Need to know...

[Cathy]

Can you both (Ray and Darell) tell me exactly how much of the L-carnitine and COQ10 you are taking? I'm on very strong narcotics for the pain caused by lipitor. My new P.M. Dr. says its all Fibromyalgia, she won't accept the idea of statin induced anything. I have to play her game just to get rid of some of the pain caused by Lipitor. Presently I'm taking 900mgs of COQ10 and that has helpped the neuropathy in my feet greatly. I still have no strength in my arms, hands, legs ect. I feel my muscles have been greatly damaged and are not "recovering" as well as they should be. My skin is just hanging. Yes I am overweight, tho I have lost 50# in the last year. Yes I am older ,turned 54 on my last birthday. I just got new "wheels" my first wheelchair last week. Lipitor not only took my memory, it stoled my whole life. OK I'm rambling again, but whould really be greatful for any info that is helping anybody. Thanks in advance. Cathy

[Ray Holder]

Dear Cathy
Has your doctor taken a CK blood test as this will probably be high. Normal is up to about 200, mine was about 500, about twice normal, but a lot of muscle wastage was occuring and if this is so with you it gives the doctor some evidence of what she needs to see reduced with carnitine. I am so glad that my doctor was fully supportive.
Carnitine dosage informatiion I originally got from the Polio Network of West Australia as they introduced testing and its use for muscle wastage in the late effects of polio, which also arise from a deficiency of carnitine. They advise starting at 500 mg for a few dats and increasing in 250 mg steps until your bowels object and then reducing by one step. Darrell has taken a large leap and seems to have got away with it, but you may need to get accustomed to larger doses.
I had CK tests when in hospital last year for a different matter and had not been able to have my carnitine for a while. It was 500, and when I restarted it at 6.30 am, the test at 10.0 am was down to 200, very quick acting and very convincing for the doctors!!
It is said to be best taken first thing in the morning, I have have mine in some lemon squash (I dont know if that's what you call it in USA, but just a little cordial with added water) drink
I take 500mg Q10 and have gone up over the 3 years to a present 3grams a day of L-Carnitine in powder form some of which is better than others, mine comes from W Australia

[Darrell]

I have "stabilized" at 2,000 mg/day of L-Carnitine. I take a 500 mg tablet first thing in the morning and another about every four hours after that. I take a 200 mg Q-10 with each L-Carnitine, so I'm at 800 mg/day on Q-10. I have felt so much better for the last week since I started L-Carnitine that I am starting to hoard the stuff so I won't run out if the local supplies temporarily run low. I've seen it at the grocery store, the pharmacy, and a discount department store, so that's a bit of a silly phobia, but do not want to go back to those leg problems even for a few days.

[Ray Holder]

I know the feeling, I get mine from Australia, because the local stuff is not as good, and it has to come 10,000 miles!!
Ray

[GWardMD11]

Cathy and Daryll... I have many of the same symptoms as you. I'm an Ex-Lipitor (2 years) taker. You may notice I'm asking this question on several of the links on this forum, but would you mind telling me what your background is for the past 15 years? Most specifically, job functions. Also include that of your spouse, and no... I'm not selling anything. I may have some addtional information depending on your answer.

[Darrell]

Okay, I'll bite. I'm a technical professional, working in an office most days except for occasional trips of a few days duration. My wife is a speech therapist.

[Cathy]

I'm 54 yrs old. Been a house-wife for most of my life. Been "care-taker "of my whole family, now have to take care of me. Was on Lipitor 80mg for almost 4 years. Tested every 6 month for liver, kidney ect. No tests were abnormal. Only one Dr. would admitt that lipitor is the reason for my situation at present. Unfortunately he passed away 6 months into treating me. Anyway, more info then you asked for. My husband is an engineer and I have 2 grown daughters. What info do you have to share???? Cathy