New member -

[Guest guest]

Hi , I'm so sorry about your daughter. Fortunately she was diagnosed

early. My grandson has Bruton's. He has done very well on IVIG therapy for 18

years.

He was about your daughters age when he was diagnosed. My son died in 1964 at

the age of three.....long before these conditions were recognized. I'm not

sure about all the categories of these conditions, but my daughter is very

well educated on the subject. It sounds like you have good medical support,

our prayers are with you in the decision making process. jackie

[Guest guest]

Hi everybody,

This is my first post to TakingLipitorAndHateIt and I'm

CC-ing it to cholesterol_management too.

I'm really frustrated with statins and the ONLY reason I don't flat out

refuse to take them, is because I haven't found anything else that

could do the job as well.

They started me on Zocor back in the late 90's and I took that for

awhile until the insurance companies started going to formularies, AKA

" we will only pay for cheap generic drugs and not for anything else " .

Then it was lovastatin, which was all I could afford after the

formularies hit.

I'm 57 now and have had lifelong weight and overeating problems and had

been a couch potato all my life because exercise bored me to tears, but

started studying martial arts in October 1998 and that really helped

because my first school ( kempo ) was a really good aerobic workout.

And learning martial arts makes exercise interesting. ( plus it has all

kinds of other benefits, not the least of which is that you learn how

to take care of yourself ) I was with that school until August 2003

when they kept raising their prices so high that I could no longer

afford them. ( they started at $100 a month and are now $185 a month,

or $250 without a contract. )

But in 1999, the summer after I started martial arts, they did a

routine EKG and found a problem. A catheter test discovered that I'd

had a " silent heart attack " , probably around 1995, and had a totally

blocked and calcified right coronary artery. BUT the good news was that

I had a co-dominant left one, and the exercise of the martial arts had

developed colateral flow to the heart around the blocked one.

So I'm on my second chance since then, only the schools I've been with

since then haven't had the exercise that the first one did.

So cholesterol control has been even more important since that news.

The problem was that I was always getting calf and toe cramps from the

zocor and lovastatin and some winter vertigo from it drying my ears out

too much. And an odd problem developed in recent years that the doctors

just shrug at. I sleep mostly on my side, and when I do, the hand

that's on top and hanging down on the bed, falls asleep. Then I have to

turn over to the other side and that top hand falls asleep. It's weird,

and I'm not sure if it has anything to do with the heart problem (

maybe not so good circulation? ) or the statins.

Come to think of it, I've also developed a skippy heart problem where

it skips a beat once in awhile and I feel sort of a " whoaa " sinking

feeling, but the cardiologist isn't sure what causes that. ( hope it's

not the statins )

Anyway, being I haven't found a school that offers what I need in

martial arts, I came up with a new concept ( below ) and am planning on

starting my own school soon.

But this is such a confusing mess with cholesterol control. I decided

to try to get off the statins last year and found out that the

lovastatin was helping to keep my weight down too. I've put on about 15

lbs since stopping it. ( combined with the crummy martial arts schools

I've been trying the last couple of years )

So I tried 2 grams of fish oil per day, as the doctor suggested ( I'd

been taking 1 before anyway ) and policosanol, which helped. I also

started adding Slo Niacin a few months ago, to see if that could help

too, but my last cholesterol test was still 249 total and 149 of that

was LDL. So the doctor wanted me to get back on a Rx drug too. She

says the total cholesterol should be <200 and my LDL was around 150 and

she said that should be 75 for someone with past heart problems.

So here I was taking policosanol, Slo Niacin ( 500 mg ) and fish oil,

and she gave me samples of Vytorin ( Zetia and Zocor combo ) to try. I

figured, why not add it to the rest, maybe it would REALLY help.

But the first night I tried that, I got sick as hell. A few hours later

I woke up and was all flushed red, with intense burning and itching all

over my skin. I was breathing hard and headed for the bathroom and got

diarrhea for awhile and then started sweating bullets, so much that it

was dripping all over the floor. At one point I was wondering if I'd

have to call 911 it was so bad, but then it went down and I showered

and went back to bed. But apparently it was the Zocor that interacted

very intensely with the Slo Niacin.

I cut out the niacin and was able to start taking the Vytorin again,

but got really bad vertigo and started feely spacy and scatter-brained,

like it was hard to think. ( still taking the policosanol though )

So I tried breaking the Vytorin in half and that cut down on it some,

but it still was a problem so I quit the Vytorin and asked the Dr. for

some plain old Zocor samples instead. Zocor is a lower tier formulary

drug now, so I can afford it more, and I heard that it's going generic

in October. But the Zocor was still causing some vertigo.

Then someone in my cholesterol yahoo group said that COQ10 can help

with the side effects of the Zocor, so I ordered some from ebay and

started taking 100mg with the zocor at night, which helped most of the

vertigo and took away the calf cramps.

But I was reading that folic acid, B6 and B12 can help arterial

problems, so I bought some supplements that had all those on Ebay and

started taking them, but the flushing intensified again for some reason

and it seems it was because I was still taking the policosanol with it

all. The policosanol seems to interact with the zocor to intensify

niacin flushing, even with the low amounts of niacin ( 100mg ) in the B

complex supplements or in daily multivitamins.

Jeez, this is all driving me nuts.

So I've been going round in circles with this. I'd love to just quit

the Zocor, in fact the people in the cholesterol group

cholesterol_management have been pointing to articles

about how bad zocor may be for us. Everything from myopathy to

neuropathy to cancer, and even something about some form of alzheimers.

But jeez, so much of what's on the web seems to be posted by the

" health food " supplement peddlers and they can be just as bad as the

drug companies, only in different ways. They post things saying that

anything that isn't a health food supplement causes cancer and all

manner of diseases, and of course if you buy snake oil from them it

will make you live forever.

It's all so confusing that I don't know what to believe anymore. My

doctor swears by RX drugs, and of course they would, being they're

courted by the drug companies, taken to lunch, given gifts, vacations

etc.

But I'm on what may be my last chance with stopping the arterial

blockage. Something like 30% of people die of a first heart attack and

I was lucky. I had a miracle of sorts. But I'm not sure if I'll get

another chance if it happens again. My uncle ( moms brother ) just

died of heart disease last week and my 82 year old mom is on her last

stretch because of it. She almost died last year and we don't hold out

much hope that she'll make it through this year.

Like I said, I'd REALLY love to dump the statins but HAVE to get my

cholesterol down without them. I'm also low income at present and can't

afford to just spend massive amounts of money on all kinds of

supplements. Thanks to the web and ebay though, I'm able to take the

alpha lipoic acid - acetyl L carnitine combo, the COQ10 now, the folic

acid B6 B12 combo and the policosanol. I guess if I quit taking the

zocor, I could go back to the Slo Niacin again too. Do you think that

all would help keep me well and get the cholesterol low enough without

the zocor?

Yours In Liberty, - Colorado, U.S.A.

Member Libertarian Party USA and LPCO

http://melissasliberty.blogspot.com/

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