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October 26, 2009

The Westmorland Gazette - Dad battles deadly tick bite illness after Lake District trip

By Matthew Taylor: 10:20am Monday 26th October 2009
BLOOD-SUCKING: Kevin Slater, pictured with his two sons, was bitten by a tick. A FATHER-of-two is seriously ill with the potentially life-threatening Lyme Disease after being bitten by a blood-sucking parasite while in the Lake District.

Father of two, Kevin Slater, 48, was walking in Grisedale Valley, Patterdale, when he was bitten by a tick.

A tick is an arachnid that cuts through flesh with barbed teeth before inserting a needle-like feeding tube.

The disease has now developed into encephalitis – inflammation of the brain that can cause brain damage, blindness and even death.

Now, after receiving conflicting medical advice, Mr Slater is calling for a greater recognition of Lyme Disease among the UK medical profession, and that landowners erect warning signs in places known to house ticks carrying Lyme Disease.

Mr Slater noticed the parasite clinging to his calf while in the shower the day after the walk in August.

“It looked like a blood clot. I brushed it and it fell off.

“I picked it up and could see it had small legs. It was fully engorged – very round and filled with blood,” he said.

Aware not all ticks carry Lyme Disease, Mr Slater carried on as normal.

“Three days later I began to feel very odd. The first feeling was like motion sickness; light headed and giddy. Then there was a feeling of nausea,” he said.

Mr Slater, a self-employed engineering consultant from York, was in Germany and rang NHS Direct.

Back in the UK, he visited various doctors, becoming frustrated with their advice, which he felt was contradictory.

NHS director of public health for the North West, Professor John Ashton, said the UK was behind America in recognising Lyme Disease, but steps were now being taken to make people more aware of the dangers.

Mr Slater has been unable to work for eight weeks and is currently receiving antibiotic treatment from his specialist in Newcastle.

http://www.thewestmorlandgazette.co.uk/news/4701533.Dad_battles_deadly_tick_bite_illness_after_Lake_District_trip/

June 6, 2009

State of Connecticut - An Act Concerning The Use Of Long-Term Antibiotics For The Treatment Of Lyme Disease.

Substitute House Bill No. 6200 - Public Act No. 09-128

Be it enacted by the Senate and House of Representatives in General Assembly convened:

Section 1. (NEW) (Effective July 1, 2009) (a) As used in this section, (1) “long-term antibiotic therapy” means the administration of oral, intramuscular or intravenous antibiotics, singly or in combination, for periods of time in excess of four weeks; and (2) “Lyme disease” means the clinical diagnosis by a physician, licensed in accordance with chapter 370 of the general statutes, of the presence in a patient of signs or symptoms compatible with acute infection with borrelia burgdorferi; or with late stage or persistent or chronic infection with borrelia burgdorferi, or with complications related to such an infection; or such other strains of borrelia that, on and after July 1, 2009, are recognized by the National Centers for Disease Control and Prevention as a cause of Lyme disease. Lyme disease includes an infection that meets the surveillance criteria set forth by the National Centers for Disease Control and Prevention, and other acute and chronic manifestations of such an infection as determined by a physician, licensed in accordance with the provisions of chapter 370 of the general statutes, pursuant to a clinical diagnosis that is based on knowledge obtained through medical history and physical examination alone, or in conjunction with testing that provides supportive data for such clinical diagnosis.

(b) On and after July 1, 2009, a licensed physician may prescribe, administer or dispense long-term antibiotic therapy to a patient for a therapeutic purpose that eliminates such infection or controls a patient’s symptoms upon making a clinical diagnosis that such patient has Lyme disease or displays symptoms consistent with a clinical diagnosis of Lyme disease, provided such clinical diagnosis and treatment are documented in the patient’s medical record by such licensed physician. Notwithstanding the provisions of sections 20-8a and 20-13e of the general statutes, on and after said date, the Department of Public Health shall not initiate a disciplinary action against a licensed physician and such physician shall not be subject to disciplinary action by the Connecticut Medical Examining Board solely for prescribing, administering or dispensing long-term antibiotic therapy to a patient clinically diagnosed with Lyme disease, provided such clinical diagnosis and treatment has been documented in the patient’s medical record by such licensed physician.

(c) Nothing in this section shall prevent the Connecticut Medical Examining Board from taking disciplinary action for other reasons against a licensed physician, pursuant to section 19a-17 of the general statutes, or from entering into a consent order with such physician pursuant to subsection (c) of section 4-177 of the general statutes. Subject to the limitation set forth in subsection (b) of this section, for purposes of this section, the Connecticut Medical Examining Board may take disciplinary action against a licensed physician if there is any violation of the provisions of section 20-13c of the general statutes.

http://www.cga.ct.gov/2009/ACT/PA/2009PA-00128-R00HB-06200-PA.htm

March 5, 2009

Tri-Town Nesws - Smith legislation calls for more efforts against Lyme

Congressman Chris Smith (R-NJ) has announced the introduction of a bill to combat Lyme disease, and thanked original co-sponsors Congressmen Bart Stupak (D-Michigan), Frank Wolf (R-Virginia) and Tim Holden (D-Pennsylvania).

According to a press release, Smith is the sponsor of the “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009.”

The measure, H.R. 1179, would expand federal efforts concerning the prevention, education, treatment and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

Smith, Stupak, Wolf and Holden are cochairs of the House Lyme Disease Caucus.

H.R. 1179 authorizes what Smith said is a much-needed increase in total research and education of $100 million over five years. The bill also contains measures to ensure that resources are expended effectively to provide the most benefit to people with Lyme and other tick-borne diseases.
It also seeks improved surveillance and prevention and clinical outcomes research to determine the long-term course of the illness and effectiveness of different treatments. The Tick-Borne Diseases Advisory Committee would ensure coordination and communication among many federal agencies, a broad range of medical professionals, and patients, according to the press release.

“Lyme is one of the most prevalent diseases in the U.S. today,” said Smith. “About 220,000 Americans develop Lyme disease each year, and we suspect that number is a conservative estimate. This bill provides a comprehensive national effort to step up the fight against this ever-growing threat. My state of New Jersey is particularly hard hit.”

While Lyme accounts for 90 percent of tick-borne diseases in the U.S., the same tick species spreads other diseases, such as anaplasmosis and babesiosis. Other tick species spread diseases, such as Rocky Mountain spotted fever and southern tick-associated illness.

More than 30 affiliate organizations of the Lyme Disease Association Inc., headquartered in Jackson, in Smith’s district, support the measure.

According to the press release, Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system. Advanced symptoms include arthritis of weight-bearing joints, neurological and cardiac problems, encephalopathy and memory problems. The Centers for Disease Control and Prevention has determined that from 1992 to 2006, the incidence of Lyme disease was highest among children ages 5 to 14.

http://tritown.gmnews.com/news/2009/0305/front_page/019.html

February 18, 2009

Bill Allowing MDs Treating Lyme to Consider Long-Term Antibiotic Therapy Now Before the Connecticut General Assembly

February 17, 2009

“The Lyme community really rallied behind this Bill. We were overwhelmed by the support and intense passion so many residents brought to the discussion.” – CT Rep. Kim Fawcett

Representative Kim Fawcett (D-Fairfield, Westport) has introduced a bill in the Connecticut General Assembly (House Bill 5625, An Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease) that will extend protections to doctors needed to allow them to freely diagnose and treat patients with Lyme disease.

The bill will allow doctors treating Lyme disease patients to diagnose the disease clinically and consider all treatment options, including long-term antibiotic therapy.

“After experiencing first hand last summer, through my husband’s illness, the devastating health consequences and frustrations related to seeking treatment for Lyme Disease, I started reaching out to activists and fellow legislators to determine what the state could do to help,” Rep. Fawcett said.

“Patients and their families often suffer unnecessarily because treatment options are controversial and doctor’s opinions are diverse. This Bill aims to establish rights and protections to all doctors who diagnose and treat patients with Lyme Disease.”

Representative Fawcett’s efforts to build momentum for the proposal have already earned the bill 12 co-introducers from around the region.

All of Fairfield’s legislative delegation is supporting the legislation, including Republican Minority Leader Sen. John McKinney (R-Easton, Fairfield, Newtown and Weston) and Rep. Tom Drew (D-Fairfield). Other legislators supporting the legislation include Rep. Chris Lyddy, Rep. Peggy Reeves and Rep. Tony Hwang and representatives from Danbury, Westport, Norwalk, Ridgefield, and Stamford.

“At a time when the legislature faces tough financial deficits and cuts in spending statewide, legislators can still support legislation that does not cost the state tax payers but improves quality of life. The Lyme Bill is a proactive way to make Connecticut a better place to live without adding to the financial burdens of our residents,” Rep. Fawcett said.

“The bill changes public health policy and clarifies a doctor’s right to diagnose and treat this disease; it does not cost the state any money or create any type of new program,” Rep. Fawcett added.

A public hearing before the Public Health Committee was held Friday, Feb 6. “The Lyme community really rallied behind this Bill, we were overwhelmed by the support and intense passion so many residents brought to the discussion.” Fawcett said.

• More the 100 people submitted written testimony on behalf of the Bill sharing their personal stories and struggles in fighting the disease and in achieving a diagnosis and proper treatment.

• The State Medical Society and the Lyme Disease Association of America also sent representatives to testify on behalf of the Bill.

The Bill will face a committee vote in the Public Health Committee and in the coming weeks make its way to the House Floor for consideration. Concerned citizens are encouraged to call their State Representatives and State Senators to urge passage.

Source: CT State Rep. Kim Fawcett press release, Feb 9, 2009

http://www.prohealth.com/library/showarticle.cfm?libid=14325

November 1, 2008

Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial.

Minerva Med. 2008 Oct;99(5):489- 96.

Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial.

Cameron D.

Northern Westchester Hospital, Mount Kisco, NY, USA cameron@lymeproject .com.

Lyme disease is a global health concern and is the world’s leading tick borne infection caused by the spirochete, Borrelia burgdorferi, that has been associated with numerous neurologic, rheumatologic and psychiatric manifestations. The symptoms of Lyme disease have been characterized as either severe or ”related to the aches and pains of daily living.” A randomized double-blind, placebo-controlled clinical trial (RCT) was conducted in a primary internal medicine practice in Westchester County, New York, USA. A total of 84 adults with Lyme disease with persistent symptoms (LDPS) were studied; 52 received amoxicillin and 34 received placebo. The subjects received either placebo or amoxicillin 3 g per day orally for 3 months. The SF-36 was used as the outcome measure of the patient’s perceived Quality of Life (QOL). For subjects enrolling in this RCT, the average SF-36 physical component summary (PCS) of QOL (40+/-9, range 29-44) and mental component summary (MCS) of QOL (39+/-14, range 23-46) were worse than the general USA population and worse than individuals with diabetes, heart disease, depression, osteoarthritis or rheumatoid arthritis. The improvements in the SF-36 measure of QOL for subjects randomized to amoxicillin vs. placebo was significant (46% vs 18%, P=0.007). It is important for clinicians to be aware that LDPS can be severe. A significant gain in the QOL for subjects randomized to amoxicillin in this RCT without serious adverse events is consistent with the goal of improving atient’s QOL and consequently worthy of further study.

PMID: 18971914 [PubMed - in process]

October 24, 2008

Persistence of Borrelia burgdorferi following Antibiotic Treatment in Mice

Emir Hodzic, Sunlian Feng, Kevin Holden, Kimberly J. Freet, and Stephen W. Barthold* Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis, One Shields Avenue, Davis, California 95616*Corresponding author. Mailing address: Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis, One Shields Avenue, Davis, CA 95616. Phone: (530) 758-4964. Fax: (530) 758-7914. E-mail: swbarthold@ucdavis.edu Received August 9, 2007; Revised November 1, 2007; Accepted December 26, 2007. 

The effectiveness of antibiotic treatment was examined in a mouse model of Lyme borreliosis. Mice were treated with ceftriaxone or saline solution for 1 month, commencing during the early (3 weeks) or chronic (4 months) stages of infection with Borrelia burgdorferi. Tissues from mice were tested for infection by culture, PCR, xenodiagnosis, and transplantation of allografts at 1 and 3 months after completion of treatment. In addition, tissues were examined for the presence of spirochetes by immunohistochemistry. In contrast to saline solution-treated mice, mice treated with antibiotic were consistently culture negative, but tissues from some of the mice remained PCR positive, and spirochetes could be visualized in collagen-rich tissues. Furthermore, when some of the antibiotic-treated mice were fed on by Ixodes scapularis ticks (xenodiagnosis), spirochetes were acquired by the ticks, as determined based upon PCR results, and ticks from those cohorts transmitted spirochetes to naïve SCID mice, which became PCR positive but culture negative. Results indicated that following antibiotic treatment, mice remained infected with nondividing but infectious spirochetes, particularly when antibiotic treatment was commenced during the chronic stage of infection.

Full article:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18316520

May 22, 2008

Doctors blog on Lyme awareness and recognition

 Posted with permission

Janete Cabral, Monday, May 19, 2008.

Hi guys!

Just thought I would update some news as some of you have asked why I had not posted as often lately. Rest assured I am still writing plenty! This is my perspective as a doctor and a patient of the failing medical profession’s attitude towards the unknown. The last paragraphs sum it all.

It all started after a visit to a farm in late December 2007, beginning of summer in New Zealand. I was bitten by a tick and not noticed it at first. Within a few days I started with a few random symptoms which I won’t go into too much detail just now. I thought I was very unlucky, succumbing to a few ailments at the same time. I carried on working but felt very tired.

One day my left axillary lymph nodes became very enlarged and painful and that was when I noticed the remainders of an engorged tick…I was horrified as you can imagine. It was a friday evening, too late to go to my health center and I did not want to burden the guys after hours. So I self prescribed penicillin. The symptoms worsened as I experienced the Herxheimer’s reaction ( healing crisis ) which happens in Lyme disease. I was certain then the tick was a carrier of Borrelia burgdefori, responsible for the disease.

I saw a GP the following monday who prescribed me Augmentin for one week given my fever and symptoms, but failed to realize the urgency of early adequate treatment in Lyme Disease, despite all good intentions.

After I voiced my concerns, a colleague mentioned the name of a Microbiologist Specialist with an interest in Infectious Diseases, who kindly saw me in short notice. Unfortunately after the consultation he did not think it was a tick. Even though I saw it with my own eyes and asked a friend to confirm it and then removed it with tweezers. I was told to take painkillers and that I was probably suffering from a viral infection. Oh yes, the old virus excuse…The term some of my colleagues use when they don’t know what is going on…

You can imagine my frustration. I was finding it very difficult to walk and had a lot of bone pain and numbness and at times a very high fever. Lyme disease or not, as a doctor I knew something was wrong. Still I wanted to make the most of my New Zealand experience so I carried on working to afford my caravan holiday in the end. I self prescribed once again and took antibiotics for three weeks.

I actually began to feel better soon after and went on to have the holiday of a lifetime! I loved my ” Jucy ” caravan and saw much of the beautiful South Island as portrayed in the photos I have posted on this site. I was able to do sea kayaking in the Abel Tasman, glance at the Glaciers and gently hike in the Southern Alps. It was an unforgettable experience, so much so I did not want to come back to the UK. I enjoyed the freedom of the road, the pleasurable scenery, the laid back attitude far from the ” rat” race.

When I came back, I worked in Accident and Emergency for two months but slowly symptoms started to come back. I had vowed to find out the truth about what happened anyway, but now with the symptoms again it prompted me once again to ask for help. I quit my job and visited family for two weeks in Portugal. I was referred there to the Institute of Tropical Medicine and tests came back positive for Lyme Borreliosis.

Funnily enough a few days later I actually developed the Bull’s eye rash, which when encountered is pathognomic of Lyme Disease… so much for irony, I did not need any tests then.

I have been taking doxycycline since and I am seeing a specialist at the Liverpool School of Tropical Medicine tomorrow.

So why the long post? I wanted to make a point. Not necessarily about me specifically as I am only one of many who suffer from this silent plague. But the fact that I am a doctor, I was able to recognize and reach for early treatment as this often betters the chances of full recovery. I am thankful for that. However I feel very sorry for all those who were not so lucky. Those who faced the medical establishment illiteracy regarding Lyme Disease and could not ask for help. As doctors we fail to listen to the patient. And when we cannot explain the medical mystery we attempt to give it some sort of name, some sort of virus perhaps. And failing that we accuse the patient of fabrication of symptoms, of somatomization, in summary “all in their head”. As a doctor I will confess I did not know much about Lyme, only enough to think of it as a differential diagnosis. But I also like to think that when I am faced with something I don’t know much about, I ask for help. A second opinion, a referral; I acknowledge my own limitations in the interest of best patient care. But so many doctors don’t…

So to all you lymies out there I wish you the best of luck. Talk to your doctor and if he/she does not listen despite all good intentions ask another and another…

http://writingcraft.blogspot.com/2008/05/lyme-disease.html

July 10, 2007

Long-term antibiotic treatment in Lyme disease - Submitted by Panda Eyes

Filed under: Treatment — @ 8:12 pm

Clinical Microbiology and Infection,
Volume 11, Supplement 2, 2005

Impact of long-term antibiotic therapy on symptoms evocative of chronic Lyme disease

J. Clarissou, J. Salomon, D. Guillemot, C. Bernede, F. Ader, L. Bernard, C.M. Perronne (Garches, Paris, F)

Objectives: chronic lyme disease (CLD) could be partly due to the persistence of Borrelia. The aim of our study is to determine the effect of long term antibiotic therapy on heterogeneous symptoms evocative of CLD.

Methods: 100 patients (pts) (65% female, mean age 45 y) with a diagnosis of CLD were included in an open study.

A clinical score was designed based on the following items: erythema migrans (56% of cases), positive serology for Borrelia (51%), tick bite (69%), combination of categories of signs or symptoms: systemic (88%), neurologic (94%), articular (91%), cutaneous (76%), psychiatric (77%), cardiorespiratory (73%) or muscular (67%).

Diagnosis was classified as very probable (67%), probable (25%) or uncertain (8%), according to the clinical score.

An antibiotic therapy was given for 3 to 6 months (penicillin G, ceftriaxone, amoxicillin, doxycycline or clarithromycin). The number (No) of subjective symptoms (SS) and objective signs (OS) was measured at day 0 (D0), month 3 (M3) and M6.

Results: The No of pts with 4 or more categories of signs or symptoms was 82% at D0, 34% at M3 and 31% at M6. The mean No of SS was 12 at D0, 6 at M3 and 5 at M6. The mean No of OS was 2.7 at D0, 1.4 at M3 and 1 at M6. The differences were significant for very probable or probable cases (p < 0.001).

Conclusion: This study shows an important improvement of the clinical conditions of pts with CLD treated with a prolonged course of antibiotic. A controlled randomized trial with a strict case definition and a follow up longer than 3 months is needed.

March 10, 2007

ME, CFS and Fibromyalgia - Submitted by Peter Fogarty

Filed under: Treatment — @ 12:50 am

For those people experiencing chronic health complaints.

http://www.myalgicencephalomyelitis.co.uk/

“I have developed a website containing a wide range of different links to sites about chronic diseases, including information on ticks, ME and CFS. Unlike other sites, this site is aiming to provide simply a range of links - the user needs to decide if or what is appropriate for them, there are so many different options to choose, that any one idea would probably not work for everyone. I list sites which are useful and of high quality.

Peter Fogarty”

November 26, 2006

NHS Primary care question answering service, Lyme disease - Part 2

Filed under: Treatment — @ 5:03 pm

What is the recognised treatment regime in Lyme Disease?

Answer:

Clinical Evidence have a chapter on Lyme Disease [1] where it discusses a number of interventions for a number of scenarios:

Prevention

Beneficial:
Prophylactic antibiotics after Ixodes scapularis tick bites in Lyme disease endemic areas in North America

Lyme disease arthritis

Likely to be beneficial:
Cefotaxime (more effective than penicillin)
Ceftriaxone (more effective than penicillin)
Doxycycline (as effective as amoxicillin plus probenecid)
Penicillin (more effective than placebo)

Late neurological Lyme disease

Likely to be beneficial:
Cefotaxime (more effective than penicillin)

Unknown effectiveness:
Ceftriaxone (in people with late neurological Lyme disease who had previously been treated)
Ceftriaxone (in people with late neurological Lyme disease)

Likely to be ineffective or harmful:
Ceftriaxone plus doxycycline (in people with late neurological Lyme disease who had been previously treated)

A recent American guideline also discusses treatment [2]. It produced a number of key recommendations relating to treatment:

The early use of antibiotics can prevent persistent, recurrent, and refractory Lyme disease.

The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course.

The practice of stopping antibiotics to allow for delayed recovery is not recommended for persistent Lyme disease. In these cases, it is reasonable to continue treatment for several months after clinical and laboratory abnormalities have begun to resolve and symptoms have disappeared.

However, the full section in the guideline gives much more detail and we recommend you read that (http://www.guidelines.gov/summary/summary.aspx?view_id=1&doc_id=4836)

References

1) Clinical Evidence. Lyme Disease. 2003 (http://www.clinicalevidence.com/ceweb/conditions/ind/0910/0910.jsp)
2) Evidence-based guidelines for the management of Lyme disease. Expert Rev Antiinfect Ther 2004;2(1 Suppl):S1-13. (http://www.guidelines.gov/summary/summary.aspx?view_id=1&doc_id=4836)

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