Meimeiquest: my introduction

[mattinsmom]

Fly-by hug

[Nikki]

Hey MQ I was looking for your posts to say hello.  Hope you are well.....

[Meimeiquest]

quote name="Nikki" post="96785" timestamp="1407410784"]Hey MQ I was looking for your posts to say hello.  Hope you are well.....

 

Hi Nikki, I am thinking of you every day in your journey with your daughter. I am doing pretty well, the supplements and autoimmune diet/gut healing efforts have been life-changing for me. I am dropping drugs pretty fast, though, and I still have withdrawal symptoms...about same amount of symptoms, but dropping much faster. I am still pretty tired, but I am going to just do these things for the next six months and see where I land.

[mattinsmom]

Rooting for you!

[Altostrata]

meimei, what is your gut healing regimen? (Or did I already ask this?)

[Nikki]

Yes I would like to know MQ:)

[Meimeiquest]

Thanks, as always, Amy! I hope your surgery month is going well.

 

The weird thing about my gut is that I don't have GI problems, so I'm not being real aggressive. The diet is the big thing and a lot of work to source and prepare the food. Building up to 25 billion organisms/day in probiotics. Amy Meyers recommends 25-100 billion. I made some cultured vegetables but she says they feed the good and the bad bacteria, so wait until healed to use them. I don't know how I will know when I am healed, though. Aloe vera extract three times a day. Digestive enzyme one capsule per meal (low dose).As much bone broth (collagen) and coconut oil (caprylic acid) as I can manage. I am not really doing much with prebiotics as I don't know how that affects the bad bacteria, but I cook a lot with onion which is a prebiotic. We moved to filtered water. Actually Kangen water which I am not a fan of, but my husband has a friend who works in the store and wanted it, and it's filtered, so it makes everyone happy. L-glutamine is highly recommended but dr. said it would be too stimulating for me. Tried licorice root, and it was too much.

 

Websites that I have gotten something from: Chris Kessler has a six-part series on GERD; Kelly Bergen, especially on zonulin (she says most people who have a psychiatric reaction to gluten don't have GI symptoms); Josh Axe, Amy Meyers (I think Alex had problems with her). Somewhere there is a lab website where people can order testing kits and it has a lot of info, but I can't remember the name.

 

The autoimmune diet is intended to be temporary, and then you start carefully reintroducing food. But I can't tell the difference between WD symptoms and food allergies, so I am staying on it pretty carefully as I would much rather get off these drugs.

[Meimeiquest]

Carrying on. I think I may have achieved much of the benefit of Mensah supplements, but I am still so, so tired. I really suspect a mild case of chronic fatigue syndrome. Very sad to realize progress may be impossible without slowing down, whilst everyone around me measures progress in increased productivity. But I am not manic, depressed, or insomniac....just bitchy because I AM SO TIRED.

[rapunzel2]

natural healing just takes time. your body balances itself and heals, but it doesn't go quickly. 

at the same time I think it's not possible to jump over withdrawal - you still need to battle this, although other measures may make it more tolerable. 

I totally understand this despair about tiredness. I hate it too! but it will definitely get better. 

[Meimeiquest]

But my fatigue was the reason for starting the meds. Heavy sigh.

[Barbarannamated]

But my fatigue was the reason for starting the meds. Heavy sigh.

Me, too, Meimei. Life was good, I was overscheduled and understandably fatigued. Makes this whole mess so much harder to deal with, eh?

[rapunzel2]

But my fatigue was the reason for starting the meds. Heavy sigh.

yeah but the meds can't help that - I do think that natural methods do help the fatigue, once the withdrawal is over. 

[Meimeiquest]

My best news lately is that I have a new PCP, to replace the doctor who didn't tell me that my serum creatinine had almost doubled. She's a nurse practitioner and she was so calm. Unlike others who act like I'm a mutant reptile for a) trying to get off these meds and not resuming meds when the going gets rough. Her opening salvo was "I've been reading your paperwork and I'm not sure if a physical-type visit or a problem-focused visit would be most helpful. What do you think?" So I am having a stress test next month...my heart has been thudding and going too fast at intervals for a year now. I have done everything I know to do about it and I think it is okay, but I am not sure enough to feel confident to exercise.

 

I updosed lithium a bit last night for subtle symptoms, feel much better today. This is the drug that scares me because it is the drug that helped me. But I am confident I will be okay...I think it may just be the fragile time when the drug really loses it's therapeutic effect.

[Meimeiquest]

Discouraging news today. Got my lithium level back, on 650mg which is almost half my original dose of 1200mg. It was 0.4, which it has been for over two years...thanks to a drug interaction with Lotensin which indirectly competes with it for excretion. If I was doing it over, and really understood that my anxiety was from my liver improving and thereby decreasing my oxazepam level (what I thought, but I wasn't sure) I would have updosed. I have had nothing but trouble trying to deal with the fallout indirectly.

[Meimeiquest]

Routine pdoc visit today. She had a fit over my elevated creatinine level in January. Wants me off lithium now, even if it requires hospitalization to do it (which I declined). She settled for dropping 150mg weekly for four weeks. She said the key is sleep - I must take enough oxazepam to sleep well. Thoughts?

[Altostrata]

Smaller decreases in lithium, avoiding the benzo, would be my preference.

[Meimeiquest]

Thank you (and we have missed you, hope you are ok), The problem is that I haven't slept well for any stretch of time for at least a year, I don't even know when, even on a full 1200mg of lithium, plus some dose of oxazepam, plus supplements, plus Epsom salts baths, yadda, yadda. It's not something I write about it, I'm used to it, I don't worry about it, I know it's just from tapering out the wazoo. But I think she may be right that I can't do a quick taper without good sleep. The last two nights I have increased from my regular dose of 16.8mg to 20mg and it has helped a lot with my sleep. So maybe a little bit won't set me back too much. But the real symptoms will come later. I may have yet another doctor change in my future, I don't know.

[mattinsmom]

I don't even know what to say. The doctor bounce sounds like it has been just one problem after another. I'm sorry. 

[Meimeiquest]

Well, I haven't left a doctor that I miss. The PCP was so irresponsible to not tell me my creatinine had almost doubled. Actually, the pdoc offered to hospitalize me to withdraw, that's how strongly she feels...and when I went to check out she wrote for me to return in 3 to 6 months. I have been through enough med changes before withdrawal to know how weird that is. At best, she thinks she has done all she can, but probably it's because she doesn't give me a chance of coming off successfully. So I guess I can do whatever I want in the next six months.

[mattinsmom]

So wait....Go to the hospital immediately or see you in a few months? Seriously? Thank God you understand tapering and can also see the foolishness in her logic. 

[Addax]

Meimeiquest-

 

Thank you for sharing on my thread. there's something reassuring about knowing symptoms have been experienced by other people, even if you wish they hadn't had to go through it.

 

I hope you don't mind me asking... How long till the post Wllbutrine fatigue began to pass?

 

I hope your sleep improves soon and I'm sorry about your recent wired experience with your doc. I wonder if some docs just don't know what to do or what to advise so they try to wing it or guess so they don't have to admit they're at a loss.

[Meimeiquest]

Hi Addax,

 

I wish I could tell you. I had a regular depression in my late 20's, and when I adopted in my late 30's, my different PCP asked how we were with the baby when I went in with strep throat, I told him we were very happy but I was very tired and he popped me back on Prozac, no return visit, one sentence from me, one sentence from him. But I really was tired, very tired, and it got worse over the years. So there's that...I think I may have something that looks like CFS. And I definitely have something wonky in how I metabolize and respond to anything that affects dopamine and stress hormones.

 

But the big problem was that my tired morphed into anxious by two months off Wellbutrin. Which maybe was withdrawal, but I think the Wellbutrin slowed down my liver, so when it left, my liver gradually caught up and eventually was able to chew up my benzo faster. An odd theory, I know, but what it felt like. So I don't know what to tell you. Plus I am still on two sedating drugs.

 

Right now I have a couple of tricks for true emergencies, after some other disasters. First, Bullletproof coffee which seems to sit with me better than regular. Second, ribose which gives me an unnatural energy and would be bad if I used it.much, but It is right now my last resort. B vitamins might be another trick. If you overshoot, taurine 400 to 500 mg. All very crazy and dangerous, but the gift of working is worth a lot. More appropriate ways to wake up would be morning walks, showers, naps...

[Meimeiquest]

Also, working 25 minutes, stopping for 15 or some other combo so I don't get too tired.

[Barbarannamated]

Meimei,

 

Why do you suspect the wonky dopamine and stress hormone metabolism?

 

"And I definitely have something wonky in how I metabolize and respond to anything that affects dopamine and stress hormones."

 

I have similar suspicions based on my own and family problems.

 

Thanks.

[Addax]

Thank you Meimeiquest.

 

I had heard of bulletproof coffee but had forgotten about it until now. Sounds like you have quite a few tools in your back pocket. I think the idea of a walk or physical activity in the morning might be key for me. It's just being able to motivate to do it before I sit down after waking.

 

So you were treated for fatigue with Prozac? THAT sounds kinda wonky to me. Though I just read that people are treated for CFS with Prozac. It's seems wierd to me because I was prescribed wellbutrin to counter the fatigue and yawning prozac caused.

[Meimeiquest]

Meimei,

Why do you suspect the wonky dopamine and stress hormone metabolism?

"And I definitely have something wonky in how I metabolize and respond to anything that affects dopamine and stress hormones."

I have similar suspicions based on my own and family problems.

Thanks.

Because every drug that has over-activated me increases one of those levels somehow. It is the COMT enzyme that breaks them down. I read a lay level article about it and said, "Oh my word, that's lots of people in my family....and not the ones with mental illness. I was tested by Genomind and only had one "normal" variant. But my (now former) pdoc said there are other snp's to test. I'm not going to...there's no treatment beyond what I am getting at Mensah plus exercise plus Epsom salts baths. And stay far, far away from those drugs. There are other enzymes that could be involved, but just thinking that's what it is, that's what I need to do, is probably best for me mentally even if it's not proven.

 

I also found the book by Dr. Sarah Mayhill interesting. It's a little too technical, I'm going to have to look at it again later, but a lot of the info is on her website. Book is The Diagnosis and Treatment of Chronic Fatigue Syndrome, It's Mitochondria, not Hypochondria...or something like that.

[Meimeiquest]

Smaller decreases in lithium, avoiding the benzo, would be my preference.

Went to my new NP yesterday for a second opinion. She feels I should taper to tolerance, not rush it because (1) tapering lithium is so hard in the first place (2) she doesn't make important clinical decisions on the basis of one lab test as flukes do happen sometimes (3) your brain is more important than your kidneys in the hierarchy of needs, don't destabilize (4) my creatinine and all my labs are fine right now.. (5) Even if the benzo worked, then I'd have a big benzo problem. And are there any tests that I would like her to run to help me feel better about all this?

 

Definitely going with her opinion. Tragically, my pdoc who is on Cymbalta reminds me of me before I came undone on it. So another doctor bites the dust. I'm getting quite ruthless. But she'll be glad...she was really getting annoyed with my out-of-the box ness.

[Altostrata]

Good to hear the NP has good common sense.

[mattinsmom]

Oh I don't think there is anything ruthless in seeing what is unhealthy and walking away from it. I, too, am happy to hear that your NP has not only heard you but seems to have a decent head on her shoulders. I cannot even comprehend enzymes and am always so impressed by the effort you put in to learning to care for yourself. I know that you kinda have to as so few other medical people have the ability. You are impressive nonetheless. Wishing you a smooth transition/taper from lithium. mho - your body will recover as your dose decreases. 

[JanCarol]

Hey MeiMei!

I saw in your sig line, we are now on a similar taper of the Lithium! 

 

Has it been a whole year since we started talking?  

 

I hope this finds you well and having good sleep.

 

You are so awesome for what you have accomplished in this year!

[Meimeiquest]

Yes, JanCarol, it has been a year. Last month marked two and a half years of tapering for me. I think you're the one who has come a long way.

 

Yesterday I saw a new pdoc, integrative, because 1) my husband says I have to have a pdoc and 2) he just went to a conference on the Walsh protocol which I am on. He was actually very kind and very tentative...he said my history is very atypical if you look at it as a medication problem or as an illness. If you have ever been to an integrative doctor, you will know how unusual this is: he ordered no labwork and he doesn't sell any supplements.

 

Regarding lithium...this dose should not be hurting me, taper last because I may need it, but if so he would switch to lithium orotate because supposedly more enters brain, so you can dose lower with less toxicity to other organs. Keep checking basic labs with PCP.

 

Regarding sleep...go back to sleep dr (I need a new one) and be sure my sleep apnea is controlled as my sleep pattern sounds a lot like an apnea problem. Sleep is essential, best help he has seen is Total Amino Solution by Genesa, but may not be needed.

 

Regarding oxazepam....he sees this as a big problem. Recommends ramping up inositol, GABA, taurine, and possibly niacin and/or magnesium to taper more quickly. Just experiment and make sure stay stable. He said any supplement combination is safer than a benzo.

 

Some type of anti-inflammatory diet and managing food allergies is essential. May address gut health in more detail later.

 

He said my Mensah Medical labwork seemed too normal for my history and family history. Maybe 48 hours off supplements was not enough. He will call Dr. Mensah.

 

He said

I was breathing "too high" and gave me some breathing exercises to try to decrease my sympathetic overdrive.

 

Prior, I spent the weekend "CTing" coffee and 1.1mg to eliminate daytime oxazepam. Really more brilliant to do together than I imagined. And my husband gave me Saturday with zero responsibilities. It was awesome. One thing I have gotten from tapering....he is awesome too.

[Meimeiquest]

http://en.m.wikipedia.org/wiki/Hyperintensity

 

The above link is about hyperintensities in brain MRI's. It is something we have discussed before, but I can't find the link. I had a pretty severe case of this in a "random" MRI after a car accident at age 44. Several others have mentioned it.

 

Earlier this week a new pdoc told me Dr. Perlmutter of "Grain Brain" fame says they can be reversed with his diet recommendations...but the recommendations aren't easy.

[mammaP]

I love that your husband is awesome Meime, it gave me a warm fuzzy feeling to know he looks after you so well 

[Meimeiquest]

Overall my switch from oxazepam to inositol is going amazingly well. Down to 10mg (18.5 when started switching) at bedtime and so glad to have left those daytime syringes behind. Moving to full-time status in my job in January, but it will definitely be a stretch.

 

That's the good news. The bad news is the inositol seemed to stop working Sunday night for about 18 hrs. Diarrhea, sound sensitivity, irritability, and fatigue back. And then gone again. But I am going to camp out at 10mg through Christmas, just to be safe.

 

My nephew was prescribed inositol after his Prednisone/Levaquin debacle and my sister tried it for sleep as she is struggling after a two-week Prozac "taper" in the spring. They both felt it caused depression.

 

Had my very "spicy" daughter tested with Walsh testing. She has extreme pyrrole disorder, the KP's were 111. Dr. said with anything over 75 (nl is 0-9) you have to look for systemic inflammation or autoimmunity. So she had a boatload of traditional tests drawn this week.

 

On the lithium front, my PCP sent me for a thyroid sonogram. Multiple nodules, having two fine needle biopsies tomorrow. But my calcium level is down to high normal and my lithium level is finally dropping and I am off high blood pressure medicine.

[Wildflower0214]

Congrats!!

[cymbaltawithdrawal5600]

Meimei,

 

That is all great news! I admire you for persevering in your quest to find alternative treatments to reduce your med burden.