression today somewhere along the line.

Hug

[mattinsmom]

Prayers to you. Sorry that you are feeling depressed. (hugs)

[Altostrata]

meimei, what are Dr. Axe's suggestions for leaky gut healing?

[Meimeiquest]

Gut healing:

Remove foods and factors that damage the gut

Replace with healthy foods

Repair with specific supplements

Rebalance with probiotics

 

I had a crazy self-inflicted experience yesterday. The fact that I am okay is one of the reasons that I think withdrawal is not my main problem. I just have not been able to think or concentrate enough to do my charting. The last time I did it, I took a Nuvigil and had a big reaction. No more Nuvigil. Yesterday, I got the call that I HAD to do my paperwork to continue on. I know this was extremely risky, but I took Red Bull to do it. I drank eight cans, half a gallon, over eight hours. I took an atenolol when my pulse started going up. It took me eight hours with many breaks, but I did it. I (obviously) did not sleep all night, and about 3 AM my pulse was thready and chest felt weird. (I had taken my regular bp med before the atenolol issue surfaced.). Drank a lot of water (DIY IV). Worked all day, my husband drove me there and back. So bad, but I still have a job. But I think if withdrawal is the cause of my anxiety, fatigue, and poor concentration, I would never have made it through that. I am NOT NOT recommending this...wonder what would have been better.

[mattinsmom]

I think that much Redbull would have killed me. A coke can get my heart racing. I'm glad you were able to get your work done but we must find you a safer way of doing it! I do hear you tho - the desperate measures we sometimes take, the corners that we find ourselves in. What a mess this medication stuff is. Obviously you know your body but please be careful, I like having you around. 

[EternalOptimist]

M, So after the one or two months off AD's you were still fine?

Thnx

[alexjuice]

Are you taking the zinc? B6? What else, if I recall, biotin, manganese, maybe selenium for krypopyrole? Feeling better?

 

Do you eat a lot of chocolate or coffee or fruits? Eat any lamb and beef for zinc? What are you finding for foods?

[alexjuice]

Yikes red bull will leech zinc out if your body. How about water to drink?

[Meimeiquest]

M, So after the one or two months off AD's you were still fine?

Thnx

. I wish. That is when problems started.

[Meimeiquest]

 

M, So after t

he one or two months off AD's you were still fine?

Thnx

. I wish. That is when problems started.

I'm sorry...I read that wrong. Yes, for a measure of time, one to two months, I was fine, then problems started.

[Meimeiquest]

Yikes red bull will leech zinc out if your body. How about water to drink?

. I just did it once for energy, I have had such fatigue/concentration problems. But you are right, water is much better and it is what I normally drink. I am really lucky I got away with my Red Bull day.

[Meimeiquest]

Are you taking the zinc? B6? What else, if I recall, biotin, manganese, maybe selenium for krypopyrole? Feeling better?

Do you eat a lot of chocolate or coffee or fruits? Eat any lamb and beef for zinc? What are you finding for foods?

I just started the supplements on Friday, huge amounts of zinc and B6, among other things, including a special form of selenium. Molybdenum to pull copper, which is the milder substance they use. But I had a dream last night . Reading with Dr. Google, copper overload is a downstream effect of gut dysbiosis. They consider it a marker of generally impaired metal metabolism, and some people have genetically impaired intestinal regulation of metal absorption. My copper levels were about 10% above normal so I'm guessing it is the dysbiosis...they see people with levels more than twice normal. The paleo autoimmune diet seems to be helping me a lot...they did not have a particular diet recommendation, although they discuss in a video that chocolate and avocado have a lot of copper in them. My dad raised angus cattle, so I've always eaten a lot of beef.

[EternalOptimist]

 

M, So after the one or two months off AD's you were still fine?

Thnx

. I wish. That is when problems started.

Ugh. So sorry this happened to you too .

Thnx M.

[alexjuice]

Terrific you can recall your dream. Many people find symptomatic relief on the sups. Good sign.

 

Feeling better is really important. The better symptoms get the more you can participate in your life and better attitude improves and the recovwry starts picking up speed.

[mattinsmom]

Hi. Sorry that there wasn't any kind of dietary suggestion for you. How are you doing/feeling now?

[Meimeiquest]

Thanks to both of you! It is still early in the game and I am that person who always has a big placebo effect, but overall I feel much better, but not well. It's two steps forward, one step back. But I haven't lost it with any family members this week and have been able to play more with my little patient. I'm still locked inside my head a lot, but the thoughts are calmer. Depression is gone. Dandruff gone (that's a little TMI, but it is a symptom of zinc deficiency). No cravings, I've lost at least six pounds. Still very tired and slow. Some yeast die-off moments, but they are nothing compared to drug WD. Dropped lithium with no symptoms so far, dropping oxazepam 0.1mg per day. Some muscle pain. Sleep still pretty messy, no more dreams.

[Meimeiquest]

Going through papers (the collection of all these years of exhaustion). Found note from PCP with lab work of 1/30/14, I hadn't seen it. My creatinine level was 1.3. This was never discussed. Psycheducation.org says you need to move to get off lithium when creatinine hits 1.0 or 1.1. Thankfully I started doing that 2/2.

[mattinsmom]

Lithium is a flipping nightmare to manage (mho). 

 

It looks like you started the vitamin supplements about 2-weeks ago - how is that holding for you? Still ok? 

 

And the placebo effect - work it in your favor, its a good thing

 

I hope that you are feeling less depressed and that energy and stamina are coming back with all of the changes you've made. 

[Meimeiquest]

I am mostly doing better...not well, but better. My husband came in one day and said, "you are doing so much better." I said, "but I'm still exhausted." He said, "There's a big difference between exhausted-cleaning-the-bathroom (what I was doing) and exhausted-lying-on-the-couch." Which is true. Other than that, I am almost symptom-free by day, insomniac by night. My knee is not doing well with my off-the-couch lifestyle. I need to call Monday for an MRI appointment. But that has nothing to do with drugs.

[Petunia]

This is great to hear Meimei, and interesting too.  I'm glad you are feeling better.  How much B6 are you taking?  Has it effected your dreams, when I started taking it my dreams got completely out of control.

[tezza]

Hi meimei,

 

I'm glad you're felling better, too! I'm still trying to get caught up and it's very hard given that I've neglected the house for SO long. (Remodeling has been going on forever, that hinders even more). Then, my seven year old granddaughter came over for several days.

 

EIGHT cans of Red Bull! I'm very thankful it didn't hurt you! I understand why you did it though and sympathize with you.

 

Re: post # 240, it wasn't TMI for me. Actually, it was informative, I didn't realize dandruff was caused by zinc deficiency. I appreciate you posting it.

 

Wishing you well and sending love and hugs!

[mattinsmom]

Your husband is right. There is a difference. Don't devalue the progress you are making. Every step is a big one.

Speaking of steps, I'm sorry that your knee is giving you trouble. 

[Meimeiquest]

This is great to hear Meimei, and interesting too.  I'm glad you are feeling better.  How much B6 are you taking?  Has it effected your dreams, when I started taking it my dreams got completely out of control.

In typical fashion for me, I have misplaced the paper that gives the supplements and doses. They are all compounded together. The B6 is in three forms, but I can't remember more than that. Zinc will be a whopping 90mg when I have ramped up completely (this is not to do without someone watching your bloodwork...said the girl who drank half a gallon of Red Bull). I had one normal, clear dream two days in, but none since. I have probably had about ten dreams like that in the past decade. It hasn't been the best decade for sleep. Do you take B6 in the mornings? I was told to make sure I took it before noon or it could affect sleep.

 

I have dropped to about 4mg oxazepam during the day and I have been edgy today with a bit of sound sensitivity. I'll have to see if I can hold...getting off lithium is most important now.

[Petunia]

Most likely, you need the B6 and I don't.  I was taking it in the morning, but not any more, I find my dreams disturbing without it, but after taking B6 for a few days they became too intense.  I've read that B6 improves dream recall if you are deficient in it.

 

Holding on the oxazepam taper sounds like a good idea.

[Meimeiquest]

Yes, Petu, that sounds right. Wild dreams are the last thing you need. I think for me, the big issue is sleeping so little at a stretch, I don't get to the dream phase.

 

OK, this is for JanCarol: I have misplaced my sheets (the day I am organized you can call me cured!). I think kp's were 24 (corrected). Copper was 119, which is normal by traditional scoring, but 9 above normal by "optimal" scoring. Zinc was normal. Copper/zinc ratio was barely elevated. Ceruplasmin (sp?) was normal. Histamine and homocysteine were normal. TSH 1.4. I told nurse, who reviewed with me, that this didn't seem off enough to explain my symptoms. She said "we'll just have to see, sometimes people have minor lab changes but a big response to treatment." That is partly because the body is going to try to keep the metal levels normal in the blood as much as possible, so it doesn't measure how much has been stored in tissues. Regarding pyrolle disorder, she said I probably have a little all the time, and it is just aggravated by the stress of the med changes.

 

So my pdoc finally opened up to me about some of the things that she would like to study more (instead of just telling me to relax and celebrate how much medication I have come off of). She said I could test more COMT snp's, some are finding autoimmunity to neuroreceptors, go to Amen Clinic (a big favorite here, not). I decided to try the paleo autoimmune diet (basically low-fructose, low allergen, anti-inflammatory.) It has been a big help. I found an interesting article on autoimmunity in the brain...I don't think I have it, but the section on inflammation in the brain did sound a lot like me. Some researchers think depression is more of an inflammation/immune problem than a neurotransmitter one. If I had a COMT inefficiency, there's not a lot to do beyond what I'm doing except some detox things like Epsom salts baths, so I started those. Besides the fact that some in my family sound like the "normal" version of COMT problems, all the over-activation med and supplement reactions involve products that affect catecholamines, and the COMT enzyme helps to break down catecholamines.

 

So I am just gng with those very improven ideas for the next six months, and we'll see what happens.

[Altostrata]

All you need to do is look at Yelp.com reviews from customers to see the story at the Amen Clinics.

 

Here's the head of the National Institute of Mental Health on Dr. Amen's scans http://www.nimh.nih.gov/about/director/2010/brain-scans-not-quite-ready-for-prime-time.shtml

[JanCarol]

Thanks for posting that MeiMei - as I feared, the scale in the US differs from what is used here in Oz.  Oz is weird.  For example, you don't count calories, here, you count kiloJoules.  I don't know anywhere in the world that uses kiloJoules, not even the UK.  So WTF!

 

I'm with Alto on Amen clinics, they're on the weird side of things.  BUT - that said - hubby's brother does Amen style work, the scans and neurofeedback, and claims to be getting good results.  I think too, like Walsh and Mensah, Amen is a genuinely caring individual who has collected some data and would like to believe he can interpret it for the better of humanity.  Whether he is right or wrong, I think he, too, is trying to address to overmedication issue in ADHD, depression, PTSD, and other "disorders."  (I put quotes around it, Alto!)

 

Your knee.  I tore a meniscus in 1988.  I wobbled around for 4 years with no improvement.  I had surgery in 1992, and they trimmed the meniscus.  This means I have NO inner meniscus left.  I'm thinking that the orthopaedic surgeons are thinking that maybe not so much trimming.  However, trimming made my knee NORMAL for 10 years until I tore my Anterior Cruciate Ligament (AXL) in 1999.  There are 2 things my osteopath told me:  Glucosamine Chondroitin - HEALS connective tissue.  We also use green lipid mussel downunder for a similar effect.  And MSM, reduces inflammation.  If you have a meniscus tear, all the physio in the world will not fix it.  Physio will keep you from getting bent out of shape COMPENSATING for it, however.  (like me, right knee, no AXL, puts a lot of strain on my psoas, lower back, and left knee - physio helps balance that.  But it will not go away until I get a knee reconstruction.  Which is pointless because I can still use the knee better than I would be able to after reconstruction.)   At my peak, I was taking 3000 mg glucosamine / 2000 mg chondroitin, and up to 8000 mg MSM.  I'm now just on 1500 glucosamine / 750 chondroitin, and no MSM.  That doctor died, and I was so angry at his death, I quit the MSM.  But I'm afraid to quit the glucosamine / chondroitin, as not even codeine kills the pain my knee gives me.  And yes, the trimmed meniscus now bothers me again, now that I'm older.

 

And, as always, fish oil.

 

But I'm learning that pyroluria people cannot always utilize the arachnosomethinglipids in the fish oil and that we should use EPO instead.

 

I'm on a hold (getting ready to write that in my intro page) because I had some depression last week, dealing with the chemistry of all this new pyroluria / under methylation / cortisol stuff.  It's like I went from a biochemical model - to a trauma based model - and now I'm back on a biochemical model again - albeit, a less harmful one.

 

ALSO B6 (maybe this info is for Petu) is not just B6, and I've been advised to take P5P version of B6 WITH the B6 and learn which is better for me.  My Aussie doc was a bit stunned that I was aware of that.  One is a precursor or extract of the other - I feel so stupid that I don't understand all of this stuff - but I know that some people replace B6 entirely with P5P, and some people take some of each.  

 

And MeiMei - perhaps you can tell us what the 3rd B6 in your formula is? 

 

Also, don't freak out about the Niacin, I take 2000 mg a day.  It is high, but still in the "middle range" of some of the information I gleaned on cholesterol, magnesium, and mood control.  The only thing my iDoc (Integrative doc) said was, "Match Vit C to your Niacin, so be sure and take at least 2000 mg of Vit C per day, if not more to improve oxidation."

 

MeiMei, it sounds like you are doing so much better - it may not feel like it now, but from over here it looks like you are taking control.  I'm SUPER IMPRESSED that you didn't mess around and flew to Chicago to get the answers straight from the Mensah mouth.  That is so brave!  And I think you are reaping rewards.  I get that it can be confusing - going to these iDocs is like:  everything you ever knew is wrong, try it this way.

 

And maybe there's not clinical trials (RCT) behind them - but do we have faith in RCT anymore anyway?  And has the "normal" system worked for us?  It may be weird, but hey, aren't we, too?  

 

I have a mission to spread the words (from Will Hall):  Mental diversity.  to which, I add:  Emotional Diversity, too.

[JanCarol]

Oh yes, I forgot to tell you:  my acupuncturist (I'd love a better name for her, but TCM sounds so acronym-y and I can't keep up with everyone's acronyms) always reminds me:

 

Knee problems = kidney channel.

 

Weak kidneys = knee problems.

 

Since you're on the lithium, this makes perfect sense.  I know, a meniscus tear is a physical thing that can't be improved by massaging your kidneys.  I get that.  But she did tell me to drink barley water.

 

Since we're old friends, now, I'll share my recipe, as I just made a batch last night, and it's YUMMY!!!!!

 

1 cup pearl barley

2 litres filtered water (roughly, quarts)

rind of 1 lemon

rind of 2 oranges

brown sugar to taste (about 2-4 tbsp)

juice of 4 lemons

Juice of 4 oranges 

(last night I used 2 limes, 2 lemons)

 

Rinse the barley, bring water to boil.  Add barley to water, when boils, reduce and simmer 40 minutes.

 

Zest the citrus rind and set aside, juice the citrus and put in fridge.

 

When barley is boiled, strain, discard the barley (i give mine to hubby for his cereal, any he doesn't use goes out to the bird feeder for the critters)

While liquid is still hot, add citrus rind and sugar, stir well.

 

Leave to cool.  When it's cool enough, stir in the citrus juice.  Strain to discard the rind and any messy pulp or seeds from the citrus.  Refrigerate.

 

Makes 2 litres.

 

Drink 1 cup a day.  Kidneys will thank you.

 

 (we need an emoticon for a heart!)  With love, JC

[JanCarol]

One more thing:  while barley is a gluten containing food, the water is not.  And it's chockers fully of happy enzymes and proteins to make your kidneys sing.