posted
Long story short - my cousin (in-law) is having a TV news crew do a story about his struggle with lyme and how he was misdiagnosed and everything. He asked for me to join him since I know more about Lyme and have also been to like 20 doctors. So, incase they decide to include me - what should be my main focus (besides my story). My cousin said they might want some statistics or facts. Any ideas?
Keebler
Honored Contributor (25K+ posts)
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posted
- KISS - Keep it Super Simple. Find out how much space they are devoting to this, who else is being interviewed and when it is to run.
Likely a personal article with a sidebar (with practical information and links). This is the most important part - be sure they have allocated space.
Remember, this may be to share a personal journey but the bottom line is prevention for the readers. Always go back to that. What does the reader need to know about lyme?
What do you wish you'd know when you were first bitten or first became ill?
Keep emotions out of it - or at least contained. Stay as objective as possible, yet still authentic. Be yourself but your very best self if you start to hear any anger in your voice. I say that so that those with "scientific minds" would be as equally apt to read to the end as those who wear their hearts on their sleeves.
Take note of the ads in the paper? Who keeps the lights on?
Stick to the facts. Personal accounts are what the papers seem to want but you will likely be open for challenge once it is in print. So, back up whatever you say with solid citations. It's the only way a personal account will withstand possible criticism. You want this to be solid.
How much time to they have to research it and what is their knowledge base?
Just person-to-person, very conversational, ask them right up front before you say a word about the topic: tell me first, what do you know about lyme? Then you'll know where to begin.
Then, start with basics that a reader needs to know. How to remove a tick. The LDA will have that verbatim and it needs to come from an official group.
Find out how many dogs were diagnosed around there in recent years. This is actually really important to include. An interview with a LL DVM would also be good. It proves lyme is there.
I would be very careful in Kansas. The press there has not really understood the complexity of lyme (from media coverage at the trial a couple years ago. It was a sad example of journalism).
Google the reporter who is doing this interview so you know their style and breadth of work.
Also search the paper's archives for all articles on lyme.
Oh, and in conversation, always refer to this as an article, not a story, even if the reporter does. It's a fine line but "article" sounds better. "Story" can sound made up. [ I've never liked the use of the term "story" regarding objective news.]
* Realize that if you are identified in the article, the ramifications could be quite evasive regarding your personal life and your insurance coverage &/or your access to local doctors.
I'm not saying to run from this but I'd want to give it a couple weeks' thought before proceeding. It's not a decision to be taken lightly if you are to be identified. And, if you are there to help provide details, the reporter will be bound to identify you.
If there is time for them to actually study, you could just loan them printed materials, loan a few books or DVDs, etc.
* NEVER mention your own doctor's name unless that doctor has given express written permission and has a chance to talk with the reporter in person.
* Also, never mention by name doctors who have failed you. As hard as this may be, it's better to say "there are no doctors here who treat lyme" vs. a comment that could be construed as disparaging.
It's quite okay, a civic duty really, to say if you went to 20 doctors (including top specialists) and they all missed it. Just don't identify them personally or by their clinic.
Then, add where or how people can find a LLMD.
* Remember that NOTHING is EVER "off the record" - ever.
* If you are identified as a lyme patient, it could also affect current or future employment. Once the newspaper's web version hits the screen, it will be accessible forever and ever. That's important to know.
* It's best to keep children and teens' names out (or use a nickname) and, if detailed, be vague about identifying facts such as age, school, their schedule, etc.
* If photos of youths are taken, obscure the face and hair style so they won't be singled out in public. That's a terrible feeling. Even if everyone is compassionate, it's often best to shield the identity of youths for various reasons.
* Don't take any photos identifying your house or your car or your street number.
See if you can review before this hits print.
It's best to offer them materials from the LDA. Quotes from experts need to back up whatever you say.
Share links for the documentary "Under our Skin" and "Cure Unknown"
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
. . . .
- Full article at link above.
===============
There was a thread in the past ten days about this. There were some good replies and links.
-
[ 05-23-2010, 12:52 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi - you can say Lyme disease is the fastest growing vector-borne illness in the country, transmitted by ticks, insects and people via fluids and tissues. Lyme can be transmitted congenitally and through breast feeding.
Besides being in ticks, which are arachnoids, Lyme bacteria has been found in at least 23 insects, including biting flies, stinging flies, fleas, sand fleas, mites, mosquitos, etc.
Definitely make the point that it's a clinical diagnosis, as tests cannot always pick it up.
List the conditions it mimics, since listeners may have some of them and even recognize themselves. Say it is inflamational, attacking the nerves and soft tissues. Say its symptoms can show up immediately or take years. That not everyone gets a bull's eye rash.
That there are 100 strains in this country and 300 strains worldwide, that it can present as chronic fatigue, fibromyalgia, arthritis, lupus, irritable bowel syndrome, autism, multiple sclerosis, alzheimer's, ALS, Parkinson's - all of these and more can be a sign of Lyme.
Also mention the co-infections briefly and the symptoms they cause: babesia (night sweats and chills, fatigue), bartonella (swollen lymph nodes, red stretch marks, sore feet, etc), ehrlichia (headaches, high fever, etc). This so if listeners have these symptoms, it might help them recognize what's going on.
Give a reference to your state site/national site, like here, for more info/discussion/support groups/doctor referrals.
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Ann-OH
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posted
Good for you, Brandi!
You got a lot of good tips. Please tell them dogs and other animals are at risk. Somehow people take it much more seriously when they hear pets are involved.
Please let us know when and where the TV piece will be shown.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I realize that when I wrote by post above I was thinking "newspaper" - so some of the terms are out of synch.
One more thought for privacy matters, it's best not to show a bunch of pill bottles and, especially, don't mention pain pills. There are those who scout for pain meds (for themselves or to resell on the street) and you want to avoid a potential break in.
This may sound too cautious but there have been people followed home from the pharmacy for pain meds - and cancer patients are told not to tell anyone if they start morphine as there have been home burglaries for that. Just best not to mention it.
And that is partly the reason I suggested not to have the full front of your house or car, or street address shown in photos or video footage that would be fully identifiable.
Thanks for doing this. Although I've posted a lot of cautions and considerations and you still may want to decline being on camera or quoted yourself - either way - thanks for sharing important information so that others can get educated and either prevent this or get the care they need, faster and with less medical abuse spewed at them.
Good luck. -
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posted
Thanks everyone...well, it turned out good. They interviewed my cousin and got his full story. There were other Lyme patients there also...so by the time it was my turn to tell my story, the news crew said they had enough footage. I was kind of relieved cause I was nervous. But the good news is, I gave the guy some good info, facts and webistes, plus Under Our Skin website. It will be on channel 10 news in wichita kansas at 5 if anyone is interested.
randibear
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posted
don't attack doctors or their treatment.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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- Excellent for the time alloted. Both the reporter and Det. Reichenberger come across very well in the video.
I can't believe they interviewed only this morning and it's complete. It will be interesting to see the backlash from doctors tomorrow. The way it was reported leaves no room for debate. It happened.
Brandimc, thanks for your work on this and also tell your cousin "Thank you" for sharing his experience. This will help others. And, my guess is that there are thousand
This station was courageous to report this. It is very rare that a news group reports the truth about lyme and the experiences of patients.
Usually, after a patient interview, they add on an IDSA ID doctor's quote about it really not being a big deal at all. I was so relieved that did not happen here.
I do hope they post some links, though. No one will know what to do or where to turn. In the comments the reporter says he intends to do some follow up to this. Hope it has the next important piece then.
WICHITA MAN STRUGGLES THROUGH LYME DISEASE DISASTER
Sunday, May 23, 2010
A Wichita man is making his fight for life public in order to raise awareness of lyme disease. Lyme disease is spread through ticks, but many doctors don't recognize it as a problem in this part of the country.
His name is Bob Reichenberger. Right now, Reichenberger is an active police detective. He is fit and in-shape, but the last year of his life hasn't been so pleasant.
"It was about the end of June, '09," Reichenberger explained. "I was out in pasture and I noticed on the way home that I had a couple ticks on me."
Within a few weeks, Reichenberger began noticing tremors in his chest and arms, as well as muscle spasms. Then, intense pain in his feet.
"I'm healthy, I never have to go to the doctor," he said. "I just thought it had something to do with being a 40 year-old guy who's active and physical. I've had some sports injuries, so I blamed it on that."
But this story isn't about ticks or Bob's lyme disease. The story is that after months of suffering to the point the disease nearly killed him, eight doctors refused to test him for Lyme.
Instead, Reichenberger was told he was suffering from severe depression. He was even accused of being a pill seeker. By November, Reichenberger went to his doctor and told him he thought he was dying.
"They were turning me away and I felt helpless, so I started crying and she laughed at me and walks off," said Reichenberger as began to get emotional. "At that point, I was so hopeless I couldn't be angry. I walked out to my car and cried for about half hour."
In December, Reichenberger had a seizure at work and collapsed. He was admitted to the hospital. That's when he started pulling his own medical records and discovered his doctors wrote that he needed to seek psychiatric and behavioral help. He was appalled. The tougher struggle, however, was watching his children suffer.
"They were starting to have emotional issues. My 18 year-old would literally have to carry me to bed at night," Reichenberger said.
After a short pause to calm his emotions, he continued.
"I couldn't stand to be in the dark room, so I would have him help me out in the front room so I could be with the family unit, but I felt being around them, I was bringing them down."
The infection had spread to his heart and lungs. Reichenberger was in the fatal stages of the disease. One day in December, he fell to the floor in his own living room.
"At this point, I'm thankful that it's over," he said. "I love my family with all my heart, but I was glad it was finally over and I was just waiting for everything to go dark and to be finished."
Reichenberger was ready to die. He told his wife not to call an ambulance. He didn't want any more doctors. He didn't want help from the people who didn't believe him. He wanted to pass away and allow his family to move on.
Fortunately, Reichenberger survived that nearly fatal episode. During his research, he discovered an LLMD - or Lyme Literate Medical Doctor - in Missouri. He went there and finally convinced someone to give him a Lyme Disease test. He was finally diagnosed.
Today, Bob Reichenberger is a police detective in Wichita. He is mostly healthy and pain free now that he is getting the proper antibiotics to slowly kill the bacteria that nearly killed him.
Reichenberger has since found other people who live within walking distance of him who have gone through the same ordeal... a problem he says is unacceptable.
posted
Keebler, Ive been talking to the reporter after the segment was on TV. I told him the only part I wish he wouldn't have cut was the part where my cousin had 2 negative lyme tests and how tests are not accurate. Cause now people might run to their doctors to get a lyme test, only for it to come back negative. He agreed that this piece is so much bigger than he thought, so he is working to do a bigger 3 part series on it, and he wants to interview a LLMD. I told him to stay away from Infectious disease doctors cause they will say...well you know. Anyway, he is really interested in doing a longer piece on it...so I'll keep you posted. He said he might use my story too.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Brandi,
Yeah, I saw your cousin's comment to the reporter about the confusing wording.
I tried to post about a half dozen links to ILADS, LDA, etc. and my post never made it onto the comment page. Maybe because there were links. Somehow, I hope they print out some links.
I sure hope the reporter does not plan to shoot film at 11 am and have it all edited to air at 5 pm. It really requires a lot of time to get this right.
I really feel for the reporters who are not given time to investigate and study the material that they interpret in 90 minute segments.
Glad to hear that he wants to interview a LLMD. Wonder if the producers from "Under Our Skin" could come around, someone. Even if on SKYPE ? Good luck with all this and do keep us posted. -
[ 05-24-2010, 05:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Good news, the reporter is doing another segment on the news. This is his email to me:
I am going to interview Dr. **** tomorrow. I want to focus the story on LD testing and how it isn't accurate here. Since you guys are obviously more familiar with this subject than me, I want to ask you to come up with some questions to ask him. The interview is tomorrow afternoon at his office. I'm planning on having a followup story on the 10:00 news tomorrow.
Thanks so much for your help, Jared
Can you guys help me come up with some questions. Maybe some stats about accuracy....
Keebler
Honored Contributor (25K+ posts)
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posted
- You'd probably have to first hear what the doctor has to say. I can't imagine that it will be good as there appear to be no LLMDs there, so -what - he's just going to interview any doctor?
You obviously have that doctor's name, so you'd want to see if he's written anything about lyme and what you might expect his stance to be.
You might call his office now and ask (as any new patient might) if the doctor tests / treats lyme. I'm not saying to be deceptive but you might just want to use your middle name to be somewhat anonymous. You'd need to know how any one would be received there were they to have a question about lyme.
Beyond that, just pull from ILADS &/or the LDA. It packs so much more power when you can say "According to . . . . "
See if you can get the canine figures in your area for lyme. If the MD says there is no lyme, the dog figures can put that into perspective. -
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Keebler
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- With thanks to Robin123 for finding this at CanLyme:
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
=================
The reporter should see the video before he edits your segment. But, again, interviewing, editing and then airing all in the same day is not always good journalism for such intricate issues.
Might there be ten minutes in the MD interview for everyone to see this? Can you take these links for the MD?
I sure wish you a very calm and centered manner tomorrow.
---------------
Thanks to PineLady for finding this link.
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section) -
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Keebler
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- The point of bringing in the dogs is that if the MD says there is no lyme there - or in dogs treatment is short term, you'll know how to reply to that. Short term treatment is failing dogs, too (second link below). -----------------
Half of U.S. states report 500-plus Lyme positive dogs
Apr 1, 2010
DVM NEWSMAGAZINE
. . . According to cumulative statistics recently released by IDEXX Laboratories, Inc., nearly half the states (23) in the United States reported 500-plus Lyme-positive dogs between 2001 and July 2009.
No state is free from the disease.
- Full article at link above.
[sadly, while the tracking of these numbers show one kind of awareness, their stats for how long a tick needs to be attached are way off]
=================
I tried to find some numbers for Kansas but came up empty at a site where I expected at least a mention.
The Kansas Veterinary Medical Association Search page:
By: Sarah Smith, Park Rapids Enterprise, Worthington Daily Globe (Minnesota)
PARK RAPIDS - The tick season has arrived in the northland with warm weather, but tick-borne diseases may actually be remnants of 2009, especially in dogs.
In the past week, Dr. Mia Long, owner of Ark Animal Hospital outside of Park Rapids, has seen two patients on an emergency basis with tick borne diseases (TBD) caused by bites that likely occurred last fall.
Trooper John, an 81/2-year old English Springer spaniel, started limping on his hind leg March 22, said owner David Allman of Menahga. By the next night he was critically ill.
``He couldn't even get up,'' Allman recalled. Trooper was brought to Long, who confirmed dual tick borne diseases of Lyme and Anaplasmosis, what she calls a ``co-infection.'' . . . .
Lyme, for dogs, can be a chronic relapsing disease. It's unknown if Anaplasmosis is similarly reoccurring.
These recurrences of Lyme can be fatal in about 25 percent of the canine population, Long said, especially in golden retrievers and Labrador retrievers.
It will be six months before Trooper John's long-term prognosis is clear.
-- Full article at link above. -
[ 05-26-2010, 06:27 PM: Message edited by: Keebler ]
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posted
Keebler - well, I looked up the doctors name and found out he is an infectious disease doctor.... OH NOOOOO!!!! Ugh,...I will email the reporter and tell him to please get a second opinion by an LLMD. But I think this might totally go the wrong way. Im so disappointed and worried. They will probably say it is "hard to get, easy to cure" BLAH BLAH BLAH.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, basically, you just have to wait to see how this plays out.
The reporter asked you for questions and he may ask some of his own but he will have nothing to stand on for the ID doctor's replies. Without background, he won't know what else to ask or how to zero in on a myth, say, about how long a tick need be attached before infection.
Is this one of the doctors whom your cousin consulted and was pushed away? If so - depending on how steady the reporter is - the question may be raised "Why did that happen for him?" "How many more are being turned away due to the wrong tests?"
But "right" and "wrong" will come down IDSA and ILADS.
The reporter, while wanting to do a good job, does not have the experience or the time - this takes more time than he is being alloted.
Can someone from the LDA help you? Do they have a media person?
Hopefully, the ID doctor's interview may go okay. But, since your cousin did not receive proper care it would seem that the ID doctors in your city not only dropped the ball, they stuck a dagger in it. I don't imagine an ID doctor is going to step up and stay that his colleagues failed &/or things will change.
But, in the end, it's about educating others. Dialogue may not go the way you hope but it will, at least, open the door for people to learn more on their own.
Good luck, and please let us know how this turns out.
==============
I sure hope the reporter puts some links on the website. And if the ID doctor insists on the IDSA link, then ILADS needs to go there, too.
What about links to support groups. Readers/viewers need to know who they're going to call first.
Tick removal details should also be a sidebar with this article.
So, even if the ID doctor counters everything you say, prevention links can save lives &/or time. -
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Keebler
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We brought you the story of Bob Reichenberger earlier this week. Today, we're going deeper into the subject by taking a look into the issue of testing for the disease.
May 27, 2010
We brought you the story earlier this week of Bob Reichenberger and his nearly fatal struggle with Lyme Disease. Today, we're going deeper into the subject by taking a look into the issue of testing for the disease.
Since out story last weekend, we've heard from numerous people who say they can't get an accurate Lyme Disease test. They all have the symptoms. Their lives have been changed drastically for the worse and some have nearly died, as in the case of a Wichita Police detective
"Frankly, the biggest problem I have as an infectious disease specialist," explained Doctor Tom Moore, M.D., " Is people who come into my office with symptoms that are due to other illnesses and they're absolutely convinced that they have Lyme Disease because they've been on the Internet and their symptoms match."
There are dozens of Lyme Disease tests available that have been FDA approved. Dr. Moore says symptoms of Lyme are similar to other illnesses, making the disease very hard to diagnose.
"There's so much interest and frankly, money, involved in Lyme Disease treatment that there are a variety of labs, one of which is in California, that specializes in a test which is not FDA approved," said Moore.
"It has not been subjected to rigorous peer review to determine whether it's actually accurate and they tell people they have Lyme Disease based on the flimsiest of data."
But don't tell that to Bob Reichenberger, who nearly died because he couldn't get an accurate Lyme Disease diagnosis. When he sought out that lab in California, he finally got a positive Lyme test and began treatment with a doctor in Missouri.
"Finally, by the middle of February, I felt good again," Reichenberger said. "I didn't feel perfect, but I felt good again. I felt like myself. Now it's been almost a year since I was first infected with it and I feel fantastic now."
Doctor Moore, however, claims tests used in this area are reasonably accurate and work just fine.
"Physicians in Wichita are capable of diagnosing and treating Lyme Disease... true Lyme Disease," he said. "The problem is that we will get patients who come in and are convinced they have Lyme Disease. The physician looks at the data and decides that is not the case and therein lies the problem."
Moore also says that testing alone isn't enough. Results must be combined with symptoms such as a bullseye rash at the site of the tick bite.
If you think you might be suffering from Lyme Disease, check out the links we have provided below this article. You can also read Bob Reichenberger's amazing story of survival by clicking on the related links below.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Overall, the reporter did his job. He reported what the doctor said and emphasized that many people have contacted him. It was good to replay a bit of the video from the other day.
There's not much that can be done about the doctor's smirk when talking about patients and his condescending attitude that patients aren't smart enough to learn about what might be destroying their own bodies. His biggest job is to talk patients OUT of lyme ? Oh, my.
Still, it's important to hear that from the doctor himself. Then people who may have lyme know to stay far away from him.
However, the lies about Igenex need to be corrected.
* First, the FDA does not license testing laboratories. It's other licensing agencies that do so.
* "rigorous peer review" ? Term is out of place here.
Igenex has all their certification and licenses current. A correction to the doctor's disparaging statement should be made on air. It will be tricky, of course, and will not likely happen.
But this now seems like a legal matter and Igenex has every right to sue both the doctor and the station under libel laws.
For a look at all the licenses, see left hand menu and just clink onto ``LICENSES''
At that page, you can download current licenses and certifications:
California CAP Participation CLIA Florida Maryland New York Pennsylvania
These Licenses are in PDF format, which allows for printing a document nearly identical to its original form. The program for reading and printing is called Acrobat� Reader. It is easy to use and may be downloaded by clicking [at link] -
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Keebler
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- Brandi,
I can imagine that you are disappointed in this. However, it's really best that people could really have the experience with the TV interview rather than go in to that doctor in person.
He's discounting the severity and frequency of lyme is truly beyond unfortunate and one person who commented after the article was bad mouthing Dr. C so they really didn't seem to grasp the importance.
Still, these two segments have informed people to the situation. Doctors are not likely to change and with that guy's attitude, I'd stay far away. Hope others will, too.
thanks for your work in getting information out there. It's just so sad to have so much ignorance from the ID doctor realm. But it showed exactly what you guys said.
You might suggest to the reporter to air a correction so that they won't be named in a libel suit. The station's attorney should be consulted. Most often, if a correction is aired/published as soon as the error is brought to light, that will help. The station's attorney may want to contact Igenex directly.
I'm speaking here solely about the Igenex quote. That is fact that can disprove the doctor's statement. Clear facts.
Other things the doctor said can be disputed but that can take a very long time. The Igenex defamation is a matter of clear fact that requires prompt attention - it should actually be a simple correction but it has to be done within certain legal guidelines. -
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Keebler
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- Now, after all that, a thank you to the reporter. From where he stood, coming into this with no background in the complex matter lyme, it was a good job. In fact, although I wish the doctor could have been questioned by a ILADS LLMD, there really are very few reporters who can do this topic justice.
He stood up by coming back with the fact that a rash is not always present and that there were patients that disputed what the doctor said. That took courage.
And, great . . . I see four good links right below the article. That will help tremendously. -
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