So Discouraged.

Discussion in 'Lyme Disease Archives' started by greatgran, Jan 11, 2011.

  1. greatgran

    greatgran Member

    I thought if I had a definite dx I could deal .. Well not doing so well. Having trouble with meds.
    Not sure of the doctor . Now I am questioning the only two positive bands.. IgG 41 and Igm 23.

    I can not afford or travel to see a LLMD so going to my D.O. . The meds gave me GERD so bad I had to stop. I feel so much better off the antibiotic than on . Then too ,my dose was so small,
    I doubt if a small dose will do any good but can't even tolerate the small does.

    Just venting as I don't know what to do..
    gg
  2. munch1958

    munch1958 Member

    HI Greatgran:

    My long standing GERD went away after taking 10 weeks of Minocin. I was able to get off the purple pill after 12 weeks. I had been "ON" the purple pill for over 15 years too.

    I had doubted my diagnosis initially, but I stuck with it all. 5 years later, I am feeling the best that I've ever felt in my life. I also corrected problems with hypercoagulation caused by the Lyme and other infections and hormone deficiencies. I was grossly deficient in thyroid hormones while taking Armour. I need a lot more T3 rather than T4 (Synthroid). I am also growth hormone deficient and doing shots of HGH under the care of a pediatric endocrinologist.

    If you are doubting your test results please read the following excerpt from Dr Kent Holtorf's old website: (see the revised WB criteria below)

    See the link below for graphics:

    http://www.hormoneandlongevitycenter.com/lymedisease/

    "Diagnosis and Treatment of Lyme Disease
    (A Culmination of the Literature) Kent Holtorf, M.D.
    CHARACTERISTICS of BORRELIA BURGDORFERI
    1. Over 1500 gene sequences
    2. At least 132 functioning genes (in contrast, T. pallidum has 22 functioning genes)
    3. 21 plasmids (three times more than any known bacteria)

    IMMUNE EVASION (‘STEALTH’ PATHOLOGY)
    1. Immune suppression
    2. Phase & antigenic variation
    3. Physical seclusion
    4. Secreted factors

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

    CHRONIC LYME
    1. Disease changes character
    2. Involves immune suppression
    3. Less likely to be sero-positive for Lyme
    4. Development of alternate forms of Borrelia
    5. More likely to be co-infected
    6. Immune suppression and evasion
    7. More difficult to treat
    8. Protective niches

    ALTERNATE MORPHOLOGIC FORMS
    1. Spirochete form has a cell wall
    2. L-form (spiroplast) has no cell wall
    3. Cystic form

    Borrelia burgdorferi develops granules & cysts with environmental stress
    Antimicrobial Agents & Chemotherapy, 1995;39(5):1127-33.

    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    1. Bb demonstrated to invade, inhibit and kill cells of the immune system
    2. The longer the infection is present, the greater the effect
    3. The more spirochetes that are present, the greater the effect

    PROTECTIVE NICHES
    1. Within cells
    2. Within ligaments and tendons
    3. Central nervous system
    4. Eye

    DIAGNOSING LYME
    1. It is a clinical diagnosis supported by appropriate testing (likelihood of a false negative must be understood)
    2. Look for multi-system involvement
    3. 17% recall a bite; 36% recall a rash
    4. 55% with chronic Lyme are sero-negative
    5. PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources
    NATURAL KILLER CELL ACTIVITY AND NUMBER
    1. Low counts seen in active Lyme
    2. Reflects degree of infection
    3. Can be used as a screening test
    4. Can be used to track treatment response
    5. Can predict relapse

    ELISA ANTIBODY TESTING
    1. Over 75% of patients with chronic Lyme are negative by ELISA

    WESTERN BLOT
    1. Reflects antibody response to specific Bb antigens
    2. Different sensitivities and specificities of the bands
    3. Some bands are potentially seen in different bacteria- “nonspecific bands”
    4. Some bands are specific to spirochetes
    5. Some bands are specific to Bb
    6. Specific: 18, 23-25, 28, 31, 34, 37, 39, 58, 83 & 93
    7. Spirochetes in general: 41 (flagellum)
    8. First immune response if present is usually 41 and 23 KD bands
    9. Response to the 31 KD proteins is not usually seen for a year after initial infection


    CDC IGG WB CRITERIA
    1. IGG WB 5 of the 10 bands (18,23,28,30,39,41,45,58,66)
    2. Criteria based on early Lyme
    3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)

    CDC IGM WB CRITERIA
    1. IGM WB 2 of the 3 bands 23, 39, 41
    2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)

    REVISED CRITERIA WITH WB
    1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
    2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
    3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
    4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
    5. If positive for Borrelia on any test, consider testing for neurotoxins
    6. Consider testing for co-infections (discussed below)
    7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)
  3. victoria

    victoria New Member

    When one doesn't have the cash, I know it is just about impossible to get treated. I don't know what to tell you - the politics of this disease make it impossible for the gov't hc programs or pvt insurance to pay for anything that is meaningfully long enough.

    One thing you might look into is the Salt/C protocol for Lyme, it is the cheapest and there are people who say that is the only way they improved even after trying extended abx or herbs. There is a yahoo group for it as well.

    ((hugs))
    Victoria