Baby girl, dilated miocardyopathy from Argentina, need help

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Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » di jan 13, 2015 7:21 pm

Hi Willy and Aleta,

About the amounts,

I think that the Q10 Lara is taking is the ubiquinon. And this is oke. But i am not happy with the amounts!
I believe that her doctor doesn`t know what he/she is doing, doctors don`t know not much about nutritions its not a big part of their education.


CoQ10 has two basic functions, energy production and antioxidant protection. Ubiquinone is the oxidized form of CoQ10 used to create energy in the mitochondria of the cells. (We tend to think of “oxidized” as bad, yet in this case it simply means that it is in the form needed to produce ATP.) Ubiquinol is the reduced form of CoQ10 and is used to provide antioxidant protection for each cell.

The body needs both forms, and it is CoQ10’s location in the body determines the form it takes. Inside the cells, where energy is produced, Ubiquinone is in needed. Outside the cells, in the blood and on cell membranes, Ubiquinol is needed and works as an antioxidant. Together Ubiquinone and Ubiquinol form a redox pair which means each one can be easily converted to the other by the body.

Given the fact that the body can switch the two substances back and forth to meet its own requirements, the argument that Ubiquinol is the “biologically active” form of CoQ10 is not valid. Claims have been made that Ubiquinone is viewed as inferior to Ubiquinol and that adults over 40 have difficulty-reducing Ubiquinone to Ubiquinol yet a recent human study indicates otherwise and that it is not true. Also all Ubiquinol found in animal protein is converted to Ubiquinone through the process of cooking before it is eaten.

Similarly, Ubiquinol taken as a supplement is quite unstable in the stomach and is converted back to ubiquinone before absorption. This means that no matter which form of CoQ10 the consumer chooses to ingest, it’s ubiquinone that is absorbed into thebody.

Perhaps more importantly, in the four years since Ubiquinol was presented as an alternative to Ubiquinone, only one human clinical trial on the substance has been published in the peer-reviewed scientific literature. In marked contrast, there have been hundreds of clinical studies showing ubiquinone is an effective supplement for a wide variety of illnesses and conditions.

Ubiquinol does appear to have one advantage. It is more bioavailable than the dry powdered forms of ubiquinone that have been widely commercially available. In a head-to-head single-dose study, oil-based Ubiquinol was found to be 60 percent better absorbed than powdered ubiquinone, and that percentage may increase with longer-term supplementation. However, Ubiquinols’ increased absorption over ubiquinone powder is not entirely surprising, given the fact that CoQ10 is primarily lipid-soluble, so it needs to be in the presence of oil to be absorbed. To get the same absorption with Ubiquinone just take it with fat, raw nuts, coconut oil, flax oil, or avocado.

Despite its higher bioavailability than powdered ubiquinone, Ubiquinol has several drawbacks. First, it’s significantly more expensive. Second, it’s hard to work with. Manufacturers must take great care to protect Ubiquinol from exposure to air, which causes it to change back to Ubiquinone — completely defeating the purpose of using it. Third, delivery options for Ubiquinol are very limited; the only way to encapsulate it is to suspend it in oil in soft gel form.



Ubiquinone =oxidized form
Ubiquinol = reduced form

Inside the body 80% of the Co Q-10 exists in the reduced ubiquinol form. Ubiquinone, the oxidized form, when taken as a supplement, is quickly reduced into ubiquinol as it is absorbed. The fraction of reduced to oxidized Co Q-10 found in food varies considerably but in most, the majority is ubiquinone and ubiquinol makes up only about 17 to 35% of the total Co Q -10 content.

But here is the catch, Ubiquinol is better absorbed than ubiquinone. In rat experiments the ubiquinol is absorbed twice as well as ubiquinone.

My first bottom line was to figure out which products increase blood levels of Co Q-10 the most. Of course no published study cleanly compares all the various products side by side. One has to patch together information from various studies, hoping the methodologies are similar enough to yield results that are comparable. Let’s assume they are. (which is a weak assumption but it’s the best we can do at the moment)

There has been a steady progression of improvement over the years. Blood baseline levels of Co Q-10 are typically around .65 mcg/ml. The crystalline powders we first used at a dose of 100 mg/day taken for four weeks, double blood levels to about 1.35 mcg/ml. (Stogsdill 2006)

Absorption is clearly improved by mixing the crystalline ubiquinone with various fat delivery systems. The ‘softgel’ capsules from the late 1990s are advertised to increase levels to 2.56ucg/ml (at 60 mg/day for four weeks).

With time the way the Co Q-10 crystals are blended into the oil got fancier. For example Q-absorb™ that uses a “proliposome lipid-soluble delivery system” is advertised to increase Co-Q10 levels [100 mg tid] to 3.64 ucg/ml, that’s about 3 times over baseline. (It’s also triple the daily dose as in the earlier mentioned papers) (see what I mean by this being a weak assumption)

Now there is a ‘crystal free’ COQMAX CF ™ that claims to have emulsified the Co A-10 moleules into the oil without crystal formation. This version raises blood levels to 3.43 ucg/ml after 28 days. (Xymogen) We’ve been using this at our office for a number of years.

Now along comes ubiquinol.

We have one study on absorption of ubiquinol that was sponsored by Kanek, a the company that manufactures it. (Hosoe 2006) The study looked at both safety and absorption and found no safety concerns. They report blood levels increased more with higher doses. After 28 days taking 300 mg doses per day after breakfast, ubiquinol levels increased from a baseline of 0.66 to 8.28 mcg/ml. This is something like an 11 fold increase.

This got my immediate attention.

Lower doses of ubiquinol yielded less impressive results. At 90 mg per day, ubiquinol levels increased from a baseline of 0.57 to 2.84 mcg/ml. At 150 mg per day, ubiquinol levels increased from a baseline of 0.65 to 3.84 mcg/ml. These results were only slightly higher than prior results achieved though older supplements.

Certainly if you compare this with plain old co Q-10 powder that increase levels to only 1.35 mcg/ml, these numbers look really good.

That’s the good news.
The bad news is that this is about all we know about using ubiquinol in people. Over the last 30 years there have been numerous clinical trials giving people ubiquinone. To date we have only two studies using ubiquinol in humans. The first (Hosoe et al. 2007) from which we pull this data looked at toxicity and absorption. A second in August 2007 used ubiquinol in heart failure patients. A third from that December looked at ubiquinol use in children with trisomy-21 gene.

That’s it.

While there are a multitude of studies using older forms of Co-q, there are almost none published using Ubiquinol.

Quest Labs will measure Co Q-10 levels for you. This won’t do much good as they only quantify results up to 4 ucg/ml. Higher results are simply reported as “>4” and trust me patients are not thrilled to pay the cost of the lab test (which isn’t cheap) to learn that. They like to see numbers.

Ubiquinol does increase serum C0 Q-10 above 4. I can’t confirm how much higher I’ve gotten patients.

If ubiquinol raises blood Co Q-10 levels higher than other forms of Co Q-10 do, can we assume it will have the same therapeutic action as earlier less absorbable forms, only more so?
If doubling serum Co Q-10 levels is helpful, does tripling, quadrupling or increasing it by a factor of eleven provide more and more benefit? Do the benefits of increasing blood ubiquinol levels continue to increase with dose or is there simply a threshold that needs to be crossed to get maximum benefit and above which further increases do not accrue further benefit? These are the questions.

More is not always better. Yet, sometimes it is.
At this point we don’t have the answers.

There may be subsets of the population in which ubiquinol is superior. Some people may have trouble converting ubiquinone to ubiquinol. Or perhaps, digestive problems may limit absorption of the plain or fat ubiquinone products. There may be certain conditions where we want all the Co-10 in the blood we can get and other conditions that simply doubling baseline levels will do the trick.

As much as I had hoped to arrive at a definitive answer at about this point, I’m not there and may be force to resort to the cop out of the educated and say more research is required. While we wait for that to happen, here’s what I’m doing in practice. As serum levels of ubiquinol appear dose dependent, I’m going to try patients on different doses and see if they can feel the difference symptomatically as we increase to high doses. If they don’t report further symptom improvement, I’ll keep them at the lower doses and presumably the ‘lower’ serum levels.
[This approach reminds me of a discount grocery store chain in the midwest called Hy-Vee. Their motto is, “If you can’t taste the difference, why pay the difference?” ]

Willy,

I really believe that the amounts must be the same as we advice to our dutch children. Never change a winning team.

This doctor doesn`t know whats helping Lara, the supplements she/he describe or the regular medications? So keep continue :o

I think that Lara should use the same protocol as the other children and the amounts she is taking right know are to high. Its just a toddler, so be carefull!

If the absorption of ubiquinon is 60% less then ubiquinol, she is still taking to much.
150 mg ubiquinon 60% is 90 mg left 60 mg.

If she is taking the ubiquinon with a little fat the absorption is higher.


greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di jan 13, 2015 10:35 pm

I understood everything, BUT... since she is been improving in the last two appointments, it would be wise to give her less of anything?

I see the point in "never change a winning team", so you got me thinking.

What could be the side effect in giving Lara more Qo10 than she needs?

(I´m so tired)

Corrij (therapeut)
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Corrij (therapeut) » di jan 13, 2015 10:46 pm

Hi sweatheart,

Coenzyme Q-10 is POSSIBLY SAFE for children when taken by mouth.
While most people tolerate coenzyme Q-10 well, it can cause some mild side effects including stomach upset, loss of appetite, nausea, vomiting, and diarrhea. It can cause allergic skin rashes in some people. It also might lower blood pressure, so check your blood pressure carefully if you have very low blood pressure. Dividing the total daily dose by taking smaller amounts two or three times a day instead of a large amount all at once can help reduce side effects

Let it rest en try to relax a little :D
Tomorrow is another day, youve done enough today.
Enjoy looking and playing your lovely daughter :D

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » di jan 13, 2015 10:51 pm

Thank you Corrij, you and willy been there is like hug!

About the fuids: I´ve just got a talk with Lara´s pediatrician. She told me that the fluids realeased by the diuretics come from another place, that in summer we need fluids for the intestine, and to be very careful on kid to not get dehydrated because all the fluids she is lost with diuretics.

Also said that the sound we heard is maybe her laringe inflamated because she might catched my cold or sebastian´s. I have to make a steam bath to try to lowering the inflammation.

And after that I´ll play with Lara and Benjamin! :)

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 1:29 pm

Also said that the sound we heard is maybe her laringe inflamated because she might catched my cold or sebastian´s.
That is exactly what I heard!

Start with 2 x 1000 IU vitamin D until the reference problem is solved

How is the Q10 called. Can you ask the pharmacy? I know that it is powder and that the bioavailability is not so good so you metabolic docter prescribed a higher dosis then normal
Met vriendelijke groeten,

Willy Witsel

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Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 2:26 pm

One thing at the time

1. sort out the reference range voor vitamin D, my calculation said 20 - 60

2. find out the product name of the Q10 your pharmacy is providing to you
Met vriendelijke groeten,

Willy Witsel

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Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 2:35 pm

Willy schreef:
>> Aleta I saw your JPG with the statement that above 150ng/ml vitamin D is
>> toxic
>>
>> But that does not mean that the upper level for Lara is 150ng/ml
>>
>> The Dutch reference is 50 - 150 nmol/l
>>
>> If you convert that into mg/ml you get
>>
>> 20 - 60 ng/ml
>>
>> Look at this website
this is the current issue for Aleta to check with here doctor in BA
This is the website http://www.endmemo.com/medical/unitconv ... min__D.php
Met vriendelijke groeten,

Willy Witsel

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Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » wo jan 14, 2015 4:38 pm

Ok, is taking to long for our friend to research for us the Vitamin D ranges, so, I found some stuff on internet.

What I think, but I don´t know for sure, is that ranges can change from country to country?

"Because different laboratory methods used to measure the concentration of 25 (OH) D, and the difficulties in establishing the reference limits of normality for all age groups of the population, there is currently no consensus on serum defining insufficient vitamin D for infants and children,
Most authors consider vitamin D deficiency when the concentration of 25 (OH) D is less than 50 nmol / L (<20 ng / mL) and consider that there may be some impairment of vitamin D when the concentration of 25 (HO ) D is 50-80 nmol / L (20 to 30 ng / mL)"

"Others suggest that a serum 25 (OH) D is healthy between 75 nmol / L and 125 nmol / L (30 ng / mL and 50 ng / mL)"


"The normal range is 30.0 to 74.0 nanograms per milliliter (ng / mL)."

https://translate.google.com/translate? ... edit-text=

"NORMAL VALUES OF ANALYSIS OF 25-hydroxy Vitamin D
The normal range is 30.0 to 74.0 nanograms per milliliter (ng / mL)."


I can´t belive this could be such a hard issue to figure it out, and the range references in one of the best labs in BA were wrong!

I´ll call the pharmacy later and get back to you.

Lara is better today, now she is tacking the morning nap :)

cheers

Ale.

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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 4:49 pm

They are wrong.

Or...........

Not clear what they mean with the 50 - 150 range

So.......

We go for my calculated 20 - 60 ng/ml

That means that Lara got a to much

The vitamin D2 in the multi vitamin is wrong she needs D3

So 2 x 1000 IU per week and in march a check if the blood values are all right

Issue vitamin D closed
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Willy Witsel

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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 4:52 pm

Willy schreef:One thing at the time

1. sort out the reference range voor vitamin D, my calculation said 20 - 60

2. find out the product name of the Q10 your pharmacy is providing to you
now we go for point 2
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Willy Witsel

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Aleta
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » wo jan 14, 2015 7:14 pm

Point 2: Qo10 we have is Ubiquinone.

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 7:31 pm

But it is powder based, right?
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » wo jan 14, 2015 7:39 pm

yes, is a capsule filed with an orange powder. I take the powder out and solve in water or milk.

Willy
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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Willy » wo jan 14, 2015 9:31 pm

In the past my guess was that powder based Q10 is only 10 - 20% bioavailable compered with oil based products. But I am not sure about this.

Found some science that says that the old powders are not very much bioavailable

So 150 mg powder = 15 - 30 mg oil filled capsule Q10

But this is my guess!!!
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Willy Witsel

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Re: Baby girl, dilated miocardyopathy from Aregentina, need

Bericht door Aleta » do jan 15, 2015 10:58 pm

Is that to much or to little?

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