Other diseases that look like Lyme or 'CFS' but aren't

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Aug 21, 2008.

  1. mezombie

    mezombie Member

    Alternative diagnoses list for Lyme disease:

    For a diagnosis of Lyme disease, the following list of conditions have been mentioned in sources as possible alternative diagnoses to consider during the diagnostic process for Lyme disease:

    Ehrlichiosis - may be similar to early Lyme disease.
    Multiple sclerosis
    Chronic fatigue syndrome
    Epstein Barr virus
    Juvenile rheumatoid arthritis
    Systemic lupus erythematosus
    Reaction to arthropod bite
    Erythema multiforme
    Granuloma annulare
    Rocky mountain spotted fever
    Gonococcal arthritis (type of Infectious arthritis)
    Rheumatic fever
    Still's disease
    Viral meningitis
    Bell's palsy

    The other diseases for which Lyme disease is listed as a possible alternative diagnosis in their lists include:

    Acute rheumatic fever
    Chronic Fatigue Syndrome
    Infectious arthritis
    Juvenile Rheumatoid Arthritis
    Mosquito-borne diseases
    Multiple Sclerosis
    Rheumatoid arthritis

    Cluster of diseases with difficult diagnosis issues:

    There is a well-known list of medical conditions that are all somewhat difficult to diagnose, and all can present in a variety of different severities. Diseases in this group include multiple sclerosis, lupus, Lyme disease, fibromyalgia, thyroid disorders (hypothyroidism or hyperthyroidism), chronic fatigue syndrome, diabetes - all of these can have vague symptoms in their early presentations. Also, depression can have some symptoms similar to these conditions, and also the reverse, that many of these conditions can mimic depression and be misdiagnosed as depression.

    Adapted from WrongDiagnosis.com

    I would also add non-tick borne infectious diseases, such as malaria, toxoplasmosis, EBV, HHV-6, heart infections, and even cancer.

    I am not posting this to start an argument. I just think it's important for everyone to consider all the possibilities.

    This is especially important for anyone who is getting a Lyme diagnosis based on symptoms alone.

    [This Message was Edited on 08/21/2008]
  2. Slayadragon

    Slayadragon New Member

    Toxic mold exposure isn't on this list.

    Probably whoever compiled the list doesn't think it's a disease.

    Or that it's even an extremely severe problem.

    It is though.
  3. mezombie

    mezombie Member

    What a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which may be due to a missed major disease. i.e. the patient has:

    a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular disease, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric disease. (Hyde 2006, [Online])

    Some of the illnesses commonly misdiagnosed as ‘CFS’ include:

    Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Ross river virus, Q fever, flu, measles, chickenpox, herpes and many other infections)
    Athlete over-training syndrome
    Multiple chemical sensitivity syndrome (MCSS)
    Multiple sclerosis
    Thyroid illness
    Adrenal insufficiency
    Localised and Metastatic malignancies
    Brain tumours, including astrocytomas, gliomas
    Transverse Myelitis
    Myopathic illnesses including:
    Myasthenia gravis
    Mitochondrial myopathies
    Post-infectious polymyositis
    Vitamin B12 deficiency disorders:
    Pernicious anaemia
    Intentional dietary deprivation
    Intestinal disease associated with or independent of M.E.
    Rheumatoid illness or lupus (SLE)
    Renal or liver disease
    Infectious illnesses including:
    Lyme disease (Borrelia burgdorferi)
    Various psychiatric and social psychiatric states including:
    Anxiety neurosis
    Uncomplicated endogenous or reactive depression
    Clinical depression
    Psychopathic personality disorder
    Post-traumatic stress disorder (PTSD)
    Schizophrenia and other psychiatric disease (Ramsay 1986, [Online]) (Ramsay 1988) (Hyde 1992, p 22) (Dowsett n.d.a. [Online]) (Hooper et al. 2001, [Online]) (Hyde 2003, [Online]) (Hyde 2006, [Online])

    This is of course not a comprehensive list. M.E. expert Dr Elizabeth Dowsett explains that, ‘There are actually 30 well documented causes of ‘chronic fatigue.’’ (n.d.a. [Online]) It should also be remembered that although none of the CFS definitions define M.E., the majority of those with M.E. will be given a CFS diagnosis by default (due to the ignorance surrounding M.E., and the confusion with ‘CFS’). Therefore the possibility that a patient misdiagnosed with CFS has authentic Myalgic Encephalomyelitis should also be investigated, along with these myriad other possibilities.

    [Adapted from ahummingbirdsguide.com]
  4. cfsgeorge

    cfsgeorge New Member

    Thank you for the list. It would take forever to research this and compile it yourself. Now, what doctor or treatment facility can i goto to rule this list in or out?
  5. Spinetti

    Spinetti New Member

    Dr. Byron Hyde in his Nightingale Definition of Myalgic Encephalomyelitis
    (M. E.) gives reasons for this common misdiagnosis:

    The Psychiatric Label:

    Unfortunately many physicians and some senior
    persons in governments, including Great Britain,
    Norway and to a lesser degree the USA and Canada
    treat CFS as a psychiatric illness. This view has been
    arrived at by some physicians’ interpretations
    of the CFS definitions from the Center of Disease
    Control (CDC). Indeed, despite clear signals in the
    1994 CDC definition that CFS is not a psychiatric
    disease (Fukuda, K.), each of the CDC definitions
    and their addenda referring to CFS remain open to
    interpretation as a psychiatric rather than a physical
    illness. This is not a view to which I subscribe. It is
    the CFS definitions themselves that give rise to this
    inaccuracy. Consider the following:

    a) What other physical disease definitions
    essentially state that if you discover the patient
    has any physical injury or disease, then the
    patient does not have the illness CFS? In other
    words if you have CFS then it does not result in
    or cause any major illness. What else could CFS
    then be but any number of various psychiatric,
    social, hysterical or mendacious phenomena?

    b) The various CDC administrations dealing
    with the subject have clearly stated that CFS is
    physical, not a psychiatric disease. However, is
    there any other definition of any physical
    disease that is not provable by scientific and
    clinical tests? Only psychiatric diseases are not
    clearly verifiable by physical and technological

    c) What other physical disease definition requires
    a 6-month waiting period before the illness can
    be diagnosed? Any physician knows that to
    treat a disease adequately you have to be able to
    define the disease at its onset and treat it
    immediately in order to prevent chronic
    complications from arising. To my knowledge,
    in the entire history of medicine, there are
    simply no other disease definitions that have
    ever been assembled with a structure similar to
    the CFS definitions.

    d) If you are still not convinced, check the Internet
    for the definition of: DSMIII Somatization
    Disorder. (DSM) You will find that there is
    little substantial difference to distinguish the
    DSMIII definition from the 1988 and 1994
    CDC definitions of CFS. It is difficult to believe
    that the CDC medical bureaucracy is not aware
    of this similarity. It is thus understandable why
    the insurance industry, as well as some
    psychiatrists and physicians, have simply
    concluded that CFS, if it exists, is a
    somatization disorder.
  6. cfsgeorge

    cfsgeorge New Member

    There are 2 major defining symptoms in CFS that differentiate itself from other chronic illnesses with chronic fatigue as a symptom. What other chronic illness have both the fatigue symptoms of Post Exertional Malaise(PEM) and Unrefreshing sleep in CFS?

    An example of PEM is walking for 20minutes today and then "crashing" the next morning unable to get out of bed for many days afterwards. PEM is the worsening of physical and mental exhaustion felt 24 hours after some minimal physical activity that can last for days or weeks.

    Unrefreshing sleep in CFS is the feeling of "getting run over by a truck" when you wake up from your sleep. Unrefreshing does not do justice in describing the horrible exhaustion, brainfog, and nausea i feel when i wake up in the mornings. I feel worse after waking up from 10 hours of sleep that last for many hours afterwards then anytime in the day.
  7. Spinetti

    Spinetti New Member

    The CDC's focus on fatigue was misguided from the get-go. Fatigue is such a common symptom for so many illnesses that it's next to useless for making a differential diagnosis.

    And in terms of public appreciation for the seriousness of the disease, the name "chronic fatigue syndrome" was a disaster.

    Best wishes,

  8. mezombie

    mezombie Member

    Spinetti, thanks for adding your thoughts here :)

    CFSGeorge, you may very well have ME/CFS.

    You asked how one would go about finding a doctor who would rule out other diagnoses that could account for your symptoms.

    Generally, a good internist should be able to do this. Standard lab tests, if abnormal, would show the need for further testing and perhaps consultation with specialists.

    The International Association of Chronic Fatigue Syndrome/Myalgic Encephalopathy (IACFS/ME) has a helpful guide for physicians on its website:


    If you have trouble with the link, go to iacfsme.org, click on "Educational Services" at the top of the page, and you should be able to find it.

    This section also has some good information about finding a decent doctor once you have a diagnosis.

    I would caution you *not* to mention CFS when you get yourself checked out. As Spinetti wrote, that may get you classified as a "psych" case. Even if it doesn't, the doctor may not bother checking for other causes.

    The reason I keep stressing that there are other causes is because there are some easily treatable and sometimes even curable diseases that mimic CFS. Hypothyroidism comes to mind as an example.

    Also, if you do end up with a diagnosis of CFS, keep in mind that just about every doctor who takes this illness seriously and treats it has some very firm convictions about it. It's like choosing a philosopher! I found connecting with local support groups extremely helpful when it came time for me to decide on what treatment approach I wanted to follow.

    I'm sure I've forgotten something (my brain is really on the fritz today!), but I hope this might get you started in the right direction.

    Good luck!
  9. kjfms

    kjfms Member

    Thank you for starting this thread -- I find it very interesting.

    Karen :)
  10. cfsgeorge

    cfsgeorge New Member

    spinetti, i agree there is no respect for the name Chronic fatigue syndrome. The uninformed public or doctor just thinks you're a bit tired and need some rest or a vacation. It's a total headache trying to explain this disabling illness to others. It should be renamed Chronic Exhaustion ImmunoDysfunction Disease. The other more appropriate name Myalgic Encephalopathy to describe CFS worldwide is a bit off to describe my CFS. Myalgic means "pain" just like in fibroMYALGIA. I have pure CFS with disabling exhaustion 24/7, PEM, insomnia, unrefreshing sleep, brain "fog", nausea/sickness, +12more symptoms, but NO PAIN of any kind, no muscle pain, no joint pain, no headache, no sorethroat, and no fever. Of the 8 major symptoms that define CFS according to the CDC, i barely make the minimum 4/8 because i experience no pains. So what is the best name of this disease for me?

    mezombie, i totally agree we need to rule out everything that looks like CFS. There is no cure and no universally accepted effective treatment for CFS. Other chronic illnesses even life threatening ones are very treatable or even curable. With CFS, it's untreatable and incurable with what medicine has to offer today. The most similar illness to my type of CFS is severe hypothyroidism. Being a doctor myself, i ordered up multiple blood tests for even the rarest forms of hypothyroidism and everything is normal. Now i realize that hypothyroidism is just one possible symptom of CFS. In CFS, other primary chronic diseases are merely just a bunch of symptoms in CFS due to the immune dysfunction. Trying to treat CFS w/o a root cause is like trying to treat AIDS w/o knowing or targeting the HIV.
  11. mezombie

    mezombie Member

    At one point, patients referred to this as Chronic Fatigue Immune Dysfunction Syndrome, or CFIDS. It makes a heck of a lot more sense, doesn't it?

    (Before I forget, hypoparathyroidism is another possible diagnosis that would fit in with 'CFS' symptoms.)

    It's hard to tell whether our immune systems are reacting to a viral, bacterial, fungal, or other infection, or whether we were hit by a virus or other pathogen that is no longer in our body (or no longer detectable) that has left a damaged immune system in its wake.

    I'm not a doctor, but after 18 years of debilitating illness, treatment by some well-known CFIDS pioneers, and contact with others who came down with this who also are or were severelly ill, I have learned a few things.

    The most important is that supporting the immune system nutritionally can help it get to the point where it can fight off whatever infection is going on by itself. The sooner this is done, the better your prognosis.

    A healthy diet is a given. Rich Carson, the founder of this site, got a huge boost out of juicing fresh veggies. Massive amounts of Vitamin C (ideally in IV pushes) as well as Myers' Cocktail have helped many support their immune systems and put a number of people I know on the path to recovery.

    There are many sources on this site as well as the internet that can help you consider some options. One is Dr. Teitelbaum's site, www.endfatigue.com, which has an online questionnaire and a list of helpful supplements based on your answers. You don't have to buy his brand; you can always look at the ingredients and buy them elsewehere. (I don't like his marketing, but he does have many of the basics down, and the FFCs base their treatment on his approach).

    There are a number of helpful tests that you can order yourself. If you click on "treatment" in the left hand margin of the www.ahummingbirdsguide.com website and scroll down to the diet section, you'll come across some useful links.

    Another helpful testing site that comes to mind is Dr. Myhill's. You can find it through a Google search.

    There are tests for candida, celiac, and other diseases that can account for all or may 'CFS' symptoms. You should be able to find information on these diagnosis via the search function at the top left of this page (below the purple tabs).

    I hope some of this information is helpful.

    [This Message was Edited on 09/10/2008]
  12. bunnyfluff

    bunnyfluff Member

    I had terrible problems with PEM and unrefreshed sleep for years until I started treating Lyme, which was found to be one of my major underlying/undiagnosed issues.

    I do not have that problem any more!

    It took me years to be able to get up the courage to even try to go out walking or riding my bike again~ the horrific pain and problems I had aquired previously made me so scared!

    My feeling is that there are so many people that are given a quick Dx of FMS/CFS, and NONE of the other possibilities are explored! You have to be your own advocate.

  13. Spinetti

    Spinetti New Member

    The 2003 Canadian Consensus Case Definition of ME/CFS addresses this issue.

    Although the document lists pain as a major feature for diagnosis (along with fatigue, post-exertional malaise, and sleep dysfunction), it has a footnote which says:

    "There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset."

    The document also lists a number of disease conditions which could explain symptoms and are essential to exclude, and would be tragic to miss, including Lyme disease.

    Unfortunately, mold toxicity is not discussed.

    The Canadian Case Definition with diagnostic and treatment protocols can be found on the National ME/FM Action Network web site.

    Sadly, the Canadian Consensus guidelines have not yet been officially adopted in the US. However, any good doctor in the US who treats ME/CFS should be familiar with them.
  14. tansy

    tansy New Member


    To: United States Department of Health and Human Services, National Institutes
    of Health, and Centers for Disease Control

    We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an
    internationally recognized neurological disease, be also formally recognized as
    a distinct clinical entity in the United States by the National Institutes of
    Health and the Centers for Disease Control. It is time to make the case
    definition/diagnostic criteria explicit in the name.

    Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly
    defined, misunderstood, controversial syndrome which remains underfunded and
    underresearched. The name Chronic Fatigue Syndrome itself has trivialized the
    illness and further subjected these patients to incredulity and ridicule. The
    CFS rubric has not only neglected and failed to help those with ME, it has
    harmed them. ME patients will not improve with cognitive behavioral therapy
    (CBT) or graded exercise (in fact, exercise will make them worse) - yet these
    are considered treatments for CFS. Simply "renaming" CFS will not solve this

    ME should not be considered a subset of CFS, for the hallmarks of ME will not be
    present in the population of CFS patients once the Ramsay criteria are
    established in the US. Patients with Myalgic Encephalomyelitis under the CFS
    criteria must wait for six (6) months before acquiring a diagnosis, a critical
    period in which possible recovery is diminished by lack of proper treatment. The
    ME definition does not require a six month wait.

    We, the undersigned, are "tired of being sick, not sick of being tired."


    AND DEBILITATING DISEASE Petition to United States Department of Health and
    Human Services, National Institutes of Health, and Centers for Disease Control was created by RESCIND, Inc., and National CFIDS Foundation, Inc. And written by
    Tom Hennessy & Jill McLaughlin

    This petition is hosted at http://www.PetitionOnline.com/MEitis/petition.html

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