CoQ10 and MS my Neuro Dr. states it bad for MS

[Sequoia]

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.

Dr. Weil's position on marijuana is no different from that of many other doctors who support its medicinal use. The article you reference is a measured, informative presentation in a major online newspaper.

As for mushrooms, Dr. Weil recommends medicinal varieties such as Reishi and Maitake for improving immune function. There is abundant research to support this recommendation, although most of it comes from China where mushrooms have been a staple in the pharmacopeia for centuries. He does not advocate the use of hallucinogenic varieties. There's a big difference.

[dm123]

Google Psilocybin mushrooms, also know as “boomers or magic mushrooms. Also Google Dr Weil,+Psilocybin mushrooms. I’m sure he has experimented with all kinds of stuff that is not standard and acceptable medical practice. This one just caught my eye as being outside the realm, way outside, of standard medical practice.

This was during his period of work on altered states of consciousness in the 1970’s where he was a user and in the past few years as some sort of study in altered consciousness with others as users.

A major, online newspaper is not a scientific journal that I’d want to hang my hat on. Newspapers of all kinds sell stories, sometimes glamorized or exaggerated for effect. Look for verifiable data that can be reproduced or backed up by others.

Some advocate the use of medical marijuana, or the active THC part for nausea, maybe pain control in people at the end of their productive life. I really suspect the motives of cash strapped states like California where a delivery system and uncontrollable dose (no one knows how much med is in a puff or toke) as legally allowed and smoked. What about cancer risk to lungs? Who knows?

[Sequoia]

Google Psilocybin mushrooms, also know as “boomers or magic mushrooms. Also Google Dr Weil,+Psilocybin mushrooms. I’m sure he has experimented with all kinds of stuff that is not standard and acceptable medical practice. This one just caught my eye as being outside the realm, way outside, of standard medical practice.

This was during his period of work on altered states of consciousness in the 1970’s where he was a user and in the past few years as some sort of study in altered consciousness with others as users.

You can't know that he has "experimented with all kinds of stuff that is not standard and acceptable medical practice." That statement is pure speculation on your part, unless you can supply proof.

Work done on altered states of consciousness can't automatically be dismissed because one doesn't like the subject matter. It's a legitimate area of scientific interest and experiments were performed, and continue to be, by many researchers.

A major, online newspaper is not a scientific journal that I’d want to hang my hat on. Newspapers of all kinds sell stories, sometimes glamorized or exaggerated for effect. Look for verifiable data that can be reproduced or backed up by others.

The article you cited was not written for publication in a scientific journal. It was intended for popular consumption. Many doctors/researchers write for both scientific and popular publications.

Some advocate the use of medical marijuana, or the active THC part for nausea, maybe pain control in people at the end of their productive life. I really suspect the motives of cash strapped states like California where a delivery system and uncontrollable dose (no one knows how much med is in a puff or toke) as legally allowed and smoked. What about cancer risk to lungs? Who knows?

Medical marijuana is also quite effective for spasticity, as many MSers who live in states where it's legal can attest. It's used for that purpose, and for pain control, by MSers who are far from being at the end of their productive lives...in fact, it helps them to stay productive in many cases.

You may not approve of medical marijuana, but that doesn't mean those who do, including physicians (Dr. Weil among them), legislators and patient advocates, are doing something shady.

We seem to disagree on a number of points, but that's okay. Reasonable discussion is what it's all about.

[Sequoia]

Here's a little more information on Dr. Weil and Psilocybin mushrooms. In 2006, Dr. Weil wrote about a research study (in which he did not take part) at Johns Hopkins into the effects of ingesting Psilocybin under controlled circumstances. Further studies by the same group of researchers (of which Dr. Weil is not a part) were being planned at that time on possible uses for Psilocybin, including treating drug dependence.

http://www.drweil.com/drw/u/id/QAA400055

Attempting to discredit Dr. Weil's work in human nutrition by implying that he has an ongoing involvement with recreational drugs running from the '70s to the present day is uncalled for, IMHO.

[dm123]

Sorry, I disagree. I made no such implications about him using drugs currently. Did you miss the part in your link where it was reported that 60% of those that participated "met as full mystic experience" and 1/3 experienced anxiety?

My opinion is let others form there own opinion, doing there own research to the best of their ability. If someone truly believes such treatments as craniosacral therapy and mushrooms work, then give it a try.

It is not just me, others 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.

I'll let it go at that. No more post by me on this topic.

[justacowgirl]

Google Psilocybin mushrooms, also know as “boomers or magic mushrooms. Also Google Dr Weil,+Psilocybin mushrooms. I’m sure he has experimented with all kinds of stuff that is not standard and acceptable medical practice. This one just caught my eye as being outside the realm, way outside, of standard medical practice.

This was during his period of work on altered states of consciousness in the 1970’s where he was a user and in the past few years as some sort of study in altered consciousness with others as users.

A major, online newspaper is not a scientific journal that I’d want to hang my hat on. Newspapers of all kinds sell stories, sometimes glamorized or exaggerated for effect. Look for verifiable data that can be reproduced or backed up by others.

Some advocate the use of medical marijuana, or the active THC part for nausea, maybe pain control in people at the end of their productive life. I really suspect the motives of cash strapped states like California where a delivery system and uncontrollable dose (no one knows how much med is in a puff or toke) as legally allowed and smoked. What about cancer risk to lungs? Who knows?

The original question was about CoQ10...maybe we could revert back to that.

I take it

j

[Sequoia]

The original question was about CoQ10...maybe we could revert back to that.

Excellent idea!

[nutritiontara]

immune-stimulating products changed to immune-supporting products

I'll change the title. It is my opinion that immune-supporting products have little if any negative affect on auto-immune disease. And may even provide a way for the immune system to reorganize itself and reduce its attack.

[Sequoia]

I'll change the title. It is my opinion that immune-supporting products have little if any negative affect on auto-immune disease. And may even provide a way for the immune system to reorganize itself and reduce its attack.

I agree, Tara. Many people (including physicians) don't seem to be aware of the difference between supplements which support the immune system (also called adaptogens) and supplements which stimulate the immune system.

[gtwngal]

Very Helpful to me

Hello,
I used to have more ms activity going on. I don't have hardly anything anymore. When I do have something that I can feel, I increase my CoQ10. Usually any slight activity follows a period when I have been quite negligent about taking CoQ10 as well as my other supplements. I can actually feel the improvement with the CoQ10 supplementation. I just buy over the counter products sometimes with L-Carnitine and sometimes without. The one I currently have has 100mg and it is with the L-Carnitine. When I've had a little ms that I can feel, I've taken 3 or 4 a day. It calms right down. I am no longer on any medication, but at one point I benefited from Copaxone. My viewpoint is that if you need medication, go to the doctor for that, but work on improving your health yourself. If you listen to the MS Society and others you would steer away from Vitamin D and everything else (except possibly fish oil.)

Coenzyme Q10 is the only supplement that I can feel working. Very important.

[jumpinjiminy]

I was under the impression that any antioxidant helped protect cells from free radical damage caused by the immune system. So on the one hand, aren't they all beneficial that way when they can protect your cells from getting damaged in the first place? Also, they help your body repair any damage that occurs. So in a sense, they serve a dual purpose, one preventing and the other repairing.

On the other hand is the immune system enhancement which may or may not be harmful depending on what exactly is getting enhanced. Do they cause the body to ramp up the current out of whack pattern? Or do they cause the body to shift back to a healthier immune state? I haven't spent a lot of time digging for info on supplements and how they affect the immune system with the exception of maybe one or two, so can only ask questions in that regard rather than make any comments.

I guess it would boil down to the matter of how much of which is enhanced more for better or worse. One also has to consider the relative potency in terms of it's overall affect on various systems.

I'm in agreement with building up the body's resources first. And we're all different in terms of what we need to get there. For me, it's vitamin D and calcium. Those are the two biggest, longest running dietary deficiencies I have. I'm sure there are others, so I've added a multivitamin as well. And because of the hypothyroid, now it's iodine.

In the short run, things didn't seem to improve at all with supplements. But it takes time for a body to restore a long-term deficiency and it's not going to happen overnight. Over the long term, I can tell a big difference between flare ups in comparison to last year or the year before. So between the supplements, thyroid meds, eating more often and healthier choices, green tea, focusing on staying well hydrated, and mind-body relaxation techniques, something is definitely working for the better.

I can tell a huge difference when the flare ups settle down. Plus, the flare ups aren't lasting as long either. And when they go away, there don't seem to be as many residuals hanging on forever. The symptoms clear up sooner once it's over.

This is my gauge. How much better do I function when not having an active flare up? Tons. In that case, I'll keep up with what I'm doing differently. In a few months, I'll try the CoQ10 again. Then after that, I'll try the ALA/ALCAR again.

My mistake was trying all three along with vitamin D and a multi-vitamin at the same time. I ended up having a big flare up within a week of started them all, suffered chronic fatigue the next two months, then headed straight into another flare up. It made me afraid to take any supplement for fear of causing one. So now, I plan take it more slowly when adding something new to see how it goes.

But if your body needs it to create energy, and I have or have had habits that deplete a particular nutrient (former smoker?), I'm all for trying a supplement.

Energy, focus and the ability to concentrate and function mentally is what I want most during and between flare ups. I'll try anything that might help me keep those functions. Fog brain and fatigue are my first signs of an impending episode. If there was some way to have a flare up without those two companions, I'm down with it. Give it to me. Lol.

Now I need to put CoQ10 on my list of things to research and try again. So much to learn, so little time.

Good grief! I'm a long-winded girl tonight. Sorry for the novel, folks.

[Toomnyhats]

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.”

The only person I have ever heard say this is Tara, a nutritional biochemist who has a private practice helping clients with their health issues. She is legally allowed to "have patients".

The rest of us share our personal experience & word it appropriately.

This IS Tara's forum (Tara's Nutrition and Suppplement Notebook) - go to her profile for a link to her website where she explains her credentials.

[futurmil2b]

Supplements - A bit Confused????

WOW.. something else to confuse me. I thought supplements would be a good thing for MS and for the body as a whole.. so some supplements are bad for MS??

I guess the best way to get our nutrients is from food.. but we will need to eat a heck of lot of fruits and veggies..

Here is what I take:

Women's organic natural multi-vitamin

Essential Women's Oil (flaxseed oil, rosemary, evening primrose)

Zyflamend - occasionally to help inflammation

Vitamin d-3 - gel caps

alpha lipoic acid (50mg) - occasionally

Ativan 1/2 .5 mg - almost daily - to help with muscle tension to help me relax during the day.

I also have a small amount of red wine maybe 3x a week.. but I know that is a stimulator which I may have to give up :-(

[futurmil2b]

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

hmmmmmm, therefore people with ms should avoid multi-vitamins that contain A C and E?? Also, I guess we should avoid wine/alcohol - isn't that an immune stimulant?? I like this board but each time I come here I get a little depressed and more and more confused.

When I think I am on the right track, this board somehow reminds me I am not.. but again, I do like this site and I have to realize everyone has their opinion.

A lot of the information on this board is very helpful but with some of the post - people with ms cannot eat, cannot drink, cannot take vitamins, I guess we can eat fruits, veggies and nuts.. that's about it.

Some of the information is very conflicting. I guess we have to realize what works for us. As it is stated, doctors do not know a lot about MS and in my opinion how can you determine the best form of treatment, how can statements be made about what to eat, what not to eat, etc.

I am sure there have been people that have had ms for a very long time and are eating and drinking whatever they want and are doing fine.

Again a lot of the information on this site is very helpful but some, very conflicting and confusing.

Ms. Jay

[futurmil2b]

I'll change the title. It is my opinion that immune-supporting products have little if any negative affect on auto-immune disease. And may even provide a way for the immune system to reorganize itself and reduce its attack.

THANK YOU THANK YOU I agree 101%..... This makes me feel I am on the right track.. Glad to see this post.

Ms. jay