Same old story...need help

A message board to discuss personal experiences of Lipitor and its effects.

Same old story...need help

Postby Lesliesmom » Tue Dec 23, 2008 10:57 am

Hi Everyone,

First off, thanks so much for having this forum. I'm sure many have benefitted by it's existance.

My Mom started Lipitor about a year ago and started having pain, muscle weakness, neuropathy, fatigue, slight cognitive problems and muscle wasting. We read about the dangerous affects of Lipitor and told her to stop taking it. Her cholestrol was not that high, but because she is diabetic I think they felt she was at risk for heart problems. :roll: The muscle wasting took away one hip. She thought she was imagining things as her hip got smaller amd smaller.

Since stopping it, she has felt a lot better, in that she doesn't get as weak and she is not having anymore cognitive problems. I read about the CoQ10 here and picked up a bottle of 60mg tabs. Our pharmacist suggested to go start off low. I have since picked up a bottle of 100mg. She is still getting weakness, and is very scared that the symptoms she had in the beginning will come back. I've been telling her she has to gage her activities and not push it, but sometimes she says she doesnt have to push it. Her body, and legs won't go. She also has leg pain at night neuropathy.

Should she be taking a higher dose of the CoQ10 and another drug I read about here. Is it normal to still have this weakness?

Sorry so long, but I appreciate this forum. There is definately a need for it!!

Leslie
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Postby Allen1 » Wed Dec 24, 2008 7:24 am

Hi there Leslie,

I think you should also give your Mom some L-Carnitine to help with her muscle weakness problems. Although it certainly helps a lot of us here, it still isn't a cure but does make life that bit easier. You should also look into Vitamin B, C and D to help with absorption of the Q10 and L-Carnitine. Ray Holder has many posts on this subject and are well worth reading for more information on dose size etc.

You could also take a look at:- (remove the (*) first

*http://uk.reuters.com/article/healthNews/idUKPAR16547620080101

All the best,

Allen.
Last edited by Allen1 on Tue Jan 13, 2009 7:03 am, edited 1 time in total.
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Postby uncle2blade » Wed Dec 24, 2008 12:33 pm

Lesliesmom,

Welcome,
Please read all the posts by adec on this forum just go to member list and look her up.
Craig
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Postby Lesliesmom » Sun Jan 11, 2009 2:07 pm

Hi Allen,

Sorry for taking so long to reply. I couldn't get signed in properly and finally I copied and pasted my user name and password and it worked. The adminstrator here must have the patience of a god.

I was looking at the different kinds of Carnitine and didn't know which one was best. So L-Carnitine works for muscle weakness? My Mom is already on CoQ10 at 60mg twice a day. From what I read it should be more but am not 100% sure.

She is on all the vitamins for Osteo, but I forget which ones they are.

I'm not sure how to search for Ray Holder? I copied and pasted the link below only it didn't take me anywehere. Hopeless today!

Thanks for responding,
Leslie
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Postby Lesliesmom » Sun Jan 11, 2009 2:09 pm

Hi Craig,

Thank you for the welcome! I tried to do a search on adec, but maybe it didn't work because I was not logged in properly?

Take Care Leslie
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Postby Lesliesmom » Tue Jan 13, 2009 9:56 am

Hi Allen,

I believe I did rermove the ", but who knows. Thanks so much for pasting the info for me. I really appreciate it.
I have read a lot of the info you provided. The problem I have now is having my Mom tell her doctor about the L-Carntine supplementation. He is less than understanding, and one of the school that doesn't believe that Lipitor can do that. Right now she is having a nuculear bone scan to determine whether she has Osteomylitis or a fungal infection. She has a break in the small toe that is draining periodically. The surgeon says if it were Osteomylitis it would drain continuously. She has had numerous x-rays with a tie for and against. She is at the point, where she would have the toe taken off, if it will get them off her back. It's also hard for her to travel back and forth to doctors.

I realize this is more than you need to know, but thanks if you read this far. She is very concerned about this fatigue, and I have noticed a slight decline in cognitive symptoms. What dose should she be taking of the L-Carnitine and which brand is better. What should her doctor be looking for in regard to her diabetes?

Thanks so much,
Leslie


Ps, this is a lot like dealing with Lyme disease. Many doctors don't believe in it, and a lot of the symptoms are the same.
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Postby cjbrooksjc » Tue Jan 13, 2009 12:41 pm

Leslie: There is a study underway at the Univ. of Buffalo Biochemical Genetics lab which you and/or your mother may want to investigate. Call Cathy Kern at 716-829-2695 on Tue, Wed, Thur, or Fri. for details. It does involve a blood draw to determine inherent susceptibility to Statin side effects, and that alone may be useful information to you. You pay for the blood draw and submit the receipt to Buffalo U. for reimbursement. Cathy will tell you all about it when and if you call.

Best,

Brooks
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Postby Lesliesmom » Tue Jan 13, 2009 12:57 pm

Hi Brook,

I would in a heartbeat, but I am from Canada. Thanks anyway.

Leslie
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Postby Allen1 » Tue Jan 13, 2009 4:05 pm

Hi there Leslie,

Before I forget, your mother may ache a bit more for a couple of days when she starts out on L-Carnitine (its normal and it doesn't happen to everyone).

Most of the information below was given to me by Ray Holder although he worded it a heck of a lot better that I have here and he also knew about my personal situation ok.

You can buy L-Carnitine capsules or choose the cheaper alternative of the powder like most of us here in the UK do, there is also Acetyl L-Carnitine which some may find works better for them.

How to use L-Carnitine Powder
It would be better to start off with a smaller dose at first (less than 1/4 teaspoon) to let your mother get used to it for a few days and then one 1/4 of a level teaspoon L-Carnitine mixed with a little water (around 500mg) once a day for 3 or 4 days then twice a day for another few days then three times a day. If your mother finds her bowels are loose then back off to 1 less dose or lower the size of the doses. Two doses a day may be enough but you will have to play it by ear to find out what works best and you may have to up the dose size or even lower it a little to get the best results.

I use a small whiskey glass to mix my water and L-Carnitine in and I personally use 1/2 heaped teaspoon of L-Carnitine with each dose, this may also be what your mother needs but you do have to build up to that amount over time or her bowels will object.

The cheapest place that most of us use for L-Carnitine Powder is "BulkNutrition.com" and for me in the UK the 500 gram pack is just about right to save on paying any import duties.

1 x L-Carnitine Powder (500 grams made by 1fast400)

(Update! I have just seen the new prices and would really look around before buying) :shock:
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Postby cjbrooksjc » Tue Jan 13, 2009 6:31 pm

Leslie: I would call just the same. I didn't read any restrictions relative to citizenship, and besides, you can see Canada from Buffalo - and they may not notice anyway since Canadian blood is nearly identical to US blood. AND, AND - the investigating physician is Dr. Geogirene Vladutiu; I don't think she originated from the US either. ;O) I'd give it a shot. It's just a phone call.

Best,

Brooks
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Postby Lesliesmom » Sun Jan 18, 2009 11:59 am

Hi Allen,

Thanks so much for all this info. Unfortunately my Mother is kind of leary to start anything new. I thought she wanted to, but will mention it again.

I saw many types of Carnitine through a freebie website that originates in Canada, but they do have some UK freebies. They have a coupon there for your first order of anything at Iherb. You can do a search of Canadian freebies, and it should come up. There are varring prices with a section to rate them.

Take Care Leslie
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Postby Lesliesmom » Sun Jan 18, 2009 12:02 pm

Hi Brooks,

I appreciate your reply, but my Mom has gotten cold feet on this :(

Thanks,
Leslie
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Postby Lesliesmom » Sun Jan 18, 2009 12:13 pm

I know I am replying to my own post, but I just wanted to give the link to that coupon. Go to *http://coupons.smartcanucks.ca/companies/iherbcom-canada/
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Postby Allen1 » Mon Jan 19, 2009 6:58 am

Hi there Leslie,

after what your Mom has gone through I don't blame her, and it is something to fall back on if she wants to and if things don't improve. BulkNutrition also do promotions ie save 10% on orders over $30 at times, I cannot believe these price increases, although there is a worldwide meltdown going on, prices like this are not going to encourage people to buy anything unless it is an absolute essential.

1 x L-Carnitine Powder (500 grams) = $24.99 (5 Aug 2008)
1 x L-Carnitine Powder (500 grams) = $47.99 (today's price)

These are the exact same manufacturer and from the same company, truly shocking!

All the best,

Allen.
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Postby Lesliesmom » Mon Jan 19, 2009 9:49 am

Hi Allen,

Yes she has gone through a lot. I left her some more info to read from here, so, who knows.

Thats what confused me, was the price differences. The capsules have varrying prices. Some from the same company, and some have good ratings and some so so.

Thanks again,
Leslie who may be back :wink:
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