you piqued my interest - is this what is wrong?

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

Postby SomewhereNTexas » Thu Oct 05, 2006 8:37 am

well i used that link and the closest one is over 200 miles away - I am not too sure that would be very practical - although my son does live in that town ;)

any other suggestions?
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Reply for "SomewhereNTexas"

Postby sos_group_owner » Thu Oct 05, 2006 1:31 pm

Hi SomewhereNTexas,

Re: any other suggestions?

Traditional medical doctors that specialize in naturopathic might not be listed at the link I gave you. Our doctor isn't listed, but she specializes in naturopathic. Her name was given to us by our Chiropractor.

Another option: You could call doctors in your area and specifically request an "interview" or "consult appointment" to determine the doctor's "view" of statins and specifically "statin's adverse effects (AE'S)" and how that doctor would treat your AE's.

It may take you awhile to find the correct doctor, but the "interview" should give you a good indication of what to expect on future visits. Presenting your case up front can save you a lot of time and frustration. Come to the interview armed with a detailed "health diary" of all your symptoms associated with statins and any articles that support your belief that statins are causing your symptoms. Make an extra copy of your health diary for the prospective doctor. It's tough for them to ignore complaints that are in writing.

Fran
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Texas doctor

Postby Ray Holder » Thu Oct 05, 2006 2:43 pm

Dr Peter Langsjoen practices as a cardiologist in Tyler , Texas, he is the authority on Q10 and I have had help from him by email when I first had problems. I don't know if you are anywhere near him.

Ray
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Postby SomewhereNTexas » Thu Oct 05, 2006 4:02 pm

the interview idea might work --

as for tyler it is like 8 hours away ;)


thanks everyone for the ideas
i will let you know

as a side note.... the muscle aches are a little less today ~ so it looks promising
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Postby innkeeper1000 » Mon Nov 13, 2006 8:51 am

Somewhere In Texas...would like to hear how you're doing...I'm ordering carnetine today and am taking COQ10...Have been off Lipitor for a couple years, but find my symptoms reappearing...would like to communicate with someone in the same situation...
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Postby SomewhereNTexas » Tue Nov 14, 2006 11:11 am

thanks for asking...

my muscles are still pretty weak - last night i couldnt even break spaghetti in half to throw it into the pot to cook it :(

as long as i take the carnitine and coq10 i feel ok -- but if i miss a day i can feel the difference before the day is over. I start aching again until i can get back on the suppliments ....

the swelling is still out of control, however.

i am afraid that this will be with me the rest of my life - and I am damn ticked off about it

Last night my boyfriend got so upset watching me try to cook supper that he suggested I get an attorney and see if I can collect any money for the damages....
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Postby Dee » Tue Nov 14, 2006 11:59 am

Hi SomewhereinTexas,

Lower leg and feet swelling was one of the first things I developed while taking Pravachol. That started with in about 8 weeks, and I have been on lasix for it ever since (which is 5 years). The swelling did improve after about 6 months off the Pravachol, and with the lasix some days my legs are almost normal in that respect.

As for lawyer, this is the only one that I know of that is going after a statin that is still on the market and that statin is LIPITOR. You may want to read this:

[http://www.krumlaw.com/press.html]
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Somewhere In Texas

Postby innkeeper1000 » Tue Nov 14, 2006 12:00 pm

I've had that feeling that my energy was all leaving my body and that I would die...and I was uncomfortable enough that I didn't care....mostly when I went to bed and my legs ached...which is not all the time.
I'm 63 and starting l carnitine tomorrow...been on CoQ10 off and on for years and have started back up.
Have noticed that I can't open jars, etc.
Hope you feel better and keep in touch. Judy
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Postby SomewhereNTexas » Tue Dec 12, 2006 6:27 pm

well i tore my tricep a couple weeks ago -- my doctor isnt at all concerned and I am feeling really helpless again

anyone have any suggestions on what i can try to help with this muscle problem i am having -- i already take l carnitine daily
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Postby innkeeper1000 » Tue Dec 12, 2006 8:37 pm

somewhere: sorry to hear you're not feeling well. I take 100 mg coq10 am and pm...l carnitine when I remember...feeling much better, but leg muscles are still sore and have some trouble up and down stairs...

I was wondering....when I was taking Lipitor, I didn't have any energy and stopped walking daily....,don't walk anywhere now if I can help it....wondered if I should make myself get exercise...maybe just to keep muscles in shape.

thought I might lose some weight and see if that helped...I think it did....only 5 lbs so far...

Hope you feel better and keep in touch.
Inn
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Postby SomewhereNTexas » Tue Dec 12, 2006 10:20 pm

yeah i am taking the co q10 as well....
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Postby innkeeper1000 » Wed Dec 13, 2006 10:15 am

I used to work out and they had a NuStep machine...easy on legs....you're sitting down and it's more of a push....I was thinking of trying that again....I looked into purchasing one...about $3500...but it also works your arms....it's a cardio workout..
Inn
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Postby SomewhereNTexas » Wed Dec 13, 2006 8:20 pm

well you reminded me by talking about exercise equipment that the dr did tell me to exercise more -- and i told him that i was afraid to tear more muscles and he told me i wasnt afraid to tear muscles i was afraid to be healthy....
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Postby innkeeper1000 » Wed Dec 13, 2006 9:50 pm

evenin'....I wonder if just an easy workout would be OK...nothing strenuous...but just enough to give you energy and keeping muscles toned...(I'm better at giving advice than taking it myself!)....

I feel that I stopped doing anything physical because I had no energy and from there it went to pain.....and I wonder if it's because I stopped doing anything no matter what the reason?
Inn
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lovastatin

Postby redheadedmary » Mon Dec 18, 2006 10:04 am

I have noticed that a lot or most of you are older than me. Please don't think your symptoms are from "getting older" as some of you have said. Its not age its the statin drugs making you feel so awful.
I am only 32 years old and was on lovastatin for a month and a half. I went through four days of horrible muscle weakness and pain. The weakness got a little better after a week but its been two months now that I have been off lovastatin and I am still having muscle weakness and some sharp pains that run down my legs and in my arms. High cholesterol runs in my family and I have it. I am very skinny, only weigh 110 lbs. I lost about 20 lbs just so I could lower my cholesterol but it only lowered it to 230. I am going to try cardio workouts to lower it when ever my muscles heal from this! I am so weak and that awful lovastatin has stopped me from doing any excersize. I really don't think 230 is that bad. The doctor wants me to go back on the statin even after these bad side effects! I will never take it again! I just hope this muscle weakness goes away soon. Its made my quality of life suck right now.
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Reply for "redheadedmary"

Postby sos_group_owner » Tue Dec 19, 2006 2:37 am

Hi "redheadedmary" & Welcome to the Forum,

First of all, if you are female (just taking a wild guess), it's not been proven that lowering a woman's cholesterol provides any benefit (aka longevity).
Please read Dr Graveline's article: "Women and Statins" http://www.spacedoc.net/women_statins.htm

Has your doctor checked your thyroid? Hypothyroidism is one of the most common causes of elevated cholesterol and only about 1/2 of those with the condition are diagnosed properly.

Has your doctor ordered a CK or CPK blood test to check for muscle damage?

If you are still experiencing muscle pain, I strongly advise that you do not attempt strenuous workouts. When muscles are adversely affected by statins, it can take months to recover.

Are you taking CoQ10 and/or some form of carnitine?

What are your cholesterol readings?
LDL
HDL
Triglycerides

Fran
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Postby redheadedmary » Tue Dec 19, 2006 12:42 pm

Thanks for answering back. My readings are
Triglycerides 52
HDL 59
LDL 161
Total 230
I am taking both of those supplements too the L carnitine and the coq10. They really seem to help. I have Thyroid disease. I had an underactive thyroid but my dose has been regulated for a long time now. I am female too. My doctor did not order the CK or CPK blood test, I am not sure what those are anyway. She wanted me to start taking the lovastatin again. When I try to get help from the other doctors that I see they all want me to go back to the perscribing doctor. I thought my cholesterol readings were ok anyway because I lost about 20 lbs. My total used to be in the 260's. Do you happen to know just how much per day to take of the L carnitine and the coq10? I am so happy that I found this website!
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Dosage

Postby Ray Holder » Tue Dec 19, 2006 3:52 pm

I would suggest at least 200 mg of Q10 a day,(I need 600, but statins affected my heart) and L carnitine something like 1000 mg a day. Carnitine needs to be built up fairly gradually or loose bowel problems can arise. 1000 mg will probably be OK as a starter, and after a few days move up by 250 or 500 mg a day, continuing the process until either you get sufficient relief, or your bowels object, and drop by 250 mg which will probably be a suitable regular dose. I think 3000mg a day is where problems usually start. At my age I have a very large dose, 6 grams a day, but that is rather unusual.

Ray(see other posting)
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Reply for "redheadedmary"

Postby sos_group_owner » Thu Dec 21, 2006 12:37 am

Hi "redheadedmary",

Re: Triglycerides 52, HDL 59, LDL 161
Your trig's and HDL are excellent!
It's not just LDL cholesterol that is bad, it's when LDL becomes oxidized.

Things that create "free radicals" and oxidized LDL... Smoking, high blood sugar levels (diabetes), stress... Risk factors that damage the "endothelium" include elevated levels of homocysteine, blood sugar, insulin, cortisol (stress hormones), triglycerides, smoking and deficiency in some vitamins, such as C and the B's.

When you get a chance, read the complete article titled, "Is Heart Disease All Due to Blood Clots?" by Dr Malcolm Kendrick:
[http://www.thincs.org/Malcolm.htm#clots]

Re: My doctor did not order the CK or CPK blood test, I am not sure what those are anyway.

CK (Creatine kinase) or CPK (Creatine phosphokinase) are enzymes found predominantly in the heart, brain, and skeletal muscle. When the total CPK level is substantially elevated, it usually indicates injury or stress to one or more of these areas.

CPK blood test is not foolproof, can come back negative but there is still muscle damage. A muscle biopsy would then be necessary to confirm muscle damage.

If your doctor refuses to order a CK or CPK blood test, look for a new doctor!

Fran
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Postby SomewhereNTexas » Wed May 30, 2007 8:06 am

hi! bet you thought I disappeared huh?

thought I would give you an update you wont believe.... oh wait ya you will believe it cuz you are here at this board...


In Late October my tricep tore - no it was more like a rip than a tear because I heard it pop -- I mentioned it here in this thread actually...

Despite physical therapy, my arm continued to get weaker not stronger - hmmmm wonder why ... (if you note a touch of cynical attitude you are correct) In fact as of right now I have no use of my arm anymore -- but let me continue ...

In January, I went for a MRI to determine why my arm was getting worse and not better. The technician there twisted my arm so hard that he managed to tear up the rest of my arm - of course thanks to lipitor it might not have needed that much to totally destroy my arm ...

after that fateful day, I could no longer lift my arm. More physical therapy - and then I could no longer move my arm. So somewhere along the lines I saw a surgeon to repair? my arm in a two and a half hour surgery. Well it's been several thousand dollars later, and I have to admit my range of motion is a little better - my arm can move some now, but not on its own - my arm muscles have zero strength. I go to physical therapy daily - but today am feeling totally frustrated and thats why I am here...

WE have to stop people from taking Lipitor! I totally believe that I would not be this way today if it had not been for that horrible drug!

The first month after my surgery my pain was so intense I wanted to die - so I totally understand why some people give up and die when they have serious injuries.

My real question is what doses do you guys think I should take to help my arm?? I took the standard doses given me here for several months, but havent taken any since my surgery 2 months ago and would like to start up again - I am wondering if there is anything special i should double up on to help my muscles wake up and work again...
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