repairing damage already done by retrovirus

Discussion in 'Fibromyalgia Main Forum' started by rausten, Nov 30, 2009.

  1. rausten

    rausten New Member

    I have had ME/CFS since 1994. I just learned recently that I am now headed into a form of congestive heart failure. From some of the docs' posts it appears that mitochondrial dysfunction may be at the base of the heart issue as well a few other bugaboos. So if the retrovirus is indeed a culprit and can be eliminated, what about the damage already done? What will the prognosis be for those of us who have had this for umpteen years and now find ourselves facing a shortened life span?
  2. ladybugmandy

    ladybugmandy Member

    rausten..i am really sorry about the CHF. i have had this since 1993 and have no idea what damage i have but i think i have a huge amount since i can barely move.

    i think our body has some capacity to heal itself but i do not know how much.

    all we can do is stick to whatever meds they give us and try to keep healthy...

    this is a nightmare, i know.

    i keep wondering if there is a bigger reason for this...or is it just because we were in the wrong place at the wrong time.

  3. RunningAntelope

    RunningAntelope New Member

    Try to get into see Dr. Paul Cheney asap. Having once worked in a cardiology clinic and been a former competitive marathon runner (being intimately "in tune" with my heart), I could feel something wrong there about seven years into the illness when it really started going south. I started researching mitochondrial myopathy and cardiomyopathy and CFIDS, which led me to both Drs. Lerner and Cheney (and obvious familiarity with the work of Drs. Myhill and Sinatra) ultimately. Dr. Cheney has been able to reverse my diastolic dysfunction, starting with the help of immunomodulators and cell signaling factors. More recently, he has been using stem cell therapy, and focuses heavily on restoring the "balance" of the gut/human symbiote via diet, dysbiosis, etc to let the body repair itself, which I personally like, because I still believe in the body's inherent ability to restore some equilibrium.

    However, not being "fully" healed yet myself, I have the same questions, particularly concerning the brain. Dr. Lerner's research points toward the cardio-tropic nature of some of the Herpes viruses, but with the XMRV finding, one has to wonder whether they are just opportunists "piling on?" Moreover, I wonder how much of this is about THE virus, even if in a latent state, still coding for proteins and provoking the immune/inflammatory cascade/methylation block/reversed HPA axis and how much of this is about damage ALREADY done. I take anti-virals, but they are from natural sources (artemisins). Hawthorne is very good for the heart by the way, and magnesium can equilibrate an asynchronous heart (I take injections). If you can't get into see Dr. Cheney or can't afford him, you might consider checking out his website first, even if only for a month.

    This is an old link, but a good place to start.
  4. AllWXRider

    AllWXRider New Member

    so if you can erradicate the infection, recovery should begin. When the mitochondria (energy factory) in the cell is damaged, the cell is "totalled"

    I have diastolic depression, my heart muscle is too stiff to relax. This can lead to CHF, sounds bad but it means that the heart fails to keep up.

    Dr. Teitelbaum makes a good point about muscle stiffness, that it takes more energy to relax a muscle than to relax it. He uses an example of a dead body having rigor mortis, we call it a "stiff".

    One product that has had great success with this is Ribose.
    Many companies buy the bioenergy ribose in bulk and repackage it.

    My heart definitely has more endurance with ribose.
    1 scoop (5g) 3X a day until it kicks in, then 2X a day for maintenance.
  5. rausten

    rausten New Member

    Thank you. I am in the process of screening docs for their interest in working with me and the cardiologist, and the acupuncturist, and the massage therapist, and the nutritional issues and so forth. I will check out the website. I have already switched to a gluten-free and dairy-free diet. Since then, I have had virtually no edema. I have been using Ribose for several months and it does make a difference, and have added the recommended nutrients that are supposed to help mito- function. But in the meantime I have caught a three-kleenex-box cold and feel like undead roadkill. I want to walk into the new internist's office armed to the teeth with information. I have managed to come a good way getting to about 60 percent functionality, but with this recent nasty shot across the bow, my bvody is almost back to ground-zero. Thank goodness, my brain didn't go south this time. Had to relearn reading, writing and arithmetic and figure out a new way to become creative. Slog, slog, slog. Again thank you so much for your reply.
  6. ladybugmandy

    ladybugmandy Member

    i am not sure that we can recover completely but hopefully enough so that we can appreciate life once again.

    i was told by a retrovirologist that some damage probably cannot be reversed, such as damage to the lymph nodes (scar tissue, etc), effects of long-term inflammation, etc etc.

    i think he may have said something about bone marrow too....i am not sure.

    i am not too worried about brain damage because the brain seems to be able to create more neuronal connections, especially with the help of supplements such as NADH. i know people who have recovered and say they do not notice much lasting brain damage.

  7. mbofov

    mbofov Active Member

    I was told by my doctor a few years ago that I too had a form of congestive heart failure typically seen with CFS. I was diagnosed from an impedance cardiography test.

    Since that time I've been taking d-ribose, increased magnesium, co-Q10, l-carnitine, B12 (sublingually and by injections I do myself) and hawthorn (along with lots of vitamins and minerals). I don't know if my heart function has increased, have not been retested in about 2 years (actually a little afraid to be retested) I recently switched to a different brand/form of hawthorn called HeartCare by Nature's Way,it's supposed to be about the best form of hawthorn, costs a little more but well worth it. I get most of my supps on-line so they are not too pricey.

    I read that Richvank (promulgator of the methylation protocol) believes that the CFS-related heart problems will be ameliorated to a great extent (maybe entirely, I don't remember) by lifting the methylation block present in many (most?) people with CFS. This block leads to glutathione depletion.

    I've been following his simplified methylation protocol for close to 2-1/2 years. I had quite a rough time with detoxing at first, had to go very slow. And for most of the 2nd year, I wasn't able to follow it because I was sick so much and could not handle detoxing on top of being sick. But I restarted it in earnest about 6 months ago. Since I first began the protocol, my crashes have become noticeably lighter, I don't feel as awful, and I get over them quicker. Also, I tolerate the protocol supplements quite a bit better than initially - I still detox with them, but it's much more tolerable. So I'm hoping this is an indication that I'm nearing the end of detoxing so much. I don't know if I dare to hope that my crashes are nearing an end too. But I have made progress I am sure I would not have made otherwise and so have no regrets doing this.

    So this is another avenue you may want to explore. If Rich is right, then it will help your heart to heal as well.

    Also, I've read there's a link between mercury and mitochondrial malfunction. I can't give you the chemistry, but my hope is that by lifting the methylation cycle block and thereby increasing glutathione production, my detox pathways will start to function how they should, and my body will be able to rid itself of mercury and thereby improve mitochondrial function, and consequently help heal my heart (and the rest of my body). I'm not doing a detox specifically for mercury, but plan to in a few months when I think I'll be a bit stronger.

    Also, I strongly recommend you look into low-dose naltrexone. Several people on this board are taking it. It modulates and boosts the immune system, which I badly need as I'm almost constantly fighting some sort of bug. Also, many people who have been taking ldn find their thyroid function suddenly improving a lot, such that they have to cut back their thyroid meds. It's helped AIDS patients, people with Crohn's and MS and people with FM. I'm going to be starting it in a week or two. Side effects are supposed to be minimal - read about it at - there are also a couple of yahoo groups re ldn, and there are some good threads about at the Phoenix Rising board (and do a search on this baord too)

    One more thing - cayenne is supposed to be very good for the heart. I tried it once but it made me detox (like almost everything else!) - this was a few years ago and I'm hoping that I will be able to tolerate it soon (maybe even now)

    I'm sure you already know this, but for much of this illness we have to educate the docs. They are probably not going to tell you about the methylation protocol or ldn therapy or cayenne. I think the best doctor will be one who admits he knows very little about this illness and is willing to be educated.

    Take care and let us know you how do -

  8. wendysj

    wendysj New Member

    Hi Rausten,

    Thanks for bringing this issue up... I have an extra "click" in my heart. My cardiologists says that it's pretty normal since I have a small chest cavity. They don't think it has anything to do with the CFS.

    You wrote that you don't have any edema anymore now that you're changed your diet... I have swollen hands/feet. Sometimes it's all the up to my thighs and up to my elbows. A vascular surgeon did a high leg ligation on both of my legs because he said my valves leak blood back down into my feet. (It did nothing for the swelling issue.) My Rheumy has diagnosed RA and contributes my hands being swollen to that.

    Is there any chance I have edema because of my heart? Where were you swollen?

    Thanks again,
  9. mbofov

    mbofov Active Member

    My doctor also has me taking a small dose of Carvedilol (generic for Coreg) - 3.125 mg. twice a day -

  10. kat0465

    kat0465 New Member

    is so far out of reach for me im stuck :( although i see a prominent CFS Dr. in Houston, who has helped me, she dosent seem to know what to do about the heart thing.
    I too have miserable heart symptoms, palps, rapidheart beats, skipped beats, chest & back pain.I've got it all.

    about 10 years ago they found a slight thickening of my Mitral valve,but that was about it.
    a few months ago i had a holter,bloodwork,ekg,chest xray done. holter showed a few brady & tachy blips but not too much at all.
    But like you RunningAntelope, i feel the heart thing is getting worse.i see Dr again in feb, and if i am brave enough i will ask for an echo, it's long overdue.
    ok, my question is if you reverse the Methylation block, does that help the heart thing we have going on? low blood volume and all?? it's all so overwhelming, and scary!
  11. mbofov

    mbofov Active Member

    Here are 2 posts from Ricvank, one short and one long. The upshot is he believes that reversing the methylation block can help our heart problems.

    First post from Richvank: (I forgot to get the date)

    As you probably know, Dr. Cheney has been reporting that many of his CFS patients have a type of heart failure called diastolic dysfunction. Heart failure can lead to edema. Dr. Cheney has a different hypothesis from mine concerning what causes the diastolic dysfunction in CFS. In my hypothesis, it is caused by a lowered rate of ATP production in the mitochondria of the heart muscle cells, which in turn is caused by glutathione depletion there, and the subsequent rise in concentration of oxidizing free radicals, which block the Krebs cycle and the respiratory chain. Dr. Cheney hypothesizes that it is caused by a problem in the ability of the cells to handle oxygen, because something is blocking the action of the enzymes needed to control oxidizing free radicals.

    If someone with CFS has edema, I think it would be a good idea to consult with a cardiologist and see if they would run impedance cardiography to determine the cardiac output in the reclining, sitting and standing positions, if possible, and also if they would run an echocardiogram to look for diastolic dysfunction.

    Here's the second post:

    Post from Richvank, 9/22/09 - To AuntTammie re: putting the pieces together
    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,


  12. RunningAntelope

    RunningAntelope New Member

    kat, an echo not done on a highly-sensitive enough machine by a cardiologist not looking for diastolic dysfunction (and most aren't because they aren't used to seeing it) will probably show up as normal, though a cardiac impedance test would be helpful, as well as a test for POTS, if you haven't already done so. Dr. Cheney may be out of reach for you, but, what seemed to help me the most initially as far as the heart were nexavir (a porcine derived immunomodulator formally known as kutapressin), which is a primitive form of a cell-signaling factor, hawthorne (not the berries, but the leaves and the rest of the plant), which is very good for the heart, hydroxy-B12 injections, and magnesium/taurine injections.

    Try to eat a "flawless" diet and drink plenty of water, and if you have low blood pressure (as a result of low cardiac output) as you probably do, you can add salt to the diet or drink coconut water, which is very much like human plasma in its constituency. I still take the reduced form of CoQ10 or you can take idebenone (sp?), but have ditched the other "heart" supplements, most of which show a negative energy flashback on echo, at least in my case.
  13. kat0465

    kat0465 New Member

    thanks so much for all the info,i will be talking to my Dr about Rich Vanks protocol for the methylation cycle block, also about the Kutapressin.
    She has alrady tried to get my atp & Gluthaione level up with shots & sublingual drops.i could not take the shots, my level fluctuate so much i can usually tell when thier really low bythe way i feel.

    i feel like im on a slippery slope with the heart thing, i can fee it getting worse. i know theres got to be somehting more i can do, so thanks again for all the info. It gives me a place to start!

    OOh and Running, does coconnut water do the same thing as coconut oil?? i have been taking a teaspoon of coconut oil aa day for about 2 weeks. i read it has antiviral Properties.
  14. kesser

    kesser New Member


    I would really like to see Dr. Cheney in person. However:
    #1: I really doubt I would be able to afford him any time soon
    #2: currently, there is close to 6 months waiting list.

    Are you aware of any other doctors that are more affordable and/or more accessible, that are closely familiar with Dr. Cheney's diagnostic and therapeutic approach? Is there any way to effectively "educate" my local integrative doctor, who has been taking care of me for number of years? Would it be correct to say, that certain diagnostic tools/techniques are virtually not available and that Dr. Cheney pretty much has a monopoly on supply of cell-signaling factors, thus making his treatment protocol practically out of reach for any doctor outside of his close circle?
    Please, let me know, if there is any way to contact you for possible "back-channeling" of your experiences with Dr. Cheney, that you would kindly agree to share.
    Thank you in advance.