High Cholesterol Message Board
04-02-2006, 05:26 PM
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#1
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Senior Veteran
(male)
Join Date: May 2004
Posts: 1,077
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Cerebellar Ataxia and cholesterol lowering medication
Has anyone been told they have Cerebellar Ataxia of "Symptoms consistent with Cerebellar Ataxia" while they were taking cholesterol lowering medications of any kind?
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04-08-2006, 06:35 PM
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#2
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Junior Member
(female)
Join Date: Apr 2006
Posts: 16
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Re: Cerebellar Ataxia and cholesterol lowering medication
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Originally Posted by finres
Has anyone been told they have Cerebellar Ataxia of "Symptoms consistent with Cerebellar Ataxia" while they were taking cholesterol lowering medications of any kind?
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My mother passed away 5 years ago from "Cerebellar Ataxia". She never took statins, however my doctor just perscribed "Pro****l" 40 mg's for me. I bought them...very costly but they are stitting in my med's cabinets unopened. I am very frightened to take them and knowing my mother's history of Ataxia and not knowing if it was genetic or caused by a viral infection, I am refusing to take them at this time.  I do not want to open the door to this monster of a disease. My mother suffered a very slow and painful death. Just the idea that statins can interfer with one's muscular system is enough to scare the heck out of me.
I am working on lowering my cholesterol naturally by weight reduction, red yeast rice tablets, red wine and fish oil tablets. If after 6 months of time I cannot lower it with this method I will rethink the statins....but it's going to take a lot convince me.
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04-09-2006, 01:16 AM
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#3
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Senior Veteran
(male)
Join Date: May 2004
Posts: 1,077
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Re: Cerebellar Ataxia and cholesterol lowering medication
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Originally Posted by uneamie
My mother passed away 5 years ago from "Cerebellar Ataxia". She never took statins, however my doctor just perscribed "Pro****l" 40 mg's for me. I bought them...very costly but they are stitting in my med's cabinets unopened. I am very frightened to take them and knowing my mother's history of Ataxia and not knowing if it was genetic or caused by a viral infection, I am refusing to take them at this time.  I do not want to open the door to this monster of a disease. My mother suffered a very slow and painful death. Just the idea that statins can interfer with one's muscular system is enough to scare the heck out of me.
I am working on lowering my cholesterol naturally by weight reduction, red yeast rice tablets, red wine and fish oil tablets. If after 6 months of time I cannot lower it with this method I will rethink the statins....but it's going to take a lot convince me.
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I know how devastating that cerebellar ataxia can be. People don't seem to realize that you might be under a cloud the rest of your life not knowing if she had the genetic kind. A specialist in California recently said that my mother most likely has "cerebellar ataxia syndrome" caused by lipid lowering therapies. (zocor, lipitor, zetia). However, hers started with imipramine (she was given this for urinary incontinence-which was caused by her doctor prescribing calcium channel blockers, and too much calcium). 12 other compounds are know to cause this also. amiodarone, amitriptyline, chlorcyclizine, chlorpromazine, clomipramine, fluoxetine, imipreamine, perhexiline, tamoxifen, thioridazine, and zimelidine. The bind to the NPC 1 protein and while cholesterol synthesis is normal, it hides cholesterol in pockets in the body, (brain, liver, other organs). Yes is lowers the serum cholesterol in the body...the only kind of cholesterol that doctors check. In recent months it has been shown that Zetia works on the NCP1 L1 pathway.. You can look up niemann pick and symptoms....guess what ataxia. I don't know if your mother had atrophy of the cerebellum....or if she had the spino cerebellar genetics test. After a lot of research, (and stupid answers from doctors) I was assured by an ataxia specialist that cerebellar ataxia is not genetic...only SPINO-cerebellar ataxia. I would not take the cholesterol medication, if my cholesterol was 3000!!!! Also the only kind of cholesterol that is dangerous is oxidized cholesterol. Hope this helps...I have a conference call with a niemann pick specialist to see if Zetia can lower serum cholesterol, but hide it away in truly dangerous areas. (so far a bio-chemist says yes....if it works on the pathway that they now say it does) (it was merck (the maker of zetia) that just now found the pathway. Nothing like not knowing how your drug works, but that it just lowers cholesterol!!!!!!
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04-10-2006, 12:24 AM
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#4
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Junior Member
(female)
Join Date: Apr 2006
Posts: 16
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Re: Cerebellar Ataxia and cholesterol lowering medication
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Originally Posted by finres
I know how devastating that cerebellar ataxia can be. People don't seem to realize that you might be under a cloud the rest of your life not knowing if she had the genetic kind. A specialist in California recently said that my mother most likely has "cerebellar ataxia syndrome" caused by lipid lowering therapies. (zocor, lipitor, zetia). However, hers started with imipramine (she was given this for urinary incontinence-which was caused by her doctor prescribing calcium channel blockers, and too much calcium). 12 other compounds are know to cause this also. amiodarone, amitriptyline, chlorcyclizine, chlorpromazine, clomipramine, fluoxetine, imipreamine, perhexiline, tamoxifen, thioridazine, and zimelidine. The bind to the NPC 1 protein and while cholesterol synthesis is normal, it hides cholesterol in pockets in the body, (brain, liver, other organs). Yes is lowers the serum cholesterol in the body...the only kind of cholesterol that doctors check. In recent months it has been shown that Zetia works on the NCP1 L1 pathway.. You can look up niemann pick and symptoms....guess what ataxia. I don't know if your mother had atrophy of the cerebellum....or if she had the spino cerebellar genetics test. After a lot of research, (and stupid answers from doctors) I was assured by an ataxia specialist that cerebellar ataxia is not genetic...only SPINO-cerebellar ataxia. I would not take the cholesterol medication, if my cholesterol was 3000!!!! Also the only kind of cholesterol that is dangerous is oxidized cholesterol. Hope this helps...I have a conference call with a niemann pick specialist to see if Zetia can lower serum cholesterol, but hide it away in truly dangerous areas. (so far a bio-chemist says yes....if it works on the pathway that they now say it does) (it was merck (the maker of zetia) that just now found the pathway. Nothing like not knowing how your drug works, but that it just lowers cholesterol!!!!!!
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Wow...you've really done some research there. Actually I did a bit myself but just today found an article that mentioned something about "statins depleating the body of the enzyme CoQ10 which can then cause "myopathy" and they suspect "cellebellar ataxia" among other things. This enzyme is especially needed for the heart which is a muscle. They are doing extensive research and believe that supplements of this enzyme can help Ataxia, Parkinsons and MS patients etc.
I believe my mother had atrophy-deterioration of the brain stem but she was tested several times for the genetic strain as well. The doctor believed that her ataxia was not genetic but he never finished a complete genetic work up before she died. In order to rule out that it was genetic he had to test her for every single strain of ataxia which he claims are many. He believed she ended up with it due to a virus or a brain injury. She had about 15 shock treatments at one time in her life so it may be possible that it injured her brain and showed up when she got older. We don't know for sure. I just feel that the doctors were sooo vague on giving information about Ataxia and it's causes.
Having watched her slow death and the misery she went through I am just very skeptical about taking any medications. At the moment I am on high blood pressure and "metformin" for diabetes. I think that is about enough for me. Do not want any more pills in my body.
I am doing the "red yeast rice" and taking supplements of CoQ10...hopfully this will work.
Thank you for posting all that information. It was enlightening. I will have to look further into it.
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04-10-2006, 01:46 AM
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#5
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Senior Veteran
(male)
Join Date: May 2004
Posts: 1,077
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Re: Cerebellar Ataxia and cholesterol lowering medication
any time....from what i understand about ataxia....its highly likely that the shock treatments caused the damage to the cerebellum. beta blockers (high blood pressure) also deplete Coq10. As they told us, most likely if no family member had cerebellar ataxia it is highly unlikely that it is genetic. I can't remember how many genetic types of ataxia there are, but I believe that it is about 15. Mother had all of the genetic panels done at Athena through Washington university in st. louis. THey are very vague on ataxia....because ataxia in itself just means movement disorder...thats all. Kind of if you don't know whats wrong put it there. If it was of the brain stem that would be different than cerebellar ataxia. If she was depressed, there is a good chance that she took one of the drugs i mentioned. If so in that instance she probably has a lipid disorder...(look up niemann pick) Niemann pick is genetic, but these medications create a psuedo niemann pick....(which mimics np but is not the actual disease). Also Zetia works on this same pathway, which is something that they just made public...(i bet they knew all along). What blood pressure medication are you on? Some can raise triglycerides, expecially the beta blockers, except Coreg. Also some can raise cholesterol. I'm glad that someone understands the reason why i usually blast statins. You know what cerebellar ataxia is like. Since doctors under report statin side effects, we never know how many people are affected and how they are affected. You Coq10 is probably the best thing you could do. Dr DiMauro, and ataxia expert at cornell...has confirmed in published papers that they believe the Low Coq10 in the cerebellum was problably the initiating cause that caused the brain damage that lead to cerebellar ataxia. You probably need to take 600mg of Coq10 to be on the safe side. Dr. DiMauro suggest the 600 when you have suspected mitochondrial damage. ALso you're right about the parkinson's. Many people say it doesn't help them. However it has been proven that it can stop the progression of parkinson's, and about a lot of people have noticed a reduction of 44% in their symptoms. You also might be interested to know that Merck (zocor) has held a patent since 1990 for Zocor plus Coq10... (however they don't make it)...look it up, its interesting to note the reason for adding the Coq10. It will be the smoking gun (with finger prints) when the law suits over statins start to hit the courts.
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