Revised western blot scoring system

Discussion in 'Lyme Disease Archives' started by munch1958, Jul 31, 2007.

  1. munch1958

    munch1958 Member

    So far I've found a few websites mentioning a revised WB scoring system. I'm trying to learn more about this. As a result of these changes more cases of LD are being diagnosed and treated.

    Scotland Lyme article:
    http://jmm.sgmjournals.org/cgi/reprint/54/12/1139.pdf

    If lived in Scotland I'd be considered sero-positive. If Scotland and other European countries like Germany can air the big tick secret why can't the USA? Germany reported 30,000 reported Bb infections in 1992 but the population is only 1/3 of the USA. We've probably got 200,000+ people per year getting Lyme.

    The following excerpt is from Dr Holtorf's website:
    http://www.hormoneandlongevitycenter.com/lymedisease/

    There are some charts and graphs that don't post here. You can view them by going to the website. Dr. Holtorf is the genius behind FFC's protocol.

    According to point number 2 of the revised criteria (below) I am IgM positive. This is what Dr C has been telling me all along. Band 30 according to the FFC has no meaning but Dr C says it's the same as band 31. Lyme experts in also Europe say this is a significant band.

    It was bothering me a little that I didn't have a piece of paper saying "POSITIVE". I really wanted to fling that piece of paper in the doubting Thomas & Thomasettes faces and say I told you something was wrong and it's more serious than some fuzzy syndrome.

    According to this 55% of chronic Lyme patients are seronegative! I know I'm feeling very sick. I know I've got something horribly wrong. I keep going from doctor to doctor looking for answers. It's not me ... the doctors are running the wrong tests.

    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)

    LYME DISEASE TREATMENT

    1. Use an integrative treatment for optimal results. NEED MULT-SYSTEM TREATMENT (See CSF/FM pages).

    2. Treating with just antibiotics has poor likelihood for success with chronic Lyme.
    3. Extended duration often needed for chronic Lyme
    4. Use clinical endpoints
    5. Watch for Herxheimer reactions (may occur in 3-4 week cycles)
    ... A. Directed nutraceutical can be beneficial
    ... B. Immune modulatators
    ... C. Antibiotics
    ... ... 1. Oral
    ... ... 2. Intramuscular
    ... ... 3. Intravenous
    ... ... 4. Often need antibiotic combinations with lysomotropics in addition to integrative approach to address different forms (spirochete, L-form, cystic)
    ... D. Intravenous Antimicrobial IV’s (Viral Plus, etc) or IV Immunoglobulin
    ... E. Adjunctive medications (Lysosomotropics) to increase antibiotic effectiveness

    NUTRACEUTICAL
    1. Samento or improved version Keline
    2. Cumanda improved version Eklipse
    3. Consider combination of Eklipse, artemesinin I and Keline as a basis
    4. Fibrinolytic enzymes and heparin if coagulation defect present (present in approximately 80% of cases)
    5. Give probiotics and natural antifungals when using prolonged antibiotics

    IMMUNMODULATION
    1. Essential to improve immune function
    ... A. Leukostim
    ... B. Proboost
    ... B. Maitaki Mushroom
    ... C. Transfer Factor-Lyme specific
    ... D. Low Dose Naltrexone 3.5 mg qhs
    ... E. Delta-Immune
    F. Neupogen (filgrastim) (Enhanced eradication of Bb demonstrated in mice) 5 mcg/kg SQ

    G. Benicar (Marshal Protocol)

    ORAL ANTIBIOTICS
    1. Tetracyclines-Doxycycline, Minocycline 100 mg II tabs bid or Tetracycline 500 mg II tabs tid-qid
    ... A. Good Tissue penetration
    ... B. Covers Borrelia and Ehrlichia
    ... C. Anti-inflamatory properties
    ... D. Photosensitivity, GI upset frequent

    2. Penicillins such as Augmentin 875 mg PO bid-tid or Amoxicillin 875 II tabs bid-tid
    ... A. Monitor LFT’s with Augmentin
    ... B. Addition of Probenecid 500 mg/qd-tid
    ... C. Cannot exceed 3 tabs Augmentin per day due to clavulanate, thus can give with Amoxicillin

    3. Macrolides such as Zithromax 500-600 mg, Biaxin 1000-2000 mg/day or Ketek 800 mg/day
    ... A. Combination therapy often needed (ie plus cephalosporin or Flagyl or tinidazole)
    ... B. Well tolerated
    ... C. Improved tissue penetration with hydroxycholoroquine or amantadine

    4. Cephlosporins (3rd generation) Omnicef 300 mg one po tid or (2nd generation) Ceftin 500 mg II tabs bid

    5. Flagyl 250-500 qd-tid or tinidizole (better tolerated) 500 mg bid for 2 weeks every 1-3 months
    ... A. Kills spore forms of Borrelia
    ... B. May decrease effect of tetracyclines
    ... C. Antabuse reaction with alcohol
    ... D. Potentially neurotoxic
    ... E. Adults only

    6. Rifampin 300 mg bid

    IM ANTIBIOTICS
    1. Benzathine Pennicillin 1.2-2.4 Million Units 1-2 times per week
    ... A. Excellent foundation for combination treatment
    ... B. No GI Side effects
    ... C. Efficacy may be close to IV

    IV ANTIBIOTICS
    1. Consider if illness for greater than year
    2. Failure or intolerance of oral therapy
    3. Consider starting with IV antibiotics for 1- 3 months (until clearly improved) then oral/IM maintenance
    4. May require extended duration with long term disease and immune supression
    5. Ceftriaxone (Rocephin) most commonly used (dose 2 grams qd 4 x/week)
    ... A. Risk of billiary slugging-use Actigall
    ... B. Monitor LFT’s
    6. Cefotaxime (Claforan)
    ... A. Requires twice daily dosing 2 grams bid. Can give as continuous infusion of up to 8 grams/day
    ... B. Monitor LFT’s
    7. Doxycycline 400 mg qd (slow infusion)
    ... A. Requires central line
    ... B. Do not use in pregnancy or children
    8. Azithromycin 500 mg qd
    ... A. Requires central line
    ... B. Limited experience
    9. Unasyn (ampicillin-sulbactum) 3 grams IV tid
    10. Timentim (4th generation penicillin and clavulanate) 3.1 grams IV q 6 hours
    11. Primaxin 500-1000 mg IV bid-tid

    CO-INFECTIONS IN LYME
    1. Very common and nearly universal in chronic Lyme
    2. Diagnostic tests even less reliable
    3. Co-infected patients more ill
    4. Co-infected patients more difficult to treat

    POSSILBE CO-INFECTIONS
    1. Babesia
    2. Bartonella
    3. Ehrlichia
    4. Mycoplasma
    5. Viruses such as EBV, CMV, HHV6, HHV7
    6. Others

    TESTING
    1. Antibody testing has a high rate of false-negative
    2. Consider treatment if poor response despite negative test results.

    BABESIA
    1. Is a parasite (one study showed 66% of chronic Lyme have Babesia co-infection)
    2. Many different species found in ticks (13+)
    3. Not able to test for all varieties
    4. Diagnostic tests insensitive
    5. Chronic persistent infection documented
    6. Infection is immunosuppressive

    TREATING BABESIOSIS
    1. Can be treated while on Lyme medications
    2. Lariam 250 mg (5 caps loading dose) then 1 po week for 5 weeks with Artemisinin
    2. Atovaquone (Mepron) 750 mg qd-bid plus azithromycin 500-600 mg for 4 to 6 months
    3. Consider Flagyl or tinidiazole
    4. Artemesinin demonstrated to be beneficial (2-3 tabs bid)

    BARTONELLA
    1. More ticks in NE contain Bartonella than contain Lyme
    2. Clinically seems to be a different species than “cat scratch disease”
    3. Gastritis and rashes, CNS, seizures, tender skin nodules and sore soles
    4. Tests are insensitive

    TREATING BARTONELLA
    1. Levaquin 750 mg qd
    2. Cipro 750 bid
    3. Doxy 100 mg II po bid
    4. Zithromax 500-600 mg qd

    EHRLICHIA
    1. Flu-like symptoms of severe headaches, very painful muscles, low WBC counts or elevated liver enzymes
    2. Testing insensitive

    TREATMENT OF EHRLICHIA
    1. Doxy 200 mg bid
    2. Rifampin 300 mg bid

    ADJUNCTIAL MEDICATIONS TO INCREASE ANTIBIOTIC EFFECTIVNESS
    1. (Lysosomotropics) Will increase the effectiveness of antibiotic and improve success
    A. Porbenecid 500 mg qd-tid. Decreases B-lactam excretion and used to achieve higher serum levels.
    1. Will also decrease excretion on NSAIDS, benzodiazepines and other medications
    B. Hydoxychloroquine (200 mg qd-bid)-decreases formation of cystic forms and increases penetration of antibiotics into cysts
    C. Amantadine 100 mg qd-tid. Increases penetration into cells and cysts, immune boosting and is antiviral
    [This Message was Edited on 08/02/2007]
    [This Message was Edited on 08/02/2007]
  2. grace54

    grace54 New Member

    Twin is right don't you listen to your DR-HE-HE:) According to the new lyme tests criteria I am now positive with the western blot Igenix.Hope the US soon adopts the same criteria.Blessings
  3. munch1958

    munch1958 Member

    Why is it that we tolerate things being said by a doctor that we would not tolerate from a plumber? Or any paid employee? Listening to our inner voice and researching are ways to overcome ignorance. Oprah says that's God talking to you. Somedays I think she's right.

    I knew Dr Mustafa was wrong when she said it could not possibly be Lyme. "It's just EBV, candida and food allergies, honey!" I did those treatments in 1981 and know the difference.

    Fibro does not get progressively worse nor does it cause a complete personality change. Brain fog is one thing but not being able to recognize numbers and letters is another matter all together. Not being able to read a book because you can't string a few sentances together without reading them over and over is not due to fibro. I've never heard of "fibro rage" either.

    I also love the way Dr M tried to take credit for getting rid of my asthma by claiming it was cleared up by nebulizer gluatathione. That happened after 12 weeks of Minocin last August. I started nebulizing in October long after the asthma was gone.

    Doctors have enjoyed the "holier" than thou attitude for way too long. I'm tired of them acting like they are Gods among mere mortals. They are supposed to guide us through the valley of disease but navigating the health care system has been one of the most awful experiences in my life.

    Add to this people's attitude about chronic illness. They treat us badly because everybody knows you go to the doctor and get fixed. You can be sick for 2 weeks then you're expected to get better. When you don't it's you not the wrong treatment or a bad diagnosis.

    Most of the time I'd rather be the giant cockroach in Kafka's story "The Metamorphosis" then a Lyme disease patient. Kafka had TB so maybe he felt like a leper when he wrote the story. From the way doctors are reacting when I say I'm being treated for Lyme disease I'm beginning to think of me as a leper or some kind of hypochondriac.
  4. grace54

    grace54 New Member

    I know what you mean about putting DR's on a pedastal.We go in expecting a cure but no DR will tell you that he does not cure you but your body will if allowed to. We have come to believe their magic pen to the script is the answer.

    And then you mention the arrogance of said Dr. I know that also. In a phone consult I said my fibro was better but my degenerative disc disease was still bad and I was told to take the cherry concentrate as if that would take care of it and to take more d-ribose for energy though I have tried all this stuff and I am no better or even worse.But one gets the feeling like they are talking to a wall.

    I believe DR's like anyone will often take the road less traveled, they will stick with what they know as it is easier than learning something new.Many also have a big ego as we have allowed them to think they are gods, most of us will not challenge or question them.

    I have a humble Christian Dr who will admit he doesn't know something or can't help me. He will let his guard down to me but how often does that happen. he feels safe with me because I know and admit I am a difficult patient and won't complain to his superiors that he isn't helping me. I question him and bring in research info and he is flexible enough to try things, come to think of it I have two DR's like this.

    But here I am today similar to you but not nearly as complicated as your health is, wondering what is next with so much money spent and so much effort and failed experiments and not a lot of improvement. I came to the conclusion again that I am alone in this situation for now " as far as DR's go"and I must turn it over and have some faith that I will get the right direction. I am a spiritual person and believe that I can find help if I ask for it. but being a driven type A, I sometimes don't know when to get out of the way.

    In my prayers I find comfort that I will be ok. I drive myself nuts and get discouraged with mankind and it does not help. I figure I do my part and then let go and try to be patient.When all is so complicated that even the best Dr's are scratching their heads I have to know my limitations.

    I am slowly learning there is so little I can control in this life but I can control how I respond to it.I have to accept what is, and not what I want: to have any peace, and that is hard for me as I want it and I want it all and I want it now:)

    I just wanted to share some of my thoughts as we have some big challenges we face each day. I am grateful for this site where people get it as I often feel my own family doean't get it or even care to take the time to research and understand why there are days when I have so little to offer.One does not feel so alone coming here for support. I pray for all of us here that we find a measure of healing and happiness:):)
  5. mollystwin

    mollystwin New Member

    I'm a spiritual person too and don't know how I would be getting through this without it.

    dar