I am so tired of going to doctors. I am considering going to Dr. Harris in AG at Tod Thoring's office. I don't know what the rules are about talking about doctors on this blog......
I spend a considerable amount of money seeing a doctor in San Luis and I had a very bad experience. I wish i had been warned.
So I am asking anyone to respond who has had a bad experience with Dr. Harris.
Friday, July 23, 2010
Tuesday, July 20, 2010
You CAN have your chocolate and eat it too...
Hello everyone!
We know how important it is to eliminate refined/processed sugars from our diets... For chocolate lovers who haven't tasted fine chocolate except as an occassional treat, there is a remedy. However, as with all things, we have to be careful and balance everything and not overindulge.
Here's the scoop:
Endangered Species brand chocolate that you can buy at health food stores as well as on-line at http://www.chocolatebar.com/ sells a 3oz Extreme Dark Chocolate bar that is 88% cocoa - all natural and organic. One-half of a bar has only 5g of sugar, which means you can break off a small square and let it melt in your mouth (you don't chew dark chocolate) for several minutes, and you've not only enjoyed a deeply rich chocolate experience that is so satisfying, you just gave yourself a nice dose of seratonin - that good feeling that women especially,(sorry guys - you know... the cycle) zone in on. But of course, everyone benefits because there are benefits in cocoa. Filtered beet sugar is used in a tiny amount in this dark rich bar.
You can also recognize this bar by the picture of the black panther on the wrap. The bar also states 88% cocoa on the front.
10% of net profits are donated to help support species, habitat, and humanity - fair trade.
I've been doing this a few days a week for years. You could actually have a small square daily. Only one small square is enough. Find a time of day to really relax and enjoy it to the fullest - it's a ritual for me... If you love this, you'll not care to look at anything that resembles milk chocolate, which is mainly sugar and of no real benefit.
Passin' it on... Enjoy.
Be well and live in beauty! Triza
We know how important it is to eliminate refined/processed sugars from our diets... For chocolate lovers who haven't tasted fine chocolate except as an occassional treat, there is a remedy. However, as with all things, we have to be careful and balance everything and not overindulge.
Here's the scoop:
Endangered Species brand chocolate that you can buy at health food stores as well as on-line at http://www.chocolatebar.com/ sells a 3oz Extreme Dark Chocolate bar that is 88% cocoa - all natural and organic. One-half of a bar has only 5g of sugar, which means you can break off a small square and let it melt in your mouth (you don't chew dark chocolate) for several minutes, and you've not only enjoyed a deeply rich chocolate experience that is so satisfying, you just gave yourself a nice dose of seratonin - that good feeling that women especially,(sorry guys - you know... the cycle) zone in on. But of course, everyone benefits because there are benefits in cocoa. Filtered beet sugar is used in a tiny amount in this dark rich bar.
You can also recognize this bar by the picture of the black panther on the wrap. The bar also states 88% cocoa on the front.
10% of net profits are donated to help support species, habitat, and humanity - fair trade.
I've been doing this a few days a week for years. You could actually have a small square daily. Only one small square is enough. Find a time of day to really relax and enjoy it to the fullest - it's a ritual for me... If you love this, you'll not care to look at anything that resembles milk chocolate, which is mainly sugar and of no real benefit.
Passin' it on... Enjoy.
Be well and live in beauty! Triza
Sunday, July 18, 2010
Copy of notes from Dr. B's lecture
I know this is a lot of info - but very important, I think. Note, especially the last sentence!
Dr. Burrascano's notes from a talk:
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 ½ of cases
• Subtle onset of nonspecific “viral-like” symptoms often obscure the diagnosis
• Blood test may miss up to ½ 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-INFECTIONS
– 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.
INTERPRETATION/DIAGNOSIS
• Lyme Borreliosis Highly Likely: 7 or above
• Lyme Borreliosis Possible: 5-6
• Lyme Borreliosis Unlikely: 4 or below.
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
Dr. Burrascano's notes from a talk:
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 ½ of cases
• Subtle onset of nonspecific “viral-like” symptoms often obscure the diagnosis
• Blood test may miss up to ½ 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-INFECTIONS
– 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.
INTERPRETATION/DIAGNOSIS
• Lyme Borreliosis Highly Likely: 7 or above
• Lyme Borreliosis Possible: 5-6
• Lyme Borreliosis Unlikely: 4 or below.
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
Saturday, July 17, 2010
Where to get a PICC line
I had a PICC line inserted almost three weeks ago and wanted to post the info here for anyone needing it in the future. Dr. Paul Cipriano of Minimally Invasive Surgical Procedures put in the line. He is in San Jose - 408-918-0405. He works a lot with Dr. Harris, but I bet he would do it for anyone with an order. They just asked me to bring the order with me.
I called and had an appointment in 1 1/2 weeks. They got prior authorization from Anthem Blue Cross, much to my amazement. I didn't think they would pay for it. They are out of network. He did the procedure at his facility. It took about an hour and was very easy.
I am getting Rocephin from Infuserve America - 800-886-9222 for $39/total including all supplies. I didn't try to get insurance to pay for the first month because I had no luck with my daughter before. But with her and her IV Invanz I have been pay Infuserve and they bill my insurance. Periodically they do pay for something and I get a credit on my credit card for anywhere from $100-$600. So, they may get Anthem to pay for part of it down the line.
I hope this info is helpful to someone.
Marla
I called and had an appointment in 1 1/2 weeks. They got prior authorization from Anthem Blue Cross, much to my amazement. I didn't think they would pay for it. They are out of network. He did the procedure at his facility. It took about an hour and was very easy.
I am getting Rocephin from Infuserve America - 800-886-9222 for $39/total including all supplies. I didn't try to get insurance to pay for the first month because I had no luck with my daughter before. But with her and her IV Invanz I have been pay Infuserve and they bill my insurance. Periodically they do pay for something and I get a credit on my credit card for anywhere from $100-$600. So, they may get Anthem to pay for part of it down the line.
I hope this info is helpful to someone.
Marla
Gluten-Free almond Bread recipe
I know many of us are on gluten-free diets. I have been having fun with almond flour. Here is a quick and easy recipe to try.
ALMOND BREAD (GRAIN & DAIRY FREE)
Basic Ingredients for Basic Loaf:
· 1 ½ cups blanched almond flour
· ¾ cup arrowroot powder or tapioca flour
· ¼ cup flax seed meal
· ½ tsp. baking soda
Mix dry ingredients together in medium bowl.
· 4 eggs
· 1 tsp. agave nectar
· 1 tsp. apple cider vinegar
Blend eggs for 3-5 minutes, then add agave and vinegar.
Add dry ingredients and mix. Add optional extras (below)
Pour batter into greased medium sized loaf pan
Bake at 350 for 25-35 minute, until toothpick inserted in center is clean.
Cool and serve. Good toasted with butter.
Optional Extras:
· ¼ cup chopped walnuts
· ¼ cup chopped hazelnuts
· ½ cup chopped pistachios
· ¼ cup sunflower seeds
· ¼ cup sesame seeds
About Blanched Almond Flour: you can buy it this way at New Frontiers or you can put ¾ - 1 cup raw almonds into a heavy duty mixer like a VitaMix or Blend-tec and blend on high until you don’t see any ‘dust’ around the blender canister – just a short time. It is not as fine, but it works for this recipe. I hear TJs has almond meal available too.
You can easily double the recipe and bake in a square baking dish (8x8?)
Check this website for more recipes and a great cookbook http://www.elanaspantry.com/
Marla
ALMOND BREAD (GRAIN & DAIRY FREE)
Basic Ingredients for Basic Loaf:
· 1 ½ cups blanched almond flour
· ¾ cup arrowroot powder or tapioca flour
· ¼ cup flax seed meal
· ½ tsp. baking soda
Mix dry ingredients together in medium bowl.
· 4 eggs
· 1 tsp. agave nectar
· 1 tsp. apple cider vinegar
Blend eggs for 3-5 minutes, then add agave and vinegar.
Add dry ingredients and mix. Add optional extras (below)
Pour batter into greased medium sized loaf pan
Bake at 350 for 25-35 minute, until toothpick inserted in center is clean.
Cool and serve. Good toasted with butter.
Optional Extras:
· ¼ cup chopped walnuts
· ¼ cup chopped hazelnuts
· ½ cup chopped pistachios
· ¼ cup sunflower seeds
· ¼ cup sesame seeds
About Blanched Almond Flour: you can buy it this way at New Frontiers or you can put ¾ - 1 cup raw almonds into a heavy duty mixer like a VitaMix or Blend-tec and blend on high until you don’t see any ‘dust’ around the blender canister – just a short time. It is not as fine, but it works for this recipe. I hear TJs has almond meal available too.
You can easily double the recipe and bake in a square baking dish (8x8?)
Check this website for more recipes and a great cookbook http://www.elanaspantry.com/
Marla
Friday, July 9, 2010
Hyperbaric Oxygen
I am getting Hyperbaric oxygen treatments in Solvang and I can't believe the difference that I feel. I no longer have pain/pressure in my head all the time. I can even bend over and don't feel a rushing into my head. From what I have read, most Lyme patients have a pretty bad herx but I am on detox herbs from the doctor at the HBOT clinic and I feel pretty steady.
Has anyone tried hyperbaric, and if so, what was the long term results?
Has anyone tried hyperbaric, and if so, what was the long term results?
Thursday, July 1, 2010
The Natural State Of Meditation
Happy July 1st everyone!
The Natural State Of Meditation, this month's blog, may be of interest to you as a part of the healing and balancing of daily life. There are some simple steps and 2 UTube videos - the first one, particularly humorous, with Eckhart Tolle. Go to http://womanofthewind.blogspot.com/
Enjoy!
Be well! Triza
The Natural State Of Meditation, this month's blog, may be of interest to you as a part of the healing and balancing of daily life. There are some simple steps and 2 UTube videos - the first one, particularly humorous, with Eckhart Tolle. Go to http://womanofthewind.blogspot.com/
Enjoy!
Be well! Triza
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