Diary of a Mad Scientist

I took the van for a spin after it came back from the burned garage, and everything was fine- the transmission survived the van’s being dragged by my rescuers (I believed Kevin on that point, of course, but had a nagging worry that something would be expensive as a result of the near-loss).

I’d forgotten how many systems are affected when the vacuum pump acts up- that’s what Kevin had just fixed when the fire happened.

It was raining hard yet again, I spun myself down Highway 1 in the dark, stomping on the accelerator and doing all those other evil things we like to excuse in the name of ‘test drive’. I spun the beast up to 90 mph, committing various crimes against future generations’ climate in the process, listening for new noises and trying to re-connect with the sound of this beast before I set off on a mini-tour across the West Virginia mountains, to Ohio and Chicago. I’ve been driving an 81 Rabbit in California most of the spring and hadn’t driven the van much for much of the winter. The van had just gotten updated registration and I felt freedom kicking me in the brain, watching mentally as this big grin started to spread across my face as the exciting reality of the impending trip crept up.

And I got this ice-cold, stirring endorphin shiver when I heard the whistle of the turbocharger kick in. I hadn’t heard the turbo in months as it’s affected by vacuum leaks and I hadn’t been driving. I hadn’t felt that whole-body shiver since the last time I saw an old flame unexpectedly.

I think I’m in love with this thing.

These are a few of my favorite things:

turbochargers

diesels with nothing noticable coming out of the tailpipe

Crosscountry trips in the van in my pajamas. Yep, it’s my bedroom also, and these are my pajamas. Got a problem with that?

Not having to stop at gas stations on crosscountry drives with extra biodiesel on board

(OK, the picture below, from the first trip I did with the van when I brought it back to Calfornia, is a bit excessive- it’s getting a bit ridiculous when I choose to share my bed with a couple of barrels of fuel- but still, you get the point. PS I don’t know what happened to my eyebrows there.)

Camping at a campground during a class weekend instead of being in a hotel. That’s where I am right now, teaching class at a community college diesel program in a small Ohio town by the West Virginia line. Aah, it’s warm enough again to be doing this more sanely than the airport-and-hotel method. Oh, bliss.

I got bit by another tick a couple of weeks ago, and I’m seriously fighting off something or another, probably as a result. I’m back to having exhaustion, sleep problems, brainfog, air hunger, and this absolutely excruciating Lyme-type neck pain that is supposedly a form of meningitis caused by the disease. For me, the neck pain came with my initial Lyme infection, and it still sometimes flares up when I have a relapse or when something mercury-poisoning-related happens, so I’m not sure that it’s a sign that my latest bite is specifically a Lyme reinfection (which I don’t really think is likely based on my other symptoms) or just an infection with something else. My immune system has been absolutely TRASHED all winter- so even if the tick only had staph or something rather than Lyme and it’s common coinfections, I’m sure my system is just stresssed fighting it, and the standard ‘relapse’ symptoms are what I’m feeling. The standard medical cliche is that “ticks are sewers"- they carry a bazillion pathogens from mammal to mammal, and this one was an adult, meaning it had had a few life cycles and previous blood meals in which to pick up various nasty things before getting me.

Right before this happened my doctor suggested putting me on low dose naltrexone, an experimental therapy for immune function sometimes used for AIDS and cancer patients, so I’m hoping to start improving things this summer as I’m sick of fighting off colds and flu and other issues every three weeks. LDN is kind of exciting stuff- I didn’t know there was anything that western medicine really had for generalized immune function- and LDN works by regulating brain hormones that regulate the immune system. I had just spent the winter reading a large number of books about the biochemistry of the brain, so it was quite interesting to learn that there’s actually a practical application of that theory that seems to work some of the time (incidentally, I’ve heard on the internet that it doesn’t help all Lyme patients, but my particular issues seemed to be specifically immune system problems, not active infection)

I found the tick on my hip, just like when I got Lyme the first time, and now have a local skin infection around the bite and swollen lymph nodes just on that side (the doc put me back on antibiotics by the way). I’m starting to think about getting a tick tattooed on my hip- I’ve never wanted to commemorate anything before via tattoos, but this damn disease has been such a defining crisis in my life that I think it’s going to make it onto my skin.

re-posting this because it got buried in my Lyme posts the last few days:

Biodiesel Essentials class in Marietta, OH May 17-18, 10-5 each day
With Maria ‘Mark’ Alovert, author, Biodiesel Homebrew Guide and co-founder of www.biodieselcommunity.org

at Washington State Community College Auto/Diesel Truck Systems department, room 121.
$120, no one turned away for lack of funds

Biodiesel fuel, which runs in any diesel engine and some heating equipment, can be made in your backyard or garage for under $1 a gallon with common ingredients, using very inexpensive equipment. Relatively little chemistry knowledge is needed to produce quality fuel that will run in any diesel engine, and thousands of people around the country have discovered homebrewing fuel to be an addictive hobby. Come learn what it takes to produce your own clean-burning biodiesel fuel, and to build the equipment to do so.

These classes are hands-on and fast-paced - you’ll be making test batches of fuel, titrating and testing oil, and assessing quality of the finished product throughout the two day class. There will be a full-scale home biodiesel reactor and system at the class site, and we will make a batch of fuel in it to demonstrate the process, and will discuss equipment design for larger systems. This class is a good preparation for the Chicago-area advanced ‘farm-scale biodiesel production’ class happening at the end of May (see www.girlmark.com/tour for details).

To register for the class, please go to www.girlmark.com/tour and register online, or simply show up on the morning of the first day.

The class is held at Washington State Community College in Marietta, OH:

here’s a map of campus, you’ll be looking for Auto/Diesel Truck Systems department, room 121:
http://www.wscc.edu/Main/maps.asp

Biodiesel Essentials is a two-day class for either beginners or those who want a refresher on quality control. I also teach a series that includes more advanced topics, for more of those workshops please see www.girlmark.com/tour.

Some topics covered in the Biodiesel Essentials class:

biodiesel/SVO/solvent thinning options and history, biodiesel chemistry, testing oil (titration and water testing), (hands-on), making test batches (hands-on), an overview of equipment, a tour of the full Appleseed-type processor and some more sophisticated wash systems than usually seen in homebrewing, long discussion of quality control factors, quality testing (hands-on), mistwashing and other water washing options, breaking emulsion (hands-on), two-stage base biodiesel (hands-on), waste water and glycerine disposal, glycerine burners for process heat, water reuse and uses for glycerine, common pitfalls, hands-on experience recovering from failed batches, safety

contact: classinformation@girlmark.com

There have been a couple of good articles (and many bad ones) recently about the IDSA/Connecticut Attorney General Blumenthal settlement regarding Lyme treatment guidelines.
Below are two good ones, and some of the comments from the publications:

Medical groups differ on courses of treatment
By Robert Miller Staff Writer

http://www.newstimes.com/ci_9231161
05/12/2008

In the battle over how best to treat Lyme disease, a new settlement between Attorney General Richard Blumenthal and a major medical group might seem to offer at least a little hope of expanded treatment for those with the tick-borne disease.

That, however, would involve a change in the lines of debate over the disease, and it’s not clear there will be any yielding.

The settlement, reached this month between Blumenthal and the Infectious Diseases Society of America, provides for a review of the IDSA’s guidelines for treating Lyme disease – guidelines that a second group of doctors, the International Lyme and Associated Diseases Society, say are strict and inflexible to the point of harming some patients.

But the IDSA’s guidelines will remain unchanged until that review ends. And while the review process will include the participation of an ombudsman, the guarantee that opposing voices will get their say, and hearings that will be broadcast on the Internet, they may not yield a single change, said Dr. Eugene Shapiro, a pediatrician, epidemiologist and professor of investigative medicine with the Yale School of Medicine in New Haven.

Asked last week if the IDSA guidelines could remained unchanged after the review, Shapiro said flatly, “Yes.”

“If the scientific data recommends a change, we’ll be happy to change,” Shapiro said. “But we have 25 years of research on Lyme disease. We feel very comfortable the guidelines will stand up to any scientific scrutiny.”

Doctors who are opposed to the IDSA guidelines said they believe there’s at least a chance their position – that infection from the Lyme disease bacteria Borrellia burgdorferi can create a chronic illness that needs long-term treatment with antibiotics – will gain some credence with the review panel.

“I hope it will lead to an improvement to patient care,” said Dr. Steven Phillips of Wilton, who has been one of the doctors opposing the strict guidelines in favor of those in which doctors can tailor treatment to individual patients.

Phillips is a past president of the International Lyme and Associated Diseases Society, which believes there is ample scientific evidence to treat people for chronic Lyme disease.

“We’ve looked at the same evidence as IDSA and come up with significantly different conclusions,” said Dr. Daniel Cameron of Mount Kisco, N.Y., the current president of the group.

This isn’t a merely a spat between two opposing medical groups.

In a press release, Blumenthal’s office pointed out that insurance companies now use the IDSA guidelines to restrict care for patients and refuse to pay for long-term antibiotic care.

“It’s a good way to have people denied insurance,” said Maggie Shaw of Newtown, a member of that town’s Lyme Disease Task Force. “It also puts the fear factor in doctors.

“Here are two standards of care, but only one gets recognized,” Shaw said. “It’s because of the stranglehold the IDSA has on this.”

The settlement between Blumenthal and the IDSA came after Blumenthal sued the group – which represents about 8,000 infectious disease specialists in the United States – in 2006 for antitrust violations.

Blumenthal said his investigation discovered many examples of conflicts of interest among the doctors who wrote the IDSA guidelines. He also said they refused to “accept or meaningfully consider” any evidence concerning chronic Lyme disease in writing the 2006 guidelines and blocked the appointments of scientists and physicians who differed with the IDSA view that all Lyme disease can be treated with two to four weeks of antibiotics and that chronic Lyme disease does not exist.

“Our focus has not been on medicine but the process,” Blumenthal said. “There may have been violation of the law and it’s my job to enforce the law.”

Dr. Sam Donta, a Massachusetts-based infectious disease specialist, was on the panel that drew up the IDSA guidelines. Donta said he refused to sign off on the guidelines when the group refused to acknowledge that chronic Lyme disease is a problem.

–The issue should not be whether there’s chronic Lyme disease, but why we’re seeing these patients,” he said

The review process established in the settlement, Blumenthal said, will be “fair, open and free of conflict.” Donta said Friday he hopes to serve on the panel.

But in its own press release on the settlement, the IDSA emphatically denies there was any “significant” conflict of interest on the part of any of the doctors who wrote the 2006 guidelines, or that they excluded conflicting points of view while writing them.

In fact, Shapiro said, having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times and prescribe only short-term regimens of generic antibiotics.

Shapiro said the IDSA agreed to the settlement simply to end any attempt by Blumenthal to take the case to court.

“The alternative was spending a lot of money in an expensive lawsuit,” he said.

Shapiro said all the scientific evidence on long-term treatment of Lyme disease, including five double-blind studies in which some patients got antibiotics and others a placebo, show that long-term antibiotics did not cure the symptoms that people include in the diagnoses of Lyme disease.

“It’s not that data isn’t there. It is,” he said, pointing out that 95 percent of all Lyme cases are successfully treated with only two or three weeks of standard antibiotics.

But Cameron said the double-blind studies, all with a small number of patients, only show that Lyme disease is complicated.

“The evidence is quite mixed,” he said.

And the trials often look at the effect of just one type of antibiotic on patients, Donta said.

“If one doesn’t work, do you say all antibiotics don’t work?,” he asked. “If one cancer drug stops working, do you not try and find another? There’s insufficient information in the guidelines for physicians to make a decision.”

Phillips of Wilton said many peer-reviewed articles published in medical and scientific journals make the case that chronic Lyme disease does exist.

What they hope the new review of the IDSA guidelines do, they said, is take all this into account and give doctors a chance to treat each case individually, rather than with a one-size-fits-all approach.

“Let the doctors have some flexibility,” Cameron said.

Contact Robert Miller at bmiller@newstimes.com

Some good comments from newstimes.com site:

first of all, my own comments:

For an example of a very flawed double-blind study often cited by the IDSA guidelines authors to back up their allegation that long-term antibiotics don’t help chronic lyme patients, see this analysis (by a firm that specializes in analyzing medical studies for hidden bias for use in court cases):
http://www.verimresearch.com/Verim%20Research…

In brief: the often-cited Klempner study took a very small number of patients who had already had treatment failures with antibiotics (meaning they were difficult cases for whom antibiotics don’t work well), then treated them for only 30 days with an IV antibiotic and for only two months with oral doxycycline, and then did a subjective symptom survey of the patients and other subjects who received placebo instead of antibiotics.

The study’s authors then proclaimed that because the survey results didn’t differ between the treated patients and those who received placebo, this proves that long-term antibiotics don’t do anything for Lyme.

In reality, the study didn’t really treat it’s patients with anything remotely resembling ‘long-term antibiotics’, and picked an oral antibiotic that frequently fails to show results in those patients who experience antibiotic treatment failures. There were many other flaws- the Verim Research analysis summarizes some of them on page 6 and 7 of the PDF, which are a good introduction to the entire issue of Lyme treatment controversy.

Chronic Lyme patients who are lucky enough to have access to a lyme-literate doctor are often treated with 6 months to many years of antibiotics. For those for whom simple treatment doesn’t work (and for some people it’s specifically doxycycline or amoxycillin that don’t work), doctors may progress to using combinations of antibiotics, or longer treatment with IV. Doxycycline is a first step for many patients but when it doesn’t work more expensive antibiotics, and combinations of antibiotics, are usually prescribed by knowledgeable doctors such as members of International Lyme and Associated Diseases Society (www.ilads.org ).

The Klempner study was designed with many built-in conditions that seem designed to predispose it’s small sample size of subjects to treatment failure, and the IDSA guidelines authors seemed to base their guidelines literature review on similar studies, hand-picked to prove their extreme position.

When the 2006 guidelines were announced, the ILADS president produced a statement that there were something like 1800 good studies on Lyme treatment in existence, but that the IDSA guidelines authors had hand-picked the worst 400 to prove their point.

*****************
Phillis Mervine from CALDA commenting on the article:

Your article quotes Dr. Eugene Shapiro as saying that having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times. That’s because IDSA’s treatment protocol has a 50% failure rate. No intelligent patient with any resources would continue such a self-defeating course when alternatives are available.

What IDSA says, in effect, is that persistent infection can’t be proven to cause symptoms. In early March, the American Society of Microbiology published research that proved that one month of treatment with the IV drug ceftriaxone did not **** all the Lyme spirochetes in infected mice. This is the most recent research to prove persistence of infection.

A few weeks later, IDSA President Donald Poretz sent a letter to members of Congress, saying, “[T]here are no convincing published scientific data that support the existence of chronic Lyme disease.” We wonder what type of evidence the IDSA would accept, if any.

According to previous IDSA statements, equally meaningless are positive Lyme antibody tests plus symptoms; positive Lyme bacteria DNA plus symptoms; post-treatment symptoms; positive brain SPECT scans plus symptoms; tick bite in a known endemic area followed by symptoms.

In case anyone has missed the message, there is no justification for extended antibiotic treatment in the IDSA belief system. Although numerous studies have shown benefit of longer and/or more aggressive treatments, IDSA’s position is that ‘enough is enough’ They oppose treating for longer than two weeks, even when people improve on treatment and relapse when treatment is stopped. Where would people with cancer be today if we treated them like that?

CALDA and other patient advocacy groups tell people to look for a doctor who belongs to the International Lyme and Associated Diseases Society (www.ilads.org ), whose guidelines allow clinical discretion and are flexible. We also refer patients to their local online support group, which in Connecticut may be found at http://health.groups.yahoo.com/group/connecti…

Phyllis Mervine
California Lyme Disease Association
www.lymedisease.org

*************************
and another good comment:
Thank you, Mr. Miller, for your fair and balanced reporting of this issue. And thank you, News-Times, for showing the integrity to support Mr. Miller’s journalistic efforts. Not all of the newspapers in CT have been fair in reporting the results of AG Blumenthal’s investigation, and I am proud of the News-Times for having done so.
As a psychotherapist who sees children and adults suffering from the effects of chronic, persistent, Lyme disease and coinfections, I have seen the damage that is done to the patients and their families by untreated or undertreated Lyme. I have also seen them recover, and be able to resume work and school, when treated efficaciously, comprehensively, by their courageous doctors, who do not give up on them, or put them on paliative care, when they fail to get better in 30 days of abx. I have seen them resume full lives, after months or years of anti-microbial treatment, by doctors who understand chronic Lyme.
By denying the magnitude of the Attorney General’s findings (http://www.ct.gov/ag/cwp/view.asp… ), the IDSA is announcing that they are not accepting responsibility for the corruption in the process found by the Attorney General. By not acknowledging the points made by the AG, they are failing the patients once again, and sustaining the suspicion held by many that they, in fact, do have something to hide.
The attorney general emphasized that his findings were about the PROCESS of developing the guidelines, and this PROCESS was seriously flawed. I urge the readers to check out the text of the AG’s press release on the website. It will clearly show who, in fact, can be believed.
Sandy Berenbaum, LCSW, BCD
Southbury, CT and Brewster, NY

**********************************************

Here’s another good article(from a Maryland newspaper) that just came out:

http://www.stardem.com/articles/2008/05/11/news/32096.txt

Society to review Lyme disease guidelines
By STEVE NERY News Editor
Published: Sunday, May 11, 2008 5:24 PM CDT
The Infectious Diseases Society of America has agreed to reassess its controversial Lyme disease diagnostic and treatment guidelines after an antitrust investigation uncovered serious flaws with them, Connecticut Attorney General Richard Blumenthal announced May 1.

The IDSA guidelines were under fire from Lyme disease patient advocacy groups, including vocal groups in Maryland, for restricting long-term care and denying the existence of chronic Lyme disease. Blumenthal’s move also could affect Congressional bills, now stuck in committees, that aim to develop better testing and treatment for the tick-borne ailment.

“My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists,” Blumenthal said in a statement. “The IDSA’s guidelines improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising relevant questions about whether the recommendations reflected all relevant science.”
According to the IDSA guidelines, patients should receive antibiotics for no more than four weeks.

“United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment,” according to Blumenthal’s release.

Blumenthal’s investigation resulted in several findings, including:

The IDSA failed to conduct a conflict of interest review for any of the panelists on the 2006 panel. Several of them had conflicts of interest, involving relationships with drug companies, diagnostic tests, patents and consulting arrangements with insurance companies.

• The chairman, who had a bias against the existence of chronic Lyme, was allowed to handpick the other members of the panel.

• In 2000, the group removed a panelist who dissented from the position of the others on chronic Lyme disease to achieve consensus.

• The panel blocked the appointments of others by saying was it was already fully staffed, even though more members were later added.

• The IDSA portrayed the American Academy of Neurology’s guidelines as corroborating its own even though it knew both groups shared several authors.

The new panel, which will consist of eight to 12 members, will reassess the 2006 guidelines individually to determine if they are justified, according to Blumenthal’s release. The panelists will all be screened for conflicts of interest and cannot have served on the last panel. At least 75 percent of the members will have to vote in favor of recommendation from 2006 for it to be affirmed.

“We congratulate Attorney General Blumenthal for exposing the IDSA’s conflicts of interest and helping reduce the suffering of Lyme patients everywhere,” said Pat Smith, president of the national Lyme Disease Association.

Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, said it’s terrible that so many people have suffered as a result of the IDSA’s restrictive guidelines. She pointed to the International Lyme and Associated Diseases Society’s guidelines, available online at www.ilads.org, as a better alternative.

Barnes and other members of Lyme disease support groups hope the move will prompt the U.S. Congress to give hearings to bills designed to develop better testing and treatment of the disease. Both introduced in early 2007, Senate Bill 1708 now awaits a hearing by the Senate Committee on Health, Education, Labor and Pensions, while House Bill 741 awaits a hearing from the House Subcommittee on Health.

All of Maryland’s Congressional members, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st, Sen. Barbara Mikulski, D-Md., and Sen. Ben Cardin, D-Md., signed onto the bills. Local Lyme disease groups have been urging Mikulski, a member of the health committee, to help get SB1708 a hearing. Melissa Schwartz, a spokesman for Mikulski, said only Sen. Edward Kennedy, D-Ma., the chairman of the committee, can get the bill a hearing.

The only member from Maryland on the House committee, U.S. Rep. Albert Wynn, D-Md.-4th, removed himself from all his committee assignments weeks ago as he’s resigning from Congress effective in June.

The legislation would provide $20 million annually for five years to help develop better diagnostic testing and treatment, as well as $250,000 annually to fund a tick-borne diseases advisory committee. The committee, to be made up of members of the scientific committee, volunteer organizations, health-care providers, patient representatives and health department representatives, would also work to develop better reporting and enhance prevention efforts.

If not acted upon, the legislation will die at the end of the year, as a similar measure did in 2006. Volunteer groups are planning on showing up at the office of U.S. Rep. Frank Pallone, D-N.J.-6th, from 11 a.m. to 2 p.m. this Wednesday. For more information, visit www.LymeRights.org.

IDSA President Donald Poretz wrote the committee members in March opposing passage of the bills and questioning the existence of chronic Lyme disease.

“The premise for prolonged antibiotic therapy for Lyme disease is the notion that some spirochetes can persist despite conventional treatment courses, thereby giving rise to the vague symptoms ascribed to chronic Lyme disease. Not only is this assertion microbiologically implausible, there are no convincing published scientific data that support the existence of chronic Lyme disease,” Poretz wrote.

Poretz’s letter was dated March 21, meaning it was written after a University of California at Davis Center for Comparative Medicine study concluded that the maximum treatment recommended by the IDSA did not kill all Borrelia burgdorferi spirochetes, the tiny organisms responsible for Lyme disease, in mice in lab tests.

Instead of a federal advisory committee, Poretz proposed the Institute of Medicine of the National Academies conduct a review of Lyme disease diagnosis, treatment and prevention methods, adequacy of current treatment guidelines, treatment options for “post-Lyme disease disorder,” effectiveness of current prevention methods and controversies associated with chronic Lyme disease.

Barnes also wrote the committee members, fearing that if the bills are not passed, “we are going to lose more chronically ill patients to a treatable but very serious infectious disease.”

“The IDSA is so distressed by the possibility that researchers outside their tight-knit group will be allowed to sit at a table and present scientific evidence and recommendations that could prove them wrong, they are willing to fight bills and forfeit the much-needed $100,000,000 in research funding they would provide over five years, just to keep from being exposed,” Barnes wrote.

Barnes cited several passages from the Food and Drug Administration, National Institutes of Health and the Centers for Disease Control which refer to the chronic Lyme disease that the IDSA denies exists.

“No patient wants to have antibiotic treatment without good reason and good science backing the protocols; and no doctor wants to prescribe treatment if it is not needed, as the IDSA would have you believe,” Barnes wrote. “That deduction is as absurd and preposterous as a person wanting to have chemotherapy if they didn’t need it.”

Barnes also pointed out that the IDSA recommends against using several antibiotics that produce an anti-inflammatory effect except for Doxycycline, the cheapest of them all.

Biodiesel Essentials class in Marietta, OH May 17-18, 10-5 each day
at Washington State Community College Auto/Diesel Truck Systems department, room 121.
$120, no one turned away for lack of funds

This two-day class will teach you everything you need to know to get started making high-quality biodiesel fuel out of waste vegetable oil. We will also have a full ‘home-scale’ biodiesel system on a trailer on site, and will discuss equipment design for larger systems. This class is a good preparation for the Chicago-area advanced ‘farm-scale biodiesel production’ class happening at the end of May (see www.girlmark.com/tour for details).

To register for the class, please go to www.girlmark.com/tour or simply show up on the morning of the first day.
map of campus, you’ll be looking for Auto/Diesel Truck Systems department, room 121:
http://www.wscc.edu/Main/maps.asp

For the past few months I’ve been slowly working on the van. I have two biodiesel classes coming up in the Midwest, one in Ohio next weekend, and one in Chicago after Memorial Day. Earlier this winter, I replaced the computer and parts of the the glow plug system, and the only real problem left has been that my vacuum pump is starting to go and I didn’t want to mess with the incredible hassle of working inside the cramped engine compartment of my van. My friend Gimpy calls working on van components “ship in a bottle” work because of the lack of access.

I’ve been planning on getting North Carolina license plates this week but had temporarily misplaced my second ID when it took a nap in my lab notebook by accident, so I was stymied a few days ago when I’d planned on turning in the California plates.

I rented a car so that I could still do a whole bunch of errands while the van is out of commission, and a few days ago, Matt and I went down to Chatham Alignment to leave them the van. Chatham Alignment is a heavy truck shop 10 minutes south of town, and for years they have been the default repair shop for all of the co-ops horrible and abused old trucks. The co-op is really hard on trucks. I think I may have presided over the last days of the janky dodge last month when it, on my watch, it developed an inexplicable electrical problem that no one can find. The Janky Dodge now shuts off on it’s own, but only when in the midst of a drive around the traffic circle in town. Last month Matt nearly lost his brakes in the (1989 model) BioDually, which has already received a new engine and transmission on the co-op’s shift. I believe that the BioBox, which burned up this fall after burning up an enormous amount of co-op dollars, it is still sitting somewhere on the property while Matt tries to sell the remnants on Craigslist. I hear that someone at Chatham Alignment once called it the BioJunk. As we drove away I made comments to Matt on how huge their lifts and bays were. He made fun of me mercilessly for liking big lifts. I can’t help it. Mechanic girls like big tools even more than mechanic boys do, we need them more.

Today I remembered that they still hadn’t called me and that this was surprising, considering that a vacuum pump doesn’t take that long. I was a little bit concerned that perhaps this meant that something else was wrong with the vehicle. Oh well, no matter, I don’t really need it until next week.

One of my rental car errands took me down to Sanford, an industrial town 20 miles south of Pittsboro. I was down there to take a look at the community college, and more importantly, the drive, as I’m considering taking some classes next fall. I’m 99% sure that I can’t handle the drive down to Sanford everyday- I don’t have any other reason to ever go to Sanford, the school is on the other side of town meaning I’d have to deal with extra traffic on local roads, and my martial arts school is 40 miles from there, in the opposite direction from Pittsboro. The branch of Central Carolina Community College that’s down in Sanford has an excellent ‘mechanical engineering’ program-that’s mechanical engineering as in machining, boiler and plant maintenance, not as in ‘practicing engineer’. I’m trying to figure out where I’m going to learn machining- and this sounds like actually the perfect school for the skills I want to learn next, but one of the things I hate the most about living here is having to drive 20 miles to get to anything that’s not available in Pittsboro. I don’t think I can handle a drive south, followed by a drive north in the same day for kung fu, so I’m not sure what I’m going to be doing in the fall.

On the way back, it was after work hours, and I didn’t think that Chatham Alignment was going to be open. I kept my eyes peeled for their driveway just in case it looks like someone was working late.

In the driveway was a sheriff car. And police tape. My eyes followed the tape, straight up to the building, and saw- each of the big truck bays boarded up with fresh plywood, topped with big streaks of black smoke damage. The shop that had a serious fire. I screeched the car to a halt and ran in to the driveway, frantically looking for my van. No van. Oh shit. No wonder they didn’t call today.

The sheriff let me through, as Kevin, the owner, was sitting on his truck in the middle of the damage. As I walked around the cop car, the van came into view. I had missed it in my initial panic. Phew! I ran across the yard, hoping that my vehicle was unhurt. Things still looked good.

Kevin, and his other mechanic, didn’t look so good. I spent an hour talking to him about the fire, his business, his life, and every single retarded little problem that the co-op vehicles had ever suffered, most of which he had had to deal with. After he found out that I was associated with biodiesel, he just unloaded all kinds of well-deserved ridicule on my friends’ mechanical skills and general judgement. In his defense, he did warn me that he was about to talk trash right before the flood of stories started.

Oh, and, the van. I am so blessedly lucky.

Turns out the fire had started right after they had left for the day yesterday. Somebody drove by on their way home from work and saw it, and called 911. This is where I get lucky and my charmed life kicks in. ‘They’ turned out to be a construction crew with several men in a truck.

They dove into heroics. They started trying to push vehicles away from the burning building. They only managed to save two of us. They got one of Kevin’s tow trucks, which was unlocked, pushed down the hill away from the building. The other tow truck that was left behind near the front of the building ended up destroyed. (And, unfortunately, Rachel Burton’s lemon of a diesel motorcycle is still inside some corner of the building, completely unhurt)

My van was parked directly in front of one of the burning bays. It was locked at the time. The construction workers saw my California license plates, and realized that I was a customer and prioritized saving my van, over Kevins stuff. Although it was locked and in gear, they had chain or tow rope with them, somehow tied my van to their truck, and dragged it 50 feet away from the fire to safety.

I begged and pleaded with Kevin to tell me who did the saving, as those people deserve several massive cases of beer, or a fruit basket, or something in between.

oh my god, I’m actually crying about this I’m so happy. If this investigation, or something like it, had happened in the 90’s I would’ve gotten proper treatment the first time and wouldn’t still be sick. Perhaps I’ll post an explanation once I recover my senses. (incidentally while the specific IDSA guidelines that are the subject of the attorney general’s investigation are from 2006, the same players involved have been involved in trying to block chronic Lyme treatment for decades)

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Attorney General’s Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America’s (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

“This agreement vindicates my investigation – finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,” Blumenthal said. “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

“The IDSA’s Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines – in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman – expert in medical ethics and conflicts of interest, selected by both the IDSA and my office – will assess the new panel for conflicts of interests and ensure its integrity.”

Blumenthal’s findings include the following:

* The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

* Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

* The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;

* The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus";

* The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

* The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

IDSA has reached an agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel – comprised of individuals without conflicts of interest – will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.

Blumenthal added, “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests – in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies – to exclude divergent medical evidence and opinion. In today’s healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.

“Our investigation was always about the IDSA’s guidelines process – not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.

“This Action Plan – incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence – can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public’s confidence in such critical standards.”

THE GUIDELINE REVIEW PROCESS

Under its agreement with the Attorney General’s Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.

The agreement calls for the ombudsman selected by Blumenthal’s office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.

Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, “Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry.”

To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA’s website. The Attorney General’s Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.

Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.

The panel will then vote on each recommendation in the IDSA’s 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.

Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.

The panel’s final report will be published on the IDSA’s website.

ADDITIONAL FINDINGS OF BLUMENTHAL’S INVESTIGATION

IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal’s office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.

IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time – a violation of IDSA’s conflicts of interest policy.

The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment “Post-Lyme Syndrome” and defined it the same way.

When IDSA learned of the improper links between its panel and the AAN’s panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN’s endorsement to “strengthen” its guidelines’ impact. The AAN panel – particularly members who also served on the IDSA panel – worked equally hard to win AAN’s backing of IDSA’s conclusions.

The two entities sought to portray each other’s guidelines as separate and independent when the facts call into question that contention.

The IDSA subsequently cited AAN’s supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.

In a step that the British Medical Journal deemed “unusual,” the IDSA included in its Lyme guidelines a statement calling them “voluntary” with “the ultimate determination of their application to be made by the physician in light of each patient’s individual circumstances.” In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.

Blumenthal thanked members his office who worked on the investigation – Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General’s Antitrust Department.

To view the entire IDSA agreement, go to the Attorney General’s website.

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284