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Anyone on this site a patient of Dr. Paul Cheney in Ashville, NC?

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
I had an appointment to see Cheney when he was located on Bald Head Island, North Carolina. That was back in the late 90s, when he was really started to get a lot of attention, and patients were flocking to him. To get to the island everybody had to take a ferry. What nonsense for a CFS doctor. No respect for patients who could barely walk, much less tolerate a ferry ride.

Anyway, back then his office had a "no refunds under any circumstances" policy. I had an appointment scheduled and they some how screwed up and double booked the time. The next available slot was not for 9 months. I asked them to cancel my appointment and refund my money, as his confused, incompetent wife/ office manager obviously screwed up the scheduling.

It came down to a very tense conversation on the phone where I was told I would not be getting my money under any circumstances. I sent a registered letter to his dingleberry wife, telling her I was preparing to file a small-claims lawsuit against his practice and that I had all necesssary documentation to support my claim. A week later I got my check in the mail.

My advice is don't deal with this practice. This doctor has no ideas, and he obviously makes up things, intentional or unintentionally, that have no possible basis in reality. In the early 2000s he had a proprietary stem-cell therapy he was supposedly doing. That has apparently been replaced by another paradigm. The last time I looked his cash-only fee was $10,000 for the first day's consult !! If I remember from his website, he justifies it by saying he is effectively giving you many appointments, just all in one day.

I have seen Bell and Klimas. Other than some interesting test results showing probable basis for illness, I didn't get anything out of either visit. I decided a few years ago that these CFS all-star docs are not really to be relied on for very much. Mostly they will tell you to take supplements or offer you antibiotics (like no one ever thought of that one before).

Congrats to Kogelnik for actually trying out Rituximab on CFS patients. My hope is that time marches on, and new more earnest and helpful docs step in to take treatment of CFS to new areas. I'm certain if any establish themselves as compelling, they can basically name their price; because we are so desperate. We need some new blood in this area.

Great response-Hate to tell you- It is no longer $10,000.00----- $750.00 hour range. There are no blood tests. Just his Echo machine and talk. Mostly him. As I have said before -He is brilliant in research. I just can't get any answers about tests or followup treatment. I am looking in my area, SE, but there is no one close. Too sick to travel at the moment.
Appreciate feedback from patients or former patients as they know more what is going on.Also would like to know treatment patients with Dyastolic Dysfunction are getting and who they are seeing. Where is Dr. Kogelnik?

BE BRAVE AND STAY WELL

SANDIEGO
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
He is in the San Francisco area--Mountain View.

Sushi
Sushi- Went on the site for POTS. Great site. It covers everything that has to do with POTS and
it sounds a lot like CFS. Autonomic issues. Dr. Grubbs is the one to see on that and he is in OHIO. EBV and Heart issues can be caused by this and Vice Versa.. I think I had been on the site a long time ago.
Thanks,

SanDiego
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Sushi- Went on the site for POTS. Great site. It covers everything that has to do with POTS and
it sounds a lot like CFS. Autonomic issues. Dr. Grubbs is the one to see on that and he is in OHIO. EBV and Heart issues can be caused by this and Vice Versa.. I think I had been on the site a long time ago.
Thanks,

SanDiego

Hi,

For those who don't know the POTS site, it is POTSplace.com.

Unfortunately, I've been told the Dr. Blair Grubb is ill and not seeing patients right now--his office is in Toledo.

Sushi
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Hi,

For those who don't know the POTS site, it is POTSplace.com.

Unfortunately, I've been told the Dr. Blair Grubb is ill and not seeing patients right now--his office is in Toledo.

Sushi

I am so sorry to hear of his illness. There is no one here. One Dr. at Mayo in Jacksonville, Fl. Have commercial Property there we own. However I am not doing another dry run. Cheney had a lot of the same info-Just nothing was explained on what we were treating and why. Grubbs sounds like the best. Is he seriously ill? Know anyone that has seen him?
Don't know how you do the Brussels trip. Asheville NC almost did me in.Frustration, Frustration.

Thanks,

SanDiego
 
Messages
5
Saw Dr. Cheney a few months ago. Did Echo on me said, I had Diastolic Dysfunction.
My 3 Cardiologist disagree.Anyone had treatment here that helped?Need help!!

San Diego#1

A typical cardiologist would disagree because they typically do not know anything about diastolic dysfunction (DD) or think that only elderly people get it because of decreased elasticity of the myocardium that happens with aging. Cardiologist are trained and think much like mechanics to look at the heart as a mechanical pump - they see normal anatomy, normal EF, and they think you are fine - the problem is not mechanical, it is the underlying biochemical energy deficit that causes low cardiac output (CO) and DD.

There is no specific treatment for DD... if you have DD and low CO with an otherwise normal heart (that is us) then you have to try to treat the underlying cause, in our case, ME/CFS, which we all know there is no definitive or curative treatments at this point.

This video is pretty old and quite long (3 hours) but the first few minutes Cheney explains why he has found DD in most of his patients... I hope it helps. http://www.cfids-cab.org/MESA/CFS_Dist.htm
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
A typical cardiologist would disagree because they typically do not know anything about diastolic dysfunction (DD) or think that only elderly people get if because of decreased elasticity of the myocardium that happens with aging. Cardiologist are trained and think much like mechanics to look at the heart as a mechanical pump - they see normal anatomy, normal EF, and they think you are fine - the problem is not mechanical, it is the underlying biochemical energy deficit that causes low cardiac output (CO) and DD.

There is no specific treatment for DD... if you have DD and low CO with an otherwise normal heart (that is us) then you have to try to treat the underlying cause, in our case, ME/CFS, which we all know there is no definitive or curative treatments at this point.

This video is pretty old and quite long (3 hours) but the first few minutes Cheney explains why he has found DD in most of his patients... I hope it helps. http://www.cfids-cab.org/MESA/CFS_Dist.htm

CMEDME-

Thank you for the informative reply. I agree with you. My problem is I was never given this much of an answer. I know we are trying to build up my immune system so I can handle the Dys Dysf. I just have no bio markers as for rechecks, test results etc. I haven't looked at video yet. I have seen one that he did awhile back-maybe same one. Have you heard of a Dr. Bradstreet in Cumming , Ga??? I don't doubt the diag I have been given. I do doubt my CO is 1.8.

Thanks for your input.
San Diego
 
Messages
5
CMEDME-

Thank you for the informative reply. I agree with you. My problem is I was never given this much of an answer. I know we are trying to build up my immune system so I can handle the Dys Dysf. I just have no bio markers as for rechecks, test results etc. I haven't looked at video yet. I have seen one that he did awhile back-maybe same one. Have you heard of a Dr. Bradstreet in Cumming , Ga??? I don't doubt the diag I have been given. I do doubt my CO is 1.8.

Thanks for your input.
San Diego

I have heard of Dr. Bradstreet... I thought he mostly treated autistic children though. Does he treat ME as well? Your CO is definitely not 1.8 or you would be dead... your cardiac index (CI) possibly could be that low - Dr. Cheney says it is in many of his patients.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
SanDiego#1

I just found this post from Rich on Diastolic Dysfunction--maybe it will be helpful:

To xxx on the work of Drs. Lerner and Cheney and others posted by Rich Van K
04/05/08 08:45 PM
Hi,

As far as I can tell, Dr. Lerner and Dr. Cheney are describing different heart conditions. Dr. Lerner focuses on viral cardiomyopathy that involves incomplete multiplication of Epstein-Barr virus or human cytomegalovirus in the heart muscle cells. He has documented this by biopsy of the heart muscle as well as by blood serum antibody testing and Holter monitor (24-hour recording electrocardiogram). He appears to have good evidence that the viruses are present in the heart muscle cells, but that they do not multiply normally, so that the rate of die-off of the cells is slower than for a runaway viral infection. This type of cardiomyopathy causes a gradual weakening of the heart muscle, and eventually leads to a dilated cardiomyopathy. The cardiac output goes down because the heart muscle is weak on the systolic or output stroke.

Dr. Cheney, on the other hand, describes a diastolic dysfunction, which is caused by an energy shortage in the heart muscle cells, due to too low a rate of production of ATP by the mitochondria. He documents this using advanced echocardiography that is capable of observing the detailed function of the parts of the heart. In this case, the cardiac output goes down because the heart muscle does not relax fast enough to allow enough blood to enter the left ventricle during the diastolic stroke. Dr. Cheney also describes a PFO (patent foramen ovale), and I think that is secondary to the diastolic dysfunction, because the latter changes the pressures in the chambers of the heart, which causes the PFO to be blown open.

I think these represent two different problems that can occur in the heart in CFS. In the situation described by Dr. Lerner, the viruses must be present in the body, and the immune system must be compromised to allow them to infect the heart, but still competent enough to prevent them from multi-plying normally. I would attribute this to glutathione depletion. I might note that Dr. Lerner read my poster paper at the IACFS meeting in January 2007, and he told me that he thought that it made sense. The paper included a description of reactivation of latent viruses and compromise of the immune system as a result of glutathione depletion and the methylation cycle block.

In the situation described by Dr. Cheney, as I wrote earlier, I think that de-pletion of glutathione in the heart muscle cells causes a decrease in the rate of ATP production, which leads to diastolic dysfunction. I don't think that viruses need to be present to cause this situation, but Dr. Cheney may believe that they are responsible for lowering the activation of the anti-oxidant enzymes, which is what he believes is responsible for the lowered rate of ATP production.

In summary, I think Drs. Lerner and Cheney are describing different phenomena in the heart in CFS, but I think both these phenomena result from glutathione depletion and the methylation cycle block.

I also believe that glutathione depletion and the methylation cycle block are at the root of the RNase-L elevation and fragmentation as well as the other immune dysfunctions emphasized by Dr. De Meirleir (though I don't think he agrees with this), and that glutathione depletion is the cause of the rise in peroxynitrite emphasized by Prof. Martin Pall (but he does not agree with this).
Furthermore, I think that chronic Lyme disease involves depletion of glutathione and glutathione peroxidase by the Borrelia bacteria, leading to a methylation block (I don't think the Lyme researchers agree with this, but probably most haven't heard of it yet). I also think that many cases of multiple chemical sensitivity are due to depletion of glutathione in the sustentacular cells of the olfactory epithelium, inside the nasal cavity, which explains why a glutathione nasal spray can bring relief (I haven't discussed this possibility with Dr. Grace Ziem, but I don't think Prof. Pall agrees with it).
I'm currently working on trying to find a link between Dr. Ritchie Shoemaker's biotoxin pathway and the pathogenesis mechanism in the GD-MCB hypothesis. Two candidates that I'm looking at are the effect of glutathione depletion in the pituitary on the production of proopio-melanocortin, from which both ACTH and MSH are produced (note that MSH is low in Dr. Shoemaker's model) and possible reaction between biotoxins and vitamin B12 when glutathione is depleted, so that B12 loses its normal protection (I don't have enough evidence yet to support a connection here).

I would also like to find the link to fibromyalgia, and at this point I'm looking at deficiency of myelin basic protein as a result of the methylation cycle block, and excitotoxicity, which is found in both CFS and FM. I'm considering the possibility that the folate trap that results from the block at methionine synthase frees up glutamic acid, which raises the ratio of glutamate to GABA and produces excitoxicity. The question arises as to why some people have one, some have the other, and some have both. I suspect that genetic variations will turn out to be the answer.
If more people who have pure fibromyalgia turn out to have success with treatment directed at lifting the methylation cycle block, it will give me more confidence that a link can be found between CFS and FM that involves the pathogenetic mechanism I have proposed for CFS.

If all this works out, we will have a "grand unified theory" for all these disorders, which either occur together or have very similar symptomatology. I hasten to add that we are not there yet, and I am probably the only researcher who thinks this approach is likely to work. But time will tell.

Best regards, Rich
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
I have heard of Dr. Bradstreet... I thought he mostly treated autistic children though. Does he treat ME as well? Your CO is definitely not 1.8 or you would be dead... your cardiac index (CI) possibly could be that low - Dr. Cheney says it is in many of his patients.

Dr. Cheney told me he did not know how I was walking around. I had hiked AM before I went into see him. His reply was I was amazing at adapting. Everyone that goes there now has Dias Dysfunction. Looked back on my papers from there says "Cardiac Output 1.8" He also showed me chart where people that had higher CO were dead??? I was devastated. I have tests that need to be done( biopsies) and he says I am taking a chance on any Anesthesia. I can't get any answers here!!!!! So what is the answer for treatment?? All of mine started with Mono, EBV, CMV and long standing Mercury toxicity from Dental office. Neuro symptoms were the first in the beginning.This was 20 yrs. ago.
Dr. Bradstreet treats ME/CFS with the same treatments he uses for Autism. May ck into his theories. He is not too far from me.
Thank you again for your input. I need any informed opinions I can get.!!!

San Diego
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
SanDiego#1

I just found this post from Rich on Diastolic Dysfunction--maybe it will be helpful:


Sushi- Forgot to thank you for the report from Rich. As always my response is." So what treatment is recommended"?
SanDiego#1

I just found this post from Rich on Diastolic Dysfunction--maybe it will be helpful:


I have seen this Video before. Very good. The problem is I think it was made in 2008. Has Nothing changed since then in treatment and research?

San Diego
 
Messages
5
Sushi- Forgot to thank you for the report from Rich. As always my response is." So what treatment is recommended"?

I have seen this Video before. Very good. The problem is I think it was made in 2008. Has Nothing changed since then in treatment and research?

San Diego


I wish I had some better answers for myself, you, and all the rest of us that have this terrible disease. Like I said before, there is not really any treatment (at least that I know of) that specifically for the type of DD found in ME. I think the cardiac output of 1.8 is really not possible and I expect he meant CI and it was a typo. CI is essentially a measure of your cardiac output (CI = CO/body surface area) so it would not be incorrect to say something like, "the patient's cardiac output is low, with a cardiac index of X..."

On the other hand, it is fairly easy to miscalculate CO if the echo tech measures the left ventricular outflow tract (LVOT) slightly off (not really their fault usually because it is changing in size throughout the cardiac cycle). For example a very small difference (a couple mm) in diameter of the LVOT could change the CO by a significant amount.

I don't know if this is the exact formula used by Dr. Cheney's ECHO but you can plug in some numbers and get an idea of how easy it would be to miscalculate CO based on small difference in LVOT diameter: http://echocardiographer.org/Calculators.home.html

As far as research and treatment I believe Dr. Cheney's mainstays of symptom management are unchanged. He continues to do research. He does not claim to have a cure. He very much keeps up with the bleeding edge of ME/CFS research so he is always looking into novel treatments and often tries them out, but just like every other doctor who treats this disease they are just doing the best they can with what they have - it is hard to treat a disease of unknown etiology that is so incredibly complex. My personal opinion is that all of the ME/CFS experts have a small piece of the puzzle and it just hasn't all come together yet.

As far as needing biopsies and anesthesia you should probably talk to Dr. Cheney and ask him exactly what risks he is talking about and then you can weigh the risk/benefits and decide what you think is best. Do you know if he was talking about cardiac risks only, or oxygen related? When given O2 did you stop breathing? People who have had ME for a long time like you sometimes demonstrates signs of chronic hypoxia, much like people with long standing COPD, and there respiratory drive becomes driven by O2 rather than what it should be driven by, CO2. Anyway, what that means is some people with ME (or severe COPD) can potentially stop breathing if given too much oxygen which obviously could be a problem during anesthesia (they are typically liberal with O2 during anesthesia because for 99% of people a little extra O2 is good for them).

Just to elaborate a little on the quote above from Rich (thanks Sushi). Dr. Cheney has found that across the board his patients have longer than normal isovolumetric relaxation times (IVRT) during the cardiac cycle. Also, when his ME patients are administered O2 the IVRT increases even more while in normal people in decreases. This is significant in that IVRT can roughly be inversely correlated to available free energy within the cardiac cells. He has made this correlation because at the cellular level, all of the energy expenditures (using up ATP) occurs during this time (IVRT) to pump the ions that caused the contraction back out again. So, low ATP (energy) → longer it takes to pump ions out → longer IVRT → potential DD.

This doesn't make ANY sense because increased O2 should boost aerobic metabolism and provide increased ATP and decrease IVRT (which is exactly what happens in normal people). In people with ME the opposite occurs... Cheney theorizes that this is because there is something wrong with our ability to deal with the by-products of normal aerobic metabolism (essentially a bunch of toxic substances/free radicals that in normal people are handled easily by a few enzymes) so the body decreases energy production so that all the toxic by-products that we can no longer deal with do not kill us... so that essentially the majority of the problems found in CFS are compensatory.

Sorry for my rambling... I know you have some difficult decisions before you and I wish you the best in making them.
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
I wish I had some better answers for myself, you, and all the rest of us that have this terrible disease. Like I said before, there is not really any treatment (at least that I know of) that specifically for the type of DD found in ME. I think the cardiac output of 1.8 is really not possible and I expect he meant CI and it was a typo. CI is essentially a measure of your cardiac output (CI = CO/body surface area) so it would not be incorrect to say something like, "the patient's cardiac output is low, with a cardiac index of X..."

On the other hand, it is fairly easy to miscalculate CO if the echo tech measures the left ventricular outflow tract (LVOT) slightly off (not really their fault usually because it is changing in size throughout the cardiac cycle). For example a very small difference (a couple mm) in diameter of the LVOT could change the CO by a significant amount.

I don't know if this is the exact formula used by Dr. Cheney's ECHO but you can plug in some numbers and get an idea of how easy it would be to miscalculate CO based on small difference in LVOT diameter: http://echocardiographer.org/Calculators.home.html

As far as research and treatment I believe Dr. Cheney's mainstays of symptom management are unchanged. He continues to do research. He does not claim to have a cure. He very much keeps up with the bleeding edge of ME/CFS research so he is always looking into novel treatments and often tries them out, but just like every other doctor who treats this disease they are just doing the best they can with what they have - it is hard to treat a disease of unknown etiology that is so incredibly complex. My personal opinion is that all of the ME/CFS experts have a small piece of the puzzle and it just hasn't all come together yet.

As far as needing biopsies and anesthesia you should probably talk to Dr. Cheney and ask him exactly what risks he is talking about and then you can weigh the risk/benefits and decide what you think is best. Do you know if he was talking about cardiac risks only, or oxygen related? When given O2 did you stop breathing? People who have had ME for a long time like you sometimes demonstrates signs of chronic hypoxia, much like people with long standing COPD, and there respiratory drive becomes driven by O2 rather than what it should be driven by, CO2. Anyway, what that means is some people with ME (or severe COPD) can potentially stop breathing if given too much oxygen which obviously could be a problem during anesthesia (they are typically liberal with O2 during anesthesia because for 99% of people a little extra O2 is good for them).

Just to elaborate a little on the quote above from Rich (thanks Sushi). Dr. Cheney has found that across the board his patients have longer than normal isovolumetric relaxation times (IVRT) during the cardiac cycle. Also, when his ME patients are administered O2 the IVRT increases even more while in normal people in decreases. This is significant in that IVRT can roughly be inversely correlated to available free energy within the cardiac cells. He has made this correlation because at the cellular level, all of the energy expenditures (using up ATP) occurs during this time (IVRT) to pump the ions that caused the contraction back out again. So, low ATP (energy) → longer it takes to pump ions out → longer IVRT → potential DD.

This doesn't make ANY sense because increased O2 should boost aerobic metabolism and provide increased ATP and decrease IVRT (which is exactly what happens in normal people). In people with ME the opposite occurs... Cheney theorizes that this is because there is something wrong with our ability to deal with the by-products of normal aerobic metabolism (essentially a bunch of toxic substances/free radicals that in normal people are handled easily by a few enzymes) so the body decreases energy production so that all the toxic by-products that we can no longer deal with do not kill us... do that essentially the majority of the problems found in CFS are compensatory.

Sorry for my rambling... I know you have some difficult decisions before you and I wish you the best in making them.

Sushi- Once again I thank you for your response. I have looked back on my report from Cheney. Written and typed and one says Cardiac Index and the other says Cardiac output. I would assume since everyone looks at me like I am crazy when I show them his Cardiac output it is the Index instead. I will also send you the tests results I have.
It was not Negalase that was so high-It was IL-6.. Don't have results in front of me. I am weary from worrying about the biopsy and wanted to get it before Jan 1. However Cheney will not be available until after the first of the year.I would hope the Dr. will listen to him if he agrees to call them. I had previous biopsy in May 2012 and did fine. I was wiped out for about 2 weeks but tolerated procedure-this was before I went back into see Cheney.I did have a Heart Cath last Dec. Cardiologist said was fine. Some blockage in LV but not enough to require intervention.

Thank you again for your kindness and time.

San Diego.

San Diego
I know you have health issues just as I do. I don't want to wear you out trying to help me. However, You have already.!
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Sushi- Once again I thank you for your response. I have looked back on my report from Cheney. Written and typed and one says Cardiac Index and the other says Cardiac output. I would assume since everyone looks at me like I am crazy when I show them his Cardiac output it is the Index instead. I will also send you the tests results I have.
It was not Negalase that was so high-It was IL-6.. Don't have results in front of me. I am weary from worrying about the biopsy and wanted to get it before Jan 1. However Cheney will not be available until after the first of the year.I would hope the Dr. will listen to him if he agrees to call them. I had previous biopsy in May 2012 and did fine. I was wiped out for about 2 weeks but tolerated procedure-this was before I went back into see Cheney.I did have a Heart Cath last Dec. Cardiologist said was fine. Some blockage in LV but not enough to require intervention.

Thank you again for your kindness and time.

San Diego.

San Diego
I know you have health issues just as I do. I don't want to wear you out trying to help me. However, You have already.!

Cmedme---Thank you a great post. I am so grateful for all the informed answers I have gotten. Many of you are in my boat-so it is going beyond the call of duty to help me.

San Diego
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Thanks Judi,
Betaine HCL was the first thing and it made such a huge difference to my stomach. Rocking chair for blood circulation. Lots of little things like that. Long time ago.
 

minimus

Senior Member
Messages
140
Location
New York, NY
I have been a Cheney patient since 2001. I don't post very often on Phoenix Rising. I have done quite well because of his protocol. I initially saw him in early 2001 about 2 1/2 years after becoming ill. I was just barely able to work, holding on because my wife just had a baby, we had no money, and my boss was sympathetic to my plight.

Many years ago, Carol Sieverling wrote quite a few articles about Cheney and his protocol for immunesupport.com. Now she participates in a Yahoo forum that is exclusive to Cheney patients. So, that may explain why little is known about Cheney's protocol these days and why few patients visit this forum. (To some extent, a lot of patients on Phoenix Rising seem to be crying out in the wilderness for insight. As a Cheney patient, I do not feel like I am thrashing about in the dark for help...)

Yes, Cheney is expensive. He charges about $700 per hour for his time. At this point, he only sees patients three days a week, one patient a day. When I see him for my annual visit, I tell him my maximum budget and he sticks to that. That is typically $3000, one time per year. If I were living on SSI, that would be too much money. But Cheney's protocol has allowed me to keep working for the last 12 years as a portfolio manager. That has made the cost of seeing Cheney a very good investment at least for me, that has paid off well in terms of quality of life and financial security. Prior to seeing Cheney, I first saw Derek Enlander, Susan Levine, and Leo Galland in New York. They were all inexpensive but essentially threw up their hands and said there was little more they could do to help me. (I like Susan Levine quite a lot, by the way...I just don't think she has much to offer besides a diagnosis and assistance in winning disability claims. Enlander confidently promised recovery was on the way and then delivered zero improvement.)

Cheney helped me on two fronts. First, he offered a sleep protocol that helped to steady me in the early years of illness. He prescribes two or three medicines used in small doses in combination for sleep. He also put me on high-dose hydroxycobalamine and magnesium sulfate injections. That initial protocol led to a dramatic improvement in my sleep, a gradual lifting of severe brain fog, followed by big gains in general cognitive function. Second, Cheney began to offer a "cell-signalling factor" protocol about five years ago. His CSF's bare some passing resemblance to Nexavir/Kutapressin, but in my experience work far better. On the CSF's, my energy level has improved and has become much more stable. I don't experience severe push-crash episodes any more. I am not a high-energy person by any means, and certainly count myself as still having CFS, but I am a lot closer to normal than I was ten years ago.

I know some people feel that Cheney is only in this for money. He almost lost his house to foreclosure when he went on disability for heart failure in 2003. He has told me that he cannot afford to retire. I don't get the impression that he has socked away millions in his bank account off the backs of his CFS patients.

In any case, I am very grateful to Cheney. I know a lot of his patients are quite loyal. However, some do not seem to benefit as much as I have and they move on. What I would say is this: if you are not too far into this illness and are desperate to continue working if at all possible, don't dismiss Cheney as a charlatan -- he could actually turn out to be a godsend who can shed some light on your illness and lead you back to some semblance of health.
 
Messages
5
Dr. Cheney is not "all about the money" as others have stated. At a cursory view he seems very expensive as mentioned above, but you have to consider what you are getting compared to other doctors. He typically only sees 1 patient per day. His is going to evaluate you extensively and answer any questions you have for a couple hours at least (however long you want - you can tell him your budget and ahead of time and he will do his best to stick to that). Unless you specifically do not want it, you will get a very extensive echo that does not cost any extra other than the hourly rate. If you have ever gotten a regular echo look at how much the cardiologist charged your insurance company for the exam itself and then to read it and write the report... it will be in the thousands, and they will not have even looked for (and therefore not seen) what is actually wrong with your heart - low cardiac output and diastolic dysfunction. Seeing Dr. Cheney will grant you access to his cell signaling factors which are relatively inexpensive (depending on how fast you use them, no more than $30/month for each type) that many patients say has helped more than anything they have ever taken. Also, I would be really surprised if there was anyone in the world who understood the cardiac and energetic (metabolic) pathophysiology of this disease better than Dr. Cheney.

Compare that to a "typical" doctor who is going to see you for about 10-15 minutes if you are lucky and charge your insurance company anywhere from $100-300 in addition to your co-pay for that paltry 10-15 minute visit. Then, he/she is going to forget about you as they see the rest of the 40 patients they have scheduled to see that day. Yeah, you aren't paying much for it up front, but you are in your insurance payments, and you probably aren't getting much out of it either.

I do not want this post to be inflammatory... I just wanted to say that, yes, you are going to pay a lot out of pocket to see Dr. Cheney (and everyone who is considering seeing him should know that), but for many people, it is a worthwhile investment. Also, in an attempt to balance some of the comments that I have read on this forum regarding Cheney and money, compare the amount Dr. Cheney is bringing in total (remember he has employees to pay, an office lease, licensing/insurance to cover, etc.) seeing 3 patients per week for 3-6 hours a day to a typical doctor who is charging a couple hundred dollars per patient (plus extra for any procedures or diagnostic studies like an echo) and seeing 40 patients per day, 5-6 days a week. If he were "all about the money" he would have forgotten about CFS/ME patients a long time ago and continued being a "typical" doctor.
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
I have been a Cheney patient since 2001. I don't post very often on Phoenix Rising. I have done quite well because of his protocol. I initially saw him in early 2001 about 2 1/2 years after becoming ill. I was just barely able to work, holding on because my wife just had a baby, we had no money, and my boss was sympathetic to my plight.

Many years ago, Carol Sieverling wrote quite a few articles about Cheney and his protocol for immunesupport.com. Now she participates in a Yahoo forum that is exclusive to Cheney patients. So, that may explain why little is known about Cheney's protocol these days and why few patients visit this forum. (To some extent, a lot of patients on Phoenix Rising seem to be crying out in the wilderness for insight. As a Cheney patient, I do not feel like I am thrashing about in the dark for help...)

Yes, Cheney is expensive. He charges about $700 per hour for his time. At this point, he only sees patients three days a week, one patient a day. When I see him for my annual visit, I tell him my maximum budget and he sticks to that. That is typically $3000, one time per year. If I were living on SSI, that would be too much money. But Cheney's protocol has allowed me to keep working for the last 12 years as a portfolio manager. That has made the cost of seeing Cheney a very good investment at least for me, that has paid off well in terms of quality of life and financial security. Prior to seeing Cheney, I first saw Derek Enlander, Susan Levine, and Leo Galland in New York. They were all inexpensive but essentially threw up their hands and said there was little more they could do to help me. (I like Susan Levine quite a lot, by the way...I just don't think she has much to offer besides a diagnosis and assistance in winning disability claims. Enlander confidently promised recovery was on the way and then delivered zero improvement.)

Cheney helped me on two fronts. First, he offered a sleep protocol that helped to steady me in the early years of illness. He prescribes two or three medicines used in small doses in combination for sleep. He also put me on high-dose hydroxycobalamine and magnesium sulfate injections. That initial protocol led to a dramatic improvement in my sleep, a gradual lifting of severe brain fog, followed by big gains in general cognitive function. Second, Cheney began to offer a "cell-signalling factor" protocol about five years ago. His CSF's bare some passing resemblance to Nexavir/Kutapressin, but in my experience work far better. On the CSF's, my energy level has improved and has become much more stable. I don't experience severe push-crash episodes any more. I am not a high-energy person by any means, and certainly count myself as still having CFS, but I am a lot closer to normal than I was ten years ago.

I know some people feel that Cheney is only in this for money. He almost lost his house to foreclosure when he went on disability for heart failure in 2003. He has told me that he cannot afford to retire. I don't get the impression that he has socked away millions in his bank account off the backs of his CFS patients.

In any case, I am very grateful to Cheney. I know a lot of his patients are quite loyal. However, some do not seem to benefit as much as I have and they move on. What I would say is this: if you are not too far into this illness and are desperate to continue working if at all possible, don't dismiss Cheney as a charlatan -- he could actually turn out to be a godsend who can shed some light on your illness and lead you back to some semblance of health.


Mini- Thank you for your comments. How long has it been since you have seen Cheney?
I have been a Cheney patient since 2001. I don't post very often on Phoenix Rising. I have done quite well because of his protocol. I initially saw him in early 2001 about 2 1/2 years after becoming ill. I was just barely able to work, holding on because my wife just had a baby, we had no money, and my boss was sympathetic to my plight.

Many years ago, Carol Sieverling wrote quite a few articles about Cheney and his protocol for immunesupport.com. Now she participates in a Yahoo forum that is exclusive to Cheney patients. So, that may explain why little is known about Cheney's protocol these days and why few patients visit this forum. (To some extent, a lot of patients on Phoenix Rising seem to be crying out in the wilderness for insight. As a Cheney patient, I do not feel like I am thrashing about in the dark for help...)

Yes, Cheney is expensive. He charges about $700 per hour for his time. At this point, he only sees patients three days a week, one patient a day. When I see him for my annual visit, I tell him my maximum budget and he sticks to that. That is typically $3000, one time per year. If I were living on SSI, that would be too much money. But Cheney's protocol has allowed me to keep working for the last 12 years as a portfolio manager. That has made the cost of seeing Cheney a very good investment at least for me, that has paid off well in terms of quality of life and financial security. Prior to seeing Cheney, I first saw Derek Enlander, Susan Levine, and Leo Galland in New York. They were all inexpensive but essentially threw up their hands and said there was little more they could do to help me. (I like Susan Levine quite a lot, by the way...I just don't think she has much to offer besides a diagnosis and assistance in winning disability claims. Enlander confidently promised recovery was on the way and then delivered zero improvement.)

Cheney helped me on two fronts. First, he offered a sleep protocol that helped to steady me in the early years of illness. He prescribes two or three medicines used in small doses in combination for sleep. He also put me on high-dose hydroxycobalamine and magnesium sulfate injections. That initial protocol led to a dramatic improvement in my sleep, a gradual lifting of severe brain fog, followed by big gains in general cognitive function. Second, Cheney began to offer a "cell-signalling factor" protocol about five years ago. His CSF's bare some passing resemblance to Nexavir/Kutapressin, but in my experience work far better. On the CSF's, my energy level has improved and has become much more stable. I don't experience severe push-crash episodes any more. I am not a high-energy person by any means, and certainly count myself as still having CFS, but I am a lot closer to normal than I was ten years ago.

I know some people feel that Cheney is only in this for money. He almost lost his house to foreclosure when he went on disability for heart failure in 2003. He has told me that he cannot afford to retire. I don't get the impression that he has socked away millions in his bank account off the backs of his CFS patients.

In any case, I am very grateful to Cheney. I know a lot of his patients are quite loyal. However, some do not seem to benefit as much as I have and they move on. What I would say is this: if you are not too far into this illness and are desperate to continue working if at all possible, don't dismiss Cheney as a charlatan -- he could actually turn out to be a godsend who can shed some light on your illness and lead you back to some semblance of health.

Mini- Would you contact me through Conversations? Private? When was the last time you saw Cheney?
I was there 5 months ago. I have been a patient for over 10 years.

Thanks,

SanDiego#1
Mini- Would you contact me through Conversations? Private
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Dr. Cheney is not "all about the money" as others have stated. At a cursory view he seems very expensive as mentioned above, but you have to consider what you are getting compared to other doctors. He typically only sees 1 patient per day. His is going to evaluate you extensively and answer any questions you have for a couple hours at least (however long you want - you can tell him your budget and ahead of time and he will do his best to stick to that). Unless you specifically do not want it, you will get a very extensive echo that does not cost any extra other than the hourly rate. If you have ever gotten a regular echo look at how much the cardiologist charged your insurance company for the exam itself and then to read it and write the report... it will be in the thousands, and they will not have even looked for (and therefore not seen) what is actually wrong with your heart - low cardiac output and diastolic dysfunction. Seeing Dr. Cheney will grant you access to his cell signaling factors which are relatively inexpensive (depending on how fast you use them, no more than $30/month for each type) that many patients say has helped more than anything they have ever taken. Also, I would be really surprised if there was anyone in the world who understood the cardiac and energetic (metabolic) pathophysiology of this disease better than Dr. Cheney.

Compare that to a "typical" doctor who is going to see you for about 10-15 minutes if you are lucky and charge your insurance company anywhere from $100-300 in addition to your co-pay for that paltry 10-15 minute visit. Then, he/she is going to forget about you as they see the rest of the 40 patients they have scheduled to see that day. Yeah, you aren't paying much for it up front, but you are in your insurance payments, and you probably aren't getting much out of it either.

I do not want this post to be inflammatory... I just wanted to say that, yes, you are going to pay a lot out of pocket to see Dr. Cheney (and everyone who is considering seeing him should know that), but for many people, it is a worthwhile investment. Also, in an attempt to balance some of the comments that I have read on this forum regarding Cheney and money, compare the amount Dr. Cheney is bringing in total (remember he has employees to pay, an office lease, licensing/insurance to cover, etc.) seeing 3 patients per week for 3-6 hours a day to a typical doctor who is charging a couple hundred dollars per patient (plus extra for any procedures or diagnostic studies like an echo) and seeing 40 patients per day, 5-6 days a week. If he were "all about the money" he would have forgotten about CFS/ME patients a long time ago and continued being a "typical" doctor.

CMED-Please contact me in Conversations (Private). You have interesting comments.
SanDiego#1