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Basic, uncomplicated infection with Borrelia burgdorferi- not too ill, respond readily to antibiotics Disseminated, symptomatic disease- usually present longer, and may Need higher doses, longer duration, and also may need IV treatmentsNeed complex antibiotic regimens of long duration Chronic Lyme- Patients ill for > I year, with many complications possible: Immune deficiencies (the beginnings of Chronic Lyme) Emotional and psychiatric issuesAntibiotics alone are not enough- extensive supportive measures are needed End-Stage Lyme- severely ill, and no longer respond to antibiotics, or find Other illnesses and injuries can play a role More Symptomatic and More Difficult to Treat Infection Is No Longer The Primary Problem • Have been ill longer- months to years • Immune deficiencies are present (the • Lyme plus co-infections started the cascade that advanced so far, it could not be stopped by just • Co-infections universal and need to be • Are seeing more and more of these patients • Represents the next evolution in the treatment of • Must address diet, lifestyle, nutritional Chronic Lyme patients- will need a direct supplements, and enforced rest alternating collaboration between Lyme-Literate MDs and CFIDS- with aggressive, formal exercise programs Biological toxins, especially if genetically susceptible: – Lyme and some co-infections produce toxins – Yeasts from yourself and the environment can produce toxins – Other toxin-producing bacteria that take advantage of a weakened host – Heavy metals, insecticides, plastics, etc Nerve damage- both central and peripheral Hormonal deficiencies and receptor changes Psychiatric wild card- may be the next frontier of research and Impossibly complex “chicken and egg” scenario Gradual onset of initial illness, no sweats, 4-week cycles Multisystem, joint involvement, afternoon fevers Herxheimer; otherwise, slow response to onset of antibiotics and slow relapse Gradual onset of initial illness, occasional light night sweats More CNS symptoms than skeletal symptoms, with CNS irritability, GI upset, sore soles, subcutaneous nodules arms and legs, AM fevers, swollen lymph glands Rapid relapse of symptoms if treatment ended too soon or if treatment not optimal Abrupt onset of initial illness, obvious sweats especially at night, cycles every few days Fatigue, global headaches, air hunger, cough, hypercoaguable (responds to Heparin) Very severe Lyme symptoms and poor response of Lyme to otherwise appropriate treatment Rapid onset of initial illness, may be high fevers and rarely spotted rash like RMSF Headaches (knife-like and behind eyes), sore muscles Gradual onset, may be light sweats, symptoms are made worse with exercise Major fatigue and neurological dysfunction, metabolic disturbances, immune damage Found in the sickest and poorest-responding Lyme patients (CFIDS-like, ALS) FIRST, CAREFUL MEDICAL EVALUATION TO REMOVE “LYME BLINDERS” !!! High quality Lyme Western Blot that reports all bands; serial PCRs and urine antigen assays can serve as a back-up Serology, FISH and PCR for Babesia species. Consider blood smear Serology and PCR for Bartonella, Ehrlichia, Mycoplasma, HHV-6, EBV and CMV (Parvo and WNV in acute situations) CD 57 (Lyme), VEGF (Bartonella), coagulation profile (Babesia), heavy metal screens, VCS test with toxin genotyping if necessary Adrenal, thyroid, and pituitary evaluation Cardiac echo looking for diastolic dysfunction (metabolic damage) • Treating Lyme must be the foundation of any successful regimen (“It is always the Lyme”) – Doxy, amoxicillin + probenecid, or cefuroxime • If very sick, you WILL need at least one good – treat for 4 to 6 weeks- must be symptom free for 4 course of IV antibiotics (given carefully) – Orals for 4 to 6 months; be alert to a treatment plateau and be prepared to change the regimen – Need at least six weeks before you see real benefit – Cell wall + intracellular; fluids + tissues; spirals + L- – Alternatives include 6 weeks of IV followed by orals, or a long course of Bicillin, 3 to 4 shots per week, with • Expect to be on Lyme treatment for months – Will need to be on anti yeast regimen, vitamins, and proportional to length and severity of illness) • Always use the highest tolerated antibiotic dose, and – IV therapy for 12+ weeks (Rocephin, IV Doxy, IV Zithro, etc.), PLUS orals given concurrently • Cell-wall drugs only work if blood level is steady for – Bicillin injections (3 to 4 per week) may substitute for • Flagyl needs a steady two weeks to be effective – When IV ends, substitute with Bicillin or a second oral • Ribosomal drugs work best with spiking blood levels – Best orals to combine with Rocephin include Biaxin • Antibiotic combos must consist of dissimilar and Ketek, with Doxy less effective, and Zithro and medications (different mechanisms of action) • Track fluctuations in symptoms and the 4-week cycles- give any regimen 6 to 12 weeks before you – Aggressive supportive therapy as well • Most IVs work better if given in pulsed doses• A heparin lock is preferred over a PICC line • Atovaquone (Mepron, Malarone) in high • Must be free of signs of active infection for at least two months and have a CD-57 above 130 before antibiotics are stopped – Usually azithromycin + artemesia derivatives – Near end of treatment course, hold antibiotics until – Clindamycin and gentamicin are alternatives you relapse (usually 3-4 weeks), then resume them at – Concurrent tetracyclines (TCN, doxy, mino) are NOT full dose for 4 to 6 weeks, then repeat the cycling • For established infections, 5 months of – Takes three cycles or so to be successful – Tolerance issues: tendon pain and damage is possible as is insomnia • Least difficult to treat of the chronic – Must have good tissue antioxidant levels, high magnesium stores, and Levaquin cannot be given concurrently with antibiotics in erythromycin family • Tetracycline drug for two to four weeks – Azithromycin, clarithromycin, telithromycin Better outcome if Levaquin is combined with cell-wall drugs – Metronidazole, etc.; fluconazole, etc.
Alternatives to Levaquin include combinations with rifampin, sulfur, clarithromycin, and possibly streptomycin and Treat for months- at least two, and often need more than four.
• VERY IMPORTANT AND SERIOUS!!! Is the • Valgancyclovir (Valcyte) in high doses • Best regimen and appropriate duration of • Need a minimum of three, and possibly six • Most regimens include a tetracycline + • Often there is a sudden improvement after • Most experts recommend years of therapy • Uncertainty over how to determine which intracellular antibiotics, but not enough data – Yes if + PCR; yes if + IgM in high titer – What about + IgG? Only treat high titers? How high? • Nerve damage must be documented in order to get • IVIG is the only proven method to heal the damaged • Unclear whether is best to give alone, or along with – Sweat, increased bowel frequency, ?clay • Unclear whether is best to treat early on or later in • Very clear that this may be an essential treatment for those with autonomic dysfunction or intractable pain • IVIG is also indicated for IgG deficiency – Attack on glands that produce the hormones (example- – Blockage of hormone receptors (example- pancreas) – Mitochondria: NT-Factor, Co Q-10, trace – Glandular exhaustion from over work in setting of poor nutrition – Total imbalance of normal feedback mechanisms – Methylation cycle- alleviate block (“Folapro”) – Supplement with methylating agents (methyl • Accurate diagnosis using advanced methods B-12, MSM)- but be careful to remove any • Careful supportive treatments designed to restore, excess mercury first (don’t want to create • Frequent re-testing and adjustments to regimen IMPORTANT BOTH AS A CAUSE OF WORSE ILLNESS, AND AS A • Monoclonal antibodies to assist with Any severe illness can bring out hidden or unresolved conflicts – Affect how we see ourselves and how we deal with being sick– Impact on doctor-patient relationship – Often impacts overall compliance with regimen– Reinforces role of victim and may impact ability to advocate for oneself • FISH test available for more species of Chronic illness often results in grief reaction – Loss of health, loss of career or place in circle of family and friends, loss – Loss of joy– Also can affect compliance and relationship with caregivers Very delicate and sensitive counseling is needed and should not be ignored- is as important as taking antibiotics or any • Now able to biopsy small nerve fibers • Reversal of nerve damage with IVIG has • Still are horrendous political issues • Testing still cannot be used to adequately – In theory, can assist other antibiotics given categorize a patient to know all the problems – Should work for most of the co-infections • Unclear which treatment regimens are the best, or even to know who should get what • NOBODY is conducting meaningful research – Expensive and insurance coverage is problematic • Real world picture of real people- no current journal article discusses any of the chronic cases we see – Co-infected, toxic, dysregulated, immune deficient, damaged • Is the only way to sort through a literal mountain of • Pediatric registry has been created and – too complex an illness to place people into neat cubbyholes • MUST discover better diagnosis and treatment • MUST publish results in top medical journals • MUST win this on “their” turf or it will not be a real • Is the only way to broadcast the truth to the wide • Is the only way to protect our doctors• NEED MORE PHYSICIANS TO PARTICIPATE • Action of Connecticut Attorney General – Re-read my “Guidelines” and try to figure out • Go through your history, symptoms, prior diagnoses, test results, and prior treatments • FABULOUS book, “Cure Unknown” by • Do you have co-infections?• Are you responding to treatment as expected? • Does it make any sense?• Take notes as you do this, then re-organize them into concise lists of the important points to share with your doctors • May need to go over history or symptoms • Include them in your list of people to again with your doctor to be sure you aren’t expected? If not, then perhaps a change is • Are you following the diet? Are you taking the recommended nutritional supplements? Are you exercising? Are you getting enough • Publicize Blumenthal’s findings, and – New “guidelines” are in the works! • Educate more friends, family and doctors • Attend the upcoming Lyme meetings next • Insist that you be included in the Lyme

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