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Lyme Wars: Patients to Protest, Blumenthal to Investigate IDSA Lyme Guidelines

by: CTPatriot

Wed Nov 29, 2006 at 05:08:10 AM EST


New Page 1
Recently updated guidelines from the Infectious Disease Society of America (IDSA), The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis  have ignited a firestorm among patients who suffer from chronic Lyme disease and the doctors who treat them. Their outrage is due to new language from the IDSA which literally defines chronic Lyme disease out of existence despite the wealth of peer reviewed scientific research which disagrees with that conclusion:

"There (have) been 18,000 papers published on lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."

"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''

Unlike patients and their doctors, the insurance industry is celebrating the updated guidelines:
Because of the prestige the infectious disease society carries, lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.
It should come as no surprise that many of the university based researchers who have long supported such restrictive guidelines, also moonlight as highly paid insurance consultants and expert witnesses (consulting fees run several hundred dollars an hour) who testify against chronic Lyme patients. One has to wonder what role such conflicts of interest may have played in the development of these new guidelines.
 
Someone very important DID wonder just that. Connecticut Attorney General, Richard Blumenthal, has launched an antitrust investigation against the IDSA last week in order to examine potential bias and monopolistic practices in the creation of IDSA's guidelines. Additionally, the International Lyme and Associated Diseases Society (ILADS), a medical society representing doctors and researchers who specialize in chronic Lyme disease and which has published far more comprehensive guidelines, filed a written demand that the IDSA retract their guidelines.
 
Lyme disease patients and activists have also taken action, organizing a protest for 11am this Thursday (Nov. 30th) outside Westchester Medical Center in Valhalla, NY, home to lead author of the IDSA Guidelines, Gary Wormser. At last count, 175 patients and their supporters from all over the US planned to attend.
 
At 7pm, also on Thursday Nov. 30th, there will be a fundraiser and partial screening of "Under Our Skin", an in-process documentary that delves into the devastating effects of chronic Lyme disease as well as the political war being waged against the doctors who treat them. The fundraiser will be held at the public library in Wilton, Connecticut. Representatives from the movie's award winning production company, Open Eye Pictures, based in CA, are expected to attend.
 
Details for both events are included below the fold.
CTPatriot :: Lyme Wars: Patients to Protest, Blumenthal to Investigate IDSA Lyme Guidelines
 
 

 
Reference Material:

 
 

TAKE A STAND AGAINST THE

 

IDSA NEW Lyme Disease Guidelines /

Dr. Gary Wormser (lead author) @ Westchester Medical Center

 

Thursday November 30th  12 - 3 PM

Westchester Medical Center (South  entrance) ~ Valhalla, NY

(No parking at protest site - shuttle bus location, comfort inn, hawthorne ny)

 

new IDSA guidelines:

  guarantee people will not be diagnosed & treated in time

  empower insurance companies to deny treatment coverage

  threaten your physician’s ability to treat

 

Need everyone there by noon! - Shuttle Bus to start at 11am 

For Important Information

Go to Lymenews.org for directions, hotel info, bus routes, shuttle bus service to protest site.

Please RSVP to ensure enough parking spaces – bring food & water, umbrellas, chairs, signs

 

questions please contact Lia at lmmccabe@hvc.rr.com  or (914) 474-2679 Lyme Rights

 
 
 
 

 
A Documentary Work-in-Progress Screening and Fundraiser
 

In this upcoming documentary, Open Eye Pictures reveals the shocking truth about Lyme disease, a silent epidemic destroying countless lives.

Come see a 35-minute work-in-progress sample clip, and be part of this groundbreaking effort. Donations are tax-deductible.

 

For more information visit:

www.LymeDiseaseFilm.com  

What:     Film Screening & Fundraiser

When:     Thursday, November 30, 2006

Time:     7-8:30 pm

Where: Wilton Library

137 Old Ridgefield Rd Wilton

Other: Wine & cheese, hors d’oeuvres &

Raffle prizes!

Please RSVP: Dburn14@hotmail.com     

 
 

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Thanks for this! (4.00 / 1)
Am thinking of attending . . .

You're Welcome (4.00 / 1)
I figured with Lyme at epidemic proportions in the state that others on MLN besides me might be interested. Glad to know there was at least one :-)

I'm not making it to the protest, but plan to be at the fundraiser.


[ Parent ]
All the more reason to nationalize health care (4.00 / 2)
There will never be meaningful health care reform as long as there is a profit motive.  Access to health care should be a right, not a privilege.  Babesiosis damn near killed my mother-in-law a few years ago because they had no idea what it was they were looking for.  These diseases are no joke and I applaud Blumenthal for looking in to this.

I've heard quite a bit (4.00 / 2)
about this movie from a Lyme Disease board I subscribe to.. I can't tell you how many people I've met that suffer so, only to be misdiagnosed and then sent for treatment years later. My neighbor is one of them, shes currently on Doxy via IV for 28 days, ten years after she developed mysterious symptoms, and was told it's all in her head.

she uses a cane now, and a walker on some days to get around.

People need to wake up about Tick-Bourne Infections.

.Adding Another Dimension of Vituperation Toxicity to Blogging since 1999!.


Bulls**t, Gary Wormser (4.00 / 2)
Thanks for the articles and links, CTPatriot.

I have had lyme disease four times. First two times, I went into Stage 3 without a rash. Luckily, both times it was arthritic instead of heart or nervous system. I felt like I had been sleeping on concrete with every bone in my body aching and not having the energy to even get dressed. The 28 day antibiotic treatments cleared it up both times. Third time, I had the rash and was sent for a biopsy that confirmed it was Lyme. Fourth and last time, my doctor was not positive that I had been "reinfected" similar to the first three times. He is not quite ready to call it chronic lyme yet although I recently had a problem with one eye. The eye specialist said the problem was from lyme disease and it was treated and went away. My joints ache a lot and I have many days without any energy. 
I am a gardener whose yard is overrun with deer and have tried everything to discourage them. I have had it and plan on having every shrub and arborvitae removed from my yard. I am also beginning to suspect that I could be picking up the ticks from my firewood. I move the pile to a side porch in the winter and find field mice nesting there. All my dogs receive the lyme disease vaccination. I am doing okay. I understand and feel for the others who are not though.
Mr. WORMser's last name says it all.


Ticks (4.00 / 1)
Sorry to hear of your problems caused by the ticks.

After being outside in an area that is likely to harbour ticks, go take a show and examine yourself.  A few years ago, upon returning from playing golf I went to immediately take a shower rather than first relax with a cold beer.  When I took off my socks there was a tick burrowing into my leg just above my ankle.

As a precaution, wear long sleeve shirts and do not wear shorts when gardening or hiking in the woods.  (I was wearing slacks and mid-calf length socks when the tick decided to lunch on my leg.  How he got in there is a puzzle to me.) 

Maybe the deer population needs to be drastically reduced to cut down on incidents of lyme and severe car accidents.  Let the hunters shoot the deer and increase the limit (whatever they call it) as long as a specified per centage of the meat has to be donated to a social service agency to help feed the hungry. 


[ Parent ]
I disagree.. (4.00 / 3)
Maybe the deer population needs to be drastically reduced to cut down on incidents of lyme Small mammals,  including cats and dogs can also be carriers.  and as for taking a shower, sure it will help, but immature deer ticks can be very small, about the size of the head of a pin. They may not necessarily be visible if they're in a hard to reach place (scalp for example).

I've had Lyme three times that I know of.. one time I didn't get a traditional bulls eye and my doctor told me it was an allergy that I had suddenly developed. All I can say is, I'm glad I don't need a referral to see a specialist (in this case, a lyme literate rheumatologist)

The medical profession needs to open their eyes to this epidemic, and start treating it seriously. THAT'S what we need, not a deer massacre.



.Adding Another Dimension of Vituperation Toxicity to Blogging since 1999!.


[ Parent ]
I think mice and rodents carry it frequently (4.00 / 2)
An arborist I know who also did tick treatments said that ground cover like pachysandra is a typical "deer" tick hideout and mice, rodents are really more the problem than deer.  The name may be a bit of a misnomer.

Some people who treat for ticks also do before and after "tick drags", which are kind of like dragging a sheet or piece of fabric around and counting how many ticks are found on it to get an idea of where the problem populations are.

Firewood sounds like a good possibility.  Also, does treating a pet just keep the insect from burrowing in that pat? I mean, can it still come inside in the animal's fur and just be prone to climb off rather and find a non-repellanted warm body?

This whole subject is a really really good area for grassroots political action IMHO -- the Wormser green eye shade recommendations have a KATRINA like quality to them, and the suffering that is private and hidden from view needs to be made visible and public, where real people and not cold statistics bear witness to this disease.

I will call this info to the attention of my favorite CT state legislators.


[ Parent ]
Of Mice and Men (and Deer) (4.00 / 2)
You're right about the mice being the bigger part of the problem. They are actually one of the primary reservoirs of the Lyme infection. Deer, on the other hand, are one of the mammals needed to complete the life cycle of the tick.

Ticks go through 3 life cycles - larvae, nymph and adult. Both the larvae and nymphs tend to seek out smaller creatures like mice and birds for their meals. It is during those meals that the ticks acquire various infective agents, like the bacteria that causes Lyme disease. Erlichiosis, Babesiosis and Bartonella are other infections commonly harbored by ticks in Connecticut, and can all cause disease in humans.

The adult stage is the one that feeds on deer and other large animals, and lays eggs to start the cycle all over again. Getting rid of the deer may cut down on the number of ticks, but cannot eliminate them entirely, as there are plenty of other viable hosts for the adult stage.

As far as the dog vaccine, it doesn't prevent attachment, it just stimulates antibody production to hopefully combat the Lyme bacteria as soon as it enters the dog's bloodstream. Vaccine or no, outdoor pets can easily carry unattached ticks inside which then find their way onto the human companions. Tick checks are definitely important if you have pets that go outdoors.

There's been a pretty fair amount of grassroots action by the Lyme community, but any help is appreciated. You wouldn't believe the nasty politics behind this illness. I'll be writing about that and posting it here in the near future.


[ Parent ]
Changes (4.00 / 1)
I had my yard treated the first time this year for ticks with three applications of Tempo (a Pyrethroid insecticide, EPA Reg No. 3125-498). The company even goes twenty feet into the woods surrounding my property. This is the first year ever that my dogs and I did not get ticks since moving here twenty years ago. The lyme disease vaccination that the dogs receive only kills the virus if it enters their system and does not kill the tick. (I lost a five year old male dog about eight years ago that had a bad reaction to it). Being always an organic gardener, it was extremely difficult for me to have this chemical sprayed on the yard. I use to grow over seventy types of herbs plus a vegetable garden but have not been able to the past three years. I've watched with sadness, nature take over and being unable to weed or plant because of my lack of energy. This is increasing the tick areas so my reason for having everything removed including shrubs. I have also started wearing gloves when handling firewood.
If you can't tell, I have finally declared war. I have six bird feeders going right now. Last year while filling one feeder, I got a tick deer on my hand that must have been left by one of the birds. I hate the thought of removing the feeders. I don't even live in the country but a major urban area. There is so much wildlife crammed into the small amount of woods left in this area. Gardening and dog rescue are two huge parts of my life but I looked at a condo for the first time this year. For my own health and safety, I have to change something. I don't want to be afraid to go out into my own yard. So I am completely changing the landscape and will give it a couple of years.
I am just one small voice and have not really shared my story publicly. I met a man in a wheel chair a block from my house during his family's yard sale. He mentioned that he had problems with lyme disease. I am aware of some children in my neighborhood that have lyme disease problems. It is a very SERIOUS problem.

[ Parent ]
an ally in your quest for info and help (4.00 / 1)
MIssy's Brother, my heart goes out to you.  So much about how you live your life is being altered by what's happening on your property and physically due to Lyme and the ticks.

Do you know, or know of, Kirby Stafford at the CT Ag Experiment Station?  Personally, I ADORE the Ag Station and appreciate so much the work it does.  It did a lot of research on West Nile treatments a few years ago and is also very involved on the ticks/Lyme disease front.

I suggest you first try to look at his tick manual online (if it's still there?), and do not hesitate to give him a call or email him.  The scientists at CAES that I've talked to are friendly, very thoughtful and helpful, and there is no charge for their advice.

Perhaps Stafford's experience can help you get a handle on what's happening in your area and on your property, and his knowing about your situation may let him make constructive use of it as Exhibit A as he goes to bat for things you will want to support.

Here's a link to his contact info. You will see the Tick Management manual described below, and it says it's on the CAES website, as well.  I can't find it, but I bet if you ask, Stafford will send it as an attachment if it's no longer on the site.

You may have reviewed it long ago, but if not, I thought it was the most thoroughly done piece I had seen to date.

http://www.caes.stat...

My best to you. Take courage.


[ Parent ]
Thanks Greenpeas! (0.00 / 0)
but I am doing okay really. I still have some rare days that I feel like a bull and could pull a tree up with my bare hands. There are so many others worst off than I am and this WORMser fellow and the insurance companies behind him piss me off.

I just sent an email to Mr. Stafford. I am familiar with the CT Experimental Station in Windsor as they helped me with an apple tree problem years ago. I googled some of Stafford's publications which led me to many links. If I come across a new item or something very interesting, I will post it here for others.

It would be great if we could help get Nolopro's neighbor to throw away her cane and my neighbor up out of his wheel chair. How much proof does WORMser and the others need that lyme disease is not a temporary condition, such as a cold, that will soon pass?


[ Parent ]
There is something very, very wrong (0.00 / 0)
When people like you are turning their lives upside down to find answers and make things work due to ticks and Lyme, while people like Wormser are spending their time....energetically turning your life upside down pretending that everything you're doing just doesn't really exist.

Did anybody go to the Westchester County event?


[ Parent ]
Protest Report Now Posted... (0.00 / 0)
...at the following link: http://www.myleftnut...

[ Parent ]
Thanks Snap (4.00 / 1)
I ALWAYS shower after coming back inside. In fact, I also leave my clothes out on a side porch and then later they go directly into the washing machine. I look like an Amish farmer while outside with long sleeves and a huge brim hat. Showering immediately after coming back inside does not necessarily remove a tick as I have found in my case(s). And yes, I use a wash cloth rubbing hard.
I have mixed feeling regarding deer. If someone removes one strictly to feed their family then it's okay. I would hate for deer to be killed though strictly to thin out their population.

[ Parent ]
WORMser (4.00 / 2)
The names I have for WORMser can't be printed :-)

[ Parent ]
Couldn't you hear (0.00 / 0)
me mumbling other names behind my typing?

[ Parent ]
Dr. Stafford replies (0.00 / 0)
Your observation about the wildlife crammed into a small space as one of the factors that may increase ticks and infection rates has been supported by a number of studies. There is evidence that small wooden tracts as a result of forest fragmentation may intensify the transmission process. Certainly many islands and other geographically isolated tracts that have very high deer and rodent populations have correspondingly high tick populations. I have observed this in many places. There is also anecdotal evidence that bird feeders at the woodland edge, but not necessarily by the house, can increase tick numbers. The ticks feed on some many different hosts. However, deer are a key host for adult ticks. Deer reduction and exclusion studies have shown significant reductions in tick populations. The elimination of deer on Monhegan Island in Maine has resulted in a crash in the tick population and few can now be found. However, this approach has been controversial and difficult to apply in most areas.

It sounds like you had or have taken many of the possible steps possible to reduce ticks in your residential environment, but have been unable to keep them up. If you have not yet read it, my tick management handbook is available on the Experiment Station’s website (www.caes.state.ct.us) under publications. I am not sure what else to suggest. Lyme disease is an ongoing problem for which less attention seems to given lately. Funding for research has declined. As you saw, insecticides and landscape measures, can effectively impact tick abundance on a property. Landscape changes take time. Chemical insecticides are one of the most effective tools, as you saw, for temporarily suppressing tick abundance, but not everyone wants to use them. Part of my current research is on the use of an insect fungus as an alternative to chemicals for tick control in the residential environment. The fungus kills ticks, but field rates still have to be evaluated and it is not yet available commercially. It should be in another year or so (2008), which could be a boon for organic landcare programs.

 


CAES is a leader in this fungus research (0.00 / 0)
Beauvaria bassiana is one of I think two or three fungi that have been experimented with.  They occur normally, but the current product is licensed only for some other insect applications. A company in CT is developing this biological control, which is currently licensed as a pesticide to be applied for other insect control

Thanks for passing along the info about the ticks.  Sounds like even if the rodents are common carriers, the deer population is a key factor.  I recently read about a culling method that seemed not to create the big increase in live births in the following season (which sometimes happens with culling programs - the deer produce e.g. triplets in ensuing years).

Another institution that has done some studies on deer tick populations is Institute for Ecosystem Studies in Millbrook, NY (Not too far over the CT border).

Here's a link to a study they did linking tick populations to high acorn production, probably attracting the deer to the food:  http://links.jstor.o...

Although you may not want to read all the scientific details, the summary paragraph gives you a clue what the scientist found.


[ Parent ]
Lyme, Erlichiosis and more (0.00 / 0)
It's time to realize that we cannot admire wildlife and welcome them at our back door. Distance, and protection is called for. Most new epidemics of infectious disease are predicted to come from wildlife. HIV is a great example, having crossed from the wild monkeys in Africa to the population there, and beyond. The dramatic rise in the incidence of lyme and erlichiosis is another example. The rise in deer populations is no coincidence - and it is not due to "habitat crowding". It is due to our manipualtion of wildlife - we plant non-native invasive species that feed the deer during the early spring, and this promotes twin births, almost unheard of until the last 20 years. No longer do approximately 50% have spontaneous abortions due to nutritional competition - now the majority have at least 1 birth, and many 2, each year. We feed them, we protect them, we have removed their natural predators. Luckily, where I live we have a booming population of red fox to keep the rodent population somewhat under control, but still it is not enough. My backyard, all 2.5 acres is fenced for deer. I am uncomfortable enjoying my garden or my pool due to the frequency of deer ticks that I come in contact with. Worse, I have 4 children, 2 of which have had lyme. I am concerned, and vigilant, but using prophylactic measures just doesn't work well enough.
Where I live, deer hunting is allowed, and I do all I can to encourage hunting on, or nearby my property. It's gotten so bad, and the deer are so brazen, I swear I could kill one with my bare hands. To hell with you, animal activists - the deer have become just rats with long legs. There is no reason to "protect" a species that is reproducing out of control.

 
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