Summary of Cheney visit and his current protocol

Discussion in 'Fibromyalgia Main Forum' started by mcondon, Jan 20, 2007.

  1. mcondon

    mcondon New Member

    I went to see Cheney on Monday (1/15), for an eight hour visit and echocardiogram. I have been seeing Cheney since 2001. He has been very helpful to me and his protocol has allowed me to keep working full-time since I got sick with CFIDS in 1998.

    Basically, Cheney continues to focus on diastolic dysfunction that is universally seen in all of his patients. Briefly, this means that the expansion of the heart to fill with blood is compromised in CFIDS patients. His explanation is that diastole (the expansion of the heart to fill with blood) requires cellular energy and CFIDS patients have low energy at the cellular level.
    (Systole, the contraction of the heart to pump out blood, requires almost no energy.) Therefore, the cardiac issues are a manifestation of a deeper problem at the cellular level. He does not think CFIDS patients are suffering from heart failure. At the same time, he sees diastolic dysfunction as a mediating factor in the illness because reduced cardiac output (or stroke volume) results in reduced blood flow to major organ systems. Without adequate blood flow, these organ systems don't funcion properly.

    He was quite excited about a new trial he just completed. Basically, the trial protocol consisted of cardiac cell signalling factors from adolescent and fetal pigs. He gets this stuff from Atrium Biotech. Roughly seven of his patients improved enormously from this treatment, but five did not. He then found through echocardiograms that patients whose cardiac function responds positively to inhaled oxygen were the ones who improved from the protocol. The patients whose cardiac function worsened from inhaled oxygen were the non-responders in the trial. He had a few theories about the underlying dynamics, but I think he was just throwing out ideas without much hard evidence.

    Unfortunately, my cardiac function worsened on the echocardiagram when I was given inhaled oxygen. Therefore, he did not think the protocol would work for me.

    His protocol for me, therefore, remains unchanged. I will list them in descending order of importance to me. Basically, the first three items listed are "essential" to me. The rest offer more marginal benefits as far as I am concerned:

    1. Daily intramuscular magnesium injections. This is mixed with taurine to dilute the magnesium, which is caustic and can burn. For a few years I did this at night (per Cheney's recommendation) but then decided to try it in the morning before work. This was a magical discovery for me, improving my energy level and cognitive function during the day enormously. The benefits in my case were enormous and worth the pain in my rear-end from giving myself a daily IM shot.

    2. Hydroxycobalamine (B-12) injections daily in AM. In the early years, this was very helpful for cognitive function. Cheney prescribes a high dose (10mg per day), and believes it is both an immunomodulator and a detoxifier. I still do it every day, although it has lessened in importance as my cognitive symptoms have improved.

    3. Klonopin/Doxepin/Neurontin "cocktail" one hour before bed. This is basically used to allow patients to sleep. Klonopin induces sleep, while Doxepin and Neurontin keep you asleep. Cheney believes Klonopin is neuroprotective and that all three medications are important for immune function. Personally, I just think it promotes regular sleep.

    4. Nexavir by injection or transdermal gel. Nexavir is essentially a new version of Kutapressin. He believes Nexavir is more potent than Kutapressin was. I have been using the injection form, although Cheney wants me to switch to the transdermal gel. Not sure why. He believes Nexavir has anti-viral properties and improves cardiac function, as measured on echocardiograms of his patients.

    5. A variety of "neutraceuticals". He advises patients to take an anti-oxidant that contains grape seed extract, turmeric, green tea extract, etc. He also advises patients to take NADH, Folic Acid (preferrably tetrahydrofolate since many patients have a genetic defect that prevents them from metabolozing folic acid), Selenium, Co-Enzyme Q10, and Silymarin. Obviously, he also recommends a multi-vitamin.

    6. Isoprinosine. This is a prescription medication (tablet) that is not available in the US, but has been approved in 50 other countries, including Canada and Europe. He thinks it is an important therapy that acts as an immunomodulator, although I have never noticed a major benefit when I am on it. At the margins, it may reduce the frequency of infections, although that may be a placebo effect in my case.

    I hope this review is helpful. I am grateful to Cheney and wish other doctors were more willing to follow his protocol. It would benefit a lot of CFIDS patients who otherwise cannot afford to see Cheney. But, maybe some of you can convince your own doctors to try one or more items in the protocol.
  2. Slayadragon

    Slayadragon New Member

    Thank you so much for sharing this summary!

    I am going to print out a copy and send it to my doctor in order to help him stay informed.
  3. Pianowoman

    Pianowoman New Member

    Thanks you so much for this very clear and helpful summary of your visit with Dr. Cheney. For me, this is another reason why this board is so valuable. To be able to keep up with the protocols of the Doctors who are most expert at this, is really wonderful

    Thanks again
    Kathy
  4. Chootik

    Chootik New Member

    Very helpfull. I'm sure we can all use his suggestions.
  5. mbofov

    mbofov Active Member

    Thank you for your very good summary of Dr. Cheney's treatment protocol, and your impressions of it. I think it's amazing that you've been able to continue working full-time, so obviously this is helping you quite a bit.

    Do you still get post-exertional malaise (acute exhaustion after exercise or exertion)?

    What CFIDS symptoms do you still have while on this protocol?

    My doctor recently diagnosed me with a form of congestive heart failure after an impedance cardiography test. He's having me do four B-12 shots a week, at 1,000 mcg. each, and is upping it to 5,000 mcg. each shot in a week or two.

    I'm also taking d-ribose, about 1-1/2 to 2 tsp. a day, and 200 mg. CoQ10 a day. I think the B12 and the d-ribose are helping my energy a fair amount, although I got sick for a week and then broke my foot last Tuesday, so it's hard to tell. But I think I do feel better, broken foot, crutches and all, than a few months ago.

    I also take 1600 mg. of magnesium a day orally (with an equal amount of calcium citrate), and NAC and taurine, and 5-htp and melatonin for sleep, and some other things. I've been taking the magnesium for quite awhile, so I know it's not responsible for my increase in energy.

    My doctor is also going to have me start digitoxin (an older form of digitalis) in a few weeks. It's supposed to help the heart with pumping. So that will be interesting.

    Dr. Cheney's take on all of this is interesting. I will run it by my doctor to get his impressions. My doctor is familiar with Dr. Cheney's work.

    I personally think that mercury toxicity (or other heavy metals or toxins) may be underlying everything. It can cause heart damage, and interfere with brain functioning, among other damage. I read an article a few months ago about a researcher I think in Sweden who discovered that high doses of B12 helped with mental functioning, when dysfunction was caused by mercury. So that could explain why the high doses of B12 are necessary.

    I also react quite strongly to chlorella and apple cider vinegar, both of which are detoxifying, which indicates some kind of toxic load in my body. I plan to do a well-thought out mercury detox in a few months when I hope to feel better.

    Also, Rich Carson, founder of this board, and someone else I read about both made dramatic improvements when they did a mercury detox.

    Anyways, thanks again - I really appreciate all your information --

    Mary
  6. Sandyz

    Sandyz New Member

    Thanks for your post. I was wandering what Dr. CHeney was using to treat CFS patients these days. Good luck with your treatment.
  7. Slayadragon

    Slayadragon New Member

    I know it was a while back, but how ill were you when you started seeing Dr. Cheney?

    At what point did you see a major improvement?

    Have you noticed an impression from the Nexavir? It's pretty expensive and my insurance won't pay for it.
  8. ulala

    ulala New Member

    about your visit with Dr. Cheney.

    You mentioned tht he treats patients who did respond well to oxygen with products from Atrium Biotech. I looked and they have several frozen products from $200.00-$300.00 plus. NatCell Cytofactors is one of the products:


    NatCell CytoFactors
    by Atrium Biotechnologies
    24 Vials

    Whole, Frozen, Combination Adrenal, Mesenchyme, and Thymus Glandular With Liquid Cartilage

    Our Price: $202.50
    Retail Price: $298.00
    You Save: $95.50 each, a 32% Savings!
    SKU: NCCF-ams



    NatCell® CytoFactors is a whole, frozen combination glandular extract. It may replenish the pool of stimulating factors in the blood and specific tissues with direct focus on building immunity, creating resistance to cytologic factors, and building raw energy and vitality.* It may support healthy aging.*

    Our Naturopath has used the NatCell® line of glandular extracts countless times with excellent results with many clients suffering from chronic fatigue, frank adrenal exhaustion, other degenerative, stress related conditions, and more.*

    SPECIAL NOTE: All frozen products require a signature upon delivery. Please plan ahead so that someone is available to receive the shipment

    Do you think you can find out what product he uses? They are so expensive, as is everything that helps us, for some reason. The products have to be shipped frozen. Is there anything written about his clinical trial?

    Evidentially others are working on this, I found this on a site for Univ. of South Carolina.

    Barbara Sherry (PI), Associate Professor of Virology, Department of Microbiology, Pathology and Parasitology, College of Veterinary Medicine

    Barbara Sherry’s laboratory focuses on viral myocarditis, an important human disease. They use reovirus-induced murine myocarditis to investigate the cardiac response to direct viral insult, both in vivo and in vitro in primary cardiac myocyte cultures.

    Using a large panel of myocarditic and nonmyocarditic reoviruses, they have identified parameters of infection that are determinants of cardiac tissue damage.

    Approaches include the use of knockout mice (and cardiac cultures derived from these mice), overexpression or inhibition of specific cellular factors, and analyses of viral and cellular RNA synthesis, protein expression, enzyme function, and cytokine secretion.

    Recent results include demonstration that induction of and sensitivity to the antiviral cytokine interferon-( is an important determinant of viral myocarditic potential. Her laboratory is currently focused on viral and cardiac cell factors that mediate the interferon response, and these efforts have recently provided the first identification of a cardiac cell factor involved in viral induction of interferon-(.

    Sherry frequently interacts with Fuller, and each of them have served on most of the other's graduate student committees.

    They (and Lommel; Plant and Plant Pathogen Functional Genomics section) attend the Triangle Virology Association’s monthly seminar and discussion group.

    This group has been meeting monthly for over 10 years, with the location rotating between NC State University, the University of North Carolina-Chapel Hill, Duke University in Durham and Glaxo-Wellcome in Research Triangle Park. Sherry and Fuller share the organizing responsibilities this academic year.



    Thanks again for sharing. You're lucky to be a patient of Dr. Cheney's and we're lucky that you shared this valuable info with us!



    [This Message was Edited on 01/20/2007]
  9. Slayadragon

    Slayadragon New Member

    My CFS doctor really likes the products from Atrium too.

    The one you're describing sounds like what they call AntiAging though. Obviously they were trying for a bigger market when they came up with the name. Do you think that's the same stuff?

    My doctor recommended the AntiAging one (which contains thymus, mesenchyme and adrenal) for occasions on which I'm feeling really run-down and stressed. You're not supposed to take it for long periods of time.

    The company makes a similar product, EnergyFlash, that can be used on a daily basis. It comes in little pellets and does not need to be refrigerated or frozen.

    [This Message was Edited on 01/20/2007]
  10. ulala

    ulala New Member

    one that I'vwe post below. I posted something below the description about mesenchyme. I'm sure it is one of the frozen products. If Cheney did a clincial trial I assume that the product he used is expensive. It says these products are available through healthcare providers. I'm not sure if the patient can order them but I'm sure we will find out!

    What do you think?


    NatCell Mesenchyme Frozen 8 vial


    Price: $328.50

    Shipping Weight: 0.50 pounds
    Manufacturer: BioTherapies/Atrium Bio
    Category: Professional
    Shipping & Handling: US standard S/H is flat rate $5.95, free S/H for order over $250.




    Quantity:

    All frozen CarTcell & NatCell products are shipped FedEx Next Days with Dry Ice Delivery. Bayho adds extra $30 to your order for US customer/patient. International Order adds extra $90 and with Paypal payment only.
    To supplement the system with stimulating factors extracted from mesenchymal tissues

    NatCell® Liquid Molecular Extracts are tissue specific growth and cell signaling factor concentrates.

    Atrium Biotechnologies, in collaboration with its parent company Aeterna Laboratories, has developed a patented biotechnology process to isolate and concentrate molecules in their natural, most beneficial state. This hi-tech process allows for selection of desired molecules according to their size and weight. Once the desired fraction of molecules is concentrated they are bottled under aseptic conditions and flash frozen. Throughout this elaborate manufacturing process, the proteins are never exposed to anything but pure water. No heat or chemicals are involved, the end-product is a 100% natural, concentrated fresh molecular compound of the highest possible bioavailability.

    This patented process can be applied to different natural source materials depending on which tissue specific factors are desired.

    NatCell® products are available as tissue specific extracts or in condition specific mixtures. These highly specialized food supplements are available through health care professionals around the globe.

    NatCell® Mesenchyme provides a high concentration of neurotrophic and other growth factors necessary for normal nervous system function, muscular contractions, nerve impulses and endocrine functions.

    Suggested Use: Oral Use Only
    One bottle per week on empty stomach or as recommended by a physician. Thaw the product immeidately before consumption; hold in the palm of your hand to accelerate the thawing process. To assess maximum potency, keep forzen until use.

    Serving Size: 1 bottle x 7 ml
    Porcine Mesenchyme Aqueous Extract (1:1) 7 ml
    Other Ingredients: None








    by James Wilson, ND PhD DC and Carolyn McLuskie
    Rejuvenate: Make young or as if young again
    (Concise Oxford Dictionary).
    A unique and unusual substance called mesenchyme has arrived on the American market with little notice or fanfare. However, you will be hearing a lot about it in the years to come. Mesenchyme will revolutionize the way we handle health problems because of its astonishing and well-documented ability to repair and rejuvenate damaged cells and tissues.
    Mesenchyme is undifferentiated embryonic connective tissue, the true mother lode of cell growth and cell regeneration. Mesenchymal cells develop during the early embryonic stages of mammalian gestation and are the source material from which most of the mammalian body's organs and tissues are made - everything from bones, muscles, and connective tissue to the central nervous system. What is extraordinary about mesenchyme in that when it is ingested it migrates to the area of greatest injury in the body. Once there, it aligns itself with the damaged cells and/or tissues, becomes identical to them, and then starts replicating.

    Regenerates Damaged Cells
    The result is regeneration or replacement of the damaged cells. The implications for speedy and full recovery from everything from broken bones to herniated discs are enormous. We now have the potential to create healing where there was previously no hope of recovery. Later in this article, you will read how one of the authors restored severely herniated discs that should have required surgical. fusion, as well as greatly accelerated recovery from a ruptured Achilles tendon.
    Interestingly, the mechanism for organ formation from mesenchymal cells is still present in some adult animal species. For example, it is the presence of mesenchymal cells that allows a salamander to regenerate its tail if cut off. In the human adult, the only mechanism where these cells normally function is in the healing of wounds.

    The mesenchyme available on the US market is made from porcine embryonic mesenchymal cells. The cells are harvested from pregnant cattle destined for slaughter and subsequent human consumption. Only healthy fetuses from healthy cattle are used. Because mesenchyme is, by definition, undifferentiated fetal cellular material, it has not yet developed immune markers. It is therefore accepted by the human host without provoking an attack by the immune system and can freely work its magic on any number of physical injuries and traumas.

    Mesenchyme has the ability to migrate to any tissue in need of repair and, once at the site, to take on the characteristics of the healthy cell it associates with. When mesenchyme is next to cartilage, it becomes cartilage and replaces or repairs damaged cartilage. This is true for organ tissues too; for example, when it is next to kidney, mesenchyme becomes kidney. If one has damaged cells from a broken bone, mesenchyme associates itself with the wounded tissue, assumes the specific characteristics of that type of bone, and begins to repair the damaged tissue and create new bone cells. It sounds incredible, but much research has verified this unique action. Thus, mesenchyme has great potential in regenerating diseased or injured tissues of all kinds.

    The use of mesenchyme as a therapeutic substance arises from experiments conducted early in the 20th century by Dr. Alexis Carrel, 1912 Nobel Laureate in Biology, who demonstrated that organic tissues could be regenerated in vitro by the addition of fresh younger cells to the culture medium. In the 1930s, the Swiss endocrinologist Dr. Paul Niehans developed a technique for extracting cells from animals and injecting them into his patients to compensate for their bodies' deficiencies. One of the types of cells he found most beneficial was mesenchyme.

    Mesenchyme, used in conjunction with other whole cells and cellular extracts, was popular in Europe during the1960s and 1970s. Many well-known celebrities and politicians visited reputable clinics and spas, including Dr. Niehans' Clinique La Prairie in Clarens, Switzerland, to receive live cell therapy. Notables such as Charles de Gaulle, Charlie Chaplin, and Sir Winston Churchill were just a few of the wealthy, powerful, and famous figures of the last century who went to these spas for live cell therapy, which included mesenchyme as a basic part of the rejuvenation process.

    What makes mesenchyme so unique, special, and efficient is the fact that it is composed of multipotential cells, also known as mesenchymal stem cells, which have the ability to become almost any kind of tissue or organ. Embryologically, all connective and supportive tissues arise from mesenchymal cells. The versatility of these pleuripotetial cells allows them to form cartilage, bone, muscle, connective tissue, and organ tissue.

    In all mammals mesenchyme eventually differentiates into three embryonic tissues - the endoderm, the mesoderm, and the ectoderm. During embryonic development, these three primitive cell types differentiate into all the body's organs and tissues. The endoderm forms the linings of the digestive and respiratory tracts. The mesoderm develops into muscle, connective tissues, bone, and blood vessels. The ectoderm differentiates into the epidermis and the nervous system. A portion of the mesenchyme remains in the placenta and the yolk sac surrounding the embryo in the fetus. It is this mesenchyme that is carefully separated to become the commercially available product.

    Versatile Differentiation
  11. Slayadragon

    Slayadragon New Member

    The one I have is called ProHealth's Molecular CF, made by Atrium. My doctor says the name has been changed to AntiAging. Probably they have more than one formula.

    The ingredients for this one are:

    Porcine Aqueous Mesenchyme Extract (1:1) 1.75 ml
    Porcine Aqueous Adrenal Extract (1:1) 1.75 ml
    Porcine Aqueous Thymus Extract (1:1) 0.70 ml
    Marine Glyosaminoglycans Aquaeous Extract (1:1) 2.80 ml


    My doctor is very familiar with Dr. Cheney's work, but just recommends the products for overall systems support during stressful situations or when the body is worn down.

    He suggested that I take it while I was herxing heavily on Famvir, for instance.

    I've not taken it on more than an occasional basis. Perhaps I will at some point and see what happens.

    I am almost positive that I did not need a prescription when I ordered this product by mail. (It was quite a while ago.)

    A prescription wouldn't be required by law, since all the ingredients in it are available in other over-the-counter supplements.

    It's conceivable that the company could require a doctor's requisition because it wants to create better relationships with doctors, but I doubt it. The total number of doctors who would recommend such a product is awfully small.

    I'd like to hear more about how Dr. Cheney uses this or other products (whether or not in the Atrium line), of course.
  12. ulala

    ulala New Member

    NatCell Mesenchyme Frozen 8 vial that's sold for $328.00 plus shipping.

    Maybe mcondon can find out.

  13. mcondon

    mcondon New Member

    I will post more information on the board later..not much time right now. But, the stuff Cheney used in his trial was specially made for him by Atrium. I am pretty sure it is not on the market yet. It is a mix of mesenchyme and heart from adolescent pigs. In an earlier trial, Cheney tried the multi-organ cell signalling factors from Atrium (adrenal, mesenchyme, thymus, etc.) and it only worked well for a few patients, and some patients deteriorated on it. So he considers his new trial to be much more successful.
  14. ulala

    ulala New Member

    If you can find out any other info that would be great, or maybe someone who was, or is in the trial would find their way here and post!

    It certainly gives us something to think about.

    Thanks again!
  15. Forebearance

    Forebearance Member

    Thank you for this cool info!

    I am still a bit confused by that article about mesenchyme. How do they get pig cells from cattle? (lol)

    It sounds very promising, though.

    I want to try the Nexavir gel, too, even though I will be paying for it myself.

    Forebearance
    [This Message was Edited on 01/21/2007]
  16. mcondon

    mcondon New Member

    Lisa asked how sick I was when I first saw Cheney and when did I notice major improvement. Basically, I had a viral-like onset in the fall of 1998, with what looked like a severe gastrointestinal flu. Over the next six months, I went from 170 pounds to 120 pounds, was constantly nauseated, had constant sharp pain in my vertebrae in my upper back. Basically, I thought I was dying. Over that time, I had an exhaustive medical work-up because my PCP was fairly concerned by the tremendous weight loss. I am 6 feet tall, so at 120 pounds I was starting to look skeletal.

    The only abnormal finding on all these tests was a low white cell count. At about six months into the illness, I suddenly became incredibly fatigued and developed all kinds of other problems (frequent migraines, mouth sores, sore tonsils, severe brain fog, dizziness, inability to sleep, anxiety attacks, muscle pain, chills, flu-like achiness...basically, the whole gamut of CFIDS symptoms.) The brain fog was probably the most troubling symptom. It is such a difficult symptom to describe, but it just felt like my brain was producing enormous static that prevented any normal thought process from occurring. It was like my brain had become detache from the "self". Anxiety attacks, when they occurred, were also extremely troubling to me. They were fairly regular and made me think about suicide. But the fatigue was also severe. Talking and breathing felt tremendously exhausting. I was barely able to keep working at that time, but my wife had just had a baby, she was not working, and I felt like I couldn't stop working. My parents were also quite unsupportive...my father told me I would be a failure in his eyes if I stopped working, and that had a big effect on me. It kept me working, although I haven't been close to my parents since then.

    In late 2000, I decided that doctors in New York were not helping me and my ability to keep working was very questionable, because all of the symptoms were so severe and my energy level was so low. I had read a lot about Cheney and decided to make an appointment, and was lucky that he was seeing new patients at that time. (I am not sure he is now.) My first appointment with him was quite depressing, because he told me that my bicycle ergometry test put me well below the average for the patients in his practice, most of whom were disabled. He told me that I might get sicker, that I might have to go on disability, and that his office would help me get on SSI. He did say that there was a chance that his protocol would help and lead to some improvement, but he was not optimistic. (Cheney is extremely smart, but his bedside manner is not the best...one on one, he reminds me a little of Dr. Spock on Star Trek.)

    After I went on Cheney's protocol, I noticed improvements over the course of about 4 months. The sleep medications were extremely helpful as was the B-12. Note, energy did not improve all that much, but enough to make continued work seem possible. I also noticed that small doses of Klonopin were also quite helpful in reducing brain fog and largely eliminated the anxiety attacks.

    Since then, improvement has been gradual. I am not cured, though. I still get post-exertional fatigue, but not really malaise. That is, my muscles tend to ache, I feel quite tired, etc., but I don't get the whole host of other symptoms, like chills/achiness/brain fog that were so frequent during the first three or four years of being sick. In the last six years, I have noticed enormous improvement in my cognitive function, although I still suffer from impaired memory. I do not suffer from brain fog anymore. My energy level is still low, but I am able to get through most work days with out any difficulty. (I actually typically work 50 hours or slightly more per week, and use the weekends to recover by getting a lot of extra sleep.) I am lucky that my job is highly sedentary and does not involve any travel.

    In summary, I was quite sick when I went to see Cheney the first time and was holding on by my fingernails to my job. Since then, I have made significant improvement, but am not cured.

    In my original post, I noted the six steps in the Cheney protocol in order of importance to me. I should also note that I have been on a food rotation diet for the last five years or so, and competely avoid gluten. That basically means that I only eat a certain food once every four days. Cheney first recommended this because food allergy tests showed allergies to so many foods, and food allergies can be lessened through a rotation diet. When I first started the rotation, I found it to be quite difficult and daunting. Now, I hardly think twice about it -- it is a part of life and seems to create fewer challenges for my immune system. I highly recommend trying it, and would be happy to give recommendations on this front.

  17. mcondon

    mcondon New Member

    A few of you asked about Nexavir. As I said in my first post, I don't think this has had enormous benefits for me, although Cheney sees it as the second most important part of his protocol. (Magnesium injections are most important in his mind...far better than oral magnesium for reasons still unknown.)

    Basically, Nexavir is quite expensive. A 20ml vial is $150, the minimum dose Cheney recommends is 1ml per day, and it is not covered by most insurance. (Mine does not cover it.) At 1ml per day, it runs about $225 per month. Cheney actually recommends patients up the dose to 3ml per day on "bad days", although I have seldom done this because of the expense.

    I will say that Cheney thinks that Nexavir is a fast-acting agent. In other words, a patient does not need to try it for 3-6 months before seeing improvement. Improvement, if it does happen, should be fairly apparent after a few weeks. That means a short trial period of maybe one month might be the best approach to try if you are on a limited budget. If it doesn't make a difference, forget about it. If it helps, maybe try to cut back on something else.

    My guess is that Nexavir is probably more helpful for people in the first phase of the illness, where immune-related symptoms (chills, flu-like achiness) are predominant. If you don't have those symptoms, Nexavir may not make that great a difference in quality of life. (That's just my guess...not necessarily Cheney's view.)
  18. ulala

    ulala New Member

    she said that the cardiac cell signalling factors were from adolescent and fetal pigs. He gets this stuff from Atrium Biotech.

    The article that I posted is confusing because it says that the cells come from porcine, which is pig, but then talks about cattle. I'm not sure what is the actual fact.

    I also only eat small amounts of chicken and fish. I'd like to know what form these cells come in and how they get them. If I had to eat pork to get better I would.

    Hopefully some others with more knowledge will post.

    I completely understand your concerns and feel the same way but I need to know the facts first.

    Best wishes!
    [This Message was Edited on 01/21/2007]
  19. cherylsue

    cherylsue Member

    Thank you for some very informative information of Dr. Cheney's protocol and Nexavir.

    I have remitting/relapsing CFS. Relapses usually last a year with relatively good health in between. Presently, I'm 6 months into a relapse and have lots of fatigue. I'm on temporary disability.

    I am thinking of asking my doctor for a trial of Nexavir transdermal gel although my insurance does not pay for it. I still get some malaise periodically, but not as bad as the first 6 months.

    You said it did not help you with the fatigue part. You feel the magnesium and B12 helped you the most? Did you have any side effects from Nexavir? More fatigue, Herxing???

    I am looking for help with the fatigue.

    Thanks for your input.

    CherylSue
  20. Slayadragon

    Slayadragon New Member

    Do you know if people herx on Nexavir?

    My doctor suggested adding it to the antiviral that I'm taking.

    I'm herxing so strongly at the moment with just the AV that I don't want to take on anything that would make it worse.

    Thanks for all the information you've given us so far. It's been really terrific!