clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I gave my daughter 100 mg of CoQ10 in the morning and then again in the evening (200 mg total).
On the second day she complained of headaches, sinus congestion, and noticed she had not gone to the bathroom in two days.
I don't consider this bad necessarily as many of our medicines and remedies cause reactions and we think of this mostly as a good sign. It was just a little unexpected.
I think it just reinforces the idea of going slow with CoQ10 as with anything else. The recommended dosage is around 400 to 1200 mg.
Thanks,
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Claire,
I've been taking CoQ10 as a heart-healthy supplement since long before Lyme, and my Lyme practitioners told me to stay on it.
However, the 1,200 mg/day dosage you mentioned was what was used in studies with Parkinson's patients. I've rarely seen that high a dose recommended otherwise.
I realize we each settle on dosages with our own Lyme practitioners or our own research. But I'm just curious if you've heard that the 1,200 mg. dosage is recommended for Lyme patients. I have tremors, so I'm interested.
I'm like your daughter, I have to start out at small doses of anything! You just never know the reaction.
Thanks, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Jill,
The guidelines for the 1200 mg (400 mg 3x day) are actually from Marnie. She does recommend Parkinson's dosages (which are considerably higher than the average dose).
There were a few threads not too long ago on CoQ10 where Marnie lists the dosages. Search "CoQ10 is too low" or just do a search on CoQ10 to read the most recent threads. Maybe even do a search on Parkinson's and read those recent posts.
I also found another researcher on another website recommending even higher doses for people with very serious illnesses like HIV.
Perhaps it would be good for you to experiment with the higher doses but just go very slow. I would like to know how it works out, if you do decide to do that. It is all interesting to me.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Some years ago my daughter had very good experience with Q10. Of the brand she was taking the recommended dosage as a supplement was 30 mg daily. On recommendation of her doctor /not exactly an LLMD but as close as it got at that time over here/ she took 90 mg daily. She did take it in combination with lots of other stuff, so it is difficult to say which pill did exactly what, but we think Q10 was important and worked. But when I read of 1200 mg daily I do get wondering... Sofia
Posts: 253 | From Sofia, Bulgaria | Registered: May 2001
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posted
I am pretty sure I have mentioned this before, but the neurologist who started hubby on CoQ10 did warn him that higher doses would cause a detox type reaction and specifically mentioned headaches.
Hubby did have a headache -- think he started at 200mg and went to 400mg 2nd or 3rd week -- it's been over 5 years so I can't remember the details exactly. As far as I remember the headache was his only side-effect and it went away within 1 or 2 weeks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I cannot tolerate coq10, and get a wildly racing brain that will not stop (this was my first Lyme syx ten or more years ago) screaming with white noise.
It makes every nerve in my body go a thousand miles an hour. And it takes me weeks to get over it. Each time I have tried it has been the same thing, and it never improved by "toughing it out" -- it only got worse.
I have not tried it in many years now, but that was my experience.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
hmmmm... it sounds like the guidelines are a little high, maybe.
Bea -- I think I recall your saying something about headaches and going slow. But, I thought I WAS going slow, given the amount that was advised. I forgot to mention that my daughter also complained of heavy fatigue. It sounded like that same 'lead-like' feeling that I used to get, which also alarmed. So I guess I just was not prepared for so many symptoms. Had only heard about the headaches and only once. No one else seemed to mention anything in that fairly long thread about possible or reactions.
Anyway... we will just lower the dosage and proceed with even more caution.
Thanks for all the replies.
Posts: 1111 | From Colorado | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
nomoremuscles --
Sounds like a terrible experience. That is the first I have heard, other than the headaches Bea mentioned.
Thanks,
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Claire, when I take 30 mg. of CoQ10 a day, I can feel a difference, even with that small a dose. And the effects seem to be cumulataive so that after 3 or 4 days, I am thinking clearer, more alert somehow.
It could be that you will need to balance giving enough CoQ10 to your daughter to produce POSITIVE effects, but not so much as to tip the scales to the detox/ healing crisis side of things.
I guess the rule of thumb with anything is to work up VERY slowly. I sure learned my lesson on that with the Cumanda.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Tracy -- Had no idea it was so potent. I chose it because of it's near lack of reaction (per various posts). Thought it would not interrupt my daughter's school schedule.
There are few LD remedies/medicines that do not have some consequences.
It is nice that you are doing well on such a low dose. Much more affordable that way. Perhaps we can get good results too with a lower dose.
Marnie agreed that slow is best.
Thanks for posting.
Posts: 1111 | From Colorado | Registered: Oct 2006
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Did your daughter take a good form of Vitamin E along with the CoQ10?
How do you feel when you do aerobic/any other exercise?
We MAKE CoQ10 when we exercise, IF we have the nutrients to make it, according to what I have read.
The AMOUNT of CoQ10 we make or need (RDA)of this ENZYME is unknown...according to the vast majority of websites I have read.
When and IF Bb is destroyed, it is LIKELY that Mn and possibly Zn are released in TOXIC levels. Not to mention Hg (which is bound to choline).
(With these minerals -alkaline - high...the body would likely need to counter with something acidic.)
So...taking SOD, a antioxidant enzyme to lock onto "excess" Mn (as MnSOD) might be wise. Solaray makes a supplement that contains all 3 major antioxidant enxymes. It is called SOD, but all 3 are in the formula.
Zn binds to vitamin C...this is the combo. in "zinc lozenges". Since vitamin C is "water soluable", smaller doses more often (like kids chewables) maybe helpful.
Now...Hg...
NORMALLY our bile salts bind Hg and carry it out of the system. While Bb does INDEED want choline, we MUST have enough of this too, in order to prevent Hg from "recirculating" it APPEARS. Hg binds to choline. Documented.
So...PERSONALLY, I'd take lecithin...increasing phosphorus and choline. With CoQ10 , vitamin E. Adding SOD and vitamin C and lecithin to counter any toxic levels of the minerals which maybe released.
I have REPEATEDLY said...small doses more often of many of the nutrients looks to be much more beneficial.
This reaction is somewhat unexpected because a LONG TIME AGO, on this board, we were discussing CoQ10 and someone took an ENTIRE BOTTLE of it without a severe reaction. NOT RECOMMENDED.
While Bb does NOT have "endotoxins" itself (technically discussed heatedly here), OTHER pathogens do...so is a co-infection present?
People HERE have reported "herx" responses to abx., to hyperbaric, to Rife, etc. but NOT to
Ozone saunas. Odd.
Trivalent ozone (O3) is really powerful. Do NOT BREATHE OZONE! Does it literally "disintegrate" Bb to nothingness...including "dissolving" any Mn and Zn???
Years ago, in the Merck manual, there was a "Universal Remedy". It was Mg oxide, tannic acid (a VERY stong acid) and activated charcoal.
It LOOKS like the first 2 destroy pathogens and the latter absorbs any "toxins" released...OR does it "downregulate" TNF alpha and Il B ...interleukin beta?
"Conclusion. The combination of a large-pore haemofilter and *charcoal cartridge* removed several cytokines efficiently under ex vivo conditions. This technique can now be tested for cytokine removal in vivo."
Now...I'm here to tell you that activated charcoal turns your BMs black and might cause constipation. (I experiment with whatever I report here.)
As to migraines...either vasoconstriction OR vasodilation are triggers, but...it is curious that in "healthy" people...CoQ10 is recommended to fight migraines..."Google" the words: "CoQ10 migraines"...
Statin therapy...INactivating HMG CoA reductase has led to constipation.
Humm...
Mg normally causes diarrhea...as we all know - too well. AND Mg also works to INactivate HMG CoA reductase...to stop VLDL cholesterol release from the liver.
If we stop cholesterol release (cholesterol is proteins and fats...i.e. acidic), does this increase the need for other acids...such as vitamin E?
So why would CoQ10 (&with either soybean or rice bran oil* in the formulas) cause the constipation? Theoretically it is "electromagnetically" balanced...raising the pH...but the mitochondria NEED an acidic environment...hence the need for vitamin E at the same time?
Note that the Parkinson's patients were given Vitamin E WITH CoQ10!!!
It is important to get the "good" kind of vitamin E which I linked a few days ago.
"CoQ10 is fat soluble; the oil-based soft gel is better absorbed than dry tablets or capsules. Because it can "auto-oxidize" -- become a free radical itself -- it's also best taken with 30 IU vitamin E. It appears that CoQ10 and vitamin E work synergistically (better together than separately). Some products contain both CoQ10 and vitamin E in the same pill."
CoQ10 supposedly increases Vitamin E levels. But what IF vitamin E is already deficient? Does CoQ10 then act as a free radical, destroying Bb, releasing toxic levels of minerals?
(Side note here...the space shuttle lift off was amazing to see a few minutes ago. We can see it at night (esp.) a few minutes after the east coast actual liftoff. I live on the west side of Florida...we have to look to the eastern sky. It appears as a bright orange streak in the sky. Tonight it was a little cloudy, so we didn't see the boosters separate as we have when there were other night take-offs. I pray for the astronauts all the time as I watch them climb...
It is awesome! Gosh, the bravery of those persons!)
Okay...it looks to be important to take vitamin E at the same time as CoQ10...bottom line.
Which IS the combo. given to Parkinson's patients.
It looks like in some body cells, TNF alpha triggers calcium influx (which might account for the constipation...ever eat a lot of cheese?)
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Could be a reaction to the other ingredients/fillers.
Posts: 925 | From California | Registered: Sep 2004
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
My daughter is doing fine now. All symptoms have subsided.
She does not eat dairy, wheat and little sugar and carbs. How is this possible for a teen? The motivation is her desire to keep acne down (thank vanity for some things). Also she feels mentally better and peer interactions are better.
I don't think she is reacting to the fillers in the CoQ10. She takes a lot of supplements and has never had a problem. We chose the one with the fillers suggested also.
She does take Vitamin E consistently (400 mg).
If CoQ10 instigates a Bb die-off, too much too soon may cause constipation. Not sure, but that is my thought. If CoQ10 does not cause die-off, then not sure how to account for it. She is not usually constipated. We thought Parkinson's doses were suggested. Several people were taking as much as 600 mg (?).
My main goal is to let people know that there can be reactions to CoQ10, as this was not listed by many who posted on the earlier thread except for Bea's comments. Also, it proved to be another example for the need to go slow, an important (and recurrent) theme.
Still believe in this supplement and the logic behind it given in the previous thread (CoQ10 is low).
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
We make less CoQ10 as we age (because we get sedentary???).
People who have Parkinsons are USUALLY older and have had whatever "trigger" for a LONG time.
It would appear there must be a LOT of damage already done (dopamine receptors kapoot or level of dopamine too low?) and PERHAPS THEN there is a need to really elevate the doses of CoQ10 to help the remaining mitochondria (powerhouses) of the cells?
Currently doctors are implanting devices to give a "charge" to the brains of Parkinson's patients too. Apparently it is effective to a degree for awhile at least.
Will we go back to electic shock therapy as a treatment for infections that have crossed the BBB?
It sure takes a LOT of the statins/arbs to work.
Why? The pathogen "load"?
If orals don't work, we go onto IV Rocephin...higher doses directly into the blood stream.
I am happy your daughter is feeling better and happy to hear that she is taking antioxidants.
These look to be very, very important. All of them as well as the antioxidant enzymes.
There is research going on re: the use of antioxidants for other diseases as well...Rocky Mt. Spotted Fever, etc.
It appears the goal is to reduce the damage to the powerhouses (mitochondria) of our cells and try to prevent DNA damage due to "oxidative stress".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Super-Absorbable CoQ10� with d-Limonene 200 mg, 100 softgels
Item Catalog Number: 951
Life Extension's new Super Absorbable CoQ10� with d-Limonene is a super-emulsified formulation that significantly increases the amount of CoQ10 absorbed.
D-limonene is a natural compound in orange oil that disperses and breaks down the CoQ10 particles, which reduces their size and makes CoQ10 more absorbable by the body.
Unlike other supplements that contain micronized CoQ10 particles, Super Absorbable CoQ10 with d-Limonene contains smaller, nano-sized CoQ10 particles that enhance this absorption.
Research shows that people taking this formula have higher blood levels of CoQ10 than those taking other formulas.
The patent-pending emulsifying system breaks down the fat-soluble CoQ10 particles into millons of microscopic droplets, allowing the body to absorb the CoQ10 much more effectively.
Life Extension uses only naturally extracted, cold-pressed orange oil to yield d-limonene, which has been shown in clinical studies to promote healthy cell division.*
The mitochondria are the cell's energy powerhouses, and coenzyme Q10 is an essential component of healthy mitochondrial function.2*
CoQ10 is required to convert fats and sugars into cellular energy, yet the natural production of CoQ10 declines precipitously with advancing age.3
When the body has an ample amount of CoQ10 the mitochondria can work most efficiently throughout the entire body, in cells everywhere, including the most densely populated area, the heart.4
When coenzyme Q10 is orally ingested, only a certain percentage is actually absorbed into the bloodstream. Findings in human subjects indicate that higher doses of CoQ10 provide significantly better effects than the doses that supplement users typically take.
Since CoQ10 is such an expensive nutrient, an alternative to taking higher doses is to increase the amount of CoQ10 that is absorbed.
Life Extension is pleased to announce the availability of an emulsified formulation that significantly increases the amount of CoQ10 absorbed into the bloodstream compared to previous versions.
By delivering so much more CoQ10 into the blood, Super-Absorbable CoQ10� with d-Limonene drastically reduces the cost per milligram for consumers. By taking just one 200 milligram capsule per day of this formulation, people obtain the benefit of taking higher amounts of regular CoQ10 supplements.
By taking just two of these 200 milligram capsules per day, one would obtain CoQ10 blood levels equivalent to ingesting about 697 milligrams of conventional CoQ10 supplements.
References Based on an increasing volume of published scientific findings, it appears that higher intake of CoQ10 is desirable.20-27 The good news is that the patent-pending emulsification technology used in Super-Absorbable CoQ10� with d-Limonene has been shown to significantly increase blood levels of coenzyme Q10 compared to previous versions.
LEF STUDY This means that taking 200 mg of this emulsified CoQ10 supplement provides the body with what used to take a lot more coenzyme Q10 to achieve. For those seeking the benefits of higher doses, this product provides ultimate absorption for no more money than the previous CoQ10 version.
Without adequate coenzyme Q10, the ability of cells to utilize energy substrates declines precipitously. The end result is the development of multiple disorders characteristic of normal aging.
Coenzyme Q10 is incorporated into the mitochondria of cells throughout the body where it facilitates and regulates the transformation of fats and sugars into energy. A large body of scientific evidence shows that CoQ10's ability to restore mitochondrial function has a profound effect on one's overall health.28*
As people age, their natural synthesis of CoQ10 slowly declines. When people take ``statin'' cholesterol lowering drugs, CoQ10 synthesis can be reduced even further.29,30
With the availability of this highly absorbable coenzyme Q10, it becomes much more affordable to supplement with greater doses. For those seeking the higher doses now being recommended by more scientists, one of the new emulsified 200 mg capsules would provide an efficient and economic method of increasing blood levels of coenzyme Q10.
This product contains NO milk, egg, fish, peanuts, crustacean shellfish (lobster, crab, shrimp), tree nuts, wheat, yeast, gluten, corn, or rice. Contains NO sugar, and no artificial sweeteners, flavors, colors, or preservatives.
Dosage and Use For those over 30, take one softgel daily after a meal, or as recommended by a healthcare practitioner.
Do not exceed ten softgels daily.
For the most efficient absorption, take softgel(s) with water after a meal.
Because this product is best utilized in a warm internal environment, do not take with cold foods or liquids. ************************************************* I am NOT endorsing this. Just curious to hear Marnie's opinion.
Also, Marnie, what is the "good" Vitamin E?
Thank you!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Apparently natural vitamin E is better than "synthetic" i.e., man-made.
That comes as no surprise!
This site is one of many that tell what to look for:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/