"my lyme disease is not the IDSA lyme disease"

This Facebook movement, "My Lyme Disease is not the IDSA Lyme Disease" is a reaction to the anti-Chronic Lyme disease article that appeared in the Chicago Tribune on Dec. 8, 2010. (Google "Chronic Lyme Disease: A dubious diagnosis" if you want to read the article)

People are encouraged to tell their own Lyme stories either on a blog or on Facebook (use the "Notes" section and change your privacy settings). Post your link on Facebook: Lyme Friends.

This article was so disturbing to me. It also ran in the LA Times and Hartford Courant, which are owned by the same company. I posted comments on-line to all three papers, as well as sending emails to the authors and Trib editor.

I decided to participate in the movement, so I started a blog with my story. Out of respect for my daughter's privacy (which is very important to her these days) my blog is private.

I encourage you to tell your story. You can do it anonymously through a blog or on Facebook.

Marla

Wisdom from Elizabeth Edwards

I love this quote from Elizabeth Edwards. She was dealing with cancer, but the concept works well with chronic illness too:
“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
It's sad that she died, but her resilient spirit will continue on.

Hypercoagulation, another charming feature of Lyme disease!

Hi, I'm JoAnn....a relatively new member of SLO Lyme.  I asked Ginny if I could post today about hypercoagulation ("thick blood"), because I just recently found out that I have this problem.

Hypercoagulation is actually very, very common in people who have Lyme disease.  I read an article where one Lyme doctor actually said that 90% of his Lyme patients tested positive for thick blood.  Apparently it's one of the many clever tactics that the spirochetes use to avoid Lyme treatments....they increase the various clotting factor levels (fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2, and Factor II (prothrombin) activity) in your blood and this creates little clumps of fibrin that cling to the walls of blood vessels.  The bacteria use these fibrin nests to hide in....this helps them survive.

Of course, hypercoagulation can lead to many other serious health problems, even strokes.  So not only are the spirochetes better able to fight back against your Lyme meds when you have "thick blood", but they are even putting your life in danger!

I have a few questions for the members of our group: (1) How many of you have heard of hypercoagulation (in connection with Lyme disease) before?  (2) How many of you have been tested by your LLMDs or other doctors for hypercoagulation?  (3) If you were tested, did your doctors use the Hemex Labs tests (hereditary hypercoagulation and the ISAC panel)?

If you're interested, I've recently created my own Lyme disease blog and I wrote a post about this issue, here.  My LLMD has now put me on heparin injections (5000 units/1cc) twice a day, subcutaneously.

Ouch!

But I'd rather inject myself with heparin twice a day than have a stroke....wouldn't you?  :)

Inspiring words . . .

Here's a quote from Winston Churchill that can help us in our lyme journey:

If you're going through hell,

KEEP GOING.

Lyme disease on the increase in the US

from Digital Journal, posted Nov. 16, 2010 by Jane Fazackarley
The number of confirmed cases of the tick-borne illness Lyme disease is on the rise in the United States and around the world. An upsurge in the amount of cases have been reported in recent times. An expert on the disease discusses why there's a surge.

Statistics from the Centers for Disease control and Prevention show that there were approximately 30,000 confirmed cases of Lyme disease in 2009 and close to 40,000 probable cases.

Throughout 2010 there has been an increase in cases of the disease. Cases have been reported in Massachusetts and Virginia, Earlier this year the New Hampshire Department of Health and Human Services advised people to take precautions to protect themselves from Lyme disease and other tick-borne diseases.

What Pamela Weintraub told IOM panel

Pamela Weintraub's stirring speech at the Institute of Medicine's state-of-the-science Lyme workshop on October 11 brought a standing ovation from the audience, and spirited discussion from panelists. Weintraub is the author of the book Cure Unknown.

Here's an especially compelling paragraph:

It is hard enough to be sick—but to be so sick for so long and also be a suspect—to have your physical pain, your integrity, your very sanity called into question as you travel the medical landscape begging for help, well, let me tell you, that is a crushing course of events. In most other diseases, the sick person can focus on being a patient—on following through with treatment to try to get well. No one suggests the cancer patient is factitious, or the heart patient a sociopath. But in Lyme and tick-borne disease, the brutality of such rejection on top of real physical illness has traumatized the patient community writ large.

Researchers decode Lyme disease genome

Research into the genetic makeup of the microbe that causes Lyme disease offers hope for better diagnosis, treatment and possible prevention of the illness. Scientists have completed genetic blueprinting of 13 different strains of the bacteria. Article from CALDA website Oct. 9, 2010:

Researchers Dr. Steven E. Schutzer of UMDNJ-New Jersey Medical School and Dr. Claire M. Fraser-Liggett of the Institute for Genome Sciences, University of Maryland, and their collaborators have made a major achievement toward better understanding Lyme disease, by determining the complete genetic structures of 13 strains of the bacteria that cause the disease.

These new discoveries may accelerate research efforts to diagnose, prevent and treat the disease, which can affect the nervous system, heart, skin and joints. The occurrence of the disease has grown dramatically over the past ten years in the United States and Europe. The research, which was funded by the National Institutes of Health, has been published online ahead of print in the Journal of Bacteriology.

Dr. Schutzer said, “A driving force for doing this project was the observation that certain forms of the bacteria can be more invasive than others. We wanted to find out why and how to identify this property”.

Patients' views about Lyme in Congressional Record

This posting is from CALDA. The report entered into the congressional record in eight pages, but very important and good reading. I entered the link above and below here.

Patients' views about Lyme research entered into Congressional Record
NJ Congressman Chris Smith says bias stifles Lyme progress

A report exposing the gaps in research regarding Lyme disease, written by three Lyme advocacy groups, has been entered into the Congressional Record. .
Congressman Chris Smith of New Jersey told Congress that "biases and impediments" prevent scientific progress from being made in Lyme disease.
.
The report, entitled PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES, was prepared by the California Lyme Disease Association, the national Lyme Disease Association, and Time for Lyme, for the upcoming "state of the science" workshop on Lyme by the Institute of Medicine (IOM). However, the groups pulled out of the IOM process because of its high degree of bias.
Read more about the implications of these developments here.
.
Read the text of what was entered into the Congressional Record here.
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:
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Read background about the issues related to the IOM, in past postings of the Lyme Policy Wonk.


IOM modifies workshop agenda after patient groups pull out in protest; skepticism remains
After three patient groups dropped out of the upcoming IOM "state of the science" Lyme session, the IOM announced a change in the agenda. Now, Dr. Ben Luft of Stony Brook will offer a counterpoint to views of Dr. Gary Wormser (chief architect of the controversial IDSA Lyme guidelines). Click here to view the IOM's agenda.This appears to be some movement in the right direction. However, the protesting groups remain skeptical that the IOM process will lead to a true understanding of Lyme patients' needs. In a joint statement, they said, "It's one step--but we are cautious. The IOM needs to commit to making this entire process unbiased so that the true state of the science can be explored."

Dr. Liegner comments to Washington Post

Here are some excerpts from Dr. Liegner's comments to the Washington Post article (see previous post):

In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.

This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.

Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease in humans and animals.

The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.However, such guidelines are indeed useful. They serve to shield from liability physicians who neglect persons with chronic Lyme disease. By misusing CDC case surveillance criteria as the sole basis for a clinical diagnosis of Lyme disease, these guidelines serve the insurance industry very well indeed because such cases represent but the tip of the iceberg of actual cases of Lyme disease, whether acute or chronic.

Washington Post story on Lyme

An article about the misdiagnosis of Lyme disease is in Monday's Washington Post. It's a good read, and the comments from readers are even better.  Here's the link:
Washington Post article

IV antibiotic therapy Doctors in SLO county

I need to get IV therapy for my Lyme. Dr Thoring my Lyme specialist, has recommended I go to Dr Gonzales in Thousand Oaks for the order for the picc line to (hopefully) be put in here at Sierra Vista. Have any of you had a picc line IV therapy? Have any local doctors done/ordered it or am I stuck with Thousand Oaks or Palo Alto?
Thanks!
Karen

Nature's New Pain Relievers

Hi Everyone, Thought you might like to read this article about alternative pain relief. Notice that Qigong is one of the alternative treatments! Stay well. http://www.prevention.com/paincures/index.shtml

Interesting web page

Here's a fun way to look at coping with lyme. "25 reasons why being a lyme patient automatically makes you a badass." Click here.

Have you read the Spoon Theory?

It's difficult for other people to understand how ill we are, especially when we look healthy. Here is a link to an article written by a woman with lupus, but it applies to lyme as well. In it, she explains to a friend what it's really like to be so sick. How her stamina limits what she can do, and how she must choose what to do because she can't do everything healthy people take for granted. And she uses spoons to do it, giving her friend a handful of spoons to 'spend' as she goes through her day. If you haven't read it yet, it's worth a click to see it. Spoon theory article.

Doctors are the best and the worst

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.

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

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

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

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

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?

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

Would you like to be part of a Lyme Study?

This is FYI, NOT AN ENDORSEMENT!

While at my physician's office last week (Dr. Green), I picked up the following announcement of a Stanford University research project on Lyme. I asked Dr. Green, "Crap or not?" , to which she replied, "I hope not. I am planning to be one of the authors." My recollection (subject to Lyme dust in brain) is that Dr. Harris has already polled many of his patients regarding their symptoms and treatments. The data collected is to be part of this Lyme study, but you may also join the study. Here is a copy of what I picked up:

Immune Responses and Symptoms in Lyme Diesase Patients and Healthy Controls
Stanford University
Are you interested in participating in a research project at Stanford University researching Lyme Disease?

Sorry bout that!

I just tried a post through Word 2007 and my spacing went "flooie"! I hope you can "chase" those numbers down.

Debs

Deb’s IGeneX results positive: June 24, 2010

Hi Group,
Many of you expressed an interest in my test results when they came back. They have been at the doctor's office for a few days; the medical assistant finally gave me a call this morning along with a 10 page fax from IGeneX. Dr. Hirt is calling my case positive for Lyme; negative for co-infections.

IGeneX called yesterday and requested my authorization to run a 31 Epitope, so I "knew" yesterday that I had a positive test "lurking" out there. I was just waiting for confirmation…which for me, is really a positive thing. It beats the heck out of the MS diagnosis I received 7 years ago! (I was bitten by a deer tick on January 31, 1995 and I received 4 weeks of prophylactic Doxycycline; I did not have any follow up testing done.)

The following is a brief run down on my results. Labs drawn on June 8, 2010 @ IGeneX in Palo Alto:

Full-Wave Breathing---not an endorsement! FYI! June 26, 2010

This is NOT an endorsement! Just FYI.

Full-Wave Breathing with Andrew Utecht
The mechanics of Full-Wave Breathing are very simple, lead us back to the way we were born to breathe. This is an experiential class that will enhance any practice in which you are currently involved. Breathe in joy and discover all that is within.

If there were an easy, simple way to bring more you and health into your life, would you be interested in finding out what this might be? Would you be willing to invest time and effort in your "self" to find out? Take a deep breath, and ask your heart if this feels like a good thing.

Saturday, June 26, 1:00 pm
Fee is $50
At the home of Marcia Lee and Luccia Brillar
333 Mesquite Lane, Arroyo Grande
For directions, call Luccia at 489-8778
For more information, call Andrew at 715-281-8224

Volunteer is in place

Hello everyone!

Sheila Jeffries has committed to being our liaison...  Thank you..

Happy summer days...  Triza

CD-57 Test

Here's some interesting info I found online, explaining how this test works for lyme. Does this explanation seem accurate?
THE CD-57 TEST
Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur.

I've found my way!!!

Hi Group...and Ginny,

I've finally found my way to the blog! This is my very first blog post ever in fact. (No, I don't really need a pat on the back.)

Ginny...special thanks to you for your patience. A minute ago, after I had already written to you, I checked my spam folder and I found your invitation! I don't know why all of your other email has come through fine and that one email took a left turn!

I need to do some reading before I can begin to think about a post. I have so much to learn and absorb. Thanks to Marla, I have a lot more first hand information.

Take care,
Debs

Volunteer for support group liaison?

Hi everyone! 

I've been trying to get someone to volunteer as our support group liaison contact on the CALDA website for several months - thought I had a volunteer, but that faded away.  As you know, my name and email address is the point of contact for someone looking for help/support group contact.  

If you volunteer, your name and email address (phone number optional) will be listed for the Central Coast Lyme Disease Support Group.  The traffic goes in spurts.  You'll receive an email from a person who wants information.  You'll respond and most likely talk to them on the phone once.  You'll ask if they want to be on the email support group contact list and send out a mass email to the group welcoming the new individual with their name and email address.  Ginny will most likely follow up and invite them to our great blog too. 

Interested people call me on 534-9834 and will discuss particulars of the liaison job!

Thank you..  :o)

thanks for the blog!

Thanks Ginny for setting this up. It's nice to have a "private" place for all of us to communicate.

Western blot explanation

Dr. Crist Western Blot explanation

Posting this, written by Dr C of Missouri for the benefit of everyone. This was written around 1999 or 2000. There is an updated version below. Dr. Crist did a study of over 700 patients looking at these bands and symptoms.

Please note that "equivocal" is the same thing as "IND" or "indeterminate."
-------------------------------------------------

Explaining Borreliosis (Lyme) Western Blot Tests

The Western blot is a type of test that is conducted for detection of borreliosis (Lyme), but is also used to test for infections other than borreliosis.Borreliosis is a more accurate name than Lyme disease for this infection. Several different Borrelia may cause a similar clinical pattern in this disease. Old Lyme is a town in Connecticut, not a disease. Borreliosis is the name that should be used. There is no universal agreement on what defines a positive Western blot.

study finds Vitamin D supplements lack vitamin D

* Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

SAN ANTONIO -- Multiple sclerosis (MS) patients taking over-the-counter vitamin D aren't getting what they're paying for, or what their neurologists recommend, according to a study presented here.The mean vitamin D content from 10 OTC brands was only 33% of what the label claimed, with the actual content ranging from less than 1% to 82% of the advertised level.

The study was presented at the meeting of the Joint Consortium of Multiple Sclerosis Centers and America's Committee on Treatment and Research in Multiple Sclerosis.Vitamin D supplements are increasingly being recommended to MS patients, both for osteoporosis, which is common in the disease, and for presumed immunomodulatory actions as well, according to senior author Peter Calabresi, MD, of the Department of Neurology at Johns Hopkins University in Baltimore. "As the role of vitamin D in immune regulation in MS gains increasing focus, oral supplementation is growing," he said.

Rife Frequencies for Candida/Fungus/Inflammation

Hi there...

For those who use a Rife machine or are looking for additional ways to keep candida (yeast) and fungus at bay, here are some Rife frequencies that I've used for over 4 months with good results.  A light-colored or yellowish stool and a bit of diarreha are expected.  Begin at 3-4 minutes and slowly build up to 8 -10 minutes on each frequency, once a week.

450, 465, 1550

Top off the treatment with a  5 minute # 10K for Lymph nodes.

 be well and live in beauty -  Triza

Glad To Be Here

Hello Everyone!

I'm grateful and happy to be a part of the SLO Lyme Blog...  Triza

Detoxification Strategies

I am posting this here so people can refer to it as needed. Detox is so very important! I made some changes in the coffee enema section.

Detoxification Strategies
Be sure you have all 3 areas covered:
1. For Drainage – tissues get overloaded with toxins, keep pathways open:

Nutramedix – Burbur, Parsley
Transformation Products – K-Drain, L-Drain
Heel – Lymphomyosot
(all available at http://www.renewalenterprises.com/)

Pekana Detox Kit by BioResources, Inc. (Apo Hepat, Renelix Itires)

2. Detox Pathways: skin, liver, lymphatic system

Detox skin: Sauna (far infrared considered best by some), Epsom salt bath, Yucca Root (detoxs ammonia)

Detox liver & colon: sarsaparilla, artichoke, Alpha Lipoic Acid, Glutathione, N-A-C, Argilietz clay, wobenzym, castor oil packs, colonics, coffee enemas, and others

Lymphatic system – lymphatic massage, dry brushing, Qigong
Brain Detox – Nutramedix Pinella

3. Binders (to pull toxins out) – chlorella, zeolite, cholestryramine, activated charcoal, apple pectin, nanotech chitosan, psyllim, & others.
(King Chlorella available at http://www.iherbs.com/)

Local Colonic resource – Terrye Baker at Internal Wellness Center in Atascadero (462-2863)

By Marla Lipshin


The Coffee Retention Enema

Start by doing a quick plain water enema to rinse out the colon (distilled water is best). Make 2 cups of organic coffee (drip filter is easiest), using distilled water.

Place the cooled coffee in an enema bag. Lubricate tip with non-petroleum based lubricant (i.e. KY jelly, Vit. E, Aloe Vera).

The best position to assume when receiving the enema is “head down and rear up.” After the liquid has been inserted, roll onto your right side and hold the solution in your body for fifteen minutes before allowing the fluid to be expelled. Do not roll from side to side.

Do not be concerned if the liquid is not expelled after fifteen minutes. Simply stand up and move around as usual until you feel the urge to expel the liquid.

The coffee stimulates a nerve in your colon that runs to the liver, thereby detoxing the liver. This is why it is helpful even for people with loose bowels.

Lyme Article, accuracy and ticks in SLO County

Here is the link to article I wrote in The Tribune last week
http://www.sanluisobispo.com/2010/05/25/1154012/viewpoint-tick-season-is-here.html

My statistic "A recent study found one in four ticks in Poly Canyon to be carrying the Lyme bacteria" was based on something I heard at the last support group meeting. Even as I was sending the article in, I made a note to myself to get a copy of the study. The day the article came out I was questioned about the study by a guy who turned out to be a science writer for the Smithsonian magazine and the epidemiologist at Public Health. When I found the study I realized that I had misquoted it in three different ways! The study was done in 2004 on rodents in Poly canyon and four other central coast locations and found 1 in 4 rodents to be carrying the bacteria Borrellia bissettii, not B. burgdorferi. The author of the study says that the question of whether or not B. bissettii is responsible for the transmission of disease in humans is unanswered at this point.

Original study link: http://www.bioone.org/doi/abs/10.1603/0022-2585-41.4.736?journalCode=ment

I want to underscore the need to follow up on anything you hear at a support group meeting or anywhere else before you pass this info on, particularly for any sort of publication. There is so much misinformation on LD that it is incumbent on those of us trying to educate people to be very accurate with our facts.

Sheila helped me with some excellent research and was able to find an interview last month with a medical epidemiologist, Dr. Robert Lane, who along with other researchers, has been attempting to determine if B. bissetti sporadically infects people in California. They suspect it does for the reasons he mentions in his interview here : www.lymeneteurope.org/forum/viewtopic.php?f=5&t=2953.

Anyway, I wrote a correction to the paper, not sure if they will publish it yet. It was a good lesson and actually ended up educating Sheila and I about B. bissettii. We need to keep an eye on this research, because of its huge implications for LD on the central coast.

Be sure to check your facts!
Marla

excellent medical references for chronic lyme

I know this is a long post (10 pages). It was written by Dr. Volkman, a highly respected member of the medical community. This is the best, systematic scientific explanation for why "lyme is hard to catch, easy to treat" is so, so wrong. He list numerous studies to support his evidence. So, if you are interested in the science, or need something to send to insurance, or if you think a MD is open to reading and learning, this is excellent.

Getting low cost or free medicine

Go to Bridges to Access for free Mepron, Augmentin, Ceftin. Go through the list of their medicines. You must not have insurance, and you have to meet eligibility requirements, you can read about that on the website.

http://www.bridgestoaccess.com/about/program_description.html

The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies
https://www.pparx.org/Intro.php

There is also
http://www.myfreemedicine.com/

and

www.needymeds.org

http://www.prescriptionhope.com/

Viewpoint: Tick season is here –- be vigilant

Note: Here is the Viewpoint article written by Marla. I want it to be on file in our blog.

by Marla Lipshin
Most people are aware that Lyme disease is transmitted by the bite of a tick, but many people are unaware of the possible seriousness of this disease and the importance of prevention.

Check out today's Tribune, page B-5, to see Marla's Viewpoint article on lyme disease: Tick season is here – be vigilant. Great work Marla! The Trib even added a graphic of a tick, and gave the article good placement on the page.

Green tea extract (EGCG) effective agasint Babesea

I thought I'd post this here, for the record.

Parasitology. 2010 Apr;137(5):785-91. Epub 2009 Dec 22.
Inhibitory effects of (-)-epigallocatechin-3-gallate from green tea on the growth of Babesia parasites.
Aboulaila M, Yokoyama N, Igarashi I.
National Research Center for Protozoan Diseases, Obihiro University of Agriculture and Veterinary Medicine, Inada-Cho, Obihiro, Hokkaido 080-8555, Japan.
Abstract
(-)-Epigallocatechin-3-gallate (EGCG) is the major tea catechin and accounts for 50-80% of the total catechin in green tea. (-)-Epigallocatechin-3-gallate has antioxidant, anti-inflammatory, anti-microbial, anti-cancer, and anti-trypanocidal activities. This report describes the inhibitory effect of (-)-Epigallocatechin-3-gallate on the in vitro growth of bovine Babesia parasites and the in vivo growth of the mouse-adapted rodent babesia B. microti. The in vitro growth of the Babesia species was significantly (P<0.05) inhibited in the presence of micromolar concentrations of EGCG (IC50 values=18 and 25 microM for B. bovis, and B. bigemina, respectively). The parasites showed no re-growth at 25 microM for B. bovis and B. bigemina in the subsequent viability test. The drug significantly (P<0.05) inhibited the growth of B. microti at doses of 5 and 10 mg/kg body weight, and the parasites completely cleared on day 14 and 16 post-inoculation in the 5 and 10 mg/kg treated groups, respectively. These findings highlight the potentiality of (-)-Epigallocatechin-3-gallate as a chemotherapeutic drug for the treatment of babesiosis.
PMID: 20025823 [PubMed - in process]

Hi, I'm "on"

Hi Slo lymies, I managed to log on. Thanks Ginny for setting this up

Welcome new "authors"

Today, we've sent out invitations to lyme group members to join our blog. Here's an early Welcome to our new authors. I'm looking forward to communicating with you!

My daughter Kate is walking after two years!

Exciting news! Kate has been wheelchair bound and bedridden for two years. Yesterday she started walking again! I knew it was coming soon, but didn't expect it this soon. She looks like a colt stumbling around. It all happened so fast. We are very excited!

First Try

Thanks so much for setting this up, Ginny. I think it will be a great resource for us.

Hi Ginny
This is just a test to see if it goes through. I hope that you're doing well. Sorry for not getting back to your earlier.

Ray

Hello

Here's a blog that we can use to communicate about lyme disease, treatments we're using or want to ask others about, and as a way to keep in touch with each other. Because lyme can limit our opportunities to reach out physically, this blog may be a way to keep us connected. What do you think?