Just on the News Governor Bredesen is checking into the Mayo Clinic.. He's sick I think he has Babesiosis too I e-mailed him and told him all about the co-infections I hope he got my e-mail
Posted by lymednva (Member # 9098) on :
He's in for a big surprise. They don't know anything about treating Lyme. I guess this is what had to happen for the word to get out that Lyme is not treated correctly by many of the doctors in this country.
I hope for his sake that someone close to him gets the right info soon.
Posted by kathy klopfer (Member # 1624) on :
I e-mailed him and told him all about LD and co-infections.. That he would'nt get any help here and he needed to see Dr.C in Missouri I guess he doesnt listen or he probably does'nt even get to see his e-mails. He's in for a big shock The Mayo Clinic is a JOKE!!! They were saying on the news that the Mayo Clinic has the best Dr's that know about infectous diseases. Good Luck Governor Bredesen your going to need it Posted by Lymetoo (Member # 743) on :
Oh my....that is VERY sad!!!! Mayo S**KS!!!!
Posted by seibertneurolyme (Member # 6416) on :
What do you think? Should we all be sending e-mails now or wait awhile until he is misdiagnosed?
Not sure which strategy would get more attention. Several hundreds or thousands of e-mails surely should get some attention -- especially if the story was leaked to the press.
Or maybe patients could Rally outside Mayo demanding that he be tested by IGeneX or MDL?
There has got to be a way to get some positive publicity out of this for our cause and a correct diagnosis for the governor.
Put on your thinking caps everyone.
Bea Seibert
Posted by bettyg (Member # 6147) on :
My gut reaction to Bea's suggestion was that since he is a GOVERNOR, perhaps those of you in OTHER states could contact YOUR GOV. & pass along this info to them for Tenn. Gov.
I know Iowa's Gov. Tom Vilsack is seriously considerly 2008 running for PRESIDENT.
I think I'll put a bug in his ear since I had his admin asst's email! Bettyg Posted by kathy klopfer (Member # 1624) on :
Another Lyme Disease story just aired on Channel 5 news.. Thats 3 in the last 2 weeks Thursday Channel 5 Friday Channel 4 My Story and Tonight Tuesday Channel 5 The news story said they have had 1000's of people writing in about Lyme Disease. This is sooo good for us Channel 5 said people are wondering why the Governor has not given a press conference and they cannot get in contact with any of his staff..
Posted by seibertneurolyme (Member # 6416) on :
Phooey. The newspaper coverage says he is only flying to Mayo for a short outpatient appointment.
Kathy,
Sounds like the story is getting the public's attention anyway.
Bea Seibert
Posted by doggiemom (Member # 6094) on :
I missed the other Lyme stories, but tonight's Channel 5 story was very good. It really brought to light the problems we TN residents have in getting treatment.
Posted by kathy klopfer (Member # 1624) on :
Did'nt say that the TV. They also said they could'nt get in contact with that Dr. that was advising him seems it all HUSH HUSH at the Bredesen Camp
Posted by treepatrol (Member # 4117) on :
Poor bugger
Posted by lou (Member # 81) on :
Do you think any politicians are going to tell the whole truth about medical conditions that could be incapacitating? I doubt it. Too many sharks in the water to be truthful. So, I would not assume that short outpatient visits at Mayo is indicative of lack of seriousness. The fact that he has not gone back to work and is consulting an out-of-state medical institution is the real clue about his condition.
The treatment he got has not cured him.
Unfortunately, Mayo is about the worst choice he could have made.
Sure hope he reads the emails he is getting. Or someone reads them and figures out to pass on the info. Otherwise, he is in trouble. Man, if those dopes give him steroids!!!!
Posted by Truthfinder (Member # 8512) on :
Well, maybe this is good news - for us, anyway. Looks like he is still looking for a magic bullet.
Frankly, I was afraid they would dose him with Vancomycin - or some treatment that the rest of us peons can't afford - and he would be back in the pink and out of the news entirely.
Tracy
Posted by Scrambled_brain (Member # 3071) on :
My understanding, which could be wrong, is that he is taking antibiotics for his 'tick-borne' illness, which I believe they thought was RMSF or Erlichiosis (sp?). They are surprised at how long his recovery is. So, even if he does have lyme, which seems probable, MOST people do recover from early lyme with antibiotics (even when they don't take it long enough).
In the long run, my guess is that this will not help us in TN, because they will never acknowledge lyme and just say he had some acute symptoms from a tick bite that were treated with short term abx.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lou: Do you think any politicians are going to tell the whole truth about medical conditions that could be incapacitating? I doubt it. Too many sharks in the water to be truthful. So, I would not assume that short outpatient visits at Mayo is indicative of lack of seriousness. The fact that he has not gone back to work and is consulting an out-of-state medical institution is the real clue about his condition.
The treatment he got has not cured him.
Unfortunately, Mayo is about the worst choice he could have made.
Sure hope he reads the emails he is getting. Or someone reads them and figures out to pass on the info. Otherwise, he is in trouble. Man, if those dopes give him steroids!!!!
AGREE, bigtime!!!
I think we should keep sending emails to his office. Where's that address??
Posted by bettyg (Member # 6147) on :
I'll post this here & the OTHER post by Linda since that is where I was headed now to paste this when I read this one.
I sent the below to Iowa's GOV. TOM VILSACK, the CHAIR OF 50 GOVERNORS!
Hi Tom,
I read this tonight & thought of you as governor. I do NOT know if the 2 of you are close or not, but we, the CHRONIC LYME disease/co-infections of lyme community, want to get the word to Gov. B, Tenn.
Do NOT go to Mayo Clinic's infectious MDs; they are NOT LYME LITERTE MDs! Many of us lymies HAVE gone to Rochester, and greatly disappointed to learn NOTHING for the huge costs of money & tests done.
Gov B should have a western blot IGM & IGG done by Igenex lab in Calif, www.igenex.com; or www.MDLABS.COM in New Jersey.
They are the top 2 TICK/LYME disease labs in the USA!
Igenex has their OWN requested form to be downloaded, filled out, signed & datd by MD along with their DIAGNOSIS CODE why the test is being done for insurance purposes.
IT'S PREPAY unless person is on medicare! Using their web site, call for CURRENT $$ of lab work and what tests should be done as they have 2 full pages of testings!
He should also be tested for CO-INFECTIONS, and my attached copy of a lyme brochure describes EACH co-infection and how to treat it.
Iowa has had 3 lyme fatalities, more MISDIAGNOSED fatalities, and many more MISDIAGNOSED with other conditions like I was for 34 years. Lyme mimicks 300 other illnesses.
One Iowa Mom (who has been to 125 drs. for her own misdx lyme) of a 7 yr. old son then had to take her son, herself, & hubby to DR. C, Springfield, Missouri. www.drcharlescrist.com Son was born with CONGENITAL LYME from Mom to baby.
The chronic lyme community recommends Gov B. go to Dr. C or Dr. Joe Burrascano, NY; Dr. Joe recently announced his upcoming 11-06 retirement as a CHRONIC LYME MD, to teach more MDs how to be a CHRONIC LYME MD as well as a political advocate.
Tom, if you can get this thru to Gov B; we would appreciate it. Falling asleep at pc so signing off for now.
EDITED & ADDED BELOW: ~~~~~~~~~~~~~~~~~~~~~~~
PS -- Tom, since you are considering running for President in 08, we would LOVE to talk to you about chronic lyme epidemic in Iowa!
Iowa does NOT have one full-time CHRONIC LYME LITERATE MD in the entire state! Last year, I talked briefly to LG Sally P. about this in Ames.
We have some infectious MDs who were taught the Alan Steere method:
You can be cured in ONE MONTH, and does NOT recognize those of us with chronic lyme for DECADES! They would treat for 21 days only when they knew a tick's spirochete's cycle is EVERY 28 DAYS entering our blood...under treatment!
Infectious MDs led by Steere have recently changed their rules last month to ONE PILL ONLY of antibiotics vs. 21 days! They will NOT be curing anyone! We are really upset by this Tom.
I'm a former state DOT employee who left/quit work at age 49 after working 30 years, 7 months WITHOUT any benefits! Hubby retired w/benefits so I'm on his state retiree health insurance program; thank you God!
It took me 5 years of hell to be approved for SSDI, disability insurance benefits, 7-05! I'm not on medicare.
I talked to one of VP of BCBS last Thurs., 8-17, and was told my $ 5600 of OUT of pocket expenses to go to a MINN. lyme literate/holistic MD would NOT be reimbursed to me including:
RX meds, my 3 office visits including a 3 hr. intensive physical/family history exam, 4-5 lab bills, and supplements,
ALL with NO SUGAR, WHEAT/RYE, COW'S MILK, CHEESE, EGG WHITES, OR GARLIC in since that is what 1 of tests showed I'm ALLERGIC to:
gluten and casein intolerances.
Tom, I sincerely apologize; once I got going here; I could not stop! I wanted to make you aware of what we, chronic lyme patients, go thru every day of our lives:
. fight to be correctly diagnose; me 34 years; . fight to be approved SSDI or SSI benefits; . fight to have our health insurance bills paid vs. being denied!; . fight before the Insurance Commission; . fight by filing lawsuits; . and lastly, fighting every day of our lives for any QUALITY LIFE we can possibly get to share with our loved ones!
It's just not right to have to do all this fighting on issues that should be automatically taken care of.
Thank you Tom so much for your time in reading my chronic lyme plea to help guide Gov. B., Tenn. to the correct TICK/lyme literate MDs, and the plea of Iowans and others NATIONWIDE of the lyme epidemic that the CDC refuses to acknowledge!
Betty Gordon, AMES, IOWA; 36 yrs. chronic lyme patient, 34 yrs. MISdiagnosed, and 2 yrs. in lyme treatment
Posted by kathy klopfer (Member # 1624) on :
Terri Merryman from Channel 5 just e-mailed me and asked Why do I think Bredesen is going to Mayo???why does he not go to Vanderbilt it's surposed to be one of the best hospitals.
Posted by 5dana8 (Member # 7935) on :
great job Betty!
And as always thanks for breaking up the post Posted by groovy2 (Member # 6304) on :
This is a Perfect case where the Lyme Awearness video I have been trying to talk you guys into helping me make for the last year--
would be Perfect
Anyone of you could email him a link to the online movie and get the ball rolling in the right direction-- for a change--
But Oh ya -No movie exists--Jay--
Posted by KrisKraft (Member # 4329) on :
I'll let you all know when we have a broadcast date.
Posted by doggiemom (Member # 6094) on :
Vanderbilt? One of the best hospitals? She's got to be kidding! Ok, they are the best for something like trauma, but when it comes to invsible diseases, they are the absolute worst in the entire state!
Their doctors refused to test me for Lyme. One of their doctors said he could tell just by looking at me that I didn't have Lyme. Another told me I had too many symptoms to have any "real" illness. Another said I must have some kind of mental condition. Another said Lyme disease is not found in TN. All this without any testing whatsoever!
The one who said I must have a mental condition even refused to refer me to a psychiatrist, whom I requested to see because I wanted to prove to him I didn't have any mental problems, so that we could get beyond that and treat the real problem. This was the same doctor who said I couldn't return to work, but when my disability papers came he told the disability insurance company I could work, but he still refused to sign a note for my employer saying I could work. He caused me to lose my job because my employer wouldn't let me come back until this doctor signed a note saying I could work. The doctor refused to sign it, but he was so angry at me for having found a neurologist who proved to him that it wasn't a mental condition, that once I lost the job because he wouldn't sign the paper saying I could work, he also lied on my disability papers so that I couldn't get disability either.
So he got me good by making me lose my job and not get disability. All because his ego couldn't take being proven wrong that I really did have a physical, not mental, illness.
Then there was the Vanderbilt allergist who falsified my medical records, when he learned I was going to take legal action against that other doctor. He wanted to support his buddy, so he wrote on my allergy records that I had a history of suicide attempts, so that it would appear that the other doctor was right about the mental diagnosis. I have never attempted suicide!
Those were all Vanderbilt doctors. I've since found many more women who were treated badly by Vanderbilt doctors. If you are a woman with any kind of invisible disease, whether it be Lyme, Lupus, Fibromyalgia, etc., Vanderbilt is the LAST place you want to go. As for Governor Bredesen, if he had gone to Vanderbilt, *maybe* Vanderbilt might have taken him more seriously than they take us "crazy hypochondriac" women who "enjoy" being sick, lol! Posted by kathy klopfer (Member # 1624) on :
Hi Doggiemom, Please e-mail Terri Merryman at Channel 5 email [email protected]. She was asking me questions anout Vandi.
When I went there I saw the Head ID Dr. it's a woman I also met with another young Dr who knew absolutly nothing about LD.
She told me Lyme did not exist in Tennessee so I did'nt have it the younger ID Dr. said you could only get it in Conn or NY. They did'nt even test me they both just wanted to get me out of there office as quick as possible. Of cause I just cried and cried because I was so flustrated. Please e-mail Terri and tell her tell her you know me and my case..
Posted by viva (Member # 8183) on :
Ditto on Vanderbilt, Doggeymom. But their ignorance of tick-borne illnesses knows no gender boundaries. They ignore men too, based on SO's experience with their ID department.
I've already e-mailed Bredesen. After hearing about his planned trip to Mayo, I called his office (I'm local) to express my concern about the care he would receive there, briefly citing my experience. I was told (in a dismissive tone) that "he is under the care of the best doctors, and they would not recommend anything that was harmful for him."
I politely said that I realized the Mayo clinic was a premier medical institution, and if one were not familiar with TBI, then it would be a reasonable assumption that they could provide good care...but that it was clear that this was not the best channel to express my concerns.
Then I got hung up on....great way to communicate with constituents, huh?
I do think I'll e-mail again, on the chance that the gov. might pay attention to a critical mass of messages with the same theme.
Aviva
Posted by doggiemom (Member # 6094) on :
Kathy, let me do some thinking on that. I've kept my story out of the media because a powerful organization like Vanderbilt can cause a lot of grief when they want to. Things are finally a bit more stable for me, and I'm afraid to stir up anything by going to the media. I don't mind talking about my experiences here, but going to the media could open up a can of worms that I'm not prepared to deal with. I've seen what Vandy can do, and yeah, I'm chicken.
Posted by lou (Member # 81) on :
Just about all of us went thru this same medical trajectory, trusting the establishment and the "best doctors/hospitals" to help us. And getting no help. It takes a while for it to sink in that you are not getting top of the line care. Who knows how long the gov will take to realize this? Guess all we can do is be there and offer help that maybe later he will come to appreciate.
On the other hand, maybe they have caught it early enough and I doubt they will stick with a minimum course of abx for someone important. So, possibly he will be OK regardless of what Mayo does or doesn't do. I have been wondering if the gov was worried because of a herx reaction, which naturally no one is admitting happens in lyme. But maybe he really does have RMSF, or ehrlichiosis.....
Posted by Ann-OH (Member # 2020) on :
I couldn't find this on the TV station website, but good old google had cached it. I don't know if it was posted here before, but here it is.
Thank you so much Kathy for stepping up for all of us.
Kathy Klopfer must crawl around her home to do her chores. She can't manage her walker or wheelchair. Her joints are in too much pain. She's almost paralyzed on her left side and this, she says, is an improvement.
It wasn't a stroke or an accident that did all of this, but the bite from a tick. It happened in her own back yard in April 2001.
``I took my dog for a walk in the woods. When I got ready for bed that night, I saw this little black thing stuck on my side. I thought it was a mole, but my husband said no, it's a tick. So he pulled it off with tweezers and I never thought anything else about it. Three days later, I couldn't get out of bed," says Klopfer.
Six days later, at the site of the tick bite, a typical early symptom of Lyme disease appeared -- the bulls eye rash. Kathy says she went to 19 different doctors. Some told her she had the flu, others diagnosed arthritis, even multiple schlerosis.
No one suspected Lyme Disease, even though she told them about the tick bite. Her symptoms and pain worsened.
``By August, I had to get the walker and then a wheelchair," she says. It's killing' me. I've even thought of killing myself. That's how bad it's gotten."
Medical bills became piled as high as the medicine bottles -- more than $30,000. Kathy cries out of frustration.
"Sometimes I pray I'm not gonna wake up because it's so bad," she says.
But friends recently told Kathy about a doctor in Missouri who specializes in Lyme Disease. She researched Dr. Charles Crist's practice on the Internet and made the journey north to get the diagnosis she dreaded.
"I have severe Lyme Disease with substantial damage to my nervous system. I'm just hoping I can walk again and be normal,'' she says. ``He said if I had gotten help sooner, I shouldn't be in the situation I'm in now. Dr. Crist says he's gonna get me better and I believe him."
After more than three years of constant pain frustration and expense, Kathy has hope the worst is behind her. But she wants everyone in Tennessee to learn from her story.
"People shouldn't be paranoid of ticks, because not every tick carries Lyme Disease. I was unlucky because this one was. I want people to know there is Lyme disease in Tennessee!"
Lyme disease is an infection caused by bacteria in the gut of deer. Ticks feed on deer, then they feed on people. The symptoms can appear as a reddish, blotchy appearance to the skin, flu-like symptoms, sore throat and stiff joints. Lyme disease must be treated with antibiotics as soon as possible, so early diagnosis is critical.
Posted by kathy klopfer (Member # 1624) on :
Does anyone know how I send a e-mail to this thread??? I have a e-mail from Terri Merryman I would like to post but dont know if I can. She's asking me about when I first went to Vandi and was refused treated. Doggymam thats OK I do understand I will speak up if she wants me too I dont care anymore my life is ruined because of these stupid doctors and I can also get a lawyer too. If we all stick together in this I think we can get help.. So heres Terri's email again [email protected] That story Ann posted is the 1st time I was on Tv they still have not posted the last one I did
Posted by lou (Member # 81) on :
Just copy and paste the content of the email. That should work.
Posted by just don (Member # 1129) on :
I have been following this from the start. Here is my take on what is happening and NOT happening.
There is "SOOOO" much outpouring of concern and support for him they are actually getting buried in e-mails, snail mails, and calls of best wishing.
Everybody has an idea as to what to do, rub two sticks together, hang garlic from the Christmas tree, its lyme, its NOT lyme its just the flu, its something else, then something else again, and again, and again!!!
They are inundated with info from so many sources they arent even, cant 'possibily', be reading all this,,, just stacking up in the corner with the rest of them. If an E-mail they hit the delete button.
Thats why the phone call gets cut off short. They are in information over load!!!Period!!!
Unless we have an inroad that gets right to the source, like in his face(the governor) and THEN it is closley guarded situation.
I can darn well assure you HE isnt reading a thing sent to him by ANY means,,,he has helpers doing all that for him and they are as confused as any medical society 'could' be!!
Hence the words, the best of medical society is tending to him and they will do him NO harm!!! Well, sure hope so, but thinking is pretty correct in that HE is in for the same ride we are in for, till the internal bell ding, dings, and he wakes up and says gee I am really sick!!!
HE may not get the same runaround as we do, and not branded a mental case like we do,,, but he is going to have to consult an expert all on his own, unfortunately because we the public DONT know nuttin'.
Hope he sees the rainbow of life faster than you or me. But until he has gone 20 rounds on the duck carousel, he isnt even going to think it because ALL medical people(oops, should have said educated ducks) didnt SAY thats what I had?? OR his test comes back positive, he will get a test quicker than most!!
Right or wrong, thats what I think is the state of affairs in your fair state. Its good for us,,and it is bad for us......maybe it is the key we have been wating for,,,,,,,.
Even tho Senator Birkly Bedell had forged a path down this road long ago and we are no better now than THEN. Go figure, still easy to diagnose, easy to treat, and their is no lyme _____(here)!!! Just more insurance and governmental poppy cock!!!
Keeps insurance claims down,,,tourist trades up!! Nuf said!!
Posted by doggiemom (Member # 6094) on :
Ok, after giving it some thought, I emailed Terri Merryman. I told her what the Vandy docs told me, but I did not mention the allergist's falsified records or what the one doctor did regarding my employer and disability. I kept it focused strictly on Lyme.
Posted by imanurse (Member # 7022) on :
I was misdiagnosed at Mayo Rochester when I actually had Lyme. They never even considered it.
It was the worst medical experience I have had in my life.
Hold the Mayo, Governor! Waste of time and $$$$$$$$$$$$$$.
Posted by Boomerang (Member # 7979) on :
I agree........I think the Gov's office is probably in information overload. Plus, they really don't know what is going on at this point.
Tonight's news said that he would be at Mayo a couple of more days, and probably back home by the weekend.
Posted by doggiemom (Member # 6094) on :
If anyone in middle TN is interested, Channel 5 just said they will be doing a story on the Mayo clinic in a few minutes.
Also Channel 4 said Bredesen's outpatient visit has turned into an overnight stay.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Boomerang: I agree........I think the Gov's office is probably in information overload. Plus, they really don't know what is going on at this point.
I agree too. We need to hit them again in a few weeks.
Posted by doggiemom (Member # 6094) on :
Channel 5 just posed the question "Why the Mayo Clinic" when we have so many good facilities here, or something to that effect. They're sending a reporter to the clinic who will be covering the story straight from there starting tomorrow.
Posted by bugabooboo (Member # 7383) on :
I should have realized when I made my first call to Mayo and asked if there were any Dr.s who specialized in LD and the receptionist said, "all of our Dr.s specialize in LD".
You know if the receptionists answer this way, they have been trained that way.
I ended up with a diagnosis of "chronic sinusitis", and a prescription for Amphoterecin B nasal washes for a YEAR!!! For those of you who don't know, Ampho is a big gun antifungal frequently given IV to very immunologically comprimised patients.
After two weeks I looked like Jimmy Durantee and had to give up working. That was 2 years ago. Haven't worked since.
Sweet.
BTW...the Dr. I saw came in leading his entourage of health care workers like he was the King of Siam. Acted that way too.
They've come a long way from the down-to-earth founders.
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so much for your time in reading my chronic lyme plea to help guide Gov. B., Tenn. to the correct TICK/lyme literate MDs, and the plea of Iowans and others NATIONWIDE of the lyme epidemic that the CDC refuses to acknowledge!