A Bit Of Reassurance On Lyme Disease | Arthritis Information

 

Tick bites generate fears of Lyme disease in every parent, but this study of 99 children finds that one of Lyme's complications -- arthritis -- has a good prognosis. Researchers led by Robert Sundel, MD, a rheumatologist at Children's, found that 77 percent of children were cured with less than 3 months of antibiotic treatment. The remainder were also ultimately relieved of their arthritis, though additional treatment (usually one month of intravenous antibiotics) was required. As long as children were treated until joint inflammation was fully controlled, there were no long-term problems.

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine and 12 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 397-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: http://www.childrenshospital.org/newsroom.

Children's Hospital Boston

From Medical News Today

[QUOTE=levlarry]

 Researchers led by Robert Sundel, MD, a rheumatologist at Children's, found that 77 percent of children were cured with less than 3 months of antibiotic treatment. The remainder were also ultimately relieved of their arthritis, though additional treatment (usually one month of intravenous antibiotics) was required. As long as children were treated until joint inflammation was fully controlled, there were no long-term problems.

[/QUOTE]

That's what I wish.  That they had let my daughter stay on antibiotics longer the first time around, until her joint inflammation was fully controlled.  They stopped at 21 days, saying no infection was proven. 
I wonder how many of those children had a Positive Lyme test ?? I also wonder how many children have suffered if there test is Negative even though they are infected? Also the standard treatment is 14 to 21 days of ABX. These kids got at least 90 days ?? Why? And also a month of IV. None of this is along the IDSA guidelines and if fact goes against all their recommendations to Dr's ??? [QUOTE=6t5frlane]I wonder how many of those children had a Positive Lyme test ?? I also wonder how many children have suffered if there test is Negative even though they are infected? Also the standard treatment is 14 to 21 days of ABX. These kids got at least 90 days ?? Why? And also a month of IV. None of this is along the IDSA guidelines and if fact goes against all their recommendations to Dr's ???[/QUOTE]

This is why I'm crying from this post.  Whatever my daughter had/has, it was enough for a teaching children's hospital to treat her for an infection.  She was improving, no question, says so even on her discharge papers.  But all treatment was stopped at 21 days.  'No infection proven', "She didn't get all the way better", "If the antibiotics were doing anything, she would be well by now", "She did do better, but it was just a coincidence".

This post is not reassuring to me, it is heartbreaking.  I know she could have gotten completely well then.  I knew it then, but they made me think I was crazy.
Suzanne. I'm very sorry to hear about your daughter but unfotunetly your story is like many others. If I were you I would get re-tested by a Lyme Literate DR and go from there. Remember that originally in Lyme CT there was an outbreak of JRA........Until proven otherwise. Take a peak @ Lymenet.org and search about. A 5 year old cannot be in charge of her health so you have to be diligent to make sure you have exhausted all posibilities. Your DR's do not sound educated in the Lyme area...Sorry just my 2 cents. Wishing you Good Luck.....Since the opinions that Lev has posted are at the highly contentious centre of the ongoing Lyme controversy, it doesn't offer much reassurance.


Doctors to reassess antibiotics for 'chronic Lyme' disease
By DAVE COLLINS – 3 days ago
HARTFORD, Conn. (AP) — Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which say there's no evidence long-term antibiotics can cure "chronic Lyme" disease — or even that such a condition exists.
The agreement settles an unprecedented antitrust investigation by Connecticut's attorney general over the matter. The doctors group makes clear that current guidance for treating Lyme disease remains in place.
But that didn't stop claims of success by the attorney general and people who believe they suffer long-term effects of the tick-borne disease.
"It's a great victory for patients," said Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in New Jersey. "It's time that Lyme patients got the respect they deserve."
The agreement, announced Thursday, calls for the doctors group to form a new panel of experts to review standards for treating Lyme disease. The Infectious Diseases Society says it agreed to the deal in part because the panel must be made up of doctors and scientists.
Lyme disease can be hard to diagnose with its vague, flu-like symptoms; the most obvious sign is its trademark round red rash. Usually, it's easily cured with a few weeks of antibiotics. Those not promptly treated can develop arthritis, meningitis and other serious illnesses.
About 20,000 new cases of Lyme disease are reported every year, but experts believe the annual total may be five times higher.
Connecticut leads the nation in reported cases and has been a battleground in the national debate over treatment. Lyme disease is named after the Connecticut town of Lyme, where the illness was first discovered in 1975. And the state is home to a number of people who claim they suffer long-term problems from Lyme disease — problems that many doctors are unable to confirm or treat.
The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says.
"We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer ... and we look forward to the opportunity to put to rest any questions about them," said Dr. Donald Poretz, the society's president.
The society will consider a variety of scientific evidence and determine whether the 2006 guidelines are justified or need revision.
The guidelines are important because they discourage adequate treatment, advocates of chronic Lyme sufferers say. Perhaps just as significant is that insurance companies refuse to pay for long-term antibiotics to treat chronic Lyme.
"We are delighted with this settlement," said Diane Blanchard of Greenwich, who said she was sick with Lyme disease for 10 years before a long-term antibiotic treatment relieved her symptoms in the late 1990s.
"The IDSA guidelines are now clouded by this decision. My greatest hope is that patients will regain their right to treatment," said Blanchard, now co-president of the advocacy group Time for Lyme.
Philadelphia-based health insurer Cigna Corp. said it is reviewing the agreement to see if any changes in policies are needed. Cigna covers up to 28 days of intravenous antibiotic therapy for Lyme disease and, like many insurers, cites the Infectious Diseases Society's guidelines in its coverage plan.
Cigna does not pay for "repeated or prolonged" courses of antibiotics, saying they are "experimental, investigational or unproven."
Connecticut Attorney General Richard Blumenthal and advocates say the agreement is the first time the medical establishment has bowed to the pressure of a potential court fight and agreed to re-evaluate care standards.
"My main goal all along has been a process that is fair, open and free of conflicts of interest," Blumenthal said.
Blumenthal said his investigation found that some of the 14 experts who approved the 2006 guidelines got consulting fees, research grants and stock ownership from drug companies and other businesses that have a stake in the treatment and diagnosis of Lyme disease.
He would not name the panel members or the companies. He said the backgrounds of the new experts looking at the guidelines will be checked for any potential conflicts.
The issue involves antitrust law, Blumenthal said, because the panel excluded some opinions and evidence that may have supported other treatments in development, including vaccines.
Blumenthal's office did not take a position on the proper treatment of the disease or whether chronic Lyme disease exists.
The Infectious Diseases Society denied any conflict of interest.
"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy."

http://ap.google.com/article/ALeqM5hokteRVeiNb790jgYZB9xIeY45ewD90DOBR80

I personally take exception to the last paragraph. People not treated with cheap, patent expired long term antibiotics will instead go on to use much more expensive patented drugs to manage their various disease manifestations.

The fact is there are medical experts on both sides of the fence. The jury is out. I do know if I had Lyme I would be looking for some way to get the longer term antibiotics rather than risk chronic disease. Also, I would not be suprised if many people diagnosed with RA, Lupus, MS, and various other AI diseases actually have untreated Lyme. It's something that should really be more considered than it is.Thanks, 6t5, but she has been tested for Lyme twice since and still comes up negative.  First, at the children's hospital, second before going back on AP, and this last time by Igenex.

She had titers for brucellosis when she first got sick (and they were very celebratory about that, sent me home with rxs, took her picture....), but the confirmatory was negative for that so they told me not to give her the meds.  She was negative for it when they tested her again in Jan.  I don't know if being on AP has any effects on the tests?

She is stable on AP, and for now I think we have done all the testing available.
Well I know that you should Never be on ABX and get tested. No Point. If you are on ABX you should be off them at least 10 days before any tests. Did she show any positive  bands on any of the tests?? You yourself saisd she was improving. Some people Never get a Positive test. Please remember the CDC criteria and how faulted it is. AS I said look at peoples storts ( like yours ) that have been cured on ABX without the positive blood test. Remember the test is an Anti-body test. It does NOT show if you have LymeCrap,,,, So she is on ABX Now ???? and stable ???how disheartening that humans aren't treated as long as dogs!~  My Irish Wolfhound was found to have Lyme last fall and was given enough antibiotics for 45 days !~ Yes!

She got sick Spring 2005, first abx treatment.  I spent a confused year trying to make sense of what I saw vs. what they were telling me.

Summer 2006 traveled for second opinions (the "coincidence" dr.) and she went back on AP in August 2006.  That dr. also recommended mtx, saying we could not wait for Zithromax to work, and we went back to the ped rheum ready to start it, too..

In the fast paced world of pediatric rheumatology, she finally started mtx in late Oct. 2006, but after two serious infections, we stopped it in Jan. 2007.

We never treat for pain, she takes no NSAIDS, nothing but Zithromax 3 x week.  Not a cure for Lyme, but it keeps her off the 'roller coaster', let's say.
My 'yes' was for 6t5, should have quoted him!

Thanks, babs, and I just read something about a Lyme vaccine for pets?   I think it was saying not to get it (?), but i had no idea one even existed.
Suzanne2008-05-06 10:02:22Gorillas and other animals found to have arthritis are also treated with long term antibiotics. [QUOTE=levlarry]

As long as children were treated until joint inflammation was fully controlled, there were no long-term problems.

[/QUOTE]

If I can compose something that doesn't come off sounding psychotic, I might ask Dr. Sundel what happens to children who were not treated until their joint inflammation was fully controlled, and how they manage the treatment of their long-term problems.
Suzanne so what do the Ped RA DR's say now? If she is respoding to ABX ?? [QUOTE=6t5frlane]Suzanne so what do the Ped RA DR's say now? If she is respoding to ABX ??[/QUOTE]

They still think I am crazy.  She is not completely well, and I know that, but xrays showed she is stable. 

I think if my daughter were on traditional meds, the ped rheum would be happy that she is stable.  He cannot tell me that one single thing will change for her, if she starts what he wants her on.  He is (now) honest that remission is rare, and that when a med stops working, the disease is then harder to control.   I know she tolerates Zith;  I know what other traditional meds have done to her, side effect-wise.  It is hard to put her through that, when remission is rare and she doesn't need them to function.

The last visit, he agreed with all of my concerns.  He tried to bring up lymphoma, as that must be the main concern of most moms.  I said I didn't care about that, because she could get it anyway; I cared that if she blows through all the biologics now,  there wouldn't be anything left for her to be able to function when she had a baby and couldn't pick it up.

He said, "They'll develop more by then."

So, as my little normal sedrate never miss school Zith girl danced the Macarena around the exam room, he recommended Humira, mtx, an NSAID, Prevacid, and a steroid injection.  It's a game we play about every three months or so.  One day, one of us will win;  I have absolutely no idea who it will be. 
Hopefully YOUThanks (crying again...) Don't cry Suzanne - you will win so you're daughter will win.  Hey, don't forget to get your Igenex results from the AP doc.  I had my Igenex test and was told I'm nagative, but 6t5 pointed out about the bands.  I'm going to look into that as soon as I can come up for air with all the stuff I dropped with the last bizarre adverse reaction to meds. Aw, Suzanne, you're a good Mom who's really gone above and beyond what most Mom's would. If anyone can beat this, you two can!
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