robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Drs. Wormser, Dattwyler and Nadelman,
You sound very rigid in your approach to medicine. How horrible this has happened to you. You know what you know and there is no room for advancement or change. What a shame.
Your arguments remind me of those who fought against the discovery that Heliobactor Pylori caused ulcers. I wonder what side of the argument you were on in that issue.
For many years the entrenched minds in the medical field thought and fought to prove that ulcers were a result of stress. You are now doing the same with Lyme Disease while many of us sit and suffer.
With research that began in the late 1970's and early 1980's Drs. Marshall and Warren set out to convince the medical world of their discovery that an infectious agent was the cause of ulcers. In October of 2005, after many years of opposition by those entrenched in old beliefs, they received the Nobel Prize.
There is a great parallel here with the lyme disease controversy. I have to wonder why you are so averse to change? Medicine should be an ongoing inquiry. We are far from knowing everything there is to know. Have you ever conducted a study on long term treatment?
Have you talked to patients suffering with chronic lyme? We were out there down the street. Perhaps you could have stopped by and found out first hand what we suffer through.
You state in your letter:
``The IDSA Lyme guidelines also cite numerous studies that have shown that the majority of patients who receive the diagnosis of "chronic Lyme disease" have never in fact had Lyme disease at any point.''
Lyme can become seronegative as it progresses. You know that. And what test are you using that can POSITIVELY EXCLUDE a diagnosis of Lyme Disease? Previously, the CDC stated that Lyme disease is a "clinical diagnosis," supported by lab testing. The new IDSA guidelines have totally turned that thinking around without sufficient evidence.
You further assert:
``In one of these studies, more than 50 percent of the misdiagnosed patients had other treatable medical disorders.''
Lyme is multi systemic and does effect many systems in the body including the immune system, the central nervous system, and the musculosketel system. After my known tick bite my previously healthy-organic-food-eating-athletic body developed various symptoms.
Perfectly healthy before Lyme, falling apart afterwards. Thyroid and other hormone deregulation occurred. Arthritis, neuropathy and myalgia ravaged me. Can these be diagnosed and treated separate from Lyme? Sure they can.
Assuming that these other conditions and symptoms are not related to the Lyme/tick bite is a bad assumption. The body acts as a whole, one part effects the others.
Another disease that attacks the immune function is HIV. As we know, HIV itself cannot be dismissed as part of the root cause of the ensuing illnesses. That kind of limited thinking is simply not logical. Just because a person has Lyme does not mean they do not have other disorders that are diagnosable and treatable.
Also, these other medical conditions can be, and I believe are, brought on by the weakness and imbalance that Lyme creates in the infected body.
Your guidelines are harmful and should be withdrawn.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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bettyg
Unregistered
posted
sorry, but i can't read your response; paragraphs too lengthy; can't follow so giving up.
also i believe someone started a thread about this, and your reply would be appropriate there in one spot vs. scattered all over board.
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I broke it up ........ hope it helps. I did not post in the other thread for my own reasons....... enough said
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Great reply(*)!*)*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Good letter Robi!
I suppose we need to hear from Tincup (Oh Tincup, where are you??) as to whether or not you should send your letter on to Dr. W. (I have a letter waiting in the wings as well).
His address is:
New York Medical College Section of Infectious Diseases Munger Pavilion-Room 245 Westchester Medical Center Valhalla, NY 10595
posted
Very good analogy comparing Lyme research to ulcers. Also, I totally agree that one can have multiple diagnoseable illnesses which may or may not be caused directly or indirectly by Lyme and other tick-borne illnesses.
If you are planning to use this as a letter to the editor, I think it may be too long -- pretty sure that most newspapers limit letters to either 200 or 250 words.
Very good effort.
Did notice one typo -- in the paragraph beginning -- With research that began... -- there discovery should be their discovery.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Bravo, Robi!!!
Very well said.
I agree with Bea that for a letter to the editor it would need to be condensed. If you decide to go that route let me know and I'll be happy to help you cut it down and edit it.
I used to do that for my ex when we were together. I'd much rather do it for you!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Thanks for the woohoos! I used to be able to write something like this quickly ........ now it takes all day.
Bea I fixed the typ-o...good eye.
The ulcer comparison is not mine originally. Dr. Z used it in her defense. I remembered it ..... which for me os almost as good as being the originator.
Yes, LymedNVA I would gladly accept editing help. I want to here from TC as to whether or not I should send this in.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
If I may recommend: Also:
cc: to their bosses (heads of departments?) and to the big guys at the hospital and to the big guys at the medical school (dean, etc). and to the newspaper where the IDSA"party line" article first appeared. They have repeated those words again and again....not too original, and not too deep, either.
why waste a great letter just on the perpetrators (sp?) when you can let the upper echelon know that we know.
And the perpetrators, then will know that the upper echelon is hearing about them, too.
Of course, I assume that with something this controversial, the upper echelon knows exactly what is going on.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
awesome letter. wish I could right tha well.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Kudos for Robi!
This is so well said and said with cool, level responses with no hint of anger or emotional outbursts.
Great job!
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well Sam.. you done good! REAL good!
I like the focus on medical facts rather than emotion.. even though we would all like to run him through the ringer a time or two.
Shows a lot of passion and so much education! Actually... I didn't know you were this smart! I'm impresssed!
And the effort must have take a long while. I see a good deal of research too.. and carefully worded phrases.
Yes, Sam... I think we can publish this one.. no problem.
But I am not sure we should call you Samuel Clements anymore. You have risen to bigger and better things with this work of art.
Why don't we call you ... Mark Twain?
Good job my friend!!! And THANK YOU for taking your precious time to do it!
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Wow, that's fantastic, Robi!
Well done!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Yeah, thanks TB ..... I know, I think I musta channeled someone else while writing this. Maybe I am channeling TC ..... that's one explanation.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I, as a matter of fact, I happen to be related to Samuel Clements (for real, yes.....Mark Twain)and in my humble opnion, that is one excellent letter. GREAT JOB!!!!!!!!!!!!!!
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cordor said.. "I happen to be related to Samuel Clements (for real, yes.....Mark Twain) and in my humble opnion, that is one excellent letter. GREAT JOB!!!!!!!!!!!!!!"
Now I've been known to pull a leg or two here and there for fun.. but is this true?
Thank you so much for your calm, intelligent clarity!
wiserforit Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by robi: Yeah, thanks TB ..... I know, I think I musta channeled someone else while writing this. Maybe I am channeling TC ..... that's one explanation.
robi
Nah, I think you're just this good!
When I grow up I want to be like you and TC.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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quote:Originally posted by trueblue: [QUOTE]Originally posted by robi: [qb] When I grow up I want to be like you and TC.
OK, let's face it trueblue....It ain't happenin'!! The part about you growing up!!
Good job, robi!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Go on with your bad self, Robi!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Lymetoo: OK, let's face it trueblue....It ain't happenin'!! The part about you growing up!!
*looks around* Is my peter pan complex showing?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
robi, thanks so much for breaking it up for me/others.
w o w !! terrific letter in hitting so many important points; great job robi; proud of you nailing it so well for us all.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
You've inspired me. I'm working on a letter, but it pales incomparison to yours!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Wow..great letter!!! Posts: 8 | From USA | Registered: Jan 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Bravo Robi!
I must reiterate: When they develop something safer & more efficacious, then there's something to discuss. Until then, this is all we have & they have nothing better/safer to offer.
I'd also like to know what they would do if they or a loved one had lyme, was treated, ruled out all other conditions, & their sxs persisted? Concurrently, their life savings evaporated as they fought for disability.
Would the guidlines still apply...
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've heard from several others that this letter is very good! And much needed.
posted
Hey, I'd rather be called a goofball than a baboon!!! Posts: 867 | From PA | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Lymetoo:
quote:Originally posted by Tincup: And you goof balls make me laugh!
Trueblue is the goofball....not MEEEEE!
true and blue
Hey, a little seriousity on Robi's thread; if you will!!!
She's brilliant she might not want to hang around with us umm... um... slightly dim bulbs.
edited to add: Ya got a point there, TTPH!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Great letter! I am so terrible at writing at the moment, but a thought occurred to me for anyone who could write about it as another Wormser rebuttal.
I have often heard of Lyme in it's spherocete (sp?) form as very much like that of Syphilis. For those with early syphilis, immediate treatment with antibiotics can "cure" it as far as I know.
Symptoms of early syph usually includes a chancre sore or other problems in the genital area (which gets one's attention pretty quickly I would imagine.
There is a quick and accurate test for Syph. which (excuse me dear male Lymies) was probably invented by a man...."not on MY peepee!"
However, lets just say for the sake of argument that the early symptoms are ignored and a person has no more symptoms.
So a person goes on with their lives until BAM they begin getting worse symptoms many years later. Would doctors say they had Post Syphilis SYNDROME?
Again, no treatment allowed because there is NO SUCH THING as Post Syphilis Syndrome. So, person limps through a couple more years until, BAM, insanity and death.
I think the allegory here is important. But I can't write well enough to send any letter to an editor or to the ducks in NY. Anyone willing to think this out and write something that makes sense?
I promise that after long-term ABX TX and getting some of my brain back that I will do more writing myself.
Just throwing this out there and see who "catches" it.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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quote:Originally posted by TNJanet: So a person goes on with their lives until BAM they begin getting worse symptoms many years later. Would doctors say they had Post Syphilis SYNDROME?
Again, no treatment allowed because there is NO SUCH THING as Post Syphilis Syndrome. So, person limps through a couple more years until, BAM, insanity and death.
You got it!!
True....I'm just keeping her post "UP THERE!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
What about Post legionnaires disease or post TB which may require a patient to be on multiple lt abx?
No chasm between MDs about the lt treatment of these infectious diseases.
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Hey, a little seriousity on Robi's thread; if you will!!!
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