e_j_anderson

I posted some thoughts maybe ten days ago on the first part of the tape -- which deals specifically with the diastolic cardiomyopathy. Here are some reactions on the next section.

There is an old parable about several blind men trying to describe an elephant. One feels the trunk, another feels the leg, one feels an ear, another feels the tusk, etc. They give wildly different descriptions of what an elephant is like because they haven't grasped the whole picture. Watching Cheney's new lecture is a little like that. He'll talk about cardiomyopathy and its ramifications, and then the slide switches to something about peroxynitrite, or exercise ergometry with gas ****ysis, and so on. These are all aspects of the CFS elephant, apparently, but it is hard to get a coherent picture of the relationship between these elements -- at least it is hard for me.

Although he started out talking about cardiomyopathy -- the type that is found in CFIDS and the evidence for it -- in the second part it seems to me he is talking about the pathology that underlies the heart dysfunction.

It boils down to mitochondria malfunction. This malfunction seems to cause an increase in the superoxide radical. Normally this radical is kept in check by SOD (which should be familiar to anyone reading my posts lately -- it is the most abundant antioxidant enzyme in the body, if I'm not mistaken) and another substance with which I am unfamiliar. When the SOD + ? system fails, then superoxide can get outside the cell and combine with nitric oxide to produce peroxynitrite, which is a very powerful very damagine free radical. Cheney feels that our cells are shutting down energy production, shutting down oxygen consumption, as much as possible in order to minimize superoxide release, because that is normally the rate limiter in the production of peroxynitrite.

When the mitochondria reduce their energy production, cardiomyopathy is one result. There are many other consequences. If this scenario is correct, I still think it might be difficult to say just how much each factor is responsible for the symptoms we suffer. Certainly the reduced microcirculation in capillaries -- a compensation for low cardiac output -- could cause many symptoms by itself. Is the mitochondrial dysfunction only in certain cells, or is it in every cell? If the latter, it could have wide ranging effects apart from the poor microcirculation.

Here is the point: Lance Armstrong can reach a peak cardiac output of 35 liters/minute. This is why he can do the amazing things he has done. I would also like to point out that it is probably why he survived a toxic chemothe****utic regimen for his cancer that permanently debilitates or kills other patients. Other athletes might get 25 liters/minute of output. A normal person, when standing, puts out 7 liters/minute, but when reclining, will put out 5 liters per minute.

But CFIDS patients have a cardiac output of 5 liters or less when standing. Some will put out much less. He had one patient with a cardiac output near 2 liters/per minute, which was less than Cheney had before his heart transplant. He could not figure out how this patient could stay alive.

Since cardiac output drops even lower when a patient stands (if he/she can stand up -- but most of us can, I think) the situation is much worse. It is very hard to keep adequate blood flowing to all the organs, the skin, the brain, under these cir***stances. Something has to suffer somewhere. Some body part always gets the blood supply cut off a little bit.

Less blood flowing to an area means less oxygen, less signalling molecules like hormones, less waste removal, and a host of bad things. With more cardiac output, that is to say with more blood flow to all areas, no doubt many of our symptoms would resolve or be mitigated just by that fact alone.

Since the root cause seems to be the mitochondria, that has to be part of the focus of treatment. And also, to improve the filling of the ventricle. There are some ways that we might accomplish each of these goals, but I will have to view and review a bit more before I understand what he is recommending in these areas.

Again -- I am trying to report and summarize what Cheney said. I may have got some things a bit wrong, and even if I report 100% accurately, that does not mean that everything Cheney said is correct. But with those caveats, this general outline seems to be how Cheney views CFS.


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writeplace

Thank you so much for posting this message. I have been waiting and watching
for your post ever since you posted your summary to part 1 of the video.
Will there be a Part III or is this all of it?

Michigan Jan
----- Original Message -----
From: <e_j_anderson@juno.com>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Wednesday, October 19, 2005 5:50 PM
Subject: MED: impressions of Cheney, part 2

e_j_anderson

watching
for your post ever since you posted your summary to part 1 of the video.
Will there be a Part III or is this all of it?

Michigan Jan<<

I have about an hour left of the lecture. I assume he is going to talk about treatment. I already know some of what he'll recommend -- water spiked with potassium chloride and sodium chloride to increase fluid volume -- which should help the "preload" to the heart ventricle. Part of the problem of low cardiac output is due to poor filling of the ventricle -- which is the main pump pushing blood out to the body's tissues. If the blood doesn't come in, it can't go out, no matter how good the ventricle function is. Increasing blood volume can help with this problem, but distilled water would not be as much help as water with potassium and sodium.

What else he'll recommend, we shall see. I hope to view the rest of the tape within the next week, and type up another report.

By the way, I made an error in my "part 2" report when I stated that CFS patients pump 5 liters of blood per minute standing up. No, that figure is for a reclining CFS patient. When standing, the output drops to about 4 or less. A normal person will go from 7 liters reclining to 5 liters standing up. The number itself is not so important. The important number is how much blood your tissues need, and that need varies under different cir***stances.

Eric


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richard

Over the last 12-18 months I feel my illness has got worse and I blame it on
a prolonged spell of stress which I was subjected to over a two year period
(finished over a year ago).

The most worrying sympton is a symptom of feeling 'yucky' and generally just
ill, rather than 'just' tired/exhausted. It's hard to explain other than I
just feel ill at ease and not right. It comes and goes.

I have been worried about this but wonder if I may have put my finger on the
cause. In the summary of the Dr Cheney video I note he talks about gut
problems leading to a feeling of being 'yucky', or toxic malaise. Of course
I doubt if I'll ever know for sure but wonder if this is indeed what is
happenning. I wonder if there is something else serious going wrong with me.
I asked my doctor for a medical last year and she just sent me for some
blood tests (diabetes etc.usual stuff like that) which showed up nothing
wrong, other than equivocal low thyroid and she has put me on thyroid
medication.

I just feel I have got worse in other ways too and sometimes wonder, lately,
if I am heading towards the 'event horizon' which Cheney talks of. I seem to
have an even lower threshold for being affecterd by stress, the effects are
longer lasting, and they're more severe. I am scared by all these new and
worsened symptoms.

One particular feature is a horrible kind of panic attack. The blood
absolutely rushes to my head and my heart pounds and my palms are sweaty.
Sleeping pills and compensatory caffeine seems to get me going seem to be
implicated. the attacks are more likely in the morning. Again, this only
happened for the first time (since CFS onset anyway) once this stressful
period in my life had been going for a year.

On another occasion lst winter I slept in someone else's cold house and woke
feeling totally poleaxed. I don't think I've ever felt so feeble and when I
went out into the grey cold day I felt like I would drop dead on the spot.
My hosts were worried and urged me to go for aforementioned tests. I now
suspect low thyroid activity and probably suppressed cortisol were
implicated.

I wonder how long it might take to recover from a relapse, if indeed this is
what it is. After a year I would surely have got over as much as I was going
to, wouldn't I? Maybe my cardiac output has permanently dropped? Maybe
it's partly a result of ageing (40 next year) and living with such a
draining condition for so long ?

Who knows?

Richard V

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bliss

RV> Over the last 12-18 months I feel my illness has got worse
RV> and I blame it on a prolonged spell of stress which I was
RV> subjected to over a two year period (finished over a year
RV> ago).
RV> The most worrying sympton is a symptom of feeling 'yucky' and
RV> generally just ill, rather than 'just' tired/exhausted. It's
RV> hard to explain other than I just feel ill at ease and not
RV> right. It comes and goes.

Yes well feeling 'yucky' is a regular feature.
RV> I have been worried about this but wonder if I may have put
RV> my finger on the cause. In the summary of the Dr Cheney video
RV> I note he talks about gut problems leading to a feeling of
RV> being 'yucky', or toxic malaise. Of course I doubt if I'll
RV> ever know for sure but wonder if this is indeed what is
RV> happenning. I wonder if there is something else serious going
RV> wrong with me. I asked my doctor for a medical last year and
RV> she just sent me for some blood tests (diabetes etc.usual
RV> stuff like that) which showed up nothing wrong, other than
RV> equivocal low thyroid and she has put me on thyroid
RV> medication.

What sort of medication for thyroid? I was on Synthroid
for several years with no alleviation of my symptoms. Finally
got on the thyroid newsgroup and got more information, eventually
got my then PCP to switch me to Thyroid, USP a natural product
derived from the thyroid glands of swine.
But in CFIDS the body is unable to convert the Synthroid
which is made up of the storage form of Thyroid(T4) to the
usable form (T3), Thyroid USP (aka Armour Thyroid) contains
all the versions of thyroid hormone produced naturally in the
body. It is rich in T3 form which helped me a lot,
RV> I just feel I have got worse in other ways too and sometimes
RV> wonder, lately, if I am heading towards the 'event horizon'
RV> which Cheney talks of. I seem to have an even lower threshold
RV> for being affecterd by stress, the effects are longer
RV> lasting, and they're more severe. I am scared by all these
RV> new and worsened symptoms.

Typical of CFIDS even when stress goes away the damage
it has done to us does not go away.
RV> One particular feature is a horrible kind of panic attack.
RV> The blood absolutely rushes to my head and my heart pounds
RV> and my palms are sweaty. Sleeping pills and compensatory
RV> caffeine seems to get me going seem to be implicated. the
RV> attacks are more likely in the morning. Again, this only
RV> happened for the first time (since CFS onset anyway) once
RV> this stressful period in my life had been going for a year.

Lay off the caffiene and sleeping pills. Stuff with
very low levels of caffiene may be ok like decafe coffee and
tea but caffiene at normal levels is almost always are problematic for CFIDS patients.

You don't mention the sleeping pills you are using so I
can only say that some of the most common drugs given are very
hard on cfids damaged bodies.
RV> On another occasion lst winter I slept in someone else's cold
RV> house and woke feeling totally poleaxed. I don't think I've
RV> ever felt so feeble and when I went out into the grey cold
RV> day I felt like I would drop dead on the spot. My hosts were
RV> worried and urged me to go for aforementioned tests. I now
RV> suspect low thyroid activity and probably suppressed cortisol
RV> were implicated.

Someone else's house may have all sort of problems that
a healthy person would not notice but mold and animal & human
dander and the mites that consume them are possibilities.
You might want to see an allergist who is aware of food
sensitivities.
If you have a typical gut problem you may need to
change your diet a good deal and give up common foods.
RV> I wonder how long it might take to recover from a relapse, if
RV> indeed this is what it is. After a year I would surely have
RV> got over as much as I was going to, wouldn't I? Maybe my
RV> cardiac output has permanently dropped? Maybe it's partly a
RV> result of ageing (40 next year) and living with such a
RV> draining condition for so long ?

If you were a wellp erson yes you would have recovered a
good deal by now but if you are a person with CFIDS/ME then
you are chronically ill and the cause may be hard to find
or untreatable.

How much exercise are you doing now?

What sort of regimen are you following in the light of
knowledge of your condition?
RV> Who knows?

Heavens know but they ain't talking.
RV> Richard V

later and good luck with your health.
Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

For further information, consult your pineal gland.

rkageyama

Hi Bobbie

Sorry to cut in. but, my CFS doctors here had recommended me
two kinds of sleeping pills, "zolpidem tartate" and "flunitrazepam".
Are they on the damaging-cell list? (Probably....)

Wondering,
Rika
Minority version of CFIDS

bliss

Hi Rika Kageyama,


RK> Hi Bobbie
RK>> Lay off the caffiene and sleeping pills. Stuff with
RK>> very low levels of caffiene may be ok like decafe coffee
RK>> and
RK>> tea but caffiene at normal levels is almost always are
RK>> problematic
RK>> for CFIDS patients.
RK>> You don't mention the sleeping pills you are using so I
RK>> can only say that some of the most common drugs given are
RK>> very
RK>> hard on cfids damaged bodies.
RK> Sorry to cut in. but, my CFS doctors here had recommended me
RK> two kinds of sleeping pills, "zolpidem tartate" and
RK> "flunitrazepam". Are they on the damaging-cell list?
RK> (Probably....)

You can only tell thru your personal experience as
far as I know. Remember I am of an older generation and
when I was working as a nurse barbituates and similar
were the "sleeping pills". Thorazine and other strong
tranquilisers were coming into use and weren't good for
you but were better than locking up psychotics. All were
hard to quit and the tranquilisers were capable of
promoting a condition called "tardive dyskinesea(sic)"
which resemble the trembling of early Parkinson's disease.

Try not to use the sleeping pills every night. I use
Taurine 500 mg to help me rest at night. I take it on
my own schedule up to three times a day usually at twice
a day. It is simply an amino acid that helps moderate
the nervous system. Or maybe it is just a placebo.
Don't bother to ask me if I care whether it is or not.
The rest at night is more important to me than the exact
status of the Taurine. I used to use L-Tryptophan to
help me sleep at night but the USA's FDA pulled it off
the market after one batch was contaiminated. 5-HTP
is the same but twice as expensive as the original
L-Tryptophan and 4 times the cost of Taurine.

Remember though to pay attention to the results
of whatever sleeping pills you use. Try not to use the
strong prescription medications every night for sleep
because most of them will cause you to develop tolerance
so that doses will either need to be increased or the
medication changed.

You can get detailed information on nearly any medication
by going to google.com and searching on the name of the medication.
RK> Wondering,
RK> Rika
RK> Minority version of CFIDS

later
bliss

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

The Californians are an idle thriftless people, and can make
nothing for themselves. Aside from beautiful bridges and vast
freeways and tran-uranic elements, very little indeed.

rkageyama

Hi Bobbie,

Thank you for your sharing !!
I'll search the structures of my sleeping pills first of all.

Hugs,
Rika

hesapa

Richard, I think I've mentioned I'm reading a book by Dr. Stephen
Sinatra on these cardiac conditions, all of which he believes are at
heart (OK OK) lack of energy at the cellular level. Medication
(statins) for overactive thyroid is one of things he mentioned as
needing a substantial compensatory dose of CoQ10, in addition to the
extra needed to help restore the energy pool of the cell. He doesn't
mention low thyroid, are you taking any sort of statins? (also given
apparently to lower cholesterol) If so, you may very well be feeling
worse because the overall energy system is being even more depleted.

By the way, this book is turning out to be some of the best $ I've ever
spent. It explains exactly what goes on at the celluar, and sometimes
mitochondrial, and sometimes particular chemical interaction, levels.
And what degrades that, and what can be done to try to support the
cells' and systems' functions getting back to adequate function. Man,
is it complicated. The long and short is, it's amazing any of us are
doing as well as we are, and there are some things we can do to help
ourselves, budget willing. I'll write more if you like, though the best
thing would be to get a copy of this book. Disclaimer applies: I am
unconnected in any way other than as a reader.

The Sinatra Solution: Metabolic Cardiology by Stephen T. Sinatra, M.D.,
F.A.C.C. isbn 1-59120-158-6

And No, it can take way longer than a year to "come back" to anywhere
near where you were before your last crash or slide. And it does sound
like you are in a slide. Despair not.

Feel free to email me back channel if you want to discuss specifics of
what vits etc you're taking and what he says is useful.
best, Marnia