Reply to Trish on LYME

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Jun 21, 2011.

  1. Manwithfibro

    Manwithfibro New Member

    I received my test results today. I would greatly appreciate any help/comments you have. Thank you in advance!!

    IgG results

    18 kDa -
    22 kDa -
    23-25 kDa -
    28 lDa -
    30 kDa -
    31 kDa IND
    34 kDa -
    39 kDa IND
    41 kDa +
    45 kDa -
    58 kDa ++
    66 kDa -
    73 kDa -
    83-93 kDa -

    IgM results

    18 kDa -
    22 kDa -
    23-25 kDa -
    28 kDa -
    31 kDa IND
    34 kDa IND
    39 kDa -
    41 kDa +
    45 kDa -
    58 kDa -
    66 kda -
    73 kDa -
    83-93 kDa -

    Trish, Found out thru lots of phone calls and lots of bugging people who really know that the 58 band, which I have multiple +'s on as well is very specific to Lyme. It is a Heat Shock Protein that the Lyme bacteria makes to protect itself from fevers/heat. Thus, if you have had
    a fever or got over-heated, this bacteria will make a protein to protect itself from dying and it shows on band 58. It is so convincing that some LLMDs will say Lyme Positive with ONLY that band showing. It is ONLY lyme that can cause that band to be positive despite the controversy of the unknown online. If you are showing strong @ 58, like me, then you have lyme. End of story. Get on antibiotics. Good luck.
  2. Nanie46

    Nanie46 Moderator

    You will see if you compare your results to this info:

    and the western blot info on page 7 of this paper:

    that your results are significant. My LLMD says that an "IND" result is like a light may not be dark, but it's still the same it is significant.

    Bands 31, 34, 39 and 58 are considered Lyme specific and you have all of 41 which should also show but isn't lyme specific.

    Band 31 can cross react with viruses, but with other lyme specific bands showing, it really doesn't matter.

    If you don't have a LLMD, go to's Seeking a Doctor board and let the healing begin!

    Good luck!!
  3. munch1958

    munch1958 Member

    I copied this from creator of FFC's treatment protocol, Dr Kent Holtorf's website. It still amazes me that this info did not trickle down to all the doctors that work in their locations across the country. According to this, my WB results showed that I am positive to LD two different ways yet I got a 2 page letter from them stating that I didn't have Lyme.


    "Diagnosis and Treatment of Lyme Disease
    (A Culmination of the Literature) Kent Holtorf, M.D.
    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)

    1. Immune suppression
    2. Phase & antigenic variation
    3. Physical seclusion
    4. Secreted factors

    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

    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

    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

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

    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

    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

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

    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

    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)

    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)

    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)

    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
    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

    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)
    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

    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

    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

    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

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

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

    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

    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)

    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

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

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

    1. Doxy 200 mg bid
    2. Rifampin 300 mg bid

    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"
  4. TrishinSpokane

    TrishinSpokane New Member

    I have yet to get to see a LLMD for these test results. They all want cash up front, which I can not afford to do and especially in the 400-600.00 range.

    These labs were sent to an Infectious Disease specialist here in Spokane, who sent them back to my PCP with the message I dont have Lyme!! So heart breaking, to be so sick and not have proper medical care!!

    Of the LLMD specialist I could find, were in the greater Seattle area and came with really good recommendations!! Oh knows what is going to happen now.............

    I'll have to continue to be treated or not, for the chronic EBV, CMV, ME/CFIDS and other problems I suffer with!! Thanks again for taking the time to post to my post!!

    [This Message was Edited on 07/20/2011]
  5. Jayhawk29

    Jayhawk29 New Member

    For those that have EBV, Lyme etc. you need to research UBI or UVBI (Ultra-violet Blood Irradition). My daughter was sick for nearly 3 years and after 22 doctors and specialists not being able to diagnose, a chiropractor did a live blood analysis and discovered she had stage 3 adrenal exhaustion. We believe her very high level of EBV caused this. We discovered UBI through a newsletter from Dr. Robert Rowen. After just one treatment, her health improved dramatically. She had her 2nd one a couple of weeks ago and since has not had any more infections, energy and stamina have increased significantly and overall a feeling of well being. People have commented on how much better she looks- face has good color. Amazon has a very good book decribing the UBI process called "Into the Light" by William Campbell Douglass, MD. It also gives countless studies and success stories. This technology was developed prior to WWII and is on a comeback as it does much more than antibiotics and kills hard to kill viruses. Research UBI, UBVI (or sometimes called photoluminescence) for your state and you can locate a doctor to discuss treatment.

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