It is always frustrating when things don’t change & history repeats itself over & over. Some recent changes in the US may set the way for fresh new thinking. Currently many Lyme guidelines across the world, including Europe are linked heavily with the IDSA philosophy that Lyme is easy to treat & easy to find in the patient through two tier antibody testing. However, many research studies, patients & their doctors have pointed out that Lyme can in fact be evasive when it comes to testing, the immune system & antibiotic treatment & very persistent in brain, organs & tissue.
For a long time now we have needed far more research, knowledge, education & most importantly adequate treatment for chronically ill patients. Lyme can cause so many complications that there simply is no ‘one size fits all’ treatment package suited to all patients. It heavily depends on length of infection, the patients ability to handle medication, the number of co-infections carried by the tick & the state of the immune system in getting the bacteria under control.
Here below are a couple of new announcements in the States. Let’s hope they pave the way for a better future for Lyme patients here in Europe.
Blumenthal Takes On Ticks
New Haven Independent
by Thomas MacMillan | Jul 18, 2011 2:41 pm
The new bill will aim to develop better diagnostic tools
Blumenthal and two other senators Monday introduced the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, a bill which would target the pernicious Lyme disease, named after the Connecticut town where it was first discovered.
The legislation would provide money for research on the diagnosis and spread of the tick-borne disease. The Ag Station has been involved in such research for years, and could see an increase in funding as a result of the bill.
“I’ve seen firsthand the damage done by Lyme disease,” Blumenthal said. The disease often goes undiagnosed and untreated for years, leaving people with chronic symptoms like headaches and fatigue. There were 30,000 cases of Lyme disease reported nationwide in 2009, but the true number of infected people is probably 10 times that, because it’s so under-reported, Blumenthal said.
The new bill would do several things: establish a tick-borne disease advisory committee through the U.S. secretary of health and human services, direct Health and Human Services to develop better diagnostic tools and collect better information on the prevalence of Lyme disease, and increase public education on Lyme disease.
Virginia Task Force
Commonwealth of Virginia
The Governor’s Task Force on Lyme Disease
Adopted Unanimously on June 30, 2011
A 19 page report was published outlining recommendations made for diagnosis, treatment, public education & prevention, and children. A small snippet is below…
There is no serological test that can “rule out” Lyme disease
A significant proportion of patients with Lyme disease may never develop or observe such a rash
1. As acknowledged by the CDC, Lyme disease and many related tick-borne illnesses cannot be adequately diagnosed by serology alone in many cases.
2. There is no serological test that can “rule out” Lyme disease.
3. Clinical diagnosis that may be supported by serology remains the proper method for the diagnosis of Lyme and related illnesses.
4. Clinical diagnosis is not limited to the observation of an EM rash. A significant proportion of patients with Lyme disease may never develop or observe such a rash. Moreover, the EM rash can manifest in non-traditional patterns. The medical community needs a more comprehensive set of visual illustrations so that non-traditional patterns may be properly recognized.
5. Many lay witnesses testified that members of Virginia’s medical community inaccurately believed that serology alone can “rule out” Lyme disease.
6. According to lay testimony, there are some members of the Virginia medical community who have refused to consider a diagnosis of Lyme and related illnesses on the ground that “we do not have Lyme in Virginia” or in this “part of Virginia.” Lyme disease is present in all parts of Virginia, endemic in most parts of the state, and emerging throughout the Commonwealth.
7. The testimony that came before the Task Force relayed the highly questionable nature of the ELISA test for early localized disease. We encourage the use of clinical judgment at all stages due to the significant limitations of current serology.
8. We recommend that the VDH reporting form include the disclaimer “The CDC case definition is designed for surveillance purposes only. Clinical judgment should be exercised in assessing patients for Lyme disease as meeting the surveillance case definition is not required for the diagnosis of Lyme disease.”
9. Since ticks often carry multiple pathogens and we received testimony that many Virginians have multiple tick-borne illnesses that may require comprehensive analysis and treatment, the medical community should be educated on the presence of co-infections.
10. Great caution should be taken whenever a black-legged tick is attached and especially if it is engorged. Patient reports about the length of time of attachment can be unreliable as some patients may not have observed the exact moment of attachment. Medical providers should be at their liberty to treat Lyme disease prophylactically in such cases because of the high risk of disease. (Note that single-dose prophylaxis may lower the sensitivity of subsequent serology, as stated by the CDC.) Moreover, it is clear that early treatment is very important to prevent many serious complications of Lyme disease. (more points included in the report…)
There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment
1. There is no serological test that can tell a medical provider when a patient has been cured of Lyme disease.
2. A typical criterion that a patient is well is when the symptoms have resolved and the patient feels better.
3. There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.
4. We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.
5. Expert testimony regarding effectiveness of long-term antibiotics conflicted. We encourage additional studies to evaluate the effectiveness of long-term antibiotics as treatment for Lyme disease.
6. The Department of Health Professions should inform its licensees that the department does not target clinicians for disciplinary action by virtue of their antibiotic choice of management of Lyme disease.
7. Lay witnesses expressed displeasure with the propensity of the medical community to treat persons who were ultimately diagnosed as late stage Lyme disease, to need psychological evaluation or treatment. Lay witnesses testified this was often done in a demeaning fashion and appeared as an excuse for the medical community’s failure to adequately understand the problem of Lyme disease.
8. Lay witnesses stated that long term treatment of Lyme disease is often not covered by their insurance carriers and that they can spend thousands of dollars per month for their treatment plan. The extent to which this is occurring is unknown to the Task Force and the Task Force recommends that this issue be evaluated by the Bureau of Insurance.
New merchandise at Tick Talk Ireland
Good news – Tick Talk Ireland is now stocking awareness ribbons & computer bugs at 2 euros each (click on picture to see larger image)
To order any Tick Talk merchandise including tick twisters, mosey on down to our site at: http://ticktalkireland.org/merchandise.html
RTE Radio Liveline with Joe Duff recently focused on Lyme Disease. If you missed the show click here for more info.
Recently uploaded to our links folder – the German Borreliosis Society Guidelines with suggestions for treatment for all stages of the disease, including late lyme/chronic manifestations.
Our tick survey continues to be a success. Some of the findings will be published in the coming weeks. Click here for a reminder of all our surveys!