Topic: Please help-Newspaper is coming for story about me and Lyme!
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi guys, Sorry I posted this in Medical, I just really need feedback because I want to get this right!
I sent letters to 2 papers (actually I mailed the letter just yesterday!) and one (the larger one) contacted me just now and they want to come on Thursday to write a story about me and Lyme with pictures, ect. They asked for pictures of when I was first sick as well.
I need to know EXACTLY what to tell them about Lyme.
I am especially concerned about testing, I want to make it CLEAR to the readers that the Elisa is NOT a good test. Do I mention Igenex???
Please tell me what I need to tell them, this could potentially help a lot of people in this area with misdiagnosed diseases.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Get out the ILADS guidelines, and Dr B's guidelines...page 7 of Dr B's tells you about testing and how 2 tier testing is not recommended.
I would mention Igenex lab for the western blot.
Tell them about your struggle for diagnosis, treatment and just be honest.
Others will chime in I'm sure.
-------------------- 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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glm1111
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Member # 16556
posted
That's great!! Tell them also everything that it can be misdiagnosed as.
Such as...
chronic fatigue,
fibromyalgia,
als,
ms,
parkinsons,
rheumatoid arthritis,
alzheimers,
autism etc.
Good Luck with this!!!
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Ocean
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Member # 3496
posted
Thanks Dekrator and Gael!
I'm going to be printing out a bunch of info tomorrow I'm sure. I just hope I have some energy tomorrow (unlike today) that I can clean some more of my house, it's been getting done in steps, one room at a time!
I am going to mention Lyme.net, I hope they print it in the paper! It should be a decent-sized article if they want to take pictures of me. I just don't want to mess this up by saying the wrong thing.
My intent is to try to get people to re-evaluate their own chronic illness, like my neighbor's daughter in law who has had FM for 8 years! My neighbor at age 71 (DIL is 42) has to go over and clean her house for her sometimes while DIL lays in bed. And yes I let neighbor borrow UOS, not sure if she had DIL watch it yet. Maybe if she sees this in the paper she will.
If you have any other suggestions, please let me know. I will be compiling info tomorrow for this reporter (she sounded really nice).
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Ocean
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Member # 3496
posted
you are right Lymetoo, I never noticed there is no www! Thanks for pointing that out, I am sure I would have put www. I will bring that to their attention to make sure they do not add the www on.
Yes, I will definitely mention Igenex. I need to find something about Lyme being a clinical diagnosis and standard blood tests missing a lot of the cases.
I don't want this to backfire, have people go to their PCP and get an Elisa and be told it's not Lyme, ya know?? I need to just pray about this and for the wisdom to say what needs to be said.
posted
Wow! This is awesome! Ohio needs this! You go girl! What paper is this?
My mom and I want to do this. What did you say in your letter?
Make a list of the most important key points that you want to make. Then write down what you want to say about them. Try to keep them simple and to the point so you can fit them all in. I know that's hard with so much info.
I know it's not the same but I have done a few presentations about Lyme recently and I was so nervous getting stuff together. Had only 30 minutes to talk and a lot to say!
Too bad you don't have more time to get stuff together. Best of luck!!
-------------------- 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
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks Amy!
Good job for doing presentations!!! I want to do that too, I need some tips about that as well!
I will pm you my letter, or you can see it in the general, I think it's something like, "My letter to 2 local papers about Lyme" Or something like that.
I hope you and your mom do this. I couldn't believe that I put it in the mail just yesterday and they called today after getting it today! The fact that she said her boss wants it in this Sunday paper is a big deal, people are WAY more likely to read the Sunday paper,
I hope the word can get out, I just want people to see the right doctors/get the right tests. I want to reiterate to her that Lyme is more than just arthritis, I don't have arthritis symptoms (save for 2 episodes last year of swollen knee joint).
posted
Congrats - how exciting! You could say a million things to the public - I guess you will have to pick and choose what you feel is most important to get across - there are so many facets to this illness
This may have already been covered above, but I think an important point is :
the idea if someone thinks they may have Lyme and then gets a negative test from their PCP (like a Elisa or Western Blot etc) - it does not mean they do not have Lyme, rather the testing is flawed.
actually that whole link brings up many important facts the public should know!
Anyway, thanks so much for putting yourself out there for us
peace, Abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Pinelady
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Member # 18524
posted
You know it would take hours to tell them
everything. So just do what you can, and know
whatever you accomplish, it was good.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
OCEAN ROCKS~~ I'M SO PROUD OF YOU!!
my thoughts..repeating some of the above:
BASIC SYMPTOMS and hand them printouts...i'll try to find melanie's broken down by body parts; very impressive!! *****************************************
MELANIE REBER'S 186 LIST OF SYMPTOMS BY REGION AREA:
1. yes, print out dr. burrascano's 08 lyme guidelines.
2. yes, mention igenex diagnostic lab in palo alto, calif.
www.igenex.com and call them 1.800.832.3200 for current prices & ordering a WESTERN BLOT IGM AND IGG blood test. Have blood drawn only Mon. or Tues. to be sent by Fed Express overnight.
3. refer them to official sites: *********************************
4. HR 1179 is our house bill in congress for our lyme and tick-borne bill; and has been there in congress for 10 plus years. senate version not assigned a no. yet this year.
print out the bill; found in activism.
mention if your federal senators and house reps are CO-SPONSORS of it or not!!
you might mention how the IDSA, Infectious Disease Society of America aka infectious drs. treat only from 1 pill up to 3 wks. max, and don't believe in chronic lyme.
IDSA is fighting and lobbying hard the energy sub-committee to NOT SCHEDULE our lyme bill to be discussed!! They have paid big bucks.
see my link of my combo 2 LDA brochures with extra stuff added; print it off.
Betty G's LYME/TICK BROCHURE with 2 LDA brochures combined together plus other stuff from Betty including:
lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
prints out to 9 pages 2 columns per page!
i also used on page 10 the front/back side of TICK CARD that lda has!! very helpful!
9. do you have a TICK CARD showing actual sizes of the 4 ?? or perhaps you can print it off from LDA site.
10. www.lymememorial.org of all those who have died from lyme and co-infections. more state statistics can be found there.
11. under our skin dvd; www.underourskin.org where you can view the trailer, see screening dates & locations, & purchase the dvd
12. OUR HEALTH INSURANCE COMPANIES NOT PAYING FOR OUR LYME APPOINTMENTS, TREATMENTS, LABS, MEDS, ETC. work this in earlier... it's just an after thought before i hit the send button.
we've lost: our jobs, health insurance, spouses, custody of kids, family/friends' support, homes, bankruptcy, and the ultimate loss ... SUICIDE since they don't have quality of life, in too much pain, and nothing to live for being HOMELSSS!
ocean, at the moment, this is what stands out in my mind to cover! enjoy the lymelight!! i did this 5 yrs. ago this august; went well.
as a RN, you are already well-versed; and as a patient...you understand it all.
let us know how it goes, and the direct link of the article when it comes out so we can send them online feedback comments.
OCEAN ROCKS and will now roll in lyme light!
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jt345
Unregistered
posted
Hi Ocean
This is great,way too go to get the true story of lyme out there.
But one thing is missing LOL. This could turn into a "andy of Mayberry momount".
Do You want any of use too stop over while the reporter is there. Let's see,I could be Andy(hey it's my idea)
BettyG could be Aunt Bee,tincup could be,let's see,maybe Claria, Maddog could do a Good Gobber. Lymetoo could be the School teacher ,(oh what was Her name) Ellen,that's right.
Well too think about My spot maybe Earnest T Bass LOL or Barney Hey We could have a great time . How bout it ,want a handful of lymeies too drop by so We can get Our picture in the paper too. LOL Hey it could be a great time ,of course We would need someone too be Flyode,and Ottis. LOL
You know I am only kidding. I think it is great that You are getting the real story out there. My tip of My hat to You Great Job!
I will be thinking and praying everything will come off,without any bumps in the road. Again ,thanks and great job!!!
posted
Honesty is the best policy.
Posts: 743 | From New York | Registered: Apr 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Abby,
Yes my main concern is that they put the testing part into the paper. I need to find the link for the CDC website where they no longer recommend the ELISA necessarily before the Western Blot.
Pinelady, I started writing stuff down today and was on point #20 and was like, I have got to just pick and choose a FEW! You are right!
Bettyg,
Awww... thanks. I'm a pretty quiet person and it's kind of scary putting myself out there, BUT...I wish I had read an article about how LD can be misdiagnosed and cause so many of the symptoms I was having! Who knows, I could have had a much better quality of life, I may have been able to 'live' in my 20's! I want to see if they will print my e-mail address (I'm making a new one, not using my personal one) for people with questions.
I was hoping they would do the article next week as I wanted to find out where I may be able to hold an informational meeting about Lyme.
Thank you for all of the links, esp that tick card, that's BRILLANT! My mom had to educate her PCP about how small a deer tick is (my mom had a beautiful Bull's eye rash on her leg). Doc argued with her, then looked it up in her medical book and said you're right, take these antibiotics immediately! She has not had any signs of illness in the 4 years since it happened either.
Appleseed, Hehehe!! You are right though, many here feel like family because you all understand how I feel. When I posted on LN I was floored by how many others were like, "yup, I get that".
John S =)
Thank you all for your support. I'm going to try to vacuum my living room where they will be tomorrow, and then compile everything I need for them. Think I can talk them out of a picture of me and ask for more writing room???
I wish had some wisdom to add, but I think everyone has covered it.
Good luck tomorrow!
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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bettyg
Unregistered
posted
ocean, they had 2 photos of the 2 of us; separately paper would NOT do a story; together we got it done!!
also, we had 2 PART series; our stories first and then more on symptoms, web sites, treatment, the mouse/bacteria/ & the tick; etc.
perhaps they could show a smaller CLOSEUP photo of you and have more text.
one thing i learned is ... they will NOT allow you to preview it for accuracy!! so be prepared to write a follow-up of corrections to the article they wrote. mine were NOT published in the newspaper, but ONLINE.
my story even hit texas, etc; 1 man called me about the article and told hubby what a good job i had done and my actual quotes!! i was on errands so didn't get to talk to whoever.
GLAD TO SEE YOU WILL HAVE A "MADE UP" EMAIL for Q/A !! this saves your privacy.
my best to you....
appleseed, i'd be happy to play aunt bea!! i loved that show too. xox
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You know what to do. You have medical knowledge, you are smart. Tell your story, back it up with facts. Reporters love facts.
Let us know when the story will be published. I'm dying to read it.
Again, You go girl Bill
Posts: 11 | From COLUMBUS, OHIO | Registered: Feb 2009
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Ocean
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Member # 3496
posted
Thanks again guys!
I figured I probably couldn't proofread it...that stinks, but I understand. I'm glad your story 'got around' Betty. That's what I am hoping, maybe to get one person with a questionable 'other' diagnosis to get tested, see LLMD, ect.
Bill, thanks for the encouragement, the reporter said her boss wants it in the paper THIS SUNDAY, May 3. I'll post a link when it comes out.
posted
I was highlighted in an article two years ago, so
Make sure they do not mention the street you live on, or your address if possible.
All my neighbors got angry with me and my other neighbors in the article, as people believed that our home values went down, and people would not want to buy a house in a lyme infested neighborhood.
People were very angry with me. People still talk about our street as the lyme street, when in fact, we all got tested because we could afford it, and wanted to be proactive. People do not catch the fact that lyme is not just in one area of town! It's everywhere!
Also, people goggled me from all over the state and wanted info about lyme. It became overwhelming to handle!
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bettyg
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posted
ocean, it would be wise to OVER EMPHASE YOU ARE SICK and have LIMITED ENERGY.
they should use ilads or lda web sites to go to for basic information that is compiled there...
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Ocean
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Member # 3496
posted
Wow Lymeparfait, that is strange, I guess I wouldn't have thought about the home value issue, although I had Lyme way before we moved here (have only lived here 2.5 years). Thank you for the heads up about getting a lot of questions. I will try to direct them to LN, so if we get a swarm of newbies from Ohio, I guess we'll know why =)
And I was going to make sure they don't post my address too, you never know what crazies are out there!
Bettyg, good idea. I want to make sure they post the ILADS site too, it's a great one.
I'm still nervous, but I think it will go well, the reporter seemed really nice and she's bringing an 'understudy' with her. She admitted she knows next to nothing about Lyme and said that my letter actually scared her. But I think that's good, if I'd had any idea what my life was gonna turn into long ago, I would have been terrified.
Sigh..I just hope they don't find some doctor refuting ILADS info or something. I don't think they will have time though since it will have to be in by Saturday.
I'll let ya know how it goes! Thanks again everyone!
Ocean
ps...do you think make up and non-pj's for pictures??? I was thinking if I wore jeans and a decent shirt and put on make up that no one would recognize me anyhow since I always look like a scrub in public, lol!
quote:Originally posted by Ocean: [QB] you are right Lymetoo, I never noticed there is no www! Thanks for pointing that out, I am sure I would have put www. I will bring that to their attention to make sure they do not add the www on.
Yes, http//flash.lymenet.org
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sammy
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Member # 13952
posted
Good luck Ocean!
Thank you for speaking out and sharing your story. Our neighbors need to learn more about Lyme and recognize that they too are at risk.
Posts: 5237 | From here | Registered: Nov 2007
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nenet
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Member # 13174
posted
Ocean, here are some ideas if you are still looking for them, though I am probably too late.
I would make sure to tell them that even Western Blot tests miss MANY proven cases of Lyme (cases that were proven with DNA tests were tested via Western Blot and those WB tests missed them, showing them as negative).
People need to understand that just going to their regular Doctor or any non Lyme-specializing Doctor, and getting a Western Blot, is not going to tell them if they have Lyme.
It needs to be made clear that they need a clinical diagnosis from a specialist, and they also need to be evaluated for other co-infections (something regular doctors don't know anything about wither) which can be very dangerous as well. One paper you can cite regarding the poor sensitivity of the ELISA and WB testing is a recent Johns Hopkins study that determined that the 2-tier testing called for in the IDSA guidelines misses 75% of DNA-proven cases of Lyme disease!
"The SPECT scan above shows the brain of a Lyme patient before and after treatment with IV antibiotics. The healthy orange areas of the brain are receiving adequate blood flow. The black and blue areas are starved for oxygen due to inflammation caused by the Lyme bacteria. (Photo courtesy of Dr. Robert C. Bransfield, MD, and Psychiatric Times.)
A person with that much of their brain out of commission may exhibit any number of neurological symptoms, including depression, rages, seizures, and even hallucinations."
If they can get permission to republish that picture, it is a very striking image and can hit home just how devastating this disease can be neurologically, past the aches, arthritis pains, and fatigue that most people think of when they hear of Lyme Disease.
Another point is that you have to wait at least 6 weeks after a bite to do a Lyme Western Blot, because your body won't start making antibodies at least until that point. So if you have been bitten by a tick it is best to get on ILADS guideline doses of antibiotics for the prescribed length of treatment time, and get evaluated by an ILADS LLMD. Testing (after the 6+ weeks) is only really useful as possibly confirmatory for your Insurance provider's coverage rules - it is not to be used to rule out Lyme.
ALSO, one thing that gets misreported all the time in news stories - less than about 50% of people report recalling a tick bite, or getting a rash from their tick bite.
ALSO, the Lyme rash, if you are lucky enough to get one (since it is diagnostic immediately), is NOT always a bullseye - it can come in different colors (purplish, etc), and shapes, and sizes. It doesn't always get bigger with time, but sometimes it does. It is far less cut and dry as what people think.
Mostly I think it is important to emphasize that Lyme has been greatly misunderstood, in its diagnosis, range of symptoms, chronicity, treatment, and coinfections, and that your best bet for avoiding a life of pain and debilitation is taking a proactive approach and getting ILADS clinical diagnosis treatment at the first sign of a tick bite.
OH, and one last thing I forgot, you do NOT have to have a tick attached for 24 hours, or engorged, for it to transmit Lyme and many other diseases. As soon as the tick bites you you are at risk for contracting Lyme and other pathogens (I would give the reporter a good long list of possible coinfections). RMSF can be transmitted just through touching a tick, it doesn't even need to bite you.
Sorry I rambled on so much but this is such a rare opportunity. You are really something wonderful to have made such an effort and put yourself out there to help others. You are to be commended.
I am sure you will do a great job! Just keep your notes at hand and think of what you would have wished to have read when you were first so sick and no idea what was wrong with you, and remember how skeptical we all were before we learned what we did about all of this.
Thank you for what you are doing for the Lyme cause, and good luck!
posted
ocean, you asked about make up and looking better ... nope, just be your NORMAL lyme self.
again, they'll come up with, "but you don't look sick"! mentality.
now, relax; you'll do just fine! let us know how it goes and if you felt it came across good and how reporter was.
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Ocean
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Member # 3496
posted
Thanks Nenet!
I had the SPECT scan up on the laptop and we ran out of time =( She was here for 1 hour 45 mins though. She had another appointment.
Bettyg, they didn't even end up taking pics, she did take the pics I had rounded up when I was pretty sick though. I looked a lot worse then than I do now, so I guess that's a good thing =)
I was getting nervous, a little shaky during it. Gosh brain fog was bad, I felt like an idiot, stopped mid-sentence, restarting, ect.
I told her that I don't go to church sometimes when I am like that, it's so embarrassing.
I guess now that my Lyme secret is out everyone will know anyhow. I think I will feel more comfortable telling people now so maybe I should just have my pastor make an announcement in the bulletin, lol!
Overall, she seemed very nice and I gave her a ton of info to take with her.
We'll see, she said it WILL be in the Sunday paper though!
I just wish I hadn't kept messing up, but oh well, that's how it is with Lyme, right??
Thanks everyone for your advice, not sure how much she will put in the paper, but I kept reiterating testing to her and how poor it was. When I told her the Elisa missed 35% of Lyme tests, she was like, "Oh my gosh! Thats' terrible!"
I just hope that people will consider Lyme even with a negative Western Blot.
I talked a little about how the spirochete can 'transform' into different shapes too.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi Ocean,
I'm sure you did a great job getting the info out there. God will use it I'm sure.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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bettyg
Unregistered
posted
wow, almost 2 hrs. interviewing you; that's a good sign right there.
i think ours was perhaps 1 hr. at most; that was 2 of us being interviewed.
you were having a normal lyme day; she got to see that 1st hand; nothing wrong with that. you were ORGANIZED and she left with a ton of info as you said!
ocean, thanks a million from us all for getting out there doing this and organizing UNDER OUR SKIN screenings in your area!
YOU are making a huge difference; LYME AWARENESS IS WHERE YOU ARE!
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Linky and bettyg,
Thanks =)
I am such a lyme brain. I cannot add time, they were here for 1 hour 15 mins, sorry I messed up the time!
Betty, I didn't organize an UOS showing, I wanted to, but wasn't sure where the showing could be held. Can you still do it though??? I should go to our main library to see if they would be willing to host. I don't believe there were ANY screenings in Ohio.
Do you have to pay UOS for a showing?? I would like to try to organize one if it's not too late!
Sorry if I confused you, although when i write stuff it doesn't make sense sometimes. I try to re-read it, but I probably goofed- sorry =)
Thanks for the encouragement though. I hope that they put the worst picture in the paper, I got acne bad from all the thyroid stuff/endocrine, and I look like I have a pained smile, it's rough. I'd forgotten how much weight I gained initally too, and I eat way more now than I did then!
I'm very nervous to see what they write, but the reporter said she is going to call me either tomorrow or Saturday.
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