KANSAINVÄLISEN BORRELIOOSIJÄRJESTÖN KOKOUKSESTA

Valvojat: Jatta1001, Borrelioosiyhdistys, Bb

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Bb
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Liittynyt: Ma Tammi 26, 2009 23:13

KANSAINVÄLISEN BORRELIOOSIJÄRJESTÖN KOKOUKSESTA

Viesti Kirjoittaja Bb » Ke Helmi 11, 2009 23:40

Lähettäjä: Soijuv Lähetetty: 7.11.2004 9:27

Raportti ILADS:in kongressista 23.10.2004:

Borrelioosi on aliraportoitu:



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 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, exhibiting a required symptom, were CDC reportable cases. What's more, of the 1,000 or so Lyme patients that Dr. Jemsek have treated, only 3 or 4 have had all 5 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 18 kDa.

Englannista löytyy vain kolme borrelioosiin erikoistunutta lääkäriä! Kyselyssä vain kolmasosa lääkäreistä tiesi miltä punkki näyttää ja suurin osa ei ollut koskaan kuullutkaan borrelioosin aiheuttamasta tyypillisestä ihomuutoksesta! Mielenkiintoista olisi tietää minkälainen tulos Suomesta saataisiin jos vastaava kysely tehtäisiin suomalaisilla lääkäreillä!


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 an informal poll of his patients, only a third know what a tick looks like. Most had never heard of the classic EM bullseye rash. He theorized that there might be a link between Gulf War Syndrome and Lyme (from biting sand fleas).

Conclusions: Don't get bitten by a Lyme-infected tick in the UK.


Phillips esitteli 23 tutkimuksen tulokset, joissa borrelioosin todettiin kroonistuvan, jatkuvien oireiden taustalla ei ole autoimmuunireaktio (ainakaan yksinomaan) ja että borreliabakteeri kykenee selviytymään antibioottihoidoista huolimatta. Hänen mielestään borreliabakteeri saattaa hyvinkin olla esim MS-taudin oireiden syynä:



Steven Phillips, MD, on 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.

Sveitsiläinen lääkäri Meer-Scherrer esitti potilasaineistoaan, jossa kliinisesti todetuissa borrelioositapauksissa 42 % oli seronegatiivisia, 30 % ELISA (vasta-aineet) oli positiivisia jne:


Dr. Meer-Scherrer (Sveitsi) on her Lyme Patient Database

Dr. Meer-Scherrer analyzed Lyme patient data from the "Cameron Surveillance Database."
http://www.lymeproject.com/Cameron/Rese ... tabase.htm


Her 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

JATKUU...
Viimeksi muokannut Bb, Ma Maalis 09, 2009 19:15. Yhteensä muokattu 1 kertaa.

Bb
Viestit: 1816
Liittynyt: Ma Tammi 26, 2009 23:13

Viesti Kirjoittaja Bb » Ke Helmi 11, 2009 23:46

Lähettäjä: Soijuv Lähetetty: 19.11.2004 15:15

...JATKUU

D. Cameron esitti kongressissa tutkimuksen jossa 107 kroonista borrelioosia sairastavaa henkilöä (sairausaika keskimäärin 4,7 v.). Potilaiden sairauden diagnosointi viivästyi potilaista johtuvista syistä keskimäärin 6 kk ja lääkäreistä johtuvista syistä 2,2 vuotta! Lääkärit diagnosoivat borrelioosin virheellisesti esim selluliitiksi!!, hämähäkin puremaksi, poskiontelotulehdukseksi, vettä polvessa, migreeniksi, fibromyalgiaksi jne.


Dr. Daniel Cameron: Analysis of Lyme Patient Database http://www.lymeproject.com/Cameron/Rese ... tabase.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.

R. Stricker: Kroonisessa borrelioosissa on ongelmana tietää milloin on oikea aika lopettaa antibioottihoito. CD57 tappajasolujen määrää seuraamalla asiaan saatetaan saada selvyyttä. Kroonista borrelioosia sairastavat joilla on CD57 on alhainen, ovat alttiimpia erilaisia lisäinfektioille, immunologisille häiriöile, neurologisille oireille jne.


Dr. Raphael Stricker, MD: Using the CD57 Natural Killer Cell Marker to Measure Treatment Progress
http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract


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.)
http://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 http://www.mentalhealthandillness.com/lymeframes.html
HTTP: www.actionlyme.com
HTTP: www.mentalhealthandillness.com http://www.actionlyme.com


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.

Fallonin tutkimuksessa todistettiin pitkien suonensisäisten ab-hoitojen olleen tehokkaita:



Dr. Brian Fallon: IV Antibiotics Help People with Chronic Lyme Disease
Report from the NIH-funded Columbia Study of Chronic Neurologic Lyme
Disease http://www.lymediseaseassociation.org/Fallon_Study.pdf
<HTTP: 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.

---

Englantilainen lääkäri kertoi, että 75 % hänen potilaistaan oli saanut borrelioosin armeijassa ollessaan:


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
http://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 and 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.


Assorted Comments from Physicians in the Audience

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.

** Actigall + Rocephalin estävät yhdessä käytettynä sappikivien muodostumisen : 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.

** 3 lääkäriä on huomannut borrelioosia sairastavilla epätavallisen runsaasti sekä hyvän että pahanlaatuisia kasvaimia!!

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.

** Borrelioosin hoidossa on tehokkainta käyttää antibiootteja jotka vaikuttavat sekä solun ulkoisiin että sisäisiin bakteereihin:

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.


Sherwood Casjens, PhD: Bb Exchanges Genetic Material http://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.

Lasten kroonisen borrelioosin (2 - 19v) hoidossa Donta on käyttänyt tetrasykliinejä tai makrolidejä yhdessä hydroksiklorokiinin kanssa. Hoitoaika 4 - 8kk. 75 % parantunut tai tullut paremmaksi.


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%

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