Discussion in 'Fibromyalgia Main Forum' started by street129, Feb 13, 2010.

  1. street129

    street129 New Member

    HI, everyone, i now frequent the lyme board, i got a copy today, of my lyme report that was done late december. the dr.and i will be going over the result when he gets back from his vacation..

    on the lyme board they say if you have an IND on your report its more leaning towards lyme,

    and it also stated on the report that Infection with HSV, EBV, HCV, and/or syphillis may give a false (+) results...

    my syphillis report came back negative,

    has any one on prohealth got check for lyme ..and by igenex...

    does my report look like i have lyme. thanks guys


    Here are my numberS for IGG

    18 -
    22 -
    28 -
    30 -
    **31 -
    **34 -
    **39 -
    **41 +
    45 -
    58 -
    66 -
    73 -
    **83-93 -


    THESE are my IGM result..
    18 -
    22 -
    **23 25-
    28 -
    30 -
    **31 -
    **34 IND
    **39 IND
    **41 +
    45 -
    58 -
    66 -
    73 -
    **83-93 IND

    [This Message was Edited on 02/13/2010]
  2. spacee

    spacee Member

    I was tested but the person at Igenex said "negative". So, I guess negative.

    One of the CFS researchers got a patient who was being treated for Lyme. No antibiotic improved her. She noticed that she didn't have the same symptoms as the others in the
    waiting room. She went to the CFS doc and his machine tested her for the meds the lyme
    docs put her on and they were making her worse.

    Long story short. She has CFS.

    That is what I mean by tricky.

  3. Nanie46

    Nanie46 Moderator


    Negative is only a reporting criteria, so Negative does not mean you don't have lyme....that's important....many of us who have lyme had a Negative result.

    It is important to look at your band results for clues to Lyme.

    compare your Positive and IND band results to the info on page 7 "Western Blots" of the paper below....


    Note that Dr B says that bands 34, 39 and 83-93 are LYME SPECIFIC!

    I was told by my LLMD that an IND result is like a fingerprint....it is not a dark fingerprint but it is still the same fingerprint...in otherwords it can be made by nothing other than lyme.

    It is band 30-31 that can cross react with viruses according to the Igenex website.

    Also read Dr C's explanation of testing:


    You will note that he also calls bands 34, 39 and 83-93 significant!!

    Since Lyme is a clinical diagnosis, based on history and symptoms....your LLMD will look closely at your history and symptoms and factor in your band results.

    I would guess that he will see good evidence to treat you.

    It is important for anyone being tested to understand what these band results can mean, and that a CDC negative result should not mean Lyme is ruled out.

    Anyone who was tested should make sure they get a copy of their results so they are not just told they are Negative and that's the end of the story so they can suffer forever.[This Message was Edited on 02/14/2010]
  4. AllWXRider

    AllWXRider New Member

    IgM is an early infection, IgG is a later indicator. My IgG was INDecisive on 2 bands.

    Just to be safe, I was treated for 5 months on Doxycycline and Cefuroxime. No change in symptoms. Doxy is no picnic, strong nausea and vomiting.

    Strong antibiotics wipe out your Probiotics, so whatever you do, keep your probiotics repenished daily. I take Kefir daily and it helps a lot.
  5. Nanie46

    Nanie46 Moderator

    It is common for people with chronic lyme to have some positive or IND IgM bands because the infection is active even though it did not begin recently.

    I had a little nausea on doxy at the beginning of my treatment. I have been taking it again for the last 4 months with no nausea at all. I always eat a meal when I take it and I take lots of good probiotics which help alot.
  6. victoria

    victoria New Member

    Remember there are other 'stealth pathogens' transmitted by ticks with or without Lyme... mycoplasma, bartonella, to name just 2. And there are multiple varieties of just those 2.

    unfortunately, the tests for these other bugs are way less reliable (less than 50%), tho many of the symptoms from these stealth pathogens are very similar and difficult to differentiate.

    Bottom line from what I've read/observed will be a clinical trial with abx, and it may take a few tries to find the right abx at that...

    Hope you have a good LLMD, that's the bottom line.

    all the best,

  7. CelticLadee

    CelticLadee New Member

    Hi Street. Yes, I had the test done which also like yours says negative as far as the Igenex and CDC result.

    I will just tell you the ones that were not negative.

    On the IgM which I had done twice with the same result:
    39 IND
    41 ++

    On the IgG it was:
    31 IND
    34 IND
    41 +

    Figured this wasn't good enough to undergo specific LD treatment on a "guess". I need to understand it really is Lyme Disease before I commit to undergo treatment. So like you I am wondering???

    In 2008 I tested high for Cpn so had been on treatment for it. Also thinking the Wheldon protocol probably would take care of the LD. Taking a break for now though. Hard on my gut even when taking several probiotics daily. Have you been tested for any other pathogens? I wonder with a stew of bugs how they cross react on the Western Blot? I wonder what type of cross reactions we can expect?
  8. street129

    street129 New Member

    my dr is on vacation, i requested a copy, till he returns

    right now i am feeling not to good. when he gets back he will let me know what he thinks about the results.
  9. CelticLadee

    CelticLadee New Member

    It can be so hard waiting when you are feeling so bad. Hope he will be back soon for you to get some help. I would be very interested to hear what he says. Would you mind sharing it with me? Rest and relax as much as you can until you see him. My best to you. :)
  10. zena01

    zena01 New Member

    I did the Igenex test and mine was positive on both IGG and IGM.... If I were you, I would go ahead and see a doctor that treats lyme and has experience in it - and ask him or her to rule it out for sure. You have enough indeterminates on important bands and owe it to yourself to completely rule it in or out. There are more false negative tests when you do have lyme than false postive tests when you don't.

    Also, to insist on getting yourself tested you have obviously looked at the extensive lyme symptoms list and had enough to feel you should be tested.

    Don't ask your regular doctor about the test because he/she will say (might say) even with a positive test oh you don't really have that -- even on a positive western blot......mine was positive and also I had a test for Babesia done at the same time which was positive and my "regular" doctor was like "These results are hard to understand, we don't have that problem here so I really don't think there's anything to worry about." heck yes it's something to worry about, especially the Babesia, and especially since I was getting worse month by month and Fibro is not supposed to be progressive. Yes, we have lyme here in my home town and even if we didn't he didn't bother asking me if I'd traveled or if my neighbors dog had.....it's pretty much in every state but I think Montana and that would depend....?

    Actually you are lucky your doctor even gave you your test results. Many get them back, don't understand them, or just see neg, or see igenex pos/cdc neg and tells you you don't have it when you actually do or it might be possible. One double starred band by itself, if on a lyme specific band could say hey, you have it.

    To be sure, please see a lyme doctor.

    [This Message was Edited on 02/16/2010]
  11. munch1958

    munch1958 Member

    I have recovered from this crud after having it close to 30 years. I kept a running list of testing, medications, and supplements in my profile. I am about 95% better than I was in 2006.

    Band 41 is the tail of the spirochete. If Band 41 is positive then a person has a spirochete issue which means that it can only be Lyme spirochetes, syphilis spirochetes or dental spirochetes as all other forms of spirochetes do not cause illness in humans. If your teeth are not rotted out and you've ruled out syphilis then all that is left is Lyme.

    Lyme is a clinical diagnosis. It says that right on the CDC's website. This means it's to be made by a doctor in an office. Tests are just meant to back up the physician's diagnosis because we live in such a wonderful litigious society. That means everyone likes to sue everyone so the doctor must to cover their buns.



    "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"

    *** additional info on the reasons why people test negative: