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“KrisKraft” on LymeNet Flash provided these wonderfully thorough
conference notes. To see other people's comments on these notes, or to
respond with your own comments, see:
http://flash.lymenet.org/ubb/Forum1/HTML/029236.html
"Here's my complete report on the ILADS Lyme Conference."
ILADS Conference Report 10/23/04
Almost 300 healthcare professionals from around the country attended the ILADS Conference, which was held in Westchester County, New York, one of the country's most Lyme-endemic areas. ILADS (International Lyme and Associated Diseases) is a nonprofit, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases.
These are my personal notes from the conference.
Joseph Jemsek, MD, on EM Rashes
http://www.jemsekclinic.com/lymedisease.php
His clinic conducted a study of 48 PCR-positive Lyme patients, and found that only 21% exhibited the classic EM Bullseye rash. Out of all these Lyme patients, only 21% were IgM positive and 10% were IgG positive, according to the CDC criteria. Only 4% of the seropositive patients who displayed a required symptom were CDC-reportable cases. What's more, of the 1,000 or so Lyme patients that Dr. Jemsek has treated, only 3 or 4 have had all 5 IgG Western Blot bands required by the CDC.
Conclusions: The CDC guidelines result in a gross underreporting of true Lyme cases, as well as the misdiagnosis of many Lyme sufferers. More reliable testing is needed, and the CDC needs to lower the number of Western Blot bands required, also adding the Bb-specific bands of 31 kDa, 34 kDa, and 18kDa.
Steven Phillips: MD, Persistent Lyme Infections
In this breakneck presentation, Phillips presented an overview of 23 research studies that support the theory that Lyme bacteria are complex, resilient organisms that can survive multiple onslaughts of antibiotics. His citations dispute the widely held belief (supported by Klempner, et al) that Chronic Lyme doesn't exist and that lingering symptoms are a result of an autoimmune response.
He discussed the ability of Bb bacteria to alter its surface proteins to hide from the immune system and to change to cell wall deficient forms (i.e., cysts, spheroblasts, and L-forms), which aren't affected by traditional antibiotics. Bb can hide inside cells such as the macrophages (the white blood cells that are supposed to mop up dead bacteria), and they can congregate in little balls, called blebs, where the outer spirochetes protect the inner spirochetes from antibiotics.
He mentioned that blood thinners appear to disrupt the formation of spheroblasts in the bloodstream, and that could explain the improvement that some patients experience using Heparin.
He posed one thought-provoking question on Lyme transmission; if 88% of ticks that fed on the blood of Lyme-infected mice picked up the infection, then why is it so hard for us to pick up evidence of infection in human blood? Are we testing for the wrong thing?
Dr. Phillips also thinks there is compelling evidence that Bb could be the root cause of many MS symptoms. Both diseases result in the demyelination of nerves and the Bb flagella are made up of the same protein as the myelin sheath around our nerves.
Dr. Daniel Cameron: Analysis of Lyme Patient Database
www.lymeproject.com/Cameron/Research/Surveillance_Database.htm
Dr Cameron discussed his "Cameron Surveillance Database."
His analysis of clinically diagnosed Lyme patients found that:
42% were seronegative
30% had a positive ELISA
17% exhibited an EM rash
7% tested positive on the IgM Western Blot
4% tested positive on the IgG Western Blot
A recently completed NIH study of 107 chronic Lyme patients (sick for an average of 4.7 years) found that they had a quality of life worse than diabetics and recent heart attack patients. The average delays for treatment of Lyme disease were 6 months due to delays by the patients and 2.2 years due to delays caused by physicians, who often misdiagnosed Lyme as spider bites, torn cartilage, cellulitis, water on the knee, sinusitis, fibromyalgia, migraines, and Epstein Barr. Given that patients with delayed treatment have a much higher rate of treatment failures (52% vs. 15%), he suggested that the medical community emphasize the importance of following the ILADS treatment guidelines in order to prevent regular Lyme from becoming Chronic Lyme.
Dr. R. Stricker: Using the CD57 Natural Killer Cell Marker to Measure Treatment Progress
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd==Retrieve&db==PubMed&list_uids=.088407&dopt=«stract
One of the difficult things about treating chronic Lyme patients is figuring out when to stop antibiotics, since the antibody and PCR tests are so unreliable. Dr. Stricker has been doing research that measures the CD57 Natural Killer (NK) Cell levels as a way of determining if a chronic lyme patient is getting better. (The CD57 Natural Killer Cell is an aggressive white blood cell or "lymphocyte" that seeks out invading germs and destroys them.) It appears that Bb and all the coinfections somehow disable the production of the CD57 natural killer cells. (The "Stricker Panel," which is ordered by many Lyme Literate Physicians measures this immune system marker, among others.)
www.anapsid.org/lyme/strickerpanel.html
In his study of 89 chronic Lyme patients over a year, he found that patients with chronic Lyme disease and very low CD57 NK levels have significantly more coinfections, delayed diagnosis, more neurologic disease and persistent immunologic defects, compared to patients with higher CD57 NK levels.
He talked about how the Bb organism has more than 1,500 genes, 132 of which are functioning genes, making it about six times more complex than the Syphilis spirochete. Bb evades the immune system with mutations, physical seclusion, and secreted factors. Scientists have just discovered the first toxic secretion by Bb, Porin (OMS28), which it probably uses to punch holes in cell membranes. http://iai.asm.org/cgi/content/abstract/72/11/6279
Robert Bransfield, MD: Neuropsychiatric Management of Lyme
www.mentalhealthandillness.com/lymeframes.html
www.actionlyme.com/Bransfield_Fatigue_6_03.htm
Dr. Bransfield discussed strategies for addressing fatigue in Lyme patients. He believes that by normalizing a patient's sleep patterns, the patient's immune system is better able to fight Lyme disease and other infections. He typically has a patient take Modafinil in the day to increase brain histamine activity, thereby reducing daytime fatigue. He gives them Tigabine at night to increase restorative slow-wave sleep and improve neuropathy. He prescribes Memantine, a low to moderate NMDA receptor antagonist, to block the toxic effects of quinolinic acid, which theoretically slows the progression of encephalopathy.
Dr. Brian Fallon: IV Antibiotics Help People with Chronic Lyme Disease
Report from the NIH-funded Columbia Study of Chronic Neurologic Lyme
Disease
www.lymediseaseassociation.org/Fallon_Study.pdf
In the talk I attended, Dr. Fallon discussed the rigorous methodology that he used to choose participants for this NIH Chronic Lyme study, and how he eliminated subjects who were susceptible to "the placebo effect." Below is an edited down version of his press release, which discusses this study's findings:
Patients with chronic Lyme disease retreated with 10 weeks of intravenous antibiotics showed significant improvement in cognition and other symptoms, said Columbia University neuropsychiatrist Brian Fallon, MD, principal investigator for a $4.7 million study funded by the National Institutes of Health. Fallon presented the results for the first time at the October 22 conference jointly sponsored by the national New Jersey based Lyme Disease Association (LDA) in conjunction with Columbia University.
To be eligible for the study, patients had to have chronic Lyme disease with ongoing memory impairment. All had previously been treated with at least 3 weeks of IV antibiotics and relapsed. All patients in the study were tested with cutting-edge brain-imaging techniques, and significant improvement in neurocognitive function was seen over the 10-week IV antibiotic retreatment period.
"This is the first randomized controlled trial of chronic neurologic Lyme disease; the results support the benefit of a repeated course of longer-term intravenous antibiotic therapy for patients with a return of cognitive problems," said Fallon.
David Owen, MD: Lyme Disease Awareness in the UK
In the entire UK, there are only 3 MDs who list Lyme as a specialty. In a survey of 100 primary care patients, only a third even knew what a tick looks like, and even fewer had ever heard of a bullseye rash. 75% of his Lyme patients got their tick bites during military training, and he theorized that there might be a link between Gulf War Syndrome and Lyme (from biting sand fleas).
Nick Harris, PhD, IGeneX CEO: Lyme Testing
www.igenex.com/about.htm
In his talk, Harris discussed his lab's credentials, and how hard it is to get certified as a commercial lab serving New York state and California. Unlike many labs, IGeneX uses two strains of the Lyme bacteria (B31 and 297), so it's more likely to detect strains from the Midwestern US and Europe. It also tests for the late Lyme markers of 31kDa and 34kDa, which take 6 months to develop, and aren't always included in other labs's Western Blot tests.
He presented a physician's testing strategy for patients who are suspected of having chronic Lyme disease.
His definition of a positive Lyme diagnosis:
A positive whole blood PCR test (detects Bb DNA)
or
A positive IgG or IgM Western Blot (especially if the 31 or 34 kDA bands are positive.)
If these criteria aren't met, and the physician still wants to confirm a clinical diagnosis with a positive test, he suggests an antibiotic challenge to increase the amount of free-floating Bb in the system, then running a Lyme Dot Blot test and a 3-sample pooled urine PCR test.
Important note: IGeneX has found that blood samples yield more positives when taken in the late afternoon, the time when most Lyme patients experience their intense bouts of fatigue.
I didn't watch the following presentations, but I summarized their abstracts for you reading enjoyment :
Sherwood Casjens, PhD: Bb Exchanges Genetic Material
www.pnas.org/cgi/content/abstract/101/39/14150
Sherwood Casjens, PhD, University of Utah School of Medicine, and a renowned genome team including Claire Fraser, PhD, President, The Institute of Genomic Research (TIGR), presented new information that Borrelia burgdorferi, the spiral-shaped bacteria that cause Lyme disease, are able to freely exchange genetic material among themselves, potentially making diagnosis and treatment difficult. The team of researchers concluded that frequent recombination may help the bacteria survive in ticks and in the animals they feed on, including humans. The research was published in the Sept. 28 issue of The Proceedings of the National Academy of Sciences.
Sam Donta, MD: Lyme in the Pediatric Population
Dr. Donta compiled clinical statistics on 101 children with Chronic Lyme Disease, aged 2-19, with multiple persisting symptoms (88% greater than 6 months). The prevalent symptoms included:
Symptoms
Musculoskeletal - 90%
Fatigue - 84%
Cognitive dysfunction - 74%
Paresthesias (numbness, tingling) - 46%
Stomach pains or nausea - 48%
Eye symptoms - 40%
Fevers or sweats - 39%
Bell's Palsy - 5%
Other: Dizziness, palpitations, tremors 79%
Noticed a tick bite - 24%
Noticed a rash - 40% (only 15% typical EM rash)
Test results
Positive EIA (antibodies) - 65%
IgG, at least one positive band - 82%
IgM, at least one positive band - 74%
Brain SPECT Scan - Abnormal in 18 of 29 scans
Treatment
4-8 months on tetracycline or a macrolide/hydroxychorolquine combo:
Cure or sustained clinical improvement: 75%
Here's an assortment of interesting information picked up during the question-and-answer periods. I didn't catch the names of all the speakers, so it's hard to verify how credible the comments are.
** Stricker or Burrascano said he hasn't had any patient gallbladder losses on IV Rocephin, as long as Actigall is given simultaneously.
** One doc has had good results with Probenecid and IM Bicillin shots. Probenecid prevents gout attacks by removing extra uric acid from the body, and it slows the body's removal of antibiotics, thus increasing their levels in the blood and prolonging their duration of action.
** Burrascano doesn't have much faith in the efficacy of Samento, mushrooms (Reishi?), and TH-1 cytokine boosters.
** The half life of Bb IgM in the blood is a month, so repeat testing can show progress.
** It's rare, but chronic Ehrlichia does exist, based on publications in the Veterinarian realm.
** According to Burrascano, the jury is still out on the effectiveness of Ketek, because of GI tract fungal overgrowth issues.
** Three different physicians mentioned that they had noticed a high incidence of both benign and malignant tumors on Lyme patients. Many were located near the tick bite site.
** Because of Lyme's ability to morph and hide within cells, such as macrophages, treatment is more effective if both an intracellular and extracellular antibiotic is administered simultaneously.
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