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» LymeNet Flash » Questions and Discussion » Medical Questions » OMG!! The newspaper interviewed our family and then published this crap!!

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Author Topic: OMG!! The newspaper interviewed our family and then published this crap!!
Amy C
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I am going to post this in support section too:

Ok my mom and I are totally p*ssed off!! The local newspaper interviewed us several weeks ago. She was suppose to publish our article the following Tuesday. Well several weeks have went and she never did. Plus she wouldn't answer my moms calls or emails.

So today my mom goes to pick up a paper. And this is what we find...brace yourself people!!

http://www.tribtoday.com/page/content.detail/id/523769.html

I can't even express how we feel!! It would be too vulgar and I hate those words!!

Anyone know what we can do to fix this? How do we let people know that this is bull? I mean so many people read this today. I don't even know where to begin [Frown]

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Toppers
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I'm from your neck of the woods and I am positive w/ co-infections if there is anything I can do to help.

What a misinformed piece of work that is.

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Amy C
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Thanks! I know there are a lot of us from Ohio.

We are going to try to retaliate! Maybe a letter to the editor. After all we were interviewed and this was suppose to be our story!

Does anyone know where I might start to get facts or articles to back up the true facts? So I have some proof of what I am saying to these people!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
bettyg
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copying article here and breaking up for neuros like me to read/comprehend...betty


Lyme Disease

What you need to know to stay out of its reach


By JEAN A. CORLISS
Tribune Chronicle correspondent

POSTED: June 23, 2009


Fact Box

- Avoid wooded, brushy and grassy areas, especially in May, June and July. Contact the local health department or park/extension service for information on the prevalence of ticks in specific areas.

- Wear light-colored clothing to be able to see ticks that get on you.

- Wear long pants and long-sleeved shirts.

- Wear shoes that cover the entire foot.

- Tuck pant legs into socks or shoes, and tuck shirts into pants.

- Wear a hat for extra protection.

- Spray insect repellent containing DEET on clothes and exposed skin other than the face, or treat clothes with permethrin, which kills ticks on contact.

- Walk in the center of trails to avoid brush and grass.

- Remove your clothing, and wash and dry them at high temperatures after being outdoors.

- Do a careful body check for ticks after outdoor activities.

- Source: FDA


Lyme disease was first recognized in the United States in 1975 after an unusual outbreak of arthritis near Lyme, Conn.

Since then, according to the Centers for Disease Control, reports of Lyme disease have increased dramatically and the disease has become an "important public health problem" in some areas of the United States.

Lyme disease is caused by a spiral shaped bacterium and transmitted to humans by the bite of infected black-legged ticks. Animal hosts such as deer and mice can provide food for the ticks in their various life stages.

More cases of Lyme disease are reported to the CDC than any other bug-borne disease in the U.S. There were more than 27,000 cases reported in 2007.


The good thing about the report is that Lyme disease is not common in northeast Ohio or prevalent in the state of Ohio, Leonard P. Blass, director of infectious disease at Forum Health Trumbull Memorial Hospital said.


In 2007, there were 33 confirmed cases in the state reported to the CDC.


"There are three regions of the country that have high incidences of confirmed Lyme disease. They are New England, including Connecticut, Westchester County in New York and Martha's Vineyard, parts of Wisconsin and Minnesota, and California," Blass said.


Wildlife Officer Jerrod Allison of the Ohio Division of Wildlife in Trumbull County said that he has not seen any of the ticks in the county that can cause Lyme disease. He also said that he does not see a lot of any other kinds of ticks.


"The state of Ohio screens or has screened deer generally in the hunting season looking for Lyme disease in any ticks they carry," said John S. Venglarcik, an infectious disease specialist at Forum Health and medical director of the Mahoning County Board of Health.


Venglarcik diagnosed the first case of confirmed Lyme disease in Ohio in 1983.


"It's odd, but it appears the ticks respect the state border. You just don't see a lot of transmission here."


In general, ticks need to be attached for 48 to 72 hours before they can transmit the Lyme disease bacterium.


Most people are not aware of being bitten. Early manifestations of the infection can include fever, headache, chills, muscle and joint aches, fatigue and a characteristic bull's eye-looking skin rash called erythema migrans.


"Many people who have been bitten by an infected tick are asymptomatic; others exhibit flu-like symptoms," Venglarcik said. "Only about 40 percent get the characteristic rash."


According to the CDC, the Lyme disease bacterium can infect several parts of the body, producing different symptoms at different times.


Not all patients with Lyme disease will have all the symptoms and many of the symptoms can occur with other diseases, and thought to be those of Lyme disease.


"You can be infected but not sick," Blass said. "Just the presence of antibodies doesn't confirm that someone has Lyme disease. It is very tricky and challenging to diagnose."


The CDC recommends a two-step process, if needed, when testing blood for evidence of Lyme disease.


The ELISA, or enzyme-linked immunoassay, is very sensitive in screening for the disease.


IFA, or indirect fluorescent antibody test, also can be used to identify antibodies.


If the ELISA or IFA is positive or indeterminate, the Western Blot Test can be performed to confirm the results of the previous tests.


These tests do not detect an infection until the body begins to produce measurable levels of antibodies to the Lyme disease bacterium, usually two to four weeks after the bite of an infected tick.


"The CDC recommends that if there is any question on the test, to do them again a few weeks later. There are cousins of Lyme disease, having similar spiral-shaped bacterium, which include syphilis and Legionnaire's disease," Venglarcik said.


Several antibiotics are effective for treating early Lyme disease and are usually given orally, but may be given intravenously in more severe case. The drugs include doxycycline, amoxicillin, ceftriaxone and rocephin.


"We treat people with antibiotics for four weeks," Venglarcik said.


"Recently, the CDC said that a few patients may have persistent or recurrent symptoms and may require a second four-week course of antibiotic treatment. If used any longer, serious complications and even death might occur."


In patients who have nonspecific symptoms after being treated for Lyme disease and no evidence of active infection, studies have shown that more antibiotic therapy is not helpful and can be dangerous.


The National Institutes of Health has funded several studies on the treatment of Lyme disease. These studies have shown that most patients can be cured with a few weeks of antibiotics taken by mouth.


Patients with certain neurological or cardiac forms of illness may require intravenous treatment.


Some signs and symptoms of Lyme disease may not appear for weeks, months or even years after the tick bite, the CDC says. These can include


arthritis, nervous system symptoms, which can include numbness, pain and nerve paralysis; irregularities of the heart rhythm and problems with memory or cognition, fatigue, headache and sleep disturbances.


Varying degrees of permanent damage to joints or the nervous system can develop in patients with late Lyme disease.


These are generally patients in whom Lyme disease was not recognized in the early stages or in whom the initial treatment was inadequate. Lyme disease is rarely life threatening.

"There is post-Lyme disease syndrome.


Some symptoms are linked to the disease and others are not. Those who have persistent arthritis and have been treated for Lyme disease do not need an indefinite course of antibiotics," Blass said. "These patients should see a rheumatologist."


There is no credible evidence that a person can get Lyme disease from the air, food, water, sexual contact, birds, deer, insects such as mosquitoes, flies or fleas, or directly from wild or domestic animals.


"You cannot get Lyme disease from blood transfusions," Venglarcik said.


"It cannot be transmitted by breast milk or person-to-person or intrauterine."

2009 . All rights reserved

View Comments: | 1-3 | Post a comment

MissDiagnosed Marianne
06-24-09 12:55 AM

I cannot believe this reporter had the nerve to come to my daughter's home, at our request, and interview our family and then have the nerve to print a story that is the exact opposite of everything we told her to be true about Lyme Disease.

I gave her information from ILADS, CT Atty General, Lyme Disease Association, Under Our Skin, and told her there were 2 sides to this story and that the CDC and IDSA were full of crap.

She completely disregarded us and everything we told her, and printed the exact opposite.

Sadly, people will read this article and think it is true.

Our family is an example of 3 generations with late stage/late diagnosed lyme disease that was passed on every way possible to pass it on!!! What a slap in the face Jean Corliss!!
*************************

MD04101
06-23-09 11:49 PM

This disease causes so much suffering. To say that this disease doesn't lead to death is just ridiculous.

If complications don't kill you, then how about the suicides? This story presents one view.

There are good doctors doing great research that are not influenced by CDC and insurance companies.

There are reasons why OH only has 33 confirmed cases. The testing is old and its hard to get a positive result. There could be many more cases out there.

If Lyme doesn't get you, then co-infections can.

Readers, please do your research and protect yourselves from ticks at all costs. This is a miserable disease.
*******************

jmb writes
06-23-09 11:30 PM

This is the most biased, untrue piece of journalism I have EVER read. Who paid you to misrepresent Lyme Disease?

Ticks stop at the border? I have given birth to 3 children who have tested positive for lyme (one is now dead).

Next time, do your homework, or at least let us know that you were paid off by the insurance companies up front. Shame on you!
*************************

You must first login before you can comment.
*****************************************************

amy/family, i'm so sorry to read this piece of HOG WASH, and i'll comment of course!!

i'd write a REBUTTAL letter on ALL the things wrong with the article and ask that it be published in TODAY'S NEWSPAPER with your corrections of all the wrong statements!! if you live close enough, DRIVE IT THERE & GIVE PERSONALLY TO REPORTER! [cussing] [toilet] [tsk] [puke]

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liesandmorelies
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Hang in there Amy!!!

Comments will be rolling in anytime. People are already posting comments to the paper.

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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Amy C
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Thanks everyone! Thanks BettyG for making that easier to read too!!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

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bettyg
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additional replies:

BettyG
06-24-09 1:52 AM

This article should just have shown Dr. Blass' name at the top instead of your reporters! He was quoted on everything; wrong info! HOG WASH.


Lyme and co-infections/other diseases the ticks carry are in ALL 50 STATES! Go to CDC'S website to see from 1980 to present stats.


Ticks attached for LESS THAN 30 MINUTES even cause LYME; I've talked to these folks! The hrs. shown are ridiculous.


The ELISA is NOT very sensitive! IGENEX lab in Calif. IS showing 15 protein bands! IGX diagnosed my western blot igm/igg tests postive! My 27 yr. PRIMARY dr. CLINICALLY DIAGNOSED me & igx's results documented it further.


MAJORITY are NOT CURED by 4 wks. abx! They become CHRONIC for life!


See ****lymememorial**** for a list of ALL who have died from LYME COMPLICATIONS!

betty note: they do NOT allow web sites to be shown!!
*************************************************************


NIH shown many can be cured in 2 WKS..HOG WASH!


Your last paragraphs about how it can NOT be passed on are so WRONG: blood, sexually, congenitally, breast milk, fleas/mosquitos.

IOWA LYME ACTIVIST
****************************

LibbyisTicked
06-24-09 1:36 AM

Did anyone at the paper even research this disease??


You really need to retract this article and do some serious unbiased research and reporting.

Lyme Disease is running rampant through your neck of the woods and this disease is a very, very serious disease which can if not erradicated lead to multiple system damage. It can even cause death.


You really need to read the book "Cure Unknown" by Pamela Weintraub, who has been a scientific journalistic writer for many years. Or, better yet watch the recently award winning movie "Under Our Skin".


The CDC claims that approximately twenty thousand cases of Lyme Disease are reported per year, but the CDC also claims that, that number is probably 10x greater due to the fact that the testing that is recommended leaves roughly 180,000 people unaccounted for.


It was ignorant to report that ticks don't cross state borders. Let me tell you, ticks know, no borders due to the fact that they hitch rides on deer, white mi
****************************************************

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bettyg
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amy, as more people post, would you copy them here to your article please? I'M SWAMPED; so far behind in everything ... big thanks! then you will have permanent reminders of what was said & by who. hugs/kisses...
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Amy C
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Yes, I will! Thanks [Smile]

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

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Selection10
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Replied. Ugh I hate reporters like that.

He/She should be fired.

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Wonko
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I posted a comment.

I ended it by stating:

"The Tribune owes it to it's readers to correct for and amend this seemingly biased and hastily prepared report."

The article is so poorly done, it reads like a high school report completed during homeroom.

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Rambler
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"It's odd, but it appears the ticks respect the state border. You just don't see a lot of transmission here."

This quote takes the cake!!!!

--------------------
Be Well

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TerryK
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The CDC has known for a long time that Lyme disease can be passed to a fetus.

From the CDC website
"Transplacental transmission of B. burgdorferi has been documented in a pregnant woman with Lyme disease who did not receive antimicrobial therapy."
http://tinyurl.com/rbrz2n

There are autopsy reports of newborns with lyme that prove beyond a doubt that it can be passed in pregnancy.

see page 5
http://tinyurl.com/q27mvk

Case studies and pathology reports
http://tinyurl.com/q3hpne

Written by an LLMD
http://tinyurl.com/2zrk2u

Written by a lyme researcher
http://tinyurl.com/poxvfd

From ILADS:
"As in Lyme Disease and Babesiosis, Bartonella may be transmitted to the fetus in the infected pregnant patient."
http://tinyurl.com/wrres

At the very least, she should have provided both points of view.

I would gather the data that refutes the article and present it to someone above her head and ask that a more balanced article be written.

Terry

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wtl
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Logistically, Amy, this could be a separate story the interviewer has done about Lyme. I did not see in the article a straight quote from her invterview with you. I think the only thing you could voice to the editor as interviee is that if what you said has been misquoted, in this case, there is none.

As a general reader of the publication, we can all comment and even write to the editor for misleading information. But it is up to the editor to publish those comments and offer any correcting statement.

Sorry this has turned out to be a pain. The lesson is that not all media attention to Lyme is a good thing, as it has demonstrated here.

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sixgoofykids
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OMG! I love it, ticks respect the border!!! LMAO

I got Lyme in Ohio in the early 70's but the first DIAGNOSED case was 1983 ..... I can believe that. My CDC positive case was not reported by my doctor, so I contacted the CDC and they DIDN'T CARE. They said if I was unhappy with my doctor to find another one, but they didn't care that it went unreported.

--------------------
sixgoofykids.blogspot.com

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TerryK
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"Transplacental transmission may occur"
http://www.odh.ohio.gov/pdf/IDCM/lyme.pdf

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Ocean
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Oh Amy!!! I am soooooo sorry!!

That is absolutely appalling! I am so angry for you! I would have been devastated if my local paper hadn't done the article after interviewing me in April. Emotionally, it took a lot out of me to do the interview. I didn't realize how lucky I am that they actually printed the article and were very good about what they put in.

I will definitely comment for you guys [Mad]

[group hug]

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Ocean
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OK, Anyone else having problems commenting??? I signed up, but it won't validate, the page comes up, but it's just blank!

Maybe they've cut off signing people up since it is making them look bad, lol!?

Yes Sixgoofy...the ticks 'respecting' the border!!! Hilarious! No wonder there are so many people sick with FM, CFS, MS, ect in Ohio!!!! Course they CAN'T have Lyme Disease, because for some reason the ticks don't like Ohio deer!

OK, I'll try again in a little bit....just wanna put my 2 cents in.

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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MarsyNY
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Amy,

Lots of info and medical literature here:

http://www.lymeinfo.net/index.html

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Amy C
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MORE REPLIES:

TickedOff
06-24-09 2:05 AM

This is ***** poor coverage of a very serious disease that is in fact VERY prevalent in Northeast Ohio.

To say that it is anything but, is just unfair to those of us stuck with it. We are talking an epidemic here. I have been fighting it for over a year.

Oh and to those of you who suspect you may have Lyme disease AVOID Cleveland Clinic and University Hospital they will only call you crazy and pump you full of anti-depressants.

Then you will have a nightmare on your hands, as if you didn't before.

**********************************
marieb
06-24-09 2:45 AM

Ignorant, one-sided, outdated information, like that provided in your lyme disease article, is the reason I, and many others, don't receive home delivered newspapers any more.

**********************************
Selection10
06-24-09 3:04 AM

JEAN A. CORLISS, You should be ashamed to call yourself a reporter. Disgusting one-sided garbage.

I have lost all respect for the Tribune Chronicle to allow something like this to be posted. This is not journalism.

Lyme Disease is an epidemic in ALL US states, lyme has no border. Ticks are found throughout the United States and spread by migrating birds.

If you are infected you will suffer from an acute infection that can be cured if treated appropriately with 4-6 weeks of doxycycline, if not the infection spreads deep thoroughout the body literally "screwing" through the tissues, joints, brain, heart.

Lyme can change into cyst form which protects the bacteria from being killed from antibiotics, and there are borrelia biofilms which prove that lyme is a chronic infection once inadequitely treated... it required high dose antibiotics for up to a year, and many lyme patients need maintainence antibiotics to continue to feel better otherwise they spiral back into SEVERE illness.

Lyme Disease is called the 'great imitator' because it can mimic almost any chronic health condition including: Multiple Sclerosis, ALS, Alzheimers Disease, Parkinsons Disease, Fibromylagia, Chronic Fatigue Syndrome, Lupus, Anxiety, Depression, AD/HD, and the list is endless.

It can show up as any autoimmune disease, and almost any psychiatric disease. Lyme Disease is an epidemic ruining peoples lives.

It is important for everyone to watch, because as the number of people who contract lymes disease increases, so will the amount of people being misdiagnosed as one of these other chronic conditions.

It is very important for people to become aware of this tick-borne illness.

Watch Under Our Skin in theaters if you want to learn more about this serious illness.

Jean Corliss should be fired for writing this, I for sure will do my best to make that happen.

Disgusting what was written, absolutely terrible.

************************************
Peggy Sue
06-24-09 3:34 AM

Anger..about that article and how that journalist is going to get a lot of people in Ohio sick..when they don't have too!

Please..don't believe what she wrote..lymes is in every state..if they would've gave me a more accurate test..I might not be so sick now..

46 and there are days one of my sides have no feeling..having to crawl to go to the bathroom with parts in my brain that the pain curls me up into a ball!

There wasn't any work I couldn't do..if you knew me than and now..you would see what it will do..you don't have to go here!!

My GP is shocked, but now he has seen what chronic lymes can do..I don't want anyone here...or their family..or their friends to ever..ever..ever go threw this..

you don't have to if they would make the tests accurate..they ... Read More

don't because they don't want to lose tourism, but people..every state has it..every state..

*************************************
sara123
06-24-09 6:36 AM

This article is not only one-sided, but based on dated information. It shows a true lapse in journalistic integrity.

While the burden of proof should be on the author of this report, I would like to mention a few glaring counter points:

Even representatives of the CDC admit that the annual reported cases per year may be underestimated by ten fold.

The IDSA guidelines and suggestions for Lyme disease testing are referred to, without mention that these guidelines are up for a panel review this July.

Long-term antibiotic treatment is blanketed as dangerous, with no mention of the just-signed CT legislation protecting doctors who treat chronic Lyme disease.

Additionally, no Lyme disease patients were quoted or interviewed.

It comes across as both detached from human interest and suspicious to not include the experience and perspective of a patient.

The Tribune owes it to it's readers to correct for and amend this seemingly biased and hastily prepared report.

*********************************
emmanual
06-24-09 7:06 AM

Ummm. I think you forgot to do your research for this article.

This disease can become chronic and then requires the use of long term antibiotics.

This article contains information that will be harmful to the public.

**************************************
LibbyisTicked
06-24-09 11:46 AM

I am very, very angry to learn that if what "MissDiangnosedMarianne" is stating is true, than why on earth did the paper even send a reporter to interview her family and not include their opinions in the article?

The whole article looks suspicious.

Did you even bother to interview ILADS? Miss. Corliss, you really need to understand the full extent of harm that you could be causing by printing this one sided extremist view.

The Attorney General, just recently settled out of court with the IDSA for conflict of interests regarding the guidelines that are used for testing and treating Lyme Disease.

Why don't you do yourself a favor and read all about that and then read "Cure Unknown" and do a retraction of this article and write about the truths of Lyme Disease.

Perhaps then, you will learn to become a better journalist like Pam.

And, as far as long term antibiotics, tell me why it's okay to put a teenager on years of antibiotics for acne, but not okay to gi

I Would like to clarify my below (above) post to say I was referencing the Attorney General of the state of Connecticut(one of the most Lyme Endemic states in the US)....

There is a reason the IDSA has to put together a new panel....Think about it.

Thank goodness the Atty. General found these conflict of interests.

The truth is coming out and you would be prudent to write an apology to all of us with Lyme and to do a new piece on this story that is accurate and contains the ILADS viewpoint.

Keep in mind that ILADS are the ones that treat the vast majority of patients with Lyme, not the IDSA.

There is a reason that people seek out ILADS doctors after the treatment protocols that the IDSA recommends fails.

Also, many with Lyme wouldn't even get to the chronic point if the guidelines were rewritten.

The fact of the matter is that many get to the chronic point because they "DON'T" take antibiotics for a long enough period of time.

Research the life cycle of the spirochete that c

****************************************
CLDISHEREWHEREISOURCURE
06-24-09 11:53 AM

The reporter had the information from the interview and should have wrote the information she was given.

She should have researched Lyme disease too. She should redo the report using the information she had gotten.

Why did she waist the time of a family who is so sick only to leave out what they have been through with this disease.

It seems like the media wants to keep the truth about Lyme Disease out of the public eye. This will cause more misinformed people and more Chronic Lyme.

Chronicle has been one of the only news reporters to get right. See This is one of the best reports on Lyme Disease and how it is misdiagnosed.

It is too common and there are many of us.

Ticked Off *******vimeo****/2354218 Antibiotic treatment used to treat a fatal chronic infection does not kill, but Lyme Disease Does when left under or untreated.

I almost died because I was diened testing and treatment for years because of this view. Lyme

Fraud Against humanity ***********lymecryme****/rich_t

*************************************
Ocean1
06-24-09 12:32 PM

I hope that those reading this article do not take it too seriously. Many of the aforementioned 'facts' on Lyme in the article are anything but.

PA is one of the states with the highest numbers of cases of Lyme Disease, yet the ticks 'magically' respect the 'border'? Are Ohio deer not 'good enough' for the ticks??

How is it that our dogs in Ohio come down with Lyme Disease, but not the humans?

We recently visited our veterinarian and there was ample literature about Lyme Disease and methods of prevention...if there is no Lyme in Ohio, then why are these measures taken???

I was one who was told I had Chronic Fatigue Syndrome. Within a period of months, my body broke down.

I was a teen, had just 6 weeks before getting infected, competed in Columbus, Ohio in the state track meet.

Within months, my body became exhausted, I had episodes of sleep paralysis, all over body twitching, got the first of many panic attacks, my nervous system felt revved up.

12 years later, I found out it is Lyme Disease. YEARS wasted of my life!

Intermittent tachycardia episodes are diminishing, my eyes aren't as light sensitive, my energy is improving, all because of being properly diagnosed and treated.

If you are out there are are being diagnosed with CFS, FM, MS, Lupus, Parkinson's, ALS, among others, PLEASE find a Lyme Literate Medical Doctor and get Lyme Disease ruled out.

Ohio MD's know NOTHING of Lyme Disease. Your health is worth it!!!!

Lyme is NOT rare and it IS in Ohio...please write the interview that you did with the family in Ohio with Lyme and their struggles for an accurate depiction of what Lyme can do to you!

Thank-you

****************************************
gemofnj
06-24-09 12:41 PM

I am a lyme victim who contracted lyme disease in March of 2007 and was treated aggressively until January of 2009.

An I was very fortunate to have a doctor who treated me for 8 month+ with antibiotics. Long term term treatment is very important!!

I have mostly recovered, but I may still relapse as lyme is very difficult to eradicate!! I am considered 'in remission.'

Lyme is poorly diagnosed because of the lack of good testing for Borrelia and the coinfections that travel along with the lyme bacteria.

Therefore the diagnosis is always missed. Most folks do not always show a rash, I didnt!

It was not diagnosed for 6 months and it had entered my Central Nervous System by the time I could be treated.

Lyme is a cousin to syphillis and it can be deadly.

I developed a multitude of symptoms including musculoskeletal and neurological symptoms.

I now have permanent irregular heartbeat and rhythm.

In the beginning, my regular doctor only recommended 3-6 weeks of doxy and th

Do want REAL NEWS? Google Plumb Island and Lyme Disease! Is LYME being covered up?????

So many people are misdiagnosed!! There are hardly any Lyme Literate doctors because they are afraid of being sued.

Its almost like we have to seek out 'underground' doctors to get treatment.

Mainstream doctors deny it exists!!!

LYME IS EVERYWHERE. I am a lyme victim who contracted lyme disease in 2007 and was treated aggressively until January of 2009.

I was very fortunate to have a doctor who treated me for many months with antibiotics.

I have mostly recovered, but I may still relapse as lyme is very difficult to eradicate!!

I am considered 'in remission' and fearful it will lie dormant and return as dementia or Parkinsons.

It is a cousin to syphilis and can be deadly! It appears it can hide in healthy cells for years without being detected.

There are also the coinfections that travel along with the lyme bacteria which makes treatment even more difficult.

SOMEONE PLEASE LISTEN

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Amy C
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I tried to break the above replies up as best as I can. I did notice and so did BettyG that they don't take websites.

So if you post one they will do this to it

***lymenet***

Also I think they cut you off after so many words. I noticed some peoples replies were cut off.

You many want to double check yours after it posts and then add more if needed.

I still haven't come up with my own reply yet. I am not mad/upset right now!

But I wanted to thank everyone for your support!! It's more then I got from my own family!

Amy

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Amy C
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UH OH!! I can't seem to find the comments anymore on this articles site!! I also don't see a place to make comments! Maybe they took them down? Wow! That is messed up!!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

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Selection10
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Yeah they disabled comments on this article lol.

Seems like they didn't like our comments very much.

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Selection10
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You can send your comments via e-mail or phone to the editor if you wish, or one of the other contacts:

Frank Robinson 330.841.1600 ext. 735 [email protected]
( EDITOR )

Charles Jarvis 330.841.1600 [email protected]
(PUBLISHER)

Len Blose 330.841.1600 [email protected]
( GENERAL MANAGER)

Tony Simeone 330.841.1600 ext. 669 [email protected]
( WEBMASTER)

http://www.tribtoday.com/page/category.detail/nav/5056/Staff-Contacts.html

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METALLlC BLUE
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How do I comment on this? I don't see a place to do so.

--------------------
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.

E-mail: [email protected]

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Selection10
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comments were disabled because they weren't happy with what we wrote.

You can e-mail them at one of the e-mails I provided in my last post.

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Marianne
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WOW everyone, thank you for all of your support
and thank you for the staff contacts noted above as I have only just begun my retaliation!!

Here is a letter that I wrote to the "journalist" who interviewed our family. I emailed it to her and an editor there, but am going to send it to the contacts above.

Jean,
I don't even know what to say to you about your

Lyme Disease article. It's bad enough that

everything you wrote in there is false

information, but first you interviewed me and my

family, then totally disregarded all the

information I told you and gave you, totally

disregarded us and our plague, and went off on

your own tangent and published a bunch of crap

that people are going to read and believe!!! It

would be one thing (just another crap article) if

you came up with this idea on your own, but this

was in response to me contacting you. I TOLD you

that there was a huge cover-up about this disease

involving the CDC and the IDSA, and I TOLD you

there were 2 sides to this political story, and

yet you chose to take the OTHER side, interview

people who ascribe to the other side, and totally

blow off me, my family, and our story as

something other than credible. We are infuriated.

I can tell you that if it were you suffering with

this disease, or someone you love, you would

research it with all the gusto that we have, and

you would not publish the crap that you wrote.


Here is an 8 minute clip from a Gala for Under

Our Skin: listen to this and pay attention to

what Dr. Jemseck says about how Lyme disease

patients are victimized. He says that we are

victimized twice: once by the unending suffering

of the disease, and then secondly by the health

care system that ignores us, ridicules us, and

mocks us. To this I would like to add that my

family has been victimized a third time by you,

as a reporter, because what you did feels like a

huge slap in our faces, and another source of

mockery.

http://www.facebook.com/ext/share.php?sid=90923103228&h=pC8zh&u=aYX3R&ref=nf

I would like to make some corrections to your article:
Paragraph #1: "...the disease has become an

important public health problem in some areas of

the United States". Correction: Lyme disease is

prevalent in ALL 50 states.


Paragraph #4" "The good thing about the report is

that Lyme disease is not common in northeastern

Ohio or prevalent in the state of Ohio. "

Correction: This is HOGWASH. PER the CDC, 888

cases of Lyme disease were reported to the CDC

between 1990 - 2007; but, per the CDC, this

represents perhaps 10% of the actual cases (at

least), so at least 7,885 more people developed

Lyme disease and didn't know it (and probably

still don't know it---which is the REASON I

contacted you in the first place to do this

article!!!) The Leonard P. Blass you interviewed

ascribes to the CDC/IDSA and is regurgitating

what he has been taught by the other side of the

story, yet volumes of evidence and studies exist

that say (rightfully so) he is wrong, and you

decided that he was your credible source. Wow.



Paragraph #5: "There are 3 regions of the US

that have high incidences of confirmed Lyme

disease....New England, ....Westchester County in

NY,... and Martha's Vineyard, etc.."

ARE YOU KIDDING ME??? Tell that to the other

175,000 people every YEAR who live in all the

other states who are diagnosed with it.


Paragraph #6: "Wildlife Officer Jerrod Allison

of Ohio Division of Wildlife in Trumbull County

said that he has not seen any of the ticks that

can cause lyme disease, .... and he doesn't see a

lot of any other kinds of ticks...."

Correction: Most ticks that cause the most

severe disease are smaller than the period at the

end of this sentence and you rarely "see" them or

even know that you were bitten. I was recently

bitten by a dog tick and got Rocky Mountain

Spotted Fever, but I didn't see the tick or feel
the bite.
There is a place in Ohio where ticks are sent to

screen for Lyme disease carriers and they can

tell you that these ticks are in Ohio....EVERYWHERE.

Paragraph #9: "It's odd, but it appears the ticks

respect the state border. You just don't see a

lot of transmission here."

Correction: Oh my God...that is the MOST

ridiculous statement I have heard in a long time.

Please tell me how those ticks learned where the

state borders are. If it weren't for road signs,

I wouldn't even know where they were. Do they

read them??? You don't SEE a lot of transmission

here because everyone is misdiagnosed with

Chronic Fatigue Syndrome, Fibromyalgia, Lupus,

ALS, Alzheimers, Autism, Psychiatric disorders,

etc....It's there, NOONE is diagnosing it. I have

been misdiagnosed all of my life and so has my

family. I personally know 24 people in Ohio with

Lyme disease, and I have a small circle of

friends.

More corrections:
***A tick does not have to be attached for 48 to

72 hours to transmit Lyme. It can happen by just

handling an infected tick attached for 30

minutes.

***The CDC ELISA test is only 18% accurate in

finding Lyme disease. It only tests for 3 strains

of Borellia Burgdorferi, and in the US alone

there are 100 strains; 300 worldwide.


***Only the Western Blot can detect more strains

(bands) of Bb. However, the CDC does not do the

Western Blot unless the ELISA comes back suspect

for Lyme. Also, it depends on the lab where the

test is read as to how many bands are being

tested for. Igenex in California is currently

the most accurate.
***People have exactly 4 to 6 weeks from the

actual bite of a tick to be treated with 28 days

of antibiotics, followed by another 28 days if

needed. These are the ONLY people who will be

helped by this protocol. However, this rarely

happens because most doctors won't test for Lyme

(they tell their patients that Lyme doesn't exist

in their area); if they do test for Lyme, the

ELISA is used (18% accurate) and leads to false

negatives; they test too soon before antibodies

are present in the bloodstream. Here is a fact:

it takes 24 hours for the borellia burgdorferi to

get to the central nervous system from the time

of the bite. Once it gets there, and for sure

after the 4 to 6 week window, Lyme is

disseminated throughout the body, is chronic, and

is already in the central nervous system, the

heart, the brain, the spinal cord, the joints,

and everywhere else and it is there to stay.

Months, YEARS of treatment will be required to

budge it then.

***There is NO SUCH THING as "Post Lyme Disease

Syndrome"....that term was coined by the original

doctors who studied this disease; those with the

vested interests in saying it can be cured in 1

to 2 months. Lyme disease is Lyme disease and it

doesn't go away. I may get better with a lot of

treatment, but it doesn't go away...ever.


***Lyme disease CAN and IS passed on via blood

transfusions (not tested for Bb, so if the donor

is infected and doesn't know it, then it's passed

on), intrauterine (to say it isn't ignores years

and years of research on spontaneously aborted

fetuses that are studied--ALL tested positive for

Bb); sexually, etc. Bb is in all bodily

fluids...even tears.

Final note: I don't understand your agenda. Our

county would be better off if you never would've

published an article on Lyme disease if all you

were going to publish are all the well documented

falsehoods and lies. I have no agenda; only to

educate people so that they won't have to wonder

their entire lives why they and their children

are so sick like me and my family has, and the

hundreds of thousands of other people and

families just like us out there.

My mother always told me to never believe

everything you read in the paper, and now, for

sure, I know why.

I am terribly upset and disappointed in you.

MisDiagnosedMarianne


--------------------------------------------------------------------------------
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--------------------
3 Generations of Lyme & Co.

Posts: 4 | From Girard, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
bettyg
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marianne, BRILLIANT!! way to go ...

i'm so glad i asked amy to COPY ALL REPLIES HERE& FUTURE REPLIES IN NEWSPAPER ARTICLE since they disabled it.

did they leave past comments?

well done! [group hug] [kiss]

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AliG
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Any chance that the reporter plans to publish your interview at a later date to refute any of this?

[confused]

--------------------
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.

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Wonko
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I was disappointed to see the comments were taken down! It is good they are copied here.

If they saw the need to remove the comments, then they should also remove the inflammatory "article" (using the term very, very loosely).

I recall reading that Amy C had contacted her local paper as part of activism for Lyme Disease Awareness Month, making this situation all the more despicable.

I'm glad I got a chance to comment (as sara123) before the option was taken away.

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AliG
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Trib Today Staff Contacts

--------------------
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  |  IP: Logged | Report this post to a Moderator
Amy C
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AliG, I don't know because she won't return our calls or emails.

I assume she is trying to ignore us since she sided with the doctors instead of just simply publishing our story.

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
treepatrol
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Get everything that you said to them in the interview and reprint the facts but do it in a rival news paper!

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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gemofnj
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I cant believe they disabled the comments!
Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
AliG
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I'm with Treepatrol on this one.

I'm sure a rival reporter could make a good story out of this one.

I'd make several copies of the story. Your story, plus an intro stating your latest encounter with that newspaper's reporter.

I'd also send a copy to the paper's editor-in-chief and publisher with a letter asking whether they are aware/supportive of your experience with that reporter and give them a week to respond before pursuing this through every avenue possible. (Just in case this is only the reporter's doing, I'd give them a chance to redeem themselves.)

Send it certified mail, return receipt requested, signature of addressee required and marked confidential. That way you'll have some proof of what transpired and that you made them aware of it.

Do you have any means to document your interview with the reporter? Did you record it by any chance?

--------------------
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.

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Truthfinder
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Amy, just a suggestion.....

What about a very NICE letter to the Editor (with copies to the Manager and Publisher), asking if they might consider doing a second article about Lyme showing `the other side of the story'?

With the original article in hand, it would be easy to go almost line by line and refute each inaccurate quote made in the first article.

If you do it in the right way, the paper might welcome a chance to give the opposing viewpoint from `those in the trenches'.

I'd give them a sort of a `deadline' for deciding. Then, if they decline to do a second article, I think I'd buy space in the paper and pay to print my own article. It doesn't have to be a big article - just enough to let the public know the truth. I'm sure there are Lymies out there who would be happy to contribute a few $$ to the cause. I would. [Smile]

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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