Guest column: Data show long-term treatment of Lyme disease ineffective Ashford, Conn. --
With tick season fast approaching, the Infectious Diseases Society of America, the nation's largest medical society of infectious disease doctors and researchers with more than 8,600 members, wants to help people understand Lyme disease.Lyme disease is the most common vector-borne disease in the United States, and Connecticut leads the nation in reported cases.
The disease is transmitted by the bite of a deer tick that is infected with a bacterium, Borrelia burgdorferi. If an infected tick is not removed from the skin within a day or so, a person may develop Lyme disease.Most commonly identified by a circular, red ``bull's-eye'' rash, the infection can spread to affect the joints, heart and nervous system if left untreated.
Extensive research shows a short course of antibiotics is highly effective, and the vast majority of people recover in a couple of weeks with no lingering effects.Unfortunately, Lyme disease has been drawn into the center of controversy by a small group of physicians and patient advocacy groups who attribute a wide range of symptoms to what they call ``chronic'' Lyme disease.
The self-described ``Lyme-literate'' community claims that months or even years of high-dose antibiotics, often delivered intravenously, are required to rid the body of infection.
However, scientific evidence to date does not support long-term antibiotic treatment for Lyme disease.
In our 2006 treatment guidelines, IDSA experts combed through the medical literature -- and even examined evidence provided by ``Lyme-literate'' physicians -- and did not find convincing evidence that this treatment works better than placebo.
In fact, long-term antibiotic treatment for Lyme disease is not only expensive and ineffective, but can be extremely harmful to a patient's health.
Such treatment can cause infections and reactions to the drugs, and also can foster the development of life-threatening drug-resistant superbugs.Science is constantly evolving, and if convincing evidence emerges that long-term antibiotics do more good than harm, we would gladly support it.
Right now, however, we cannot endorse this protocol.We encourage patients who receive a ``chronic'' Lyme disease diagnosis to get a second opinion from a physician with experience treating a wide range of diseases and conditions.
It is essential for patients to receive the correct diagnosis so they begin the right treatment for their ailments -- and avoid treatments that cause unnecessary harm to their bodies.In the meantime, there are simple measures to prevent Lyme disease, including avoiding tick-infested areas, wearing protective, light-colored clothing when outdoors, and applying tick and insect repellent to your exposed skin and clothing.
Anne Gershon is president of the Infectious Diseases Society of America, headquartered in Arlington, Va., and with members across the country.
I read you wrong. That's my wonderful brain, I guess.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Lymeorsomething
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Member # 16359
posted
Where is their "extensive" evidence?
As someone else mentioned, abx have long been prescribed for simple acne so I'm not sure Anne is very convincing here.
From what I've seen on tv in terms of the myriad of drugs promoted, antibiotics are tame in comparison. Doesn't Anne have anything better to do?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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METALLlC BLUE
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Member # 6628
posted
Interesting, I have read over 500 studies demonstrating seronegative Lyme Disease, persistent infection inspite of "adequate" antibiotic therapy in animals and humans, a chronic, almost unanimous agreement in the scientific journals *not the media or guidelines of the IDSA* that testing is not as accurate as it should be -- disagreements range from "Testing is severely inaccurate, to seronegative patients are common based on PCR and culutre -- which is the gold standard if observed.)
I could go on and on. Find out for yourself. Go to pubmed.gov and read the studies yourself. You'll have to dedicate time to doing it, which turns a lot of people off, but then again those same people are ****ing morons.
Now that's offensive. To do your search on pubmed, I'll even hold your hand.
Those are a few. E-mail me, I'll give you a list of studies demonstrating persistence. I'm working on collecting the rest. I've read them, but documenting them is tedious.
When you read the studies,you'll get a long list of studies for each search. Just read them all. You'll see.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
How in the world did they happen to pick the town of "Ashford CT" to make this story from? It was in the Norwich Bulletin, which is not anywhere near Ashford, nor is it a newspaper which covers Ashford.
Ashford is a teeny, tiny town without even a high school. Since I'm pretty sure Ms. Gershon doesn't live in Ashford, nor is the IDSA headquartered in Ashford, I have to wonder what DOES come from Ashford:
1. The Ashford Lyme Group, which has published many articles on Chronic Lyme Disease in several Local papers and started a support group.
2. wwww.lymefriends.com, which is quickly becoming well known around the lyme community, and was started by Blake and Tracy Will who live....where? ASHFORD CT.
3. Also happens to be ASHFORD CT where the parents who stepped forward in the Dr. Jones case, who are now key witnesses to his defense, live.
So is this a coincidence? How does a newspaper randomly choose a town hardly anyone has even heard of with a population of 4,000 no where near them as the originating source of a story????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."
Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.
Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
"Our investigation was always about the IDSA's guidelines process -- not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.
"This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public's confidence in such critical standards."
THE GUIDELINE REVIEW PROCESS
Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.
The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.
Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."
To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.
Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.
Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.
The panel's final report will be published on the IDSA's website.
ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION
IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.
IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.
The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.
When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.
The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.
The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.
In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances." In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.
Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.
Content Last Modified on 5/14/2008 8:40:39 AM
Posts: 789 | From CT, | Registered: Jun 2006
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'Kete-tracker
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Member # 17189
posted
Just goes to show ya... small town papers will cover an issue with the depth of a pi** puddle.
Funny that "long term antibiotics"... more than 2 weeks, as inferred from the article, have been scientifically shown to be "ineffective" in treating Lyme disease. If Lyme is usually treated "successfully" in just 2 weeks "with no lingering effects", why would most people even NEED more than 14 days of abx?? :/~
It's misinformation at it's most basic... and such soundbite info coming from the "President of the IDSA" can be extremely dangerous in regards to the future health of tens of thousands of people. It's terrifying she can get away with this stuff.
Someone with impeccable credentials & years of Lyme research under their belt needs to have the guts to come flat out & say Ms Gershon is full of S*%#... in an eloquent, authoritative way, of course.
BTW, does anyone here know ANY of these people who had no lingering symptoms after a 14 day course of doxycycline, the recommended abx??
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Dekrator48
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posted
Doesn't that just make you want to invite the entire IDSA on a nice long camping trip in the Connecticut countryside?
Here are my comments that I left on that newspaper's site: (hope you'll do the same...just click on the tinyurl at the beginning of dmc's post):
It is a travesty in the US that the IDSA continues to deny the existence of chronic lyme and the effectiveness of long term antibiotic therapy. You should ask the thousands of chronic lyme patients if they have been helped by long term antibiotics and the answer would be, YES!
I did not see any so called scientific evidence in this article.
The real experts are Dr's belonging to ILADS. Treatment of a life-altering, disabling, life threatening infectious disease such as lyme(and coinfections) far outweighs the possibility of developing a 'superbug'. It is a decision that should be left to the patient and the real lyme experts.
Please do an article with the point of view of the ILADS and real lyme patients. If the IDSA Dr's weren't benefiting from insurance and drug co's they might be willing to tell the truth, but it's all about money.
Most Dr's wouldn't even recognize the symptoms of chronic lyme, let alone know how to diagnose or treat it.
There are hundreds of studies on Pubmed verifying the existence of chronic lyme.
Thousands of people will be misdiagnosed each year with illnesses like fibromyalgia, chronic fatigue syndrome, MS, Parkinson's, ADHD, autism, Alzheimer's and psychiatric illnesses, when they really have chronic lyme.
Do the real research and you will learn the truth!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am wondering how many newspapers this article appeared in? I can see it was also in the Greenwich Times, was it just CT or did she send this article everywhere?
I imagine it is geared at halting the pending legislation in CT which is doing so well at this time.
I've seen if not this exact wording, something very similar on the IDSA or CDC website in the past. I don't think it's anything new.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Actually, I started laughing with the beginning sentence.
The IDSA wants to help me understand Lyme disease.
That is as funny as it is maddening.
Propoganda. Pure and simple.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I spent years and gobs of $$$ getting second/third/etc. opinions and they only thing that accomplished was to lighten my wallet.
Until the IDSA comes up with a better alternative than "get a second opinion", their criticism is misguided and unhelpful.
Posts: 727 | From USA | Registered: Mar 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
uh, where are all the people that got cured of only a couple of weeks of antibiotics?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TerryK
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Member # 8552
posted
From the article: Extensive research shows a short course of antibiotics is highly effective
Many of the studies that show that short course abx is highly effective are based on the idea that anyone with a bullseye rash has lyme disease.
Turns out that only 4 of 20 strains that cause a bullseye rash cause disseminated disease. See "Cure Unknown", page 343. This means that all of those studies that were based on this assumption need to be re-assessed.
Those who never actually had disseminated disease would have appeared to be cured with short coarse abx because they were never sick to begin with!!
Edited to add: AND, those studies that show that long term abx does not work are also very flawed. I don't beleive that they even tested for other TBI's or treated any of them. Also, their idea of long term abx is not long enough for most people who have been infected for years to decades without treatment. Many other flaws in those studies have been written about by our LLMD's
The IDSA HAS to know that their position will eventually crumble as the science is not on their side.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I posted this. Please tell me if you think I'm being paranoid, which I usually am not. If it is inappropriate I will delete it.
*****************************************
I find it ominously less than coincidental that this article claims to originate in Ashford, CT. Ashford is a small town in Northeastern CT, Windham County, not even a town which this newspaper covers, with a population ot 4,000.
The IDSA is not in Ashford. Anne Gershon is not in Ashford. The Norwich Bulletin is not in Ashford.
What IS in Ashford are two parents who are key defense witnesses in a highly publicized case against a prominent Lyme pediatrician, Dr. Charles Ray Jones.
What IS in Ashford are the originators of one the most popular Lyme Forums utilized internationally by patients with Chronic Lyme Disease, www.lymefriends.com.
What IS in Ashford is the Ashford Lyme Support Group,a group of both patients and activists who have publicized articles about Chronic Lyme Disease in numerous local papers.
Is it a coincidence that 'Ashford, CT' was chosen as the origination of this article? Or is this another one of IDSA's veiled bullying tactics, aimed at unnerving some very specific yet vocal people who happen to reside in the quite, sleepy town of Ashford, CT?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Sounds fine to me, tracy....good for you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Luvdogs suggested I clarify that there was no mention of Ashford, Ct.
I have a physical copy of this letter to the editor, in my hand at this minute, that ran in another paper. The title of the piece is Diagnosing Lyme, and the first line is "To the editor:"
Nowhere does it mention Ashford, CT.
The bio at the end says: "The writer is president of the IDSA, which is based in Arlington, VA."
Wait a second, was that just a black helicopter overhead. Never mind. Gotta go.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
LMAO.....you are too funny!!! Thank you.
I guess the Norwich Bulletin just randomly picked Ashford and now I have made myself look like a paranoid fool (not usually my character) all over the Lyme World?????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
There is good reason to be paranoid in the crooked Lyme business.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I was told by a health professional,"You dont have to treat or anything,,,it goes away on its own!!"
My response,"Yes it does,every time,,,when the person having it 'DIES'"
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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jt345
Unregistered
posted
Hey Don
I t worked, right ? Only Your the one that went away.
I was told once after 60 days od doxy,That She( the Doc) could not treat me any fither. I would get better, but it would take 3 to 5 years,and that in simple words I would feel like hell.
Well it has been almost 14 years ,on and off oral and IV . She was right about one thing I feel like hell. appleseed
sorry for being negative,but today I feel like hell
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jt345
Unregistered
posted
hey Guys@Gals
I am dealing with with rage today,sorry for my use of a certian word. I should of said dirt,rotten,or just poorly. If I offended anyone ,I am sorry. I just wish I had some control left. appleseed
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
No worries, the site filters out words that aren't allowed, so you were within the rules!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My first ID doc's professional opinion was that it was depression. A second doc diagnosed CFS. Several docs later I saw an LLMD and he diagnosed me with Lyme.
I've been on abx for 18 months now. I'm working and living a somewhat, although not perfect yet, normal life. I was on my deathbed before treatment with longterm abx.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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I guess it is appropriate for me to finally emerge from lurker-dom and chime in here as I am one of the ones who received immediate treatment that the IDSA claims will cure Lyme.
I first developed a bulls-eye rash along with typical lyme symptoms last June 18;
- began 400 mg doxycyclene 3 days later and continued to take it for the next 4 1/2 weeks
- symptoms disappeared within 2 weeks, the rash in 3 weeks
- symptoms returned with a vengeance 4 weeks after finishing the doxy
- then submitted my sample to Igenex in August, which came back positive (IgM)
- scheduled the next available appt with a LLMD (Dr M in Wi) for April 2009
- began 400 mg doxy again in Sept; added 3 month course of 500 mg Levaquin for suspected bartonella in October; very, very sick thru 2008
- added Buhner protocol in January after Levaquin ended
FINALLY, began feeling much better in mid-January - up to 70% functioning at one point - and then to my great ... shock, fear & sadness, symptoms returned (though not nearly as bad as before) about 3 weeks ago???
Just in time for my LLMD appt I guess.
SO HERE I AM IDSA - not exactly fitting into the nice & neat little fairy tale you like to tell.
By the way, a looooooong overdue sincere thank you and appreciation for all of you who shared your stories and enabled me to learn enough to take some of the right steps from the beginning.
Sorry for the long 1st post, I'm just tired of hearing IDSA's bs. I also wanted you all to know that even if you had been diagnosed immediately and had taken appropriate action, you may still have developed chronic symptoms.
It is what it is.
Thank you.
dak
Posts: 1 | From Northern Illinois | Registered: Mar 2009
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bettyg
Unregistered
posted
dak, i hope you take the time to post that on the above thread !! take that IDSA!
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