Reversing Diastoylic Cardiac Dysfunction-Running Antelope?

Discussion in 'Fibromyalgia Main Forum' started by sunscaper, Sep 21, 2009.

  1. sunscaper

    sunscaper New Member

    I read in one of your posts that Cheney has reversed this for you...Please, how did he do this? I am in really bad condition with Diastoylic Dysfunction, which has seems to be getting worse for me..lung function is getting much worse...I think that I am headed towards Cardiac Failure..PLEASE, I need your help!

  2. TigerLilea

    TigerLilea Active Member

    You really should get in and see a cardiologist if you are that bad. Who diagnosed your diastoylic dysfunction?
  3. gapsych

    gapsych New Member

    I agree with TigerLilea. You need to see a cariologist ASAP. Are you seeing one now?

    Take care.

  4. TigerLilea

    TigerLilea Active Member

    Hi Anchor - If indeed we do have diastolic cardiomyopathy, then a good cardiologist should be able to find the problem. I read somewhere recently that the way in which Dr. Cheney performs the test almost guarantees a positive result. It is similar to a provoked mercury test; guaranteed the results will be positive - every time. I just cannot believe that a trained cardiologist is incapable of finding diastolic cardiomyopathy in CFS patients if it were truly present.
  5. sunscaper

    sunscaper New Member

    I was diagnosed with Diastoylic Dys. by a regular cardiologist..but I have had CFIDS for about 36 I am towards end stage chest pressure is so bad I feel like I am slowly suffocating, but then, I do live at 8900 altitude, and that makes a big difference, so I will have to move to a lower altitude.

    I have been placed on 24 hour oxygen, because of hypoxia, but it does not seem to help, much, and I wondered if oxygen toxicity is the problem, as per, Dr. Cheney's theory. I nearly collapsed during a Stress Echo, and had PEM for a week, afterwards.<They thought I had three blockages to the arteries of the heart, based on Stress Echo.BR>

    However, regular cardiologists do not have a good treatment that will reverse DD, so I wanted to know how Dr. Cheney is able to reverse this disease. ME can and does end in Heart Failure, for a small percentage.
    [This Message was Edited on 09/22/2009]
    [This Message was Edited on 09/22/2009]
  6. SnooZQ

    SnooZQ New Member

    Sorry, no experience w/Cheney's protocol here.

    Have you researched L-carnitine?

    Best wishes.
  7. sunscaper

    sunscaper New Member

    Yes, L-Carnitine, along with the other MITO supplements helps, but I am getting, to the point, that nothing seems to make a big difference.
  8. TigerLilea

    TigerLilea Active Member

    I'd be curious to know if you took 5,000 people, 2,500 with CFS and the other 2,500 without CFS, doing the testing Dr. Cheney's way, would there be different results for the two groups, or would everyone show the same result??
  9. mbofov

    mbofov Active Member

    The test Anchor is talking about is an impedance cardiography. It's performed using a machine called a BioZ. It is relatively new technology and many cardios are unaware of this. The machine and test are widely available at cardiologist offices, however. It does pick up abnormalities which do not show up on standard cardio tests. I've had it done twice, and each time it showed a level of cardiomyopathy. The test measures vascular resistance. My doctor has me taking hawthorn (originally tried digitoxin [not digoxin] but could not tolerate it), d-ribose, l-carnitine, magnesium, CoQ10.

    Here are a couple of articles you may find interesting: - "Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome"

    and - "ATP Production and Heart Function in Chronic Fatigue Syndrome"

  10. mbofov

    mbofov Active Member

    First, this is just anecdotal information. I'm not suggesting you do this in lieu of seeing your doctor. Having said that, I've read a lot about cayenne being very good for heart health, and hawthorn as well, but cayenne in particular. I'd suggest googling it. It's supposed to have lots of other health benefits as well. I tried taking it once. Unfortunately, it made me detox so had to stop. But I'd like to try it again sometime.

    I've had the impedance cardiography done, showing some cardiomyopathy, and am taking d-ribose, hawthorn, l-carnitine, magnesium and co-q10 (as well as a bunch of other stuff), those are the major ones for my heart.

    It does sound like your situation is different, and much more severe. Anyways, check out cayenne. It is supposed to increase the pumping action of the heart while at the same increasing blood flow - it's supposed to ease the burden on the heart.

    Take care -

  11. RunningAntelope

    RunningAntelope New Member

    I will be brief (if possible) in the interest of time and try to post more later. Consult this link for more info. on cardiac insufficiency and streaming video from recent Dr. Cheney presentations on diastolic dysfunction and treatment (incidentally, I visited both Drs. Cheney and Lerner and decided to pursue Dr. Cheney because he has, in my opinion, a firmer grasp of the pathophysiology of this illness and more experience treating patients than most of his colleagues. He also has a statistically significant diagnostic tool by which he can evaluate not only whether or not a patient fits the CFIDS mold, without exception, but also the degree of disability).

    First of all, I hope that you are not exercising and are resting and mitigating stress as much as possible in your life. Dr. Cheney has a new website, and you might want to find a doctor who has access to this site for the most up-to-date information (highly recommended). What seemed to help me initially was nexavir gel, hawthorne (heart function) , CoQ10, hydroxy-B12 injections, and magnesium/taurine injections (which can normalize arrhythmia). I also took isoprinosine (immune-modulating) by prescription, but have since switched to the much cheaper and easily obtained inosine. Originally I was on acetyl-L-carntine, but it appears to be energy-depriving, at least at first blush. I am now on a proprietary systemic cell signaling factors protocol (which I will admit has been enormously helpful), and I also take a multi and eat a damn fine diet, mostly raw with lean meats, non-gluten carbs, loads of veggies and modest amounts of fruit. I also take wormwood and artesunate for shifting the "redox" state to fight pathogens.

    Cheney's approach seems to be cell-signaling factors for reigniting systemic functionality and the enzymes involved in quenching free radical production as a byproduct of oxygen toxicity, a stringent diet geared toward 50%+ raw food and minimizing highly processed versions of fructose especially and food allergens (I've always been curious by posts here that say they have "cured themselves" with diet, though Cheney has said that diet alone will not "cure" you if you really have this illness, but a poor diet will certainly make you much worse because of gut dysbiosis, supported by Kenny DeMeilier's hypothesis on H2S and lactate-producing bacteria), and evaluating stem cells as a possible adjunct therapy to address phenotypic and possibly "genotypic corrution" in this disease.

    He is way ahead of his peers (though methylation block, environmental factors like food and mold, gut dysbiosis, etc all play into the model). It would take me all week and many pages of writing to explain the elaborate pathophysiology that he has worked out. He spells it out in his website. As I said on the other thread, do a search by my username going back two or three years for more info on this diastolic dysfunction.

    [This Message was Edited on 09/22/2009]
    [This Message was Edited on 09/22/2009]
  12. AuntTammie

    AuntTammie New Member

    I've read a lot about diastolic cardiomyopathy, POTS, and other issues that many of us get.....When I read each thing separately it makes sense, but I cannot figure out how the various things fit together or if they never happen together or I wonder if it's possible to have diastolic cardiomyopathy and POTS at the same time and how they effect each other, if it's possible to be hyperventilating (chronic or acute) along with either of these and how that impacts the other things, if asthma impacts any of these, and well how the theory about oxygen toxicity impacts any of these (honestly, I do not really understand the oxygen toxicity theory either)
  13. Slayadragon

    Slayadragon New Member

    Where do you live?

  14. skeptik2

    skeptik2 Member

    The BioZ machine is in various drs offices.

    Call Cardiodynamics 1800 778 4825, give them your ZIP, and they will
    tell you which office(es) in your area have them. They only take about 30
    minutes, and cost about $120. Many drs will give them at a lower cost
    if you tell them it would be a hardship for you to pay that much.

    Do try to get one, and maybe a blood volume test and try to find a good
    cardiologist with any results. They are very aware of Diastolic heart
    failure over the past two years; search PubMed and MedPageNow sites.

    Best to you,
  15. sunscaper

    sunscaper New Member

    To Lisa,

    High in the mountains of Colorado...when I go higher in altitude, I do get much sicker...when I went to Denver, I felt much less chest pressure..I would really like to stay at around 5000 altitude, as otherwise, it suits my other problems with CFIDS. However, a Respiratory therapist told me I may need to go to sea level, as my lung function may become even more severe.

    TO MARY,
    I think that Hawthorn has made a difference..but have not noticed Cayenne helping, but may try, again.

    TO RUNNINGANTELOPE...I have always believed that Cheney has described my CFIDS symptoms and disease process to a if you could supply me any more info as to what has made the difference in Diastoylic Function, I would REALLY LIKE TO KNOW.

    I am going for a lot more testing to determine if I have additional lung/heart /rhematological/endocrinological diseases, in the next few I need to rest, but THANKS TO ALL WHO HAVE RESPONDED TO MY INQUIRY..


    Has anyone improved with treatment of Mycoplasma or Chlymidia Pneumonaie? (I have wondered if this has contributed to my lung functioning problems)[This Message was Edited on 09/22/2009]
  16. richvank

    richvank New Member

    Hi, AuntTammie.

    I can give you my version of how all these things fit together. I should mention that it's a matter of public record (from his talk in Virginia) that Dr. Cheney and I disagree about some things, but it's also true that we agree about a lot of other things! I have a good, ongoing relationship with him, and I appreciate him very much, even though we disagree about some technical things. I will try not to distort his views in the following discussion.

    First, what is diastolic dysfunction? Diastolic dysfunction means that the heart muscle does not relax fast enough during the phase of the heartbeat cycle when it is supposed to relax in order to open up the left ventricle (large chamber on the left side of the heart) fast enough to allow it to fill with enough blood in the time it has before the next contraction (systolic phase). If the heart muscle relaxes too slowly, the amount of blood drawn in will be smaller than normal, and thus the amount the heart pumps out (stroke volume) will be too low, and the amount it pumps out in a minute (cardiac output) will also be too low. This of course affects the body in general, because all the cells of the body depend on receiving oxygen and nutrients from the blood, as well as dumping their "exhaust" into the blood to be carried away.

    O.K., what causes diastolic dysfunction? (I think Dr. Cheney would say that there is an energy crisis in the heart, and he would assign it to a lowered value of the Gibbs free energy. I agree that there is an energy crisis, but I don't see how the Gibbs free energy applies.) In order for the heart muscle to relax as rapidly as it should, the rate of production of ATP by the mitochondria (little power plants) of the heart muscle cells must be high enough to pump out calcium fast enough to relax the muscle fibers and to supply ATP to power the next contraction. So diastolic dysfunction is caused by a problem in the mitochondria, which is called mitochondrial dysfunction.

    What causes the mitochondrial dysfunction? In my hypothesis, it's caused by glutathione depletion. I think Dr. Cheney's view is that there is a problem with the enzymes that normally deal with oxidative stress, namely glutathione peroxidase, superoxide dismutase and catalase. I think he suspects that a virus has inhibited these enzymes. He does seem to agree that the problem is in the mitochondria, though.

    What are the consequences of diastolic dysfunction? Well, there isn't enough blood being pumped out of the heart to take care of all the body's needs for blood. So it has to ration the blood flow, and certain organs (such as the skin) don't get very much blood flow, in order to make sure the vital organs do, so that the person stays alive as long as possible.

    One of the big challenges is to get enough flow to the brain so the person doesn't pass out. This is more difficult when standing, because the heart has to pump against gravity to get it there. In a normal person, adjustments are made when the person stands up to prevent too much blood from going to the legs. However, in CFS, this often doesn't work too well, because it depends on the normal function of the HPA axis and the autonomic nervous system, which have problems in CFS. So this gives rise to orthostatic intolerance in the form of POTS or orthostatic hypotension, which involve a rapid heart rate or low blood pressure, respectively.

    Something that compounds these problems in CFS is that the total volume of blood in the body is often much less than it should be. The reason for this is that too much water is taken from the blood and excreted in the urine by the kidneys. The reason they do this is that they are not receiving enough of the hormone called arginine vasopressin, or antidiuretic hormone. This hormone is normally made in the hypothalamus (part of the brain), passes to the pituitary gland, and is secreted into the blood from there. In my hypothesis, the reason for the low hormone output is glutathione depletion in the hypothalamus.

    O.K., now what about hyperventilation and asthma? These are not usually present in CFS, but they are in some cases. Asthma can be caused by glutathione depletion in the bronchial tubes. Hyperventilation can be a response to having asthma, and it has been suggested that it can also be a cause of asthma. Hyperventilation lowers the concentration of carbon dioxide in the blood, and thus shifts the pH of the blood in the alkaline direction, because carbon dioxide normally forms carbonic acid in the blood. In CFS, the carbon dioxide production by the cells is lower than normal, because of the mito dysfunction. Mitochondria normally use oxygen and produce carbon dioxide and water as exhaust products. So hyperventilation would make this situation worse, and the body cannot tolerate shifting the pH too far in either direction from the normal value in the blood of pH 7.4. The usual situation in CFS is that the person's breathing is slowed and shallowed, because the respiratory center in the brain stem, which controls breathing, attempts to raise the too-low level of carbon dioxide this way.

    Now, what about oxygen toxicity? Dr. Cheney finds with his echocardiography measurements on people with CFS that if he gives them more oxygen, using a mask, their diastolic dysfunction, at least on a short time scale, becomes worse. This is the origin of his statements that these patients are "toxic to oxygen." What is going on here? I'll give you my hypothesis. As I mentioned above, the mitochondria are not functioning properly. This is true in the heart, but also in other cells in the body, including the skeletal muscle cells and the cells of the nervous system. An important aspect of their dysfunction is that they cannot deal with oxidizing free radicals as well as they should be able to. In my view, it is because glutathione is depleted. I think Dr. Cheney's view is that the antioxidant enzymes mentioned above are inhibited. In any case, it is known that adding more oxygen than the mitochondria can use will worsen the oxidative stress by producing more oxidizing free radicals. This will further slow the production of ATP by the mitochondria, and that will worsen the diastolic dysfunction.

    O.K., what can be done about all of this? My hypothesis is that treating to lift the methylation cycle will allow glutathione to come up, and that will improve the function of the mitochondria, raising the production of ATP, and working to correct the diastolic dysfunction. It will also raise the production of ACTH, correcting the problems in the HPA axis. It will raise the production of antidiuretic hormone, stopping the wasting of water into the urine, and restoring normal blood volume, correcting POTS and OH. It will raise the rate of production of carbon dioxide by the mitochondria, correcting the blood pH and restoring normal breathing. It will repair the antioxidant system, getting rid of the oxygen toxicity. It will correct some cases of asthma.

    I might mention that Dr. Cheney believes that the methylation cycle block is not the primary issue, but in fact is a compensation that they cells make because of a more fundamental issue somewhere else. He believes that this more fundamental issue is related to oxygen handling. He believes that lifting the methylation cycle block would make things worse. I'm not sure how he understands the positive results of the clinical study in which we found that lifting the methylation cycle block produced improvements in symptoms, including overall energy.

    Dr. Cheney believes that giving people with CFS methylcobalamin and FolaPro is a "dangerous" thing to do, based on short-term echocardiography measurements. On the other hand, lots of people are reporting long-term benefits from this. So we have some things to sort out. My own view is that his measurements that last a couple of minutes in the clinic do not reflect the biochemistry of substances that occurs over longer time spans, which actually produces benefits.

    Dr. Cheney is treating diastolic dysfunction by using extracts made from certain organs from certain animals. He believes that cell signalling factors in these extracts are responsible for the improvements that are produced. He is also trying stem cell therapy in addition, and so far the results sound pretty good.

    I suspect that the extracts may also contain glutathione and other antioxidants, and they may be contributing to the improvements. As I understand it, these extracts have not been chemically analyzed, and they likely contain a wide variety of low molecular weight substances, so it is difficult to say for sure which ones are providing the observed benefits. In any case, I'm rooting for Dr. Cheney and his patients! Let's get people well, and then we'll sort out our differences in the theory.

    I hope this helps.

    Best regards,


    [This Message was Edited on 09/22/2009]
  17. ulala

    ulala New Member

    info. Do you have to get the proprietary systemic cell signaling factors from Dr. Cheney? Is there anyone selling them? Can you give us the name of them and what is in them? Thanks again for taking the time to share this great info!
  18. AuntTammie

    AuntTammie New Member

    Wow, thanks so much for the explanation! That really helps a lot to clarify things. I am so glad that you are on this board, and are working to help all of us PWCs. (and btw, I mentioned asthma, not bc it is related to the ME/CFS, but bc I have had it all my life, and I was pretty sure that it has been exacerbating some of the issues that I now have that are due to the CFS).
  19. AuntTammie

    AuntTammie New Member

    Thanks for your response. I hope that you are doing at least somewhat better with the NMH issues. That sounds pretty rough. If you haven't seen it, Rich wrote a response to me that explains this stuff really well.
  20. sunscaper

    sunscaper New Member

    Dear Rich,

    Although I cannot comprehend all that you say, as my problems are too excessive, now, I want you to know that I was one of the ones who, initially, had severe reactions to the Basic 5 Protocol, but went back to it, later..I must say that your protocol has helped me more than any other, and you contribute so much to our community. I wish that you could be cloned!

    Has anyone else developed RHUEMATOID ARTHRITIS, Vasculitis, etc. as a result of having other autoimmmune diseases with CFIDS??? new doctor thinks that I am developing Rhuematoid Arthritis (and I think she is right, because it appears that I have a Rhuematoid Nodule). My mother died with one of the worst cases of RA, Vasculitis, Peripheral Neuropathy seen in Twenty years, by a Mayo Clinic physician, according to him.[This Message was Edited on 09/23/2009]
    [This Message was Edited on 09/23/2009]