Mitochondrial Dysfunction in E4 carriers

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Julie G
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Re: Mitochondrial Dysfunction in E4 carriers

Postby Julie G » Mon Feb 02, 2015 6:12 pm

Russ, there's no doubt that fasting CAN strengthen mitochondria when it's applied strategically and appropriately. Keep in mind, the link I provided was offering general advice for a wide range of mitochondrial diseases, including glycogen storage disorders- where fasting might prove to be dangerous.

Alysson and Liz, my Sisters :D , we have MANY overlapping mitochondrial symptoms- as do many others here. Thanks for sharing your symptoms and treatment protocols. Alyson, I'm not sure WHY the efficacy of your regimen has waned over time- weird. Perhaps something about your methylation has changed or the B-complex wasn't targeted enough... In a separate thread, feel free to share your methylation SNPs and let others hack if you want suggestions.

My mitochondrial symptoms have included:
-MCI
-Migraines
-Fainting
-Neuropathic pain
-Dyautonomia
-GI Problems
-GI dysmotility
-Irritable Bowel Syndrome
-GERD
-Diarrhea/Constipation
-Pseudo-obstruction
-Vomiting
-Diastolic dysfunction
-Paroxysmal supraventricular tachycardia
-Hypoglycemia
-Respiratory problems/non-allergic rhinitis, mast cell activation
-Fatigue

My treatment for mitochondrial symptoms:
-A nutrient dense mildly ketogenic diet, mild CR, IF, Acetyl L-Carnitine, Alpha-Lipoic Acid, NAC, DHA, Vitamin C, D-3, LEF Super K with Advanced K2 Complex, B-12 (Methlcobalamin,) Metfolin, B-6, B-1, biotin, ubiquinol, reservatrol, vinpocetine, curcumin, citicholine, melatonin, magnesium. I skip all supplements 2-3 days a week. (EDIT: I added all my supps- not sure which specifically address mitochondrial dysfunction.)

On this treatment regimen, ALL of my previous symptoms are largely absent. I've never felt this strong/stable in my entire life. Even my diastolic dysfunction is reversed. I still take a very low dose OTC H1/H2 for MCA, but am experimenting with alternate day dosing.

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Re: Mitochondrial Dysfunction in E4 carriers

Postby Tincup » Tue Feb 03, 2015 9:20 am

Alysson,

OMG. Except for the L-tryptophan for the insomnia, the results were amazing, for a time. My malaise vanished, and my energy greatly improved. Unfortunately, all of my health problems weren't resolved, and the benefits have lessened over time. I have no idea why, except maybe I have built up a tolerance to these supplements and need higher doses?


My mantra - if something isn't working, do something different. You might try going off everything & see what happens, then add things back incrementally.

The serotonin issue is delicate. My ex went through a neutrotransmitter balancing program with extensive testing. I know it was very specific to the person and and certainly a "Goldilocks" issue. My own experience with tryptophan and sleep aids has been variable, and short lived. I'd have amazing results for two or three nights, then the exact reverse and made things became much worse. I have occasionally used Dr. Bredesen's program of 500 mg of tryptophan if I wake up and can't get back to sleep. I'm not sure it makes much of a difference.

A year ago, I tried adding in potato starch as a resistive starch for the sleep issue. The idea being that gut bugs make neurotransmitters. This worked pretty well for a few months and my sleep time/quality improved. Then it was like the bugs were making too much of something and I started waking up at 2 AM - wide awake. I quit the potato starch and things improved.

Hard to get it just right...
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Re: Mitochondrial Dysfunction in E4 carriers

Postby alysson » Tue Feb 03, 2015 12:42 pm

This discussion is so informative and helpful!

Julie, thanks for sharing your list of previous symptoms and your entire supplement protocol. You are an inspiration to me! The fact that you have overcome all of those symptoms gives me hope of feeling good again. I have a couple of questions for you:

1. How do you know that your diet is mildly ketogenic? Is there a test that can confirm that, or are you basing it on your macronutrient ratios, or something else?

2. When you skip supplements 2-3 days a week, do you have certain non-sequential days of the week that you skip them, or do you skip them 2 or 3 days in a row?

It might be that I need to skip supplements as well. I'm taking so many, and I imagine my liver would appreciate a break. I've heard a similar recommendation with Young Living essential oils, as they are potent plant medicines. I use these oils off and on.

And thanks for suggesting that I share my methylation SNPs in another thread and let others hack away with ideas for me. I'm totally open to that and would welcome input from fellow members.

George, I think I'll first try skipping supplements a couple days a week. If that doesn't help (or doesn't help enough), then I'll do as you suggest and stop all of them and add them back in one by one.

Of course, I don't know how that approach would work with the MEND study when it gets going...

One thing I've been doing is getting my supplements muscle tested by an applied kinesiologist. If a supplement weakens my muscle, it's my body's way of saying “stop taking it.” If a supplement strengthens my muscle, it's my body's way of saying “take it.”

I know conventional medicine doesn't believe in muscle testing, but it works for me. For example, that's how I learned I was gluten sensitive, as well as sensitive to dairy and several other foods. I also use muscle testing on my own for dealing with emotional issues, and it's enormously effective for me.

I must add that the last two times my applied kinesiologist tested those five supplements (B complex, L-cartinine tartrate, alpha lipoic acid, CoQ10 (ubiquinol form), and L-tryptophan), my muscle was weakened. So I stopped taking all of them, but within 1-2 weeks, I felt much worse. So I started them all again (except for the L-tryptophan, as it doesn't really seem to help anyway). Restarting them helped both times, but I still don't feel remotely close to how good I felt when I first started taking them.

So something new/different is going on...

George, I've had a similar response to tryptophan. It works a couple nights in a row and then stops being effective. I wonder if that's why the Bredesen protocol recommends using it only 3x per week? What are we supposed to do the other nights of the week?

Does your ex feel like the neutrotransmitter balancing program was effective and worth doing?

It is, indeed, hard to get it just right...
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Re: Mitochondrial Dysfunction in E4 carriers

Postby Julie G » Tue Feb 03, 2015 5:03 pm

1. How do you know that your diet is mildly ketogenic? Is there a test that can confirm that, or are you basing it on your macronutrient ratios, or something else?


I use a ketone meter; actually a dual glucose/ketone meter. I keep ketones low; between .5 to 2.0 mmol/L. As you're probably aware, practicing a ketogenic diet is somewhat of a controversial strategy for E4 carriers, as we tend to have an exaggerated response to dietary fat- in terms of elevated lipids. By using primarily MUFAs combined with CR & exercise (ALL of which create ketones,) I've been able to keep my lipids (LDL-P) in check. Research repeatedly demonstrates that E4 carriers have decreased glucose metabolism in the same brain regions as AD patients- starting in our 20s-30s. I suspect that mitochondrial deficiency affects MORE than our brains. That seems to be true for me as all of my prior health issues are dramatically improved or rectified since I've begun addressing my mitochondrial dysfunction.

2. When you skip supplements 2-3 days a week, do you have certain non-sequential days of the week that you skip them, or do you skip them 2 or 3 days in a row?


I don't skip them 2-3 days in a row. It started by accident. I would occasionally forget to take them and then would resume the following day. Over time, I realized I felt better not taking them EVERY day. I don't know if it's a hormetic effect or what, but my body seems to "like" skipping them a few days a week- saves $ too. In full disclosure, I still take DHA & curcumin EVERY day (even on skip days) prior to exercise- all three up-regulate BDNF. And, I always (even on skip days) take magnesium & melatonin for sleep- a necessity for me. SLEEP is non-negotiable ;)

I quickly glanced at your methylation SNPs, Alysson, we share a lot. I'll compare more closely later. I hope our Methylation Whisperer- Susan chimes in. I think I'll learn a few things too.

Tell me more about the muscle testing. I'm intrigued...

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Re: Mitochondrial Dysfunction in E4 carriers

Postby JulieAnnie » Tue Feb 03, 2015 5:16 pm

Here is another interesting treatment option: electrochemically reduced water (EWR)

Electrochemically Reduced Water Protects Neural Cells from Oxidative Damage
http://www.ncbi.nlm.nih.gov/pubmed/2538 ... t=Citation

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Re: Mitochondrial Dysfunction in E4 carriers

Postby Tincup » Tue Feb 03, 2015 7:56 pm

Alysson,

Does your ex feel like the neutrotransmitter balancing program was effective and worth doing?


The program was developed by Marty Hinz MD. You can read more here: http://neurosupport.com/about/ My ex went through a DC, Dan Kalish, trained by Hinz. http://kalishinstitute.com/

Yes, I would say she is very positive about it. She'd always had low hormones & bad PMS, that included migraines & depression. She went into menopause at 38 and was also put on bioidentical HRT - to get her hormones up to that of a normal post menopausal woman. The Hinz program would test urine levels of the neurotransmitters. You'd take certain amino acid precursors. Of course, what is in the urine is excess, so analyzing them was tricky and the tests always went back to Hinz's group for analysis. It took a number of years for her to get off the program, but I think she is much more "even" than she ever was before.

I did a little bit of the program, but didn't follow through as had a lot of other things going on in my life. I learned enough to know that things like 5-HTP that might help some, weren't right for me. Probably why tryptophan doesn't work really well for me. I'd tried it years ago, in larger doses and had negative effects.

I've tried working on good sleep habits. I go to bed earlier and work on giving myself a good shot at 7-8 hours of sleep. I still wake up, but my sleep quality is improved. I sometimes take the 0.5mg melatonin, but don't seem to have an issue getting to sleep. It is getting back to sleep after waking up.

Julie,

I might try the supplement "holidays," but I would never miss magnesium as it keeps me in afib remission, so I'd keep that up. I have done that a bit when traveling - I pare down to just magnesium, potassium and taurine - my afib supps. The 4-5 g/day of magnesium is non-trivial, so when I travel, it is always with a lot of white powder to make the airport screening interesting. Potassium chloride always shows up on the scanner, too. My protocol is to supplement magnesium to bowel tolerance. It is interesting how stress, or lack thereof, can change the tolerance. A few weeks ago, I had some stress at the office and my tolerance was 5g/day, that stress is gone, so now down around 4g/day. 18 months ago, we did a two week paddle raft trip down the Colorado River in the Grand Canyon. No outside access. My tolerance dropped to 2g/day. I should live off the grid somewhere...
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Re: Mitochondrial Dysfunction in E4 carriers

Postby alysson » Thu Feb 05, 2015 2:00 pm

The program was developed by Marty Hinz MD. You can read more here: http://neurosupport.com/about/ My ex went through a DC, Dan Kalish, trained by Hinz. http://kalishinstitute.com/

Yes, I would say she is very positive about it. She'd always had low hormones & bad PMS, that included migraines & depression. She went into menopause at 38 and was also put on bioidentical HRT - to get her hormones up to that of a normal post menopausal woman. The Hinz program would test urine levels of the neurotransmitters. You'd take certain amino acid precursors. Of course, what is in the urine is excess, so analyzing them was tricky and the tests always went back to Hinz's group for analysis. It took a number of years for her to get off the program, but I think she is much more "even" than she ever was before.


George, thanks for sharing your ex's experience with this program. I've not heard of Dr. Hinz, but I've heard very good things about Dr. Kalish as a functional medicine practitioner. However, the fact that it took a number of years for her to get off the program sounds quite daunting to me. I'll put this possibility in my back pocket for now.

I have the same issue as you of getting back to sleep after waking up. In my case, I wake up hungry and need to eat a snack. That wakes me up much more than just going to the bathroom. I take Klonopin to get back to sleep, but now I'm on a dose of 1.5 mg per night, and I don't like that. Having learned that benzos increase my risk for Alzheimer's, I'm motivated more than ever to find another way.

I can't imagine fasting 12 hour each night as per the MEND study protocol. I'm nowhere close to being able to do that.

If you are getting 7-8 hours of sleep most nights with improved sleep quality, without taking such meds, it sounds like you are doing pretty well with sleep.
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Re: Mitochondrial Dysfunction in E4 carriers

Postby alysson » Thu Feb 05, 2015 2:48 pm

I use a ketone meter; actually a dual glucose/ketone meter. I keep ketones low; between .5 to 2.0 mmol/L. As you're probably aware, practicing a ketogenic diet is somewhat of a controversial strategy for E4 carriers, as we tend to have an exaggerated response to dietary fat- in terms of elevated lipids. By using primarily MUFAs combined with CR & exercise (ALL of which create ketones,) I've been able to keep my lipids (LDL-P) in check. Research repeatedly demonstrates that E4 carriers have decreased glucose metabolism in the same brain regions as AD patients- starting in our 20s-30s.


Julie, thanks so much for answering my questions. I have a glucose meter but not a ketone meter. Obviously, I didn't even know there was such a tool available. I see there's at least one thread on ketogenic diets and will do some background reading. I have much to learn.

I wake up hungry in the middle of the night, every night, hungry and need to eat a snack of about 300 calories. If I wake up hungry especially early, like 1:30, I will likely wake up again hungry a second time. But it's usually late enough that I can't get back to sleep.

As I mentioned in my reply to George, I can't imagine fasting 12 hour each night as per the MEND study protocol. I'm nowhere close to being able to do that. At this point, I don't know what to do to even move in that direction, other than eat more fat (though I eat a fairly significant amount now).

I haven't had a lipid panel since August 2011, which is rather surprising. But my total cholesterol has always been on the low side, like 155 (with one exception). And I've never had my LDL-P tested. I'll be very curious to see what my numbers are now.

That one exception: In my early 40s, when I was eating refined wheat flour products, my triglycerides were through the roof. And my total cholesterol was something like 209. I gave up refined wheat flour, quickly lost 5-10 pounds, and my triglycerides went to a low, healthy number. (I don't have specific numbers as I don't have my medical records from that time.)

Up until then, I ate wheat, both refined and whole, without any obvious issues. I believe that my father's death in 1999, which was a huge stressor for me, triggered a cascade of events in my body that brought on the health issues I'm still dealing with today.

I suspect that mitochondrial deficiency affects MORE than our brains. That seems to be true for me as all of my prior health issues are dramatically improved or rectified since I've begun addressing my mitochondrial dysfunction.


Regarding what you've done to address your mitochondrial dysfunction, are you referring to starting a subset of the supplements you listed in a previous reply? If so, which ones do you credit with helping with this problem?

Today is my 1st supplement “holiday” (except for the ones I feel I need every day). Thanks for sharing your philosophy there.

This post is getting rather long, so I have a note to myself to reply to your query about muscle testing in another post.
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Re: Mitochondrial Dysfunction in E4 carriers

Postby rep » Wed Mar 04, 2015 3:34 pm

Genepool0304 posted Part I.
Parts II and especially Part III are worth a read.

by Lara Pizzorno, MDiv, MA, LMT

Beyond the Mitochondrial Tune Up - Part I: Delaying the Mitochondrial Decay of Aging
http://www.lmreview.com/articles/view/beyond-the-mitochondrial-tune-up-part-I/

Part II: The Methylation – Transsulfuration Connection to Mitochondria
http://www.lmreview.com/articles/view/beyond-the-mitochondrial-tune-up-part-II/

Part III: Restoring Mitophagy – the Key To Mitochondrial Rejuvenation
http://www.lmreview.com/articles/view/beyond-the-mitochondrial-tune-up-part-III/

Can it be as easy as NAC?

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Re: Mitochondrial Dysfunction in E4 carriers

Postby Julie G » Mon Mar 23, 2015 5:15 pm

Nice review on mitochondrial dysfunction and fatigue. Addressing mine has resulted in greatly improved stamina/energy.

Why Taking Care Of Your Mitochondria Might Be The Key To Health & Vitality
http://www.mindbodygreen.com/0-17678/wh ... ality.html

Association of mitochondrial dysfunction and fatigue: A review of the literature
http://www.sciencedirect.com/science/ar ... 741400004X


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