I have a copy of Dr. B's handout from his lecture in Green Bay last month. New virus found, good description of co infections etc. Please send your email and I will forward them to you
Posted by tick battler (Member # 21113) on :
Thanks so much for sending these! I wonder if you can somehow attach them here?
One interesting point I read - I have been researching borna disease virus as a possible coinfection in one of my boys and was surprised to see that Dr. B now mentions it as a virus associated with lyme!
tickbattler
Posted by LymeXtu (Member # 24590) on :
Yes momofthree Thanks again for taking the time to get Dr B's info out to us, my LLMD ( and nurses in his office ) were happy to get these too !!
Posted by Dekrator48 (Member # 18239) on :
Thank you very much for sending this!!
Posted by bcb1200 (Member # 25745) on :
Thanks for sending. I was particularly interested in his discussion on CD-57 as a way of measuring progress and level of lyme involvement.
The co-infection info was great, too!
Posted by momofthree (Member # 19490) on :
I don't know how to attach something here. If anyone does please let me know. Maybe one of the moderators can do it?
Posted by bcb1200 (Member # 25745) on :
I have copied and pasted below. GREAT STUFF!!
___________________
WHAT IS LYME DISEASE? Lyme disease is the illness that results from the bite of an infected deer tick STATISTICS * Fastest growing vector-borne infectious disease in the USA * CDC estimates are over 200,000 new cases per year! * In the USA, rate of new cases exceeds that of HIV/AIDS * Anyone can get it- affects all ages, both genders, and even our pets LYME IS NEARLY EVERYWHERE! * Lyme has been reported in all 50 states * Present worldwide- every continent except Antarctica * In many areas, lawns have higher tick concentrations than the surrounding woods * Ticks can survive down to 17 degrees below zero! (may still get tick bites in wintertime) * Most people are bitten during usual daily activities * Tick bite is painless * Tick is so tiny, it can be missed BASIC FACTS * Only 16% recall a tick bite * ``Classic'' rash (Erythema Migrans) occurs in only 1/3 to 1/2 of cases * Subtle onset of nonspecific ``viral-like'' symptoms often obscure the diagnosis * Blood test may miss up to 1/2 of cases!!! * Spinal fluid serology positive in only 9%!!! (91% false negative rate!!!!) MORE NEW STRAINS OF BORRELIA IDENTIFIED * A new strain of Lyme Borrelia called SCW-30h has been found in the USA, in all areas. * Another new one, B. americana has been found in the South from Texas to the Atlantic * These are being investigated to find out if they can make you ill, and if so, how best to treat it. * ?atypical Lyme; seronegative Lyme INCREDIBLY COMPLEX! * Ticks may carry DOZENS of potential pathogens- NATURE'S DIRTY NEEDLE! * One tick bite can result in simultaneous co-infections by different germs - Spirochetes (Lyme) - Parasites (Babesia) - Bacteria (Ehrlichia, Anaplasma) - Mycoplasmas (Gulf-War and Chronic Fatigue germs) - Viruses (T.B.E., West Nile Virus) - Worms (nematodes)? XMRV- A New Retrovirus- Is This Another Co-Infection? * Xenotropic murine leukemia virus-related virus (XMRV) was first isolated from prostate cancer patients * Dr. Judy Mikovits looked for XMRV in CFIDS patients. She found it in only 3.7% of healthy controls but 95% of CFIDS cases were antibody positive and 68% were PCR-positive. Overall, 98% tested positive! * Recently, the FDA has independently confirmed this study * She and collaborating clinicians also found XMRV in Lyme, fibromyalgia, atypical MS and autism * This is a retrovirus (as is HIV) and theoretically can cause or add to many symptoms and immune defects as seen in these illnesses, as well as in Lyme * Three avenues of treatment are being studied: - Anti-retroviral agents, as used in HIV - Artesunate - Antiviral herbs LYME- WHY THE CONCERN? ILLNESS CAN VARY FROM MILD TO VERY SEVERE - Early Lyme, if promptly recognized and appropriately treated, can be cured - Untreated Lyme may progress, causing a very severe illness and disability - Can be latent for months to years, and later result in catastrophic, permanent damage - Deaths have been reported * Most symptoms are non-specific * Mild symptoms often are dismissed * Many medical errors due to lack of diagnosis * More medical errors from incorrect diagnoses and unnecessary or dangerous treatments - Fibromyalgia, ME/CFS, depression, multiple sclerosis, ALS (Lou Gherig's Disease), malingering, Munchausen * Often, patients see literally dozens of doctors and undergo an encyclopedia of tests, Lyme is missed, and they still have no diagnosis * When medical doctors cannot find a cause for the complaints, they refer patients to a psychiatrist (blame the patient for his/her illness!) * Can be transmitted from mother to child TYPES OF LYME DISEASE * ``Classic'' Lyme (my definition) includes: - Early localized - Early disseminated - Late disseminated * Chronic Lyme Disease - Illness present for one year or longer - Is a totally different disease! - May not be curable! DIAGNOSING LYME A difficult task! SYMPTOMS * Headaches, photophobia, stiff neck * Fatigue, intolerance of exercise * Aches in and around joints * Numbness, tingles, sense of vibration * Poor coordination, imbalance, light-headed, need to sit or lie down, especially in afternoon * Forgetful, confused, speech errors, ADD-like * Sleep disturbance * Neuropsychiatric- anxiety, panic attacks, depression, rage attacks, antisocial behavior * Intolerance of stress, alcohol, sleep deprivation (any of these will make all symptoms worse) BLOOD TESTING * LYME (Borrelia burgdorferi) - Serologic tests (ELISA, Western Blot) - Sensitivity is poor: Commercial labs: 50% Private reference labs (Igenex): 70% - PCR- also poorly sensitive- less than 30% * Even a spinal tap serology will miss over 90% of cases! * CO-INIFECTIONS - Situation is worse- pick up 30% at best!!!! * Conclusion: LYME IS A CLINICAL DIAGNOSIS ERYTHEMA MIGRANS- TYPICAL ``BULLSEYE'' RASH * Expands over time, Painless, Raised, May be warm RINGWORM - Scaly center - Not raised or warm SPIDER BITE - Painful! - Necrotic center MAKING A CLINICAL DIAGNOSIS: THE POINT SYSTEM * Tick exposure in an endemic region 1 * History consistent with Lyme 2 * Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded): * Single system, e.g., monoarthritis 1 * Two or more systems 2 * Erythema migrans, physician confirmed 7 * ACA, biopsy confirmed 7 * Seropositivity 3 * Seroconversion on paired sera 4 * Tissue microscopy, silver stain 3 * Tissue microscopy, monoclonal IFA 4 * Culture positivity 4 * B. burgdorferi antigen recovery 4 * B. burgdorferi DNA/RNA recovery 4
CD-57 COUNT (Natural Killer Cells) * Low counts seen in Chronic Lyme when the infection has been active greater than 1 year * Reflects degree of infection * CAN BE A SCREENING TEST! * Predicts a relapse if low when antibiotics end * Must use method of LabCorp (normal is greater than 180) - Less than 20- severe illness - 20-60- most common result in chronic patients - Greater than 60- Lyme activity minimal - Greater than 120- Relapse NOT likely after treatment ends EARLY LYME * Rapid diagnosis is critical- fully curable at this stage if treated properly - Start treatment as soon as possible - If a rash is present, start treatment immediately! * Do not wait for blood tests- Tests may take weeks to become positive or may NEVER get a positive test! - If no rash, but high suspicion, treat, observe clinically, and retest serially TREATMENT OF EARLY LYME Oral antibiotic for 4 to 6 weeks * Shorter courses associated with a linear rate of treatment failures * Be sure to use full doses! - Lyme has already spread to other areas - Already in the central nervous system - Inadequate treatment may worsen later illness (``survival of the fittest'') * APPROPRIATE TREATMENT OF EARLY LYME MAY PREVENT CHRONIC LYME DISSEMINATED LYME * By definition, present for more than six weeks, but less than one year * Initial non-specific symptoms gradually change to involve multiple discrete organ systems: - Joints (pain, stiffness, subtle swelling) - Peripheral nerves (numbness, tingles, weakness, vibration) - Central nervous system (``brain fog'', impaired short-term memory, confusion, mood disorders) - Original, general symptoms may persist (headache, fatigue, sweats, etc.) * Specific patterns develop: - Monthly cycle of waxing and waning illness - Symptoms affecting major organ systems ``migrate''- move around TREATMENT OF DISSEMINATED LYME * Start with orals if possible * If very ill, pregnant, or cannot tolerate oral antibiotics, then may need IV therapy for 6 to 12 weeks, followed by oral therapy if the infection is still active * May need combination therapy (co-administration of two or more dissimilar antibiotics) * Duration of treatment often mirrors duration of illness- treat for 6 weeks to 6+ months * Must be free of signs of active infection before treatment ends CHRONIC LYME DISEASE DEFINITION- ILL WITH LYME FOR ONE OR MORE YEARS * Is the start of clinically significant immune breakdown - Decreased function and numbers of all three arms of immunity: B, T and NK cells - Elevated cytokine levels cause many of the symptoms, and further impair the immune response - Because most Lyme tests are serologies, which measure immune response to B. burgdorferi, a weakened immune system may result in more false negative tests * PARADOX: The sicker patient is more likely to have a negative (non-reactive) Lyme serology! CLINICAL FEATURES Very complex disease: * Difficult to diagnose * Broad spectrum of illness, from subclinical to severely debilitating, and rarely, can be fatal * Extremely difficult to treat the infections * Extremely difficult to manage totality of complaints * May not be curable in some- why is a chronic illness CHRONIC LYME * Primary symptoms of Chronic Lyme are NEUROLOGICAL (nearly every patient) - Encephalopathy and encephalitis, Peripheral and autonomic neuropathy, Demyelination- central and peripheral * Inflammatory arthritis in only 5% * Myositis (muscle inflammation) rare, and Carditis (heart inflammation) also rare * Immune suppression allows co-infections to flourish, and opportunistic infections (yeast, etc) become more of a problem CHRONIC LYME IS MORE THAN AN INFECTION * Immune ``Dysregulation'': Immune activation & Immune suppression * Neurotoxins, Hormonal disturbances, Damage to organs, tissues, cells and DNA * Nutritional disturbances, Metabolic effects TREATMENT OF CHRONIC LYME * Antibiotics, usually in combinations - Antibiotic synergism, cover all infected tissues, cover alternate forms of Bb, and co-infections * Nearly every chronic Lyme patient is a candidate for IV antibiotics * Supportive treatments - Vitamins, probiotics, exercise, low carb diet, no alcohol, enforced rest * If neurologic symptoms do not clear, there is the option to treat with IVIG INDICATIONS FOR INTRAVENOUS THERAPY * Abnormal spinal fluid (↑WBC, ↑Protein) * Synovitis with high ESR * Illness for more than one year * Age over 60 * Acute disseminated illness in first trimester * Acute carditis * Documented immune deficiency * Prior use of steroids or other immunosuppressants * Failure or intolerance of oral therapy
DURATION OF ANTIBIOTIC THERAPY- CONTROVERSIAL! * Restrictive guidelines by Infectious Disease Society of America (IDSA) - Maximum is one month; rarely will repeat - No allowance for physician's clinical judgment or degree of illness of the patient - No consideration of co-infections - Under investigation by the Connecticut Attorney General! * More realistic guidelines by International Lyme and Associated Diseases Society (ILADS) - Treatment is individualized, based on patient need and response, and may have to be given for months to years CHRONIC LYME- Treatment Issues * In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy * Relapses do occur and retreatment is often needed * Repeated or prolonged antibiotic therapy usually is necessary * High doses of antibiotics are needed, and blood levels should be confirmed wherever possible * Antibiotic combinations usually are necessary * Check for co-infections and immune status, and treat appropriately * May need to rotate through different regimens based on response * If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely * May not cure the infection, and may need repeated or open-ended maintenance therapy * Signs of persistence of infection: - continued fevers, synovitis - four week cycles, migrating symptoms - PCR positivity and low CD-57 counts * As symptoms wind down, I DO NOT cut the dose, for resistance may develop * Aggressive supportive therapy is required- and search for any other possible cause of a weakened host: - Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress * Progressively increase exercise program as the symptoms of Lyme decrease - Exercise is vital and required, or a full recovery will not occur - Not exercising will increase risk of a relapse CO-INFECTIONS IN LYME Nearly universal in chronic Lyme * Symptoms more vague, and overlap * Diagnostic tests LESS reliable * Co-infected patients are more ill and more difficult to treat * Lyme treatments do not treat Babesia, Bartonella or viruses * One reason for ``treatment-resistant'' Lyme * Bartonella, Babesia, Anaplasma, Ehrlichia, Mycoplasma, Viruses, Nematodes? * ?Others BARTONELLA-LIKE ORGANISMS (``BLO'') * More prevalent in NJ ticks than even Borrelia! * Clinically, seems to be a different species than ``cat scratch disease'' (?Tularemia) * Persistent CNS symptoms despite Lyme Rx * CNS symptoms out of proportion to physical - Irritability, anxiety, insomnia, seizures, rage attacks, encephalopathy-encephalitis, psychiatric syndromes, - Also gastritis, rashes, tender skin nodules, sore soles, AM fevers, light night sweats * CSD serologies and PCR tests are insensitive! - Miss up to 80% of clinically defined cases * Bartonella FISH soon to be available BARTONELLA-LIKE ORGANISMS- TREATMENT- * Levofloxacin (Levaquin) is drug of choice- 500 mg daily, and consider adding a proton pump inhibitor * Cell wall drugs suppress but do not kill BLO, but may synergize with fluoroquinolone * Rifampin and metronidazole may be alternatives * Erythromycins alone totally ineffective, and may inhibit concurrent fluoroquinolone. However, may work if given with rifampin * Response to doxycycline alone variable but usually poor- may be combined with rifampin * Combination of rifampin + Bactrim has had some success * Treat for 1 to 3+ months if tolerated PIROPLASMS (Babesia species) * Many different species found in ticks (13+). Can test for only B. microti and B. duncani * B. duncani more difficult to treat than B. microti * Diagnostic tests insensitive * Chronic persistent infection documented * Infection is immunosuppressive * Renders Lyme more severe and more difficult to treat, with worse symptoms and more organ damage BABESIOSIS- ACUTE AND CHRONIC INFECTIONS * Acute- - Abrupt onset of symptoms; no rash - Spectrum of mild to severe presentations - Can be fatal! * Chronic- - Symptoms blend with those of Lyme and diagnosis often missed BABESIA TESTING * Standard smears useful only for acute infections ! - Smears universally negative after two weeks * Enhanced smears- - Buffy coat - Prolonged scanning, with digital photography * Fluorescent in-situ hybridization assay - Fluorescent-linked RNA probe - Increases sensitivity 100-fold over conventional Giemsa-stained smears * PCR and serology * All methods are of low yield, but may not overlap! Therefore, recommend use all available tests DIAGNOSING ACUTE BABESIOSIS * Acute onset of symptoms - Sweats, high fever, chills, headache, dark urine, acute hemolytic anemia, severe illness * Blood smear usually reliable * Serologic tests may convert within one week, but not always reliable * Rule out other acute infections DIAGNOSING CHRONIC BABESIOSIS * Acute onset of initial illness * Incomplete response to Lyme treatments * **Symptoms more severe than expected with Lyme alone** * Also: - Marked night sweats which may cycle every several days - Air hunger, cough - Severe persistent headaches - Unrelenting fatigue - Off balance- ``tippy'', not vertigo * ANY positive test in proper clinical setting TREATING BABESIOSIS * Is a parasite, so is treated differently than Lyme, but can be treated concurrently while on Lyme medications * Mepron (atovaquone) 5+ cc bid, plus azithromycin 600 mg daily for 4 to 6 months minimum, but higher doses may be needed, especially with B. duncani * Oral clindamycin + quinine rarely used as first line * Malarone (atovaquone + proguanil), 6+ tabs daily * Added sulfur (Bactrim DS), 2 to 4 daily * Added metronidazole (Flagyl), 750 to 1500 mg/d * Always add artemesia or artemesenin but must be given in cycles- 2-3 weeks on, and 1-2 weeks off * No Co-Q 10 * In extremely difficult cases, IV clindamycin may be helpful EHRLICHIOSIS AND ANAPLASMOSIS * Less common than the other tick-borne infections * Acute and chronic forms * Acute- rarely, causes a spotted rash - Abrupt onset, high fever, muscle pain, headache, low WBC count, elevated liver enzymes * Chronic- - Headaches and muscle soreness - Persistent leucopenia - Test with serology, PCR or smear * Treat with doxycycline for 2 to 4 weeks * Fluoroquinolones and rifampin MAY be (poor) alternatives MYCOPLASMA * ``Chronic fatigue'' germ * Not clear its origin or source * More often seen in the immunosuppressed * Test with serial PCRs (still insensitive) * Treat with doxycycline and/or a fluoroquinolone, and add hydroxychloroquine (Plaquenil) * Erythromycins & rifampin, with added hydroxychloroquine OK but less effective * Treat for three years? * Restoring better immune function is probably the best approach OTHER CO-INFECTIONS Especially in the chronic Lyme and immunosuppressed patients * Viruses: TBE, West Nile, HHV-6, CMV, other herpes, bornavirus * Chlamydia, Yeasts, Q-fever?, XMRV?, Others? SORTING IT ALL OUT ! * LYME- - Multisystem, 4-week cycles, afternoon fevers, no sweats, gradual onset of illness * BARTONELLA- - CNS out of proportion to skeletal - CNS irritability, GI, Sore soles, sub Q nodules, AM fevers, light sweats, gradual onset of illness * BABESIA- - Sweats, fatigue, global headaches, air hunger, cough, hypercoaguable, cycles every few days, rapid onset, very severe Lyme symptoms * EHRLICHIA- - Headaches (knife-like), muscles, low WBC, elevated liver function tests, rapid onset * MYCOPLASMA- - Fatigue, poor exercise tolerance, slow or minimal response to antibiotics, lots of neuropathy TREATMENT More Than Antibiotics! * Enforced rest, No caffeine, No alcohol, No smoking at all, Low carb, high quality protein diet * Daily vitamins and other nutritional support, Maintain hydration, Exercise program, Never any steroids! CLINICAL MEDICINE IN THE 21ST CENTURY: LYME DENIALISM * If the test does not show it, it does not exist * If organized medicine did not discover it, it does not exist * New illnesses become real only after years or decades of clinical trials * But- will not perform clinical trials on something that does not exist! WHAT MUST BE DONE * EDUCATION: Become your own advocate * AWARENESS: Keep up with not only the latest medical news, but also the political developments * ADVOCACY: ``We will not go away''; Support those who support you * NEVER GIVE UP
Posted by seekhelp (Member # 15067) on :
Why can't this genius be my doctor? Posted by bcb1200 (Member # 25745) on :
Send this to your doctor. Follow it. It works!
Posted by steven (Member # 13101) on :
Its so sad to read this:
Chronic Lyme "may not be curable!"
Posted by SForsgren (Member # 7686) on :
All depends on how you define "cure". You can't get rid of many viruses either but you may never have symptoms of them once your immune system has them well-managed. It's similar in my opinion.
Posted by glm1111 (Member # 16556) on :
Unless I missed seeing it, I can't for the life of me understand why this dr is not mentioning the possible co-infection of Adult Filarial Worms.
After all Willy Burgdorfer did find them first when he dissected the ticks and as an aside found the borrelia.
Is Dr. K. and his followers the only LLMD that is aware of and treats his patients for this? I would have never guessed that I was infected with these worms after 25 yrs, but I saw them with my own eyes after aggressive antiparasitic tx.
BTW, I met and am in touch with someone from this area who after being on abx for 9 mos (then relapsing) is doing aggressive antiparasitic tx and seeing them also. I know I keep bringing this up, but it just doesn't make sense to me why this is so ignored.
Gael
Posted by seekhelp (Member # 15067) on :
Like many say these docs are absolutely ignorant about parasites if not taught in MD school.
Posted by hadlyme (Member # 6364) on :
"Is Dr. K. and his followers the only LLMD that is aware of and treats his patients for this?"
Yes.
Posted by Haley (Member # 22008) on :
Thanks,
I think I just came up with my new protocol to discuss with my doctor tomorrow.
Posted by jwick25 (Member # 15190) on :
Thanks for posting this!
I didn't see the mention of Ceftin or that class of drugs for treatment.
This is what my LLMD gave me for lyme. Should I be worried that it's not on this list?
Posted by JR (Member # 16898) on :
Very helpful- thanks
Posted by blinkie (Member # 14470) on :
jwick-you should not be worried. I did ceftin/zith throughout my pregnancy. When I was done, I was much, much improved.
Posted by Consuelachacha (Member # 26538) on :
This is one of the most enlightening posts I have ever read. Thank you so very much. I am printing this out and adding to my LYME file. Perhaps someone will "believe" or "help" or "care", something.
Thank you!!! Posted by massman (Member # 18116) on :
Thanks bcb.
Gael - seems like lyme and non-parasitic co-infections change the internal terrain so much it is a great place then for larger parasites to thrive.
Posted by CherylSue (Member # 13077) on :
up
Posted by Sheryl777 (Member # 17804) on :
What is bartonella FISH that is soon to be available?
Posted by clueless (Member # 30019) on :
Brillant!! Thanks bcb!
All I have to do now is understand it all, and then translate it into French for our French Literate Lyme Docteur!
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