LYME...

Discussion in 'Fibromyalgia Main Forum' started by monicaz49, Oct 6, 2006.

  1. monicaz49

    monicaz49 New Member

    i just posted an ad on craigslist for a support group for fibro/cfs. and i got a reply back from someone who says they had my exact symptoms for 3 years before he was correctly diagnosed. he said he had LYME. has anyone been tested for this? is is an accurate test and treatable???
    so i went online and here is a page i found on lyme for those of you who havent looked into it.
    Seems Fibro, CFS, Candida and Lyme ALL have the same symptoms!!!! I cant stand this.

    http://www.canlyme.com/patsymptoms.html
  2. jarjar

    jarjar New Member

    Yes this is so true. As I have posted before there is a Dr. in Houston that had fm/cfs and his practice was full of cfs/fm patients. Once he became lyme aware and studied proper testing he found he as well as the vast majority of his patients all had lyme.

    There was a Dr. that use to post on this board often a couple of years ago. I was talking with her the other day and she said she knew if she tested all her fm/cfs patients to an accurate lab they would probably all test positive for lyme.

    She works with an antibiotic protocol for cfs/fm that is also used for lyme so she doesn't have the need to test.

    I as well as many others over on this board over the years was misdiagnosed with cfs/fm only to test positive for lyme. Most have moved on from the board but some do post on the lyme section of this board.

    The most accurate test for lyme is the Igenex western blot. You would want the Igg and Igm test. You can search the web and find their site and order a test kit.

    Best wishes,
    j
  3. monicaz49

    monicaz49 New Member

    thank you. i am gonna let kaiser administer their test to me first....if that is negative i will probably do the test where u recommended since it is the best place to go.
    did you get treated and if so are u better?
  4. hopeful4

    hopeful4 New Member

    Hi,
    Yes, it can really drive one crazy. Many of us on this board were diagnosed with CFIDS and/or FM for years, then found out we had Lyme Disease.

    The symptoms are very overlapping. Lyme is sometimes called "the great imitator" because it can mimic so many other illnesses.

    The diagnosis of Lyme is clinical, the doctor takes into account your history, possible exposure, and symptoms. A lab test can be used to confirm the diagnosis, although a negative lab test does not rule out Lyme.

    Most lab testing is not very reliable with Lyme. The most reliable is considered the Igenex Western Blot. Some people say the Bowen is also good.

    By the way, co-infections must also be tested for, they are very common with Lyme, such things as babesia, bartonela, and ehrlicia (sorry about the spelling).

    CFIDS and FM for many of us, are actually caused by the Lyme Disease. Therefore, treating Lyme is critical. The sooner the better. The longer it stays in our systems, the more damage it can, and does, do.

    I went from doctor to doctor for over 5 years, looking for help with my CFIDS/FM. I finally got an accurate diagnosis of Lyme Disease at on of the Fibromyalgia and Fatigue Centers. In addition, their lab testing disclosed quite a bit of collatoral damage, such as super low hormone levels, low NK (natural killer) cells indicating a compromised immune system, high RNase indicating an ongoing infections, mycoplasma pneumoniae, systemic candida, and echovirus.

    Yes, there is treatment for all of this. Outcomes vary depending on the individual, how long they've had it, what additional health problems exist, how treatment is tolerated, what treatment is used.

    My advice is to read all you can. Online go to lymenet, ilads, and lymeinfo. Take books out of the library. Read Dr. Burrascano's "Diagnostic Hints and Treatment Guidelines for Lyme and Ohter Tick Borne Illnesses" which can be found online.

    Find a lyme literate doctor to get diagnosed. Most doctors just do not know enough about lyme or are very ill-informed.

    I will re-post you some articles to read.

    Lotsa luck, take care,
    Hopeful4
  5. hopeful4

    hopeful4 New Member

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

    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.


  6. hopeful4

    hopeful4 New Member

    I think this is the article you may be referring to. This is from the 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


    Eyes/Vision

    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


    Ears/Hearing

    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

    Diarrhea
    Constipation
    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
  7. hopeful4

    hopeful4 New Member

    Treating Chronic Lyme, Dr. Burrascano

    Dr. Burrascano is considered the foremost doctor in U.S. on Lyme and has been treating Lyme patients for 30 years. He recently announced his retirement from his practice so that he could devote his time to teaching others accurate information about Lyme Disease.

    This is an overview of his Diagnostic Hints and Treatment Guidelines mentioned in a post above.



    TREATING CHRONIC LYME DISEASE

    J. J. Burrascano, MD April 24, 2004
    Board Member of International Lyme and Associated Diseases Society
    East End Medical Associates, P.C.
    East Hampton, New York

    TYPES OF LYME DISEASE
    . Early Lyme Disease ("Stage I")
    - At or before the onset of symptoms
    - Can be cured if treated properly
    . Disseminated Lyme ("Stage II")
    - Multiple major body systems affected
    - More difficult to treat
    . Chronic Lyme Disease ("Stage III")
    - Ill for one or more years
    - Serologic tests less reliable
    - Treatment must be more aggressive and of longer duration

    DEFINITION OF CHRONIC LYME
    . Ill for more than one year, regardless of whether treatment has been given
    . Disease changes character
    . Involves immune suppression
    . Less likely to be sero-positive for Lyme
    . More likely to be co-infected
    . More difficult to treat

    CHRONIC LYME DISEASE
    Why are patients more ill?
    . Higher spirochete Load
    . Development of alternate forms
    . Immune suppression and evasion
    . Protective niches
    . Co-infections

    SPIROCHETE LOAD
    . Low Spirochete Load-
    - Inapparent infection
    . Increased Spirochete Load-
    - Symptoms
    - Seropositive

    ALTERNATE MORPHOLOGIC FORMS
    . Spirochete form- has a cell wall
    - Penicillins, cephalosporins, Primaxin, Vanco
    . L-form (spiroplast)- no cell wall
    - Tetracyclines, Erythromycins
    . Cyst?
    - Flagyl (metronidazole), tinidazole
    - Rifampin


    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    . Bb demonstrated to invade and kill cells of the immune system
    . Bb demonstrated to inhibit those immune cells not killed
    . The longer the infection is present, the greater the effect
    . The more spirochetes that are present, the greater the effect

    PROTECTIVE NICHES
    . Within cells
    . Within ligaments and tendons
    . Central nervous system
    . Eye

    DIAGNOSING LYME
    . Is a clinical diagnosis- look for multisystem involvement
    . 17% recall a bite; 36% recall a rash
    . 55% with chronic Lyme are sero-negative
    . Spinal tap- Only 7% have + CSF antibodies!
    . ELISAs are of little value- do Western Blots
    . PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources

    CD-57 COUNT
    (Natural Killer Cells)
    . Low counts seen in active Lyme
    . Reflects degree of infection
    . Can be a screening test
    . Can be used to track treatment response
    . Can predict relapse
    . Commercially available and covered by insurance!

    WESTERN BLOT IN LYME
    . Reflects antibody response to specific Bb antigens- they are reported as numbers called "bands"
    . Some bands are seen in many different bacteria- "nonspecific bands"
    . Some bands are specific to spirochetes
    . Some bands are specific to Bb
    . Positive blot contains bands specific for
    Lyme
    . Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93
    . Spirochetes in general: 41
    . Nonspecific: All others!
    . The more specific bands that are present, the more sure the diagnosis

    NOW THE BAD NEWS! PITFALLS OF THE WESTERN BLOT
    . Very difficult to produce and interpret a western blot
    . Bands do not easily line up
    . Appearance affected by subtle changes in temperature and chemistry of the test system
    . The specific strain of Bb used to produce the antigens may not match the strain the patient has!

    HOW DO YOU MAKE THE DIAGNOSIS?
    . Lyme is a clinical diagnosis
    . Even the best Lyme tests are only an adjunct
    . Use the ILADS point system

    POINT SYSTEM
    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    POINT SYSTEM DIAGNOSIS
    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below

    LYME DISEASE TREATMENT ESSENTIALS
    . Pharmacology
    . Appropriate route of administration
    . Appropriate duration of therapy
    . Supportive measures
    . Search for co-infections

    LYME DISEASE TREATMENT
    Pharmacology
    . Kinetics of killing B. burgdorferi
    - Pulse therapy; cell wall agents vs. doxycycline
    . Critical to achieve therapeutic drug levels
    . Tissue penetration of the antibiotic
    . Intracellular site of action
    . Alternate forms of B. burgdorferi
    - Cell wall agents vs. other mechanisms
    . Antibiotic combinations

    ROUTE OF ADMINISTRATION
    Repeated Antibiotic Treatment in Chronic
    Lyme Disease (Fallon, JSTBD, 1999)
    . No response to placebo
    . Slight benefit from oral antibiotics
    . Intramuscular benzathine penicillin more effective than oral antibiotics
    . Intravenous therapy most effective

    INDICATIONS FOR INTRAVENOUS THERAPY
    . Abnormal spinal fluid (WBC, Protein)
    . Synovitis with high ESR
    . Illness for more than one year
    . Age over 60
    . Prior use of steroids
    . Failure or intolerance of oral therapy

    ANTIBIOTIC CHOICES:
    Oral antibiotics
    . Amoxicillin + probenecid, Augmentin XR
    . Doxycycline, minocycline and tetracycline
    . Cefuroxime (Ceftin)
    . Clarithromycin (Biaxin)
    . Azithromycin
    . Metronidazole (Flagyl)
    . Rifampin

    INTRAVENOUS THERAPY
    . Ceftriaxone (Rocephin) still used the most
    - Current recommendation: 2 grams twice a day, 4 days in a row each week
    . more effective
    . safer, and better lifestyle
    . can use peripheral IV line
    - May also prescribe Actigall to prevent gallstones (Bb in gallbladder!)

    INTRAVENOUS THERAPY
    Other Options
    . Cefotaxime (Claforan)
    . Doxycycline
    . Azithromycin (Zithromax)
    . Vancomycin
    . Imipenem (Primaxin)

    BICILLIN-LA
    . Injection of long acting penicillin-
    "Benzathine Penicillin"
    . Efficacy is close to that of IV's!
    . 1.2 million U- 3 or 4 doses per week
    . No GI side effects and minimal yeast
    . Excellent foundation for combination Rx
    . Given for 6 to 12 months

    TREATMENT DURATION
    . Early infection
    - Four to six weeks to bracket an entire B.
    burgdorferi generation cycle

    . Late Infection
    - Open ended therapy that must continue until signs of active infection have cleared
    - IV for 3 to 6+ months, then oral or IM maintenance therapy if tolerated and effective
    - May need to continue treatment for months to years

    KEY POINTS- I
    . In chronic Lyme Disease, infection may persist despite prior antibiotic therapy
    . Repeated or prolonged antibiotic therapy may be necessary- follow 4-week cycles
    . Illogical to follow serologies
    . PCR positivity and low CD-57 counts imply persisting, active infection
    . Search for co-infections (clinical diagnosis!)

    KEY POINTS- II
    . Treat co-infections
    . Do not use too low a dose
    . Target all morphologic forms of Borrelia
    . Appropriate route of administration
    . Appropriate duration of therapy
    . Supportive measures

    CO-INFECTIONS IN LYME
    . Nearly universal in chronic Lyme
    . Symptoms more vague, and overlap
    . Diagnostic tests LESS reliable
    . Co-infected patients more ill
    . Co-infected patients more difficult to treat

    CO-INFECTIONS IN LYME
    . Bartonella
    . Babesia
    . Ehrlichia
    . Mycoplasma
    . Viruses
    . ?Others

    CO-INFECTIONS IN LYME WHAT IS THE MOST COMMON TICKBORNE INFECTION IN THE NORTHEAST?

    Bartonella
    . More ticks in NE contain Bartonella than contain Lyme
    . Clinically, seems to be a different species than "cat scratch disease"
    . Gastritis and rashes, CNS, seizures, tender skin nodules and sore soles
    . Tests are insensitive! (serologies and PCR)
    . Levofloxacin (Levaquin) is drug of choiceconsider adding proton pump inhibitor

    PIROPLASMS
    (Babesia species)
    . Many different species found in ticks (13+)
    . Not able to test for all varieties
    . WA-1 more difficult to treat than B. microti
    . Diagnostic tests insensitive
    . Chronic persistent infection documented
    . Infection is immunosuppressive

    Babesia Testing
    . PCR and Serology
    . Fluorescent In-situ Hybridization Assay
    - Fluorescent-linked RNA probe
    - Increases sensitivity 100-fold over conventional Giemsa-stained smears
    . Enhanced smears-
    - Buffy coat
    - Prolonged scanning
    - Digital photography

    BABESIA SMEAR
    Conventional blood
    smear

    Fluorescent In-situ Hybridization
    Assay
    Babesia FISH

    Treating Babesiosis
    . Is a parasite, so is not treated with antibiotics
    . Can be treated while on Lyme medications
    . Clindamycin + quinine rarely used
    . Atovaquone (Mepron) plus azithromycin for 4 to 6 months
    . Malarone
    . Added sulfur
    . Added metronidazole (Flagyl)
    . Artemesia

    Ehrlichia
    . Can cause acute and chronic presentations
    . Acute- sudden high fever, severe headaches, very painful muscles, low WBC counts,
    elevated liver enzymes
    . Chronic- same, but not as severe
    . Test with serology, PCR or smear
    . Treat with doxycycline or rifampin
    40 J. J. Burrascano, MD April 24, 2004

    Mycoplasma
    . "Chronic fatigue" germ
    . Not clear its origin or source
    . More often seen in the immunosuppressed
    . Test with PCR
    . Treat with doxycycline and add fluoroquinolone
    . Erythromycins & rifampin, with added hydroxychloroquine OK but less effective

    Other Co-infections
    . Especially in the immunosuppressed
    . Chlamydiae
    . Viruses
    - HHV-6, CMV, other herpes
    . Yeasts
    . Others

    DANGEROUS MIX!
    . Co-infections missed in Lyme patients
    . Co-infected patients more ill
    . Babesiosis and Ehrlichiosis can be fatal!
    . Lyme treatments do not treat Babesia or Bartonella
    . One reason for "treatment-resistant" Lyme
    . "Silent infections" may be transmitted by transfusions

    ASSOCIATED CONDITIONS
    Neurally Mediated Hypotension
    . Dehydration, autonomic neuropathy, pituitary insufficiency
    . Paradoxical response to adrenaline
    - profound fatigue
    - adrenaline rushes and palpitations
    - unavoidable need to lie down
    . Diagnose with tilt table test performed by a cardiologist, and pituitary function tests

    ASSOCIATED CONDITIONS
    Hormonal Dysfunction
    . Significant disturbance of the hypothalamic-pituitary axis
    . Extremely difficult to diagnose
    . When corrected, are tremendous benefits!
    . A major key to the debility in chronic Lyme

    ASSOCIATED CONDITIONS
    Hormonal Dysfunction
    . Chronic lack of stamina
    . Loss of libido
    . Intolerance of stress including Herxheimers!
    . Unexplained weight gain
    . Hypersensitivity to the environment
    . Persistent encephalopathy despite Lyme treatment

    ASSOCIATED CONDITIONS
    Borrelia Neurotoxin
    . Effects
    - Neurologic dysfunction
    - Cytokine activation
    - Hormone receptor blockade
    . Testing for neurotoxin:
    - Visual contrast sensitivity test
    - Measure cytokine levels
    - Test for insulin resistance
    . Treat with bile acid sequestrants

    ASSOCIATED CONDITIONS
    Cerebral Vasculitis
    . Contributes to encephalopathy
    . Vascular headaches
    . Seen on SPECT brain scans

    SPECT BRAIN SCANS
    . Reflects blood flow and health of the nerve cells
    . Pre and post-Diamox scans
    . Proves the symptoms are real!
    . Useful in differentiating Lyme Disease from a psychogenic illness
    . Can be done serially to reflect clinical changes

    SUPPORTIVE THERAPY
    . NUTRITIONAL SUPPORT
    - Blend of multivitamins, B-complex, CoEnzyme Q-10, and magnesium
    - Essential fatty acids
    - Low glycemic index, high fiber diet
    - Absolutely no alcohol
    . MANAGE YEAST OVERGROWTH
    - Oral hygiene, acidophilus/yogurt
    - Low carbohydrate diet

    METHYLCOBALAMIN
    . Prescription drug derived from vitamin B12
    - Aids in healing the central and peripheral nervous system
    - Documented benefit in strength, energy and cognition
    - Helps restore normal day-night cycle
    - Improves T-cell immune responsiveness
    . Must be injected daily for 3 to 6 months
    . Available only as a "compounded drug"
    . Excellent safety profile

    . ENFORCED REST; NO CAFFEINE
    - Must try to prevent afternoon energy sags
    - Proper sleep is essential
    . REHAB AND EXERCISE PROGRAM
    - Required for a full recovery
    - Intermittent program one to three days per week
    - Toning, stretching, posture, balance
    - Aerobics are not allowed until nearly fully recovered

    ALTERNATIVE THERAPIES
    THREE CATEGORIES:
    . Known to be helpful
    . Possibly helpful
    . No proven benefit

    ALTERNATIVE THERAPIES: KNOWN TO BE HELPFUL
    . Vitamins
    - Multi + Co-Q 10 + B complex + EFAs + Mg
    . Hyperbaric oxygen therapy
    - Monochamber preferred; three 30-day dives, one month apart
    . Eastern medicinals
    . Exercise program

    ALTERNATIVE THERAPIES: POSSIBLY HELPFUL
    . Immune modulation
    - Reishi spore extract, transfer factor
    - IVIG only if deficient
    . Vitamin C
    . Acupuncture

    ALTERNATIVE THERAPIES: NO PROVEN BENEFIT
    . Colloidal silver
    . Heat therapy
    - Sauna, infrared, hot tubs
    . Rife machines


    YOUR DUTY AS A LYME PATIENT
    . Political awareness and activity
    - Join support groups and be pro-active
    - Be willing to participate in events
    - Support the major Lyme organizations- ILADS, LDA, LDF
    . Fundraising!!!
    . Aggressively spread the truth especially to the media
    . Never give up, and never go away until our goals are met!






  8. victoria

    victoria New Member

    there is also a lyme board here, if you click on 'message boards' button up above, you will see where to click, lots of info.

    Another place to get good info is ilads.org

    Hope this helps... my son had all my symptoms of CFIDS but then got a lot of pain... I know he'd have ultimately gotten a dx of FM as all his bloodwork was normal... but because of my response to the Marshall Protocol, and the fact we live in the country, I figured it was lyme. And it was. He was dx'd May 2005, still fighting it.

    It is a tough disease. Just remember that even the CDC says for doctors to treat based on the 'clinical picture' as no blood test is 100% correct one way or the other.

    all the best,
    Victoria

  9. jarjar

    jarjar New Member

    It has been over a year ago since I read the story of the Houston Dr. and it wasn't that important at that time to write down his name. I just thought it was an interesting story and took mental note of it.

    J
  10. mindbender

    mindbender New Member

    I've been tested a few times for it. One was positive the next one negative. I probably have been tested since then and don't even know, because of how many tests I have been through. Now I have more knowledge about it and can request propper testing.

    thanx Dan