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Posted: Tue Oct 16, 2007 12:55 pm Post subject: Combine your statin drug with CoQ10 into one capsule.
We have been combining CoQ10 with Lipitor and Crestor into a capsule for a number of years. We typically combine 100mg of CoQ10 with strengths of 5,10,20mg Lipitor and Crestor. Ideally, we would be able to combine the higher strengths, because as you know they need them the most, but the active ingredient wont fit into a swallowable capsule. I guess you could take it two to three times a day, but we have never done that. If you have a compounding pharmacy in your area, talk to them about putting your statin drug with CoQ10 into one capsule. In my experience, 9 out of 10 times the patients co-pay stays the same which is awesome, because as you know quality CoQ10 is VERY expensive. If you are taking a generic statin drug, it will probably cost you a little more, but I'm sure you can have a compounding pharmacy combine it for you. I hope this was helpful.
Compounding Pharmacy Technician
Ontario Pharmacy Inc.
Ontario OR 97914
Joined: 24 Oct 2006 Posts: 683 Location: Ongar, UK
Posted: Wed Oct 17, 2007 3:06 am Post subject:
What can also be added to compensate for the other deficiencies engendered by mevalonate pathway inhibition? I know of nothing, for example, that would reverse heme a shortage in the final, cytochrome c, stage of mitochondrial respiration apart from replacing the farnesyl depleted in service to cholesterol reduction.
HMG-CoA reductase inhibitors are a form of incapacitating agent ("drop-to-the-floor" variety in military terms) and as such must be considered toxins, albeit of a usually (but not always) slow-acting type.
They are NOT proven effective in their stated purpose, nor are they widely tolerated as claimed in the shibboleth that must be included in the introduction to every study submitted for publication as an unspoken condition of acceptance.
Please acquaint yourself with recent (and not so recent) research, which is being referenced at wwww(dot)talkingstatins(dot)com and currently being updated on a daily basis. Read the wealth of material put up by Dr Graveline on spacedoc main site.
Particularly make a point of obtaining a copy of Dr Malcolm Kendrick's "The Great Cholesterol Con" for a good background read.
Not much new to report from the clinic visit. Arms are a little weaker, legs are still good, breathing is excellent, but get this----my pinching grip, between thumb and index and middle finger is much better. Go figure! I got some new therapy exercises and an over the door pulley system to work on the range of motion of my arms.
I tried to explain the humming sensation in my arms. It feels like current going down my arms from shoulder to fingertips. They, of course, had no explanation. No mention of any other tests. Had to get a flu shot. Never have had one before.
All in all, it didn't go as badly as I had feared.
Hope you are feeling better. I have increased my DHEA to 25 mg per day. Keep me posted on the d-ribose. My list of supplements go on and on. How often should one take a break from the DHEA?
My hubby got me some Velvet Elk Antler capsules. We have a local dealer here who has an elk farm. Evidently it's traditional Chinese medicine. "The tissue contains the essential building blocks for a wide variety of cells----skin, hair, nerves, blood, cartilage, bone and tissue. Velvet is believed to work by stimulating our own immune systems and internal growth mechanisms, allowing the body to heal itself." I promised to try it for 90 days. I will keep you posted.
I guess we keep trying new things and perhaps we shall discover something that will really help. The advice given here has been so helpful. Perhaps, you and adec and brooks and xrn should write a book. It would most likely be a best seller.
DEB, good to hear, overall. I may have some thoughts and questions for you later on, right now I am overloaded with upcoming deadlines at work. That will last for at least two weeks. (Better too much work rather than too little, I guess...)
"I have increased my DHEA to 25 mg per day."
That's the amount I am doing now. A potential correction: I mentioned in another post to Brooks that hormones are replaced rather than supplemented. In the case of DHEA, that may not be the case. At least one website indicates that it is an exception and that the additional DHEA supplemented is cummulative with natural production. (While "natural production" may be less than optimal with age or/or physical condition.)
"How often should one take a break from the DHEA?"
While I still may do it, there may be no need to "take a break" from it based on the above. Who knows? If I learn differently over the months I will post on it. I have several unfinished books going right now that may comment on the subject. No time to read them right now.
Keep up the good work. I am interested to know how the exercises go. My shoulder and arm are not much improved and I sure would be interested in knowing how the situation will eventually resolve or not. What will it be like in five years? Hopefully just a vague memory.
Have you ever taken an Ambien? It tends to lessen some of the symptoms with my arms (and also lessens occasional annoying stong heartbeat sensations too, as may small amounts of Melatonin and possibly Tryptophan). They feel better somehow after 5 mg of Ambien. Less feeling of weakness. Let me know if you have ever had a prescription for it. A little research on it after noticing these effects a couple of times got me to study up on it a little. Ambien has some brain/nerve/neurotransmitter-type activity going on and is currently being studied in some areas of brain science these days. Just an idea to try or not sometime.
Generally my arms are not any better or worse over time, while otherwise I am anticipating a near full recovery -- while I do not rule out possible problems down the road such as what Dr. Graveline has recently run into. We'll see.
BTW, I should have mentioned that I quit taking as much DHEA as I had been for a while (100 mg) because I was losing hair very quickly in the "male pattern baldness" areas for the first time. I am sure it was due to the huge increase in DHT (Dehydrotestosterone from free testosterone conversion) from testosterone replacement. And DHEA is good for the same thing. So I cut it back. Did you get a chance to read the book I suggested? I recently read from a local urologist's website that DHEA is a promoter of Human Growth Hormone and Insulin-Like Growth Factor-1 as well as testosterone. (Estrogen conversion in men at least is usually minimal and can be prevented substantially with the supplements mentioned in the book -- which I used.) HGH AND IGF-1 are also substances that I have an interest in -- both strongly anabolic (i.e., "building hormones" --which is likely what we need to regenerate cells and tissues). A theory of mine is that they may be helpful for statin-caused ALS-like issues. I hope to get a chance to look into it better before too long.
On another issue more for me and other men: I have considered going off of testosterone and just supplementing with high doses of DHEA. I may try that in a few months. I have a hunch it will work fine.
I have done Botox over the last few years. Shots between the eyes. The last time, which was the first since my Zocor problems, I may have set off a bad period for my arms. Or it may have been a coincidence. One of the few contraindications for Botox is ALS. This leads me to believe that I have the same issues just not the progression of the disease. I have thought that for a long time about both of us. Before too long I will give it a go again and see if I get a "definitive reading" on it this time -- and whether it is a temporary or more permanent-type set back. Right now I cannot tell what it may have been but I will monitor it more scientifically next time.
I hope things are going well for you. How has your exercising done? Has it helped any?
Joined: 14 Sep 2006 Posts: 262 Location: New York City
Posted: Wed Nov 21, 2007 12:00 am Post subject:
I actually like how this thread has morphed. The real-world information posted here is so invaluable. It's also great how every thread is punctuated with a crisply relevant response.
Hey Biologist, I have some great information relating to this subject that might interest you. I just want to crystallize it better into a more coherent form. Anyway, I also wanted to wish you and everyone and their families a happy and healthy Thanksgiving.
I do believe I have some Ambien in the cabinet. I have never used it though. I take .5 mg of Ativan at night to sleep as it helps with my anxiety. I can try the Ambien though if you think it might help.
I would say that my arms/shoulders are weaker. I have reached the point where exercising them are not to my benefit. I have no problems with doing range of motion exercises, but any machine work or riding an Air-Dyne causes even more weakness and stiffness the next day. I am going to try just using the treadmill and bike with no arm work. I would like to keep my legs strong. They are not as strong as when I was running of course.
I have continued with the 25 mg. of DHEA. I have not read the book yet. I did some research on the DHEA as well and I will continue to see what happens. I seem to have a few good days and then a miserable one. Perhaps it's when I overdo it. Yesterday I could not get a jacket on by myself which scared me. I have ordered some Dribose to if that helps at all. I guess we are all trials and experiments.
Dr. Graveline's diagnosis has taken us all be surprise. I hope he will share some info with us also. I feel bad for him. I know how devastated I felt when given the diagnosis. It's odd...since I was diagnosed two years ago, two more people in our town that I know have also been given the ALS diagnosis. They have not taken statins but they are progressing more quickly. Our town isn't that big either. Scary!
As always, I appreciate your valuable info. Good luck with your experiments.
adec: Thanks for all of the info that you supply and I wish you a wonderful Thanksgiving also.
Joined: 13 Dec 2006 Posts: 1136 Location: Fort Worth, Texas
Posted: Wed Nov 21, 2007 7:08 pm Post subject:
all: since we are in the SATIN segment of the forum. I thought I would provide a personal update: I am still having some difficulties; not as predictable as they have been though and getting better each month it seems (fingers crossed). This allergy season has exacerbated some of the familiar problems: burning in the long muscles, joint pain, night sweats, headaches, sinus probs, but I am back at the gym, and that is a small miracle for me. Strength machines that would have put me in bed for a week a few months ago are having the desired effect on my body, and I am able to do a stationary bike for 10 minutes at level 3 without pain. (it used to be 30 minutes at level 11 - ($%#$^&!) ); so, it seems I can reform without damage at last. I hate to, as I've said before, publish without real proof, but my situation is looking favorable, and I continue to be optimistic for all of us.
Finally, for all my American countrymen (and women): Happy Thanksgiving! To all my GREAT British friends: too bad George was so short-sighted - we could all be celebrating together, and with better beer! My fondest wishes for everyone's continued improvement!
I do NOT believe the Ambien would help as a therapy, but for me, it may be slightly "diagnostic" in an odd way to know that it seems to temporarily (several hours) relieve some of the symptoms. The question being "What is the mechanism?" for the relief. I just finished reading the book "In Search of Memory: The Emergence of a New Science of Mind" by Nobel Prize winner Eric R. Kandel which is somewhat helpful in an "off label" way for understanding the biology of neural cells and cellular communication.
My left shoulder often feels weak just by the weight of my arm -- I'm sure you know want I am speaking of. Holding the phone to my left ear with my left arm gets tiring very quickly (less than 30 seconds). While I have not thought to try the "phone test" I can say that the weight of my hanging arm from my shoulder when standing does not bother me 15 to 20 minutes after taking half an Ambien (5 mg which is half of the dosage of my pills of 10 mg). I will no doubt experiment with 0.25 mg to see if there is the same effect with that low dosage before long, probably tonight. You might give it a try sometime just to see. I take it that you notice no temporary change with your Ativan? The two drugs have some similarities.
At this point I think the chances my situation getting worse in the future is about 50/50. The last few days have not been real encouraging. But I will keep you updated.
"I would say that my arms/shoulders are weaker. I have reached
the point where exercising them are not to my benefit. I have no
problems with doing range of motion exercises, but any machine
work or riding an Air-Dyne causes even more weakness and
stiffness the next day. I am going to try just using the treadmill
and bike with no arm work. I would like to keep my legs strong.
They are not as strong as when I was running of course."
Yep, I can identify with that -- the stiffness and soreness thing and the determination that the effort may be counterproductive. I may be good and sore tomorrow as I am thinking about giving it a slight test today for the first time in six months. May start (and finish) with the lightest weights though. I just got done with two miles on the elliptical machine and some good stretching. It occurred to me recently that I may have the skinniest arms anyone will have ever seen on someone with such "ripped abs" in a few years. That is, I think I may start working out other parts of my body without using my arms. I may use the leg machines too. My lifting over the last few years (before Nov. 6 2007) got me stronger (I could do 15 or so good dips at a time where I started at just 3 or 4) but I did not add so much as a quarter of an inch to my upper arm measurements. I now thank Zocor for that failure to grow. I think it was interfering with muscle growth and may easily have been responsible for my low testosterone levels (which might have been part of its "mechanism of action.") Athletics and gym work do not mix with metabolic poisons. One of the things that got my doctor's immediate attention (he literally straightened up in his chair) was when I mentioned to him in his office right after my "crisis" that I had been "training." He had recently read an article in one of his medical publications taking about statins and athletics, and then he started listening more carefully to me. He started getting the picture pretty quick at that point. And has been learning more -- but still has a hell of a lot more to learn. He will be getting this book delivered to his office soon directly from Amazon compliments of me. I am about to finish my own copy. He did read another book I got to him on a different subject last year and even passed it along to others. I did not have to just take his word that he read it either. I could tell. Here's the one he will be getting.
What a hoot! Someone happened to have given me a copy too (as I sure as hell would not have bought it myself). The author even mentions in the first chapter that he was previously found guilty of mail fraud. The admission was no doubt on the advice of his publicist or lawyer. Good move. He is a bullsh*t artist. Not everything he says is a lie, it's just that he does not care whether it's true or not. He was largely correct right about statins though. My doctor has a thing coming if he thinks that book is representative of current anti-statin publications! His Pharma-paid medical journals are in the same category as Trudeau's book!
I think you should stay in touch with Dr. Graveline a bit, both being diagnosed with the same thing from the same probable cause. One or both of you may actually have it. Same here. Public radio has a woman discussing her ALS yesterday. Interesting. Wonder if she was a statin user? If you hit on any good ideas for treatment, I hope you will post on them. There are some good legal and ethical and practical reasons that Dr. Graveline is not likely to post in this forum (or even admit that he reads it). I would get into some of the reasons I think that is true if this post were not already too long and due to get longer. But you can. And we can.
Brooks, good to hear about some progress. FYI, I can now feel a beer. Not so much as in the past, but it is returning. (I may experiment some more this evening!) Ambien can have a slight euphoric effect on many people (maybe all people) including me. That vanished until fairly recently. I had just quit using it at all and tried the natural route (tryptophan and melatonin) which work fine, but much more subtly. I plan to go back to them exclusively. Ambien is habit forming and does have residual effects. I learned from Wikipedia that it can be snorted as it is not "lipid soluable." Yep, that turns out to be correct. Maybe I will keep a few around for occasional light recreational use -- Ooops. Scratch that last line. My facial flushing is largely gone. I cut back on B6 and B12. I believe that was the likely cause. I will repeat "the experiment" maybe in the future to see for sure. A problem with some supplements is that they can be too high a dose for everyday use. Something to watch out for (but I'm not sure how). I plan to cut my acetyl-L-carnitine back to two grams per day (per Dr. McCleary -- see above hyperlink) from three or four grams per day.
Thanks, adec. Just be sure to include your sources for the info/discussion such as by linking to the given website(s).
Brian, I am most definitely losing weight with this guy's advice/knowledge:
Never hungry. Just eat very few carbs. Losing about a pound a week -- the way I like. Thanks for citing his website a while back. I read him nearly everyday. I am also reading his buddy's book (and just reordered D-Ribose too).
Surprisingly short. I will finish it today. BTW, Like Dr. Graveline, he is real big on Vinpocetine and has used it for years. (As well as the standard supplements mentioned on this forum such as CoQ10, carnitine and alpha lipoic acid, etc.)
Just reading over this post to add a missed concept I had meant to mention in the original post and found the following error that could confuse new people not familiar with my situation. I wrote in the above post:
"My lifting over the last few years (before Nov. 6 2007) got me stronger..."
That should have read "Nov. 6 2006" not 2007. It was a little over a year ago that I ran into acute statin problems from the combination of increased statin dosage (27 mg for 5-6 years to 40 mg for a month or longer), stopping taking CoQ10 (ran out of it, but had no idea that it was essential when taking statins), much aerobic exercise in the preceding weeks, and taking doxycycline at the time after recent Lasiks surgery for eye sight correction (another potentially serious NO NO that is not/rarely discussed -- statins and antibiotics DO NOT mix; they both screw up mitochondria in the cells by different means. Just more Phama criminal negligence, BTW).
Here is what I came back to add to the post:
The fact that Ambien temporarily improves my symptoms implies that there will likely be a rebound effect when not subject to the drug the next morning. Thus my arms being worse very recently while I have been taking Ambien every night may be explainable. This is a limitation of such drugs against their intended purposes: the absence of Ambien will make it all the more difficult to get to sleep when it is discontinued; the absence of Ativan will tend to increase anxiety after some days/nights of use. The neural cellular biology is largely understood for this phenomenon.
While I do not expect (or even recommend) that people here spend any time trying to read this, I am going to include it here for posterity to the very few who may have an interest now or in the future. My recent "diet" over the last couple of months or so has very likely appreciably altered my insulin levels (and other related hormone ratios) which could very easily have a detectable effect on compromised neural and muscle cells:
When I reach the weight I want (a few more pounds), I will increase carbs a bit and may stabilize levels with a positive effect on my arms. I will post on any results in a few weeks or months maybe.
I know exactly what you are talking about with the phone. It is a challenge to hold it to my ear without using my elbow for support. I use the speaker phone whenever possible.
I am thinking about trying the Ambien. I don't notice anything different when taking the Ativan, but I have been using it since I got the diagnosis. I tried going one night without it and couldn't sleep at all. I would like to stop taking it, but if I don't sleep I feel really rotten.
I do use a roll-on Bio-Freeze ointment on my arms. It does seem to help with the stiffness. I put it on in the morning, at night before bed, and after exercise. I get it over the counter at our local drugstore. You may want to give it a go.
I hope you start to improve and make a full recovery. I will keep you posted about anything new that I learn. I am talking with another ALS patient who goes to a different clinic. I am going to ask about his treatments. He is very concerned because he is losing weight very quickly.
Well, I guess we just keep up with the trials and errors.
I tried the Ambien and noticed no real difference except that I was kind of groggy the next morning. I didn't notice any change in the weakness, although on Monday, I tried a workout again. Why, I don't know. I guess I just miss going to the gym. But, I paid for it on Tuesday. I hope you will improve or at least not get worse. I will be sure to pass along any info I may get.
Perhaps the Ambien didn't affect me because I have been taking the Ativan for so long???
Deb, I did not notice that you posted until now. Thanks for trying it. It can make me groggy in the morning too.
You paid for the working out. Your arms? Wonder after a few days if your arms and shoulders will feel any stronger, weaker or no change after a few some time of pain and stiffness?
I chickened out and never did any lifting. I will try it eventually. I did try it months ago and was sore and stiff and could not tell if it ultimately helped or hurt or neither. However, my arms then were in about the same condition they are now so I do not expect real good things from a new try. I may try working out just my right arm and shoulder as it is much less affected.
I am wondering if my taking a B multivitamin for a while was responsible for a set back for me. The Niacin part of it. I cut it out and my arms have stabilized. Plus part of what I predicted in a previous post about the Ambien may be in effect. I quit it too.
The doctors at Ford. If you asked (it may not have been appropriate), had they ever heard of that spinal tape test for ALS? Did they sound convinced of the diagnosis?
You were on statins due to high cholesterol years ago? Is that the only reason? What are your levels now? What were they then?
Yes, my arms were very stiff and weak after my workout. I tried to avoid the upper body machines, but you have to use or tense your arms on some lower body and mid body machines. I am going to take a month and just do my range of motion exercises for my arms and work my legs on the treadmill and riding my exercise bike---no arms, though--and see if I can notice a difference.
At Henry Ford, they told me not to do anything that would make my muscles sore. My left arm is stronger than my right (I am left-handed) and they encouraged me to do more with it---like one or two pound weights. I would exercise your right arm a bit. Nothing heavy though. I know I am using my shoulders to compensate for my arms. I feel like I am "hunched" up a lot. How are your wrists? My left wrist is much weaker than my right which is odd. I do lift 1/2 pound weights with my wrists, but I find that it makes the muscles in my forearms sore. I guess I need to do it more consistently.
I go back to Henry Ford in January and will inquire about the spinal tap. They sound quite sure of their diagnosis although they speak of cases that get so far along and then stop. I am taking a list of items to ask this time---when I get there everything flies out of my head.
I started with statins at 35. I was on them for 13 years. Bad family history and my cholesterol was in the 280 range. (My dad had a massive heart attact at 40 and died waiting for a heart transplant at age 60. He had several bad years during that time. My brother had bypass surgery at age 35 and died at 37. He was overweight and had high cholesterol.
I had a cholesterol check about 6 months ago---I am back up to 257. I don't worry about it anymore.
How is your cholesterol? Do the supplements seem to help?
Have a great weekend. Deb
P S--Therapy bands are good to exercise your shoulders and arms a bit. Use the yellow one to start and start with only 5 or so reps.
My cholesterol last time checked (9/6/07) was the following. I did eat my first baked potato in weeks the evening before which was my last meal. It was a large one. I had already started baking it when I remembered my up-coming test. But maybe that gives you an idea of the (lack of) importance I put on those tests. I ate it anyway. It was good. I'd do it again. I imagine it might have skewed things a bit but I really do not know about timing for carb loads and their immediate effect on the numbers. Here goes:
(I would have to check my old records from the statin days to see how things have changed, but I do remember my best total C reading was the week of my "crash" and it was just under 200 -- for me, that's too damn low, I like where I,m at, and also like where you're at.)
The time before was an impromptu addition to other test we decided to do on the spot after that afternoon appointment (no fasting). This blood was to test the Dr's theory that I might be low on testosterone. He was right of course -- BTW, a specialist/urologist I saw fairly recently questioned the numbers. She said, for instance, an erection would be out of the question at a level of 115.62 and said the test should have immediately been redone to check it the next morning. Oh, well. However, she did not have much of an idea how much the timing of the test, which is normally done in the morning, would have skewed downward the results. Next time I had it done (with the paperwork results in hand for that too for her) I was just under 400 which is low normal. However, I had been taking 100 mg of DHEA for about two weeks since getting the results of the first "T-Test." So who knows? BTW again. I am now going to another specialist later this month because her practice (the urologist) was not up speed on Human Chorionic Gonadotropin. They don't use it. (They do use an MRI though, which she was leaning toward doing to rule out Pituitary function problems -- um, no thanks, for now, while that is a reasonable hypothesis, I guess.) The book I had read said it was a likely fit for me -- that hormone tells your body to make its own Testosterone rather than using the gel application of testosterone. I found a sympathetic pharmacist (thanks, K-Mart) who divulged who was prescribing it locally and I made an appointment with him. He is reported to know what he's doing. We'll see. No legal action from me if he doesn't though. I'm ready to experiment at this point. A side effect is that I am losing head hair fast and also "shrinking." The T factories are no longer on the job...
Ok, here is what was taken on the spot one afternoon (8-13-07):
These days all I care about is the Triglycerides. The lack of fasting probably got the above number "artificially" high. I expect that right now my Triglycerides are very good -- and partly with the supplements and partly with the diet change over the last few weeks or months. I don't eat refined carbs or much starches except for D-Ribose which I use to sweeten my coffee and green tea. (Tea is a new one for me.) I now have a new favorite book I am half way through and will read another chapter right now even though I have plenty of work to do otherwise:
"Good Calories BAD CALORIES" by Gary Taubes. Amazing. Much falling into place now about how it all works. And where the erroneous ideas came from and why they are still around. BTW, one reason they are still around is simply due to the fact that if everyone ate right there would be mass starvation as there is not near enough of the good food to go around -- that's partly my own "theory" but it's right. It is easily deduced, but not real wise to just up and say it, let alone put it in print.
No comment on my wrists. I lack the degree of dexterity to some degree and they appear not to be as stable. My guitar playing days were probably pretty much over anyway. I am keeping an eye on them though. I think you mentioned someone with ALS losing weight. I am now keeping an eye on that too. But testosterone will lean men up and lower fat ratios. There is too much going on now to make any judgment what is responsible for what. However, I look better than I have in some time body wise. If the weight loss stops here, I'm happy.
I'm rooting for you. Your family may have had high carb intakes. That sure appears to be the real cause of heart disease (as well as high blood pressure and diabetes among other western civilization diseases), but let that word get out, and there starts the problem... There just ain't enough to go around. Meat takes a lot of carbs to make, which is needed to feed people and fruits and vegetables are in short supply too if the world diet were to shift.
I just wanted to clarify the weight loss thing. The local man here that was just diagnosed with ALS is losing massive amounts of weight. He is/was quite overweight--I have not seen him recently. He said he is losing a lot of weight on 2500 calories a day plus drinking Ensure.
I am still at my starting weight although my body composition has changed. Skinnier arms and shoulders, bigger tummy. I lost 10 lbs right after I was diagnosed (from anxiety, most likely) but then I slowly put it back on.
I wish the best for you. I really think you are suffering from statin damage.
I know that I have been consuming more carbs than I used too. I will begin to work on that also.
As always, I thank you for the info you provide, and I hope you have a good day.
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