who else had this onset? from david bell's book please read

Discussion in 'Fibromyalgia Main Forum' started by quamijay, Jan 21, 2009.

  1. quamijay

    quamijay New Member

    Below is a chapter from Dr. David bell's book. I was wondering if anyone else had this type of onset for their CFS. This chapter describes my onset almost exactly, so looking for people who can relate to it so we can share ideas.

    The November Factor

    If robbery is the taking without permission, CFS
    could be the greatest thief of all. Certainly much has
    been stolen - the energy to go to work, to play with
    your children, the ability to enjoy reading a book,
    the luxury of a refreshing sleep. And, like true, great
    crimes, the victim sometimes does not even realize
    that a robbery has been committed. It is as if the
    thief in a department store steals the surveillance
    camera along with the jewelry. The thief of CFS
    steals not only energy, it may robs the victim of the
    ability to perceive loss. And the mechanism is
    simple: energy is quietly replaced with guilt.
    Because the victim feels guilty about experiencing
    fatigue, the robbery goes unreported. Is it any
    wonder that this is a controversial illness?

    The gift of human nature is the perception of who
    and what we are. We see ourselves either accurately
    or inaccurately dependent upon personality and the
    myriad of factors we call life. We see and feel,
    relating these experiences to our image of who we
    think we are. Because fatigue is something to be
    ashamed of in our society, it may go unreported.
    The thief makes off with the priceless essence of
    our life and replaces it with a plaster statue of guilt.
    CFS becomes a thief of identity as well as activity.
    It is possible to say 'I am an athlete', or 'I am a
    devoted parent'. When CFS has crept out the back
    door with energy and hope in a burlap sack, these
    statements are no longer possible. It makes no
    difference whether they were accurate to start with.
    Even if a fantasy, they were a real fantasy for us.
    With CFS, even fantasies and dreams are stolen. It
    is like the movie The Dark Crystal, where the small
    victims are placed in an evil machine that sucks out
    their 'vital essence'. CFS is the thief of the 'vital

    CFS will do to medicine what quantum mechanics
    has done to physics. The laws, once considered
    inviolable, are turned on their head. Just as we were
    comfortable with the simplistic notions of physics
    before relativity, doctors are comfortable with the
    simple notions of medicine now. It really makes
    little difference that these notions are incorrect,
    except to those who are not helped by modern
    medicine. When CFS becomes accepted and
    understood, the simplistic mechanisms will be
    replaced by theories that are able to explain what is
    now considered subtle. And, of course, with this
    understanding will come effective treatments - not
    just those to improve the symptoms of CFS - but
    those that will revolutionize medicine.
    An example of an illness assumed to be
    straightforward but is, in fact, bewildering, is the
    "flu." A person will say, “I was well until a year ago
    February when I got the flu.” Or “In the months
    before I got sick I kept getting the flu.” Or “My
    immunity must be low because I have had the flu
    three times this winter." And of course, when the
    doctor has no idea of what may be causing your
    symptoms, comes the standard, I think it is the flu."
    The longer I study medicine the less I understand
    about the flu.

    Jason Ewing was in his mid thirties, and apart from
    being a little overweight, appeared like many upand-
    coming executives that trooped into the
    company offices in the morning, brief case
    swinging at his right side. He had a promising
    career until two years ago when he developed a
    typical case of the flu. Actually, like many persons
    with CFS, there was one minor difference. This flu
    had more-than-usual exhaustion associated with it.
    It is a detail frequently overlooked, and it has
    always been difficult to tell whether there really was
    more exhaustion with this first flu or whether now,
    two years later, the fatigue is remembered more

    But at the time Jason took time from work and
    returned, still not feeling well, a week later. He had
    not even bothered to see his doctor during the
    illness because 'it was just the flu.' Two weeks later
    he had crept almost to the point of recovery, and
    paid it little attention. He was at work when the flu
    came back a second time. Jason noted with clarity
    that this second flu episode was identical to the first.
    Not just a similar illness, but the same illness. And
    now we are getting into strange territory.

    If a person gets a cold, we assume runny nose,
    cough, sore throat. But, like ice cream, colds come
    in many varieties - hundreds in fact - and they are
    all slightly different. For example, one cold starts
    off with a scratchy throat, swollen glands, a little
    nausea and intense sneezing which lasts a day. But
    this cold is not the same as that of the neighbor
    down the street, sore throat and headache but no
    sneezing. We can call them both colds, but the
    pattern of symptoms is slightly different, and indeed
    with viral studies we can see that the initiating virus
    is also different.

    But what Jason noticed was that whatever the first
    virus had been, the second one felt exactly the
    same. It would be hard to describe the specific
    combination of twenty symptoms that made up this
    particular "flu". It would be like trying to describe
    an unknown ice cream flavor. In the ice cream store
    drooling Mocha Vanilla from the corner of your
    mouth, you say, “that's it.”
    And it was a second one. It was separate from the
    first because he had recovered, implying that his
    body's immune mechanism had conquered the first
    invader. He had returned to work and nearly
    forgotten about the flu three weeks before. He went
    to the doctor and described the course and
    symptoms, and the exact similarity of the second
    course to the first. His doctor said that he could not
    get the same "flu" twice, and that it must be a
    coincidence that the two were similar. Jason nodded
    agreement; they had just made a pact to accept a
    statement, clothed in the language of science, that
    was obviously wrong.

    There are many viruses that cause the illness we call
    the common cold. In fact the viruses that cause
    colds are of several different groups. Flu viruses are
    a little different, but sometimes it is difficult to say
    by the symptoms if something is a cold or the flu,
    because they overlap so much. In general a cold is
    mild, one or two days of feeling crummy, and the
    flu is a week. The flu can be dangerous to older
    people because they develop secondary infections.
    And there is a vaccine to cover many of the strains
    of flu that appear during a given winter. There is the
    'Warsaw' flu, the 'Beijing' flu, the 'Moscow' flu. It
    always seemed to me as a medical student that the
    different strains of flu were named for communist
    cities as if they were deliberate attempts at biologic

    Each flu strain is distinct. If you had the 'Hong
    Kong' flu once, you would develop antibodies to
    this particular viral strain and recover. Then,
    because of blood cells called memory T-cells, you
    would remember this strain and not get it again,
    except in the rare instance after decades when the
    memory T cells become a little senile. That is why,
    in general, we get chicken pox or measles once in
    childhood and then do not get these illnesses again
    when our children have them.

    It is difficult to measure or determine the specific
    strain of virus during an infection. The government
    will look for new strains in order to include them
    into the flu vaccine, but because they take several
    weeks and are costly they are not routinely done
    during a flu infection. You go to the doctor and he
    or she says you have the flu. Please pay at the front
    desk. As an aside, have you ever noticed that the
    first ten visits for CFS are said to be due to a virus,
    and the next ten are said to be due to depression?
    So therefore it is not likely that Jason had the same
    flu twice in a row. And all of this would not have
    made any difference if everything got better and
    resolved. Jason didn't care much about T-cells and
    strain variation. Unfortunately, as he was recovering
    from this second bout he had a third, again with
    identical symptoms. There was a very particular set
    of discomforts that made up this flu and a particular
    malaise, and it came back full force. He was treated
    with antibiotics - maybe it was a sinus infection,
    and again recovered, only to get it again a fourth

    Over the next six months the process kept repeating
    with one significant trend. The episodes of this "flu"
    began coming closer and closer together and the
    recovery period shortened. Six months after the
    initial episode, they were no longer separate bouts,
    but a constant illness with the symptoms of
    abdominal pain, flu-like aching, sore throat, joint
    pain, headache, blurry vision, trouble concentrating,
    and, of course, exhaustion. Instead of being thirty
    five and playing piggy-back with his children, Jason
    had CFS.

    Jason's onset was not the most common for CFS,
    but then, again, there are many types of onset in this
    illness. Jason's particular onset, however, raises
    several important questions. Is the illness due to a
    flu-like virus? Is CFS due to an unusual virus that
    plays hide and seek for the first six months? Or does
    CFS have nothing to do with a virus at all? Can flulike
    symptoms be due to something other than an
    infection with a tiny microbe?

    The first time this question ever occurred to me was
    while an intern, working thirty-six hour shifts in the
    intensive care nursery. After being up all night and
    struggling to remember where I parked my car, I
    would notice that my lymph gland felt swollen and
    that I was coming down with the "flu." But after a
    coma-like sleep I would be recovered and ready to
    hit the next thirty-six hour shift. Another of life's
    ironies: they have now made it illegal for interns to
    work those hours because they would prescribe the
    wrong medications, put IV fluids in the wrong
    patients, and make other mistakes due to fatigue.
    But when a person is disabled with CFS and is
    constantly in that exhausted state, no one believes
    them, particularly the former interns.

    The most common type of onset in CFS is the flulike
    illness that does not resolve. Yet even in this
    more frequent type, there are parallels with Jason's
    flu. In the acute onset, there is a flu-like event,
    which after five days or so begins to resolve, just as
    one would expect with the flu. But after the initial
    resolution, almost to good health, the symptoms
    come crashing back and do not disappear again.
    This implies that the illness is a little uncertain, it
    wavers a little at the beginning as if trying to make
    up its mind. "Shall I come down on Mrs. Peterson
    or not?" If this is so, it had a really hard time
    deciding about Jason.

    A second unusual detail common to the onset of
    CFS is the severity of the fatigue during the initial
    episode of the apparent flu. Again, difficult to
    differentiate in retrospect, but in the initial illness,
    the fatigue seemed to be more severe than usual.
    When I observed the outbreak in Lyndonville, I felt
    that this was one detail which set this flu apart from
    all the others. In fact I felt that you could even guess
    which people were destined to not get better -
    although I never hinted that at the time. The belief I
    held was that there was a unique infection which
    caused CFS.

    What is it about the flu that causes the symptoms
    that everyone knows only too well? The
    conventional explanation is that with an infection,
    viral or otherwise, chemical mediators designed to
    fight the infection are released into the blood
    stream. And it is the presence of these immune
    substances that actually cause the symptoms. Part of
    the evidence for this is that when these substances
    are infused into healthy people they feel rotten, as if
    they had the flu. They flu virus and many other
    viral, and bacterial agents stimulate the production
    of these normal chemicals which causes the
    symptoms. When the body's immune mechanism
    destroys the infecting virus or bacteria the
    production of these immune mediators shuts down
    with a return to good health.

    With Jason, the onset had begun as a typical viral
    infection followed by repeat episodes or relapses
    until a continuous illness developed. His course of
    CFS was then typical. There were good days and
    bad days, but no days without exhaustion, brain fog,
    and muscle and joint pain. There were the usual
    problems with diagnosis, many specialists
    consulted, tests run. After fifteen months the
    diagnosis of CFS was made.

    The time when the flu-like events coalesced into a
    continuous illness was around March of 1995. By
    summertime the symptoms followed a daily ritual
    that varied little. He would have four or five hours
    of up-and-around activity, headaches every other
    day, and so on. When he had a bad week, his
    activity would drop down to two to three hours a
    day and he would feel more ill. On a good week,
    sometimes coinciding with sunshine and a warm
    breeze off the lake, the activity could go as high as
    six good hours a day. Summer eased on into fall,
    and into November.

    Jason had a severe relapse in November, and felt the
    same as at the onset of his illness. Exactly the same.
    His symptoms worsened to the degree that he was
    confined to bed for two weeks. He saw his
    physician who, predictably enough, said he had a
    virus and to take plenty of fluids and aspirin. On the
    next visit he was given an antibiotic just to be on
    the safe side. The flavor of this virus was the same
    flavor that had started his illness nearly two years

    In this detail, Jason is not unique. CFS is an illness
    of relapses and remissions, and when patients
    describe relapses, they describe very similar events
    to those which occurred in their onset. It is not
    uncommon to hear, "It was like it was beginning all
    over again." It is because of this observation that the
    theory of a persistent infection, one that does not
    resolve, has been a steady thread through the
    tapestry documenting the history of CFS. Viral and
    bacterial candidates come and go, but the proof has
    been hard to come by.

    A second characteristic of Jason's relapse that seems
    typical of CFS was its occurrence in November. In
    our office we call it the November Factor. For some
    reason, people with CFS get sick or sicker in late
    fall, and out telephone rings off the hook. I believe
    there is some connection between the unusual onset
    type and the worsening which occurs in November.
    One possible explanation is that the patient has
    caught another bug. Kids are back in school, a
    perfect breeding ground for bugs of all sizes. They
    bring these bugs home, particularly this year’s
    variety and share them with their parents. The
    relapse is due to a worsening caused by an
    intercurrent infection, probably viral. This
    explanation implies that the relapses, and possibly
    the onset, are random, due to any old virus.
    A second possible explanation is that summer is
    over and winter is setting in. Many persons with
    CFS feel better in the summer, perhaps because
    there is less stress, and more time sitting around on
    the porch in the warm August air. For young
    persons and schoolteachers, summer is a time of
    unsustained activity. That is, instead of eight
    straight hours of work, school or study, it is an hour
    here, a couple of hours there with rest in between.
    Therefore starting back to a day with eight straight
    hours of work or school can precipitate a relapse. In
    this theory, the November factor is the resumption
    of sustained upright activity after a stress-free,
    relaxing summer. This possibility implies that a
    critical amount of sustained activity initiates a
    relapse, a common experience for persons with

    A third possibility has to do with sunlight. Upstate
    New York, next to Lake Ontario, undergoes a
    change in November. The days become short with
    sunset at 4:45 PM by mid December. Worse yet,
    water vapor from the lake creates a perpetual cloud
    bank that drifts over Lyndonville and lingers for the
    next four months. Mid day is gray, bleak and cold,
    and all sensible adults have left for Florida. Perhaps
    the lack of sunlight alters the brain’s melatonin and
    the addition of seasonal affective disorder is the
    November factor. Nearly everyone around here is
    depressed all winter, a fact that the chamber of
    commerce leaves out of the brochures. Our great
    joy in winter is a good nor’easter storm which
    blows the clouds up to Toronto and gives us several
    wonderful days of sunlight in which we can shovel
    snow. My lack of enthusiasm for winter here is
    more than compensated for by the arrival of the
    geese in the spring and the following months of
    cherry and apple blossoms that blanket the county.
    There are other possibilities. With the coming of
    cold and bleak weather in November, people go into
    their homes, shut the windows, add plastic sheeting
    to help insulate the windows and begin breathing
    more carbon monoxide. Carbon monoxide, despite
    being a deadly poison, is very interesting. It can
    cause a flu-like illness and prolonged neurologic
    symptoms very similar to CFS. Oxygen makes
    many persons with CFS feel better, at least
    temporarily. Experiments with hyperbaric chamber
    treatments, where oxygen is pushed into tissues at
    high concentrations, have shown improvement in
    patients with CFS. High altitude sickness also
    shares many of the symptoms of CFS, again due to
    decreased oxygen availability to brain cells. Could
    it be that the flu-like event is not due to an elusive
    virus at all, but instead to decreased oxygen
    availability to the cells?

    Medical science is amazing. The technological
    advances are astounding. We can rescue one pound
    preemie babies and transplant hearts, livers, and
    fingers. We can diagnose retroviruses and have
    made great strides in treating AIDS. Few
    pediatricians can boast of seeing measles epidemics,
    and chicken pox will not be seen by the next
    generation of doctors. But try to explain something
    as simple as the flu.

    Jason did well for the most part. The one time he
    got really sick was when I tried to treat him with
    fludrocortisone. He got the same flavor flu-like
    event initiating the relapse. It was not as severe this
    time, and it was not in November. He has been the
    only person treated with this medication who has
    had a relapse, but it again raises the question of
    whether the flu-like symptoms are due to infection
    or an entirely different mechanism. We stopped the
    medication, left him alone for two weeks and the
    relapse ended, albeit slowly. It has now been almost
    five years since Jason began his journey, and he has
    improved slowly and steadily. He is up to eight
    hours of daily activity, and while the symptoms
    persist, Jason feels grateful that the crushing flu-like
    malaise has passed.
  2. Forebearance

    Forebearance Member

    Wow, poor Jason. His onset was a lot like mine, but not exactly.

    I only had the mysterious virus twice. I got sick once in February, with what seemed like a bad flu. I was tested for mono and for strep throat and both tests came back negative. Then I got well. Then I got sick again in March and never recovered from that second round of illness. After some weeks had passed, I did test positive for mono.

    What it suggests to me is that Jason's immune system was being disabled. Somehow his immune system couldn't manage to fight off the virus that was bugging him.

    And now, after all the stuff I've read, I believe that one major thing that can disable a person's immune system is exposure to some kind of neurotoxin.

    If Jason had a susceptible genotype, and he was exposed to a neurotoxin that he was unable to clear from his body, it would just keep poisoning him until his poor immune system couldn't do its job.

    The most common sources of neurotoxins are Lyme bacteria or toxic mold. So probably either Jason got bitten by a tick and didn't realize it, at some point before this started to happen to him, or else the place where he lived or worked had toxic mold in it.

    It struck me that Dr. Bell talked about patients getting worse in November, because that is exactly when toxic mold flourishes and affects people the most. From October-January, the darkest time of the year, is the mold field day. And more people spend more time indoors during that time of the year.

    People who seem to get gradually better from CFS often have moved or have quit their jobs. Somehow they have gotten away from the place where the toxic mold was. And then as their possessions gradually denature, they gradually get better.

    That happened to me. I did move away from the place where I got CFS (a basement apartment). And I was gradually getting better. UNTIL I got a water leak in the apartment where I was living. And then I started going downhill again.

    For more info on neurotoxins, see www.biotoxin.info

  3. kellygirl

    kellygirl Member

    Back in the '80's there seem to be an epidemic, which I was one of the casualties, among health-care workers. In my job, I didn't know to wear gloves all the time, workplaces use to think we were wasting $$$$ with them. Back then, we didn't wear them all the time for patient care.

    I had the mono, lacked muscle tone, had a neck injury where the pain set in the worst. I was too tired to talk, walking felt like weights attached to my legs. The sore throat was constant back then, now it's an indicator to me when the virus is flaring up.

    Today, I deal with the pain moreso than the fatigue. The fatigue is secondary from dealing with pain. I call the pain Fibromyalgia and when the virus kicks in with the sore throat, I know it's the CFS.

  4. quamijay

    quamijay New Member

    Hey forebearance

    I too had a simliar case. I kept getting the same flu each week for around 6 months, went into remission for about 6 months and now have been constantly sick for the last 10 months.

    What other treatments are you doing apart from mold avoidance? I definately dont have lyme and I've been living in a very clean house for the last 9 years and went into complete remission for a few months so is mold still a possibility?

  5. Forebearance

    Forebearance Member

    Hey quamijay,

    I started by reading "From Fatigued to Fantastic" and tried everything in that book that seemed like it might be appropriate for me. It took me a while to work through all the chapters. So I ended up doing some vitamins, minerals, essential fatty acids, antioxidants, and anti-microbials. After about five years of being sick, my endocrine system started going out and I began taking hormone supplements.

    But back in those days, nobody knew about neurotoxins being related to CFS and FM. It can sound really unlikely, but just the fact that you have CFS makes having either Lyme or mold toxin poisoning really likely. There are some other ways to get neurotoxins, though. There are a few people who eat fish with ciguaterra in it, or swim in lakes or rivers with pfisteria or some other poisonous critter.

    My best suggestion is to read all you can about Lyme, toxic mold, and anything else that seems like it might apply to you. It's unfair because it's like getting a big homework assignment right when you feel terrible.

    Dr. Sara Myhill wrote a good paper about supplements that support the mitochondria, which affect energy production. They help the heart, too.

    Besides the supportive supplements I take, I take some of the simplified methylation supplements, some Virastop and Candidase, some cholestyramine, some melatonin, some soluble fiber.

    What each person needs is pretty individual, because CFS seems to pick on whatever your weak spots are. It takes some experimenting to figure out what helps you.

    If you're just recently sick like you are, it would probably be good to start out with some of the supplements that help just about everybody. Here are some good basic supplements:

    Essential fatty acids (try all the kinds and see which ones agree with you the best)
    Vitamin C
    Or maybe a high quality multivitamin
    Milk thistle for liver support
    Coenzyme Q-10 for supporting the heart and muscles

    Those are just my ideas!