Cardiac PFO in CFS Explained/ Dr. Cheney

August 30, 2006

CFS, Heart Problems, and a Risky Procedure: A Warning from Dr. Cheney

by Carol Sieverling, reviewed and edited by R. Cheney, M.D., Ph.D.

I had a relatively brief appointment with Dr. Cheney at the end of June. He is

very concerned that the CFS community will hear that he has detected a heart

problem called Patent Foramen Ovale (PFO) in a significant number of his

patients, and that as a result, many CFS patients will pursue a corrective

procedure that is potentially very dangerous. He asked me to write an article

informing CFS patients about the risks of undergoing a catheterization procedure

to close a PFO or Atrial Septal Defect (ASD).

Background -

Virtually All CFS Patients Have Diastolic Dysfunction

As most are already aware, Dr. Cheney has found that the cellular energy deficit

at the core of CFS results in diastolic heart dysfunction. This heart condition

does not trigger CFS.

However, the heart is affected as CFS progresses and cellular energy

disturbances mount. About 100 of his patients have been tested in his clinic via

echocardiography (a sonogram of the heart) and all but one

were positive by one or more parameters indicative of diastolic dysfunction. The

exception is a 21-year-old patient and her age may have been a factor.

For those who want more technical details on testing for diastolic dysfunction,

all patients (except the 21-year-old) evidenced diastolic dysfunction by their

pulmonary vein D/S ratio. In addition, Dr. Cheney is finding that his older

patients, typically over 50, manifest diastolic dysfunction by the classical

reversal of the mitral in-flow E/A ratio. This E/A reversal accounts for 40% of

all the patients he's tested so far. This ratio jumps to 60% if the TDI e'/a'

reversal is also used as either/or criteria for diastolic dysfunction. Younger

patients manifest diastolic dysfunction primarily as left atrial cavitation

during 70-degree head-up tilt. (The tilt is part of his echo protocol). Seventy

percent of his patients are in this category.

Except for a small group of

middle-aged patients, the E/A or e'/a' reversal as compared to atrial cavitation

is usually mutually exclusive. However, both aberrations can exist together in

the middle-aged patient.

There have been other online postings that discuss Dr. Cheney's understanding of

diastolic dysfunction in CFS (Co-Cure.org), as well as the three-hour video of

Dr. Cheney's presentation to our support group just over a year ago. A few of

those videos are still available from dfwcfids.org.

(A new Cheney video and/or

DVD should be available this fall).

What is a PFO?

In most people, the right and left sides of the heart have no opening between

them. Circulated blood flows into the right side of the heart. It then goes to

the lungs to pick up oxygen, dump carbon dioxide, and has mini-clots filtered

out as well as potential portal vein toxins and toxic gases produced by

fermentation in the gut. From the lungs it goes to the left side of the heart,

which sends it on to the brain and body.

When the fetus is in the womb, however, it relies on its mother for clean,

oxygenated blood from the umbilical cord blood and does not use its lungs. As a

result, the fetal heart has an opening known as the Patent Foramen Ovale (PFO).

This opening allows blood to take a short cut from the right atrium (upper

chamber of the right heart) to the left atrium, which sends it on its usual path

through the left ventricle and out the aorta to the rest of the body. The PFO is

formed by two overlapping tissues or septi, the septum primum and the septum

secundum.

Typically, when the lungs kick into action at birth, pressure in the right heart

substantially decreases relative to the left side and the PFO slams shut and the

two tissues grow together, forming a permanent seal. But in up to 20 to 30

percent of the general population, the flaps of both tissues press together but

never fuse. This can potentially allow unfiltered blood to escape into the left

side of the heart from the right, depending on the difference in pressure

between the right and left sides.

However, the normal pressures in a healthy heart (left side greater than right)

keep the flap valve from opening, so the

vast majority of people with a PFO experience no problems.

A PFO opens when more pressure is created in the right side of the heart. This

can be produced acutely by a Valsalva maneuver, and can occur when people cough,

sneeze, lift something heavy, or strain at stool. If the pressure is enough to

open the PFO, blood can flow from the right atrium to the left.

Dr. Cheney demonstrates the basics of a PFO visually with his hands. Hold your

hands as if in prayer against your chest. Tilt your hands down and point them

away from you, but keep them against your chest. (They represent the wall

separating your atria, the two upper chambers of your heart.) Slide the left one

down so that your left index finger is aligned with your right ring finger.

Your right hand stays stationary. Your left hand is the " valve " that moves. Keep

your little finger still - it's the hinge - while tilting your left hand away

from your right.

This is a rudimentary representation of a PFO.

With your hands in this position, you should be able to feel why higher pressure

on the left keeps the PFO shut. (Your left hand pushes against your right.)

Conversely, higher pressures on the right cause the valve of the PFO to open.

(Your left hand tilts away from your right.)

For excellent diagrams and a good description of the development of a PFO in

utero and after birth see

www.oucom.ohiou.edu/dbms-witmer/Downloads/Witmer%2008-21-02%20Heart%20defects.pd\

\

f. (See pages 7-9, Atrial Partitioning II-IV).

Most (Perhaps All?) CFS Patients Have a PFO

In late April Dr. Cheney began looking for PFOs in his patients based on

evidence of high right-sided pressures and low left-sided pressures in CFS

patients. To date he has administered contrast echos to 24 patients.

Seventy-eight percent of those not on the treatment protocol for his current

research study were positive - a PFO opened and visibly shunted blood from one

atrium to the other. A Valsalva maneuver is used to induce the PFO to open while

the contrast IV saline with micro-bubbles of air flow through the heart. This is

called a saline bubble test. (Actual echo photos of a positive test result will

be posted on dfwcfids.org in our " Cheney section " .)

One published study found that when contrast IV saline was administered in the

arm as opposed to the groin area during this test, a false negative rate of 30%

occurred. Since the groin area cannot be used for the IV in the setting of Dr.

Cheney's clinic, and the arm is typically used by most physicians, it's possible

that virtually all of his patients have (or had) PFOs that shunt blood from one

atrium to the other. This obviously assumes that those who tested negative

actually have PFOs that went undetected (i.e. false negatives).

Dr. Cheney suspects that the PFOs of most CFS patients open only transiently,

not chronically. In other words, the flap valve only opens occasionally.

However, the size of the PFO and how often it opens varies from patient to

patient. During the contrast echo, some patients clearly had a large opening,

allowing more bubbles to cross into the left atrium. Others only had a very few

bubbles moving across, indicating a much smaller opening or less pressure

difference between the right and left atria.

Consequences of a PFO

In adults, this two-flap valve (PFO) between the right and left atrium allows

blood to flow either way, though it tends to flow predominantly in one direction

in any one person. A right to left shunt (flow) increases the risk of a stroke,

since the lungs have not filtered out mini-clots. (Taking low-dose aspirin three

times a week along with a daily supplement of Nattokinase or Lumbrokinase, is

not a bad idea.

For a comparison of the latter two, see

www.allergyresearchgroup.com/faq/index.php?article=182.)

Dr. Cheney suspects that these mini-clots explain why so many CFS patients (up

to 50%) have punctate lesions or Unidentified Bright Objects (UBOs) on their MRI

brain scans. Each UBO may actually be a very tiny area damaged by a mini clot.

Migraines have also been linked to PFOs that shunt right to left. Clinical

trials are underway to close PFOs in patients with severe migraines that are

non-responsive to medication. Dr. Cheney pointed out that carbon dioxide levels

in the blood rise with a right to left shunt since unoxygenated blood from the

right side gets dumped into the left arterial circulation. Since carbon dioxide

is a vasodilator it would cause arteries in the brain to dilate, which could

trigger a migraine.

The increased carbon dioxide could also cause slight brain swelling, which could

be mistaken for Chiari I Malformation. Many will remember all the publicity that

this defect received a few years ago as it mimics CFS, and the brain surgery

that some underwent with mixed results.

Higher levels of carbon dioxide would also explain some patients Dr. Cheney has

seen through the years whose symptoms seemed to mimic carbon monoxide poisoning.

There are different risks if the PFO primarily shunts from left to right,

sending blood from the left atrium to the right atrium.

From there it's pumped through the right ventricle into the pulmonary artery and

into the lungs.

Increasing the amount of blood in the right atrium can increase the pressure of

the blood moving into the lungs. If the pressure on the right side of the heart

is high enough, pulmonary hypertension can develop and eventually become life

threatening if it rises too high. (Pulmonary hypertension is a disorder in which

the blood pressure in the pulmonary artery rises far above normal levels.)

A left to right shunt also reduces the efficiency of the heart as oxygenated

blood is returned to the right heart, going in the wrong direction.

The heart has to work harder to overcome this inefficiency.

Cause of PFOs and ASDs in CFS Patients

Researchers state that between 20% and 30% of the general population has a PFO,

yet Dr. Cheney's findings as of July 19th indicate that 78% of his " non-study "

CFS patients have one. Are people with PFOs at risk for CFS, or does CFS create

PFOs? Though there is no definite answer as yet, Dr. Cheney strongly suspects

the latter.

There is evidence in CFS patients that right-sided pressures are higher than

normal and left-sided pressures are lower than normal. There's a complex

explanation for this that I'm not sure I fully understand - see the note at the

end for my attempt at an explanation (thankfully heavily edited by Dr. Cheney).

The bottom line is that when the pressure on the right side of the heart rises

high enough in relation to the pressure on the left side, it's possible that a

PFO sealed after birth could pop open. Thus CFS could conceivably create PFOs.

Once a PFO exists, whether it never sealed after birth or was later blown open

by the pressure differential of the two sides of the heart, CFS can enlarge it

through the following process:

(1) The cellular energy deficit of CFS leads to diastolic dysfunction of the

heart. (

2) Textbooks state that diastolic dysfunction leads to dilation (enlargement) of

the left atrium and increased

right ventricular systolic force.

(3) Referring to the diagrams on the website given above or to the arrangement

of your hands described above, imagine the two

opposing flaps that make up the PFO being pulled farther and farther apart by

the left atrial enlargement. (The lower hand being pulled down). The flap that

moves and is considered to be the valve is the lower one and is structurally

part of the left atrium.

The combination of left atrial enlargement and a high right to left pressure

difference could explain why nearly 80% of CFS patients have tested positive for

PFOs, and why their primary shunting is typically from right to left.

As the left atrium expands over time, the PFO may gradually transition from a

flap valve to an actual hole. Cardiologists then call it an ASD and usually

insist that it has existed since birth, which may or may not be the case in CFS

patients. In the context of CFS, with left atrial enlargement and a high right

to left pressure differential, the difference between a PFO and an ASD is simply

a matter of degree - a distinction without a difference. When the flaps can no

longer oppose each other, the PFO becomes an ASD.

There is precedent for a disorder in which left atrial enlargement can lead to

the formation of an ASD. It's called Lutembacher Syndrome.

This disorder is defined as a combination of mitral stenosis and an ASD shunting

left-to-right and even bi-directionally. (Mitral stenosis is a narrowing of the

valve that lies between the left atrium and left ventricle.)

Classic Lutembacher Syndrome

is usually described as a congenital mitral stenosis and an acquired ASD.

Recently, several variants have been described.

Dr. Cheney's research into this subject revealed that left atrial enlargement is

part of Lutembacher Syndrome and that left atrial enlargement could produce an

ASD by enlarging a PFO or enlarging a pre-existing small ASD. It's worth noting

that less than one percent of the general population has an ASD, but that people

with mitral stenosis have a much higher incidence rate of ASDs, suggesting that

something (such as left atrial enlargement) is actually creating the ASD.

Why Not Close the PFO or ASD?

Until a few years ago, all PFO and ASD closures involved open-heart surgery and

the use of a heart-lung bypass machine. In 2000 the FDA approved a device called

CardioSeal. In 2002 the Amplatzer device was approved. CardioSeal contains a

nickel-cobalt-chromium-molybdenum alloy. Amplatzer contains nickel and titanium.

Both devices are collapsible discs that are threaded though the femoral vein

into the heart. Once in place, they open up like umbrellas and anchor to the

wall of the atrium with hooks. The ASD or PFO is sandwiched between the two

connected metallic mesh discs.

Approximately a year ago a patient of Dr. Cheney's with a 15-year history of CFS

had a device implanted in his atrial wall via a catheter threaded up the femoral

vein. His story is very enlightening.

He had several echos done from 2001 to 2004 that showed pulmonary hypertension,

but there was no mention of a PFO or ASD in the echo reports.

(After recently examining some of those earlier echos, Dr. Cheney noted the

classic E/A reversal that denotes diastolic dysfunction.) During that same

period the patient was

also having brief, unsustained bouts of atrial fibrillation that were gradually

becoming worse.

In the spring of 2005 the patient had another echo done in his hometown that

revealed a 50% ejection fraction (above 55% is normal), mild regurgitation in

the tricuspid and mitral valves, a slightly enlarged left atrium, pulmonary

hypertension of about 50 mm Hg (normal is 16 mm Hg, primary pulmonary

hypertension is anything above 25 mm Hg at rest), and most disconcertingly a

very large ASD.

The cardiologist emphasized the size of the hole in the atrial wall and told him

he'd probably had it since birth. The patient isn't sure he's had the ASD since

birth, given his previous health history and the large size of the ASD. It's

highly unlikely such a large hole in the heart would go undetected for nearly 60

years.

A procedure to close it was done about a year ago. He is the first and only

patient of Dr. Cheney to undergo this procedure - at least so far. After a short

bout of atrial fibrillation immediately after the procedure, he experienced

three weeks during which he felt as if he had been cured. In the last 20 years

he'd never felt that good.

Then his atrial fibrillation recurred, soon becoming chronic and unresponsive to

therapy. Months went by and nothing could control it. His left atrium further

enlarged and he deteriorated clinically. Atrial fibrillation is very poorly

tolerated when one also has diastolic dysfunction.

In February of this year, he went to a nationally renowned clinic for a

consultation about his chronic atrial fibrillation.

This national clinic is well

known for its expertise in a laser procedure called a Mini-Maze used to cure

atrial fibrillation. They did an echo and discovered that his heart had nearly

been destroyed. Both atrio-ventricular valves were now severely leaking and his

ejection fraction was down to 30%. They told him he would die without urgent

open-heart surgery. His diagnosis was changed from " chronic atrial fibrillation

following ASD closure " alone to now include " valvular heart disease " , a

diagnosis he'd never had before.

He had both valves repaired and the Mini-Maze laser procedure was ultimately

successful at stopping the atrial fibrillation. Dr. Cheney credits the surgeon

and clinic with saving the patient's life. They told him that with the

fibrillation halted, his left atrium would reduce in size.

They also told him

that the ASD closure device appeared to have " traumatized " tissue growing over

its metallic mesh surfaces. (It's normal for endothelial cells to gradually

cover the implanted device, though it's not normal for them to become

" traumatized " .)

In May, the patient made several trips to the ER, most for tachycardia (rapid

beating of the heart). His fourth trip was prompted by trouble breathing and

feeling faint. They found he was experiencing cardiac tamponade - the heart was

being compressed by fluid accumulating in the space between his heart muscle and

the outer covering of the heart, known as the pericardial sac.

That day and the next they used a syringe to draw out a total of over 3 liters

of fluid from that

space. (That's over 3 quarts!).

The patient stabilized enough to finally see Dr. Cheney the last week of June.

(I saw Dr. Cheney two days later, after he'd had time to start processing all

that he had learned from this patient.) Dr. Cheney noted that the echo done at

the patient's June visit looked " pretty good " , except that his left atrium was

larger than ever, and he still had a significant pericardial effusion (fluid

gathering in the pericardial sac) and continued evidence of diastolic

dysfunction. His ejection fraction was normal and his heart valves were no

longer leaking. In many ways, his situation was pretty stable considering all

that had happened.

Conclusions

Dr. Cheney spent much time describing this case to me, and in turn I have

devoted much space to it here because it illuminates some very important points.

While it's very likely that some elements of his story are unique to this

patient, there is much that suggests that implanting these devices in a CFS

patient carries significant risks of which cardiologists may be unaware.

His shunting before the closure was likely in both directions. Now, without the

ability to shunt blood over to the left side, too much pressure might build up

in the right side. He no longer has the safety of the pop-off or release valve

effect of the ASD. Some cardiologists are hesitant to close some ASDs for this

very reason. The problem is a conundrum because failure to close a large ASD

could also result in increased right-sided pressure if the shunt is

predominantly left to right under high pressure.

The traumatized tissue on the implanted device is what concerns Dr. Cheney the

most. The device used for this procedure contains nickel, a heavy metal, and Dr.

Cheney believes that the tissue could be reacting to it. (A friend of mine with

CFS once mentioned that some of her earrings caused her ear lobes to swell and

turn red. She finally figured out that this only happened when the earrings

contained nickel.)

Nickel poisoning could set in motion Fenton chemistry that

could increase his diastolic dysfunction, which would further enlarge his left

atrium.

Therefore, the use of nickel could be contributing to the very disease process

that made its use seem necessary in the first place. (Nickel testing may

reveal if he is, in fact, reacting to it).

The diastolic dysfunction itself most likely started the enlargement of his left

atrium, which may have widened an existing PFO or smaller ASD, and even

contributed to the development of atrial fibrillation. Dr. Cheney is convinced

that CFS created or interacted with the patient's ASD, especially in light of

the new data on CFS and PFOs.

His cognitive complaints were slowly developing after CFS onset and may have

been connected to or even caused by the evolving ASD and increased right to left

shunting.

Dr. Cheney's major concerns:

[1] If the left atrium is enlarging due to CFS associated diastolic dysfunction,

should you even consider implanting a device into it? The continued enlargement

expected in untreated diastolic dysfunction might simply cause the tissue

growing over the device to stretch and tear. The resulting damage and

inflammation might cause the heart to react by building up fluid around it that

may result in tamponade (compression of the heart with fluid) or evoke chronic

atrial fibrillation. Needless to say, Dr. Cheney has serious reservations about

implanting a device to close a PFO in a CFS patient if the left atrium has not

yet been stabilized by treating the underlying diastolic dysfunction.

[2] Dr. Cheney is also very concerned about the interaction of nickel and the

pathophysiology of CFS.

Implantation of the closure device containing nickel

puts CFS patients at risk for the induction of Fenton chemistry, which will

exacerbate the underlying CFS pathophysiology and further enlarge the left

atrium.

[3] Dr. Cheney suspects that we do not really understand the implications of the

presence of the PFO/ASD in the setting of such a complex disorder as CFS, and

all the interrelationships that exist. The pop-off valve effect of a PFO/ASD

that releases pressure is an example.

He is concerned that if the PFO/ASD is closed, a lot of physiology could be

changed abruptly, and because it is so

complex and interrelated the patient could get worse.

Signs of Hope

I have saved this final point for last because it's hopeful. Dr. Cheney is very

intrigued that the patient described above, who clearly has CFS associated

diastolic dysfunction, felt cured for three weeks after his ASD was closed.

Obviously, there were problems that would have surfaced eventually, given the

state of the tissue over the device and the development of chronic atrial

fibrillation.

But his " three-week cure " raises the possibility that if it were possible to

restore normal pressures to the heart and keep PFOs from opening, or to

stabilize the left atrium and keep PFOs from developing into larger PFOs or

ASDs, a significant positive clinical transformation might be possible. Dr.

Cheney wonders how many of our symptoms are totally, or at least partly, derived

from a PFO. He doesn't yet know for sure, but the possibilities are intriguing.

Other than open-heart surgery or the implantation of a device containing nickel

through a femoral vein, cardiologists have little to offer. However, Dr.

Cheney's current study protocol is yielding very interesting early results. And

it is early - the study will not be fully completed until late this year or

early next year. There are two distinct stages of treatment, and the second has

two different dosage groups.

There are about 20 participants and they are at different points on the study

timeline. Many are just starting the second phase

of treatment, so the full benefits of the study protocol have yet to be seen.

Two early hopeful indications from the study relate to PFOs and suggest that the

treatment protocol is leading to an improvement that is normalizing pressures in

the heart and keeping PFOs closed.

First, the numbers change as more patients are tested, but currently 67% of

study patients test positive for a shunting PFO versus 78% of those not on the

study treatment protocol. And it's possible many study patients who are testing

positive now will test negative after they've been treated for a longer time.

The hope is that those study patients who tested negative are not false negative

(i.e. actually have a shunting PFO that was not detected), but have been on the

treatment protocol long enough to have improved their cardiac function to the

point of keeping a PFO shut.

Unfortunately at the time the study began, PFOs

were not even on the radar thus making a true baseline for a shunting PFO

impossible to determine for many study patients.

If this data holds true over time and with larger numbers, this could represent

an alternative to open-heart surgery or having a device implanted, at least for

many CFS patients.

Second, my own experience suggests that the treatment does indeed normalize

heart pressures and may keep a PFO closed. I am in the study and have been on

the second phase, the porcine heart cell signaling factors, since May 24th.

While it was not possible to test me early enough to get a true baseline for a

shunting PFO, there is evidence that I have a PFO that was shunting, albeit

perhaps only to a mild degree, until just recently.

I was negative on the contrast echo at my June 30th appointment, indicating that

no shunting was taking place, which is great news and matches my overall

improvement.

Indications that I may have a PFO that was shunting right to left and is now

likely staying closed are:

*Increased pressure on the right side of the heart (TRmaxPG on the echo). A high

pressure in September of 2005 dropped 35% into the normal range on both my

2006 April and June echos.

*Venous blood gas testing showed low PO2 levels in March (possible shunting),

but normal levels in May (no shunting).

*The echo sonographer described the area of my left atrium where a PFO would be

located as " very thin " . Dr. Cheney said that's how a PFO typically looks,

though this is far from definitive.

*I have a history of migraines that do not respond to medication, but have not

had any recently.

*I had " punctate lesions " or UBOs on an MRI done several years ago.

*While wearing a pulse-oximeter clipped to my finger in Dr. Cheney's office in

April of this year, my oxygen saturation suddenly and inexplicably dropped to

81% and then rose back to normal (98%). I have been monitoring it since May, and

it has not dropped into the 80's (except during intentional breath holding) at

any time that I have been aware of.

With few study participants even at the halfway point yet, Dr. Cheney is not

comfortable giving out treatment protocol information. And even if adjustments

in the protocol are not made at the conclusion of the study, his primary concern

is that no treatment protocol is ever one-size-fits-all. It's always

individualized for each patient. So the treatment protocol needs to be presented

in a setting that allows him to provide a context and go into more detail.

Dr. Cheney is light years ahead of where he was a year ago when he spoke to our

support group here in the Dallas - Fort Worth area. He wants to come speak again

and we are working to arrange a date in late August or September. A DVD of the

presentation should be available some time after the seminar.

Watch for online announcements on the Co-Cure.org announcement list or see our

website,

dfwcfids.org, for details as they become available.

In the meantime, if you are a CFIDS patient and discover you have a PFO or ASD,

please think twice before allowing the implantation of a device containing

nickel into an atrial wall that is, or will likely be, expanding. Please wait

until more is known about these complex issues and until we see what benefit Dr.

Cheney's current research study protocol has to offer.

*********************************************************************

Note from the section on the cause of PFOs and ASDs in CFS patients:

The increased pressure on the right side of the heart may in part be a result of

a left shift on the oxygen-hemoglobin dissociation curve observed in most CFS

patients. Interestingly, babies in the womb are left-shifted due to fetal

hemoglobin and therefore have higher pressure on the right side of the heart,

and of course they have a PFO.

All of this is normal, even necessary, for fetuses - but not for adults. In a

sense, the left shift and higher right-sided

pressures the left shift produces are telling our bodies that we are back in the

womb and therefore a PFO is necessary for life - a fact that is not true for

adults.

The left shift on the oxygen-hemoglobin dissociation curve and the resulting

reduction in oxygen transfer into the cells of the body is actually a defense

against the redox (reduction-oxidation) problem described in my 2004 article on

the heart which can be found on our website, dfwcfids.org.

It describes Pall's work, particularly the production of energy (ATP)

which generates

superoxide in the mitochondria, which under normal circumstances is safely

reduced to water by enzymes embedded in the mitochondria and just outside the

mitochondria.

However, in CFS the enzymes do not seem to function effectively due to a variety

of reasons, most of which are the subject of speculation. This allows superoxide

to leak out of the mitochondria where it can combine with nitric oxide to form

peroxynitrite, a very deadly free radical. Because it takes one superoxide

molecule combining with one nitric oxide molecule to produce one molecule of

peroxynitrite, the levels of peroxynitrite in the body can be significantly

reduced if there isn't much superoxide available to combine with nitric oxide.

And in CFS that's exactly how the body defends itself against terrible damage

from peroxynitrite - it cuts back on energy production which in turn lowers the

production of superoxide.

Note: Increasing the energy of a CFS patient is extremely dangerous unless you

first restore the enzymes in the mitochondria and the supporting co-factors they

need to work well. If superoxide cannot be safely broken down into water and/or

peroxynitrite neutralized, inducing energy in a CFS patient will likely result

in a major relapse, perhaps worse than any state previously experienced. Be very

cautious with any product on the market designed to increase cellular energy in

CFS if you haven't first restored the function of the enzymes needed to handle

the by-products of such energy production. Of course Dr. Cheney's current study

protocols are intended to address this very problem.

The push-crash phenomenon, whether on the small day-to-day scale or on a much

broader scale, is actually part of the CFS case definition and the principle

cause of CFS disability. In effect, the fatigue of CFS is a defense mechanism,

and push-crash is simply a way to enforce this mechanism and protect the

patient.

To summarize, the redox problem in CFS causes the body to actually put

mechanisms in place to lower the amount of oxygen getting into cells. This is a

protective, compensatory measure. This acute reduction in oxygen to the cells is

caused by a left shift on the oxygen-hemoglobin dissociation curve. This results

in increased right-sided pressures in the heart. When these pressures are high

enough, they can pop open a PFO that was previously sealed at birth.

The diastolic dysfunction of CFS also plays into this picture by causing left

atrial dilatation and by increasing the right ventricular systolic squeeze.

Unfortunately, a PFO with a right to left shunt forces a shift to the right on

the oxygen-hemoglobin dissociation curve and can therefore cause serious redox

problems by driving oxygen into the cells. PFOs in a CFS patient are therefore a

serious menace as they effectively evoke oxygen toxicity throughout the body. In

a curious way, CFS and newborns are both supersensitive to oxygen toxicity and

for similar reasons.

Edited by R. Cheney MD, PhD

--------------------------------------------

September 1, 2006

Very interesting Post!

September 1, 2006

Hi ,

Dr. Cheney's 3 hour lecture will be on September 9th. We may get some reports

here soon after, and then we can order the video. It will be very exciting to

hear the " light years ahead " info, and progress report on the his patients in

heart cell signal factors in trial. Especially with 99% CFS patients Echos

showing the Diastolic Dysfunction, and al least some better, in the trial.

I was one of the early tested and found to have the DD. Dr. Cheney had me on the

Trial list

but I was not able to get to Asheville for my appointment in April. I have been

on the initial protocol and improved, so I really want to hear his current

thinking and suggestions!

Best wishes,

Katrina

>

> Very interesting Post!

>

September 4, 2006

Hi Katrina,

after I read the article a second and third time it gets more and

more interesting. When I see the cardiologist I will ask him to

check for a PFO. I just wondered what kind of treatment you get

since it's probably not a good idea to use a device that closes the

PFO.

Are there other ways?

Will Dr. Cheney talk about this on Saturday?

Greets

> >

> > Very interesting Post!

> >

>

September 4, 2006

Hi ,

Yes, I think it's very fascinating...I like to at least be fascinated when

dealing with something scary .

A person with a PFO can see their blood on the machine, swooshing over to the

other side through that opening. Yikes.---

{I haven't had that test}

Since the PFO thing and the Nickle thing is new to Dr. Cheney, I don't think we

know the answer, except to wait for now. ANd that other treatment may correct it

or make the correction uneccesary.

A UK patient with spouse with PFO was going to ask around about nickle

alternatives. And I'm sure Dr. Cheney will be searching for a solution. ANd yes,

I'm sure he will talk about this on Saturday.

We almost lost Dr. Cheney becasue he had a heart transplant. During that time, I

almost lost my Uncle who wanted to send me to him. I was also hospitalized and

felt like I was dying...not just usual sense with CFS, but " actually " .

Then, next thing I know, we all lived and I was in N.C.!

Finding out what put me in more advanced stage (heart, which by that time I

suspected), was just unbelievable...that someone knew, it showed on tests, there

is dedication to solve it, and an opportunity and plan to begin " now " !

Many of my symptoms can be explained by the " erratic distribution of low blood

flow " and compensatory processes.

Dr. Cheney knows this illness so specifically, he could almost tell me my

symptoms before I spit them out. Quite amazing after 20 years with no one

knowing Zip.

The Heart is his focus now because it is new and so significant. The NIH

Peckerman/Natleson study was so profound because it demonstrated actual levels

of disability, which is a first for CFS.

I had angina like pain, which mostly went away from the treatments. I have

survival tools to do each day. I am lucky for now to be on extensive, expensive

protocol. It addresses the things specific to my case...some complications that

not everyone has.

But some are basics and not hard to do...Magnesium in all forms, feet up or

moving...always, Hawthorne, Boluoke for me for fibrin, COq10w/Idebenone...

Mainly things for *Microcirculation*

I'm taking a ton more stuff. B-12 injections have really helped my brain.

Cheney patients are in a heart cell trial now and will wait to talk about it til

after and after he explains some context.

It does take alot of study, and I'm glad you're interested. THo I cannot retain

or articulate it all, and it is complex, I understood everything he told me, and

that I read in the articles. I don't know if it is his style or that the subject

matter is so clearly about me, my systems. Some of his advice over the year, I

resisted...but 99% has turned out to be correct and correcting.

I can not only take walks nearly every day, but with a bounce in my step lol.

Like a different person from before. I had alot of setbacks during the year, and

still have many issues, and treatment is very time consuming. I wish I could do

it more perfectly.

I'm really grateful to Carol S, and Dr. Cheney becasue, with his permission,

she kept us posted with transcribed visits all those years which gave me tools

and hope.

There is other heart info from Lerner and Peckerman.

I wish we/you could have the DVD or info now, or wait before you see the

Cardiologist. In case something unique to CFS would help to know.

Best wishes,

Katrina

In , " manuel_hbr " <einfachzumerken@...> wrote:

>

> Hi Katrina,

>

> after I read the article a second and third time it gets more and

> more interesting. When I see the cardiologist I will ask him to

> check for a PFO. I just wondered what kind of treatment you get

> since it's probably not a good idea to use a device that closes the

> PFO.

> Are there other ways?

> Will Dr. Cheney talk about this on Saturday?

>

> Greets

>

> > >

> > > Very interesting Post!

> > >

> >

>

September 4, 2006

Katrina wrote;

" I have survival tools to do each day. "

Could you please elaborate on that? Sounds like you mean more than taking

supplements.

And how did you arrive at the choice of Boluoke over other products?

Thanks,

Adrienne

September 4, 2006

I like your answers, Katrina.

They give me hope on the one side and the feeling not to be alone on

the other side.

It really scares me what many CFS patients went through or still go

through. CFS is so challenging...

When I read the paper about diastolic dysfunction the first time it

was like reading a paper where I wrote down my symptoms. Skin (low

thermoregulation), MCS, muscles (I was athlete before and did lots

of sports so maybe that is why I don't have pain " Men had a higher

capillary cross-sectional area (more capillaries) than women.

Athletes have more than non-athletes. Male athletes are therefore

more resistant to microcirculatory problems within the muscles " , Gut

(I was diagnosed with leaky gut and I'm low on stomach acid and

digestive enzymes), brain (processing speed, concentration, etc.),

EBV infection , allergies, weight loss...

It all fits into the picture of diastolic cardiomyopathy!

At the moment I prepare some sheets for my cardiologist (I will see

him in 3-4 weeks). I give him an introduction to CFS and the science

behind it, my symptoms, the fact that we are years behind in Germany

and of course the reason why I visit him, diastolic dysfunction+PFOs.

Greets

> > > >

> > > > Very interesting Post!

> > > >

> > >

> >

>

September 4, 2006

>

> Katrina wrote;

>

> " I have survival tools to do each day. "

>

> Could you please elaborate on that? Sounds like you mean more than

taking

> supplements.

>

> And how did you arrive at the choice of Boluoke over other products?

> Thanks,

> Adrienne

>

September 4, 2006

, Unless you know your doctor's capacity and tolerance, be very careful

how and how much information you offer him. Provide him with summaries and

highlights, make your main points, and then offer more detailed information as

he shows interest or as he tries to deny the importance of your points.

I am saying make it as easy as possible for him.

As much as possible provide things from professional journals. Like the

Peckerman paper.

Best,

Adrienne

September 4, 2006

Adrienne,

I don't know if you remember but I did give a report when I returned...it's in

May 05.. " Cheney visit " or something...maybe a couple of others. ANd quite few

since.I did talk about the feet up and you related to it.

That alone, much more consciously than I had before (unconsciously) was the best

1st thing I did when very severe and ever since.

This raises cardiac output by one liter. Pacing, fidgeting, walking when upright

raises it by 2 liters. This means *constantly*...one or the other. This

seemingly simplistic thing is a very fine art and Science, especially when out

in the world. It's amazing how it helps brain and thinking too. I have turned my

Mom and a friend, with other Cardiac issues, onto this...in a much more

constant way than they were doing with their Dr.s instructions, and the

explanation of what it is doing.

I want to ask you here if you have Dr. Cheney's 05 video, since you have been

concerned with Cardiac issues?

Or read the pages on the DFW site? Or the PFO post here?

It's really important for a number of reasons. One is that it is kind of

complicated, and I can definitely not always remember or explain it!! It;s

better to get it fully from Dr. Cheney, or through Carols' posts.

But also, learning it can help to know if it's related to you...especially

knowing how you've made your decisions over the years. He gives pretty explicit

descriptions of things that are not as confusing or boring as they might be from

me.

I found at the time and when I re-read or look over notes, to be very supportive

to me actually doing everything that will help. I was not able to transcribe all

of may tapes, but I play some minutes sometimes, and even that helps. I have to

keep going back to the notes and diagrams becasue of memory of that sort of

thing.

The material available to all can serve that very same

purpose...perspective...validation, support to treat oneself, well!

{You talk about re-hashed treatment issues, but I am always seeing " old " ones I

never saw the 1st time around, or they were not relevant or available at the

time, or I forgot! So, they are new to me}

He still says a virus may have began the process...but yes, he still also says

(for over 10 years) Glutathione is depleted and SOD and Catalese. THey are

needed for the Mitochondria function and something bad's happening at cellular

level due to this dysfunction, See...I can picture it but my mind goes blank.

Anyway, raising those enzymes is important. I had taken Immunopro for years

already, and continue. Now I take Essential Glutathione too. Just a teaspoon

twice a week. I feel better when I do, but I think it's causing this fungal

issue, so I have to explore that. I do not have Dr. Cheney to call now, so I am

back to lost orphan land...except for my arsenal I learned to use.

I'm looking into raising Catalese and so far concentrated apple product looks

tantalizing.

I might have a Standard Process product for that...the cat.

Everything that was prescribed or I take, I looked up and read alot about it.

So, I clearly know at the time why, and what to watch for...even if I forget

this later, without reference.

He prescribed the Boluoke and I loved what I read. Worm proteins chomping up

fibrin.I have a great resource for getting this 5 bottles at a time at cheaper

rate.

I spend many many tedious hours trying to find best prices/shipping, which

change around alot...or I forget or cannot decide lol my brain stuff.

You have given yourself shots, but I never had. And could not stand to look at

needles. Learning at home to do procaine, magnesium, taurine, thena B-12 shot

was a truly harrowing experience for me. Anyway....

I also do .2 HGH twice a week.

Kirkman magnesium cream on chest, neck or arms...

Mag/Carnitine

Molybdenum for sulphur sensitivity

RNA

Boswellia for muscles

Folopro

Bio Reu-rella and a couple of other things for chelation

etc etc etc,

oh besides, instruction to walk, beginning 5-20 minutes daily, if possible, so

I worked up, had to start over many times/ In that year, I fell twice...cast for

a few weeks, months of rehab...pneumonia in 06, the so called brain tumor in

Dec...

Wiel breathing

Sleep Hygiene for sleeping...ha

Gazing at trees...I already did that

Now I walk pretty normally *balance* which took some time.

Use a rubber band thing to exercise upper body.

CranialSacral and Osteopath...alot of spinal issues.

Read the post to ...and Read the material OK

This is making me dizzy...the spelling lol til later...

Katrina

>

> Katrina wrote;

>

> " I have survival tools to do each day. "

>

> Could you please elaborate on that? Sounds like you mean more than taking

> supplements.

>

> And how did you arrive at the choice of Boluoke over other products?

> Thanks,

> Adrienne

>

September 4, 2006

Thanks for the effort Katrina. I got way more than I bargained for. And I think

someone else was asking for your whole program, so you got two birds..

I don't think I got a cd on heart. I had tried a videotape the year before and

it was a waste of money, because I could not follow for long. Did not own a

video player and was at friend's house, etc etc. (I do not own dvd player

either, for new one coming up so...I just put a request for one on Freecycle.

Maybe I will be blessed with one.)

I am not able to read much technical stuff either. Sometimes. I am just trying

to scavenge what I can, a bite at a time. I spend most of my energy when not on

this computer trying to get and sell used books, and just keeping head above

water. Every inch of progress is hard won. And then of course there is always

the demon Cost. I have to fly by the seat of my pants, intuit where to spend my

money. I have to say, I have not wasted much over the years.

At some point I read enough to decided I probably had DD. It was the first

sub-diagnosis that seemed to relate to me- as opposed to various bugs or metals

or etc.

I have never been a rapid adaptor to anything in life, lol. I am not dumb, but I

AM slow!!

Interesting about keeping on moving. My Native American husband, (1890-1975),

said his grampa said If you want to live a long time, don't sit down. Orchestra

conductors are said to live long- and my P.T just told me that exercising the

arms stimulates the heart.

What I gathered about the PFO was not to try to fix it by standard methods.

I appreciate yr point about " rehashed. "

I take hHGH at least once/day. (Homeopathic.)

It was easy to begin injecting myself, but many years for it to become routine.

It is much less painful if I do it regularly. I think the b12 itself

desensitizes me to the prick.

All the " stuff " you list below is what you are currently taking and doing? I

don't see that you are taking any SOD?

Re: Cardiac PFO in CFS Explained/ Dr. Cheney

Adrienne,

I don't know if you remember but I did give a report when I returned...it's in

May 05.. " Cheney visit " or something...maybe a couple of others. ANd quite few

since.I did talk about the feet up and you related to it.

That alone, much more consciously than I had before (unconsciously) was the best

1st thing I did when very severe and ever since.

This raises cardiac output by one liter. Pacing, fidgeting, walking when upright

raises it by 2 liters. This means *constantly*...one or the other. This

seemingly simplistic thing is a very fine art and Science, especially when out

in the world. It's amazing how it helps brain and thinking too. I have turned my

Mom and a friend, with other Cardiac issues, onto this...in a much more constant

way than they were doing with their Dr.s instructions, and the explanation of

what it is doing.