you piqued my interest - is this what is wrong?

[SomewhereNTexas]

I must confess that I have only been taking lipitor for a little over a month now, but I have felt my life force leaving - for lack of a better way of putting it...

My cholesteral levels were high on my annual physical so my doctor put me on lipitor - bam end of discussion. I never tried a diet first or anything...

Last October I had a stress test and the doctor didnt see anything but the computer picked up a problem at 85%. My father also died at 48 from cerebral arterial sclerosis. I am 51. It seemed like lipitor was a good idea...

I started taking it about the time I went back to work teaching for the new school year. I noticed that I was really tired all the time, but figured it must have been just getting back into the routine. I also noticed that walking up the stairs to my bedroom was a real chore, but walking down the stairs was down right painful. It seems to be worse each day. I cannot remember ever being so tired all the time - last weekend i slept more than I was awake.

About 2 weeks ago - I began to have thoughts of dying. Not suicidal. just the idea that my body is worn out and my time is near. This has really alarmed me because I am still young and have no intention of giving up so easily. These thoughts continually pass through my mind now.


For about a week I have been having pain in my chest and shoulder and serious indigestion. Constipation has become a problem as well. In class the other day I couldnt focus on what I was saying to the class and found myself saying all kinds of weird things out of the blue. i noticed that when I type lately words are frequently jumbled and my brain feels mushy when I try to compose things - like now... this post has been extremely difficult for me to type and to formulate in a manner you can understand.

Instinctively, I knew that it just might be the lipitor and came online to see what i could find out about it. I stopped taking it 2 days ago, but I see that maybe that isnt a good idea that I should have cut back gradually. The nurse at work told me that my symptoms sounded to her like menopause...

I would like your input - should i take one tonight and try to cut back slowly? Should I consult my doctor first?

also please tell me what I should be taking instead of the lipitor because I have read all kinds of conflicting stories....

[sos_group_owner]

Hi SomewhereNTexas & Welcome to the Forum,

All the symptoms you describe are the typical adverse effects to statins.
Since you are female, there is no evidence (clinical data) that says taking statins will prolong your (or any female's) life (longevity).

Tapering off statins is best, as statins are a potent anti-inflammatory.
The fact that statins also lower cholesterol is "Irrelevant".
Dr Graveline's article "Stopping Statins:"
http://www.spacedoc.net/stopping_statins.html
Short version, cut the pills in 1/2.
wk 1 - take that 1/2 pill every day
wk 2 - take that 1/2 pill every other day
wk 3 - take that 1/2 pill every 3rd day

Since statins are anti-inflammatory, that's the objective... prevent inflammation (or better stated prevent oxidized LDL)

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
Also smoking & deficiency in some vitamins, such as C and the B's.

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

In addition to controlling the factors above, start Dr Graveline's
Statin Alternatives:
http://www.spacedoc.net/statin_alternatives.htm

Buffered Aspirin - 81 mg (contains beneficial magnesium)
CoQ10 - 100 to 150 mg (gelcaps - NOT powdered) with some Vit E
* Folic Acid - 400-800 mcg
* B6 - 80-100mg
* B12 - 200-250mcg
* (all 3 of these B Vitamins control Homocysteine)
Omega 3 (Fish Oil or Cod Liver Oil) - There is no upper limit

Dr Graveline's Statin Alternatives reduce and prevent inflammation, are anti-oxidants, reduce platelet stickiness, control (toxic) homocysteine and have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects.

"Statin Alternatives" are NOT intended to reduce cholesterol levels because total cholesterol is not the problem, it's inflammation.

Fran

[SomewhereNTexas]

thanks for your speedy reply --
i already take a baby aspirin twice a day

and will buy the suppliments tomorrow if I can find some in town -- we dont have health food stores here - do you think I can find them at walmart? :wink:

should i take a whole pill tonight or a half since i went 2 days without one at all?


my stress level is really high right now and only compounded by this feeling of living in a void the past few weeks... tonight I feel like a i have a fish bowl on my head ~ it is very bizzare ~ I cant imagine going through life this way !!!

I am supposed to go see the dr this week for a blood test and to discuss the progress - i hope he doesnt get too mad at me when I tell him i am cutting the lipitor out of the picture!

[Darrell]

In the grand scheme of things, your doctor getting mad is quite irrelevant. Your doctor can get over it or be replaced.

[sos_group_owner]

Hi "SomewhereNTexas",

Do you think I can find them at walmart?
Yes, Walmart carries CoQ10 from 50 mg up to 300 mg. They also carry fish oil and cod liver oil (CLO). I prefer CLO. Keep fish oils in the frig. If you don't want to hastle with taking folic acid, B6 & B12 separately, choose a B complex that contains the doses I mentioned.

"Should i take a whole pill tonight or a half since i went 2 days without one at all?"
No, just take a 1/2 for 1 wk, etc. as I mentioned in my 1st reply.

"My stress level is really high right now..."
I understand how you are feeling. I had many sleepless nights trying to make decisions about my husband's health, from stopping statins to what do I do next? Dr's were no support at all. Dr Graveline was a Godsend, plus lots of research.

"I am supposed to go see the dr this week for a blood test..."
We've all been through this and you need to be firm. This is the true test to see if your doctor is willing to work with you or you need to find a new one.

Make a list of all the side effects you are experiencing. Also write down anything you wish to discuss with your doctor. If you doctor is really concerned about your health, request a CK or CPK blood test that checks for muscles damage from statins. Also request a homocysteine blood test.

Do you remember your triglycerides levels from your last blood tests?

Fran

[Darrell]

As for that CK or CPK test, a "positive" proves muscle damage, but a "negative" does not rule it out.
(url)http://www.annals.org/cgi/content/abstract/137/7/581

[sos_group_owner]

[quote="Darrell"]As for that CK or CPK test, a "positive" proves muscle damage, but a "negative" does not rule it out.
(url)http://www.annals.org/cgi/content/abstract/137/7/581[/quote]

Good point Darrell,

If negative, a muscle biopsy would be needed to prove muscle damage.

Fran

[Ray Holder]

I think, before going for an uncomfortable test like a muscle biopsy, you should try to get a carnitine deficiency blood test. The biopsy can only show up damage, but the carnitine deficiency would show a definite need for supplementary carnitine to repair this damage and the medic could more easily be persuaded that this is needed.

I know that sometimes it may not show up in a test, but in W Australia they have found this deficiency in hundreds of post polios who have a similar shortage from a different basic cause.

Ray

[bunnylady]

You obviously need to be on the ball for your job- I could NEVER EVER have worked while recovering from this- I would get up in the morning- have a protein shake- work for a while as best I could then return to bed every day until about 4 p.m.- I usually felt my best late at night so stayed up late and slept late for 3 months- my new doctor put me on prednisone and I felt like my old self in 24 hours- use the supplements to restore your body and think about taking predinosone while your body recoveries- no more aches and pains- its wonderful!

[SomewhereNTexas]

i thought I would give you an update on things --

i have basically stopped the lipitor already ~ i hope it isnt too soon but i was down to 5 mg a day and after a few days at that doseage i just didnt take it again

I also started the suppliments you suggested ~ already I feel better and the fog is lifting. I still have trouble forming ideas, but it has been less than a week on the new stuff.... the muscle aches and pains are still there and I can not pretend they are any better... but i did not have any trouble getting upstairs last night and that is a first for me in weeks!!!

I told the doctor that I was taking myself off of the lipitor because it didnt like my body. I started to tell him all my symptoms but he stopped me. His response was pretty neutral. He said he wanted to see my test results before he would comment about it. I was supposed to call him on Friday, but I just forgot until it was too late in the day for that! :S I am not sure which tests he ran other than the routine to look at liver function, but i did mention checking for muscle damage. He didnt respond at all to that request....

I talked to a teacher at work the other day who just had surgery on her head ~ I honestly do not know what kind of surgery or why she had it, but the scar is very apparent and she was telling me about fatigue and having trouble coming back to teaching already. I told her I was also suffering from fatigue and told her I was trying to wean myself from lipitor. This is when she told me her horror story about lipitor and the muscle damage it did for her and she says she blames her recent problems on having taken lipitor in the first place! :shock: I just dont understand why the general public does not hear about all of these bad things....

[Ray Holder]

I feel that you will not get any real relief for your muscle problems until you take some carnitine, I would have preferred that you had a carnitine level test first, but your doctor sounds a bit unhelpful. the longer you struggle on with a carnitine deficiency, the more damage you will be doing to your muscles.

Failure of the body's carnitine production system often seems permanent, and unlikely to recuperate, I believe I am totally dependent on the supplement, any extra exertion, or failure to take sufficient, results in virtually complete failure of my back muscles and I cannot hold myself upright without holding on to the furniture on both sides.

Ray

[SomewhereNTexas]

ok tests are in -- lpl is down to 90 and liver shows ok -- but he wants to do another cpk -- dont know what you think, but i think it means it wasnt too hot a result

what suppliments should i take for that???????? might as well get a jump on it.....

[Ray Holder]

Some L Carnitine will most probably bring your CK down to normal in 2 or 3 hours. Without carnitine, my CK runs at about 500, as against 200 with it, due to statin damage.

In hospital 18 months ago, I had been without carnitine for a week, and CK was 500. I restarted carnitine at 6.30 am and a CK test was taken mid morning, result 200, so it works very quickly.

Start with 2x250 mg first thing in the morning for 3 days, and then raise to 4 a day, you will find several posts about it by Darrell and myself. Tell your doctor that you have Secondary Carnitine deficiency due to statin use if he questions the fact, but I doubt if he will have heard of it.

Ray

[SomewhereNTexas]

well i was surprised that he would want to do another test ~ i actually think he believes me .... He didnt seem too surprised to find out that this was happening to me :? He was surprised that my liver was not the reason I was tired all the time -
- I think he must have experienced these things with other patients as well

is L Carnitine something I can buy at Walmart? or will I have to drive to town this weekend?

[Ray Holder]

I am in UK, but others have said that it is available at Walmart.

Ray

[sos_group_owner]

Hi SomewhereNTexas,

Yes, Walmart does have Rexall brand L-Carnitine 500 mg in caplet form, 30 per container. I order NOW Foods brand from "TheCatalog.com"... 500 mg - 180 capsules for $30.

Fran

[SomewhereNTexas]

I feel so much better today than I did a couple weeks ago!!! I still hurt everywhere, but the fog is totally gone.

Monday I find out the results of the last string of tests. I have not started the carnitine because we didnt have it here in town, but I ordered some...


My feet and legs have been retaining a lot of fluid. (was this another lipitor biproduct???) It is so bad that people are commenting on it and they don't fit in shoes by the time it is afternoon. the dr gave me lasix for this, but to be totally honest I don't trust drugs anymore and am afraid to take it. The only prescribed drug I am still taking is my avalide for my blood pressure - and that is because I dont want to have a stroke or something... PLUS Avalide has a diaretic in it already....

[Darrell]

Get yourself some medical-grade, 15-20 mm Hg, support stockings, thigh-high if necessary. You're going to need them for awhile. They'll compress your legs and feet and minimize the blood pooling and resulting aches. [http://www.cvs.com] or [http://www.ameswalker.com]

[SomewhereNTexas]

well i chatted with my dr today about my results...

i have decided he is not very smart about some things :shock:

he says that my cpk came back within normal limits and he has no answers for why I have these pains and muscle weakness. He asked me what tests I would like him to do next -- I wasnt sure if he was being facetious or serious.

I told him I was taking suppliments and about the l carnitine to which he said that is a good idea why not try taking some centrum or something too.

he suggested i see if it gets better or worse or stays the same and if there is no improvement soon to come back and he will do more tests - but that i had a complete physical in August and it appears to him there is no cause for it....

as for the swelling in my legs and feet - he said it could be venus stasis but to take the diaretics and wear support hose and hope it goes away...

ok so I am really frustrated now. I suppose I should find a new doctor but I dont know where to start. this is supposed to be the best one in town - so if that is the case I am in trouble. Should I maybe try to get a cardiologist referal?

btw i took the first carnitine today and am waiting for the magic feel better to happen ;)

[sos_group_owner]

Hi SomewhereNTexas,

Re: I suppose I should find a new doctor but I dont know where to start.

Many of us are trying "Naturopathic Physicians". If you currently go to a Chiropractor, they are usually a good source to refer you to a Naturopathic Physician. There are some traditional doctors that specialize in naturopathic medicine.

You can locate a Naturopathic Physician in your area at this site:
[url]http://www.naturopathic.org/[/url]

Fran