Voice and Swallowing Complications with Lipitor

[cjbrooksjc]

webito: FYI: the author of this forum, Dr. Graveline, has also been diagnosed with ALS, as have others here. If you do a search for ALS (above) you'll find LOTS of entries.

Brooks

[Ray Holder]

Hi Webito
I have been examining your carnitine figures in the light of the W Australia Polio network's findings in dealing with carnitine supplementing needs. They subtract the free from the total figure, to give the acyl figure, so the results become

Free 41.7
Total 47.9
Acyl 1.2
% acyl to total 2.85

For a male post polio, they find that free figure should be in the higher range of normal, and find 50 is necessary, or even more.
The percentage figure gives an idea of the use being made of the carnitine, and aim for 17 or 18%, too low a figure indicating that too little was being used.

You can see the paper for yourself on *www.upnaway.com.au/poliowa click on research, and then on carnitine, there are two articles referring.
I know the problem is not identical with statin damage, but the mechanism of statin carnitine damage has not been investigated in depth, and the polio case gives a foundation upon which to work.

Hope you getr some help

Ray

[webito]

Hello Ray,
Thank you very much for your research and your time.
Since I don't know anything about this the only choice that I have is trial and error. I am a 52 years old man with an usual weight of about 195 lbs.
When I started statins I was about 240 lbs and after running about 900 km for about 5 month I arrived again at 195 but now no matter how much I eat it goes all to my belly and keep losing weight, today Iam at 186 lbs. and I noticed that Iam losing a lot of muscle. I started with the L-carnitine 10 days ago and today Iam at 2000mg daily. Next week I'll be going for another ck test but in the meantime I will keep increasing by 500mg every 3 days.
What do think is the safe and efficient quantity I should stop at ?
Again, sorry to bother you so much
Regards
Webito[/img]
________

[Ray Holder]

Hi webito
As long as you stop increasing carnitine when your bowels start to object, and possibly go back one step, carnitine appears to be quite safe. I find I need 10 grams a day now, but the post polio requirement adds to the statin damage need.
If the carnitine doesn't work for you. something else may causing the peoblem, but it pays to give it a try, it helps a lot of people

Ray

[webito]

Hello Ray
Thank you for the info.
Are people with ALS able to stop muscle wastage?

Regards
________
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[Jude Franey]

Hi Ray,
I have also had Polio and statin poisoning (40mg. crestor & zocor for 28 months). I take all the supplements but only 1.5 grams of carnitine.
How do you split up the 10 grams that you take? Do you take it when you feel a need for it? Do you take some before an activity that you know will cause pain? Do you take some when you feel the pain setting in?
Thanks for all the great information you have provided,
Jude Franey

[Ray Holder]

Hi Jude

Welcome to another post polio, there don't seem to be many of us about on this forum.

I had no muscle pain, only muscle wastage and weakness and I really had a combination of the onset of Post Polio Syndrome simultaneously with statin problems, but post polio was only just beginning to become generally known at the time.

You would be well advised to study the W Australia polio Network site which I pointed out to webito on this thread 4 posts back, and follow their recommendations. There is a lot of helpful advice on the poliowa pages.

I now take a fairly large dose first thing on rising in the morning, and a smaller one at 11.30 and 3.30. If I take any later in the day, I have trouble falling to sleep at night, or getting back to sleep when I get out in the night.
I have built up to the present size dose to keep my very weak back strength at the best possible (but still low) level, and the need to avoid bowel problems, not always totally compatible. I take about 6 grams am, and 2 grams each time later, but I believe that to be a quite high level, and I have a tendency to have angina type chest pains at night if my carnitine is not high enough. Q10 shortage also plays a part here, and sometimes it is difficult to decide which is responsible.

You would probably benefit from more carnitine, Poliowa suggests increasing the daily total dose by 500mg steps , taking 3/4 days between each increase until relief occurs, or your bowels start to object, when you go back one 500mg step. L carnitine seems more suitable for me and for post polios without statin damage. 3grams seems to be a rough average daily dosage.

I am not very active these days, but poliowa suggest adding a little more carnitine before undertaking extra activity to the normal.

You may be interested in my paper to be found in spacedoc index, Fitting the Pieces Together.

Ray

[Linda Paulhus]

It's difficult not to notice how many are dx'd with ALS. A form of ALS is bulbar. Please do a search and read the description. Neurologists usually waste time scanning over and over again. It happened in my family. If there are no abnormalities; allegedly nothing is wrong with you.

The bulbar, we have discovered, is caused by a digestive disorder. It simply means the liver is damaged to the point food waste can not be processed through the liver. While sleeping, the bacterial mucus from foods "backwashes" and contaminates the throat and muscles.

See page 2 re: the liver and digestive disorders. Do a search on John Foster, M.D.,[Harvard;non-pharma research] ALS. It explains in brilliant detail the connection between the gut and brain, etc.

[maryp]

Bobby,

I don't want to scare you and maybe you have already found an answer. I was diagnosed with Dermatomyositis, a rare autoimmune disease after taking Lipitor for just three weeks.
One of the symptoms that first occured were a problem with swallowing and loosing the use of one vocal chord. It took me 8 months and 8 specialists to finally get an answer. The "round' muscles that that close off the esophogus from the stomach were weakened and allowed acid reflux. The acid and the weakened muscles were damaging my vocal chords. Untreated it could lead to cancer of the esophogus. I also had swallowing problems that allowed me to asperate, usually liquids into my lungs.
There are 4 types of myositis diseases. Dermatomyositis is distingushed by a rash that accompanies the muscle weakness and pain. It is the most treatable. Poloymositis doesn't have the rash and responds somewhat to treatment. Inclusion Body Myositis has no rash and no real treatment. It eventually destroys all muscles. There is also a Juvinile version of Dermatomyositis that strikes children. The lucky ones eventually outgrow it if they survive.
If you read the fine print that comes with Lipitor prescriptions they list myositis as a possible side effect. Their commercials even mention reporting any unusual muscle pain or weakness. By the time you feel those symptoms it may already be to late.

I hope stopping Lipitor stops your symptoms permanetly. If not have your self tested for mysoitis.

Good luck,

Mary P

[BobbyH]

Mary

Thanks for the information. I'll speak to my doctor about it and have myself checked out.

Thanks again

BobbyH

[eml256]

one of my husband's symptoms was softened voice volume and slight difficulty swallowing, as well as hand tremor, loss of arm swing while walking and a shuffled gait. he was diagnosed with parkinson's disease after 4 yrs of lipitor therapy......
since statins deplete coq10, a vital substrate of the mitochondrial electron transport chain, we have researched "mitochondrial cytopathy" and incorporated many of the vitamin and supplement recommendations into my husband's daily regime. Dr. Bruce Cohen and Dr. Deborah Gold have authored a comprehensive article titled : mitochondrial cytopathy in adults: what we know thus far.

*http://www.ccjm.org/pdffiles/COHEN701.PDF

since my husband has been diagnosed with Parkinson's, he takes 1200 mgm/day of coenzyme q10; this dosage was shown in a small clinical trial to result in decrease in progression of symptoms in individuals in the early stages of the disease.

[cjbrooksjc]

enl256: Great find. I'll go back and read more after a nap. This is a tome!

Thanks,

Brooks

[BobbyH]

eml256

Thanks for the lead, very timely for me. I'll make a point of studying it before my next neurologist visit. I'll be sure to quizz him on it.

[JL]

Yes, after about 6 weeks of being on 20 mgs lipitor my mother began having swallowing problems. Before that she was swallowing the supplements that I was giving her but after that she complained that they were too big and I had to end up buying capsules and putting the powder or liquid in her food. She always had problems swallowing pills but the Lipitor definitely worsened it. It was real obvious to me.

A recent study indicated that statin drugs activate the atrogin-1 gene which is the gene responsible for destroying muscles including the heart muscle, throat muscle, etc. so it is very understandable for any muscle part of the body to malfunction when taking a statin drug including lipitor.

We have to also understand that doctors are trained NOT to listen to their patients when patients complain about possible side effects. Everything has to be "evidenced based" meaning that they have to put the patient through a whole battery of tests to rule out everything first before deeming the drug to be the culprit. The problem with statins like lipitor is that the only test they have to indicate harm is the ck test which usually doesn't show problems until it is too late.