Re: Cholesterol lowering drugs

[Guest guest]

Sunny,

Here is a link to a full-length article on statins and myopathy

written by a well-known expert in the field.

http://www.medscape.com/viewarticle/444385_print

Lipid-lowering Agents and Myopathy

L. Wortmann, MD

>

> All thoughts on this question will be very welcome. I would

really

> appreciate anyone's experience with cholesterol lowering drugs. My

> cardiologist thinks it is time I take something for that, but he

is not

> aware of the best one for mito patients. The doctor that treats me

for

> mito is in the same office, and I am sure the cardiologist will be

open

> minded in discussing the options with me. I think I remember some

> posts about it here, that some are not good for us mito people

because

> of the effect on muscles, and muscle weakness is one of my major

major

> problems. I think someone even posted what his/her mito doc

> recommended. I thought I saved those posts, but can't find them

now.

> I will check to see if Dr. Cohen made a recommendation in

Pittsburgh

> too. At the time there was so much information given that I could

just

> not keep track of it all.

>

> I would really appreciate any information that people might have.

>

> Regards,

>

> Sunny

[Guest guest]

When people speak of " high cholesterol " I'm assuming they usually mean high

TOTAL cholesterol, or maybe even more specifically " bad " LDL cholesterol.

And there's also " good " HDL which is expected to be high enough, or at least

not too low. Is this assumption about what people mean by " high cholesterol "

accurate in this group?

Furthermore, my understanding is that this condition, as I've just

described, is also the well-known widespread problem in " normal " people. And

that there is vast research and many theories but that this seems to be

driven by inheritance to SOME degree and also especially due to diet

(particularly high fats). In " normal " people, at least, statins help this

condition. Do I have all THIS right?

There's also a DIFFERENT but related condition (which I have) which has

normal i.e. high-enough HDL, " oddly low " (or at least, normal or only a

little high) LDL, and especially high (sometimes, sky-high) triglycerides

(this latter is another, lesser mentioned, component of the entire range of

cholesterols). My understanding is that very high levels of this latter

(which BTW is also just " fatty acids " ) is an indication either that:

a) digested fat, " broken down " somewhat into fatty acids, is in the blood

but not getting utilized as it normally would, neither being " burned " in the

mitochondria of muscle cells, nor stored in adipose tissue ( " body fat " ) as

would normally occur when hormones (I simplify) signal that this should be

done because the muscles don't need the energy now, OR

that adipose tissue is signaled (mistakenly or not) to release said fatty

acids into the blood, because the muscles need the energy now (whether they

really do or not), and then it's not getting burned by muscle.

Whatever the cause, I understand that niacin (OTC but should be monitored by

doc) is very effective for this particular condition. Anyone have feedback

or experience on this usage? An example article is at

http://www.riversidecardiology.com/archive/07151999.htm. LOTS more info at

http://www.intmed.mcw.edu/gimcme/lipids/.

To go on, I have extreme exercise intolerance, as I gather most mito

sufferers have. For MY condition at least (MSL), there's a mystery about why

the above (very high blood level of fatty acids) is happening despite my

muscles obviously NEEDING energy. Looks like the signaling might be working,

but my mitochondria can't handle the fatty acids, so they " back up " . Hence I

favor the " b " explanation.

Regarding my giant lipomas, I suppose it's possible that they simply

represent adipose tissue run amuck somehow. But unlike " normal " lipomas,

which are ordinarily dispersed around the whole body, are frequently right

on the " surface " (just under the skin), and are " encapsulated " , the lipomas

of MSL are usually just in the upper back, shoulders, back of the neck, and

lower back of the scalp (i.e. the region of the big major skeletal muscles),

and they are very deep. Furthermore they are un-encapsulated, much

interspersed in amongst the muscle (think: very fatty pastrami), and

therefore a real challenge to safely excise.

I'm inclined towards an alternate explanation, namely that the lipomas are

actually muscle cells, or I should say, WERE muscle cells. I think that my

muscle cells DO take fatty acids INTO their mitochondria, but that for one

of many reasons, the " burned " remains of the fatty acids aren't transported

OUT of the mitochondria. This leads to damaged mitochondria, which

eventually overwhelm and kill the muscle cell. And a local accumulation of

such blasted cell debris, mostly fatty acid components, comprises each of my

mysterious lipomas.

I could go on with my various sub-theories about exactly WHY this occurs,

but I'll shut up for now. :-) Anyway, I've been running this theory around,

with some molecular biologists, and getting at least some favorable

interest. And I'm TRYING to interest (or at least communicate with) a couple

of mito-specialist neuro docs. I bring all this up, of course, because at

least some of it might resonate with the conditions and experiences in other

types of mito. Any comments?

Regards

Steve D.

> Date: Fri, 29 Oct 2004 12:35:47 -0400

> From: z39z@...

> Subject: Cholesterol lowering drugs

>

>

> All thoughts on this question will be very welcome. I would really

> appreciate anyone's experience with cholesterol lowering drugs. [...]

>

> Sunny

[Guest guest]

Hi, Steve,

My question about cholesterol lowering drugs, specifically the statins

and those that act like statins, is due to the fact that I have some

atherosclerosis showing up on my physical tests. My father died at 63,

extremely physically and mentally deteriorated, and diagnoses with

" advanced atherosclorosis " . That was 35 years ago, when they weren't

even measuring cholesterol. My cardiologist feels I should be cautious

in this area, and I have no knowledge if cholesterol levels are at all

related to any mito dysfunction. I don't think they have even

speculated a relationship there. But, my LDL is on the high side, and

that is the indicator that the cardiologist is concerned about. My

total and HDL are reasonable. I am concerned that I take the right

drug, (if any) because of the muscle involvement.

I don't know about the other information you posted, but it certainly

is interesting. My guess is that many many " diseaases " will be

understood ultimately as a type of chemical/metabolic disfunction, and

certainly mitochondria are a big player in that. I wish we knew more

now, but it is interesting medical times that we are living in. A

short time ago fewer theories and diagnoses (or none) were available

to us, except the old standbys of stress, mental, or other attacks on

our personalities.

Keep on theorizing and talking to people, Steve. I think it is so

important that we continue to raise awareness in the area of mito

disfunction, and other problems that are difficult to diagnose. Times

will change, and we will have contributed to the change in a positive

way.

Thanks for your input

Take care

Sunny

[Guest guest]

Barbara

Thank you for that article. For some reason I could not get into it on

my computer, but have asked my husband to print it up for me on his at

work. Should get it today, hopefully.

I find so much good information on this site, and you are a great

contributor, Barbara. Thank you.

Regards and take care

Sunny

>

> Sunny,

>

> Here is a link to a full-length article on statins and myopathy

> written by a well-known expert in the field.

>

> http://www.medscape.com/viewarticle/444385_print

> Lipid-lowering Agents and Myopathy

> L. Wortmann, MD

>

>

>

>

> >

> > All thoughts on this question will be very welcome.   I would

> really

> > appreciate anyone's experience with cholesterol lowering drugs. My

> > cardiologist thinks it is time I take something for that, but he

> is not

> > aware of the best one for mito patients. The doctor that treats me

> for

> > mito is in the same office, and I am sure the cardiologist will be

> open

> > minded in discussing the options with me.  I think I remember some

> > posts about it here, that some are not good for us mito people

> because

> > of the effect on muscles, and muscle weakness is one of my major

> major

> > problems.  I think someone even posted what his/her mito doc

> > recommended.  I thought I saved those posts, but can't find them

> now.  

> > I will check to see if Dr. Cohen made a recommendation in

> Pittsburgh

> > too. At the time there was so much information given that I could

> just

> > not keep track of it all.

> >

> > I would really appreciate any information that people might have.

> >

> > Regards,

> >

> > Sunny

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>

>

>

[Guest guest]

Tks, Sunny. It may be that you have to register to access medscape,

though it is free. I sometimes forget about that. If your husband

can't get it, I can paste into email for you.

B

> > >

> > > All thoughts on this question will be very welcome.   I would

> > really

> > > appreciate anyone's experience with cholesterol lowering

drugs. My

> > > cardiologist thinks it is time I take something for that, but

he

> > is not

> > > aware of the best one for mito patients. The doctor that

treats me

> > for

> > > mito is in the same office, and I am sure the cardiologist

will be

> > open

> > > minded in discussing the options with me.  I think I remember

some

> > > posts about it here, that some are not good for us mito people

> > because

> > > of the effect on muscles, and muscle weakness is one of my

major

> > major

> > > problems.  I think someone even posted what his/her mito doc

> > > recommended.  I thought I saved those posts, but can't find

them

> > now.  

> > > I will check to see if Dr. Cohen made a recommendation in

> > Pittsburgh

> > > too. At the time there was so much information given that I

could

> > just

> > > not keep track of it all.

> > >

> > > I would really appreciate any information that people might

have.

> > >

> > > Regards,

> > >

> > > Sunny

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained

> > herein are not necessarily those of the list moderators. The

author of

> > this e mail is entirely responsible for its content. List

members are

> > reminded of their responsibility to evaluate the content of the

> > postings and consult with their physicians regarding changes in

their

> > own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends

> > one is automatically moderated or removed depending on the

severity of

> > the attack.

> >

> >

> >

> >

> >

> >

[Guest guest]

Steve

My mother and I have had the high triclycerides. They gave her a med

specifically designed to lower triclycerides that is not a statin. I wonder

if that is an option for you.

I saw my neuro yesterday and we talked about my lipomas, as some are causing

pain. He said that in mito, usually the type of lipomas are near the surface

and may be in clusters. I have a cluster of pea sizes lipomas on the side of

my elbow. He said that chlosterol can be a signal that the matabolism of fat

is not working properly. He also said that they can get imflammed,

especially where clothes rubs (like at the waist line) or movement at a

joint.

As I understand it, there can be defects in the mechanism of the fatty acids

getting into the mitochondria, so there may be high levels in the blood.

Were your cholesterol and tricylcerides checked first thing in the morning

before eating or drinking. These are much more accurate than those taken

sometime through the day.

laurie

>

> Reply-To:

> Date: Sat, 30 Oct 2004 04:07:15 -0400

> To: >

> Subject: Re: Cholesterol lowering drugs

>

>

> When people speak of " high cholesterol " I'm assuming they usually mean high

> TOTAL cholesterol, or maybe even more specifically " bad " LDL cholesterol.

> And there's also " good " HDL which is expected to be high enough, or at least

> not too low. Is this assumption about what people mean by " high cholesterol "

> accurate in this group?

>

> Furthermore, my understanding is that this condition, as I've just

> described, is also the well-known widespread problem in " normal " people. And

> that there is vast research and many theories but that this seems to be

> driven by inheritance to SOME degree and also especially due to diet

> (particularly high fats). In " normal " people, at least, statins help this

> condition. Do I have all THIS right?

>

> There's also a DIFFERENT but related condition (which I have) which has

> normal i.e. high-enough HDL, " oddly low " (or at least, normal or only a

> little high) LDL, and especially high (sometimes, sky-high) triglycerides

> (this latter is another, lesser mentioned, component of the entire range of

> cholesterols). My understanding is that very high levels of this latter

> (which BTW is also just " fatty acids " ) is an indication either that:

>

> a) digested fat, " broken down " somewhat into fatty acids, is in the blood

> but not getting utilized as it normally would, neither being " burned " in the

> mitochondria of muscle cells, nor stored in adipose tissue ( " body fat " ) as

> would normally occur when hormones (I simplify) signal that this should be

> done because the muscles don't need the energy now, OR

>

> that adipose tissue is signaled (mistakenly or not) to release said fatty

> acids into the blood, because the muscles need the energy now (whether they

> really do or not), and then it's not getting burned by muscle.

>

> Whatever the cause, I understand that niacin (OTC but should be monitored by

> doc) is very effective for this particular condition. Anyone have feedback

> or experience on this usage? An example article is at

> http://www.riversidecardiology.com/archive/07151999.htm. LOTS more info at

> http://www.intmed.mcw.edu/gimcme/lipids/.

>

> To go on, I have extreme exercise intolerance, as I gather most mito

> sufferers have. For MY condition at least (MSL), there's a mystery about why

> the above (very high blood level of fatty acids) is happening despite my

> muscles obviously NEEDING energy. Looks like the signaling might be working,

> but my mitochondria can't handle the fatty acids, so they " back up " . Hence I

> favor the " b " explanation.

>

> Regarding my giant lipomas, I suppose it's possible that they simply

> represent adipose tissue run amuck somehow. But unlike " normal " lipomas,

> which are ordinarily dispersed around the whole body, are frequently right

> on the " surface " (just under the skin), and are " encapsulated " , the lipomas

> of MSL are usually just in the upper back, shoulders, back of the neck, and

> lower back of the scalp (i.e. the region of the big major skeletal muscles),

> and they are very deep. Furthermore they are un-encapsulated, much

> interspersed in amongst the muscle (think: very fatty pastrami), and

> therefore a real challenge to safely excise.

>

> I'm inclined towards an alternate explanation, namely that the lipomas are

> actually muscle cells, or I should say, WERE muscle cells. I think that my

> muscle cells DO take fatty acids INTO their mitochondria, but that for one

> of many reasons, the " burned " remains of the fatty acids aren't transported

> OUT of the mitochondria. This leads to damaged mitochondria, which

> eventually overwhelm and kill the muscle cell. And a local accumulation of

> such blasted cell debris, mostly fatty acid components, comprises each of my

> mysterious lipomas.

>

> I could go on with my various sub-theories about exactly WHY this occurs,

> but I'll shut up for now. :-) Anyway, I've been running this theory around,

> with some molecular biologists, and getting at least some favorable

> interest. And I'm TRYING to interest (or at least communicate with) a couple

> of mito-specialist neuro docs. I bring all this up, of course, because at

> least some of it might resonate with the conditions and experiences in other

> types of mito. Any comments?

>

> Regards

> Steve D.

>

>> Date: Fri, 29 Oct 2004 12:35:47 -0400

>> From: z39z@...

>> Subject: Cholesterol lowering drugs

>>

>>

>> All thoughts on this question will be very welcome. I would really

>> appreciate anyone's experience with cholesterol lowering drugs. [...]

>>

>> Sunny

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Eating chicken and fish, especially large amounts, can be bad for

your cholesterol. It's not a magic bullet for lowering cholesterol -

a lean red meat would be better than dark meat chicken with the skin

on.

Maybe this site will give you some ideas:

http://www.medicinenet.com/script/main/art.asp?articlekey=22751

I think you might want to look at raising your HDL, then you'd be

okay even with that cholesterol level. The triglycerides are a bit

high - do you eat a lot of carbohydrates, especially white flour and

sugar? You could try to stick with whole wheat breads and pastas.

You might want to try a fish oil supplement (Coromega isn't bad, my

kids take it), or my favorite, buy whole flax seed, grind it in a

coffee grinder, and have 2 tsp. on your ice cream every night. That

really decreases the cholesterol, or at least it has for my family

and friends. (it has the good omega-3 fatty acids in it).

Remember, I'm not a doctor, etc. - but that's been my experience.

I'm on the Atkins diet now, which has given me health benefits, but

my cholesterol is up to 250. Good news is that my HDL is above 40.

I have a theory that higher cholesterol might help some mito patients

(like me), as the Coenzyme Q10 made by the body ends up coming from

cholesterol.

Here is an interesting but technical review that mentions why CoQ10

may be decreased by some cholesterol-lowering drugs:

http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=475&tab=HC

Take care,

RH

> >

> >

> > > heres my, lipid panel,

> > > triglycerides 340,

> > > cholesterol, total 283

> > > HDL 38

> > > LDL 177

> > > chol/hdlc ratio 7.4

> > > (no wonder my plumbing is shot.)

> > >

> > > diet will not bring it down, I have eaten so much

> > > chicken, when a cough, I bring up feathers, as for

> > > fish, I think I am developing gills!