Dr,Cheney Phase 1,2,3 and Mito fuel ????

Discussion in 'Fibromyalgia Main Forum' started by spacee, Feb 18, 2007.

  1. spacee

    spacee Member

    Dr. Cheney Phases:

    1. Viral Onset (may not have, I didnt)

    2. Brain and Pain May last weeks or decades. Can't think. Pain is worse.

    3. Mitochondria problems but patients tend to do well within their boundaries

    OK, I seemed to have been in phase three. I started Mitochrondia Ignite and coQ10. Was great for a few weeks. Lots of energy. Then back to no energy.

    Then couldn't add 1 and 3 without thinking about it. And couldn't read even easy books. Taking baths cause of extra pain (muscle) and skin is burning worse.

    So, looks like to me I pushed myself from Phase 3 back to Phase 2. Seem to be coming out of it since stopped the Mitochondria Ignite about a week ago.

    Any thoughts? Or perhaps this is FYI.

    Spacee

  2. cherylsue

    cherylsue Member

    You can have overlapping phases at any given time. You just don't get over one phase and then the next in a linear fashion.

    It sounds like you had a bit of a relapse. Don't give up. Go over carefully what you were doing and revise your treatment plan.

    Have you addressed heavy metal toxicity? Are you treating any infections?

    Just some thoughts.

    Good luck,
    CherylSue
  3. spacee

    spacee Member

    Thanks for the good thoughts.

    Yep, I know it was the Mitochocria Ignite that ProHealth had on the back of their catologue as one of their TOP sellers that did it. And it was soooo good for while!

    Well, I will keep it for occasional use but not three times a day, every day.

    On a side topic. I have been trying to figure out why Cheney prescribes Nexvir and Immunovir but doesn't describe himself as a "virus" chaser any more.

    Well, I think Mcondon answered the nexvir question by saying that Cheney thinks it helps the heart in some way.

    And then the Immunovir, Cheney uses to keep the immune system moduated. The fact that it kills viruses is just a bonus. I think, maybe.

    Spacee

  4. cherylsue

    cherylsue Member

    I think what Cheney meant (from the DVD) was that he no longer identifies the particular virus that is making one sick. He said he wants the body to identify the virus and suppress it. The fact that he thinks Nexavir the most potent antiviral around must have some clinical basis. He thinks it is raising intercellular glutathione which kills these viruses whatever they may be. However, he did say Nexavir kills all the herpes family viruses in vitro. In vivo? we can only pray that it does for us.

    Which CFS subset do you fall under? Dr. DeMeirleir has identified 3 subsets. See the article in the ProHealth library. Search under "De Meirleir."

    Hugs,
    CherylSue
  5. LouiseK

    LouiseK New Member

    Sorry you're not doing well. I was just about to start this product. Can you tell me how it helped you and how it hurt you?

    Many thanks.

    By the way the skin burning is miserable, isn't it????
    Ever think of Lyrica for that? I can't say that it works, just that it's possible it works.
  6. LouiseK

    LouiseK New Member

    Sorry you're not doing well. I was just about to start this product. Can you tell me how it helped you and how it hurt you?

    Many thanks.

    By the way the skin burning is miserable, isn't it????
    Ever think of Lyrica for that? I can't say that it works, just that it's possible it works.
  7. Gretchen12

    Gretchen12 New Member

    Where is his article on 3 subsets of CFS? Couldn't find it in ProHealth Library.

    Thanks,

    Gretchen
  8. Gretchen12

    Gretchen12 New Member

    Where is his article on 3 subsets of CFS? Couldn't find it in ProHealth Library.

    Thanks,

    Gretchen
  9. spacee

    spacee Member

    The M. Ignite gave me more energy than I have had in years. I have a twin who is well and I reminded myself of her! LOL. So, I think it has a place in my "plan". But, just for holidays or trips. I think I took it about a month or a little longer.

    The klonopin really helps my skin pain. For which I am very grateful. If I have breakthrough, I can take about .12mg of xanax and it will ease enough. I have always been able to take very small amounts of some meds and do fine.

    I have Dr. Cheney's DVD, in fact I ordered 2!. But I haven't watched it yet with my brain being "down". I am feeling more like I can do it now.

    I have to look up Dr. D. So will post later about that.

    Spacee


    [This Message was Edited on 02/19/2007]
  10. Pianowoman

    Pianowoman New Member

    This is interesting about the Mitochondria Ignite, I've been wondering about trying it. Do you think you overdid things when you had all that extra energy i.e. went outside your energy envelope? I'm trying to think why it would have that effect on you.
    Anyway, I hope you perk up soon.

    Kathy
  11. spacee

    spacee Member

    Well, I certainly did go outside of my energy envelope. I had a great time! My sis was down and a friend from high school came down. But I did take an afternoon nap.

    Then they left and I began to notice that I couldn't read even an easy book. Then not being able to add simple numbers without really concentrating was scary. That is when I stopped the M. Ignite.

    But this is what I don't understand. I thought if we fueled our mitochondria that the expected result was to have improvement. Which I did for about 2 weeks. But to have the mental slow down after sis and friend left and didn't improve with rest BUT got worse. Also, the extra energy was gone too.

    Am I making sense? I guess I am just surprised that the improvement didn't keep on.

    I slept all day off and on and I slept alot over the weekend so I am feeling better. Thanks all.

    Spacee
  12. cherylsue

    cherylsue Member

    Do a search under "De Meirleir." Don't type in anything else. Look at the 8/26/06 article.

    I hope this helps.

    CherylSue
  13. Catseye

    Catseye Member

    Even with the Mitochondria Ignite, you are still missing a crucial mito fuel: ribose. It takes days for the body to make ribose and if your body isn't making it in sufficient quantities, you will run out. I take 1 tsp every morning and afternoon along with the regular mito fuels. I started with just a half tsp in the mornings and it has really worked for me. And are you taking a B vitamin complex? I see the Mito Ignite has pantethine which is the more biologically active form of pantothenic acid (B5), but you also need nadh, which is the coenzyme form of B3. If you think you aren't making nadh from B3 properly, you want to consider supplementing with it, too. I take 5 mg every morning.

    You also need more magnesium than is in the mito ignite. Are you taking something else with magnesium? The coq10 is necessary for the mitochondria, are you using an oil-based gel cap or is it a capsule with powder, probably orange? The oil based form in the gel cap is much more easily absorbed than the other; I was using the other and I didn't get the same results with it. The mito fuels I use everyday have made a phenomenal change in my energy. I haven't crashed since I've been using them. Here's a summary of what I take every day:

    magnesium 600-800 mg (mag glycinate, malate and chelated forms) throughout the day, not all at once

    nadh 5 mg

    ribose 1 tsp (about 5 grams) 2x per day (on empty stomach ONLY, wait 20 minutes to eat or take something else, esp do not take with protein)

    coq10 - 100 mg 3x per day

    acetyl l carnitine 500 mg 3x per day (this is the most easily absorbed form of carnitine)

    All these are available in the immunesupport store. For a more detailed explanation of the mito fuels, here's the article:

    http://www.cfids-cab.org/MESA/DrMyhill-373.pdf

    For reading, I need to take several amino acids 3x per day, then I can read as much as I want. If I don't take them, I can only read a little.

    The amino acids I take are what your brain needs to make neurotransmitters. They are responsible for reading and other bodily functions. The main ones I've found that are for neurotransmitters are:

    TMG - trimethylglycine
    theanine (I've seen this spelled several different ways, including threonine)
    phosphatidyl choline
    phosphatidly serine
    phenylalanine
    5 htp
    tyrosine

    I did a long post about neurotransmitters and what they are responsible for called "neurotransmitter precursors" dated Jan 18. If you're interested in boosting your brainpower, check it out and start researching them.

    These are just amino acids that a normal, healthy person can either get out of their food or their body can make them. Unfortunately, that ain't us. So I take these, along with several other aminos, 3x per day and they replenish my neuros almost as fast as I use them up. As soon as I start to get foggy during the day, I know it's time for my neuro aminos.

    I went through all of Cheney's phases and I've taken or still take almost every supplement he recommends, along with several others. He really knows his stuff. Here's some interesting facts about Cheney:

    "Before specializing in CFIDS, Dr. Cheney served as a Major in the Air Force Medical Corps and was Chief of Medicine at Mt. Home Air Force Base hospital in Idaho for several years before moving on to a private practice in Internal Medicine at Incline Village, Nevada. He was also the Chief of Medicine at the Lakeside Community Hospital in Incline Village, Nevada. In Charlotte, before opening his own CFS clinic, he was the Senior Staff Physician in the Department of Internal Medicine at The Nalle Clinic."

    I'm very grateful for his online protocol. It's certainly alot cheaper than seeing him in person!

    good luck!

    karen
  14. spacee

    spacee Member

    To post all of that for me. I am going to your Jan 18 post to print it out cause I am always "tweaking".

    I am taking pretty close to what you recommend.

    ribose..right. I really LOVE this stuff. helps my heartbeat.
    nadh 15 mg.
    CoQ10 - need to take in a 2nd time
    ALC - need to take it once more
    Slow Mag isn't enough or right kind. I remember sis picking it out for me and we knew it wasn't exactly right but was the best the store had.

    Those at the end I need to get...

    My brain is better. I am reading a book!! But my muscles are weaker. Can tell that at exercise class...bummer.

    Thanks Karen, I am glad they are sold here cause I can print out the label to take to my opthamologist. He is 70 and really into antiaging and alot of the supplements are the same.

    Onward and Upward!!

    Spacee

    Ok, I just looked at your post and think I will just copy your list here!. I do think parts of me are feeling better on these supplements. I have been thinking that for about a week. I take the B's and get the other basics in my eye vitamins.

    Later, I copied your recommendations. I reallly like it that YOU do the research (smile). I like to try different things but I am not good and researching. Dr. Cheney is remarkable. His PhD is in Physics!! That is what he said on the DVD. My brother was a physics major and it was too hard so he dropped it and became a doctor! lol

    Oh yeah, where do YOU get the other stuff. I live in a rural area so about all I have is online.



    [This Message was Edited on 02/22/2007]
    [This Message was Edited on 02/22/2007]
    [This Message was Edited on 02/22/2007]
  15. Mikie

    Mikie Moderator

    The Three Phases of Chronic Fatigue Syndrome: Dr. Paul Cheney's Theory
    ImmuneSupport.com

    10-25-2002

    Advertisement

    By Carol Sieverling
    Carol Sieverling of the CFS & FMS Support Group of Dallas-Fort Worth wrote this article based on transcripts of another member's visit with Dr. Paul Cheney, transcripts of a presentation he gave at a conference in Orlando in October 1999, and the tape of his seminar in Irving, Texas in May 1999.

    CFIDS: The Big Picture

    Paul Cheney, M.D., Ph.D., has treated over 5,000 CFIDS patients in the last 15 years. As many patients were followed over time, Dr. Cheney began to suspect that the illness moved through three distinct phases. One of our members saw Dr. Cheney recently, and he brought up a diagram on his computer and offered a refined version of his theory of the 3 phases of CFIDS.

    The main problem in CFIDS is cellular metabolic dysfunction. The body's cells do not work very well. And every cell is affected. As a result, intracellular acidosis develops - the cells become more acidic inside. This is true of any chronic illness. What is specific to CFIDS are the arrows on the diagram. These are CFIDS-specific mechanisms by which CFIDS disrupts cell function.

    Phase 1: Viral Induced RNase L Activity

    Let's start with Phase I illness. A virus usually triggers CFIDS. (A viral-like onset is reported by 70% of all patients.) The specific virus may not really matter. What matters is that RNase-L activity is initiated as a consequence of the viral assault. All viruses stimulate RNase L, but some more so than others. The mono viruses [herpes viruses such as EBV, CMV, HHV6?] most easily stimulate RNase L.

    However, the trigger may not be a virus. RNase L is a defense against intracellular organisms, and a few unusual bacteria are intracellular. Therefore some bacteria, like mycoplasma and chlamydia pneumoniae, are possible triggers. Any intracellular organism that stimulates RNase L is a possible trigger for CFIDS, which is why the disease can look different among various patients in the beginning.

    What does RNase-L do? It is designed to destroy messenger RNA at the cellular level. The good news is that it hits viral messenger RNA, stopping the virus from reproducing. But it also chews up human messenger RNA, inhibiting every enzyme in the body. Hence, CFIDS patients end up on their back. It is not the virus that makes them sick, so much as it is their body fighting the virus, specifically the RNase L activity.

    Dr. Cheney had suspicions that this illness did change over time, but it was the discovery of a unique lower weight form of RNase L in many CFIDS patients, especially in the first five years of illness, that confirmed his suspicions.

    Research indicated that this aberrant form of RNase L was up to six times more destructive than the typical form. When Dr. Cheney saw these results, (based in part on blood samples from some of his own patients), the hair on the back of his neck stood up. He had always known that CFIDS patients were very sick, but he didn't really understand why. The burning question for him had been "Why are these people so sick?" With the discovery of the low weight RNase L, the question became "How are these people surviving?"

    What is supposed to happen when a healthy person encounters an intracellular organism? The regular form of RNase L inhibits viral replication, the immune system revs up and wipes out the virus, then everything down-regulates, and they recover.

    But unfortunately that is not what happens in CFIDS. In this illness, the RNase L activity shifts to the more destructive lower weight form and does not shut off. It stays activated much longer, resulting in pronounced cellular metabolic dysfunction, which ultimately affects the liver. Liver function declines because the enzymes used by the liver are being creamed by the activity of the aberrant RNase L.

    Phase 2: Xenobiotic Toxicity

    The shift to Phase II occurs when patients become susceptible to toxins, because RNase L degrades enzymes that the liver needs to effectively detoxify the body. The most common source of toxicity is the gut. For some, it might be the gut AND the mouth [root canals and cavitations]. For others, it might the gut AND the mouth AND their environment.

    The real problem is not usually the gut, it is the inability to detoxify the gut. Everyone has a toxic gut, but healthy people have livers that prevent them from getting hurt by that toxicity. Everyone has a toxic mouth - and root canal teeth and cavitations are toxic - but healthy people have defense mechanisms to defend themselves. The environment is toxic, but healthy people have defense mechanisms. What CFIDS patients are losing, courtesy of RNase L, is their detox defense.

    In CFIDS the toxicity that the liver normally gets rid of now comes roaring into the systemic circulation. Then patients shift from Phase I to Phase II. That shift usually sounds like this: "You know, I felt like I had the flu or mono - and then my disease changed. The sore throats went away, the glands got better, the fever came down - but now I'm even sicker. My basic problem now is that I can't think anymore. My fatigue is worse than ever. And I'm beginning to hurt - a lot." Although 10% of patients do not have much pain. Whether patients have pain appears to depend on the type of toxins involved. So, there's some variability in pain. But the loss of brain function and the severity of the fatigue are certainly driven by toxicity. The Toxicity Phase has a different "feel" than the RNase-L Phase.

    Phase I can last weeks or months, or for some people, years. Phase II can last for a decade - or longer. Phase II can be a very long-winded problem, even though during this phase, the RNase-L activity can down-regulate back to normal.

    So the question is, "When the RNase-L down-regulates, why don't patients get better?" The primary reason is that once the toxicity begins, the toxins themselves can then inhibit the very enzymes necessary to detoxify. So it's a self-fulfilling feedback loop. The toxins themselves injure the enzymes needed to get rid of the toxins. So Phase II can go on for a lot longer than Phase I.

    The second reason is the "Staten Island effect". If you dumped garbage from Manhattan on Staten Island for a decade and then stopped, how long would it take to get it clean? Probably a lot longer than a decade. Once you dump toxicity into the body, especially the types of toxins we're talking about, for any length of time, it can take a lot longer to get rid of them than it took to get toxic in the first place.

    Phase 3: Dynamic Hormone Response Deficits Induced By Hypothalamic Injury

    The transition to Phase III happens next - if patients are lucky, and most are. Phase III has a different sound to it. The toxins, in addition to inhibiting cell function, have invaded the central nervous system and injured deep brain structures, especially the hypothalamus, resulting in problems with virtually every hormone in the body. The actual problem is with the loss of "dynamic hormone response". This means that hormones that should rise and fall according to signals or demands from the body do not respond accordingly. The hypothalamus' major function is to control dynamism.

    Injuring the hypothalamus leads to a loss of dynamic response, such that patients can experience great difficulty in handling the normal stresses and strains of life.

    What does Phase III sound like? "Within my boundaries, I don't feel too bad. I'm pretty comfortable. My problem is that every time I try to exceed those boundaries, I crash. I get worse. So I haul back within my boundaries, and I'm now comfortable again." With the loss of dynamic hormone response, patients cannot cross boundaries. Crossing boundaries requires dynamic response capability, and they no longer have it. In addition to the problems with dynamic hormone response, Phase III may also involve damage to the DNA of energy producing mitochondria. The loss of a portion of mitochondria puts an energy ceiling on patients.

    The extent of the boundaries can vary among patients, depending on the amount of injury done during the first two phases. By no means is everyone home-bound or bedridden. And there is hope. Dr. Cheney does not believe the endpoint of Phase III is totally fixed. There is a good deal of plasticity to the central nervous system, and there can be significant resuscitation of brain function, and perhaps even the mitochondria may not be completely lost. It is possible to have elements of all three phases going on at once, but usually there is a dominant phase. But if you look at how people change over time, CFIDS patients are all headed for Phase III - a point in time when they're pretty comfortable within their boundaries.

    Phase 3: DNA Gene Rearrangements

    The Gene Rearrangement is the fourth arrow on the diagram. Patients are actually juggling their genetic code to find help. They're playing a poker game in which they are shuffling their genetic deck to find a hand capable of helping them. The winning hands are duplicated. The losing hands are not. The problem is, patients have a lot more losing hands than winning hands. But they compensate by only propagating the winning hands. Is this genetic shuffling a net problem or a net benefit? It could be either way.

    We hope to do a follow-up article on treatments for each phase. Cheney spoke about them in this recent conversation, but those tapes have not yet been transcribed. According to information I already have, a few drugs and a variety of supplements can minimize suffering and injury during all phases. The "heavy hitter" for Phase I patients who have high levels of the aberrant RNase L is the extremely expensive IV drug Ampligen, which is in phase III FDA trials. It appears to down-regulate the aberrant RNase L, at least in some patients.

    The "heavy hitter" for the detoxification needed in Phase II is the undenatured whey. The whey is also a powerful weapon against intracellular organisms. The treatment Cheney is currently researching for Phase III brain resuscitation is injection of fetal bovine growth factors.

    And there is always the hope and promise that our body's own healing mechanisms will shuffle our genetic code and come up with the winning hand that will significantly increase our functionality, or even restore us to health. Never under estimate the body's own healing mechanisms. Dr. Cheney doesn't.

    The Three Stages: A Personal Journey

    I asked Dr. Cheney about my unusual pattern of three separate onsets of CFS with complete, or nearly complete, recoveries in between each episode. Each onset was worse, hitting harder and faster, with more symptoms. And each episode lasted longer. While each left me bedridden for months, the first episode lasted only 14 months, the second almost four years. The current one began in early 1996 and is still ongoing. I am largely home-bound and confined to lying on the couch many hours a day.

    I asked how the phases applied to my history - could I have cycled through all three phases with each episode? He said yes. It was likely that my RNase L had down-regulated very quickly the first time, doing relatively minor damage and allowing me to make a good recovery. He said it sounded like a slight touch of Phase I, months of Phase II, and very little if any Phase III, since I fully recovered.

    With the second episode we suspect the RNase L down-regulated fairly soon, though not quite as quickly as before, again minimizing the damage and allowing me to make a 95% recovery. The theory is a little of Phase I, mostly Phase II, and a touch of Phase III.

    During the third episode we know the RNase L was upregulated for a longer period, not only by my clinical symptoms, but by the RNase L test results. They showed that some of the destructive lower weight RNase L still remained in 1998, two years after the onset of the third episode. The test is done in Belgium at RED (RNase L Enzyme Deficiency) Laboratory.

    (c) Carol Sieverling. http://www.virtualhometown.com/dfwcfids/.