Zocor and increasing muscle weakness

[tyyosh]

Spacedoc and others - Help! I need to figure out what I need to get started with to at least try to beat this and reverse anything that I can stop from degenerating further.

I just got finished spending a terrible week going to 2 emergency rooms, a neurologist, and a GI doc, as I have muscle weakness that seems to be getting worse and severe GERD that happened a week ago, causing a downward spiral of sleeplessness, bad eating, and stress-induced weakness. If anyone can provide a short link of all the suggestions on what to do, and how to tell if it's getting worse, I would appreciate it. I have looked around and found many pages on this site where there is some info, but it's hard to tell if I end up with the one list that I need. This seems to be progressing in weeks with changes noticeable almost each day... is that conceivable that it would degenerate this fast? I stopped the Zocor after about 35 days, around 2 weeks ago.

I started Zocor around Oct. 2007 after having muscle pain on Lipitor. Only 10 mg. Doctor said that any side effects - pain, etc. - would reverse if we would just stop this one too. In about 4 weeks, I woke up with tight muscles from head to toe. I now realize it is the kind of tightness you get when you work out a muscle and it gets stressed and tired, and that just doing the same daily routine worked all those muscles. The doctor ran all kinds of vitamin, muscle tests, but found nothing. The neurologist ran nerve conduction and muscle tests and concluded that I was fine and that it must be stress and lack of sleep. Only after going to this site did I determine why I might still be getting weaker.

But here I sit, where everything now feels about twice as heavy as before, and every so often I notice something else - yesterday, it was the small fingers and toes - feeling weaker and unresponsive. This keyboard that I so easily typed on now requires conscious effort to get the keys pressed.

Does anyone have any ideas? I am calling the neurologist Monday to discuss how we would look at this. Thank you

[Ray Holder]

Hi Tyyosh, and welcome

You have typical statin damage, I would forget the neurologist, he probably won't have any idea how to aid statin damage.

The main problem arises from lowering of your Coenzyme Q10 by the statins, most sufferers find it necessary to supplement with Q10 softgels at a dosage of about 200 mg daily, to avoid further damage (I need 800 mg daily to aid heart problems).

Muscle pain and weakness is usually caused by Carnitine deficiency consequent upon the reduced Q10 level. Supplementing with L carnitine will usually allow fat to be used as mucle energy fuel, inhibited by the lack of it, and secondly, will restore the clearing away of energy production waste products from the muscles, so that lactic acidosis is no longer a painful problem.

L carnitine needs a little care in finding the right dosage, start with about 500 mg first thing, on rising, and increase, 500 mg a time, after 3 days at each dose level, up to 1 to 2 grams daily. If you take the high dose immediately, your bowels will probably object, so build up carefully, your bowels will become loose if you are taking too much, but stop if you get a satisfactory level for you, or continue until you do so. I need carnitine in greater dosage than most, due to post polio, and take 6 to 8 grams daily with no ill effects after 5 years, but you should find 1 to 2 grams sufficient.

The side effects are most UNLIKELY to disappear by themselves, the doctors often say that they will, but many people on this forum know otherwise. I hope that you have caught the problem early enough to have avoided more permanent damage.

Ray

[adec]

Hi tyyosh, and welcome to the forum. Been there done that. I hope you continue to read this forum, and share your statin recovery story.

Two years ago, my mom too -- almost overnight -- started experiencing abnormal muscle pain and weakness, as well as neuropathy -- (among a host of other ailments: hearing and vision loss, cognitive dysfunction, transient global amnesia, neurological disorders including Parkinson's-like symptoms, sleep disorders etc.)

Only after discontinuing statins (Lipitor) and starting on a rigid supplementation program did she begin to make a miraculous 1-1.5 year-long recovery. Otherwise, she was misdiagnosed with many diseases and disorders except the root cause of drug-induced stain poisoning, every test came back negative. Yet today she is a picture of overall perfect health.

I would suggest CoQ10, acetyl-L-carnitine, and alpha-lipoic-acid for your statin recovery, ASAP! Take this particular formulation along with vitamin C (250-500mg) and a 1-3 tsps of a vitamin-E-rich oil (canola, olive, corn, soybean, sunflower, fish) to further enhance bioavailability.

Also... enzymes and/or probiotics for your chronic digestive problems. Make sure to properly refrigerate probiotic capsules.

Time-released melatonin, 1 capsule at night, for your sleep problems.

I've tried to make the recovery process as easy as possible for you. Good luck.

[tyyosh]

Thanks so far.

I ordered this:
NSI CoQ10 + Alpha Lipoic Acid + Acetyl L-Carnitine -- 60 Capsules
Looks like i need to build up to 2 tablets per day.
Extra L-Crarnitine 500 mg per tablet to get to the 1G level.
Vitamin C with Quercetin and Bioflavonoids 500mg per tab
Norwegian cod liver oil (for the oil - I have always wanted to add this to my diet anyway).
Mega digestive enzymes
Flora

I am very Vitamin D deficient. Do I need to start putting in mega doses of that?

Anything else, and how do you figure what levels you personally need to do? I am 160 lbs.

[tyyosh]

My lower esophageal sphincter muscle seemed to quit working, and it seemed to get worse over the past week (judging from the GERD symptoms). Has anyone heard of the potential effect on the internal involuntary muscles?

Thank you

[adec]

I was just trying to give you a general guideline, or rule of thumb. Some people simply manage better with a single combination pill instead of a handful. There are just so many combinations and products out there, enough to make your head spin. And except for CoQ10, no one has defined true statin recovery through even a single scientific study, much less the upper limits of these supplements. *Just getting a single scientific body to acknowledge the wide variety of major statin-induced illnesses would be a huge accomplishment.*

I would feel perfectly safe with 500mg daily of carnitine, 300mg of CoQ10, and 250mg of alpha-lipoic-acid daily, no matter the person - or bodyweight. Everything else looks great on your list. Things can be complicated at first, but hang in there. And feel free to e-mail me with any further questions.

[adec]

On a side note, I have to express my disappointment -- exasperation even -- over the deletion of the links contained in my posts, even if they were commercial sources. It's counterproductive to the already complicated effort of diligently providing information to those who urgently need it most. I'm hoping it's a server hiccup and nothing more.

[cjbrooksjc]

Ty: I would increase your Q10 intake to at least 1 gram (1,000 MG) daily, 1 gram Omega 3 fish oil, and one gram L-Carnitine taken with meals. Buy, at a health food store, capsules containing B6, B12, and Folic Acid; take one in the AM. Don't use a multi-B vitamin which includes B3 (Niacin), B3 may cause your symptoms to worsen. Vitamin C only stays available in the body for a short time so take it (1 gram) with meals. Olive oil is OK, and Canola oil (if it is cold pressed), but stay away from processed cooking oils. I see your NSI formulation contains Alpha Lipoic Acid. That, as is stated, is an ACID and can cause GERD if you take too much. I also suggest you order a Q-Gel CoQ10 called ACTIVEQ (200Mg caps) - go to *http://www.epic4health.com/20ac30sousub.html be sure to remove the * before you attempt to use the address; this is not a 'promo' - it's simply supposed to be the best bio-available Q10 on the market. Let us know how you are faring. This can be a scary time indeed for those of us affected by this poison. You just have to put your shoulder into this monster and push (along with taking the supplements). Stay in touch please.

Best,

Brooks

[tyyosh]

Brooks, thanks that was helpful. How much B? I am seeing from the same supplier I made the big buy from earlier - B6 25 mg, Folate 800 mcg, B-12 400 mcg

I am really just shooting in the dark right now. CoQ10, L-Carnithine, etc. just trying to get enough of everything so that I can get started. Of course, since I have a GI scope operation on Wednesday, I will have to suspend a lot of this until afterwards (for example, Vitamin E).

Also, do people still take multi vitamins and minerals? There are a lot of things that I cannot account for by just buying these individual things.

Thank you

[cjbrooksjc]

tyosh: I buy a sublingual (melts under the tongue) B6,12, FA combination at my local health food store (very small, red pills in a very small plastic bottle). I am currently out and don't have the empty nor remember the formula. I simply pop one in the AM. I consider B vits helpful but not as important as the other elements. Just get a tab or sublingual pill with those three in formulation - I don't think the amount is too important - most are in the same ballpark. As for people's supplement habits - I don't know. I personally had little confidence in them (the multis; not the people). I also drink protein shakes with added Creatine, but I would hold off on that sort of additional complication until you are comfortable with the other supplements, ; that way, if something begins to bother you, you will have fewer things to suspect.

Regards,

Brooks

[tyyosh]

I just realized a potential issue.

With this severe GERD that came on, the only way to survive it was to take AciPhex twice daily (per doctor). Otherwise, the total burn at night, even when sleeping sitting up, was horrific and dangerous.

Will having no acid in the stomach mess up with absorption of supplements?

[Darrell]

I hate Zocor. I really hate Zocor.

I'm about three years ahead of you on this, tyyosh. Been there, done that with Zocor. Concentrate on the CoQ10 and carnitine -- those are the most important for now.

You are probably experiencing some "exercise intolerance", which means your muscles start to ache after some use and it takes a long rest period to make the ache go away. I used to have to rest for about two hours after an hour of normal physical activity. The carnitine fixed that, but I lived that routine for about 16 months before Ray Holder pointed me to carnitine. Do NOT try to work through the ache -- you may be just compounding the muscle damage. I did a bunch of physical therapy early on and I now think it probably did me more harm than good.

I don't want to plant ideas in your head, but I developed an astigmatism in one eye and tinnitus in both ears at about the same time. Those have not improved or worsened. (I junked a computer monitor before I realized the high-pitched "sound" was actually in my head.)

Also, don't start another statin or Zetia. Zetia set me back into serious problems very quickly.

The GERD will probably get better if it is statin related, and I'll bet it is. I had similar problems for awhile, but I'm not sure of the timing or Zocor association (if any) because I had bigger issues on my mind like staying alive and being able to walk. You may want to sleep on a bed wedge for awhile. Talk to your doctor about prescription symptomatic relief.

The vitamin D problem is important to treat too.

[cjbrooksjc]

Ty: Low stomach acid should not be a problem for you. There is little work the body has to do to break down the supplements you will take.

Brooks

[tyyosh]

I am calling my neuro Monday.

A neuromuscular specialist. Did I see that a biopsy or something like that mentioned elsewhere that could be done to see muscle issues? I could discuss with her.

You guys answering me are a Godsend. You cannot believe the week this has been (or maybe you can...)

Thank you
Ty

[tyyosh]

Darrell, which version of carnitine do you use?

The one with Acid or the regular one? I have seen opinions on both but am really interested in muscle.

Also, did you keep getting worse after quitting? I am over 1 week off of it and still getting weaker. Legs seem like logs. Things get heavier each day.

Thank you

[tyyosh]

Due to the severe weakness of my esophageal sphincter now (basically stomach liquid just bubbles up at night, even though I am sleeping in a char)
I am supposed to have a GI scope done. They put you under anesthesia. But this thought occurred. In such a condition am I strong enough to make it through this and actually wake up? Or would this be a bad idea, in others' opinions?

Lots going on to figure out. Thank you

[cjbrooksjc]

ty: I think you are having a dialog with someone outside the forum. All I see are your entries and not the other end. If I have failed to reply to you it may only be because I am not sure if your entries are intended for the forum membership at large.

Brooks

[tyyosh]

Brooks,
Sorry I realize what I had done on the last couple of posts was start the post in the Subject and then pick it back up in the body. I will go back and edit those two. Does that sound like what you are seeing?
Thank you

[Darrell]

All the carnitines I've tried have worked for my muscle problems. Don't worry about that now. That's probably splitting hairs relative to your current problems. [Right now I take 1,500 mg of Acetyl L-Carnitine HCl and 1,500 mg of Propionyl-L-Carnitine daily (500 mg of each, 3 times daily). Acetyl because it also crosses the blood-brain barrier and Propionyl because I am very trusting of the source and it is claimed to have better bioavailability. I also like to reduce my long-term risk from impurities and dose variances by not single-sourcing.]

Don't worry too much about the symptoms varying day by day -- it's the longer-term trend that counts. Even after I got things pretty-well stabilized, very bad days would pop up for no apparent reason. I called them "bad leg days" and I knew it was one as soon as I got out of bed. There are many variables: digestion, metabolism, liver and kidney function, exercise, glucose levels, movement during sleep...

At the point I quit Zocor, I felt so weak I thought I was getting a strange case of flu. I realized it wasn't flu when I was too weak to climb the stairs. I felt "better" in a few days, but it was a long, long time before I felt good. There were a lot of sleepless nights due to leg aches for 16 months until I started carnitine, and even a few after that. Hang in there. We feel your pain.

If I was facing anesthesia, I'd want to be well-dosed on Q10 and carnitine for sure. For me, the carnitine takes effect in about 45 minutes and lasts for three to four hours. Be sure they know what you're taking. Q10 can lower blood pressure for one thing.

[cjbrooksjc]

Ty: One thing I forgot to mention regarding GERD. Carbs; esp. bread and sugar, can exacerbate the problem. I would recommend you tend toward a hi-protein/low carb diet for the time being and stay away from any bread or other refined wheat products and, of course, sugar. If sugar is a must, use Splenda instead, and go easy on that. A good rule of thumb: if it's white, it's not alright. Yes, that means potatoes too. See if that helps.

Brooks