This is topic Lyme Doctors & Labs Targeted -- Again in forum Medical Questions at LymeNet Flash.


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Posted by notime2work (Member # 6092) on :
 
I received a copy of this forwarded to me by a contact in Kansas City. I have received permission from the originator to re-publish this to lyme-related groups, but I am not affiliated with this group. It appears that our doctors are under continual attack, and need our unconditional support.

Dear Members and Friends of the Lyme Association of Greater Kansas City,

The right to receive treatment for Lyme disease in the majority of states is being threatened, and we need to take action. If you live in a "non-endemic" state and have Lyme or a Lyme-like illness or know someone infected in a "non-endemic" state, please send an email message to Dr. David Dennis at [email protected] and tell him that people are getting infected after tick bites, develop serious consequences, and respond to antibiotics. (You don't have to say people get cured, just that there is a Herxheimer reaction and people do improve with antibiotics). Please tell him your story. He doesn't believe that Lyme exists in most states or that STARI is a bacterial infection. We need to convince him that Lyme and STARI are serious and that people need antibiotic treatmment. He has asked for doctors to get their state medical boards to prevent doctors from treating Lyme in non-endemic states and to prevent them from treating STARI. Please forward this message to other support groups and chat groups that you know. (Doctors should probably not respond to this message, as they may become targeted by Dr. Dennis.) Do not name any doctors in your message.

Dr. David Dennis is not an MD but is an epidemiologist in Colorado who used to work for the CDC there until he retired in 2003. He has stated in a letter to the editor in a recent issue of Clinical Infectious Diseases (2006:42, p.307, Jan.15) that "True Lyme disease cases cluster in 20 or so states in the northeastern, mid-Atlantic, upper midwestern and Pacific coastal regions; Lyme disease reported from states outside these regions is likely the result of exposures elsewhere or misdiagnosis. Without supporting scientific evidence, some medical professionals have promulgated the notion that Lyme disease exists throughout the United States, and that even those cases lacking evidence of complicated infection may sometimes require prolonged and intravenously administered courses of antibiotics in their treatment. To protect patients, governmental agencies should be encouraged to aggressively investigate and regulate laboratories and clinical practices that ignore accepted scientific standards in the diagnosis and management of Lyme disease and STARI." If Igenex and Bowen labs are restricted, many Lyme patients may never get diagnosed or treated. If doctors are not allowed to prescribe antibiotics, many more patients will become disabled and die, and new doctors will not want to take Lyme or STARI patients in these states. Dr. Dennis also said, "There is no evidence that antibiotics have any therapeutic effect on STARI. Such a conclusion could only be made after analyzing placebo-controlled trials." He thinks that, if people feel better with antibiotics, it's the placebo effect. Placebo-controlled research has not been conducted, but there is also no proof for his assumption that antibiotics are not effective.

In the Feb. 15 issue, p. 581, Dr. Dennis wrote another letter to the editor and said STARI is "A benign, self-limited, nonbacterial illness," which implies that it is mild and goes away without treatment. He also says that the definition of Lyme disease needs to be further restricted to establish "more rigorous inclusion criteria for patients who present with erythema migrans-like lesions in areas where Lyme disease is not endemic." He does not believe the rash in these states should be used as part of criteria for diagnosing Lyme disease.

His words may cause doctors to stop treating Lyme and STARI and cause those who do to lose their licenses. He specifically mentioned STARI in Missouri, so Missouri doctors may be at greatest risk of losing their licenses. If we have no doctors to give us the antibiotics we need, a lot more people will die from Lyme or STARI in the next few years. Antibiotics are enabling children to go back to school and adults to get out of bed, and many even get well enough to go back to work. Without antibiotics, many more of us would be bedridden with intense pain and intense fatigue, and many of us would be insane. Antibiotics do a great job of clearing up the cognitive and psychiatric symptoms. Lyme and STARI are like syphilis. All 3 diseases have an early and a late stage; they are all caused by closely-related spirochetes (spiral-shaped bacteria); and they all have the same symptoms, except that the syphilis rash is different. Untreated, all these diseases can lead to arthritis, neurological disorders, blindness, and insanity.

STARI is testing positive to Borrelia burgdorferi at Igenex and Bowen labs and sometimes other labs. It may be a variation of Lyme, but we need more proof. We do know that patients improve with antibiotic treatment and need to be treated. Some people seem to get along fine after the early stage even without treatment, but there is no way to prove that they are cured rather than in remission, with the disease lying dormant and waiting to attack months or years later, when a person's immune system is suppressed by an accident, injury, illness, surgery, or emotional trauma. These events often bring out the disease.

Please write to Dr. Dennis if you got Lyme in a "non-endemic" state. Tell him if you recall a tick bite, what state you were in, whether you got a rash or illness, how severe the illness became, and how you respond to antibiotics. Please make your letter polite but convincing. You may also want to ask him to write a letter of apology to the journal for all the patients who will suffer if doctors follow his advice. He needs to recant his previous statements.

Let's bombard Dr. Dennis's email box with letters. Let's convince him that Lyme is all over the country, STARI is a serious illness, and that we are helped by antibiotics. Let's hope (and pray) that he will learn from our letters and write a letter of apology in a future issue of the journal.

Lyme Association of Greater Kansas City, Inc.
 
Posted by lou (Member # 81) on :
 
I personally believed, and this thread has convinced me, that David Dennis is unsalvageable. If they want to contact him and think it will do any good, well..... I would like to think so, but have my doubts.

He is a liar from the get-go and is apparently going to keep saying this forever, whether he is working for the CDC or retired. Who is he working for now, I wonder? These words about lyme will probably injure any number of people.

If anyone does contact him, please only do this when you can say your piece rationally. That camp tends to use any communications from us, against us. So, any threats or uncivil words will be used to show that we are nutcases, which is also one of their favorite ploys.
 
Posted by NP40 (Member # 6711) on :
 
While I agree that we'll never change Dr. Dennis's attitude, I believe it's imperative that he is contacted and challenged. Not challenging him or "calling him on the carpet" only emboldens Dennis and those of his ilk.

His hypothesis is irrational at best and idiotic at worse. Does he really believe that ticks stop at some imaginery state border ? A child knows better than this yet here's a man that worked at the CDC spreading such nonsense.

We have to let these people know that their lies and manipulations will no longer go unchallenged. Essentially, Dennis was preaching to the choir by publishing his article in the Clinical Infectious Disease periodical. However, this just furthers the vitriol to which seriously ill people are exposed to by those in this particular field.

At the very least, he admitted that at least some states are endemic. This is something even those of his ilk would not have admitted just a few short years ago. No doubt, pressure brought to bear by support groups, legislators, etc. has had a profound effect. This is no time to give this man a free pass, but to challenge such a flawed report.
 
Posted by timaca (Member # 6911) on :
 
What an opportunity this presents!!

Make I offer some suggestions?

1) Send your letter not only to Dr. David Dennis, but also to the editor of the Clinical Infectious Disease Journal. (Can someone please give us an address for that?)

2) Send your letter also to your local or state ID doctor. (We might as well make them all aware).

3) Send letters to Dr. Dennis's BOSS. I'll see if I can't get an address for that. I believe he is currently employed at University of Colorado...don't know which one, but I'll do some digging.

4) Can someone please post the article(s) if at all possible?? It is important that we are POLITE and ACCURATE in what we say.

I see this as a wonderful opportunity to educate our local ID doctors, as well as Dr. Dennis.

As it has been said before LET'S ROLL!! [Wink]
 
Posted by hiker53 (Member # 6046) on :
 
Even if Lyme was only endemic in a few states(which of course, it is in many states), why wouldn't a doctor from the CDC consider the fact that ticks might hitch a ride on a person or animal and cross state lines bringing it to that state and spreading it?

Does M.D. stand for medically dumb? Hiker
 
Posted by timaca (Member # 6911) on :
 
To add to Hiker's thoughts....

or a person could travel to an endemic area, then find himself back home in his non-endemic state with lyme disease...surrounded by doctors who don't have a clue as to what is going on.

In my case...I live in a non-endemic area (the "It's a dry heat" state)...and I am certain I got lyme disease here.

I'll have fun writing my letter. [Big Grin]
 
Posted by Boomerang (Member # 7979) on :
 
This is the most ridiculous thing I've ever read. What the heck does that doctor think is going on?

Yes yes yes, send letters to Dr. Dennis.......but more importantly, send letters to your Congressmen and Senators. Heck, email the President. We cannot allow these doctors to continue to get away with this BS.

That will be more effective. Tell them if they don't do something about treatment for STARI or Lyme, they will NOT get your vote.

And the attack on these Labs? That is just senseless to me.

Ask those Senators if they think the word doesn't get out, with the new media of today and the internet.

Deer cross state lines, and so should our opinions.
 
Posted by bettyg (Member # 6147) on :
 
to the poster of this, please edit/PENCIL icon so you have shorter paragraphs of 6-8 lines of text and DOUBLE space between them.

Several of these go on forever, and I as one of many chronic lymies of 35 yrs. can't read/comprehend these things. Thanks for your consideration.
 
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