We've watched LKL for decades now; we're impressed with the health issues he deals with.
We want CHRONIC LYME/TICK disease programs covering and guests to include:
1. Dr Joseph Burrascano, infectious MD whose specialty is long-term chronic lyme patients, and Dr. Brian Fallon, new director of NATIONAL CHRONIC LYME RESEARCH CENTER in Columbia University, NY. This is the ONLY chronic lyme research in the WORLD!
2. Also have Ms. Pat Smith, the President of the Lyme Disease Assn., who is a lyme patient too.
3. We need the medical community to believe in and treat us CHRONIC LYME patients who have been misdiagnosed for years/decades like me.
I went 34 yrs. misdx; almost 2 years in treatment with no progress to date.
4. State Dept. of Health from several states are going after our LLMD, LYME LITERATE MD, medical licenses for treating long-term antibiotics.
2 LLMDs currently under investigation are: *****************
Dr. Charles Jones, KIDS LLMD, Connecticut, and
Dr. Jemsek, LLMD, in North Carolina
5. 300 OTHER illnesses mimic LYME disease including: ALS, Parkinson's, Alzheimer's/dementia, fibromyalgia pain, chronic fatigue, Bell;s Palsy, MS, all mental illnesses, & the list goes on.
6. People should have a western blot IGM/IGG blood tests done and sent to: IGENEX diagnostic lab in Palo Alto, Calif. They test for all strains of lyme disease in the 16 protein bands they test. It will show how many positives, negatives, and undetermined they see.
Then it is a CLINICAL diagnosis from your PCP, primary care physician, who has seen you multiple times for all the symptoms shown.
I have NEVER seen you have a show on this FATAL disease in all the years we've had cable 20-25 yrs!
One show will not begin to touch this subject; so I am asking for at least 2 shows back to back to cover the gamut of our life-threatening illness.
7. Then comes also the health insurance industry who won't pay for IV antibiotics longer than 28 days.
FYI, I know of women who have been on abx IVs for 5 - 10 YEARS!
The cost for 1 month's IV treatments is between $3 - $5,000/month!
Larry, an extremely LIMITED amount of money is spent years on LYME disease, but yet WEST NILE VIRUS which they are few cases of, has an enormous budget as well as the AIDS budget.
Larry, I sincerely hope with all my heart that YOU WILL have lyme/tick disease programs in the near future.
God bless you Larry, and keep up the GOOD work you provide the world since you are "international"! ******************************************
Hi to all my lymie friends out there; time to have another group mailing to Larry King Live for LYME DISEASE shows on CNN;s LKL show! This is just what I sent now.... Bettyg ***************************
LARRY KING LIVE'S CNN SHOW --------------------------- 5-20-05 DIABETIS show. I tried calling in continuously all night since I've NOT been able to click on LKL's "contact us" with questions on his web page.
Last year, I was diagnosed with these 3 life-threatening illnesses: diabetes 2; late-stage chronic LYME/tick disease after being misdiagnosed for 34 years; and sleep apnea. I'm on diet/exercise only; A1C is 6.1...good for me!
I've really been struggling with blood sugar numbers in 200 range in afternoon due to ALL the lyme disease meds & others I take...was up to 19 in Feb. 06 daily!
To the Dr., how can we get more info out there on diabetes 2, lyme, & sleep apnea? I've never been as sick as I am now. ===========================
SHOW SUGGESTION: I'd like to see at least 2 nights straight for LYME/tick disease. There are those just bitten who have rashes or bulls-eye rash for 30-40% only show this one for a POSITIVE lyme diagnosis.
Then there those of us who have gone YEARS without being diagnosed correctly and given LONG-term antibiotics to help us go into REMISSION since we can NOT be cured.
Then the LLMD, lyme literate MDs, who have chosen to treat our lyme have been threatened to take their drs. licenses for treating us w/long-term abx.
There is so much to teach the public about since 300 OTHER illnesses MIMIC lyme disease including: ALS, parkinson's, all the mental illnesses, fibromyalgia, chronic fatigue, bell's palsy, & the list goes on & on!
Larry. I'd like to see interviewed are: Dr. Joseph Barrascano, a leading MD in long-term abx, and Dr. Brian Fallon, a neuropsycholigcal MD.
Then you need NON-celebrities; such as myself or others having this disease for 30-50 years!
Larry, I really respect what you do on these health educational shows! You show celebrities & "NORMAL" folks who have these, the drs. with the most current info, & allow us viewers to call in with our quesions or send in questions.
Thank you for the wonderful opportunities you give us all. God bless you Larry/staff.
PS - we lymies who wear green bracelets noticed you are wearing a GREEN bracelet. Is it for Lyme disease? Have the rest of you written Larry's staff? The SQUEAKY WHEEL gets greased; and boy have I gotten grease jobs in the past! LOL
I HAD NO IDEA THAT HE WAS INTERESTED IN DOING A SHOW!! A few weeks ago, I sent a LONG letter to Oprah with a lot of info, and I just sent a message to Rosie O'Donnell about doing a show on it...
Do you have an address for LK live? Do I send an e-mail??
Thanks!
Cookie
-------------------- Cucamonga Posts: 90 | From NYC, NY USA | Registered: Feb 2002
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I don't know IF he is or not, but I tried last year and can't remember about the year before.
Whenever I try calling in, I'm always prepared to ask him to do a chronic lyme disease program too.
Larry does an outstanding job; his good MDs on show.
Get your friends/and THIS ENTIRE LYME BOARD COMMUNITY to join hands and send an email to Larry at the above address.
On the left hand column is contact me.... If that doesn't work, which it now doesn't for me; see the top and use the CONTACT US there stating this is for the LARRY KING LIVE show.
Again, by going thru the main CNN address vs. Larry's DIRECT program contact us; it might show the executives the NUMBER OF FOLKS interested in chronic lyme disease, etc.
This is your chance .... SOUND OFF LYMIES; IT'S OUR WEEK; MAY 13!
posted
I just e mail him also and made a plea for my son as a mother with a child with this! I also contacted Oprah and all the news stations here in Michigan along with all the papers. Someone has to spread the word around here.
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
Have ole Larry do a show on how much the LLMD's charge.... Dr C's first office visit is $400-600+... and if u want testing of ANY kind, thats extra. Since he doesn't take insurance... you have to pay for everything up front.. tests too.
If more Internest would treat this, he couldnt charge so much.
Posts: 12 | From Missouri | Registered: May 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i sent Larry an email.
May 13th 2005 was the last day i was well. At that time I thought it was just a simple sore throat...boy was i wrong :-/
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
Thank you everyone for contacting them. Let's keep this up for MORE lymies to participate.
We want a LARRY KING LIVE show on chronic lyme disease! We're not giving up.....
posted
Betty, Just sent Larry an Email. You go girl. Rally the Radicals. Love & Light, Yemaya Posts: 188 | From NM | Registered: Feb 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Most of those shows have multiple lines incoming for inhanced speed etc. Try dialing one number over the number that is advertised. Usually the sequential lines have consecutive numbers. If it isnt the show you can always say, sorry, wrong number. Might help, cant hurt but I am still --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
"Bettyg", I just sent Larry King an e-mail this morning. The squeaky wheel better get the grease!!!!!!! "Let's all keep squeakin", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey guys,
I wrote to LK just now. Not very articulate, but to the point.
keep on truckin'
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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bettyg
Unregistered
posted
Thank you Yemaya, Just Don, Allie, Somerset, and Hopeful, for taking the time to email the LKLive show! This is catching on, and it didn't hurt that much to send an email, did it? LOL
Up we go again for those not having seen this post! Thank you ALL again for your participation in having "our lyme voices" heard by the public to educate them!
After I have my cup of coffee, I am also going to e-mail Larry K.
I want the whole world to become more aware of Lyme Disease not to mention changes that we all desperately need, from the politicans to the CDC, to health care. And get those Lyme Bills passed! Yes!
Denise :-)
Posts: 15 | From New York, USA | Registered: May 2006
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bettyg
Unregistered
posted
up for our WEEKEND WARRIORS to come on to read.
I would really like to see a show about tick borne illnesses - Lyme disease. This is a pandemic on the east coast and is moving through the country. I used to live in PA and was infected with Lyme disease when I was 28. I was treated per the insurance company acceptable treatment, and I am still very ill - now 35 and I have various neuro, cardiac, rheumatoid and blood disorders as a result.
The doctors who know about this disease and attempt to treat their patients are stigmatized and even punished/put out of business by the insurance industry/medical board system.
There are thousands of diagnosed and undiagnosed people with Lyme that are not properly treated, the medical community wants to keep the knowledgeable doctors quiet, and the people with the disease suffer symptoms in every major organ system.
The disease is somewhat similar to syphilis. But we don't get better, because many doctors don't know, many don't care, and those who do know are scared for their careers.
It has become a black market where the lyme knowledgeable doctors are anonymous, are afraid, and don't take insurance for fear of reputation and license. The scientific studies supporting the treatments that the "lyme doctors" prescribe, are complete, published and ignored by the health system.
Hope you consider this as a topic.
Thanks again for your great coverage of events. It's always a good show.
Regards,
Joseph Edel, CPA
-------------------- sooo, what seems to be the problem? Posts: 5 | From Torrance, CA | Registered: May 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Daryl Hall, where are you..."out of Touch?" We need your high profile persona to help raise awareness and get on these shows to spread the message.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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bettyg
Unregistered
posted
Joseph, wonderful, succinct letter! Thanks so much for joining us as a collective group!
Newbie...I'll copy/paste my newbie links to get your started on lymenet resources.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
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bettyg
Unregistered
posted
up for more lymies to send their letters to Larry King Live ... we've got a lot of posters here unaccounted for.
We want a CHRONIC LYME disease show....2 part at least!
I almost called in tonight for the Donny & Marie Osmond program.
posted
How can I get one of the green braclets? I have had lyme disease since 1991. My last treatment was in 1994 from the original onset of the disease. It came back 12 yrs. later. I guess it was never really gone.
I would like to do anything I can to raise the awareness of this awful disease. Let me know what I can do to help.
Posts: 20 | From California | Registered: Mar 2006
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quote:Originally posted by Raz: Have ole Larry do a show on how much the LLMD's charge.... Dr C's first office visit is $400-600+...
For a two hour visit that is VERY reasonable. Try seeing DR B and see what HE charges!
Lyme is a complex disease and these LLMD's have to invest alot of time in us.
My GP charges $65 for 10 minutes....so that would be $390 per hour.
PS...DR C charges around $420 for the first visit, not $600.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Welcome Devan! We'd love to have you participate in any way you can to help ALL of us lymies!
1. Email the Larry King Live show; see my initial note above about his web page.
2. Getting a green bracelet -- SCOTT FORSGREN has sent out many free to us lymies. Scott goes by SForsgren, and posts a lot; so look for his name in posters or in DIRECTORY..membership.
It's at TOP of screen below where you post/reply boxes. You can send him a PM, private message from either.
Scott will need your full name and complete mailing address. So put them in the PM to him.
3. Since you're in Calif., have you contacted Phyllis Mervine, sp, head of Calif. LDA, CALDA? She has a post at the beginning of medical or GENERAL SUPPORT about federal bills, etc.
In General support during May, she posted about have posters to advertise May 12...international LYME, FIBROMYALGIA, & CHRONIC FATIGUE DAY. You might find some ideas there too.
4. Others have written Oprah, etc.
5. We write a lot of letters in response to any lyme articles in the newspapers in support of their publishing ACCURATE info, etc.
6. MOST IMPORTANTLY, we send emails/call congress on the LYME bills presently there! Hope you'll make that one a priority.
7. New post on both boards by PJ LANGHOFF, limelighter?, on her new LYME book, Journey in the Forest I'm guessing...have nothing in front of me; my mind has a lot to be desired.
Read the part of giving a copy to your legislative person in DC; if you are interested in doing this. Contact her by PM and she will quote you a LOWER $$ cost due to the purpose of educating our DC congress!
posted
up; I posted another email I sent to the LARRY KING LIVE show tonight asking for 2 back-to-back nights of LYME/TICK disease programming.
For those of you who didn't go to hearings this week or next, please join me in requesting shows about OUR chronic lyme disease. Thanks everyone!
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bettyg
Unregistered
posted
up for those back from Dr. Jemsek's hearing and mad who want to do something positive ... get the word out publicly by a tv program on lyme disease
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posted
Thank you for all who have kept this effort going! I sent my email to the Larry King show a few minutes ago.
My husband, daughter and father all contracted Lyme in the same suburban backyard in Conn. Because of the unfamiliarity of NC drs (remember, there is no Lyme disease in North Carolina according to the ID guys at Wake Forest)my daughter did not get adequate care until we found Dr. J in our state. 4 years later she still has a way to go but is far from the the bedridden child she was.
My husband now is receiving treatment for Lyme after 14 years of being passed from one specialist to another, Duke, Mayo Clinic, rheumatologists, ear nose and throat drs, unnecessary surgery, etc... Finally, after beginning IV therapy he is having glimmers of what he had almost forgotten, what it is to feel "not sick"!
Unfortunately, we did not begin to educate ourselves about Lyme till after my daughter got bit on the day of my father's funeral. It is chilling to think now that his dementia began soon after the tick bite. Yale said Alzheimers, I'm not so sure.
Thanks again for the idea to contact Larry King about a show on Lyme. I watch him all the time and think it would be fairly done and be of benefit to many to help them avoid some of the medical and personal nightmares many of us and our families have suffered.
Posts: 25 | From NC | Registered: Jul 2005
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bettyg
Unregistered
posted
Serenity, love the name!
Thank you so much for your heartwarming comments. I hope you put those comments into your email to LKLive show. Those comments are the ones that touch your heart.
My sympathies on the loss of your Dad, and then to contend with lyme disease afterwards ... uffda!
I have posted sympathy poems, and you can read in Treepatrol's NEWBIE LINKS in medical; top part post. Look to the END of his initial list of links ok.
Yes, we have to continue ALL our efforts in whatever avenue we can find, and pursue.
We will be HEARD nationally and internationally! GO! FIGHT! WIN! HOPE! QUALITY LIFE!
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posted
Yay, Betty. Good idea. I'll send my email now.
Small point, but maybe could be important. Pat Smith is not a Lyme patient. Her daughter has been extremely ill with Lyme disease. She told that story. at the Ct. rally for Lyme patients' rights a couple of weeks ago.
I sometimes think that Pat is the only person we have who does not herself have Lyme disease. Thank goodness there is at least one brain we can count on working all the time. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
Bruce and Ellen, thank you for both for emailing LKL.
Ellen Luba, thank you for the clarification that Pat's daughter has lyme; not Pat. I never knew that.
Another outstanding mind we have online here is Bea Siebert...hope I spelled that write!
Here is an outstanding 24/7 caregiver to her chronic lyme husband, and shares so freely her expertise she has learned with every new symptom hubby has.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey DrewZee
fantastic letter
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Dana, how did you come across this older post of mine? just curious....Bettyg
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Betty
It was up today so I answered by my post. Didn't notice the july date till just now.
Have no idea how this got up
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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