FMS OR LYME DISEASE.?.that is the question. please bump

Discussion in 'Fibromyalgia Main Forum' started by hartogold, Dec 16, 2005.

  1. hartogold

    hartogold New Member

    Hi Friends;
    I was diagnosed with FMS about five years ago, I think just because the doc couldn't figure out why I was in so much pain and having so many chronic and acute health issues...many similar to FMS and Lyme disease.

    A few months ago I thought I might read some info that would update me on Lyme Disease. When I read it, I felt like I had been struck by a bolt of lightening.

    I had a tick in my shoulder in 1987. The bite became inflamed and I had flu-like symptoms. The doctor tested me for Lyme disease within the week. At that time it was a fairly new disease and the tests were only 50% accurate. Also I found out that it takes the body weeks/months to develop the antibodies that are used to detect the disease in blood tests.

    I had many of the symptoms of the disease soon after (including Bells Palsy), and they have worsened over the years. I used to donate blood regularly but all of a sudden my liver panels were irregular (another symptom) and they wouldn't accept my blood anymore. That's been showing up in my blood work for years and no one has ever expressed concern about or researched it further.

    After working all my life, I became permanently disabled in 2002 (at age 49). I was approved for SSDI first try. And I like all you suffer with this invisible torture on a daily basis.

    It never occurred to me to ask to be retested for it almost 20 years later, but I've been so ill and in so much pain for so long I'm looking for answers like we all do when we're desparate.

    I think this theory might hold some water and I'd love to get some opions from my wonderful friends here. Perhaps someone else has had the same experience. Thanks for your help.
    Happy Hollydaze

    [This Message was Edited on 12/17/2005]
  2. hartogold

    hartogold New Member

  3. hartogold

    hartogold New Member

  4. hopeful4

    hopeful4 New Member

    I would say YES, go get another test for Lyme Disease! When you do, ask for the Igenex Western Blot, it is supposed to be the most reliable. I think there is another test, too, but I can't remember the name. Not all tests are created equal.

    Keep in mind that Lyme is a clinical diagnosis, taking into account the lab tests, the symptoms, and the patient history.

    It's very important that you are tested by a doctor who really knows about Lyme, called an LLMD (Lyme Literate Medical Doctor). If you do not have one in your area, there are doctors who are considered "Lyme friendly". Also the Fibromyalgia and Fatigue Centers around the country are doing a good job of diagnosing Lyme.

    Quick story on me: sudden onset CFIDS post-surgery in 2000. Also have FM. No treatment of any real help, only palliative. Just recently I was DX with Lyme at the FFC in Seattle. I was shocked, no history of a bite. Now, hopefully, on the way to treatment, and recovery...a long road ahead, but it is treatable.

    You can get good info at lymenet dot org. Also, I'm going to re-post you some applicable articles from a recent thread here.

    Never give up! Glad you are here asking this question. Best wishes always,
  5. hopeful4

    hopeful4 New Member

    Just wanted to say that lyme disease is a clinical diagnosis. Symptoms can and do overlap. I was previously DX w/CFIDS/FM, and just this year with Lyme. I asked my doctor: "Does that mean I don't have CFIDS/FM?" She said, no, I have them all. Right now we're getting busy with treating the Lyme.

    I copied and pasted this from a previous post by karatelady52. Hope it helps. (I'm going to paste in one on CFIDS to follow.)

    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

    Lists of Symptoms of CFIDS
    From Katrina Berne,Ph.D., Running on Empty, The Complete Guide to CFS (CFIDS), 1995 pp. 57-60.

    The following list of symptoms is grouped into three general categories with approximate percentages of PWCs [person with CFIDS, or CFS] who experience them. These percentages are based upon information reported by Drs. Bell, Cheney, Fudenberg, Goldstein, Jessop, Komaroff, Peterson, and two surveys (Kansas City and Phoenix). Grouping symptoms into categories is done for convenience. It is likely that all symptoms are related to neuroimmune dysfunction.

    General or Physical Symptoms:

    Fatigue, often accompanied by nonrestorative sleep, generally worsened by exertion: 95-100%
    Nausea: 60-90%
    Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90%
    Chronic sore throat: 50-90%
    Fevers/chills/sweats/feeling hot often: 60-95%
    Muscle and/or joint pain, neck pain: 65-95%
    Bladder/prostate problems, frequent urination: 20-95%
    Low blood pressure: 86%
    Recurrent illness and infections: 70-85%
    Malaise: 80%**
    Heat/cold intolerance: 75-80%
    Painful and/or swollen lymph nodes: 50-80%
    Systemic yeast/fungal infections: 30-80%
    Fungal infection of skin and nails: 71%
    Weight gain: 50-70%
    Increased/severe PMS: 70%
    Swelling, fluid retention: 55-70%
    Shortness of breath: 30-70%
    Subnormal body temperature: 65%**
    Severe allergies: 40-60%**
    Sensitivities to medicines, inhalants, odors, and foods: 25-65%
    Difficulty swallowing: 55-60%
    Heart palpitations: 40-60%
    Sinus pain: 56%
    Rash or flushing of face: 35-45%
    Chest pain: 40%
    Hair loss: 20-35%
    Eye pain: 30%**
    Pressure at the base of the skull: 30%
    Weight loss: 20-30%
    Tendency to bruise easily: 25%
    Vomiting: 20%
    Other general symptoms reported: Endometriosis; dryness of mouth, eyes; pressure sensation behind eyes; frequent canker sores; periodontal disease; pain in teeth, loose teeth, and endodontal problems; cough; TMJ syndrome; Mitral valve prolapse; Carpal tunnel syndrome; Serious cardiac rhythm disturbances; Pyriform muscle syndrome, causing sciatica; Impotence; Thyroid inflammation; Hypoglycemia or hypoglycemia- like symptoms; Swelling of nasal passages

    Neurological/Central Nervous System-related Symptoms:

    Confusion; inability to think clearly: 75-100%
    Concentration/attention deficit: 70-100%
    Sleep disorder/disturbance (insomnia, unrestorative sleep, unusual nightmares): 65-100%
    Muscle weakness: 85-95%
    Headache: 75-95% (daily headache: 50%)
    Memory problems (especially short-term memory): 80-90%
    Photosensitivity: 65-90%
    Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90%
    Spaceyness, light-headedness: 75-85%
    Muscle twitching, involuntary movements: 55-80%
    Aphasia and/or dyscalculia: 75-80%
    Alcohol intolerance: 45-75%**
    Seizure-like episodes: 70%** (seizures: 2%)
    Coordination problems/clumsiness: 60%
    Paresthesias (numbness, tingling or other odd sensations in face and/or extremities): 25-60%
    Visual disturbance (scratchiness, blurring of vision, "floaters"): 45-55%
    Episodic hyperventilation: 40-45%
    Fainting or blackouts: 40%
    Strange taste in mouth (bitter, metallic): 25%
    Temporary paralysis after sleeping: 20%
    Earache: 20%
    Other symptoms reported: decreased libido; hallucinations; alteration of taste, smell, hearing; tinnitus

    Emotional/Psychological Symptoms:

    Anxiety: 70-90%
    Mood swings, excessive irritability, overreaction: 70-90%
    Depression: 65-90%
    Personality change: 55-75%
    Panic attacks: 30-40%

    These figures represent a range of percentages of reported symptoms in different studies. Patients do not necessarily experience these symptoms all the time. In most cases only one-third to one-half of those reporting individual symptoms indicated that they experienced the symptom at all times. In my survey of the Phoenix area group, figures were compiled to indicate the average total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms).

    PWCs may experience symptoms other than those listed above. Some of the symptoms reported may have been experienced prior to the onset of CFIDS in a milder or different form. Additionally, other illnesses or conditions may exist simultaneously with CFIDS, complicating the diagnostic problems and often causing lack of clarity as to which symptoms are attributable to which conditions.
  7. hopeful4

    hopeful4 New Member

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue (From the Fibromyalgia and Fatigue Center)

    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.

  8. hartogold

    hartogold New Member

    It took over 12 hours but some wonderful angel (you) finally responded with some great info. Thank you so very much hopefull and I hope you have a good, pain-free day.
  9. hartogold

    hartogold New Member

    Thanks for the article. It's actually the same article that I refer to for information. Nice to know I went to the right site. Keep in touch...I'd love to hear about your progress and treatments.
  10. hartogold

    hartogold New Member

  11. hartogold

    hartogold New Member

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