Discussion in 'Latest ME/CFS Research' started by leelaplay, Dec 21, 2009.
You can Try Spectracell Labs in th United States.....
Ever since my mitochondrial diagnosis (based on my muscle biopsy) my Mito Doctor put me on a high dose CoQ10. I wouldn't be upright AT ALL without it. My blood levels are probably 8 times normal for CoQ10! They haven't yet found a way to definitively test CoQ10 blood levels.I take Vitaline CoQ10.
If you join the UMDF (United Mitochondrial Diseases Foundation/ www.umdf.org) then you can get huge discount (50%) on buying CoQ10 from Vitaline. I think it is the best product, and it is used in many FDA trials for Parkinsons and mito etc. In fact it has "Orphan Drug Status." UMDF also gives a discount on another coQ10 product from Tishcon but when I tried that I had a very bad reaction to it because of the way it is coupled with some other product which is supposed to make it more "available" but instead made me sicker. So the Vitaline product is the one I'd recommend and is used by all the mito doctors for their patients.
Vitaline: 800-287-5972 I think it's about $200 unless you join UMDF and then it's $80 a bottle. So the UMDF membership easily makes the savings very well worth while. I thought I had posted this already on this thread but couldn't find it on a search. ~FernRhizome
I tried taking coQ10 last week but only took it for two days and I started to get symptoms and feel worse. I got hot flushes and chills and just felt bad.
what kind was it? Tishcon can cause problems (at least in me). But also, you may not have a coq10 deficiency! So you'd need a mito diagnosis to know for sure...
Hi Fern it is Ubiquinone. My recent tests show that I need coq10.
Ubiquinone is the oxidized active form and ubiquinol is the reduced active form.
I wonder if the ubiquinone is causing more oxidative stress since it is oxidized ...
Have you tried the ubiquinol form ?
No I haven't - thanks for the tip.
(I like your name!) Thank you for this good information. I definitely benefit from COQ10 supplementation and would like to get the Vitaline form, as you recommend it. I looked at the website for UMDF and it looks as though one needs to be an "Energy" member, paying $50 per year to get the 60% discount. Is this so or is it possible just to be at the Hope level, for a free membership? Always trying to save money--though it looks like a great organization to support too. Please advise.
I would suggest that you call UMDF and ask. I know in years that I couldn't swing the full membership, they worked with me on it. I do have an "official" mitochondrial diagnosis and doctor's letter to be on CoQ10, but I don't think that matters. I didn't have to provide anything official. UMDF is CFIDS friendly as they recognize that we are a huge group that can only be of help in getting public recognition for mito diseases, rather genetic or acquired. So give them a call and ask. I think they will help you out. Good luck. ~FernRhizome (& thanks for the name appreciation!)
Hmm, isn't ubiquinone the "standard" CoQ10 supplement? I thought 90% of was it is converted into Ubiquinol (from what i've read)? How does it cause oxidative stress? All i'm seeing is "it's a great antioxidant" but they're the descriptions on the supplements.
Are there any major differences between the 3 forms.... ubiquinone, ubiquinol and the analog form Idebenone?
And for anyone else out there, what would cause depletion of CoQ10 in the body? My plasma coQ10 is tested low at .44 (.46-1.72 mcg/mL) but I have really high glutathoine levels which tells me maybe something isn't wrong with my methylation. I have no idea what or where coq10 comes from or what causes it to be low.
Since ubiqinone is the oxidized form, I assume it would cause oxidative stress as it's converted to ubiquinol. I'm just saying that since that oneperson reacted to ubiqinone it might be worth trying the reduced form.
I don't know what the standard form is.
Ubiquinol Co Q lowers my blood pressure which is not good for me. It did the same thing to a friend with high blood pressure.
I've been taking Ubiquinol ever since reading how much better absorbed it was than ubiquinone, for about two years now, and it has not lowered my high blood pressure at all. I wish it would. Maybe I am not taking enough to cause that. I can't afford the recommended amount.
My friend's blood pressure dropped down from 154/95 to 111/85 with just 100mgx2 a day. We both used "Healthy Origin" brand. My Co Q10 level is very good, but I wanted to give it a go based on Dr.Myhill's recommendation.
In my case, I took CoQ10 when I first got sick and it made me much worse. I couldn't take it at all. Made me feel sicker.
maybe it's a function of methylation? I've been on Freddd's methylation protocol, and he recommends using CoQ10 only after we have gotten some methylation going.
I didn't know about the differences between ubiquinone and ubiquinol, thanks for explaining that, Suzy. Didn't know about the blood pressure thing, either; makes sense as it is a heart supplement.
I also don't know about the plusses and minuses of various brands, but if you're looking for lower prices, try http://www.swansonvitamins.com/ or www.iherb.com.
I have tried many brands of COQ10 and in the past when I had more funds have taken as much as 300 mgs. per day, which is the recommended amt. for fibromyalgia, which I also have, but have never had my blood pressure go down.
It did go up some the first couple of weeks when I added the B12 lozenges, but it is not affecting it now.
Since way before I started the B12 lozenges, my systolic blood pressure has been rising. My diastolic pressure is perfectly normal. This gap is called pulse pressure and is more important for heart health than the blood pressure reading itself. A large pulse pressure is very bad,and so is a very small one. Fifty pts. between the two numbers is normal. So, this may have nothing at all to do with supplements like COQ10, and may be another heart problem caused by a virus or some other factor. Currently, in spite of a high dose of meds, my BP is running about 150/76.
I also have supine hypertentsion, a malignant condition in which systolic pressure rises dramatically when laying down, in my case to about 180/80. I take 2 of my 3 daily doses of BP meds at night and sleep almost sitting up, because that helps it.
When I stand, my systolic pressure immediately drops down at least 30 pts. and sometmes as much as 50 pts. If I had low blood pressure, like so many of you do, this would be considered orthostatic hypotension, and/or a sign of severe adrenal fatigue, and I would probably pass out.
Have you ever tried any Chinese herb blends for your conditions, klutzo? Please forgive me if you've written about this already, my memory ain't what it used to be.
Considering the state of my memory, I would not remember if I had already written about it either, lol!
Yes, I have tried herbs, from a TCM doctor, along with acupuncture, and on my own with things like hawthorne. No help. Samento, the Lyme herb I took for four years, did lower my BP a little bit.
In fact, even conventional medicine failed with the first TEN medicines they tried!
For four years I struggled with high doses of minerals as my only treatment, and that only helped a little, but it did help. Then I happened to read a small article in a fibromyalgia newsletter about how clonidine can help some fibro patients with both pain and overstimulation, but it is a strong blood pressure lowering med, so the many who have low BP can't use it. I took the article to my doctor and asked to try it. It worked immediately, and also got me off all pain meds, permanently. I don't even take Tylenol now, and I used to take Darvocet daily.
My cardiologist thinks that because clonidine is also an anti-seizure med and is the only med that lowered my blood pressure, it is very likely that my Lyme is the cause of the high blood pressure, but he has no idea how, except that it may be related to the sympathetic dominance in the autonomic nervous system that Lyme causes. This was a big change in opinion for him, since he always thought it was genetic before, since both my parents had high BP, and most of my other older relatives on both sides had high BP as well.
Clonidine is considered a last resort and a "bad drug" by most doctors since it has a viciously dangerous rebound effect. You do NOT want to be too late with a dose! For me, it's been a necessary and helpful evil, but I would not recommend it to anyone as a first choice for high BP treatment. Most people who take it use transdermal patches for this reason, to prevent rebound. I can't take them, becaue my ins. won't pay for them, and because I am allergic to plastic bandages, and 51% of people who use transdermal clonidine have allergic reactions to the bandages, which then translate from the bandage to the drug itself. If that happened to me, it would leave me up the creek without a paddle.
Blood pressure accuracy
I posted the following in the thread "Blood Pressure: TOO HIGH", and thought it might be helpful posting it here as well. I had been noticing increasing blood pressure problems over the past 6-7 months...when it turns out my blood pressure was normal, probably the entire time. See below for details.......
THE IMPORTANCE OF USING THE RIGHT TYPE OF CUFF TO CHECK YOUR BLOOD PRESSURE:
As last reported, I went to the docs on December 30th, but saw one of the 'temp' docs -- my regular doctor wasn't in that day. And although the BP was up 158/80ish when the nurse took it, and then down to 148/80ish when the doctor took it 15 minutes later...it was still too high.
So they asked me to come in 2 weeks later (Jan 14th) before prescribing any BP meds...just to double check. And I will never speak ill of my medicaid doc again...
The nurse brought me into the room and strapped the cuff on my arm. As always, I was trying as hard to stay calm as possible so that it might be lower. Ha! It was HIGHER again...160/78.
10 minutes later, the doc came in...and was thoroughly puzzled, as my BP had always been low or 'normal' for years and years. So she decided to use a DIFFERENT CUFF...the smaller size, rather than those larger inflatable-balloon type cuffs...and sure enough, my BP was 128/78. She waited a few minutes, then took it again, got the same result. Then just to make absolutely sure, she took my BP using my other arm, again with approximately the same result. All the other readings...were all erroneous, because the wrong type of cuff was used.
She said that the larger cuffs are made for heavier or overweight folks, those who tend to typically have elevated BP. Apparently that larger cuff helps compensate for the larger arm with more bodyfat, and thus it has to be pumped harder to "find' the blood pressure reading. When a cuff like that is used on pencil-necked geeks like myself...the readings can be completely inaccurate.
SO...IF YOU'RE THIN, SKINNY, UNDERWEIGHT...have you doctor use a small or regular-sized BP cuff (the kind with a simple, thin arm-band) so you'll get a more accurate reading.
I went to a different doctor yesterday, and at the end of the appt, they took my BP (using a small cuff), and it was 118/68.
HOPE THIS HELPS...?
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