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giz9

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Reply with quote  #16 

First, I would like to apologize for the mention of dosage on this board.   I have been... away... for a while.    I started communicating on CVSA boards and listservs at 13.   I did that for quite a few years, but then my mother's health became more important to me than mine.   My father has had 3 heart attacks, quadruple (4) bypasses, and is still ticking.   So I have become the family nurse of sorts.

Many things have happened; I'm 23 now and am still battling personal demons, but decided that I wanted to be part of the community.   I just fell out because of prioritization.   I'm sure you all understand.

Anyway, many Energy drinks now contain loads of B vitamins to help the body produce Co Q-10 and L-Carnatine.   It just seemed to me that it is a wise beverage to ingest if one's physical constitution can handle the caffeine well.   Mine can, but everyone is unique.

Gizmo


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klconner

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Reply with quote  #17 
That's interesting.  I really have no idea what's in those energy drinks.  Maybe I'll read a lable next time I'm standing in a long line.  B vitamins have been discussed in combination with the other supplements.


We all fall into the no dosage trap from time to time.  It just comes so naturally that they sneek in when you're not thinking.


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ginny

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Reply with quote  #18 
I don't know about the caffeine but if caffeine is dehydrating and revs up your energy level then I wonder if you are depleting at the cellular level regardless of the added supplements.

B vitamins were removed at first because they can cause stomach upset.  Dr.  Boles noted that after CoQ10 has been established then he can add in a B complex and additional Riboflavin if needed.  The addition of B can be a real help.

Some people do have good luck with the non Pharm. supplements-- Kate, you can call the 800 number on the bottle and get information on the formulation.  I called on a bottle I bought at the CVS Pharm and the person I spoke to was confused.

Giz,one thing to be sure of is that your CoQ10 is gel caps and not the solid pill.

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ginny CVSA Moderator
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klconner

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Reply with quote  #19 
The role of caffeine in the digestive process is interesting  It does increase the chance of dehydration, but it also promotes gastric emptying.  It's pretty much a judgement call  you have to make for yourself. 

Here's a good overview of the digestive process.  Dr. Spring breaks it down into simple english so that it's easy to understand.  It also speaks about gastric motility.  I wish I had known about it before my gastric emptying tests.  My physiology instructor used it to teach from.
http://www1.fccj.edu/sspring/digestion.htm
kate

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mahler1987

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Reply with quote  #20 

Gizmo,
I too took both supplements for quite some time.  I purchased mine through Puritan's Pride.  They often run sales of 2 or 3 for 1.  I have no problems with soy so this was not an issues.

For many of us price is a definite concern and I simply could not justify the difference in cost.

I too found an increase in energy levels about a week - 10 days after starting them.  However because I have an auto immune disease in addition to CVS, I have stopped taking them as the increase in energy was enabling me to do more than I should have been doing.. pushing way more than physically I was capable of.  Not sure if that makes sense, but I have an energy crunch in my body to begin with and feeling peppier I would start doing more than I should have been doing.

Per information given to my by my physician, yes caffeinated drinks are dehydrating, to combat this, for every caffienated drink also consume an equal amount of water or non caffeinated beverage.  How this works on the cellular level.. who knows?  However my case of CVS has not been affected one way or another with my coffee or lack there of.  Without my coffee, yes I can be crotchety and cranky, and of course harder to motivate.  Since I use artificial sweetner in mine, one cannot argue the effects of the sugar.

If you body can handle the monster drinks, then in moderation I would say give it a whirl.  Again my motto in life is everything in moderation, unless you know it's a trigger, then avoidance at all costs.



Pattie


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trice

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Reply with quote  #21 

My doctor has a patient that has CVS and drinking coffee everyday has helped them keep their CVS in control. She doesn't know if it is the caffeine or the actual coffee but this patient swears by it. I tried it and it didn't do anything to me besides giving me diarrhea (my body can't handle much caffeine). Might be something to try.

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momoftwo

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Reply with quote  #22 
When my son was first diagnosed at age 4, his GI wanted him to have large quantities of caffeine (NoDoz) when he cycled. (Something about what caffeine does to the blood vessels that would hopefully help stop the cycle.) He has been on the supplements for a year now and they have made the biggest difference in him. I buy the Q10 from Epic - I know it's expensive but it is much less than a week's stay in the hospital and since it seems to be working I'm afraid to change brands.

Heather
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ginny

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Reply with quote  #23 
Heather, I assume you let Epic know that you are using the supplements to treat a medical condition and receive their discount?  Makes it a bit more affordable.  I think I would not worry about changing from OTC LCarnitine to Carnitor if you have drug coverage on your medical plan. 

If CVS patients need deep heavy sleep to get out of a cycle then the caffeine does not make much sense to me.  I understand caffeine and migraine/ vsacular headaches so maybe that was part of the idea about No Doz?

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ginny CVSA Moderator
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klconner

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Reply with quote  #24 
Heather ~ If they work, and you can afford them, then I'm all with you.  Don't stop a good thing.

Trice ~ My mom has the same problem with caffeine.  Her morning Dr. Pepper is what she counts on to keep her regular.  For years my brother and I were convinced that prune juice was the main ingredient.

I'm big on either coffee or colas shortly after I wake up.  Especially if I had a big dinner the night before or I'm eating a big breakfast. I'll grab one when I start to get an upset stomach as well.   I always get strange looks when I'm downing coffee for a stomachache.  It relieves the pressure in my stomach and keeps me from feeling like peristalsis is pushing food up instead of down. 
kate

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haymanja

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Reply with quote  #25 
May I just add two words on mitochondrial theory. Many of the symptoms of CVS relate to neuroendocrine and autonomic nervous dysfunction. The cells in these two physiological systems contain neuroendocrine granules with stored peptide hormones and neuroamines. The granules also have a high concentration of ATP which functions partly as an osmotic regulator, partly as a buffer, maintaining low (acidic) pH, and after secretion, may act as an antagonist to other secreted hormones. ATP is generated in mitochondria and if there is mitochondrial failure ATP production is compromised, neuroendocrine granule stability is lost and there is diminished extracellular regulation of excitatory peptide hormones.
Second word – Charles Darwin, of Evolutionary fame, suffered from CVS. He frequently complained of 'rheumatism' and 'lumbago', symptoms which, no doubt, were linked to his underlying mitochondrial disorder.

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jboelter

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Reply with quote  #26 

My husband has suffered from CVS for about 6 years now and it was getting gradually worse.  Thanks to this website and all of the information, we tried the LCarnitine, COQ10 combination back in January 2009 and as I understood it would take several months to see an impact, his last ER trip was in May 2009!  This is the longest time we have gone since this whole thing began!  I finally have hope again that life can be relatively normal, something I thought would never happen!    He went from having episodes sometimes as frequently as weekly or might go 3-4 weeks to no episode in 7 months!  We are so thrilled!  Keep the hope!

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ginny

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Reply with quote  #27 
I don't know if you will want to change anything that is working but there are indications that adding in B complex can make for further improvement.  Dr. Boles did say that the patient usually needs to have been taking CoQ10 first before being able to tolerate B.

Congrats on the success! 

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ginny CVSA Moderator
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jjbeck

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Reply with quote  #28 
Thought I'd jump in here.
I am one that is very careful when it comes to supps & for several reasons do believe it is important to find good quality supplements.

Pure Encapsulated makes pharm grade supps. They get their L Carn from Sigma Tau, the makers of Carnitor. I was pruchasing from them for a while as they did not put as much junk in their supp as is in Carnitor.
 As for carn & coq10, as an above poster listed,
http://www.Epic4Health.com  sells both and both are good quality.
They give discounts for mito pts.
Also know not all co q10 will be as effective.
Solace Nutrition makes some mito supps. This company makes supps for children & adults on medical diets and so forth.
 Since we are seeing a mito doc,we now have our mito cocktail compounded. This has saved us a ton of money. Ins covers.
I was surprised to hear that most ins will cover these supplements.
We order from America's Compouning pharm. A perscription is required. You can email or call them w/ your ins info & they will check to see if you have coverage for this.
They are an excellent company, offer free shipping and they ship very fast.
Here is a link to their pharm:
http://www.accrx.com/

Here are some links on supp info re mito:
http://www.mitoaction.org/category/blog-categories/medical/mito-cocktail/supplements
http://www.mitoaction.org/podcasts/question-and-answers-compounding-pharmacists
http://www.mitoaction.org/forums/mito-cocktail-researched-brands-vitamins-purity

HTH,

Jen

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Jen hx of EDS, Dysautonomia (w/ lots of CV), interstitial cyctitis and possible mito
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Nhjjhce

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Reply with quote  #29 

Hi My son was prescribe co Q 10 today he is already a active young boy do many people see the side effect of hyper activity.


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Hannah Tapley
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ginny

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Reply with quote  #30 
No hyper activity that I have heard about.  The extra energy is not of a hyper type but is cellular.  If you are seeing hyperactivity notify your doctor.  Last I knew the beginning dose is in the morning and after a time is divided throughout the day (two or three times) but probably no CoQ10 after around 2 in the afternoon.



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ginny CVSA Moderator
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