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Tara's Nutrition & Supplement Notebook Discuss healthy eating and natural/herbal supplements with Professional Nutritionist Tara Palmer.

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  #1  
Old 01-30-2011, 12:37 PM
Akispusa Akispusa is offline
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CoQ10 and MS my Neuro Dr. states it bad for MS

I mentioned to my neuro that I started to take CoQ10. He told me to stop it right away since it stimulates my immune system. With my MS everyone knows that are immune system is stimulated as is. Has anyone had any experience with CoQ10?
I just purchased Qunol Liquid CoQ10 it states its pharmaceutical grade. Any thoughts on this? Or is the regular COq10 ok to take.
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  #2  
Old 01-30-2011, 03:33 PM
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Sequoia Sequoia is offline
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I would never advise someone to go against the recommendations of her neurologist, but I can tell you that several people on this forum are taking Coenzyme Q10 or Ubiquinol (a more bioactive form).

Also, Andrew Weil, M.D., a widely-respected physician who specializes in nutrition & supplements, specifically recommends Coenzyme Q10 for MS.

Some doctors want their MS patients to avoid [B]all[/B] supplements which support the immune system, but some take a more selective approach by considering the potential benefits of taking a particular supplement, as well as the potential risks.

The label "pharmaceutical grade" only means a supplement is manufactured with high standards of purity and confirmed potency, and may or may not be true since there's no legal standard that applies. In other words, the manufacturer may or may not be telling the truth.
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Old 01-30-2011, 08:14 PM
nutritiontara nutritiontara is offline
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Thank goodness CoQ10 is an immunestimulant.
Does that equate to "confusing" how the immune system attacks myelin?
When you read the literatue, CoQ10 is a powerful immune stimulant, helping the immune system ward off (mostly) cancers. (CoQ10 is a breast cancer "game" changer).
The most immediate action CoQ10 has is being involved in the cascade of blood quagulation; 'vitamin Q'
CoQ10 supports the energy production of cells in energy demanding areas such as the brain, muscle and heart.
I use CoQ10 for patients with "heart predespositions", low cell energy....(spleen injuries, COPD, chronic weakness) and it truly is a great anti-oxidant.
Statins: reduce CoQ10 levels...the precise nutrient protective for the heart! oxymoron?
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  #4  
Old 01-30-2011, 09:09 PM
dm123 dm123 is offline
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Quote:
Originally Posted by Sequoia View Post
I would never advise someone to go against the recommendations of her neurologist, but I can tell you that several people on this forum are taking Coenzyme Q10 or Ubiquinol (a more bioactive form).

Also, Andrew Weil, M.D., a widely-respected physician who specializes in nutrition & supplements, specifically recommends Coenzyme Q10 for MS.

Some doctors want their MS patients to avoid all supplements which support the immune system, but some take a more selective approach by considering the potential benefits of taking a particular supplement, as well as the potential risks.

The label "pharmaceutical grade" only means a supplement is manufactured with high standards of purity and confirmed potency, and may or may not be true since there's no legal standard that applies. In other words, the manufacturer may or may not be telling the truth.
This has always bothered me about vitamins and supplements. This is an area where some Obamacare money needs to go as some of the supplements can be dangerous if mixed with other meds.

Quality control also is at risk.
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  #5  
Old 01-30-2011, 09:23 PM
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Originally Posted by nutritiontara View Post
Thank goodness CoQ10 is an immunestimulant.
Does that equate to "confusing" how the immune system attacks myelin?
When you read the literatue, CoQ10 is a powerful immune stimulant, helping the immune system ward off (mostly) cancers. (CoQ10 is a breast cancer "game" changer).
The most immediate action CoQ10 has is being involved in the cascade of blood quagulation; 'vitamin Q'
CoQ10 supports the energy production of cells in energy demanding areas such as the brain, muscle and heart.
I use CoQ10 for patients with "heart predespositions", low cell energy....(spleen injuries, COPD, chronic weakness) and it truly is a great anti-oxidant.
Statins: reduce CoQ10 levels...the precise nutrient protective for the heart! oxymoron?
I'm trying to interpret your answer to the question, Tara.

You mention that CoQ10 is a great anti-oxidant, and that you use it for patients with "heart predespoistions". However, you don't directly answer your own question regarding whether CoQ10 confuses the way myelin attacks myelin, and you don't directly address Akispusa's question about whether it is bad for MS.

I suspect that you are saying CoQ10 is a good thing, even for people with MS, but, it's difficult for me to be sure.

What is your advice regarding whether someone with MS take CoQ10 (or other immune-stimulating products)?

~ Faith
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Symptoms in JAN02
Dx in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable" stroke and "probable" CNS dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
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- Began receiving SSDI / LTD NOV08.
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  #6  
Old 01-30-2011, 09:34 PM
Akispusa Akispusa is offline
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Question

Tara Im still confused with your answer. Is it recommended for MS patients? I also take tricor and crestor.
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  #7  
Old 01-31-2011, 12:31 PM
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rawksea76 rawksea76 is offline
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Now I am totally confused. I don't take CoQ10, But want to know what other supplements etc. are immune system stimulators?
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  #8  
Old 01-31-2011, 01:05 PM
Tawanda Tawanda is offline
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The M.S. Community has never come to a complete agreement on these sorts of drugs, or even Vitamin C supplements, for all that matters! My doctor has recommended Vitamin B-12 injections, Vitamin D and Cold Liver Oil supplements. I'm suprised he even recommends these things as in the beginning he was strictly a pharmacutical man!
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  #9  
Old 01-31-2011, 01:38 PM
chrisinpa chrisinpa is offline
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heresy!!!

in my experience, many doctors have no clue about nutrition or supplementation. integrative medicine MDs are exception.

your body needs coq10. they don't even know what causes MS ('it is believed...'). i love the clobber the immune system approach embodied by chemo and tysabri. golly, doesn't my immune system protect me from viruses, tumors, CANCER? why would i want weaken it.

sorry for the rank but western medicine is failing us.

take coq10 for a while. if you feel better, keep taking it.

just for laughs, ask your neuro about vitaminD.
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  #10  
Old 01-31-2011, 02:12 PM
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I asked my neurologist, once, a similar question about immune stimulating supplements. He referred my to NMSS, and asked that I let him know what they said.

I called them, and the person I talked to was real helpful. Much of what she quoted was from Dr. Allen C. Bowling's (a neurologist) book: Alternative Medicine and Multiple Sclerosis.

I couldn't initially find anything about CoQ10 in his book. I needed to look under CoenzymeQ10.

He says that no large published studies have evaluated its use in patients with MS. He also says that, like anti-osidant vitamins, it may have beneficial effects on MS, but, it also stimulates two types of immune cells and may have an adverse effect on MS. He is also not sure that non-vitamin supplements offer any increased benefit over less expensive anti-oxidants. He actually mentions, in more than one place, that, although anti-osidants are promoted to improve MS, that they may also be harmful because of their ability to stimulate the immune system.

What I've personally put into practice is that I don't multi-dose on anti-oxidant supplements, and, I avoid some anti-oxidant supplements altogether. However, I don't skimp on fruits and vegetables, as I am less concerned about natural sources of anti-oxidants. I purchase regular or herbal tea rather than green tea, as his book considers high doses of green tea a "theoretical risk" for those with MS.


Rawksea -- I think any anti-oxidant is immune stimulating. I think that's why they are often recommended for health. This would include vitamins A, C and E, and echinacea and green tea, to name a few.

~ Faith
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Faith
MSWorld Volunteer -- Moderator since JUN2012

Symptoms in JAN02
Dx in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable" stroke and "probable" CNS dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
.

- Betaseron NOV03-AUG08; Copaxone SEPT08-present
- Began receiving SSDI / LTD NOV08.
No longer employed. I volunteer in a variety of capacities in my church and community.
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  #11  
Old 01-31-2011, 02:51 PM
dm123 dm123 is offline
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Quote:
Originally Posted by chrisinpa View Post
in my experience, many doctors have no clue about nutrition or supplementation. integrative medicine MDs are exception.

your body needs coq10. they don't even know what causes MS ('it is believed...'). i love the clobber the immune system approach embodied by chemo and tysabri. golly, doesn't my immune system protect me from viruses, tumors, CANCER? why would i want weaken it.

sorry for the rank but western medicine is failing us.

take coq10 for a while. if you feel better, keep taking it.

just for laughs, ask your neuro about vitaminD.
Sorry, but I disagree.

Unless a drug is backed up by verifiable repeatable scientific data, it is only hearsay. If you look at any study about medicine, there is always a certain amount of positive responders. It is called the placebo effect and is discounted as not factual. May times even a sugar pill can cause placebo effect.

Some vitamins, like Niacin, have been show to have some effect on cholesterol but it is hard to document how much. There is this thing called bio-availability (how much is actually available for our bodies to use).

There is little consistency in how OTC vitamins are manufactured. Just because it says 25 mg is in the pill doesn't mean 25 mg is available. The whole thing could be packed so tight that if eaten with food could go through like a kernel of corn.

Fat soluble vitamins A, D, E, K are dangerous if taken in pill form in excess. The excess water soluble ones are excreted in urine fairly rapidly. There is a big business on the east coast of Florida in docs giving B12 injections. Kind of like when people go to a doc with a viral cold and are not happen unless they walk out with a script for an antibiotic. People think they work, therefore they work.

In reality, the only ones who actually need B12 are the ones who have had stomach surgery or whose stomach doesn't excrete gastric intrinsic fact that allows absorption. A blood test can tell if you really need it.

Just because a person can hang up a shingle that says MD, DO or in my state DC and pushes unconventional therapy doesn't mean there is not some alternative motive. It is kind of a niche market, appealing to the all natural crowd. Most times the providers sell their products right in their office.
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  #12  
Old 01-31-2011, 03:34 PM
dm123 dm123 is offline
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Another point: I'm sure no one wants to be put into a position where they actually give medical advice on what to do. It might be construed as practicing medicine. Probably OK to tell what you do and let others draw their own conclusions.
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  #13  
Old 01-31-2011, 05:11 PM
dm123 dm123 is offline
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No doubt, everyone needs proper nutrition. It is the "claims" of what that specific nutrition does that might cross the line.

I can't over-emphasize how the FDA, the AMA and the State Board of Medical Examiners feels about practicing medicine without a license. To have direct links to a site that offers consults, whether free or not, the liability law is the same for both, risks jail time, maybe even this web site shut down. Be careful out here.

Some have criticized Dr. Weil for promoting unverified beliefs. Weil's rejection of some aspects of evidence-based medicine and promotion of alternative medicine practices that are not verifiable. Big buddies with Timothy Leary in the 60s and 70s. Promoted, and still does I think, psychedelic mushrooms.

A copious author does not an expert make.
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Old 01-31-2011, 06:20 PM
justacowgirl justacowgirl is offline
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Originally Posted by dm123 View Post
Sorry, but I disagree.

Unless a drug is backed up by verifiable repeatable scientific data, it is only hearsay. If you look at any study about medicine, there is always a certain amount of positive responders. It is called the placebo effect and is discounted as not factual. May times even a sugar pill can cause placebo effect.

Some vitamins, like Niacin, have been show to have some effect on cholesterol but it is hard to document how much. There is this thing called bio-availability (how much is actually available for our bodies to use).

There is little consistency in how OTC vitamins are manufactured. Just because it says 25 mg is in the pill doesn't mean 25 mg is available. The whole thing could be packed so tight that if eaten with food could go through like a kernel of corn.

Fat soluble vitamins A, D, E, K are dangerous if taken in pill form in excess. The excess water soluble ones are excreted in urine fairly rapidly. There is a big business on the east coast of Florida in docs giving B12 injections. Kind of like when people go to a doc with a viral cold and are not happen unless they walk out with a script for an antibiotic. People think they work, therefore they work.

In reality, the only ones who actually need B12 are the ones who have had stomach surgery or whose stomach doesn't excrete gastric intrinsic fact that allows absorption. A blood test can tell if you really need it.

Just because a person can hang up a shingle that says MD, DO or in my state DC and pushes unconventional therapy doesn't mean there is not some alternative motive. It is kind of a niche market, appealing to the all natural crowd. Most times the providers sell their products right in their office.
Sorry, but I disagree and have to agree with chrisinpa. She/he didn't say ALL doctors; she/he said in her/his experience "many doctors have no clue about nutrition or supplementation." I believe that to be a true statement.

Is it not ultimately up to the patient to be responsible for his/her own health?

I believe that people have to make their own decisions about their health care and therapies based on all information available. Many people have success with alternative therapies...and many people have no success with conventional therapy. Each person should be allowed and ecouraged to find the best way to manage their affliction.

This forum is unique in it's capacity to pass along information for people that have MS about what works for THEM...not necessarily what can be verified by scientific study.

Personally, I have benefitted from B12 injections in the past. I have no history of stomach surgery. Was it "placebo" Who cares. It helped me.

I do not believe that I would discredit nutrition as a therapy simply because my doctor does not or cannot provide me with a nutrional therapy.

I am not sure what your reference to psychadelic mushrooms has to do with someone attempting to find a reasonble way to manage their affliction. If you are using that to discredit someone I would want to be sure of my sources. Heresay, rumor, innuendo and gossip. It has nothing to do with MS.

Just my opinion.
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  #15  
Old 01-31-2011, 08:07 PM
dm123 dm123 is offline
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I'd be happy to back up what I said but can't post links. You can Google one article of his "Cannibus Rx: Cutting through the misinformation" by Dr Andrew Weil. The mushroom comment is true and not hearsay, rumor, innuendo and gossip. All you need to do is take the time to research it yourself. It takes a while, as he seems to be a prolific paper writer and internet searches are full of his stuff. Just verify what he says from an outside source that is all I ask.

At the time he graduated from med school, MDs only had to complete one year of internship. He never finished his Residency. He is basically a minimally trained General Practitioner.

I will give him points for experience in his chosen field. I would not go to him for a serious disease.

I would agree with you on the fact that many doctors don’t use nutritional supplementation to treat diseases. They may say something like “well you could try cranberry juice” to keep down UTI’s. But as I said before, unless the product is test by a government source and deemed safe, they are not going to give you an Rx to the local health food store.

If B12 helps you, go for it. It just has not been “proven”, to my knowledge to be effective as a pick-me-up. I’d love to be shown the error of my ways with a proper double-blind study.

Preferably, there would be “verifiable” studies backing up the claim for more naturalistic approaches. Believe it or not some of the old ways are accepted for certain medical conditions. Remember bleeding for vapors and such, (Pasteur put that to bed with his germ theory, thankfully) but some places do use leeches in certain surgeries.

I also agree every person should be an active participant in their health care. Learn all you can but verify your sources, especially when dealing with a serious disease on a limited budget.

Even regular docs can be wrong, in a hurry, make mistakes. I routinely ask why, if I question something. I had already prepared my side of the spinal tap routine because I had more than enough evidence of MS without it. Thankfully, I never had to use it.

The absolute worse thing a person can do is say “Well, you are the doctor, do what you need to”.

The lawsuit part is based more on posts I have seen in the past referring to such comments as “I have all my patients on xxx.”
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