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Thread: Supplements Update (For My Fellow Mito Friends only) started by Prop1

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    Default Supplements Update (For My Fellow Mito Friends only) started by Prop1

    Dear Mitochondrial and Metabolic Disorders Forum:

    I have seen you grow from a haphazardly posted forum into a cohesive, informative group. I would hate to see ANY of you leave with your valuable knowledge and go to another forum. As Mike said, these changes were announced and althought downtime was a bit longer than thought, WE ARE BACK! The forums will gain in strength as the spammer's have been dealt a blow. The forum is in new hands now as John Lester has finally given authority for other's to continue what he started. You have a safe and secure forum to continue your wonderful work here. You have brought in many new people and anyone who only reads your forum has also been helped tremendously.

    I will personally transfer any thread you want from the archives to this forum if you ask me. I will do a sample to show you how. I want to do this because I have a special interest in these diseases.

    Please reconsider your postions to leave. NO forum is safe from crashing or going down for repairs or from spam and with this forum you have dedicated people ready to help you achieve your goals and keep your forum running as smoothly as possible.

    Thank you.



    Quote Originally Posted by Prop1
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    Let's try this again without the drama.....

    I thought I'd give an update on how things are going with the supplements since it's been over 2 months. The Ubiquinol CoQ10 is now at 100mgs daily. The L-carnitine is at 2000mgs daily, and I've added 2200mgs of Creatine to the mix. I'm also drinking 8ozs of 6 Star Muscleshake (33g whey protein, 16g carbs) for breakfast.

    I've been pushing myself to get a good idea as to whether the supplements have made a differences. So this is what I've noticed:

    * Exertion can be maintained longer before hitting "The Wall"
    * Recovery takes less time.
    * Aches and pains are worse.
    * Energy level after recovery isn't as high.
    * The need for pain relievers has increased.
    * Morning stiffness is off the scale.
    * No rhabdo to report.
    * My head is always in a fog.
    * Heat intolerance caused by inability to sweat is unchanged.
    * Carpel Tunnel is back with a vengeance.


    My conclusion at this point is that not enough improvement has been made to warrant the cost, but I have placed an order for 2 more months for this experiment. I'll have to think real hard in 2 months as to whether I want to spend more money.


    Quote Originally Posted by Kira
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    Sorry I didn't respond to your original post in the other thread. I will not repeat anything about the other thread's content other than to say I got distracted by it. Also, I'm really not feeling good lately (in the middle of a rhabdo), and have been exceptionally moody from the combination of pain, nausea, and overall stress.

    Anyway... Sounds like you've had mixed results. I don't think hardly anyone with mito gets really amazing results from any of the supplements except people who have a true deficiency of that particular supplement (ie people with primary carnitine deficiency) or really lucky people... plus the people trying to sell something might report dramatic improvement for other motives. I don't know that there's much of anything that works for true mitochondrial disorders other than avoiding flares & treating symptoms/complications.

    That said, sometimes the supplements and diet changes can be just enough to push you over that line between a period of relative stability vs. a period with frequent flares. Maybe they don't fix it all the way, but they make it a little better, and that little difference is just what you need to be able to function. That is kind of what the home IV fluids/glucose have done for me... they keep me out of the hospital for milder flares, and help keep some of the symptoms quieter, but I still definitely feel like I've got mito.

    Your supplement list is similar to what I'm doing, with the guidance of my doctor & my nutritionist at the Biochemical Genetics clinic. I do levocarnitine, just readded CoQ10 (ubiquinol) literally yesterday, B-complex (only re-added for the past couple of weeks), Ensure/Carnation Instant Breakfast/etc when not getting adequate oral intake, and the IV fluids w/glucose. We have talked about trying creatine again, and I have been on it in the past. I also had just re-added a multivitamin, calcium, & vit D about 4 days before this current flare started, but that's because of my overall crappy nutrition. (I don't blame this flare on taking that stuff... just haven't bothered with it while in the hospital.)

    We're thinking it's a coincidence, but my CK was kind of stuck/plateaued for the past 3-4 days and then finally came down today after restarting CoQ10 yesterday. This is not a typical flare for me at all and we are thinking there is an underlying trigger going on that's causing it, because I've had unexplained fevers off & on the past couple of months. I'm in the hospital right now and they have been pretty aggressive at trying to find a source for the fevers & unusual rhabdo episode, but nothing yet. In the meantime I am holding my own and might get out of here in the next couple of days since the CK has finally started to go down. While in the hospital, the only other stuff we're doing is frequent labs/monitoring, boatloads of IV D10 1/2NS (10% dextrose in saline) which is currently at 200 mL/hr, and treating symptoms & complications (pain meds, nausea meds, autonomic meds, fixing electrolytes, etc). We were trying to treat this flare at home initially, with around-the-clock IV fluids & daily outpatient labs, but it kept getting worse so they wanted me inpatient.


    Quote Originally Posted by Prop1
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    Yeah, I agree. I think they maybe helping my lows to be less steep and deep. I'm going to add Alpha Lipoic Acid to the mix. I was reading on MitoAction that it's an important part of the Mito Cocktail. Maybe that will help.


    Quote Originally Posted by Prop1
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    I got the Alpha Lipoic Acid (ALA) today. I took 400mgs this morning. From what I've read, I can go as high as 1200mgs. I'll gradually increase to 1200.

    Jeff (Riverdog), did you get some ALA?

    Kira, hope you're feeling well enough to go home today.


    Quote Originally Posted by riverdog
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    Nope, I haven't yet. I actually just sent an e-mail to you. I was wondering which type you bought. So I will get some in the morning. I will start out at the same dosage as you, hope it helps.
    Also, I hope you get feeling better Kira.

    Quote Originally Posted by Prop1
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    I bought the ALA from Walgreens this morning because that was all they had. It was buy one get one free. However, I just placed an order at Drugstore.com for the Doctor's Best Stabilized R-Lipoic Acid. So with the ALA being 200mgs per pill and the RLA being 100mgs per pill, and the RLA being twice as affective, the price works out about the same between the two.


    Quote Originally Posted by Kira
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    Thanks guys. I'm doing well enough that they sent me home this afternoon, but they sent me home basically doing the same stuff we were doing in the hospital... boatloads of IV fluids/glucose (at home, via my port), plus frequent outpatient labs & the same meds (just switched from iv to oral). Not feeling great but am substantially better than I was a few days ago.

    What happened was that I have been having unexplained fevers since March, which seem to be associated to when I use my port but I have had a couple sets of negative blood/port cultures designed to look for the most common bugs. This admission, they did more cultures and are holding this set for up to a month to watch for a particularly insidious set of bugs that cause bloodstream infections & endocarditis (infection of the lining/valves of the heart). Those bugs are called "HACEK" organisms. They also cultured, X-rayed, examined, or otherwise tested all sorts of other stuff. What we know is that I don't get below the 99s lately, spend at least part of the day >100.4, and every few days get over 101. I am seeing this Infectious Disease guru in a a couple of weeks and hopefully he will sort it out. In the meantime, my PCP & mito doc & inpatient doc are keeping an eye on labs that were already drawn, plus the labs I have to get in a couple days to make sure CK is still trending down.

    This was a weird CK because we weren't able to dx, and therefore tx, the underlying cause that triggered this flare. We know it's going something to do with the fever stuff but have no dx for that yet. I was briefly on oral antibiotics about a month ago, and felt great for a few days after... seems to be evidence of an infection. This rhabdo was unusual in that my Ck usually peaks within the first day or two, then comes down quickly. This time, symptoms started last sunday (5/21ish?) with muscles bothering me and fatiguing and hurting more than usual, but not that white-hot, can't use the muscles kind of rhabdo pain. I had a ton of cyclic vomiting early Tuesday morning, then got really intense muscle pain starting Tuesday morning. So, I did extra fluids and got outpatient labs daily, then we and waited to see what would happen. CK was minimally elevated Tues & Weds (500-ish), so we just did more fluids and home pain meds and labs and waiting. But Thurs it got MUCH worse so off to the dreaded ER, where I had a temp 101.2 upon arrival plus a CK about 6000. They were super aggressive with fluids & glucose, plus symptom control, so it didn't get much higher than 6500ish. However, it stayed plateaued around 5700-6500 for 4 days before started gradually climbing down... though more slowly than expected. That means that there was new muscle death occurring during those days that it looked "stable." CK comes down by about 50% each day once the muscle death stops... but since it was "stable" then there was ongoing muscle death. This is not typical for my flares, not at all.

    I'd still be there (hospital) if I didn't have the ability to do IV fluids at home, plus close follow-up with labs, etc.

    I am 100% sure that this flare was triggered by whatever's going on with the fevers. Most of the drs seem to agree. So now we have to figure out the fever crap or else this is going to keep happening.

    Anyway, enough babble. Today CK was down considerably... 1700s. Tomorrow should be <1000, and Thurs should be maybe 5-600. No major complications other than some electrolyte stuff and symptoms (PAIN, vomiting, etc).

    I'm going to bed... Thanks for the support, guys.


    Quote Originally Posted by Clashboy
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    I think the ALA helps. I just asked my Doc to send in a compound of the entire cocktail to my pharmacist as a liquid. I'm tired of taking 16+ pills a day. They say they can do it; however, they are going to substitute ubiquonone for ubiquonol.
    Here is the article that contains the dosages. Table 2 - pg. 418
    http://www.mitoaction.org/files/Mito...y%202009-2.pdf
    Brad,
    I just started taking Malic Acid in addition to the Creatine, I let you know how it goes.


    Quote Originally Posted by Clashboy
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    Quote:
    Originally Posted by Kira
    Thanks guys. I'm doing well enough that they sent me home this afternoon, but they sent me home basically doing the same stuff we were doing in the hospital... boatloads of IV fluids/glucose (at home, via my port), plus frequent outpatient labs & the same meds (just switched from iv to oral). Not feeling great but am substantially better than I was a few days ago.

    What happened was that I have been having unexplained fevers since March, which seem to be associated to when I use my port but I have had a couple sets of negative blood/port cultures designed to look for the most common bugs. This admission, they did more cultures and are holding this set for up to a month to watch for a particularly insidious set of bugs that cause bloodstream infections & endocarditis (infection of the lining/valves of the heart). Those bugs are called "HACEK" organisms. They also cultured, X-rayed, examined, or otherwise tested all sorts of other stuff. What we know is that I don't get below the 99s lately, spend at least part of the day >100.4, and every few days get over 101. I am seeing this Infectious Disease guru in a a couple of weeks and hopefully he will sort it out. In the meantime, my PCP & mito doc & inpatient doc are keeping an eye on labs that were already drawn, plus the labs I have to get in a couple days to make sure CK is still trending down.

    This was a weird CK because we weren't able to dx, and therefore tx, the underlying cause that triggered this flare. We know it's going something to do with the fever stuff but have no dx for that yet. I was briefly on oral antibiotics about a month ago, and felt great for a few days after... seems to be evidence of an infection. This rhabdo was unusual in that my Ck usually peaks within the first day or two, then comes down quickly. This time, symptoms started last sunday (5/21ish?) with muscles bothering me and fatiguing and hurting more than usual, but not that white-hot, can't use the muscles kind of rhabdo pain. I had a ton of cyclic vomiting early Tuesday morning, then got really intense muscle pain starting Tuesday morning. So, I did extra fluids and got outpatient labs daily, then we and waited to see what would happen. CK was minimally elevated Tues & Weds (500-ish), so we just did more fluids and home pain meds and labs and waiting. But Thurs it got MUCH worse so off to the dreaded ER, where I had a temp 101.2 upon arrival plus a CK about 6000. They were super aggressive with fluids & glucose, plus symptom control, so it didn't get much higher than 6500ish. However, it stayed plateaued around 5700-6500 for 4 days before started gradually climbing down... though more slowly than expected. That means that there was new muscle death occurring during those days that it looked "stable." CK comes down by about 50% each day once the muscle death stops... but since it was "stable" then there was ongoing muscle death. This is not typical for my flares, not at all.

    I'd still be there (hospital) if I didn't have the ability to do IV fluids at home, plus close follow-up with labs, etc.

    I am 100% sure that this flare was triggered by whatever's going on with the fevers. Most of the drs seem to agree. So now we have to figure out the fever crap or else this is going to keep happening.

    Anyway, enough babble. Today CK was down considerably... 1700s. Tomorrow should be <1000, and Thurs should be maybe 5-600. No major complications other than some electrolyte stuff and symptoms (PAIN, vomiting, etc).

    I'm going to bed... Thanks for the support, guys.

    Kira,
    I'm sorry I have not responded sooner - I went through a minor Rhabdo starting on this past Saturday. I was doing well up to that point.
    I don't know what I did this time to go into Rhabdo.
    In reading your post, I go through periods of fevers at night. Maybe a couple of days each month; but, only at night. Never thought to mention it here. They never figured out what is causing it - and, I don't have the port as you know.
    I wonder if anyone else has had these fevers? Jeff, Brad?
    I'm really sorry to hear that you had to go through this miserable experience, again.
    Are you going to cut-back from school for a while? Maybe take a leave to get rested up? I worry about the school thing, I absolutely understand why you are doing it; but, I could not handle going back to school if I had to and I just think it must be incredibly taxing. I can't imagine how hard it must be for you.
    Please take care and know I keep you in my prayers everyday.
    -Matthew


    Quote Originally Posted by Prop1
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    Quote:
    Originally Posted by Clashboy
    I wonder if anyone else has had these fevers? Jeff, Brad?

    I don't know if I do, but most summer nights I sleep with no covers because I get too hot. In the winter, I never can get warm. My head is very sensitive to heat and easily gets overheated. Most of that is because it's so hard for me to sweat.
    This is the first page of this thread. If you would like me to copy the rest, please pm me.
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