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

Discussion in 'ME/CFS Doctors' started by SanDiego#1, Nov 15, 2012.

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He is in the San Francisco area--Mountain View.

    Sushi
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    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
  5. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  6. cmedme

    cmedme

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    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 likes this.
  7. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  8. cmedme

    cmedme

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    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.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SanDiego#1

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

    taniaaust1, alice and SanDiego#1 like this.
  10. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  11. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  12. cmedme

    cmedme

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    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.
    Sidereal, Sushi, SanDiego#1 and 2 others like this.
  13. SanDiego#1

    SanDiego#1 SanDiego#1

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    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.!
  14. SanDiego#1

    SanDiego#1 SanDiego#1

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    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
  15. judi

    judi

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    Hi UKXMRV,

    Could you share with me what some of those simple things are?

    Thanks
    Judi

  16. ukxmrv

    ukxmrv Senior Member

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    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.
  17. minimus

    minimus

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    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.
    taniaaust1 and ggingues like this.
  18. cmedme

    cmedme

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    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.
    ggingues likes this.
  19. SanDiego#1

    SanDiego#1 SanDiego#1

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    Mini- Thank you for your comments. How long has it been since you have seen Cheney?
    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
  20. SanDiego#1

    SanDiego#1 SanDiego#1

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

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