I'm scared

Discussion in 'Fibromyalgia Main Forum' started by AnnieMay, Jul 27, 2003.

  1. AnnieMay

    AnnieMay New Member

    I was diagnosed with CFIDS last Monday - July 21. Have been doing lots of research on-line, and now believe that this is actually my second episode. The first began 4 years ago, was much milder, and I ultimately recovered about 90-95% of my original vitality, for about 2 years. But now - I can't drive myself anywhere beacuse I'm too weak and fuzzy-headed. I can't walk through the grocery if someone else takes me because I have no stamina. And I'm single, up to my ears in debt because of my late husband, was self-employed and now Unemployed, and I'm crying because I'm so scared! Will I get better this time? If I do, will I keep relapsing, worse each time? How can I make a living - how long will my friends and neighbors put up with running errands for me - how long will my friends be able to put up with my chronic illness - I'm so scared! I always defined myself as strong and independent, and now I'm weak and dependent, and I don't know how to deal with that! And I can't afford a therapist. I feel very alone, and very scared, and very depressed because I'm afraid there's no way out. Have I been given a life sentence? Please write - I need friends who understand!

  2. elaine_p

    elaine_p New Member

    I think some people are like you, and have relapses and remissions. It sounds like you really could benefit from seeing a therapist, just to deal with things. Most places have sliding fees. If you have someone in mind (or a recommendation), give them a call and ask. Otherwise you can always call your city/county services and ask.

    You should apply for Social Security NOW. If you've worked for 5 years (20 quarters, it doesn't have to be 5 straight years, but it does have to be within a specific time-frame) you qualify for SSDI. Otherwise, you would qualify for SSI. To apply, just call Social Security.

    And you can call all your creditors and ask to be put on a payment plan. Or make an appointment at a consumer credit counseling agency. When I saw them, he suggested I get a job, but that's because I forgot to tell him I couldn't (and this was at the end of the appt)! Duh. They might even recommend bankruptcy if needed.

    And cut expenses as much as you can. I'll bump a couple messages for you. One's called "How to live on SSD?" and the other's called "Emergency Services--Where To Go......"
  3. achy

    achy New Member

    It is perfectly natural for you to feel this way. On top of everything else you have going on, now your told you have this "syndrome" and don't understand what is happening to your body. We all have been there.

    If you've recoverd before, you may very well do so again. But if you don't, it is not a death sentence. As (forgot her name) said..your life will head in a different direction, not necessisarly in a bad one either.

    You are NOT weak and dependant. You are sick and need help. If your friends are good ones they will continue to be there for you...if not then they were't true friends to start with.

    Being in debt and unemployed is very scary...been there done that. You don't say what type of business you had but maybe you could find someone else to do the "work" part of it? Is there something you could do part-time? Maybe a roonmate to help cut expenses...just a few ideas.

    All I can suggest, and this is what I did, is to write a list of priorities...what you MUST do to get thru today. And do that. Then, what you need to do tomorrow. One day at a time, trying not to look to far into the futuer, or you become overwhelmed.

    If you need help with bills or food help is out there, but it will take a bit of effort on your part. Call your American Red Cross office and see what assistance they can offer. (I used to work for them, they can help) You can call the local HRS office and see what othere agencies are in your area too. You'll be surprised, trust me.
    Then, call your local arthritis foundation, or hospital and find a support group. They can offer a wealth of information and support.

    But most of all remember you are not alone, you are not the first to go thru this, and not the last. One step, one day at a time.

    I hope this has helped. I'll keep you in my prayers.

    Warm fuzzies
  4. 1by1

    1by1 New Member

    dear friend,
    let me tell you that i understand. i have been suffering from depression, real bad for months now, and it is because of this dd. but this board has some very understanding people and just stick here with us, and you will find comfort and hope. i am new here, but it has sustained me thru some very difficult times. if it weren't for people on this board, i don't know where i would be right now. hang in there. we do understand all you are going thru. love, 1by1
  5. Mikie

    Mikie Moderator

    You are going through what is probably the worst part of having CFIDS. There is anxiety about the future and grieving over what may have been lost to illness.

    I want to welcome you to our board; you have come to the right place. There is a lot of wisdome here and you will be amazed at how fast you can learn about CFIDS and possible treatments.

    If you do not have a good doc knowledgeable in treating CFIDS, try to find one. If you tell people where you live in a separate and ask about docs, someone may know a good doc in your area.

    I have both FMS and CFIDS and of the two, CFIDS is by far the worse. Many of us with CFIDS have chronic stealth infections which hide below the radar of the immune system. It is essential to treat these infections in order to feel better.

    In addition, I think building the immune system back up is essential. I buy the denatured whey sold here for this purpose and I think it is very helpful. Notice that Dr. Cheney thinks that the whey is an excellent detoxifier. Diet is important too. Many of us feel better on a high-protein/low-carb diet without eating processed foods. No sugar and no junk food.

    Coming back from a relapse is a slow process and the sooner you start finding treatments which work for you, the better.

    I am going to cut and past Dr. Paul Cheney's article from our library on the three stages of CFIDS for you. You can go to the library whenever you want to read about CFIDS. Dr. Cheney is one of the most eminent experts on our illness and he has a number of articles in our library. This article is a little more technical than a lot of his articles. You may prefer reading some of them before reading this one.

    Don't give up and try not to stress over the future. Right now, concentrate on resting and learning about CFIDS and getting together a plan for healing. It is possible to get better; I have.

    Love, Mikie
  6. Mikie

    Mikie Moderator

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


    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.


    EZBRUZR New Member

    You are in a Great place in your life !!! I do not like hearing it either,however, it is Very true!Many of us have endured much suffering with no regard to the changes that were occuring in OUR lifestyle. The first thing you MUST do is 1 thought at a time :)! I try grouping my issues in 3's. 1) ME, 2)Them, 3)Insignifificant(reality check ;)].I find I am less overwhelmed,that alone HELPS!:).YOU are the way out! Now you can Take Control and set-up your life to work for you!(your body is working against the plan, as with all of us).It's is OK though .accepting that part allows you to do everything else. Does that make sense,(I am learning too)it is all about lifestyle adjustment . We will all get through it together!.This Is a Wonderful source of logical information ,for an unlogical Syndrome! Peace {{{{{{{{{{{HUGS}}}}}}}}},& Blessings, lisa

    EZBRUZR New Member

    Ann,Hello! Hope things are doing better! :) peace-l