[email hidden] wrote in message news:<[email hidden]>...
Quoted message said:On Wed, 09 Jun 2004 00:52:21 -0400, "Dr. Andrew B. Chung,
MD/PhD said:Zee said:
I received this today. I have never met the speaker,
but know of the academic reputation. I have edited this
to remove identifying remarks, and would appreciate
your remarks about what I can suggest for recovery, if
anything.
Zee
"I was on Pravachol for almost a year ending fall 2001,
having had an angioplasty at age 54. Strong history of
heart disease in the family was certainly a risk
factor.
Before my angioplasty I went on pravachol (cant
remember the dosage)and 11 months later I had great
difficulty walking and was using a cane. My then family
doctor thought it was arthritis as did I and sent me to
a rheumatologist. I was associated with three
cardiologists at the time, none of whom related my
muscle/joint problems with the statin.
I was in a cardiac rehab program and could complete the
exercises but was so tired afterwards that I would go
home and sleep for two hours. Since I have asthma the
exercise fatigue was attributed to the asthma. I was in
a mental fog as well.
My angioplasty was at XX hospital and I was in a follow-
up program there. In late 2001 I was seeing the doctor
before going to (foreign country) for four months and
told him I wanted to reduce my meds. I explained that I
had always had low cholesterol and did not know why I
was on pravachol and I also had some questions about my
unrelenting fatigue and my asthma meds.
He referred me to pharmacist associated with their
program. (Pharmacist) told me the statins could be
causing my muscle/joint problems and the cardiologist
in charge told me I could safely stop taking them.
Two weeks later I went back to the rheumatologist and
was able to walk without a cane. The rheumatologist had
previously suggested that I might have fibromyalgia.
No one seems to have taken any liver enzyme tests and
so I have no way of knowing base lines or what liver
damage may have been done.
One other cardiologist told me to stay on the statins.
My LDL was extremely low.
In addition to extreme fatigue and weakness,
hypoglycemia, which made it very hard to do the cardiac
exercise, I have learned that my mitochondrial
functions were extremely depressed.
I have memory problems and concentration problems and
constant sinus problems. My career as a university
professor and researcher is just about over.
I had an episode recently in which I believe I had a
small stroke. An MRI revealed small frontal lobe
lesions. The neurologist thinks I did not have a TIA,
but (other doctor) thinks the neurologist is wrong.
I am taking co-enzyme Q10 and vitamin E and am seeing
an acupuncturist.
I should say that my new cardiologist wants to put me
on statins, plavix, and an ACE inhibitor. I have
refused all of these. I tried his suggestion of upping
my aspirin dosage from 81 mg a day to 325 every other
day. After two weeks of nose bleeds I stopped the
aspirin and amtaking one a week under (doctor's)
supervision.
A friend of mine with heart disease tells me that
cardiologists devoted to statins are called lipid
fascists.
Have you heard this term?"
Truth be told, it does not sound like your pen-pal is
interested in treatment options, Zee.
Servant to the humblest person in the universe,
Andrew
I agree.
Besides, this is a very odd letter.
The writer seems medically knowledgeable (mentions
mitochondrial functions, frontal lobe lesions, liver test
base lines..) yet complains that "no one" (?) took liver
enzyme tests. After a certain age, and certainly with the
writer's history and issues, a yearly checkup with routine
blood chemistry (which usually includes AST & ALT) should
be the least he/she should do. Common sense.
It's also not clear to me that the writer's problems
originate from the statin. The writer seems to have a host
of other issues - asthma, hypoglycemia, possible
fibromyalgia, sinus problems, (not listening to his
doctor!)...
The "lipid fascists" remark helps neither the writer nor
doctors.
And finally there's Zee's disingenuous request. She wants
someone here to suggest to her options so that she can
suggest to the writer what the writer can do to ameliorate
the writer's problems. Or as she puts it "recovery".
But recovery from what?
L.
Listener and Andrew: I will try to answer your questions and
comments, last first:
I agree about the comment. It wasn't his except in asking me
ruefully, but something someone else said to him. I should
have taken it out. It certainly doesn't reflect my thinking
toward cardiologists in general or Andrew specifically.
Recovery from what: I think, from what I would call statin
syndrome. All these symptoms which the writer mentions I and
others with whom I correspond experienced and have not fully
revovered from, with the exception, in my case, of not
having heart disease, and with the inclusion of many other
symptoms and side effects which I did/do have and I won't
list, again.
The medical knowledge the writer has, was gained since
stopping statins, partly, but there is another reason I
won't divulge. Let me say that I'm no dummy, but when on
statins, I sure was. I forgot things I knew very very well,
not just facts, but ways of doing. So I can relate to this
person not protecting themselves as they likely knew. And as
you both know, some academics get lost in their own
specialty and don't know the most mundane things we all
think everyone would know!
But this person kept seeing doctors, kept asking for help,
and kept questioning. That they didn't think of everything,
is because of the statin, if they were like me. Why did the
doctors not do liver enzyme tests? Would liver enzyme tests
have made any difference. Dr. Paul Phillips of Scripps Mercy
says no, not always. Many cases of myopathy do not show in
liver enzyme tests.
That the many doctors this person was seeing didn't pick up
on and attribute the symptoms and side effects displayed is,
inconceivable to
me. It would not happen in June 2004, we hope. Right?
Wrong. I daily receive letters from people whose doctors
tell them, today, statins can't do that. They write me
asking. They get told eh?
!?!?
Just this week, we heard that one of our members suffered
muscle pain (and??) for almost six months, before, as the
said to me "I thought of Zee". Over and over people tell me--
I thought I was getting older, the doctor said it was
arthritis, the doctor said it was ???. Always, it is
mitigated on stopping the statin, as in Liam's case.
I would say this person is very interested in treatment
option: for statin syndrome. That is why he wrote to me. It
has taken weeks for me to pry this information out of him.
He feels so stupid, so embarrassed, so afraid of losing his
career. So disappointed at not being able to embark on a
course of research that was to cap this career.
I posted this here hoping, especially Andrew, to have you
say something that might help.
To say I am disappointed is an understatement. I know none
of us are perfect. But I place a lot of value in you here.
This person came to me. I came to you. There is, was nothing
disingenuous.
If I've missed something I'll try to answer civil responses.
Zee
