Topic: Tell them they are wrong- research requested
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OK.
Below is a quote from the latest NEJM article that CAN easily be researched or written up and the data can be used to refute the claims. And this is a claim they keep making that is just plain old stupid.
Would we deny cancer treatment because there may be side effects from the meds? Or deny treatment for TB or HIV infections because of possible side effects?
NO!
Then they need to KNOCK it off and stop making these stupid claims... and we need to counter them.
How many patients have Lyme? How many have these side effects? How many OTHER patients using other drugs die from the drugs or complications of the drugs? How many die from not being treated for their condition?
Whatever you would like to look at and share would help.
They make it sound like a zillion people are at risk of dying or getting serious side effects from antibiotics. This needs to be put into perspective.
But I don't have time or energy and my tincup runneth over with too much Lyme work right now.
Who can address this? It would help the entire Lyme community and future writing efforts if someone could.
THANKS!
Antibiotic therapy can cause considerable harm to patients treated for chronic Lyme disease or post-Lyme disease symptoms.2
Life-threatening anaphylaxis33 and biliary complications requiring cholecystectomy35 have occurred after ceftriaxone administration.
Candidemia from infection of an intravenous catheter has resulted in death.36
In an unpublished study in which 37 patients underwent randomization to receive 10 weeks of treatment with either ceftriaxone or placebo, about one fifth of the patients had serious adverse events, the majority of which were related to intravenous catheters. 37
In light of the risk of serious adverse events in their study, Krupp et al. concluded that ``repeated courses of antibiotic treatment are not indicated for persistent symptoms following Lyme disease, including those related to fatigue and cognitive dysfunction.''33
posted
I'm a nurse, and believe me....EVERYTHING has a "side effect"...breathing has a side effect. These people just need to give us a break. I haven't even been diagnosed with lyme, but I know if that turns out to be what I have, I would certainly rather risk the "side effects" of treatment than picture my life with the symptoms getting worse than they already are! I will be 44 in two days, I can no longer feel safe to practice as a nurse in a career that I love, this is no way to want to continue my life. How dare these people want to take away treatment and hope? (Ok, I'll get off my box now...just in one of those moods I guess...sorry)
posted
They'll probably say the risks far outweighs the benefits.
Now if they could just prove that. Because it clearly appears that many people get their lives back and are able to become contributing members of society again. So now how is it then that the risks outweigh the benefits?
It seems like the IDSA is trying to promote this idea that most people affected by Lyme only have minor issues like joint pain and some fatigue. They don't seem to even recognize the many people who are debilitated by this disease. If it were just simple problems, then maybe we could say that the risks of using long term antibiotics outweigh the benefits.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Maybe we could add some research...like data on how many
People with Lyme have co-infections.
We all know Lyme kills, but so does babesia, bartonella, and others.
Maybe shift the focus a little from "just" Lyme.
I am going to see what I can find.
I want to help.....Up to my ears getting ready for the court case.
I'll keep you posted.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Interesting to look at the Masthead of the NEJM. It explains how this nonsense got published there in the first place.
It is a well-known fact among doctors that since they fired the woman (sorry, forget her name) editor some years ago, the Journal has never been the same.
Kenneth L. Baughman, M.D. Edward J. Benz, Jr., M.D. Robert G. Dluhy, M.D.
Arnold M. Epstein, M.D., M.A. Michael F. Greene, M.D. Mark S.J. Klempner, M.D. J. Thomas LaMont, M.D. Thomas H. Lee, M.D. Allan H. Ropper, M.D.
Anthony Rosenzweig, M.D. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ah, yes! Klempner himself! The guy who has been put in charge of the new biowarfare lab located in the heart of the city of Boston. One of the biowarfare agents to be studied?
LYME, of course!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
One more thing, please.........Klempner reapplied for a patent for Lyme vaccine in 2005, exactly one year before the publication of the infamous IDSA Guidelines.
His rational? *Many are not cured of Lyme and continue to have infection.* That's not a quote...a paraphrase of the wording.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Great! Appreciate any research that can be done!
posted
What I don't understand is why do they need to do any more biowarfare work? Since the agents get out into the population and spread. It's not containable; it's planetary. There's no winning with this strategy; everyone loses. Doesn't make any sense at all.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I'll see what I can find today.
Posts: 339 | From nowhere | Registered: May 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
So by their standards, no one should be treated with IV ABX unless they are in an immediately life-threatening situation where they would die right away without it?
It sounds like the arguement is against the IV Tx not the disease.
How many are Txd & cured?
How often are relapses re-Txd?
Do people who have ports implanted under the skin have the same risks? Might that be a better way to go once it's determined that Oral ABX Tx has failed?
I wish I could look this up. I'll have to try to get back to it. I have a date with a nurse about a Midline Catherization for IV today.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Tincup, I do not have a computer at home but now am visiting my sister so have a little access for a week (in between sweet bombardment from the 5 and 7 year old nephews!)
Is this what you are looking for? A comparison? They had mandated this vaccine in Texas but then it was overturned. Now deaths have been linked.
Remember, I still have lyme, I do not always read or interpret fully.
The other thing is......a comparison is something the IDSA will likely rebut with saying that it is not related because, we are being treated for something that does not exist.
posted
I also think this is a very important piece of the puzzle overall that most doctors do not even think about when handing out SSRI's or other things so freely:
This is the case they refer to. You have heard about Geri from Iowa I am sure. The family and others close to her know what really happened. Call Judy for details. She has the contact info for the family.
Clin Infect Dis. 2000 Oct;31(4):1107-9.
Death from inappropriate therapy for Lyme disease. Patel R, Grogg KL, Edwards WD, Wright AJ, Schwenk NM. Division of Infectious Diseases, Mayo Clinic and Foundation, Rochester, MN 55905, USA. [email protected]
A 30-year-old woman died as a result of a large Candida parapsilosis septic thrombus located on the tip of a Groshong catheter. The catheter had been in place for 28 months for administration of a 27 month course of intravenous cefotaxime for an unsubstantiated diagnosis of chronic Lyme disease.
PMID: 11049799 [PubMed - indexed for MEDLINE]
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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