I think I'm more confused than ever!

[shadoww]

I've been off Tricor for about 2 weeks, and Lipitor for about a week. I also stopped taking my Fosamax. All these things cause muscle and joint pain and I've been in so much pain its hard to even walk down my own hall in my house. My feet and ankles have been swelling for about the past 2-3 mo. almost on a daily basis. Blood pressure has alwsay been good but dr. put me on Benicar with a diarhetic in it. She says it might help the swellings. Not much help there. So since I've found this site, I've taken myself off the 3 above drugs. I've also started taking 1000 mg of CoQ10 and 1000 mg of L Carnitine but still not a lot of relief.

Today I had a Thallium stress test for my heart. Only my legs wouldn't let me do the treadmill part so they did the chemical one instead. I've never felt such pain, pressure, nausea, the whole nine yards. I was able to complete about 3/4 of the test and it was a lighter dose of the chemical too. But they said they got enough for them to be able to use the test. I'm not going to repeat it again, not putting my body thru that again unless absolutely necessary. No results of course, probably get them Fri. and have an angiogram scheduled for Sat. morning.

My questions still are: Will I ever get better? This has been going on for the past 2-3 mo. with very little improvment. I've never had this in my life before and I don't know where to turn next. Will I always have this pain, or will the CoQ10 and L Carnitine ever kick in enough to help?

[shadoww]

I meant to also add to the above post, that today when I had my stress test, I told the cardiologist that I'd been off the statins between one and 2 weeks. So he says, that if I haven't been taking them, and I'm still having pain, it can't be the statins!! Can that be true or can it just be that it takes longer to see improvment after being off them? Like I said, I'm more confused than ever now.

[sos_group_owner]

Hi "Shadoww",

Re: I told the cardiologist that I'd been off the statins between one and 2 weeks. So he says, that if I haven't been taking them, and I'm still having pain, it can't be the statins!!

Absolutely FALSE! but the typical reply from 99% of ALL doctors.

Re: Can that be true: NO!

Re: Or can it just be that it takes longer to see improvment after being off them? Like I said, I'm more confused than ever now.

There are so many misconceptions about statins and their effects on our body and your doctor's assumption is what most of them think. We are all individuals. Some have immediate relief when they stop statins, others suffer for a long time. CoQ10 helps some immediately, and for others it doesn't seem to help. Some people experience permanent muscle damage from just a few statin pills.

I don't know if I can make you feel better, but honestly, I can't figure out what the heck your doctor was thinking! (probably wasn't) Did your doctor order a CK or CPK test (to check for elevated enzymes that can indicate muscle damage)? Ck/CPK is not fool proof... some need a muscle biopsy to prove muscle damage from statins.

For your situation, you were taking several prescription meds: Fosamax [now has an FDA warning: can cause a serious bone disease called (ONJ) Osteonecrosis of the Jaw], Lipitor and Tricor - WOW - dangerous duo. Plus you are borderline diabetic (generic glucophage). Stopped smoking... GOOD 4 YOU!

OK, just some of my observations. I don't know what your numbers are: LDL, HDL or triglycerides, but my suspicion is that your trig's are high and that would tie in with your borderline diabetic status. High trig's are the primary reason doctors prescribe Lipitor or Tricor, but prescribing them together is very dangerous... really increases the risk of adverse effects and permanent damage.

The primary reason triglycerides are elevated: high carbohydrate diet
The worst offender ~ foods containing "sugar" and white sugar. The other white foods: flour, rice, bread, potato, bread... also cause elevated triglycerides and blood sugar levels.

The medical community has convinced almost everyone that the low fat low cholesterol diet is healthy. The problem with this theory is that it results in someone eating a high carb, low protein diet devoid of beneficial saturated fat which results in all of our numbers being out of whack and an open door for LOTS of prescription drugs. A diet low in good saturated fats (coconut oil or butter) causes low HDL (good cholesterol).

You are already taking high doses of CoQ10 and Acetyl L-Carnitine (best form of L-Carnitine). CoQ10 should be in gelcap form (not powdered) and containing some vitamin E or taken with vitamin E to metabolize properly.

In addition to CoQ10 and Acetyl L-Carnitine, take the remaining rec0mmendations in Dr Graveline's "statin alternatives":
http://www.spacedoc.net/statin_alternatives.htm

Statin alternatives reduces/prevents inflammation, IE: anti-oxidants, reduces platelet stickiness and controls (toxic) homocysteine levels.
1) buffered aspirin - 81 mg (buffered contains beneficial magnesium)
2) CoQ10 - 100 to 150 mg
3) folic acid - 400-800 mcg
B6 - 80-100mg
B12 - 200-250mcg
4) Omega 3 (fish oil or cod liver oil) [ There is no upper limit.]
(Flax seed oil is also a source of omega 3 but does not have the anti-inflammatory benefits of fish oil or CLO)

These four items/categories have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects.

Cinnamon (spice isle variety - C. cassia) also helps to control triglycerides and blood sugar levels. Cinnamon is available in 500mg capsules. Take one or two daily along with trying to eliminate "white" foods from your diet. My hubby lowered his trig's from 300 to 150 in 3 months using this strategy... and no side effects.

May I ask why you are seeing a Cardiologist? (I guess that should have been my first question)

Fran

[Darrell]

"So he says, that if I haven't been taking them, and I'm still having pain, it can't be the statins!"
Yeah, and if you stop smoking and develop lung cancer the next month, it can't be from the cigarettes. Or if you drink too much alcohol, quit, and discover you have liver damage the next month, then it can't be the alcohol. Who taught him that side effects are guaranteed to clear up instantly? What a moron he is. Get a new doctor!

I got "better" when I quit Zocor, but that pretty much just meant losing the flu/fatigue feeling. My leg continued to be a problem for almost a year and a half. It did improve slowly over time, but it was still a significant disability right up to the day I started L-Carnitine.

Consider raising your L-Carnitine. I'm taking 2,000 mg/day. Ray is taking more. I wish that it worked for you as well and as fast as it did for me, but that doesn't appear to be the case. Still, you may get some benefit.

I hate statins. I hate them with all my heart. It pains me to come here and read these threads about all the damage they are doing. I'm only coming back in hopes of helping someone as much as Ray Holder helped me.

[shadoww]

[quote="sos_group_owner"]Hi "Shadoww",

Re: I told the cardiologist that I'd been off the statins between one and 2 weeks. So he says, that if I haven't been taking them, and I'm still having pain, it can't be the statins!!

Absolutely FALSE! but the typical reply from 99% of ALL doctors.

Re: Can that be true: NO!

Re: Or can it just be that it takes longer to see improvment after being off them? Like I said, I'm more confused than ever now.

There are so many misconceptions about statins and their effects on our body and your doctor's assumption is what most of them think. We are all individuals. Some have immediate relief when they stop statins, others suffer for a long time. CoQ10 helps some immediately, and for others it doesn't seem to help. Some people experience permanent muscle damage from just a few statin pills.

I don't know if I can make you feel better, but honestly, I can't figure out what the heck your doctor was thinking! (probably wasn't) Did your doctor order a CK or CPK test (to check for elevated enzymes that can indicate muscle damage)? Ck/CPK is not fool proof... some need a muscle biopsy to prove muscle damage from statins.

For your situation, you were taking several prescription meds: Fosamax [now has an FDA warning: can cause a serious bone disease called (ONJ) Osteonecrosis of the Jaw], Lipitor and Tricor - WOW - dangerous duo. Plus you are borderline diabetic (generic glucophage). Stopped smoking... GOOD 4 YOU!

OK, just some of my observations. I don't know what your numbers are: LDL, HDL or triglycerides, but my suspicion is that your trig's are high and that would tie in with your borderline diabetic status. High trig's are the primary reason doctors prescribe Lipitor or Tricor, but prescribing them together is very dangerous... really increases the risk of adverse effects and permanent damage.

The primary reason triglycerides are elevated: high carbohydrate diet
The worst offender ~ foods containing "sugar" and white sugar. The other white foods: flour, rice, bread, potato, bread... also cause elevated triglycerides and blood sugar levels.

The medical community has convinced almost everyone that the low fat low cholesterol diet is healthy. The problem with this theory is that it results in someone eating a high carb, low protein diet devoid of beneficial saturated fat which results in all of our numbers being out of whack and an open door for LOTS of prescription drugs. A diet low in good saturated fats (coconut oil or butter) causes low HDL (good cholesterol).

You are already taking high doses of CoQ10 and Acetyl L-Carnitine (best form of L-Carnitine). CoQ10 should be in gelcap form (not powdered) and containing some vitamin E or taken with vitamin E to metabolize properly.

In addition to CoQ10 and Acetyl L-Carnitine, take the remaining rec0mmendations in Dr Graveline's "statin alternatives":
http://www.spacedoc.net/statin_alternatives.htm

Statin alternatives reduces/prevents inflammation, IE: anti-oxidants, reduces platelet stickiness and controls (toxic) homocysteine levels.
1) buffered aspirin - 81 mg (buffered contains beneficial magnesium)
2) CoQ10 - 100 to 150 mg
3) folic acid - 400-800 mcg
B6 - 80-100mg
B12 - 200-250mcg
4) Omega 3 (fish oil or cod liver oil) [ There is no upper limit.]
(Flax seed oil is also a source of omega 3 but does not have the anti-inflammatory benefits of fish oil or CLO)

These four items/categories have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects.

Cinnamon (spice isle variety - C. cassia) also helps to control triglycerides and blood sugar levels. Cinnamon is available in 500mg capsules. Take one or two daily along with trying to eliminate "white" foods from your diet. My hubby lowered his trig's from 300 to 150 in 3 months using this strategy... and no side effects.

May I ask why you are seeing a Cardiologist? (I guess that should have been my first question)

Fran[/quote]

______________________________________________

hi Fran. Primary dr. advised the cardiologist because my feet and legs have been continuaouly swelling for the past 2-3 mo. She ordered a heart echo and doppler for my legs to see if that was the problem. The heart echo said my heart was basically ok, but not relaxing between beats and recommended the cardiologist. Stress test was today, angiogram is on Sat. So thats why I'm where I am now. Still no answers just lots of questions. This hit me out of the blue it seems. I'd been on Zocor for years with some muscle aches, but I just chalked it up to "getting older". Then she did the blood work in March, said Zocor wasn't doing the job and put me on Vytorin. Then I noticed my feet and legs swelling like crazy every day and thought it was the Vytorin. She took me off the Vytorin and put me on Lipitor. Thats where I was when I stopped taking it last week.

I started taking cinnamon capsules a couple weeks ago. I already take a handful of other vitamins, vit E included, plus fish oil and some other good ones. Now added the CoQ10 but don't think its gel caps. Just powder, and have added the L-Carnitine.

[Ray Holder]

CoQ10 must be taken with oil or fat, as it is not soluble in water and is mostly going to waste unless taken with oil. If you only have it in powder form, mix it with a little oil on a teaspoon, or sprinkle it on the butter on your bread, its a bit expensive to waste, but try to get your next supply as gelcap, oil filled.
My heart was weakened a great deal by the statin, and got worse over the next 14 months after I stopped taking them, but came back quickly after I took Q10. Now, 3 years later, I am completely dependent on Q10, I took a different (inferior ) make for 2 weeks recently, and had quite nasty angina until I got plenty of the original sort back inside me.
Swollen ankles are a sign that the filling phase of the heart is weakening, due to the oxygen supply being reduced by lack of Q10 in its muscle, keep up the Q10!!!
I have been thinking recently, if someone deprived your whole body of air, as by suffocation or strangling, that would be murder, but the statin side effect of reducing Q10 means that your body is deprived of oxygen and thus dies off slowly and insidiously, a few cells at a time, over the following months and years, and that's called preventive medicine !!

[shadoww]

[quote="Ray Holder"]CoQ10 must be taken with oil or fat, as it is not soluble in water and is mostly going to waste unless taken with oil. If you only have it in powder form, mix it with a little oil on a teaspoon, or sprinkle it on the butter on your bread, its a bit expensive to waste, but try to get your next supply as gelcap, oil filled.
My heart was weakened a great deal by the statin, and got worse over the next 14 months after I stopped taking them, but came back quickly after I took Q10. Now, 3 years later, I am completely dependent on Q10, I took a different (inferior ) make for 2 weeks recently, and had quite nasty angina until I got plenty of the original sort back inside me.
Swollen ankles are a sign that the filling phase of the heart is weakening, due to the oxygen supply being reduced by lack of Q10 in its muscle, keep up the Q10!!!
I have been thinking recently, if someone deprived your whole body of air, as by suffocation or strangling, that would be murder, but the statin side effect of reducing Q10 means that your body is deprived of oxygen and thus dies off slowly and insidiously, a few cells at a time, over the following months and years, and that's called preventive medicine !![/quote]

Ray, thanks for the info. This morning I took it and ate a slice of buttered bread, but have a question for you. Til and IF I can find the gel cap ones, will it work the same if I'm taking a fish oil cap, a flax oil cap and vitamin e cap? Aren't they oil too and will they work that way if taken together?

[Ray Holder]

The Q10 must dissolve in oil or fat so that it can be available as free molecules to enter its receptors in the digestive system, I do not think the other oil would necessarily come into close enough contact with the Q10 by just eating them together. You are probably better mixing the powder with some oil or butter or similar fat to dissolve it in the oil or fat.
Tests have shown that absorbtion is very low otherwise.

[Ray Holder]

Darrell,
I couldn't agree more with your remarks about statins, thank you for your support and help in getting the message over.
I owe my life to the information provided by Tessa Jupp of the W Australia Polio Network 3 years ago, after a great deal of research by her and the Doctor there on the need for carnitine, and for pointing me to the fact that statins lower Q10. I had searched for this knowledge unsuccessfully for a year or two previously, and she provided me with the vital clues. I have tried to spread the news ever since that time, but those who should have the health of the public foremost in their minds seem to have little interest, and expect the "prestigious" goverment institutions to come up with all the true enswers, but nothing could be further from the truth, as they have access to biassed trial and study information, and no real voice is there in the real interests of the patient.
I have just been reading Uffe Ravnskov's book "The Cholesterol Myths", he goes into great detail of the selective use of statistics and trial results, with a lot of other shenanegans, right from Ancel Keys to the present, and I have studied a large 1990s trial which beggars belief in its methods and in the lack of logic and lateral thinking in making its conclusions. Who is big enough to take on the domination of the drug market by forces who have so little real concern for what they are in business for--the health of the patient.

[harley2ride]

Not sure how much it helps, but I've had statin injury since Feb. 2004. Stopped the Crestor in March 2004. I was on 2000mg fish oil daily, and 1000mg coq10, and 500mg magnesium. Tried L-Glutamine and noticed no difference. Tried DHEA and noticed no difference. Lately I've been taking Morning - 1000mg Fish oil, 300mg gel L-carnatine, 300mg Magnesium. Lunch is 300mg gel L-Carnatine, 300mg Vitamin E Gel. Dinner is 1000mg Fish Oil, 300mg L-carnatine, ambitriptine, and restoral (or I can't sleep).
History: Pain started in Feb. 2004 with extensive muscle cramps/spasms which spread to all major muscles over a period of a month. Even stopping in March 2004, gave no improvement. I started Fish Oil and coq10 immediately. Had some minor improvement for a period of time. In May of 2004 I was activiated by the Army National Guard. I recieved a smallpox booster, and in June was given Anthrax vaccine, even though the Army knew I had neurologic and myopatic disease with high white blood cell count. I was returned from active duty on July of 2004. Shortly after returning from Fort Bliss, my muscle pain/cramps worsened, I developed a sleep disorder (could not sleep at all, without prescription sleeping pills), pain worsened to the point of having to take pain meds multiple times a day, increased muscle spasms in the arm which was injected with anthrax vaccine, and started having vision problems (sensitive to light), seeing strobe lights in my vision, dizzy when I move quickly or stand up or squat and rise, and constant head pain (not a headache), with neck pain (feels like where my spine connects to my head). Can't sit for too long or legs hurt really bad, can't stand for long, can't keyboard much without extensive pain, constant low grade fevers (normal body temp dropped from normal to 97.0 degrees, so I'm cold or hot all the time, loss of approx. 50% of my strength, can't ride an exercise bike for more than 3 minutes, and my legs just lock up and it takes about 30 minutes before I can walk. And, I'm tired all of the time. I have no energy, and throught the day, I nod off, but only for a few minutes. Even when I'm sick with fevers, I only sleep for about 30 minutes. I've even stay up for 36 hours just to see if I can sleep. I get really tired and run down, but don't sleep. I sleep for 30 minutes and wake up, 30 minutes and wake up. My legs and arms spasms daily. I get horrific eye strain when working on my computer monitor, and notice the flicker, which I never noticed before, even with my professional monitor set to the highest refresh rate. I can't drive very much, as steering causes my muscles to hurt and cramp. Even with my now taking 2000mg fish oil daily, gel L-Carnatine (900mg) daily, Vitamin E 300mg daily, Magnesium 600mg daily, and two baby asprin, I only can hold where I'm at and can do a little bit more than if I don't take all that. I can only eat once a day (small meal), and I still don't lose any weight. Even though I have not excercised at all in over a year, my muscles are still firm (probably due to all he cramping and spasms). It even hurts to hold my head up for very long as it makes my neck muscles start cramping. I know from research, that the smallpox booster and the anthrax vaccine, contributed to my problems, but it will be difficult to prove. Thank god I have records showing my condition and symptoms prior to May 2004, and after July 2004. I did see Dr. Phillips at Scripps Memorial in San Diego, and he told me point blank that I have classic statin injury, yet in his report, he states that it is LIKELY due to the statin drug. I'm currently gathering all my medical records (civilian and military), and making an appointment with the VA to plead my case, as there is no doubt in my mind, or my familys mind, that I got worse and had additional symptoms and problems after being activated and receiving the vaccines. I can't stress enough how important it is for everyone to keep a journal on your condition and keep track of what makes it better and what makes it worse. I'm going to try upping my L-Carnatine another 300mg daily to see if there is any improvement. Before I upped my L-Carnatine, I could not even ride my motorcycle. My arms would lock up when I tried to steer or use the clutch and hand brake. I can now ride (limited), but around town, I have to keep putting the bike in neutral, as I can't hold the clutch in for very long. Even going fishing my arms get tired quickly, and I have to stop and rest a few times (that is for catching 14 crappie). The only good news is that I no longer have any fear of dying. Since this all started, I have developed multiple allergies, one being bee stings which never bother me before, and now I'm deathly allergic. But I just don't care anymore. I just do what I like to do, and if something happens, it happens. I refuse to live whatever the remainder of my life is, scared. I now have no fear of anyone or anything. Where I live in Idaho, I can't find any doctors that specialize in this type of injury, so I have given up even trying (except for the suppliments which I take). In the past two years, I've undergone extensive testing and seen multiple doctors to the tune of approx. $40,000.00 out of pocket, and hundreds of thousands from insurance. I'm hoping and praying that I can get in with the VA, and save some money on my med's, which are easily running $100.00 a month, each and every month. I sure hope that some of you have better luck than I have had. If I could find a teaching hospital that would take me, I would gladly be a test subject, if there were any hope of it helping me get at least part of my life back. I've had to sell my horses, limit all activities, and hire help to do meanial chores. I can't even weedeat my property, as my arms get tired before I finish (and that is if I can get the damn thing started before my arm wears out.) Thank god I have a riding mower so I can mow my lawn. Archery hunting is gone! Hunting is nearly gone! There aren't any areas of my life that have not been affected. When this first happened, I couldn't sleep on my right side, due to pain in my right arm. That finally reduced, and now I have so much pain in my left arm that I can't even lay on that side (which is what I got used to over the past 18 months. Now I have to learn to get comfortable on my right side again. It is so unfortunate that doctors and lawyers can't or won't do anything to help in any way. I went so far as to send letters to every major news agency, write my congress and senate, and all talk show hosts, begging them to look into this further. But I guess we need a lot more numbers and voices, before anyone will listen.

[shadoww]

A few days ago I said that I had started taking 1000mg CoQ10 and 1000 mg L-Carnitine. Well I told you wrong. I was totally off base with my CoQ10. The milligrams on the bottle are 200mg and I was only taking one a day of those and 2 a day of the L-Carnitine.

I guess what I need are some basic guidelines as to how much CoQ10 should I take on a daily basis? They are also some sort of a gelcap, its a dark yellow sort of pill and when I cut it open it was pretty much the same stuff inside. Sort of looked like peanut butter consistency, maybe a little thinner. I know you all aren't medical dr.s for the most part, but I'd just like a sort of guideline to use so the meds I'm taking aren't wasted.

I am also guessing that might be why I've not had any better results than I have so far, is because I wasn't taking enough CoQ10. It's been a little improvment, once in a while, not a lot. I'm wearing my support knee highs to help with the swelling of my feet and ankles. As well as taking a water pill.

[sos_group_owner]

Hi "shadoww",

CoQ10 in gelcaps ~ if you cut it open it would be the consistency of peanut butter or a thick oil. CoQ10 in powdered form is much less effective than gel or oil. CoQ10 capsule should contain some vitamin E or taken with vitamin E (d-Alpha NOT dl-Alpha). dl-Alpha vitamin E is the synthetic form and has less benefit than d-Alpha. If you can find a vitamin E containing both tocopherols and tocotrienols, even better, as "complete" vitamin E contains four major forms: alpha, beta, delta, and gamma. We purchase a "High Gamma" E at Walmart that contains both tocopherols and tocotrienols.

If you are already taking 200 mg of CoQ10 in the AM, try taking an additional dose in the evening. Start with 100 mg, then increase to 200 mg. That will give you 400 mg daily (split dose). My husband took 600 mg (split dose) for several months and now takes 500 mg as a maintenance dose.

There is not specific level of CoQ10 that works for everyone. You need to experiment to see which level works best for you. If you take meds for BP, monitor your BP as you increase CoQ10 dose, as it can lower BP.

L-Carnitine should be in the form of "Acetyl L-Carnitine". Acetyl L-carnitine is a delivery form for both L-carnitine and acetyl groups.
More info from PDR hHealth: http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/ace_0013.shtml

Suggested use is one or two 500 mg capsules daily. I think some that post to this forum take three 500 mg capsules daily. Again, everyone is different. The main problem: there is no handbook that tells us how to recouperate from statin adverse effects. We have to find out what works best for ourselves.

Fran