This is topic on yahoo home page long term Abx won't help in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/48572

Posted by fatigued15 (Member # 6437) on :
 
How sad is this? We need to respond and comment to yahoo.


http://news.yahoo.com/s/hsn/20061022/hl_hsn/longtermantibioticswontfightlymedisease

LONG-TERM ANTIBIOTICS WON'T FIGHT LYME DISEASE

SUNDAY, Oct. 22 (HealthDay News) -- Long-term antibiotic treatment of people with Lyme disease has not proven to be effective, and use of the drugs for more than four weeks may even be dangerous, according to new expert guidelines.


The updated Lyme disease diagnosis and treatment guidelines were released by the Infectious Diseases Society of America (IDSA).


The guidelines also note that 95 percent of cases of Lyme disease are cured within 10 to 28 days of treatment with oral antibiotics.


Major changes in the guidelines, originally published in 2002, include:

The addition of information on human granulocytic anaplasmosis (HGA) and babesiosis, two diseases transmitted by the same tick that transmits Lyme disease.
Recommendations of a single dose of the antibiotic doxycycline for certain high-risk people who've been bitten by a tick by don't have symptoms of Lyme disease.
More information about so-called "chronic" or post-Lyme syndromes. This refers to patients who report a variety of non-specific symptoms -- such as generalized pain, joint pain, or fatigue -- after they've been appropriately treated with antibiotics.

The updated guidelines are expected to be available shortly on the IDSA Web site at http://www.idsociety.org and to be published in the Nov. 1 issue of the journal Clinical Infectious Diseases.


"We worked to make the guidelines as comprehensive as possible based on a thorough review of all credible scientific literature," lead author Dr. Gary P. Wormser, chief of the division of infectious diseases and vice chairman of the department of medicine at New York Medical College, said in a prepared statement. Wormser was chair of the expert panel that developed the updated guidelines.


Lyme disease is transmitted by the black-legged deer tick. The disease has been reported across the United States, but the majority of cases occur in the mid-Atlantic and Northeast states.


More information


The American Academy of Family Physicians has more about Lyme disease.
 
Posted by ldfighter (Member # 9405) on :
 
This is from HealthDay News, and is running in multiple media outlets. The original article on HealthDay's website contains the following additional info:

- An IDSA press release about the new guidelines is the ONLY source listed for the article.

- The reporter is Robert Preidt

- Email address is: [email protected]

Let's all write and tell them about LDA's response to the IDSA guidelines, as well as the existence of ILADS guidelines and two standards of care.

Yahoo says this:

Yahoo! News does not write or edit any of the news on our site. If you have comments about the tone, angle, accuracy, or coverage of a story, please address them to the news provider directly.

But there is a general yahoo news feedback form here:
http://add.yahoo.com/fast/help/us/news/cgi_newshelp (Right now yahoo has it under "featured news"!)

Also, you can rate the article on yahoo.

[ 23. October 2006, 11:03 AM: Message edited by: ldfighter ]
 
Posted by DocLand (Member # 7794) on :
 
Horribly biased towards the IDSA guidlines. My husband and I both are wrtting responses to Yahoo.
Kristie
 
Posted by Lymetoo (Member # 743) on :
 
What do we click on???

"recommend story"???????????????
 
Posted by WildCondor (Member # 434) on :
 
It is right on the front page of Yahoo. Lovely!
Yahoo is now spreading the mis-information to millions. It's up to us to put the correct information out there in the same fashion.
Time to react and ACT!
 
Posted by ldfighter (Member # 9405) on :
 
Under "recommend this story," giving it 1 star = "not at all." Let's at least get the rating down from 3 1/2 stars!
 
Posted by 8man12 (Member # 7664) on :
 
It was on are local news late tonight.The doctor said we are killing areselves,and createing resistent strains of disease.If its cured how can we be makeing treatment resistent strains of anything.He said there is a need to push to get these people who have been on long term antibiotics,off of them.

I think the day i thought would always come,finally did.It is sad.
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by ldfighter:
Under "recommend this story," giving it 1 star = "not at all." Let's at least get the rating down from 3 1/2 stars!

OK...I was afraid to click on "recommend story!"

You're oh, so right, 8man!
 
Posted by bettyg (Member # 6147) on :
 
I just rated it NOT AT ALL; hit the button time after time; used refreshed; showed ONE vote only after doing this 20 times to know their 4.5 rating down to 0 or 1 !!! [rant] [cussing]

95% can be CURED my butt!

I'll send my email tomorrow after I've had a chance to think about this more! disgusting!
Bettyg [cussing]
 
Posted by imanurse (Member # 7022) on :
 
I checked ILADS website and there is not a PR about the IDSA guidelines yet. Hopefully coming soon.... (hint, hint)

If you are going to respond to the yahoo site, I suggest that you could put the link to the LDA www.lymediseaseassociation.org

and here is also the link to the better guidelines at the ILADS website: http://www.ilads.org/guidelines.html
 
Posted by 8man12 (Member # 7664) on :
 
it was on are local tv news,,i bet finding a doctor will be rough now.

And i see it has been on a few more tv news channels.
http://www.kold.com/global/story.asp?s=5572534
 
Posted by Robin123 (Member # 9197) on :
 
Everyone, respond to Yahoo and the Healthday site and let them know just what you think about those new I-died lines. And now is not the time to be silent with doctors. They need to hear what we have to say about our health and health needs. No more taking it lying down. Now they will have to deal with us. Be in their faces.
 
Posted by Areneli (Member # 6740) on :
 
The confusion is enhanced by the very existence of Herxeimer reaction.
For a doc who is not familiar with the concept of Herx it is scary when treated patients suddenly deteriorate. In his mind it translates: don't treat these patients as they become worse.
 
Posted by lou (Member # 81) on :
 
I am sure this came from a press release distributed widely by the IDSA and its buddies. That is why it is one-sided. They just got the press release and blasted out the contents with no real journalism involved, just like the others who are covering this "story."
 
Posted by ldfighter (Member # 9405) on :
 
The IDSA press release is listed as the sole source on HealthDay.

Meanwhile, the article is also on Forbes.com (via google news) at http://www.forbes.com/forbeslife/health/feeds/hscout/2006/10/22/hscout535488.html

You can click on "comments" above the article to email the Forbes editor.

Not surprised to see this turn up in a major business publication.
 
Posted by Aniek (Member # 5374) on :
 
Click on "send feedback" way down at the bottom of the Yahoo page. I don't think it's a coincidence that these articles are appearing the day after the ILADS meeting.

Here is what I wrote Yahoo:

"Your article posted on today's website entitled "Long-Term Antibiotics Won't Fight Lyme Disease" is one-sided and could have significant detrimental effects on people's ability to get treated for a devastating illness.

I suggest you contact ILADS (International Lyme and Associated Disease Society) for information on their guidelines supporting long-term antibiotic treatment from Chronic Lyme Disease. ILADS is an organization of doctors across specialties with the common thread of treating patients with Lyme. The website is www.ilads.org

If you research the writers of the IDSA guidelines, you will discover that some of the writers contradict their own previous research without making any explanation for their change in views.

You can also read an editorial by ILADS here: http://www.ilads.org/press_10_06.htm"
 
Posted by 8man12 (Member # 7664) on :
 
lou, im not stateing this to make you mad.But if your neighbors watched that show,and they think you are sick.Or even family members.What does it look like.Have some of us been just fakeing for years.I sure wish i could wake up and all this missery would be gone pain,etc.

Now the poor people who are just finding out they have chronic lyme are really going to be in trouble.I sure remember how it was when i was seriously ill,and went to the doctors and couldnt get help,because i looked fine.

We have nothing.We have the Columbia study which used a SPECT scan.Which will never be recognised as a test or tool for telling on going lyme infection.All there is are a few journal articles saying lyme can be chronic,but since they are from foreign countries,or not done by th IDSA,they are going to listen to them.

My sister called me at 8 this morning a wanted to know if i wanted to go to walmart.I told her mornings are terrible.She said "didnt you watch tv last night,you arent sick anymore".She knows the truth,but medicle ducks and there staff will just take us to be nuts now.

I dont know but this is far the worst blow,we as lyme patients have been delt.Trustme it will be just weeks before insurance companies will be stopping the antibiotics.

But even then i still think of the newbies,lyme doctors now have pressure on them.Will they keep practiceing.One has already quit,it wont be long before others do.

Not meant to make anyone mad.But i've seen this downhill spiral since Klempners first study which suggested lyme was worse than chronic heart failure.Now he works for the government and it can be cured in a month.

In my book it is time for war.We been beat as low as we can go.We cant let it get any worse.I already had an email from a friend in NY. who couldnt get biaxin,2 months in a row,here insurance just changed the rule Friday.
 
Posted by treepatrol (Member # 4117) on :
 
They are condemming a lot of people to a slow agonizing crippling death.

God help us
 
Posted by bettyg (Member # 6147) on :
 
Here's what I just sent to the editor by normal email using above address.

LETTER TO EDITOR:

Your Oct. 22, 2006 article on " Long-Term Antibiotics Won't Fight LYME DISEASE was very biased from the IDSA, infectious drs. "short-term" antibiotic, abx, treatment only.

I am one of THOUSANDS of folks with CHRONIC LYME disease where I wasn't CORRECTLY diagnosed promptly NOR have I been CURED!

I've had chronic lyme for 36 years; 34 years misdiagnosed, and 2 years with aggressive treatment of 20 months of abx WITHOUT being cured!

"The guidelines also note that 95 percent of cases of Lyme disease are cured within 10 to 28 days of treatment with oral antibiotics"

95% cured my butt! How idiotic that statement was! It's a sham statement made when the IDSA won't acknowledge that there is CHRONIC LYME exists!

Once the tick's spirochete gets in our body, its cycle is every 28 days! Wormser has stated 10-28 days of abx is enough to cure those recently bitten.

Hog wash! Now IDSA mds are going to give 1 day pill only! Get real IDSA! Early tick bite patients need at least 2 months of abx to hopefully cure them. Then those 2 months will cover 2 cycles of the spirochetes.

Lyme disease has been reported in 49 of 50 states; exception is Montana!

According to the 2003 CDC Incidence map, in places like Colorado, Montana, North Dakota, and a few others, you have a better chance of getting hit by a meteor than contracting Lyme Disease:
http://www.cdc.gov/ncidod/dvbid/lyme/distribution_density.htm
or this "risk map":
http://www.aldf.com/usmap.shtml

Now compare that to this map that shows the incidence of positive Lyme test results in dogs in the USA:
http://www.idexx.com/animalhealth/testkits/3dx/lymemap.htm

Now wasn't that interesting seeing humans vs. dogs reported with LYME across the USA! It's not mainly in mid-Atlantic or NE states. I live in Iowa; look at Minn. and Wisc!

I suggest that you could put the link to the LDA www.lymediseaseassociation.org. Please talk personally with LDA President Ms. Pat Smith; thank you.

Here is also the link to the better guidelines at the ILADS website: http://www.ilads.org/guidelines.html

"We worked to make the guidelines as comprehensive as possible based on a thorough review of all credible scientific literature," lead author Dr. Gary P. Wormser".

Why didn't Wormser's comprehensive report have anything from the OTHER side for long-term abx with their CREDIBLE scientific literature?

I pray to God that the IDSA mds will open their narrow-minded biased attitudes and acknowledge us CHRONIC lyme patients having lyme for decades. We want to be CURED too!

Why are there 300 OTHER illnesses mimicking lyme disease that we can't get diagnosed correctly 1st time and with accurate western blot igm & igg blood tests by the 3 top USA lyme diagnostic labs: Igenex in Calif., MD Labs in New Jersey, or Bowen Labs in Florida?

Please note MAYO CLINIC, Minn. doesn't have the special lyme testing equipment that the other 3 labs have.

Betty Gordon [rant]
 
Posted by national catastrophe (Member # 10011) on :
 
Can we sue idsa?
 
Posted by Lymetoo (Member # 743) on :
 
We need more votes! Click on the first link, then on the FIRST star under "recommend story"....at least it's down to 2 1/2 stars now.
 
Posted by SpdDrv (Member # 5861) on :
 
Yes a friend sent this to me this morning saying YOU SHOULD READ THIS. I was like HELLO do you not remember 5 years ago when I weighed 98 pounds soaking wet and had it not been for 16 weeks of IV Rocephin Therapy and then another 6 months of 5 different oral meds I would be dead today! I told her enough said write the jerk and tell him you know more about lyme disease and how long term ABX helps people than he does!
Stacie
 
Posted by mojo (Member # 9309) on :
 
I replied to both stories.

This is so sad it hurts.
 


Powered by UBB.classic™ 6.7.3