old timer with Fibro, wondering about Lyme??

Discussion in 'Lyme Disease Archives' started by BethM, Jun 10, 2006.

  1. BethM

    BethM New Member

    Where do I start? I had no idea it was so complicated, with the many different types and co-infections and all that.

    I am moving in a week, will be starting with a new doctor who is fibro literate, have no idea if she is Lyme literate. What can I bring to her or say to her, to convince her to either test me or send me to someone who knows what to do?

    My symptoms are so close to the Lyme symptoms. Maybe this is my answer, I don't know. It's scary to think about, but hopeful, too, if there is a real treatment for it.

  2. victoria

    victoria New Member

    You could bring her factual info, based on the numerous studies in journals that show that Lyme is pleomorphic and can even persist after the standard 3-6 weeks of abx after initial infection, plus the info about the other commonly associated coinfections that can also go intracellular. Try ilads.org - it is one of the best sites for info.

    If she is not interested, and/or you don't feel confident about her treatment after reading the info at ilads, you could go to lyme flash net for doctor referrals - you will find out who the best lyme-literate MDS (LLMD) are. Many people do travel cross country and even come from overseas.

    Even tho I live near Atlanta and resources like Emory, I take my son 3 hours away to NC... was told nobody really knew how to treat effectively in Atlanta area or elsewhere in Georgia, and to not waste our time and money. I am so happy that I took that advice!

    all the best,

  3. hopeful4

    hopeful4 New Member

    Hi Beth,
    I know it's a frightening proposition to think about, but there is a lot of good info available, and, if it is lyme, there is treatment, and many, many people regain their lives.

    I'm going to cut and paste you some articles and sources that may help when you talk to your new doc.

    Please keep in mind that lyme disease is a clinical diagnosis. That is why seeing a LLMD is so important. Other docs can easily miss the connection between the symptoms, history and labs. You can find an LLMD at lymenet dot org, click on Flash Discussion, click on Finding a Doctor.

    Labs are notoriously unrealiable. One of the most reliable is the IGENEX Western Blot. You can contact Igenex and their website igenex dot com. They can send you a kit. The blood can be drawn by anywhere.

    Best wishes,
    [This Message was Edited on 06/12/2006]
  4. hopeful4

    hopeful4 New Member

    This is from the Immune Support Library:
    ImmuneSupport.com Treatment & Research Information
    You can reprint it from there.

    Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue

    10-03-2005 By Kent Holtorf, MD

    (Reprinted with author's permission)

    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease.

    The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst.

    Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease.

    Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy.

    A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

    More information about Dr. Kent Holtorf: www.fibroandfatigue.com

    ©2006 Pro Health, Inc. Copyright Policy
    By: http://www.ImmuneSupport.com

  5. hopeful4

    hopeful4 New Member


    A suggestion is to go through the symptom list and check off what applies to you. Share with your doctor.

    Below is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover

  6. hopeful4

    hopeful4 New Member

    This is in a brochure format at ilads dot org. It can be used for doctors other than psychiatrists.

    When Should a Psychiatrist Suspect Lyme Disease?

    In a published study (Hajek et al, Am J Psychiatry 2002;159:297-301), one-third of psychiatric inpatients showed signs of past infection with the Lyme spirochete, Borrelia burgdorferi. The International Lyme and Associated Diseases Society (ILADS) has found that even severe neuropsychiatric behavioral symptoms in this population can often be reversed or ameliorated when antibiotics are used along with the indicated psychiatric treatments.

    Don’t miss this crucial diagnosis.

    Patients with late-stage Lyme disease may present with a variety of neurological and psychiatric problems, ranging from mild to severe. These include:

    • Cognitive losses including:

    o Memory impairment or loss (“brain fog”)
    o Dyslexia and word-finding problems
    o Visual/spatial processing impairment (trouble finding things, getting lost)
    o Slowed processing of information
    • Psychosis
    • Seizures
    • Violent behavior, irritability
    • Rage attacks/impulse dyscontrol
    • Anxiety
    • Depression
    • Panic attacks
    • Rapid mood swings that may mimic bipolarity (mania/depression)
    • Obsessive compulsive disorder (OCD)
    • Sleep Disorders
    • Attention deficit/hyperactivity disorder
    (ADD/ADHD)-like syndrome
    • Autism-like syndrome

    Lyme disease is one of the fastest growing infectious diseases in the nation. The Centers for Disease Control and Prevention (CDC) reported over 23,783 new cases in 2002, and the government agency estimates that the total number may be tenfold higher. The disease is caused by the bite of a deer tick infected with the Borrelia burgdorferi (Bb) spirochete and may be complicated by other parasites or co-infections. It is hard to diagnose because fewer than half of all Lyme patients recall a tick bite or develop the signature erythema migrans (“bullseye”) rash. As a result, many patients go untreated and develop psychiatric and/or neurological symptoms.

    Lyme disease sometimes begins as a flu-like illness accompanied by fever, headache, sore throat and joint pain. After infection, patients may develop cardiac or early neurologic problems including meningitis, encephalitis and cranial neuropathies. Look for eyelid droop, facial weakness, numbness or pain, shoulder droop, sensory distortions or any other focal neurological signs. There may be a history of neck pain and stiffness or muscle twitching.

    Some patients may have arthritic symptoms in single or multiple joints. Most patients mention this to a psychiatrist only if directly asked.

    At any time after a tick bite, patients may also exhibit cognitive symptoms such as memory and concentration impairments and word-finding difficulties, ADD/ADHD-like symptoms, learning disabilities, OCD, crying spells, rages, depression/bipolar disorder, panic/anxiety disorders and psychoses - all may be caused or exacerbated by Lyme disease.

    Disorders of the nervous system have been found in 15 – 40% of late-stage (tertiary) Lyme patients (Caliendo et al, Psychosomatics 1995;36:69-74). When Lyme disease affects the brain, it is often referred to as Lyme neuroborreliosis or Lyme encephalopathy. Usually the patient is totally unaware of its presence.
    Neuroborreliosis can mimic virtually any type of encephalopathy or psychiatric disorder and is often compared to neurosyphilis. Both are caused by spirochetes, are multi-systemic, and can affect a patient neurologically, producing cognitive dysfunction and organic psychiatric illness. Such symptoms may be dormant, only surfacing years later.

    Dr. Brian Fallon, director of the Lyme Disease Research Program at Columbia University and principal investigator of the NIH-funded study of brain imaging and persistent Lyme disease, cites five questions that imply warning signs of possible Lyme encephalopathy:

    • Are there markers of non-psychiatric disease such
    as erythema migrans rash, arthralgias or arthritis,
    myalgias, severe headaches, sound or light sensitivity, paresthesias, diffuse fasciculations,
    cardiac conduction defects, word-finding problems,
    short-term memory loss, tremors, cranial neuro-
    pathies, and/or radicular or shooting pain?

    • Is this psychiatric disorder atypical or unusual? For example, does a panic attack last longer than the expected 1/2 hour? Or is it a first ever panic attack at age 50?

    • Is there poor or paradoxical response or excessive
    side effect sensitivity to medications that are
    expected to be helpful for particular psychiatric

    • Is this new-onset disease without psychological pre-
    cipitants such as new stressors or secondary gain?

    • Is there an absence of a personal history or family
    history of major psychiatric disturbances? Negative answers to these questions do not rule out the presence of Lyme disease. But a “yes” to most of the questions, especially in a patient with an out-of-doors lifestyle or a pet, demands further clinical assessment. Dr. Fallon recommends Western blot serologic studies, lumbar puncture, neuropsychological testing, brain MRI and SPECT (single photon emission computerized tomography) scans.

    For more information, see www.columbia-lyme.org.

    Other helpful tests may include PCR for Borrelia burgdorferi in blood, serum, cerebrospinal fluid (CSF) and urine, and/or Borrelia antigen testing in urine and CSF.
    Because blood tests at the top three general medical laboratories in the nation fail to detect 35% of Lyme antibodies, ILADS recommends use of laboratories that specialize in Lyme and other tick-borne illnesses.

    Contact www.lymediseaseassociation.org for a listing of recommended labs.

    Blood tests should not be used to rule out Lyme disease when there is a strong clinical presentation. Dr. Robert Bransfield, a psychiatrist who specializes in infectious causes of neuropsychiatric illness, has developed a structured clinical interview to assess seronegative patients. See www.mentalhealthandillness.com
  7. minimonkey

    minimonkey New Member

    A good place to start is by seeing a Lyme-literate doctor and having tests run through IgeneX labs in California -- they do very sensitive testing for Lyme as well as for co-infections that you are likely to have been exposed to based on where you live. (They aren't cheap, and you do have to pre-pay, but sometimes insurance will re-imburse you)

    I'm a former fibro-diagnosed person, and Lyme treatment is giving me back my life!

    Remember that testing is only a part of the diagnostic picture -- a lot of folks with Lyme test negative on the antibody tests (like the western blot, and the Elisa) but that doesn't mean anything -- the diagnosis should be made clinically (based on symptoms and history) by an experienced physician. Testing for the co-infections is often even less reliable than Lyme testing, so again, it is important to have a doc who knows what symptoms to look for.

    Good luck -- if it IS Lyme, you have a good chance of improvement with proper treatment. Many people have gone from being completely disabled to being almost or even completely symptom free!