Aug 27, 2008
that doc needs to read up on lyme disease.if your tests are coming back w lyme antibodies you are testing(+) for lyme.I know it's hard to get dx'd for lyme in canada,but is changing docs an option for you? one who has a clue... attatched is a medical journal i found.please print and show it to an MD.
This was written by an MD who has a clue
Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.
Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.
Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).
If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.
There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).
Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).
To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients
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Male, 52 years
oriskany falls - NY
Member since Aug 2008
Mood: bruce622 dismayed...
, Aug 25, 2008 02:36PM
Lyme disease controversy spreading across Canada
Last Updated: Wednesday, August 6, 2008 | 1:28 PM ET Comments26Recommend54The Canadian Press
Mitch Thibodeau recently set off by car from his Calgary home to travel eastward across the country on a mission to find a doctor to continue his long-term treatment for Lyme disease.
Diagnosed with the illness, which he believes he contracted from an infected tick in 2000, Thibodeau has been on antibiotics for the last two years. But the B.C. doctor who has been prescribing the drugs has retired, and Thibodeau can find no physician in his home province who will continue the treatment.
'There are some people who have got the idea that there's a plot out there, that we're trying to hide how many people have Lyme disease.'
— Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada"Once they run out, I'll be in big trouble," Thibodeau, 37, says of the drugs, which are intended to eradicate the corkscrew-shaped bacteria that can burrow into cells throughout the body if not treated soon after infection.
The former recreational long-distance runner now works only part-time. He says his life plans have been put on hold by years of Lyme-induced debilitating pain in his hip, neck and shoulders, as well as by cognitive problems like short-term memory loss.
Stories like Thibodeau's are rife when it comes to Lyme disease, which is caused by the bacterium Borrelia burgdorferi and is transmitted through the bite of infected black-legged ticks in parts of Canada and the United States and the Western black-legged tick in British Columbia.
The disease, first identified in Lyme, Conn., in 1975, has become the source of a brewing controversy.
Patient advocacy groups contend the disease is on its way to reaching epidemic proportions in Canada and is being improperly diagnosed and treated, while the bulk of the medical community raises a skeptical eyebrow to that assertion, saying there is no scientific evidence that cases are raging out of control or that long-term antibiotic treatment is warranted.
What is known is that there are several areas in Canada where the ticks are established — among them, parts of Nova Scotia, southern Ontario, Manitoba and B.C. — and they appear to be making further incursions.
Tick avoidance tips
If infected ticks are in your area, wear long-sleeved shirts that fit tightly around the wrist, and long-legged pants tucked into socks or boots. Light-coloured clothing makes it easier to see if there are any ticks on your clothes.
Wear shoes that cover the entire foot — avoid sandals in areas where ticks might be.
Use insect repellents that contain DEET to repel ticks. Repellents can be applied to clothing as well as exposed skin.
When you come back inside, check clothing and entire body for attached ticks. Nymphs can be the size of a pinhead, while adults are larger. Prime areas for bites include the back of the knee, armpit and groin.
After extracting tick, wash bite site with soap and water, followed by alcohol or household disinfectant if desired.
Save tick in empty pill vial or doubled ziplock bag. If you develop symptoms of Lyme disease, the insect can be sent for testing to help diagnosis.
Contact your health provider immediately if you develop a rash or other symptoms.
Keep grass on property cut to reduce habitat for ticks. Check pets regularly for ticks.
Source: Public Health Agency of Canada
"We have been documenting new locations for the tick, indicating spread," agrees Harvey Artsob, chief of zoonotic diseases for the Public Health Agency of Canada.
"This year, we have seen evidence for the first time that there may be established populations in New Brunswick. We don't know if any of the ticks are infected."
Artsob acknowledges the annual caseload could tally "in the low hundreds" because early cases treated promptly may not be captured in reporting data. "We sometimes hear some people say there are thousands of cases. We absolutely disagree with that. We don't think the numbers are that high."
The Canadian Lyme Disease Foundation believes the Public Health Agency of Canada and other official bodies are gravely underestimating the burden of Lyme disease in the country. The group contends that the annual infection rate is closer to 2,000 cases and could be as high as 20,000.
Mary de Lisser of Abbotsford, B.C., a spokeswoman for the group, recalls developing a rash shaped like a bull's-eye on her calf while camping on Vancouver Island in 2002. Over time, she developed increasingly severe pain and weakness throughout her body that put her in a wheelchair for several months, and she suffered cognitive problems that left her unable to work.
It was not until she began searching the internet that she came across photos of the telltale circular rash she had experienced — but her doctors were reluctant to even consider Lyme disease, insisting it wasn't present in Canada.
"I was a Lyme leper," de Lisser says. She did eventually get diagnosed and treated by Ernie Murakami, a Hope, B.C., family physician who saw his first tick-inflicted Lyme case in 1994.
De Lisser's group has called on Ottawa to institute a national Lyme disease strategy. It wants better diagnostic testing — it says the ELISA antibody test used in Canada as a first-line investigation results in too many false negatives and a second test known as the Western blot is far superior. Many patients have resorted to sending blood samples to U.S. labs for Western blot, paying anywhere from $400 to $900 for what they deem a more accurate result.
The Lyme disease foundation is also calling for the Canadian medical community to create its own prescribing guidelines that would include long-term antibiotic treatment. Currently, doctors follow guidelines from the Infectious Diseases Society of America, which strongly objects to continuing the drug therapy beyond 30 days, saying patients gain no benefit and may suffer potential harm.
But the IDSA guidelines, updated in 2006, have come into disrepute after Connecticut's attorney general began investigating the medical body over alleged conflicts of interest by the panel members that created them. A new panel is being convened.
'It has to be more than just three weeks'
Murakami, who says he has treated about 3,000 Lyme disease cases at his B.C. family practice since 1994, says doctors are deeply split over the IDSA guidelines. "The guidelines have got to be changed," he says, asserting that once the bacteria becomes embedded in tissues like the heart, brain and nerves, it is very difficult to kill.
"This is the difficulty that doctors don't understand. That's why it has to be more than just three weeks of antibiotics," says Murakami, who has a degree in bacteriology and immunology. "There are lots of people suffering."
But Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, says overuse of antibiotics can lead to such complications as the bowel disease Clostridium difficile and can give rise to drug-resistant bacterial strains.
Furthermore, Evans says, the advent of advocacy groups on the internet has turned Lyme into the diagnosis of choice for many people. "And I'm frankly very concerned that Lyme disease has been grabbed by a lot of people who are trying to find explanations for a whole host of disorders which continue to defy medical diagnosis and management.
"So the extreme part of this, unfortunately, is that there are some people who have got the idea that there's a plot out there, that we're trying to hide how many people have Lyme disease," he says. "There's no evidence whatsoever that we're now seeing a huge epidemic of Lyme disease. There's no evidence that it's being unrecognized by physicians all over the place."
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